Is my child ready for potty training?
Please don’t compare your child to any other you know, all children are ready at different stages
• Most children can control their bowel before their bladder.
• By the age of two, some children will be dry during the day, but this is still quite early.
• By the age of three, 9 out of 10 children are dry most days. Even then, all children have the odd accident, especially when they’re excited, upset or absorbed in something else.
• By the age of four most children are reliably dry.
This is not set in stone so please don’t worry or stress about it
Are they…
Telling you they have done wee or poo in nappy?
Taking nappy off when not clean?
Showing an interest in the toilet/potty?
These are all signs your child is ready, please don’t compare your child to any other you know, all children are ready at different stages., if they are not interested don’t force them, you will make the progress longer and more stressful for both of you, try again in a few weeks. Once they are ready for training try not to put them back in nappies just because the washing is piling up, this is very confusing, and if you have waited until the right time it should run smooth.
Potty or toilet?
The child will choose! Potty’s r not as big and scary and you can let the child choose one. There are lots of fancy potties but a simple cheap one is fine. You can let them draw on it or stick stickers on it to make it more personal to them. Put the potty in a place it will be seen every day, it will then become a familiar object. Use it in play; teddy can have a wee on it too. Your child may not like the potty and prefer toilet, a foam seat insert is recommended and a step, so they can reach. These are also brilliant for the transfer from potty to toilet.
Getting started.
The best thing to do is every nappy change encourage them to sit on the potty, if they want to great if not don’t force it and try again next change or day after. If your child does a wee or poo then lots and lots of praise, then put on nappy as normal. You will soon find they wee every time, or just take the nappy off and go themselves and the nappy is often dry. If they do anything, let them help you empty into the toilet and flush it away, be sure to get into the good habit of hand washing. Also big boy/girl pants are a good encouragement lots of cartoon ones available, but don’t spend too much money as you may find poo accidents make you have to throw them away. Always always have a good supply of clothes changes when away from home.
Pull ups or not?
Entirely up to you, they are useful if you are out and about and won’t have access to a toilet, but the child does feel the wet (maybe uncomfortable) and don’t hold much at all so get very heavy and can pull down clothes. However if you have waited until your child is ready this shouldn’t be a problem. In past experience, it’s not recommended to let the child run around the house with nothing on bottom half, because obviously they can’t do this outside or in public.
Sleep times
Sleep always comes later than being awake, so you can just tackle the days first and when they are very confident tackle sleep. If having a nap encourage a wee before they sleep and as soon as wake if you are going nappy free. Even if not, do the same as gets into good habits. Nights are trickier. Again encourage a wee before bed. A good hint is not to allow big drinks an hour before bed as it takes one hour to get through the system. Bed mats are available to buy or a mattress protector is a very good recommendation. Another good hint is to carry the child to the toilet when you go to bed and even though they are still half asleep they automatically wee. Or leave the potty in the bedroom with a nightlight so it’s visible, do you ladies have any other hints for night times?
Sticker or reward charts
A brilliant visual aid for children, they get very excited sticking a little sticker on their chart, after so many stickers (your decision how many) give a little prize, something small crayons or a magazine for example. Lots are available on Google but you can even just print off a favourite character and stick them on there!
Accidents
They happen! Don’t say a word, as hard as it is changing your little one AGAIN, do not draw any attention to it as you may embarrass them and they can regress in training, just mop up, change and encourage to finish wee and then give new clothes. If your child has been dry for a while and starts having accidents, think about what is going on in their life – new school? Baby? House etc? And try to talk to them about this, again don’t draw attention to it so they know it won’t attract any of any sort, if nothing new in their life, take a trip to the doctor as they may have a water infection.
Poo problems!
Some children just don’t like to poo on potty. Lots of encouragement is needed, make it fun, if they are sitting on potty read a story to take their mind off it. Be sure they have lots of water and fibre to keep it soft so it doesn’t become uncomfortable for them. If there is a regular poo time, be sure they are on the potty around this time, poos usually happen 20 – 30 minutes after a meal.
• Do it in stages, when happy with first stage move on to next _
• Explain that he can do a poo in his nappy but only if he stands or sits next to the toilet or potty.
• Next, while he is still wearing a nappy, help him to sit on the potty or the toilet with a footstep for him to rest his feet on. If he's scared to sit on the toilet, you could suggest he stands on the footstep with his back to the toilet to begin with.
• When he is happy to do this, start to encourage him to sit on the potty or loo with the nappy loosely fastened.
• Next try to balance the nappy in the loo or at the bottom of the potty, so it catches the poo. But make sure you take the nappy out again and throw it away. Never flush nappies down the toilet.
• Once he's happy to poo this way, see if he'll let you take his nappy off. If he's frightened by the noise made when he poos in the toilet, place some toilet paper or a nappy in the loo to prevent splashes and noises.
http://www.babycentre.co.uk/x548914/how-can-i-encourage-my-son-to-do-poos-in-his-potty#ixzz2OCGhAemz
Pirate petes potty – andrea pinnington
Boys potty time – dk
Potty training boys – dr caroline Fertlemean
The potty book for boys – Alyssa satin capucilli
Elmos potty time (dvd)
Once upon a potty – alona frankel
Even fire fighers go to the potty – wendy wax
Little princess, I want my potty – tony ross
I don’t want to wash my hands (little princess – tony ross
Princess pollys potty – andrea pinnington
Sunday, 31 March 2013
Thursday, 28 March 2013
Sibling rivalry
While many kids are lucky enough to become the best of friends with their siblings, it's common for brothers and sisters to fight. (It's also common for them to swing back and forth between adoring and detesting one other!) Often, sibling rivalry starts even before the second child is born, and continues as the kids grow and compete for everything from toys to attention. As kids reach different stages of development, their evolving needs can significantly affect how they relate to one another.
It can be frustrating and upsetting to watch — and hear — your kids fight with one another. A household that's full of conflict is stressful for everyone. Yet often it's hard to know how to stop the fighting, and or even whether you should get involved at all. But you can take steps to promote peace in your household and help your kids get along.
Many different things can cause siblings to fight. Most brothers and sisters experience some degree of jealousy or competition, and this can flare into squabbles and bickering. But other factors also might influence how often kids fight and how severe the fighting gets. These include:
• Evolving needs. It's natural for kids' changing needs, anxieties, and identities to affect how they relate to one another. For example, toddlers are naturally protective of their toys and belongings, and are learning to assert their will, which they'll do at every turn. So if a baby brother or sister picks up the toddler's toy, the older child may react aggressively. School-age kids often have a strong concept of fairness and equality, so might not understand why siblings of other ages are treated differently or feel like one child gets preferential treatment. Teenagers, on the other hand, are developing a sense of individuality and independence, and might resent helping with household responsibilities, taking care of younger siblings, or even having to spend time together. All of these differences can influence the way kids fight with one another.
• Individual temperaments. Your kids' individual temperaments — including mood, disposition, and adaptability — and their unique personalities play a large role in how well they get along. For example, if one child is laid back and another is easily rattled, they may often get into it. Similarly, a child who is especially clingy and drawn to parents for comfort and love might be resented by siblings who see this and want the same amount of attention.
• Special needs/sick kids. Sometimes, a child's special needs due to illness or learning/emotional issues may require more parental time. Other kids may pick up on this disparity and act out to get attention or out of fear of what's happening to the other child.
• Role models. The way that parents resolve problems and disagreements sets a strong example for kids. So if you and your spouse work through conflicts in a way that's respectful, productive, and not aggressive, you increase the chances that your children will adopt those tactics when they run into problems with one another. If your kids see you routinely shout, slam doors, and loudly argue when you have problems, they're likely to pick up those bad habits themselves.
While it may be common for brothers and sisters to fight, it's certainly not pleasant for anyone in the house. And a family can only tolerate a certain amount of conflict. So what should you do when the fighting starts?
Whenever possible, don't get involved. Step in only if there's a danger of physical harm. If you always intervene, you risk creating other problems. The kids may start expecting your help and wait for you to come to the rescue rather than learning to work out the problems on their own. There's also the risk that you — inadvertently — make it appear to one child that another is always being "protected," which could foster even more resentment. By the same token, rescued kids may feel that they can get away with more because they're always being "saved" by a parent.
If you're concerned by the language used or name-calling, it's appropriate to "coach" kids through what they're feeling by using appropriate words. This is different from intervening or stepping in and separating the kids.
Even then, encourage them to resolve the crisis themselves. If you do step in, try to resolve problems with your kids, not for them.
When getting involved, here are some steps to consider:
• Separate kids until they're calm. Sometimes it's best just to give them space for a little while and not immediately rehash the conflict. Otherwise, the fight can escalate again. If you want to make this a learning experience, wait until the emotions have died down.
• Don't put too much focus on figuring out which child is to blame. It takes two to fight — anyone who is involved is partly responsible.
• Next, try to set up a "win-win" situation so that each child gains something. When they both want the same toy, perhaps there's a game they could play together instead.
Remember, as kids cope with disputes, they also learn important skills that will serve them for life — like how to value another person's perspective, how to compromise and negotiate, and how to control aggressive impulses.
Simple things you can do every day to prevent fighting include:
• Set ground rules for acceptable behavior. Tell the kids to keep their hands to themselves and that there's no cursing, no name-calling, no yelling, no door slamming. Solicit their input on the rules — as well as the consequences when they break them. This teaches kids that they're responsible for their own actions, regardless of the situation or how provoked they felt, and discourages any attempts to negotiate regarding who was "right" or "wrong."
• Don't let kids make you think that everything always has to be "fair" and "equal" — sometimes one kid needs more than the other.
• Be proactive in giving your kids one-on-one attention directed to their interests and needs. For example, if one likes to go outdoors, take a walk or go to the park. If another child likes to sit and read, make time for that too.
• Make sure kids have their own space and time to do their own thing — to play with toys by themselves, to play with friends without a sibling tagging along, or to enjoy activities without having to share 50-50.
• Show and tell your kids that, for you, love is not something that comes with limits.
• Let them know that they are safe, important, and loved, and that their needs will be met.
• Have fun together as a family. Whether you're watching a movie, throwing a ball, or playing a board game, you're establishing a peaceful way for your kids to spend time together and relate to each other. This can help ease tensions between them and also keeps you involved. Since parental attention is something many kids fight over, fun family activities can help reduce conflict.
• If your children frequently squabble over the same things (such as video games or dibs on the TV remote), post a schedule showing which child "owns" that item at what times during the week. (But if they keep fighting about it, take the "prize" away altogether.)
