Separation Anxiety

How Separation Anxiety Develops

Babies adapt pretty well to other caregivers. Parents probably feel more anxiety about being separated than infants do! As long as their needs are being met, most babies younger than 6 months adjust easily to other people.

Sometime between 4-7 months, babies develop a sense of object permanence and begin to learn that things and people exist even when they're out of sight. This is when babies start playing the "dropsy" game — dropping things over the side of the high chair and expecting an adult to pick them up (which, once retrieved, get dropped again!).

The same thing occurs with a parent. Babies realize that there's only mum or dad, and when they can't see you, that means you've gone away. And most don't yet yet understand the concept of time so they do not know if or when you'll come back.

Whether you're in the kitchen, in the next bedroom, or at the office, it's all the same to your baby. You've disappeared, and your child will do whatever he or she can to prevent this from happening.

Stresses Can Trigger Anxiety

When they're between 8 months and 1 year old, kids grow into more independent toddlers, yet are even more uncertain about being separated from a parent. This is when separation anxiety develops, and children may become agitated and upset when a parent tries to leave.

Whether you need to go into the next room for just a few seconds, leave your child with a sitter for the evening, or drop off your child at daycare, your little might now react by crying, clinging to you, and resisting attention from others.

The timing of separation anxiety can vary widely from child to child. Some kids might go through it later, between 18 months and 2½ years of age. Some never experience it. And for others, certain life stresses can trigger feelings of anxiety about being separated from a parent: a new childcare situation or caregiver, a new sibling, moving to a new place, or tension at home.

How long does separation anxiety last? It varies, depending on the child and how a parent responds. In some cases, depending on a child's temperament, separation anxiety can last from infancy through the elementary school years. In cases where the separation anxiety interferes with an older child's normal activities, it can indicate a deeper anxiety disorder. If separation anxiety appears out of the blue in an older child, there might be another problem, like bullying or abuse.

Separation anxiety is different from the normal feelings older kids have when they don't want a parent to leave. In those cases, the distress can usually be overcome if a child is distracted enough and won't re-emerge until the parent returns and the child remembers that the parent left.

And kids do understand the effect this behavior has on parents. If you come running back into the room every time your child cries and then stay there longer or cancel your plans, your child will continue to use this tactic to avoid separation.

What You May Be Feeling

During this stage, you might experience different emotions. It can be gratifying to feel that your child is finally as attached to you as you are to him or her. But you're likely to feel guilty about taking time out for yourself, leaving your child with a caregiver, or going to work. And you may start to feel overwhelmed by the amount of attention your child seems to need from you.

Keep in mind that your little one's unwillingness to leave you is a good sign that healthy attachments have developed between the two of you. Eventually, your child will be able to remember that you always return after you leave, and that will be enough comfort while you're gone. This also gives kids a chance to develop coping skills and a little independence.

Making Goodbyes Easier

These strategies can help ease kids and parents through this difficult period:

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Timing is everything. Try not to start daycare or childcare with an unfamiliar person when your little one is between the ages of 8 months and 1 year, when separation anxiety is first likely to appear. Also, try not to leave when your child is likely to be tired, hungry, or restless. If at all possible, schedule your departures for after naps and mealtimes.

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Practice. Practice being apart from each other, and introduce new people and places gradually. If you're planning to leave your child with a relative or a new babysitter, invite that person over in advance so they can spend time together while you're in the room. If your child is starting at a new daycare center or preschool, make a few visits there together before a full-time schedule begins. Practice leaving your child with a caregiver for short periods of time so that he or she can get used to being away from you.

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Be calm and consistent. Create a exit ritual during which you say a pleasant, loving, and firm goodbye. Stay calm and show confidence in your child. Reassure him or her that you'll be back — and explain how long it will be until you return using concepts kids will understand (such as after lunch) because your child can't yet understand time. Give him orher your full attention when you say goodbye, and when you say you're leaving, mean it; coming back will only make things worse.

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Follow through on promises. It's important to make sure that you return when you have promised to. This is critical — this is how your child will develop the confidence that he or she can make it through the time apart.

As hard as it may be to leave a child who's screaming and crying for you, it's important to have confidence that the caregiver can handle it. It may help both of you to set up a time that you will call to check in, maybe 15 to 20 minutes after you leave. By that time, most kids have calmed down and are playing with other things. Don't let yourself give in early and call sooner! (as a nursery nurse I can totally confirm this, usually before the parent is at the car the crying has stopped) Most kids this age experience feelings of distress when a parent leaves them. These emotions usually stem from worries that a parent who leaves may never come back.As difficult as it might be, resist the urge to run back at the sight of tears or to have a long, drawn-out goodbye. Instead, establish a goodbye ritual that is pleasant and consistent, yet firm. Stay calm and reassure your daughter that you will be back. Tell her when you will return in terms she can understand, such as after her afternoon naptime.