• If fights between your school-age kids are frequent, hold weekly family meetings in which you repeat the rules about fighting and review past successes in reducing conflicts. Consider establishing a program where the kids earn points toward a fun family-oriented activity when they work together to stop battling.
• Recognize when kids just need time apart from each other and the family dynamics. Try arranging separate play dates or activities for each kid occasionally. And when one child is on a play date, you can spend one-on-one time with another.
Keep in mind that sometimes kids fight to get a parent's attention. In that case, consider taking a time-out of your own. When you leave, the incentive for fighting is gone. Also, when your own fuse is getting short, consider handing the reins over to the other parent, whose patience may be greater at that moment.
Getting Professional Help
In a small percentage of families, the conflict between brothers and sisters is so severe that it disrupts daily functioning, or particularly affects kids emotionally or psychologically. In those cases, it's wise to get help from a mental health professional. Seek help for sibling conflict if it:
• is so severe that it's leading to marital problems
• creates a real danger of physical harm to any family member
• is damaging to the self-esteem or psychological well-being of any family member
• may be related to other significant concerns, such as depression
If you have questions about your kids' fighting, talk with your doctor, who can help you determine whether your family might benefit from professional help and refer you to local behavioral health resources.
http://kidshealth.org/parent/positive/family/sibling_rivalry.html#
Before the baby entered your family, your toddler was told he’d have a wonderful little brother to play with, and how much fun it would be. Then the little brother is born and your toddler is thinking, “Are you kidding me? This squirming, red-faced baby that takes up all your time and attention is supposed to be FUN?” He then “plays” with the baby in the only ways he knows how. He plays catch. You yell at him for throwing toys at the baby. He plays hide-and-seek. You yell at him to get the blanket off the baby. He gives the kid a hug, and you admonish him to be more careful. Is it any wonder that your toddler is confused?
Teach: Your first goal is to protect the baby. Your second, to teach your older child how to interact with his new sibling in proper ways. You can teach your toddler how to play with the baby in the same way you teach him anything else. Talk to him, demonstrate, guide and encourage. Until you feel confident that you’ve achieved your second goal, however, do not leave the children alone together. Yes, I know. It isn’t convenient. But it is necessary, maybe even critical.
Hover: Whenever the children are together, “hover” close by. If you see your child about to get rough, pick up the baby and distract the older sibling with a song, a toy, an activity or a snack. This action protects the baby while helping you avoid a constant string of “Nos,” which may actually encourage the aggressive behavior.
Teach soft touches: Teach the older sibling how to give the baby a back rub. Tell how this kind of touching calms the baby, and praise the older child for a job well done. This lesson teaches the child how to be physical with the baby in a positive way.
Act quickly: Every time you see your child hit, or act roughly with the baby, act quickly. You might firmly announce, “No hitting, time out.” Place the child in a time-out chair with the statement, “You can get up when you can use your hands in the right way.” Allow him to get right up if he wants – as long as he is careful and gentle with the baby. This isn’t punishment, after all. It’s just helping him learn that rough actions aren’t going to be permitted.
Demonstrate: Children learn what they live. Your older child will be watching as you handle the baby and learning from your actions. You are your child’s most important teacher. You are demonstrating in everything you do, and your child will learn most from watching you.
Praise: Whenever you see the older child touching the baby gently, make a positive comment. Make a big fuss about the important “older brother.” Hug and kiss your older child and tell him how proud you are.
Watch your words: Don’t blame everything on the baby. “We can’t go to the park; the baby’s sleeping.” “Be quiet, you’ll wake the baby.” “After I change the baby I’ll help you.” At this point, your child would just as soon sell the baby! Instead, use alternate reasons. “My hands are busy now.” “We’ll go after lunch.” “I’ll help you in three minutes.”
Be supportive: Acknowledge your child’s unspoken feelings, such as “Things sure have changed with the new baby here. It’s going to take us all some time to get used to this.” Keep your comments mild and general. Don’t say, “I bet you hate the new baby.” Instead, say, “It must be hard to have Mommy spending so much time with the baby.” or “I bet you wish we could go to the park now, and not have to wait for the baby to wake up.” When your child knows that you understand her feelings, she’ll have less need to act up to get your attention.
Give extra love: Increase your little demonstrations of love for your child. Say extra I love yous, increase your daily dose of hugs, and find time to read a book or play a game. Temporary regressions or behavior problems are normal, and can be eased with an extra dose of time and attention.
Get ‘em involved: Teach the older sibling how to be helpful with the baby or how to entertain the baby. Let the older sibling open the baby gifts and use the camera to take pictures of the baby. Teach him how to put the baby’s socks on. Let him sprinkle the powder. Praise and encourage whenever possible.
Making each feel special: Avoid comparing siblings, even about seemingly innocent topics such as birth weight, when each first crawled or walked, or who had more hair! Children can interpret these comments as criticisms.
Take a deep breath and be calm. This is a time of adjustment for everyone in the family. Reduce outside activities, relax your housekeeping standards, and focus on your current priority, adjusting to your new family size.
http://pregnancy.about.com/od/secondpregnancy/a/jealousy_2.htm
It can be frustrating and upsetting to watch — and hear — your kids fight with one another. A household that's full of conflict is stressful for everyone. Yet often it's hard to know how to stop the fighting, and or even whether you should get involved at all. But you can take steps to promote peace in your household and help your kids get along.
Many different things can cause siblings to fight. Most brothers and sisters experience some degree of jealousy or competition, and this can flare into squabbles and bickering. But other factors also might influence how often kids fight and how severe the fighting gets. These include:
• Evolving needs. It's natural for kids' changing needs, anxieties, and identities to affect how they relate to one another. For example, toddlers are naturally protective of their toys and belongings, and are learning to assert their will, which they'll do at every turn. So if a baby brother or sister picks up the toddler's toy, the older child may react aggressively. School-age kids often have a strong concept of fairness and equality, so might not understand why siblings of other ages are treated differently or feel like one child gets preferential treatment. Teenagers, on the other hand, are developing a sense of individuality and independence, and might resent helping with household responsibilities, taking care of younger siblings, or even having to spend time together. All of these differences can influence the way kids fight with one another.
• Individual temperaments. Your kids' individual temperaments — including mood, disposition, and adaptability — and their unique personalities play a large role in how well they get along. For example, if one child is laid back and another is easily rattled, they may often get into it. Similarly, a child who is especially clingy and drawn to parents for comfort and love might be resented by siblings who see this and want the same amount of attention.
• Special needs/sick kids. Sometimes, a child's special needs due to illness or learning/emotional issues may require more parental time. Other kids may pick up on this disparity and act out to get attention or out of fear of what's happening to the other child.
• Role models. The way that parents resolve problems and disagreements sets a strong example for kids. So if you and your spouse work through conflicts in a way that's respectful, productive, and not aggressive, you increase the chances that your children will adopt those tactics when they run into problems with one another. If your kids see you routinely shout, slam doors, and loudly argue when you have problems, they're likely to pick up those bad habits themselves.
While it may be common for brothers and sisters to fight, it's certainly not pleasant for anyone in the house. And a family can only tolerate a certain amount of conflict. So what should you do when the fighting starts?
Whenever possible, don't get involved. Step in only if there's a danger of physical harm. If you always intervene, you risk creating other problems. The kids may start expecting your help and wait for you to come to the rescue rather than learning to work out the problems on their own. There's also the risk that you — inadvertently — make it appear to one child that another is always being "protected," which could foster even more resentment. By the same token, rescued kids may feel that they can get away with more because they're always being "saved" by a parent.
If you're concerned by the language used or name-calling, it's appropriate to "coach" kids through what they're feeling by using appropriate words. This is different from intervening or stepping in and separating the kids.
Even then, encourage them to resolve the crisis themselves. If you do step in, try to resolve problems with your kids, not for them.
When getting involved, here are some steps to consider:
• Separate kids until they're calm. Sometimes it's best just to give them space for a little while and not immediately rehash the conflict. Otherwise, the fight can escalate again. If you want to make this a learning experience, wait until the emotions have died down.
• Don't put too much focus on figuring out which child is to blame. It takes two to fight — anyone who is involved is partly responsible.
• Next, try to set up a "win-win" situation so that each child gains something. When they both want the same toy, perhaps there's a game they could play together instead.
Remember, as kids cope with disputes, they also learn important skills that will serve them for life — like how to value another person's perspective, how to compromise and negotiate, and how to control aggressive impulses.
Simple things you can do every day to prevent fighting include:
• Set ground rules for acceptable behavior. Tell the kids to keep their hands to themselves and that there's no cursing, no name-calling, no yelling, no door slamming. Solicit their input on the rules — as well as the consequences when they break them. This teaches kids that they're responsible for their own actions, regardless of the situation or how provoked they felt, and discourages any attempts to negotiate regarding who was "right" or "wrong."
• Don't let kids make you think that everything always has to be "fair" and "equal" — sometimes one kid needs more than the other.
• Be proactive in giving your kids one-on-one attention directed to their interests and needs. For example, if one likes to go outdoors, take a walk or go to the park. If another child likes to sit and read, make time for that too.
• Make sure kids have their own space and time to do their own thing — to play with toys by themselves, to play with friends without a sibling tagging along, or to enjoy activities without having to share 50-50.
• Show and tell your kids that, for you, love is not something that comes with limits.
• Let them know that they are safe, important, and loved, and that their needs will be met.
• Have fun together as a family. Whether you're watching a movie, throwing a ball, or playing a board game, you're establishing a peaceful way for your kids to spend time together and relate to each other. This can help ease tensions between them and also keeps you involved. Since parental attention is something many kids fight over, fun family activities can help reduce conflict.
• If your children frequently squabble over the same things (such as video games or dibs on the TV remote), post a schedule showing which child "owns" that item at what times during the week. (But if they keep fighting about it, take the "prize" away altogether.)
• If fights between your school-age kids are frequent, hold weekly family meetings in which you repeat the rules about fighting and review past successes in reducing conflicts. Consider establishing a program where the kids earn points toward a fun family-oriented activity when they work together to stop battling.
• Recognize when kids just need time apart from each other and the family dynamics. Try arranging separate play dates or activities for each kid occasionally. And when one child is on a play date, you can spend one-on-one time with another.
Keep in mind that sometimes kids fight to get a parent's attention. In that case, consider taking a time-out of your own. When you leave, the incentive for fighting is gone. Also, when your own fuse is getting short, consider handing the reins over to the other parent, whose patience may be greater at that moment.