Most kids calm down quickly and begin to go about their daily routines after parents leave. Sometimes it helps to leave a cherished object (like a favorite blanket or doll) your child can use for comfort while you're away.

If you're caring for another person's child who's experiencing separation anxiety, try to distract the child with an activity or toy, or with songs, games, or anything else that's fun. You may have to keep trying until something just clicks with the child.

Also, try not to mention the child's mother or father, but do answer the child's questions about his or her parents in a simple and straightforward way. You might say: "Mommy and Daddy are going to be back as soon as they are done dinner. Let's play with some toys!"

It's Only Temporary

Remember that this phase will pass. If your child has never been cared for by anyone but you, is naturally shy, or has other stresses, it may be worse than it is for other kids.

Trust your instincts. If your child refuses to go to a certain babysitter or daycare center or shows other signs of tensions, such as trouble sleeping or loss of appetite, then there could be a problem with the childcare situation.

If intense separation anxiety lasts into preschool, elementary school, or beyond and interferes with your daily activities, discuss it with your doctor. It could be a sign of a rare but more serious condition known as separation anxiety disorder.

Kids with separation anxiety disorder fear being lost from their family members and are often convinced that something bad will happen. Talk with your doctor if your child has signs of this, including:

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panic symptoms (such as nausea, vomiting, or shortness of breath) or panic attacks before a parent leaves

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nightmares about separation

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fear of sleeping alone (although this is also common in kids who don't have separation anxiety)

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excessive worry about being lost or kidnapped or going places without a parent

For most kids, the anxiety of being separated from a parent passes without any need for medical attention. But if you have concerns, talk to your doctor.

Babies

The first time you leave your baby with a babysitter is likely to be harder on you than it is on your child. As long as their needs are being met, most babies younger than 6 months adapt pretty well to other caregivers.

Most babies start to experience separation anxiety somewhere between 8 months and a year, with it peaking between 1 and 2 years of age. Separation anxiety typically occurs once your child grasps the concept of object permanence — that there's only one of you and when she can't see you, you've gone away. What causes the anxiety is that she doesn't understand when and if you'll come back. Playing games like peek-a-boo can help her learn that you will return after you go away. If you go into the next room, talk to baby so they still know you are there, or sing so they can hear you.

Separation anxiety is a common developmental stage, and your baby will probably go through it sooner or later. Until then, be glad that her first time away from you was safe and enjoyable.

http://kidshealth.org/parent/question/emotions/separation_anxiety_toddlers.html?tracking=P_RelatedArticle

*mums world* sleep topic 19/09/2013

Lots of young children find it difficult to settle down to sleep, and they wake up during the night. For some people, this might not be a problem.

If you're happy for your child to go to bed at the same time as you, that's fine.

But if you or your child are suffering from lack of sleep, you may like to try some of these suggestions. Every child is different, so do only what you feel comfortable with and what you think suits your child.

If your child won’t go to bed

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Decide what time you want your child to go to bed.

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Close to the time that your child normally falls asleep, start a 20-minute ‘winding down’ bedtime routine. Bring this forward by 5-10 minutes a week (or 15 minutes, if your child is in the habit of going to bed very late) until you get to the bedtime you want.

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Set a limit on how much time you spend with your child when you put them to bed. For example, read only one story, then tuck your child in and say goodnight.

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Give your child their favourite toy, dummy (if they use one) or comforter before settling into bed.

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If your child cries, leave them for 1 minute before going back in and settling them down again. Increase the time by one minute more each time.

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Don’t pick them up or take them downstairs. If your child gets up, put them back to bed again.

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Leave a drink of water within reach and a dim light on if necessary. Don’t turn on any extra lights when u enter the room.

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If you keep checking to see if your child is asleep, you might wake them up, so leave it until you're certain that they're asleep.

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You might have to repeat this routine for several nights.

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If you try this, you will need to try to be firm and not give in.

If you child keeps waking during the night

By the time your child is six months old, it’s reasonable to expect them to sleep through most nights. However, up to half of all children under five go through periods of night waking. Some will just go back to sleep on their own; others will cry or want company. If this happens, try to work out why your child is waking up.

For example:

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Is it hunger? If your child is a year or older, some cereal and milk last thing at night might help them to sleep through the night.