Getting Professional Help
In a small percentage of families, the conflict between brothers and sisters is so severe that it disrupts daily functioning, or particularly affects kids emotionally or psychologically. In those cases, it's wise to get help from a mental health professional. Seek help for sibling conflict if it:
• is so severe that it's leading to marital problems
• creates a real danger of physical harm to any family member
• is damaging to the self-esteem or psychological well-being of any family member
• may be related to other significant concerns, such as depression
If you have questions about your kids' fighting, talk with your doctor, who can help you determine whether your family might benefit from professional help and refer you to local behavioral health resources.
http://kidshealth.org/parent/positive/family/sibling_rivalry.html#
Before the baby entered your family, your toddler was told he’d have a wonderful little brother to play with, and how much fun it would be. Then the little brother is born and your toddler is thinking, “Are you kidding me? This squirming, red-faced baby that takes up all your time and attention is supposed to be FUN?” He then “plays” with the baby in the only ways he knows how. He plays catch. You yell at him for throwing toys at the baby. He plays hide-and-seek. You yell at him to get the blanket off the baby. He gives the kid a hug, and you admonish him to be more careful. Is it any wonder that your toddler is confused?
Teach: Your first goal is to protect the baby. Your second, to teach your older child how to interact with his new sibling in proper ways. You can teach your toddler how to play with the baby in the same way you teach him anything else. Talk to him, demonstrate, guide and encourage. Until you feel confident that you’ve achieved your second goal, however, do not leave the children alone together. Yes, I know. It isn’t convenient. But it is necessary, maybe even critical.
Hover: Whenever the children are together, “hover” close by. If you see your child about to get rough, pick up the baby and distract the older sibling with a song, a toy, an activity or a snack. This action protects the baby while helping you avoid a constant string of “Nos,” which may actually encourage the aggressive behavior.
Teach soft touches: Teach the older sibling how to give the baby a back rub. Tell how this kind of touching calms the baby, and praise the older child for a job well done. This lesson teaches the child how to be physical with the baby in a positive way.
Act quickly: Every time you see your child hit, or act roughly with the baby, act quickly. You might firmly announce, “No hitting, time out.” Place the child in a time-out chair with the statement, “You can get up when you can use your hands in the right way.” Allow him to get right up if he wants – as long as he is careful and gentle with the baby. This isn’t punishment, after all. It’s just helping him learn that rough actions aren’t going to be permitted.
Demonstrate: Children learn what they live. Your older child will be watching as you handle the baby and learning from your actions. You are your child’s most important teacher. You are demonstrating in everything you do, and your child will learn most from watching you.
Praise: Whenever you see the older child touching the baby gently, make a positive comment. Make a big fuss about the important “older brother.” Hug and kiss your older child and tell him how proud you are.
Watch your words: Don’t blame everything on the baby. “We can’t go to the park; the baby’s sleeping.” “Be quiet, you’ll wake the baby.” “After I change the baby I’ll help you.” At this point, your child would just as soon sell the baby! Instead, use alternate reasons. “My hands are busy now.” “We’ll go after lunch.” “I’ll help you in three minutes.”
Be supportive: Acknowledge your child’s unspoken feelings, such as “Things sure have changed with the new baby here. It’s going to take us all some time to get used to this.” Keep your comments mild and general. Don’t say, “I bet you hate the new baby.” Instead, say, “It must be hard to have Mommy spending so much time with the baby.” or “I bet you wish we could go to the park now, and not have to wait for the baby to wake up.” When your child knows that you understand her feelings, she’ll have less need to act up to get your attention.
Give extra love: Increase your little demonstrations of love for your child. Say extra I love yous, increase your daily dose of hugs, and find time to read a book or play a game. Temporary regressions or behavior problems are normal, and can be eased with an extra dose of time and attention.
Get ‘em involved: Teach the older sibling how to be helpful with the baby or how to entertain the baby. Let the older sibling open the baby gifts and use the camera to take pictures of the baby. Teach him how to put the baby’s socks on. Let him sprinkle the powder. Praise and encourage whenever possible.
Making each feel special: Avoid comparing siblings, even about seemingly innocent topics such as birth weight, when each first crawled or walked, or who had more hair! Children can interpret these comments as criticisms.
Take a deep breath and be calm. This is a time of adjustment for everyone in the family. Reduce outside activities, relax your housekeeping standards, and focus on your current priority, adjusting to your new family size.
http://pregnancy.about.com/od/secondpregnancy/a/jealousy_2.htm
Monday, 25 March 2013
Breast feeding your baby
Breastfeeding your baby
Please remember that amongst the *Mums World* teamthere are NO medical professionals. Information has been collated fromreputable websites which will be listed at the end of the topic. If you are indoubt we recommend talking to your GP, midwife/health visitor or in more urgentcircumstances contact NHS Direct.
Why breastfeed?
Breast milk is the only natural food designed foryour baby.
Breastfeeding protects your baby from infectionsand diseases.
Breast milk provides health benefits for your baby.
Breastfeeding provides health benefits for mum.
It’s free.
It’s available whenever and wherever your babyneeds a feed.
It’s the right temperature.
It can build a strong physical and emotional bondbetween mother and baby.
It can give you a great sense of achievement.
How to attach your baby to your breast
1. Hold your baby closeto you with their nose level with the nipple.
2. Wait until your baby opens their mouth really wide with the tongue down. Youcan encourage them to do this by gently stroking their top lip.
3. Bring your baby on to your breast.
4. Your baby will tilt their head back and come to your breast chin first. Theyshould take a large mouthful of breast. Your nipple should go towards the roofof their mouth.
Goodattachment
Ifyou see, hearor feel anything that doesn’t seem right, you can gently insert your littlefinger into your baby’s mouth to break the suction and let her come off, thenlet her start again. It helps you both if you can stay calm and relaxed,so remember to breathe and that you can ask a midwife or breastfeeding counsellorfor help if you need to.
How to know that your baby is getting enough milk
After the first few daysthey should also pass at least two yellow stools every day.
The nutrition requirements for breastfeeding mums aresimilar to those for pregnant women. It is recommended that mums continue toeat as they were during their pregnancy (hopefully nutritiously), then addapproximately 300 more calories per day.
What you should see:
baby tucked in as close to you aspossible
chin against your breast, rather thantucked down, so head slightly tipped back
wide open mouth
nose not pressed into your breast
deep jaw movements
if some of the areola (the colouredpart around your nipple) is showing, there will be more above the top lip thanbelow the bottom lip.
What youshouldn’t see:
cheekssucked in
lipslooking like sucking on a straw
squashednipple at the end of the feed when your baby comes off.
What you should hear:
soft sounds of milk being swallowed.
What youshouldn’t hear:
clickingnoises
lipsmacking.
What you may feel:
a feeling of being ‘firmly gripped’
the let-down reflex – a tingling,‘drawing’ feeling in your breasts
a fleeting pain at the start of thefeed in the first few days or weeks. (Imagining a relaxing scene, or gettingsomeone to massage your shoulders, may help in these situations.)
What youshouldn’t feel:
pain whileyour baby is actually feeding, or persisting after the feed.
Your baby will appearcontent and satisfied after most feeds.
They should be healthyand gaining weight after the first two weeks.
Your breasts and nipplesshould not be sore.
After the first fewdays, your baby should have at least six wet nappies a day.
The nutrition requirements for breastfeeding mums are similar to thosefor pregnant women. It is recommended that mums continue to eat as they wereduring their pregnancy (hopefully nutritiously), then add approximately 300more calories per day.
The nutrition requirements for breastfeeding mums are similar to thosefor pregnant women. It is recommended that mums continue to eat as they wereduring their pregnancy (hopefully nutritiously), then add approximately 300more calories per day.
Itis important that calories come from nutritious foods, including lean proteins(beef, poultry, seafood*, eggs, cheese, milk, yogurt, tofu, dried beans);calcium (milk, yogurt cheese); iron (beef, poultry, seafood*, egg yolks, driedbeans); and vitamin C (citrus fruits, cantaloupe, broccoli, potato, tomato,bell pepper.) Eating three meals plus two or three small snacks a day should besufficient in attaining the required calories for breastfeeding.
*The Food and DrugAdministration (FDA) recommends that breastfeeding mothers not eat shark, kingmackerel, tilefish or swordfish due to their high mercury content.
Breastfeeding in public –things to remember
Attitude – you are feedingyour baby as you see fit and have nothing to feel uncomfortable about!
Breastfeeding / Nursing clothing – Make life alittle easier on yourself, wear clothes that won’t expose too much
Baby slings and wraps – another discreet way to help you feel more comfortable.
Baby slings and wraps – another discreet way to help you feel more comfortable.
Did YOU KNOW..,
In England andWales the Equality Act statesthat it is sex discrimination to treat a woman unfavourably because she isbreastfeeding.
DID YOU KNOW...
In Scotland breastfeeding is protected by the Breastfeeding etc. (Scotland) Act 2005 under which it is an offence to stopsomeone in a public place from feeding their child, if under two, with milk.The legislation allows for fines for preventing breastfeeding in public places.
In Scotland breastfeeding is protected by the Breastfeeding etc. (Scotland) Act 2005 under which it is an offence to stopsomeone in a public place from feeding their child, if under two, with milk.The legislation allows for fines for preventing breastfeeding in public places.
Information was collected from http://www.breastfeedingnetwork.org.ukhttp://www.nhs.uk/Conditions/pregnancy-and-baby and http://www.nct.org.uk/
Sunday, 24 March 2013
BONE MARROW DONATION
Bone marrow is a spongy material found inside
your bones. The bone marrow contains immature stem cells, which can
develop into three different types of blood cells:
Red blood cells to carry oxygen to your body
Platelets to help your blood clot, when needed
White blood cells to help fight infection
It is the stem cells in your bone marrow that can benefit the transplant recipient.
In the past, donation of stem cells from bone marrow involved minor surgery to draw marrow from your hipbones. Stems cells were then collected from the donated marrow. Today the most common way of collecting the stem cells is by filtering them directly from your blood. Doctors call this procedure peripheral blood stem cell donation, but many people still refer to it as bone marrow donation, even though bone marrow isn't directly involved.
You may be able to donate your bone marrow stem cells if you're in good health and doctors determine that you're a match for the person who needs a bone marrow stem cell transplant.
Doctors compare the characteristics of the stem cells in your bone marrow to those of the potential recipient to see if the proteins in your cells are similar. A close match increases the chances that the recipient's body will accept your bone marrow cells. Doctors can test your stem cells by examining a small sample of your blood. Your full brothers and sisters are the best match for your bone marrow.