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Are they afraid of the dark? You could use a nightlight or leave a landing light on.

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Is your child waking up because of night fears or bad dreams? If so, try to find out if something is bothering them.

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Is your child too hot or too cold? Adjust their bedclothes or the heating in the room and see if that helps.

If there’s no obvious cause, and your child continues to wake up, cry or demand company, you could try some of the following suggestions:

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Scheduled waking. If your child wakes up at the same time every night, try waking them 15-60 minutes before this time, then settling them back to sleep.

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Let your child sleep in the same room as a brother or sister. If you think your child may be lonely, and their brother or sister doesn’t object, put them in the same room. This can help them both sleep through the night.

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Teach your child to get back to sleep by themselves. First check that everything is alright. If it is, settle your child down without talking to them too much. If they want a drink, give them water but don’t give them anything to eat. For this approach to work, you need to leave them in their cot or bed. Don't take them downstairs or into your bed. Let them cry for around 1 minute before you return, increase a minute each time. On the third night or when it takes less time for them to settle wait 5-10 minutes before you check on them. Over the next few nights, gradually increase the amount of time you leave them before checking. It might take a week or two but if you keep the routine going, your child should start falling asleep on their own.

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Tackle it together. If you have a partner, agree between you how to tackle your child’s sleeping problems. You don’t want to try to decide what to do in the middle of the night. If you've both agreed what's best for your child, it’ll be easier to stick to your plan.

Extra help with sleeping problems

It can take patience, consistency and commitment, but most sleep problems can be solved. If you’ve tried the suggestions on these pages and your child’s sleeping is still a problem, talk to your GP or health visitor.

They may have other ideas or may suggest you make an appointment at a sleep clinic, if there is one in your area. Sleep clinics are usually run by health visitors or clinical psychologists who are trained in managing sleep problems. They can give you the help and support you need.

In the meantime, if you’re desperate, try to find someone else to take over for an occasional night, or someone whom your child could stay with. You’ll cope better if you can catch up on some sleep yourself.

Baby sleep advice

Some babies sleep much more than others. Some sleep for long periods, others in short bursts. Some soon sleep through the night and some don’t for a long time. 

Your baby will have their own pattern of waking and sleeping, and it’s unlikely to be thesame as other babies you know.

It’s also unlikely to fit in with your need for sleep. Try to sleep when your baby sleeps. If you’re breastfeeding, in the early weeks your baby is likely to doze off for short periods during a feed. 

Carry on feeding until you think your baby has finished or until they’re fully asleep. This is a good opportunity to try to get a bit of rest yourself. 

If you’re not sleeping at the same time as your baby, don’t worry about keeping the house silent while they sleep. It’s good to get your baby used to sleeping through a certain amount of noise.

How can I get my baby used to night and day being different?

It’s a good idea to teach your baby that night time is different to daytime from the start.

During the day, open curtains, play games and don't worry too much about everyday noises when they sleep.

At night, you might find it helpful to:

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keep the lights down low

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not talk much and keep your voice quiet

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put your baby down as soon as they’ve been fed and changed

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not change your baby unless they need it

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not play with your baby

Soon, your baby will learn that night time is for sleeping.

Where should my baby sleep?

For the first six months your baby should be in the same room as you when they're asleep, both day and night. Particularly in the early weeks, you may find that your baby only falls asleep in your or your partner's arms, or when you're standing by the cot. 

You can start getting your baby used to going to sleep without you comforting them by putting them down before they fall asleep or when they’ve just finished a feed. 

It may be easier to do this once your baby starts to stay alert more frequently or for longer.

Is it important to have a routine from the beginning?

Newborn babies will sleep on and off throughout the day and night. It can be helpful to have a pattern, but you can always change the routine to suit your needs. For example, you could try waking your baby for a feed just before you go to bed in the hope that you’ll get a long sleep before they wake up again.

Establishing a bedtime routine

You may feel ready to introduce a bedtime routine when your baby is around three months old. Getting them into a simple, soothing bedtime routine can be helpful for everyone and can help prevent sleeping problems later on. It's also great one-to-one with your baby. The routine could consist of:

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having a bath

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changing into night clothes and a fresh nappy

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brushing their teeth (if they have any!)

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putting to bed

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reading a bedtime story

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dimming the lights in the room to create a calm atmosphere

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giving a goodnight kiss and cuddle

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singing a lullaby or having a wind-up musical mobile that you can turn on when you've put your baby to bed

Leave the room while your baby is still awake, happy and relaxed and they will learn how to fall asleep on their own in their cot. Try to avoid getting them to sleep by rocking or cuddling them in your arms. If they get used to falling asleep in your arms, they may need nursing back to sleep if they wake up again.

As your child gets older, it can be helpful to keep to a similar bedtime routine. Too much excitement and stimulation just before bedtime can wake your child up again. Spend some time winding down and doing some calmer activities, like reading. 

Avoid bedtime feasts

Leave a little time between your baby's feed and bedtime. If you feed your baby to sleep, feeding and going to sleep will become linked in your baby's mind. When they wake in the night, they'll want a feed to help them go back to sleep.
 

How much sleep is enough?

Just as with adults, babies’ and children’s sleep patterns vary. From birth, some babies need more sleep or less sleep than others. This list shows the average amount of sleep that babies and children need during a 24-hour period, including daytime naps.

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Birth to three months: most newborn babies are asleep more than they are awake. Their total daily sleep varies, but can be from eight hours, up to 16-18 hours. Babies will wake during the night because they need to be fed. Being too hot or too cold can also disturb their sleep.

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Three to six months: as your baby grows, they’ll need fewer night feeds and be able to sleep for longer. Some babies will sleep for eight hours or longer at night. By four months, they could be spending around twice as long sleeping at night as they do during the day.

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Six to 12 months: at this age, night feeds should no longer be necessary, and some babies will sleep for up to 12 hours at night. Teething discomfort or hunger may wake some babies during the night.

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12 months: babies will sleep for around 12-15 hours in total.

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Two years: most two-year-olds will sleep for 11-12 hours at night, with one or two naps in the daytime.

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Three to four years: most will need about 12 hours sleep, but this can range from 8 hours up to 14. Some young children will still need a nap during the day.

Coping with disturbed nights

Resist the urge to rush in if your baby murmurs in the night. Leave them for a few minutes and see if they settle on their own.

Having said that, newborn babies invariably wake up repeatedly in the night for the first few months and disturbed nights can be very hard to cope with.

If you have a partner, ask them to help. If you’re formula feeding, encourage your partner to share the feeds. If you’re breastfeeding, ask your partner to take over the early morning changing and dressing so that you can go back to sleep. 

Once you’re into a good breastfeeding routine, your partner could occasionally give a bottle of expressed breast milk during the night. If you’re on your own, you could ask a friend or relative to stay for a few days so that you can sleep.

Sleep problems

All new babies change their patterns. Just when you think you have it sorted and you've all had a good night's sleep, the next night you might be up every two hours.

Be prepared to change routines as your baby growns and enters different stages. And remember, growth spurts, teething and illnesses can all affect how your baby sleeps.

If your baby is having problems sleeping or you need more advice about getting into a routine, speak to your GP, midwife or health visitor.

Many children experience nightmares and night terrors, but most grow out of them. They don't cause any long-term harm to your child.

Night terrors are very different from nightmares.

A child having night terrors may scream and thrash around, and may not recognise you if you try to comfort them. This behaviour occurs just as they come out of a cycle of deep sleep. Your child will not be fully awake during these episodes and will have no memory of theirbehaviour the next morning.

Nightmares, on the other hand, occur during the lighter stage of sleep, when the child is dreaming. They may wake up from the nightmare and, depending on their age, may be able to remember and describe the bad dream to you.

Both night terrors and nightmares in children are described in more detail below, with advice on what you should do.

Night terrors

Night terrors are common in children aged three to eight years old. A child who experiences night terrors may scream, shout and thrash around in extreme panic, and may even jump out of bed. Their eyes are open, but they are not fully awake.

The episodes usually occur in the early part of the night and can continue for several minutes, for up to 15 minutes.

Why they happen

Night terrors are more common in children with a family history of night terrors or sleepwalking behaviour.

A night terror attack may be triggered by:

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anything that increases your child's amount of deep sleep, such as tiredness, fever or certain drugs

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anything that makes your child more likely to wake from deep sleep, such as excitement, anxiety or sudden noise

What you should do

The best thing you can do if your child is having an episode of night terrors is to stay calm and wait until the episode passes, making sure your child is safe.

Night terrors can be frightening to witness, but they don't cause any harm to your child. You shouldn't attempt to wake them when they are having the episode.

Your child may not recognise you and may become more agitated if you try to comfort them.

Once your child has come out of the attack, it is safe to wake them and, if necessary, encourage them to use the toilet before settling them back to sleep.

If your child returns very quickly into deep sleep, they may have another episode. Making sure they are fully awake before they go back to sleep can break this cycle.

Your child will not remember the episode the next morning, but it may still help to have a general chat to find out if anything is worrying them and triggering their attacks. It also helps if they have a relaxing bedtime routine.