If your bone marrow appears to be a suitable match for the person waiting for a transplant, you'll undergo an examination to ensure that your bone marrow can be transplanted. The doctor will want to rule out any genetic or infectious diseases you might have, since these can be passed on to the bone marrow recipient. The doctor also asks questions about your general health and your family health history to determine whether bone marrow donation will be safe for you.
How do you prepare for bone marrow stem cell donation?
Before you can donate your bone marrow, doctors give you injections of a medication to draw the blood stem cells out from your bone marrow and into your bloodstream. That way they can be easily filtered from your blood.
The medication, filgrastim (Neupogen), is typically given as an injection once a day for four or five days before your bone marrow stem cell donation. Doctors will monitor your blood counts to see how your body is reacting to the filgrastim. They'll also be looking to see if you have an optimal number of stem cells circulating in your blood.
How is bone marrow stem cell donation done?
During bone marrow stem cell donation, a machine collects your blood stem cells through a process called apheresis. Blood is drawn from your arm and runs through a machine that filters out the blood stem cells. Then your blood is returned to your body through your opposite arm.
Apheresis takes four to six hours. You'll typically undergo two to four apheresis sessions, depending on how many blood stem cells are needed.
What can you expect during bone marrow stem cell donation?
Removing blood stem cells from your blood during apheresis doesn't hurt. However, the medication you're given to coax the blood stem cells out of your marrow may cause bone pain — similar to the aches you might feel if you have the flu. On rare occasions the pain may be so severe that you might discontinue the injections. The bone pain goes away once you stop receiving the injections. Other common side effects are fatigue, headache, muscle pain, and tingling around the lips, mouth and fingers.
Risks of bone marrow stem cell donation
Bone marrow stem cell donation is generally safe. Side effects associated with bone marrow stem cell donation include:
Bone pain
Headache
Muscle pain
Fatigue
Insomnia
Nausea and flu-like symptoms
Sweating
Loss of appetite
Tingling
These side effects go away once you complete the bone marrow stem cell donation. If you have small veins in your arms or you have veins with thin walls, your doctor may need to insert a catheter into larger veins in your body — including those in your groin and your neck. This occurs most commonly in small women. Placing a catheter in your larger veins rarely causes side effects, but complications can include:
Air trapped between your lungs and your chest wall (pneumothorax)
Bleeding
Infection
Consider donating bone marrow stem cells to a stranger
Some people in need of a bone marrow stem cell transplant don't have any family members with compatible bone marrow. These people often turn to the National Marrow Donor Program to find a compatible donor. The donor program keeps a database of volunteers who are willing to donate their bone marrow to strangers.
Consider registering to be a donor so that you can help other people in need of a bone marrow stem cell transplant. Even if you weren't a match for your family member, you may be a match for a stranger. For more information on how to be a donor, contact the National Marrow Donor Program.
If any of the following apply to you unfortunately you will be unable to join the bone marrow donation register.
You are aged under 16 or over 30.
You weigh under 8st (51kg) or are severely overweight (a BMI of more than 35).
You (or your partner) are, or think you are, HIV or Human T-cell lymphotropic virus (HTLV) positive or believe you may carry the Hepatitis B or C virus.
You don’t live in the UK.
You have ever been injected with non-prescription drugs including body-building drugs (includes one off use)
You are involved in high-risk sexual practices that may increase your exposure to sexually-transmitted diseases.
You have EVER had any of the following:
Cancer (including leukaemia)
Heart disease or heart surgery
Stroke
Epilepsy (unless you have not had a seizure or taken medication for epilepsy for the last three years)
Any neurological condition
COPD including lung clots
Diabetes (unless this is controlled by diet alone)
Ulcerative colitis or Crohn’s disease
Sarcoidosis
Reiter’s syndrome
Autoimmune conditions including rheumatoid arthritis
Systemic lupus erythematosus (SLE)
Ankylosing spondylitis
Vasculitis
Sickle cell disease
Graves’ disease
Hashimoto’s thyroiditis
Pernicious anaemia
Myasthenia gravis
Schizophrenia
Haemophilia
Thalassaemia
Sciatica
Hepatitis or a positive blood test for hepatitis or HTLV
An allergy to latex or anaesthetic
Special note
If you are pregnant you may join the register but will not be made active until your baby is one year old.
Consider donating bone marrow stem cells to a stranger
Some people in need of a bone marrow stem cell transplant don't have any family members with compatible bone marrow. These people often turn to the National Marrow Donor Program to find a compatible donor. The donor program keeps a database of volunteers who are willing to donate their bone marrow to strangers.
Consider registering to be a donor so that you can help other people in need of a bone marrow stem cell transplant. Even if you weren't a match for your family member, you may be a match for a stranger. For more information on how to be a donor, contact the National Marrow Donor Program.
Red blood cells to carry oxygen to your body
Platelets to help your blood clot, when needed
White blood cells to help fight infection
It is the stem cells in your bone marrow that can benefit the transplant recipient.
In the past, donation of stem cells from bone marrow involved minor surgery to draw marrow from your hipbones. Stems cells were then collected from the donated marrow. Today the most common way of collecting the stem cells is by filtering them directly from your blood. Doctors call this procedure peripheral blood stem cell donation, but many people still refer to it as bone marrow donation, even though bone marrow isn't directly involved.
You may be able to donate your bone marrow stem cells if you're in good health and doctors determine that you're a match for the person who needs a bone marrow stem cell transplant.
Doctors compare the characteristics of the stem cells in your bone marrow to those of the potential recipient to see if the proteins in your cells are similar. A close match increases the chances that the recipient's body will accept your bone marrow cells. Doctors can test your stem cells by examining a small sample of your blood. Your full brothers and sisters are the best match for your bone marrow.
If your bone marrow appears to be a suitable match for the person waiting for a transplant, you'll undergo an examination to ensure that your bone marrow can be transplanted. The doctor will want to rule out any genetic or infectious diseases you might have, since these can be passed on to the bone marrow recipient. The doctor also asks questions about your general health and your family health history to determine whether bone marrow donation will be safe for you.
How do you prepare for bone marrow stem cell donation?
Before you can donate your bone marrow, doctors give you injections of a medication to draw the blood stem cells out from your bone marrow and into your bloodstream. That way they can be easily filtered from your blood.
The medication, filgrastim (Neupogen), is typically given as an injection once a day for four or five days before your bone marrow stem cell donation. Doctors will monitor your blood counts to see how your body is reacting to the filgrastim. They'll also be looking to see if you have an optimal number of stem cells circulating in your blood.
How is bone marrow stem cell donation done?
During bone marrow stem cell donation, a machine collects your blood stem cells through a process called apheresis. Blood is drawn from your arm and runs through a machine that filters out the blood stem cells. Then your blood is returned to your body through your opposite arm.
Apheresis takes four to six hours. You'll typically undergo two to four apheresis sessions, depending on how many blood stem cells are needed.
What can you expect during bone marrow stem cell donation?
Removing blood stem cells from your blood during apheresis doesn't hurt. However, the medication you're given to coax the blood stem cells out of your marrow may cause bone pain — similar to the aches you might feel if you have the flu. On rare occasions the pain may be so severe that you might discontinue the injections. The bone pain goes away once you stop receiving the injections. Other common side effects are fatigue, headache, muscle pain, and tingling around the lips, mouth and fingers.
Risks of bone marrow stem cell donation
Bone marrow stem cell donation is generally safe. Side effects associated with bone marrow stem cell donation include:
Bone pain
Headache
Muscle pain
Fatigue
Insomnia
Nausea and flu-like symptoms
Sweating
Loss of appetite
Tingling
These side effects go away once you complete the bone marrow stem cell donation. If you have small veins in your arms or you have veins with thin walls, your doctor may need to insert a catheter into larger veins in your body — including those in your groin and your neck. This occurs most commonly in small women. Placing a catheter in your larger veins rarely causes side effects, but complications can include:
Air trapped between your lungs and your chest wall (pneumothorax)
Bleeding
Infection
Consider donating bone marrow stem cells to a stranger
Some people in need of a bone marrow stem cell transplant don't have any family members with compatible bone marrow. These people often turn to the National Marrow Donor Program to find a compatible donor. The donor program keeps a database of volunteers who are willing to donate their bone marrow to strangers.
Consider registering to be a donor so that you can help other people in need of a bone marrow stem cell transplant. Even if you weren't a match for your family member, you may be a match for a stranger. For more information on how to be a donor, contact the National Marrow Donor Program.
If any of the following apply to you unfortunately you will be unable to join the bone marrow donation register.
You are aged under 16 or over 30.
You weigh under 8st (51kg) or are severely overweight (a BMI of more than 35).
You (or your partner) are, or think you are, HIV or Human T-cell lymphotropic virus (HTLV) positive or believe you may carry the Hepatitis B or C virus.
You don’t live in the UK.
You have ever been injected with non-prescription drugs including body-building drugs (includes one off use)
You are involved in high-risk sexual practices that may increase your exposure to sexually-transmitted diseases.
You have EVER had any of the following:
Cancer (including leukaemia)
Heart disease or heart surgery
Stroke
Epilepsy (unless you have not had a seizure or taken medication for epilepsy for the last three years)
Any neurological condition
COPD including lung clots
Diabetes (unless this is controlled by diet alone)
Ulcerative colitis or Crohn’s disease
Sarcoidosis
Reiter’s syndrome
Autoimmune conditions including rheumatoid arthritis
Systemic lupus erythematosus (SLE)
Ankylosing spondylitis
Vasculitis
Sickle cell disease
Graves’ disease
Hashimoto’s thyroiditis
Pernicious anaemia
Myasthenia gravis
Schizophrenia
Haemophilia
Thalassaemia
Sciatica
Hepatitis or a positive blood test for hepatitis or HTLV
An allergy to latex or anaesthetic
Special note
If you are pregnant you may join the register but will not be made active until your baby is one year old.
Consider donating bone marrow stem cells to a stranger
Some people in need of a bone marrow stem cell transplant don't have any family members with compatible bone marrow. These people often turn to the National Marrow Donor Program to find a compatible donor. The donor program keeps a database of volunteers who are willing to donate their bone marrow to strangers.
Consider registering to be a donor so that you can help other people in need of a bone marrow stem cell transplant. Even if you weren't a match for your family member, you may be a match for a stranger. For more information on how to be a donor, contact the National Marrow Donor Program.
DONATING BLOOD
Who Can Give Blood?
Most people can give blood. If you are generally in good health, age 17 to
65 (if it's your first time) and weigh at least 50kg (7st 12Ib) you can donate.
However, If you are female, aged under 20 years old and weigh under 65kg (10st
3lb) and are under 168cm (5' 6") in height, we need to estimate your blood
volume before donating. There is no medical reason for an upper weight limit.
However, our current donation beds and chairs are designed to safely
accommodate a person weighing up to 25 stone (350 lb or 158 kg). You will need
to be able to get on and off the donation bed or chair unaided or, if you have
mobility problems, to bring someone along to assist you.
2)Female donors can give every 16 weeks or approximately every 4
months.Male donors can give blood every 12 weeks. That's approximately every 3
months or 4 times in a 12 month period.
Who Can't Give Blood?
Although most people are potentially able to give blood, some are not.There
are a variety of reasons why we might ask you not to give blood, but they fall
into two main categories. Firstly, if evidence suggests that donating blood
could potentially harm you, then to protect your safety we would ask you not to
donate. Secondly, if evidence suggests that your donation could potentially
harm the patient receiving it, then we would ask you not to donate.
This would include the situation where a specific behaviour may have put
you at a higher risk of an infection which could be transmitted to a patient by
blood.
Many of the rules implemented in the UK on who can give blood are a
requirement of European law. However, there are a number of expert committees
that regularly review the evidence relating to exclusions and deferrals from
blood donation. Policies which specifically relate to the safety of blood for
patients are recommended to the Government by the independent advisory
committee on the Safety of Blood, Tissues and Organs (SaBTO). A key part of
their work is to ensure that the policies applied by the UK Blood Services are
based on the best available scientific evidence.
If you are not able to give blood we know this can be disappointing.
However, we hope you will understand that our overriding responsibility is to
ensure the safety of donors and the safety of blood for patients.
Putting safety first
While both donating and receiving blood is extremely safe, these procedures
do have potential risks. So we are constantly assessing and managing these
risks, balancing them with the benefits to patients and donors.
Safety doesn’t begin and end at our blood centres - hospitals, patients and
donors have a role to play as well.
Reducing donor risk
The Donor Health Check (DHC) is designed to helps us spot potential
problems for donor and patient. Together with the medical screening we carry
out at every session, we can assess if it’s safe for someone to donate that
day.
Reducing patient risk
The DHC is our first line of defence. That’s why it’s crucial that you read
this each time because our safety rules or your personal circumstances may have
changed. Our next line of defence is ensuring our staff follow best practice
guidelines on things such as arm cleaning. And of course, back in our labs we
test every donation to pick up any dangerous infections.
Testing to cut risk
Our scientists check every donation for a number of different infections.
Very occasionally the tests fail to detect one that is present, especially if
it’s very recent. The blood may be infectious to a patient, but our tests could
not find the infection (it’s called the window period). That’s why the DHC
questions are so vital to help us spot the risk.
Thanks to these questions, processes and tests, the main risk from a blood
transfusion is not an infection but being given blood of the wrong blood group.
There are many reasons why, at times, you may not be able to give blood.
To help save donors from wasted time and wasted journeys, this page shows the
top reasons why you may be unable to donate blood:
Feel unwell:Chesty cough/cold or an active cold sore?
Antibiotics:Taking a course or completed a course in the past 7 days?
Dental work:Any visit to a dentist, any procedure or seen a hygienist in
the past 7 days?
Cardiovascular:Have you got or had any heart conditions?
Infection:Within the past 2 weeks?
On hospital waiting list:Or currently undergoing medical tests?
Travelled outside the UK (including business) within the past 6 months?
Any new piercings or tattoos in the past 4 months?
Donating blood is simple.
To find out what happens please take a walk through our virtual tour. When
you arrive, you'll be asked to read a number of leaflets and fill in a Donor
Health Check (DHC) questionnaire and may have a confidential discussion with a
nurse. All answers are treated in the strictest confidence.
A tiny drop of blood is taken from your fingertip. This allows us to check
your haemoglobin levels and ensure that giving blood won't make you anaemic.
If all is well, you will be able to donate blood. You will donate about
470ml of blood - this amount of blood is quickly replaced by your body. Learn
more about how the body replaces blood.
Once you have given blood, you should have a short rest before being given
some refreshments usually a drink and biscuits. All in all giving blood
shouldn't take more than an hour.
Please remember to have something to eat and drink before you give blood.
Here is the link to a questionnaire to see if you are able to give blood
How Blood is used?
Whole blood
This is rarely used these days, only really in instances of severe blood
loss. It's usually separated into its individual components.
Red cells
Red blood cells in a blood vessel
The main function of red blood cells is to distribute oxygen to body
tissues and to carry waste carbon dioxide back to the lungs.
These are used in the treatment of all kinds of anaemia which can't be
medically corrected, such as when rheumatoid arthritis or cancer is involved,
when red cells break down in the newborn and for sickle cell disease.
They're also essential to replace lost red cells due to blood loss in
accidents, surgery and after childbirth.
Here is the link where all the information came from it has a post code
checker to see when the van will be in your area and has all the information
and phone numbers you need,
Friday, 22 March 2013
Cystic Fibrosis - all you need to know from baby to adult
What is Cystic Fibrosis?
Cystic Fibrosis (CF) is one of the UK's most common life-threatening inherited diseases.
It is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body.
Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.
Over 9,000 people in the UK have Cystic Fibrosis.
If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.
Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population.
Over 95% of the UK CF population is Caucasian, but CF affects many ethnic groups.
Each week, five babies are born with Cystic Fibrosis.
Each week, two young lives are lost to Cystic Fibrosis.
Currently half of the CF population will live past 41 years of age, and improvements in treatments mean a baby born today is expected to live even longer.
How is Cystic Fibrosis diagnosed?
Cystic Fibrosis is increasingly being diagnosed through screening, but some babies and older children (and even adults) are diagnosed following unexplained illness.
There are three types of screening for Cystic Fibrosis: newborn screening, carrier testing and antenatal testing.
Newborn Testing
Following a campaign by the Cystic Fibrosis Trust, the National Screening Committee recommended that all babies should be screened for Cystic Fibrosis. This has now been implemented across the whole of the UK.
The test is a heel-prick to sample blood as part of the normal Guthrie test carried out on all children. The sooner CF is diagnosed, the sooner appropriate treatment can begin.
For more information please see the UK Newborn Screening Programme Centre.
Carrier Testing
A simple mouthwash test can be taken to tell if you are a carrier. This is important if a relative has CF or is a known carrier. It is very important to have the test if your partner is a known carrier.
Antenatal Testing
This test is used early in pregnancy to tell whether a baby has Cystic Fibrosis. It is usually offered to mothers who are recognised as being at a high risk of having a child with Cystic Fibrosis.
Other tests
Other tests for Cystic Fibrosis are the sweat test (people with CF have more salt in their sweat, which can be detected) or a genetic test, which is a swab taken by gently rubbing the inside of the cheek to check for the faulty CF gene.
If your partner is a carrier and you want to be tested, the genetic interest group has a useful list of services.
Symptoms of Cystic Fibrosis
Cystic Fibrosis causes the body to produce thick secretions that particularly affect the lungs and digestive tract.
Symptoms of CF can include a troublesome cough, repeated chest infections, prolonged diarrhoea and poor weight gain. These symptoms are not unique to Cystic Fibrosis.
Cystic Fibrosis affects a number of organs.
Lungs
It is common for people with CF to encounter some difficulties with their lungs. A combination of physiotherapy and medication can help control lung infections and prevent lung damage. To avoid the risk of cross-infection, it is recommended that people with CF do not come into close contact with others with Cystic Fibrosis.
Digestive system
Cystic Fibrosis affects the pancreas, which makes it difficult for people with CF to digest food. This can cause malnutrition, which can lead to poor growth, physical weakness and delayed puberty. There is medication that can compensate for the failure of the pancreas.
In older patients, insulin production can become deficient due to increasing pancreatic disease. Some develop CF related diabetes mellitus and their blood sugar levels are no longer controlled. This rarely happens to children with Cystic Fibrosis.
Common symptoms of diabetes include thirst, hunger, weight loss and excessive need to urinate, but some people do not show obvious symptoms of diabetes.
Other Affected Organs
In every ten babies born with CF, one is ill in the first few days of life with a bowel obstruction called meconium ileus. In these cases, the meconium (a thick black material present in the bowels of all newborn babies) is so thick that it blocks the bowel instead of passing through. Babies with meconium ileus often need an urgent operation to relieve and bypass the blockage.
People with CF are prone to developing bone disease (thin, brittle bones) due to the nutritional and other problems involved with the disease. Adults with CF are at an increased risk of bone disease because of the adverse effects of steroids taken to control lung disease.
Although Cystic Fibrosis does not cause sexual impotency, it can lead to fertility problems. In most men with CF, the tubes that carry sperm are blocked, which causes infertility. Because underweight women are more likely to have irregular menstrual cycles, the nutritional problems associated with CF may affect fertility. Women with CF do produce healthy, fertile eggs so effective contraception is necessary.
Cystic Fibrosis can cause the blockage of small ducts in the liver. This only happens to approximately 8% of people who have CF, but it is a serious health risk and may necessitate a liver transplant
Physiotherapy
Physiotherapy is a way of clearing the thick, sticky mucus from the lungs. Parents are taught how to do this for their child by the physiotherapist in the CF clinic. Adults with CF can learn how to administer their own physiotherapy.
Why is chest physiotherapy important?
Chest physiotherapy is important because helps to prevent the thick, sticky lung secretions from blocking the air tubes. This helps to reduce infection and prevent lung damage.
What different physiotherapy techniques are there?
There are a wide variety of airway clearance techniques and a Specialist CF Physiotherapist will assess a person with CF and advise on the most appropriate technique to use, and also on the length and frequency of treatment sessions. The technique used may change as you get older or as your disease changes. The amount of mucus you clear will also vary as your disease progresses.
Some techniques are done without any equipment and focus on specific breathing exercises:
Active Cycle of breathing Techniques (ACBT)
Autogenic Drainage
Other techniques use a device to aid clearance of mucus, by using positive pressure to hold open the airways, and some also create vibrations within the airways:
Positive Expiratory Pressure (PEP)
Oscillating Positive Expiratory Pressure - e.g Flutter®, Acapella®
Some techniques use large pieces of equipment which can be very expensive and therefore may only be available for use in hospital:
High frequency chest wall oscillation (HFCWO) - an electric air compressor connects to an inflatable jacket (vest) to vibrate your chest.
How much physiotherapy is needed?