If the night terror attacks are frequent and occur at a specific time every night, you may find that waking your child breaks the cycle. Wake your child 15 minutes before the anticipatedtime of the attack every night for seven days. This can disrupt their sleep pattern enough to stop the attacks without affecting sleep quality.

When you should seek help

Most children grow out of night terrors. However, you should talk to your doctor if they are occurring several times a night or are very frequent (occurring most nights). Your GP will be able to check whether something is causing them that could be easily treated. For example, large tonsils could be causing breathing problems at night and waking your child.

Cot to bed

Ready for a bed?

Ideally you should aim to keep your toddler in a cot for as long as possible but generally by the age of 3 years, most children have moved to a bed. A sure sign that a child needs to be transferred to a bed is when they persist in attempting to climb out of the cot or are successful in escaping!

Your daughter is on the young side for such a move so to keep her in it you’ll have to give her the incentive to want to stay there. If you give in and take her into your bed, the waking is likely to continue – after all, snuggling up with mum and dad is the ultimate reward for her night time waking. At the same time, she may develop inappropriate sleep associations and lose the ability to self-settle alone during the night.

Make it gradual

A gradual retreat program will help teach your daughter to settle alone at bedtime and go back to sleep by herself during the night. This technique will minimise crying and is less likely to disturb her baby brother and the lucky parent whose turn it is to stay in bed! 

Gradual retreat is a method of gradually distancing yourself from your daughter little by little until she no longer needs your presence to fall asleep at bedtime. It should teach her how to return to sleep independently during the night.

STEP 1

After her usual bath and bedtime story routine, get her into bed with whatever cuddlies she sleeps with, and stroke her arm or shoulder as she settles.

STEP 2

Stop stroking and gently pat her to sleep. After a couple of minutes of steady patting start to pat intermittently, with gradually increasing intervals between contact.

STEP 3

Place a hand very lightly on her and rest it there for a couple of minutes. Then remove your hand and quietly “shhhhhhh” her as she drifts off.

STEP 4

This is where you start to quietly move your chair further away from her bed – quietly move it two feet away and sit for a couple of minutes; then move it to the middle of the room for a couple of minutes; and then move to beside the door. Once you’re in this spot, sit for 10 minutes to make sure she's sleeping deeply. If you think she is, move your chair outside the door and give it another couple of minutes if you feel it’s necessary.

Keep up the good work

You’ll need to sit with your daughter and repeat this procedure every time she wakes in the night until she has gone back to sleep again. You can customise this technique to suit you better – for example, you might want to sit by the bed on your chair, or lean against the wall until you’re sure she is asleep. Depending on how well she’s coping, repeat each single step for three nights only and keep any interaction with her to a minimum.

This sleep method normally takes around three or four weeks to complete. It’s likely to be challenging and frustrating for the first few nights, but eventually your daughter will learn to settle herself and you shouldn’t be hearing the pitter patter of tiny feet late at night!  

Nightmares

Nightmares are quite common. They often begin between the ages of 18 months and three years. Nightmares aren’t usually a sign of emotional disturbance. They may happen if your child is anxious about something or has been frightened by a TV programme or story. Be sure they have a relaxing hour or so before bed so they can wind down. After a nightmare, your child will need comfort and reassurance. If your child has a lot of nightmares and you don’t know why, talk to your GP or health visitor. You may want to talk to your child to see if anything is worrying them and triggering their nightmares. It also helps to ensure they have a relaxing bedtime routine.

If your child is older and having frequent nightmares, you may need advice from a psychologist (see your GP for a referral).