The length of treatment sessions varies according to need. Daily physiotherapy is usually required and if you have a chest infection you may need to increase the amount of airway clearance you do. If there are few or no secretions, treatment sessions may only need to last 10-15 minutes. If there are many secretions, it could take as long as 45-60 minutes.
The number of treatment sessions should be varied. Most people do two a day when all is well, increasing to four a day when necessary. If no secretions are present, some people with CF only need physiotherapy once a day.
Your physiotherapist can advise you on how much physiotherapy is appropriate.
When should physiotherapy start?
Physiotherapy should start from the time of diagnosis.
Who should do physiotherapy?
At first, the adults that care for the child should do it. In time, relatives or friends should learn so that no one person becomes indispensable.
Breathing exercises can be introduced in the form of a game from the age of two or three. From around the age of nine, most children can start doing part of their physiotherapy for themselves.
Most teenagers become completely independent and only require help if they have increased secretions.
Nutrition
In many people with Cystic Fibrosis, the small channels that carry the digestive juices become clogged with sticky mucus. The enzymes then build up in the pancreas, which becomes inflamed and damaged over time.
The effect of Cystic Fibrosis on the pancreas varies from person to person and around 5-10% of people with CF retain some useful function. Most people have to take enzyme pills to help digest food.
A suitable diet is also very important for people with Cystic Fibrosis. A good body weight can help people to fight chest infections and help the body have reserves should they start losing weight when they are ill.
The right diet for people with Cystic Fibrosis is high in energy (kilocalories), but the exact amount will vary by age and from person to person. Further information can be found in the sections for babies, children and adults or from our publications library.
Exercise and Cystic Fibrosis
Physical activity is an important part of the treatment process. Exercise is particularly important for people with CF as it prevents deterioration of the lungs and improves physical bulk and strength. Children with CF should be encouraged to take part in as much physical activity as possible - ideally types of exercise that make you out of breath such as running, swimming, football or tennis.
It is important to inform teachers at school that exercise should be encouraged, as they may be unsure whether exercise is good for people with Cystic Fibrosis. For more information about how CF may affect someone's schooling, see the CF at school page.
Posture and chest mobility
The spine, ribcage and shoulders should remain fully flexible as far as possible and good posture should be maintained.
Older children or adults may need to do stretching exercises to maintain full movement of the joints and muscles around the shoulders and chest.
Younger children can do the same by taking part in games or activities that involve moving and stretching the trunk and arms. Activities like wheelbarrow racing make good stretching exercises, as well as helping to drain secretions.
Your hospital physiotherapist can advise you on the right exercises and activities.
Medication for Cystic Fibrosis
Cystic Fibrosis affects the lungs and the digestive tract - these areas are likely to require medication. Infections can be cleared or controlled by a variety of drugs. Here is a guide to the most commonly used medication for people with Cystic Fibrosis.
Lungs
Medication can be administered in various ways: inhaled into the lungs using nebulisers, taken orally or taken intravenously (injected). These drugs treat the lungs in the following ways:
Bronchodilator drugs open the airways by relaxing the surrounding muscle. They relieve tightness and shortness of breath.
Antibiotics help to treat or control persistent infection.
Steroids reduce inflammation in the airways.
DNase breaks down mucus making it easier to clear
Digestive system
Cystic Fibrosis affects the pancreas, so enzyme pills should be taken with meals and snacks to replace pancreatic enzymes and enable people with CF to gain more energy from the food they eat. Your dietitian or doctor can advise you on the appropriate type/dosage of enzyme supplement.
Nutritional supplements such as high-energy drinks can also help to compensate for ineffective digestion. See the nutrition pages for more details.
Anyone suffering from CF related diabetes will need to balance food intake with appropriate diabetic treatment such as tablets or insulin.
Other affected areas
Bones can be affected by a lack of minerals, which can cause osteoporosis (weak/brittle bones). Bisphosphonates, which are used to treat osteoporosis in post-menopausal women, have been shown to be beneficial for the treatment of osteoporosis in Cystic Fibrosis.
Research is being carried out to investigate the benefits of high doses of vitamin D and calcium.
If someone with CF is having liver problems, they will be treated in the same way as other people with this condition. Promising results have been reported following early treatment with ursodeoxycholic acid.
Travel and Cystic Fibrosis
As medications and healthcare for those with Cystic Fibrosis have improved, it is now common for people with Cystic Fibrosis and their families to travel abroad. However there are some issues to consider when travelling if you or a family member has Cystic Fibrosis.
Travel insurance
Medication - including taking sufficient, sterilising tablets, salt tablets, antibiotics etc
Air travel
Oxygen
Nebulisers and voltage
Clothing
Visits to theme parks
Driving abroad
CF Centres abroad
Financial assistance
Specialised holiday funds
CF and School
This section may be helpful for teachers who have little or no experience of children with CF or for the parents of CF children who are starting or changing school.
It is important to remember that CF affects each child in different ways with varying degrees of severity. Each child's health can change considerably from month to month or even from day to day.
There are some symptoms that may be particularly relevant at school.
The most noticeable feature of CF is a persistent cough. Although it is not infectious, it may be embarrassing in front of other children, especially as a severe coughing attack occasionally leads to coughing up mucus or vomiting.
Parents or other carers may have to come into school to help their child with daily physiotherapy. Nebuliser treatment may also be necessary.
The number of physiotherapy sessions that take place each day varies according to the child's current state of health. The length of each session will vary from 15 minutes to an hour.
As CF causes malfunctioning of the pancreas, special supplements need to be taken with all meals and snacks. These are available in capsule form and are often taken in large quantities.
Education
Children with CF are as academically able as their peers, so teachers should expect similar standards, but hospitalisation or chest infections can result in prolonged absence from school, so extra help may be needed to catch up with the rest of the class. Examining boards make certain allowances for pupils with Cystic Fibrosis.
Some older children take advantage of portable intravenous antibiotic equipment, which enables them to attend lessons more regularly.
Physical exercise is beneficial for children with CF so they should participate in Games and PE lessons. Illness can result in loss of energy, which should be taken into consideration.
Social and psychological aspects
Children with CF may be teased or picked on at school because of their persistent cough and the fact that they may be underweight and small for their age. Taking tablets and capsules with their meals may also be embarrassing for them.
Physiotherapy is very time consuming, possibly to the detriment of the child's social life, though children with CF often find supportive friends who help with care and physiotherapy.
During teenage years, there is the possibility that physiotherapy and diet could be neglected. Some people with CF experience delayed sexual maturity and this may cause anxiety or insecurity.
Teenagers may require sympathetic treatment and counselling to deal with some of these issues.
Cystic Fibrosis requires a degree of special involvement from teachers. This could include consultations with parents or even practical help.
Examinations
Although children with CF are as academically as able as their peers, some may have special educational needs. Cystic Fibrosis may also prevent or hinder the child from using certain educational facilities.
The joint council for the GCSE (standing agreement number four) advises that 'Examining groups are required to take all reasonable steps to enable candidates with permanent, long-term, or temporary handicaps or indispositions to demonstrate their attainments.' This means that under suitable safeguards, a grade can be awarded if a candidate is absent from an exam for legitimate reasons. Additional time may be permitted (normally up to 25%) for all types of examination.
If necessary, a candidate can receive treatment during a supervised break. Arrangements can also be made (subject to examining board approval) for candidates to take examinations outside their own centre (ie at home or in hospital).
Disabled candidates may be given additional time to complete course work, or assigned a reduced amount of course work. Again, this is subject to the approval of the examining board.
In order for a pupil to be considered for concessions at GCSE level, they need to have documented their special needs over a number of years. A child with CF should be included on the school's register of special needs as soon as possible.
It is advisable to keep a record of any absences from school, so it can be presented at the request of the examining board.
Cystic Fibrosis at college or university
As people with CF are living longer, healthier and more independent lives many more are thinking of going into higher education.
Going to university can enable you to realise academic potential, broaden your career prospects, secure financial independence and achieve personal satisfaction. It also offers the chance to make new friends, think differently about yourself and the world and have a great time!
Although CF will not prevent you from going to university, there are issues that you should consider when deciding where to apply as it is important to ensure you are able to continue with all of your treatments and care routines whilst away from home.
Transporting your oxygen cylinders
An oxygen cylinder company has recently been carrying out telephone conferences with people with Cystic Fibrosis. They have produced this helpful advice on transporting your oxygen.
You can transport your cylinders by car provided you follow this advice:
Always display a warning sticker in the back (offside rear) window. You will find this in your Patient Pack or you can obtain one by calling the oxygen company on 0800 373580 between 8.00 am and 5.30 pm Monday to Friday.
Inform your insurance company that you will be carrying oxygen.
Ensure that the cylinders are secured safely in the boot of the vehicle, behind the front seats or on a back seat with a secure fastening.
Never transport cylinders in the front passenger seat.
If transporting several portable cylinders, always carry them in a green safety box. Your oxygen company can provide this box if needed.
Individual portable cylinders should be kept in the carry bag provided to you free of charge.
Never use oxygen in a fuel station and never allow anyone to smoke while using oxygen in the car.
Cross-infection
Cross-infection is an issue of considerable concern for the CF community. Those with CF attract different bacteria or 'bugs' that grow in their lungs. These 'bugs' are rarely harmful to those who do not have CF but may be harmful to others who have CF but who do not have the same 'bugs'.
This became a real problem in the 1990s in relation to Burkholderia cepacia complex, some strains of which can cause a very serious health problem in those with Cystic Fibrosis. It was agreed that those with B. cepacia complex should be segregated from other people with Cystic Fibrosis. It subsequently emerged that there are several strains of B. cepacia complex and some are more serious than others so people with B. cepacia complex were then further segregated according to the strain they had.
Pseudomonas aeruginosa is another 'bug' people with CF regularly acquire, mostly from the environment. This can usually be eradicated or kept at bay with early antibiotic treatment. It is expected that CF patients will pick up Pseudomonas from time to time. There are thousands of different strains of Pseudomonas. If this 'bug' gets well established and starts to become resistant to antibiotics, it can cause problems.
There is some concern that CF patients are more likely to pick up strains of Pseudomonas from each other that are more difficult to treat than strains picked up from the environment. For this reason, CF Centres and Clinics are now encouraged to offer separate clinics for CF patients according whether or not they have Pseudomonas and if so, whether the particular strain is known to be transmissible, that is, has been shown to have the ability under some circumstances to pass from patient to patient.
'Bugs' such as B. cepacia complex and Pseudomonas aeruginosa can be transmitted from person to person by close personal contact, such as sharing rooms, sharing medical equipment, sharing cutlery or crockery, and by kissing or coughing.
There is little risk of transmission of 'bugs' in an outdoor environment, but travelling with other people with CF in a car or a coach, or meeting them socially would introduce a higher level of risk.
People who have had a lung transplant need to take powerful medication for the rest of their lives to dampen down their immune system and to protect the transplanted lungs from rejection. This medication, which is called immunosuppression, has the unwanted effect of increasing the risk of infection in those taking it.
It is therefore important that after having a lung transplant people avoid, where possible, any non-essential contact with anyone who has an active infection, especially winter bugs, colds and flu. Although the annual flu jab is essential to protect against severe flu it does not protect people from seasonal bugs and colds.
After a lung transplant it might also be necessary to avoid close contact with other people with CF if their lungs are infected with particular bacteria or fungi. This is decided on an individual basis and should be discussed with the transplant centre. Some people after lung transplant may continue to carry bacteria or fungi in their sinuses or upper airway or their newly transplanted lungs which might pose a risk to other people who have had a lung transplant. If this is the case some restrictions on contact with them might be advised. Again this is individual and should be discussed with the transplant centre.
Transplants and Cystic Fibrosis
The success rate of lung transplantation for CF patients is encouraging but like any other major surgery, transplants carry considerable risks and a transplant is appropriate only for a patient who is severely ill and has tried all other forms of conventional treatment. To these patients, lung transplantation offers a better quality of life.
There is a shortage of donor organs available for those awaiting transplants. If more people carry donor cards, then more lives can be saved in this way.
Transplantation doesn't remove all concern - the risk of rejection or infection still remains.
Anyone considering transplantation should consult doctors or counsellors at a local CF clinic. For more information about transplantation, you can download the CF Trust's factsheet from our publications library. You can read about a research project in transplantation and more about what we are doing to increase donations.
Give the gift of life. Join the NHS Organ Donor Register.
Organ Donor Line 0300 123 23 23
Right now more than 8,000 people in the UK need an organ transplant that could save or improve their life, but each year around 400 people die while waiting for a transplant. If you want to help someone live after your death, sign up to the register now.
Find out more from NHS Blood and Transplant, NHS Choices and Live Life Then Give Life.
A moving new book of letters written from transplant patients to their donors and donor relatives has been launched to show the positive side of organ donation and encourage more people to sign up to the organ register. Thank you for life is published by the Royal College of Physicians (RCP) for NHS Blood and Transplant (NHSBT) with support from the Department of Health and highlights the long-standing gratitude felt by those who receive donated organs.
http://www.cftrust.org.uk/
Sent with love from my iPad xxx
Cystic Fibrosis (CF) is one of the UK's most common life-threatening inherited diseases.
It is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body.
Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.
Over 9,000 people in the UK have Cystic Fibrosis.
If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.
Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population.
Over 95% of the UK CF population is Caucasian, but CF affects many ethnic groups.
Each week, five babies are born with Cystic Fibrosis.
Each week, two young lives are lost to Cystic Fibrosis.
Currently half of the CF population will live past 41 years of age, and improvements in treatments mean a baby born today is expected to live even longer.
How is Cystic Fibrosis diagnosed?
Cystic Fibrosis is increasingly being diagnosed through screening, but some babies and older children (and even adults) are diagnosed following unexplained illness.
There are three types of screening for Cystic Fibrosis: newborn screening, carrier testing and antenatal testing.
Newborn Testing
Following a campaign by the Cystic Fibrosis Trust, the National Screening Committee recommended that all babies should be screened for Cystic Fibrosis. This has now been implemented across the whole of the UK.
The test is a heel-prick to sample blood as part of the normal Guthrie test carried out on all children. The sooner CF is diagnosed, the sooner appropriate treatment can begin.
For more information please see the UK Newborn Screening Programme Centre.
Carrier Testing
A simple mouthwash test can be taken to tell if you are a carrier. This is important if a relative has CF or is a known carrier. It is very important to have the test if your partner is a known carrier.
Antenatal Testing
This test is used early in pregnancy to tell whether a baby has Cystic Fibrosis. It is usually offered to mothers who are recognised as being at a high risk of having a child with Cystic Fibrosis.
Other tests
Other tests for Cystic Fibrosis are the sweat test (people with CF have more salt in their sweat, which can be detected) or a genetic test, which is a swab taken by gently rubbing the inside of the cheek to check for the faulty CF gene.
If your partner is a carrier and you want to be tested, the genetic interest group has a useful list of services.
Symptoms of Cystic Fibrosis
Cystic Fibrosis causes the body to produce thick secretions that particularly affect the lungs and digestive tract.
Symptoms of CF can include a troublesome cough, repeated chest infections, prolonged diarrhoea and poor weight gain. These symptoms are not unique to Cystic Fibrosis.
Cystic Fibrosis affects a number of organs.
Lungs
It is common for people with CF to encounter some difficulties with their lungs. A combination of physiotherapy and medication can help control lung infections and prevent lung damage. To avoid the risk of cross-infection, it is recommended that people with CF do not come into close contact with others with Cystic Fibrosis.
Digestive system
Cystic Fibrosis affects the pancreas, which makes it difficult for people with CF to digest food. This can cause malnutrition, which can lead to poor growth, physical weakness and delayed puberty. There is medication that can compensate for the failure of the pancreas.
In older patients, insulin production can become deficient due to increasing pancreatic disease. Some develop CF related diabetes mellitus and their blood sugar levels are no longer controlled. This rarely happens to children with Cystic Fibrosis.
Common symptoms of diabetes include thirst, hunger, weight loss and excessive need to urinate, but some people do not show obvious symptoms of diabetes.
Other Affected Organs
In every ten babies born with CF, one is ill in the first few days of life with a bowel obstruction called meconium ileus. In these cases, the meconium (a thick black material present in the bowels of all newborn babies) is so thick that it blocks the bowel instead of passing through. Babies with meconium ileus often need an urgent operation to relieve and bypass the blockage.
People with CF are prone to developing bone disease (thin, brittle bones) due to the nutritional and other problems involved with the disease. Adults with CF are at an increased risk of bone disease because of the adverse effects of steroids taken to control lung disease.
Although Cystic Fibrosis does not cause sexual impotency, it can lead to fertility problems. In most men with CF, the tubes that carry sperm are blocked, which causes infertility. Because underweight women are more likely to have irregular menstrual cycles, the nutritional problems associated with CF may affect fertility. Women with CF do produce healthy, fertile eggs so effective contraception is necessary.
Cystic Fibrosis can cause the blockage of small ducts in the liver. This only happens to approximately 8% of people who have CF, but it is a serious health risk and may necessitate a liver transplant
Physiotherapy
Physiotherapy is a way of clearing the thick, sticky mucus from the lungs. Parents are taught how to do this for their child by the physiotherapist in the CF clinic. Adults with CF can learn how to administer their own physiotherapy.
Why is chest physiotherapy important?
Chest physiotherapy is important because helps to prevent the thick, sticky lung secretions from blocking the air tubes. This helps to reduce infection and prevent lung damage.
What different physiotherapy techniques are there?
There are a wide variety of airway clearance techniques and a Specialist CF Physiotherapist will assess a person with CF and advise on the most appropriate technique to use, and also on the length and frequency of treatment sessions. The technique used may change as you get older or as your disease changes. The amount of mucus you clear will also vary as your disease progresses.
Some techniques are done without any equipment and focus on specific breathing exercises:
Active Cycle of breathing Techniques (ACBT)
Autogenic Drainage
Other techniques use a device to aid clearance of mucus, by using positive pressure to hold open the airways, and some also create vibrations within the airways:
Positive Expiratory Pressure (PEP)
Oscillating Positive Expiratory Pressure - e.g Flutter®, Acapella®
Some techniques use large pieces of equipment which can be very expensive and therefore may only be available for use in hospital:
High frequency chest wall oscillation (HFCWO) - an electric air compressor connects to an inflatable jacket (vest) to vibrate your chest.
How much physiotherapy is needed?
The length of treatment sessions varies according to need. Daily physiotherapy is usually required and if you have a chest infection you may need to increase the amount of airway clearance you do. If there are few or no secretions, treatment sessions may only need to last 10-15 minutes. If there are many secretions, it could take as long as 45-60 minutes.
The number of treatment sessions should be varied. Most people do two a day when all is well, increasing to four a day when necessary. If no secretions are present, some people with CF only need physiotherapy once a day.
Your physiotherapist can advise you on how much physiotherapy is appropriate.
When should physiotherapy start?
Physiotherapy should start from the time of diagnosis.
Who should do physiotherapy?
At first, the adults that care for the child should do it. In time, relatives or friends should learn so that no one person becomes indispensable.
Breathing exercises can be introduced in the form of a game from the age of two or three. From around the age of nine, most children can start doing part of their physiotherapy for themselves.
Most teenagers become completely independent and only require help if they have increased secretions.
Nutrition
In many people with Cystic Fibrosis, the small channels that carry the digestive juices become clogged with sticky mucus. The enzymes then build up in the pancreas, which becomes inflamed and damaged over time.
The effect of Cystic Fibrosis on the pancreas varies from person to person and around 5-10% of people with CF retain some useful function. Most people have to take enzyme pills to help digest food.
A suitable diet is also very important for people with Cystic Fibrosis. A good body weight can help people to fight chest infections and help the body have reserves should they start losing weight when they are ill.
The right diet for people with Cystic Fibrosis is high in energy (kilocalories), but the exact amount will vary by age and from person to person. Further information can be found in the sections for babies, children and adults or from our publications library.
Exercise and Cystic Fibrosis
Physical activity is an important part of the treatment process. Exercise is particularly important for people with CF as it prevents deterioration of the lungs and improves physical bulk and strength. Children with CF should be encouraged to take part in as much physical activity as possible - ideally types of exercise that make you out of breath such as running, swimming, football or tennis.
It is important to inform teachers at school that exercise should be encouraged, as they may be unsure whether exercise is good for people with Cystic Fibrosis. For more information about how CF may affect someone's schooling, see the CF at school page.
Posture and chest mobility
The spine, ribcage and shoulders should remain fully flexible as far as possible and good posture should be maintained.
Older children or adults may need to do stretching exercises to maintain full movement of the joints and muscles around the shoulders and chest.
Younger children can do the same by taking part in games or activities that involve moving and stretching the trunk and arms. Activities like wheelbarrow racing make good stretching exercises, as well as helping to drain secretions.
Your hospital physiotherapist can advise you on the right exercises and activities.