Personal experience on MISCARRIAGE

Well i found out i was pregnant on Valentines Day 14th Feb 2011. We were so happy and excited to know that my partner was going to have his first baby (my second baby, my first is not his). He had been through a lot in his life and this really meant a lot to him. By my dates i should of been around 8 weeks pregnant. We went to the doctors to confirm it a few days after finding out,and then it all felt so real. We started telling close family and friends on each day that passed. On the 27th Feb our world started to fall apart but we didn't know that at that point. On 27th Feb i went to the toilet and when i wiped there was a bit of bright red blood there, didn't really think anything of it because it was only a little bit so i assumed it was just a bit of spotting. Later on that night i started to get a really bad back and belly ache, so then i started to think something was up. My partner phoned NHS and they said to keep an eye over night if the bleeding gets heavier then go straight to hospital but then advised if it was a miscarriage then there is nothing much they can do. Went to the toilet again and it was a bit more blood but still only light still thinking everything would be ok we went to bed. Next morning 28th Feb my bleeding got a little bit more so my partner insisted that we just went to the hospital. In A+E they put us in a little room told me to go wee in a pot, did test which indicated i was pregnant, told me again they are going to try book me in for a scan. We waited for about half an hour for them to come back to us to say whether we could have a scan or not. They came back eventually and said that i can have a scan to rule out ectopic, my mind started to panic at that point i did not know what was going on had never experienced anything like this before. Before going for a scan they took us up to a ward and a doctor told me to undress and lie on bed, at this point i could not stop crying the doctor was checking me inside it was awful. He said that he can see blood but my cervix was still closed which was a good sign. At this point i really started to feel better again because of what he said. We went and sat in the waiting room for the scan and it was not nice to be sat there with people pregnant with their bumps and stuff when i was going through this tough day, Went in for a scan the lady couldn't see nothing so had to do an internal one, again i had to take my trousers off. She did the internal and all that was on the screen was a sac with something so tiny in there. She said i was either 5 weeks pregnant or everything stopped growing at that point. I started to think that maybe i was only 5 weeks pregnant, by the time we got home the bleeding got a bit heavier but still i thought everything would be OK. Over the next week my bleeding got a lot heavier and i started losing clots, but was still being in denial. I lost quite a big clot which my mum said that would of been the sac. A few days before i went for another scan my bleeding had stopped, so i decided to do a pregnancy test. NEGATIVE. All day i just felt numb then at night i just broke down which resulted in my partner breaking down as well. I felt so torn up inside and i felt like i had let him down. The next few days are a blur but we went for other scan that confirmed that everything had gone. I felt worse that i was at home thinking that everything would be OK. Everyone was telling me i was miscarrying but i just would not believe them :-(. For weeks it was so hard to deal with, but in time it does get easier. I will never stop thinking about what could of been but i have to stay strong for my own sake.

Kendal - Neuroblastoma Story

Kendal was born in March 2010, our first girl made our family complete. Her big brothers Mason, Lewis andKarson adored Kendal instantly and showed her off eagerly to every visitor that came. Kendal grew so fast, just as her brothers had, and soon we were watching her smile and crawl and we came to know and love her sun shine little personality and her beaming smile. By the time Kendal was two she could talk very well and would tell us all about Hello Kitty even sing along to Peppa Pig.

Then one day Kendal told us her tummy hurt and she cried when she needed to poo. Days went by and our bright little girl seemed so quiet and withdrawn but our GP reassured us it was nothing to worry about and constipation can do this. Days turned into weeks but even our local hospital looked at Kendal and sent us home again. For too long now I had watched Kendal withdraw and I was sure there was something seriously wrong. I didn't want to waste the GP's time but I didn't know what else to do so I took her back and cried with her in the waiting room. This time our GP was worried and he sent us straight to A&E, although I was scared and shaking I was just relieved that we could finally get Kendal well again.

At the hospital tests were done, Kendal even had an ultrasound but before we knew it we were sent home again to wait for an appointment for a CT scan. That night I curled up with Kendal and tried not to let my tears splash her skin. The day of the scan arrived and we nervously waited to hear the results, a million things had gone through my mind, but not what we then heard, nothing had prepared me for the words that fell from his mouth that day... "We have found a tumour... your daughter has Cancer".

As the walls crushed in on me time seemed to not make any sense, everything moved so fast, an ambulance was called and my mind raced with questions but sheer terror prevented me from speaking. There seemed to be a hundred people telling me things all at once but with moments in between that were the loneliest in my life, I clutched Kendal tight and tried to make sense of it all, but all I could think was they must have made a mistake. This thought gave me some comfort and by the time we arrived at Leeds General I had convinced myself that the tests would show everything was OK, but as the consultant approached us with Kendal's new test results my heart sank and he confirmed the worst, Kendal did have Cancer, and worse than that, it was a terrible type of aggressive Cancer called Neuroblastoma, and it had spread to every bone in her body, Kendal was fighting for her life.

Chemotherapy began straight away, I can’t explain how it feels to watch chemo drip into your baby and how frightened yet grateful you are for the help everyone is giving you and the chance you are getting to save your child. The days are long though and the nights are even longer and I longed for someone to tell me what was going to happen and that everything would be OK. We researched online but the more we learned about Neuroblastoma the more helpless I felt, to learn that even if Kendal got through her treatment this time she would have an 80% chance of it coming back made me sick to my stomach but when I realised that there is no protocol here for relapsed Neuroblastoma I knew I had to learn more.