Medication for Cystic Fibrosis
Cystic Fibrosis affects the lungs and the digestive tract - these areas are likely to require medication. Infections can be cleared or controlled by a variety of drugs. Here is a guide to the most commonly used medication for people with Cystic Fibrosis.
Lungs
Medication can be administered in various ways: inhaled into the lungs using nebulisers, taken orally or taken intravenously (injected). These drugs treat the lungs in the following ways:
Bronchodilator drugs open the airways by relaxing the surrounding muscle. They relieve tightness and shortness of breath.
Antibiotics help to treat or control persistent infection.
Steroids reduce inflammation in the airways.
DNase breaks down mucus making it easier to clear
Digestive system
Cystic Fibrosis affects the pancreas, so enzyme pills should be taken with meals and snacks to replace pancreatic enzymes and enable people with CF to gain more energy from the food they eat. Your dietitian or doctor can advise you on the appropriate type/dosage of enzyme supplement.
Nutritional supplements such as high-energy drinks can also help to compensate for ineffective digestion. See the nutrition pages for more details.
Anyone suffering from CF related diabetes will need to balance food intake with appropriate diabetic treatment such as tablets or insulin.
Other affected areas
Bones can be affected by a lack of minerals, which can cause osteoporosis (weak/brittle bones). Bisphosphonates, which are used to treat osteoporosis in post-menopausal women, have been shown to be beneficial for the treatment of osteoporosis in Cystic Fibrosis.
Research is being carried out to investigate the benefits of high doses of vitamin D and calcium.
If someone with CF is having liver problems, they will be treated in the same way as other people with this condition. Promising results have been reported following early treatment with ursodeoxycholic acid.
Travel and Cystic Fibrosis
As medications and healthcare for those with Cystic Fibrosis have improved, it is now common for people with Cystic Fibrosis and their families to travel abroad. However there are some issues to consider when travelling if you or a family member has Cystic Fibrosis.
Travel insurance
Medication - including taking sufficient, sterilising tablets, salt tablets, antibiotics etc
Air travel
Oxygen
Nebulisers and voltage
Clothing
Visits to theme parks
Driving abroad
CF Centres abroad
Financial assistance
Specialised holiday funds
CF and School
This section may be helpful for teachers who have little or no experience of children with CF or for the parents of CF children who are starting or changing school.
It is important to remember that CF affects each child in different ways with varying degrees of severity. Each child's health can change considerably from month to month or even from day to day.
There are some symptoms that may be particularly relevant at school.
The most noticeable feature of CF is a persistent cough. Although it is not infectious, it may be embarrassing in front of other children, especially as a severe coughing attack occasionally leads to coughing up mucus or vomiting.
Parents or other carers may have to come into school to help their child with daily physiotherapy. Nebuliser treatment may also be necessary.
The number of physiotherapy sessions that take place each day varies according to the child's current state of health. The length of each session will vary from 15 minutes to an hour.
As CF causes malfunctioning of the pancreas, special supplements need to be taken with all meals and snacks. These are available in capsule form and are often taken in large quantities.
Education
Children with CF are as academically able as their peers, so teachers should expect similar standards, but hospitalisation or chest infections can result in prolonged absence from school, so extra help may be needed to catch up with the rest of the class. Examining boards make certain allowances for pupils with Cystic Fibrosis.
Some older children take advantage of portable intravenous antibiotic equipment, which enables them to attend lessons more regularly.
Physical exercise is beneficial for children with CF so they should participate in Games and PE lessons. Illness can result in loss of energy, which should be taken into consideration.
Social and psychological aspects
Children with CF may be teased or picked on at school because of their persistent cough and the fact that they may be underweight and small for their age. Taking tablets and capsules with their meals may also be embarrassing for them.
Physiotherapy is very time consuming, possibly to the detriment of the child's social life, though children with CF often find supportive friends who help with care and physiotherapy.
During teenage years, there is the possibility that physiotherapy and diet could be neglected. Some people with CF experience delayed sexual maturity and this may cause anxiety or insecurity.
Teenagers may require sympathetic treatment and counselling to deal with some of these issues.
Cystic Fibrosis requires a degree of special involvement from teachers. This could include consultations with parents or even practical help.
Examinations
Although children with CF are as academically as able as their peers, some may have special educational needs. Cystic Fibrosis may also prevent or hinder the child from using certain educational facilities.
The joint council for the GCSE (standing agreement number four) advises that 'Examining groups are required to take all reasonable steps to enable candidates with permanent, long-term, or temporary handicaps or indispositions to demonstrate their attainments.' This means that under suitable safeguards, a grade can be awarded if a candidate is absent from an exam for legitimate reasons. Additional time may be permitted (normally up to 25%) for all types of examination.
If necessary, a candidate can receive treatment during a supervised break. Arrangements can also be made (subject to examining board approval) for candidates to take examinations outside their own centre (ie at home or in hospital).
Disabled candidates may be given additional time to complete course work, or assigned a reduced amount of course work. Again, this is subject to the approval of the examining board.
In order for a pupil to be considered for concessions at GCSE level, they need to have documented their special needs over a number of years. A child with CF should be included on the school's register of special needs as soon as possible.
It is advisable to keep a record of any absences from school, so it can be presented at the request of the examining board.
Cystic Fibrosis at college or university
As people with CF are living longer, healthier and more independent lives many more are thinking of going into higher education.
Going to university can enable you to realise academic potential, broaden your career prospects, secure financial independence and achieve personal satisfaction. It also offers the chance to make new friends, think differently about yourself and the world and have a great time!
Although CF will not prevent you from going to university, there are issues that you should consider when deciding where to apply as it is important to ensure you are able to continue with all of your treatments and care routines whilst away from home.
Transporting your oxygen cylinders
An oxygen cylinder company has recently been carrying out telephone conferences with people with Cystic Fibrosis. They have produced this helpful advice on transporting your oxygen.
You can transport your cylinders by car provided you follow this advice:
Always display a warning sticker in the back (offside rear) window. You will find this in your Patient Pack or you can obtain one by calling the oxygen company on 0800 373580 between 8.00 am and 5.30 pm Monday to Friday.
Inform your insurance company that you will be carrying oxygen.
Ensure that the cylinders are secured safely in the boot of the vehicle, behind the front seats or on a back seat with a secure fastening.
Never transport cylinders in the front passenger seat.
If transporting several portable cylinders, always carry them in a green safety box. Your oxygen company can provide this box if needed.
Individual portable cylinders should be kept in the carry bag provided to you free of charge.
Never use oxygen in a fuel station and never allow anyone to smoke while using oxygen in the car.
Cross-infection
Cross-infection is an issue of considerable concern for the CF community. Those with CF attract different bacteria or 'bugs' that grow in their lungs. These 'bugs' are rarely harmful to those who do not have CF but may be harmful to others who have CF but who do not have the same 'bugs'.
This became a real problem in the 1990s in relation to Burkholderia cepacia complex, some strains of which can cause a very serious health problem in those with Cystic Fibrosis. It was agreed that those with B. cepacia complex should be segregated from other people with Cystic Fibrosis. It subsequently emerged that there are several strains of B. cepacia complex and some are more serious than others so people with B. cepacia complex were then further segregated according to the strain they had.
Pseudomonas aeruginosa is another 'bug' people with CF regularly acquire, mostly from the environment. This can usually be eradicated or kept at bay with early antibiotic treatment. It is expected that CF patients will pick up Pseudomonas from time to time. There are thousands of different strains of Pseudomonas. If this 'bug' gets well established and starts to become resistant to antibiotics, it can cause problems.
There is some concern that CF patients are more likely to pick up strains of Pseudomonas from each other that are more difficult to treat than strains picked up from the environment. For this reason, CF Centres and Clinics are now encouraged to offer separate clinics for CF patients according whether or not they have Pseudomonas and if so, whether the particular strain is known to be transmissible, that is, has been shown to have the ability under some circumstances to pass from patient to patient.
'Bugs' such as B. cepacia complex and Pseudomonas aeruginosa can be transmitted from person to person by close personal contact, such as sharing rooms, sharing medical equipment, sharing cutlery or crockery, and by kissing or coughing.
There is little risk of transmission of 'bugs' in an outdoor environment, but travelling with other people with CF in a car or a coach, or meeting them socially would introduce a higher level of risk.
People who have had a lung transplant need to take powerful medication for the rest of their lives to dampen down their immune system and to protect the transplanted lungs from rejection. This medication, which is called immunosuppression, has the unwanted effect of increasing the risk of infection in those taking it.
It is therefore important that after having a lung transplant people avoid, where possible, any non-essential contact with anyone who has an active infection, especially winter bugs, colds and flu. Although the annual flu jab is essential to protect against severe flu it does not protect people from seasonal bugs and colds.
After a lung transplant it might also be necessary to avoid close contact with other people with CF if their lungs are infected with particular bacteria or fungi. This is decided on an individual basis and should be discussed with the transplant centre. Some people after lung transplant may continue to carry bacteria or fungi in their sinuses or upper airway or their newly transplanted lungs which might pose a risk to other people who have had a lung transplant. If this is the case some restrictions on contact with them might be advised. Again this is individual and should be discussed with the transplant centre.
Transplants and Cystic Fibrosis
The success rate of lung transplantation for CF patients is encouraging but like any other major surgery, transplants carry considerable risks and a transplant is appropriate only for a patient who is severely ill and has tried all other forms of conventional treatment. To these patients, lung transplantation offers a better quality of life.
There is a shortage of donor organs available for those awaiting transplants. If more people carry donor cards, then more lives can be saved in this way.
Transplantation doesn't remove all concern - the risk of rejection or infection still remains.
Anyone considering transplantation should consult doctors or counsellors at a local CF clinic. For more information about transplantation, you can download the CF Trust's factsheet from our publications library. You can read about a research project in transplantation and more about what we are doing to increase donations.
Give the gift of life. Join the NHS Organ Donor Register.
Organ Donor Line 0300 123 23 23
Right now more than 8,000 people in the UK need an organ transplant that could save or improve their life, but each year around 400 people die while waiting for a transplant. If you want to help someone live after your death, sign up to the register now.
Find out more from NHS Blood and Transplant, NHS Choices and Live Life Then Give Life.
A moving new book of letters written from transplant patients to their donors and donor relatives has been launched to show the positive side of organ donation and encourage more people to sign up to the organ register. Thank you for life is published by the Royal College of Physicians (RCP) for NHS Blood and Transplant (NHSBT) with support from the Department of Health and highlights the long-standing gratitude felt by those who receive donated organs.
http://www.cftrust.org.uk/
Sent with love from my iPad xxx
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