Then I met another mum who told me about a charity called Families Against Neuroblastoma and how they could help. Through their support group we learned about other children and what their parents were doing to help their child. We learned about other treatments that were not currently available on the NHS and we wanted that chance for Kendal too. Although there was no way in the world we could afford them, with some treatments costing more than £500,000.00 we felt positive that there was something we could do to help give Kendal a better chance.

 

Kendal has shown us just how strong she is and just how much life she has bursting inside her, she still adores Hello Kitty and sings along to Peppa Pig once more, all she wants is to jump in muddy puddles again and play with her big brothers, all we want is for her to have the chance.Laine and Stuart, Kendal's Mummy and Daddy.

 

Millie Rose - Neuroblastoma Story

Millie - Rose came into our lives on 14th June 2011, a much loved and wanted sister to Michael and Lexie and daughter to ourselves, Lyndsay and Michael.
Summer 2012 not long before Millie’s first birthday we noticed Millie was not quite herself, struggling to dirty her nappy, screaming in pain each time she needed to go and she seemed to catch every bug virus going. Drs gave her various antibiotics, calpol and lactulose. Nothing ever seemed to work though, despite all this she was still a happy friendly loveable little girl.

Christmas 2012 is when we noticed Millie was losing a bit of weight and again seemed to be catching every bug going, me and Millie's dad took her to the hospital, walk in centre and local GPs at least once a week, they put it down to ear infections again giving her lots of antibiotics etc.

February came and our beautiful girl wasn't getting any better, she was in fact worse even after the hospital put her on iron as she was very anaemic. Millie’s eyes became black and swollen and a lump appeared on her head even though she had no energy to move so couldn’t have banged it. We made the decision to take Millie to Alder Hey, a children’s hospital as we weren’t getting real answers from any medical people close by.

When we arrived at the hospital Millie was seen straight away even though there was a 3hour waiting time, she had lots of tests. The next day we were met by lots of doctor and one had a very serious look on his face, we knew it was going to be bad news but neither of us were prepared for what he said... "Your daughter has Cancer".

Further tests were carried out; we were in so much shock I don’t think I knew what the tests were for. Time seemed to stop, I wondered if they were testing her again to see if they had made a mistake but when we were met once again by another serious faced doctor my heart sank. He told us Millie had Neuroblastoma, a very aggressive and hard to treat Cancer, and she was in the final stages, Millie was in serious trouble, we were numb.

Chemotherapy started straight away, we focussed on Millie and tried to stay positive. Inside we were going through every emotion possible, devastation, heartbreak, despair, denial, blind panic, anger and then came the harsh realisation of what this cancer could do to our beautiful Millie Rose. This was when we started to research the disease and we began to learn about what that really meant for us as a family. We realised even if Millie could beat this monster there was an 80% chance it could come back, and if it did there is no relapse protocol in the UK.

Millie has finished her 80 days of chemotherapy and started TVD on 20/5/2013 as her bone marrow still has disease in it.

Millie loves peppa pig, mickey and minnie mouse and playing with her big brother and sister at home. She is the baby of our family and our whole world, all we want is for our baby to be able to grow up into a healthy young woman we can’t let this disease take her away from our family

 

Neuroblastoma

Neuroblastoma

Signs and symptoms of Neuroblastoma

The symptoms vary depending on where your child’s tumor is.  The first symptoms are vague, such as tiredness, loss of appetite and pain in the bones. More specific symptoms will depend on where the Neuroblastoma starts:

 

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If the tumor is in the abdomen, your child’s tummy may be swollen and they may complain of constipation or have difficulty passing urine.

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If the tumor affects the chest area, your child may be breathless and have difficulty swallowing.

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If the tumor occurs in the neck, it's often visible as a lump and occasionally affects breathing and swallowing.

 

 

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Occasionally, there are deposits of Neuroblastoma in the skin that appear as small, blue-coloured lumps.

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If the tumour is pressing on the spinal cord, children may have weakness in the legs and walk unsteadily. If your child is not yet walking, you may notice reduced leg movements. They may also have constipation or difficulty passing urine.

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Very rarely, children may have jerky eye and muscle movements, and general unsteadiness associated with the Neuroblastoma.

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Your child may also have high blood pressure.

How Neuroblastoma is diagnosed

A variety of tests and investigations may be needed to diagnose Neuroblastoma. These include a biopsy, blood and bone marrow tests, x-rays, CT or MRI scans, and special nuclear medicine scans called MIBG. The tests are done to find out if your child definitely has Neuroblastoma and what the exact position of the original tumor site is within the body. The tests will also find out whether the Neuroblastoma has spread.

The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. Knowing the particular type and stage of the cancer helps the doctors to decide on the best treatment for your child. 

A commonly used staging system for Neuroblastoma is described below.

Stage 1

The cancer is contained within one area of the body (localised) and there's no evidence of it having spread. It can be completely removed by surgery, or there may be very small (microscopic) amounts of tumour left after surgery.

 

Stage 2A

The cancer is localised and has not begun to spread, but it cannot be completely removed by surgery.

Stage 2B

The cancer is localised and has begun to spread into nearby lymph nodes.

 

Stage 3

The cancer has spread into surrounding organs and structures, but has not spread to distant areas of the body.

 

Stage 4

The cancer has spread to distant lymph nodes, bone, bone marrow, the liver, the skin or other organs.

Stage 4S (also called special Neuroblastoma)

This is found in children under one year old. The cancer is localised (as in stage 1, 2A or 2B) but has begun to spread to the liver, skin or bone marrow.

 

Stage L1

The tumour is localised and has not spread into important areas (vital structures) nearby. It can be removed by surgery.

Stage L2

The tumour is localised but has 'image-defined risk factors' and can't be safely removed by surgery.

 

 

 

 Stage M

The tumour has spread to other parts of the body.

Stage MS

The tumour has spread to the skin, liver and/or the bone marrow in children younger than 18 months old.

If the cancer has spread to distant parts of the body, this is known as secondary or metastatic cancer.

If the cancer comes back after initial treatment, this is known as recurrent or relapsed cancer.

 

Treatment for Neuroblastoma

The treatment of Neuroblastoma depends on the age of the child, the size and position of the tumor, the tumor biology (including the MYCN status) and whether the Neuroblastoma has spread. 

 

Surgery

For tumours that have not spread (localised tumours), the treatment is usually surgery. If the tumor is at an early stage and there's no evidence that it has spread to the lymph nodes or any other parts of the body, an operation to remove the tumor, or as much of it as possible, will be done.

A cure is usually possible for children with localized tumors. However, if the tumor is classed as high-risk due to the tumor biology results, further treatment with chemotherapy and possibly radiotherapy will be needed. If the tumor is, at first, too large or in too difficult a position to remove safely, chemotherapy will be given to shrink it before surgery.

Chemotherapy

If the tumor has already spread by the time of diagnosis, or is indicated as being high-risk by the tumor biology result, intensive chemotherapy is needed. Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It's usually given as a drip or injection into a vein. Your child's specialist will discuss with you the type and amount of chemotherapy needed.

 

High-dose chemotherapy with stem cell support

If the Neuroblastoma has spread to several parts of the body, or is high-risk with MYCN amplification, high-dose chemotherapy with stem cell support is used after the initial courses of chemotherapy.

 

 

 

High doses of chemotherapy wipe out any remaining Neuroblastoma cells, but they also wipe out the body's bone marrow, where blood cells are made. To prevent the problems this causes, stem cells (blood cells at their earliest stages of development) are collected from your child through a drip before the chemotherapy is given. These stem cells are then frozen and stored.

After the chemotherapy, the stem cells are given back to your child through a drip. They make their way into the bone marrow, where they grow and develop into mature blood cells over a period of 14-21 days.

 

Monoclonal antibody treatment

Monocolonal antibodies can destroy some types of cancer cells while causing little harm to normal cells. A new monoclonal antibody treatment called anti-GD2 is currently being tested in people with high-risk Neuroblastoma. Children in the UK with high-risk Neuroblastoma are being given anti-GD2 as part of a clinical trial. There is good evidence from a clinical trial carried out in America in 2009 that this may be a promising therapy when given alongside other standard treatment for Neuroblastoma.

Radiotherapy

External radiotherapy may be given if the Neuroblastoma is high-risk, or has spread to several parts of the body. This uses high-energy rays to destroy the cancer cells, while doing as little harm as possible to normal cells. External radiotherapy is given from a machine outside the body.

Internal radiotherapy may sometimes be given using radioactive MIBG. Radioactive MIBG is similar to the MIBG used in an investigation to diagnose a Neuroblastoma (see above), but uses higher doses of radioactivity to kill the cancer cells.

Follow-up

Follow-up after treatment usually involves regular visits to the hospital outpatients department, with scans and urine tests as necessary. For children who have had chemotherapy and/or radiotherapy, more specialised tests may be carried out. For example, hearing tests, kidney and heart function tests, and checking hormone levels. These will be repeated until your child has grown up.

If you have specific concerns about your child’s condition and treatment, it's best to discuss them with your child’s doctor, who knows their situation in detail