Post transplant sleep problems

My daughter is 2.5 years old, 2 years post transplant. She has never been a great sleeper, I think she spent too much time in hospitals from 5 weeks of age to 2 years old to develop any kind of good sleep pattern.

We thought this might improve with time, finally getting all her teeth in and fewer hospital stays........but it hasn't and we are all fairly exhausted.

She has no problems getting to sleep, has a good bedtime routine (reads books, has a story, a lullaby and drops off) but she just can't stay asleep. She wakes every 1-3 hours crying and very upset, now that she is older she says 'I've had not a very nice dream'. About once a week she will wake with night terrors too.

There seems to be a link with her Tac level, her sleeping is notably worse when her levels are even slightly higher than normal. They are currently at 6ish but when the Tac level was at 3 she was sleeping much better.

She does have a crazily vivid imagination, could this just be 'normal' sleep issues?? She does seem very sensitive to Tac, she also suffers a long list of food allergies thought to be caused by it.

I'm convinced the Tac is playing a big part. We've spoken to Leeds but their first option would be to lower Tac and introduce MMF but she can't have MMF due to it giving her neutropenia previously. So I thought I'd ask if anyone found similar problems?

from a very tired mummy zzzzzzzzzzz

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  • Hi we went through this and always thought it was a liver thing.. We took our son to an osteopath and after one session he slept through the night! We used to take him once a week for 2 months.

    Even now 7 years later if there is any issues the osteopath sorts it out!

  • Hi lovely, if you are who I'm thinking you are, I remember many threads on this in the Facebook LiveR page and I think someone put a note in about sleep studies.

    We have similar issues with young padawan but are finally making real progress, though he is a bit older 3 and three months now. We had a good look at the "no cry sleep solution for toddlers and pre-schoolers" when he was just two as things really came to head then and we were starting to fall apart due to lack of sleep and never seeing each other in an evening. It took six months for a major impact ( sorry) but we were seeing changes in behaviour and an easier transition into sleep within a few weeks. Does your princess nap in the day at all? young padawan never had and after a few weeks was having regular daytime one hour naps and that got the sleep ball rolling. He is now sleeping in his own room and has a record of four solid nights in a row of sleeping through. But on average is asleep before half eight every night and sleeps through once or twice a week generally waking one to three times a night the rest of the week and going back to sleep quicker than in the past. ( he does still need to feed to go back to sleep, which I don't think is the case with your princess), but with my non-liver daughter we used to re-set and do a shortened bedtime cup of milk gentle song to help ease her back to sleep if she woke at night with bad dreams .

    We have also upped young padawan's physical activity during the day and as he has dropped naps this has made a real impact. Gym club, swimming when well, pre-school and lots of play dates and park sessions. We are (I am in particular) incredibly protective of my weekend morning lie-in that no-one is allowed to interrupt. Our health visitor was also very supportive and had some ideas too. You are amazing and wonderful beautiful massive hugs xxx

  • My daughter turned 13 last week but I can vividly remember how she didn't really get the sleep thing! My daughter always had a set bedtime routine which she was fine with but really didn't want to go to sleep. If she did nod off, which could be 2 or 3 hours after going to bed and after an active day with no daytime nap, she could be wide awake again 2 hours later! She hasn't been transplanted and does not take any medication so I am unable to relate to this however I think like you say the real problem is that we miss the opportunity to get them into any routine from an early age due to their illness. By the time they are well we have to try and instill sleep patterns that we would normally be doing from birth. Also from having a very unsettled unwell baby we were now blessed with a very active 9 month old who seemed to want to make up for any lost time! Thinking of this is what got me through those times. I remember a Health visitor saying that I should treasure those special moments together in the middle of the night! At the time I really didn't buy that. We really didn't crack the sleep thing so I have no magic answers but we did survive. Take all the help you can from friends and families. Rest yourself at every opportunity, even if it means that the housework doesn't get done! I spent most nights sleeping alongside my daughter and my husband sleeping alongside our older daughter who would get disturbed just so we could all get some rest. It is OK, do what you need to do so you can all get some rest.The one thing that did work as she got a little older was putting some "barbie" type dolls beside her bed and often I would wake early morning to find her just sitting in bed dressing them or combing their hair waiting for the house to wake. At 13 she still needs very little sleep but goes to bed at a set time, goes to sleep eventually and is usually first awake each morning but she has learned to read a book or listen to music to rest even if she isn't sleepy. x

  • Thank you for all the replies!

    Hi nish123 , I am desperate enough to try anything so will give the osteopath a go, thanks I really hope a simple fix like that will help.

    Hi FleurT, yes it is me :) My princess had always napped after lunch but would even wake from a nap once or twice with bad dreams. She's recently stopped napping most days unless she is in the car but it hasn't had any effect really. I'm reluctant to leave her to cry (some 'advice' I've been given) when she wakes so upset as I'm sure she is having nightmares but I'm not sure if this is making it all worse! She just wants a cuddle and a kiss or her Daddy........ She has never drank milk, bottle or cup, during the night since she was 1 (never really got the whole bottle feeding thing going again after transplant) and will drop off fairly quickly after each waking episode but the problem is she wakes up again 1 hour later.......She is fairly active most days but gets very tired due to all the waking up so she can do lots of activity in the morning but is then exhausted all afternoon. Remarkably she is a happy cheerful little person 90% of the time and has no other behaviour issues other than being bossy little girl haha! I'll have a look at the no cry sleep thingy, I'm glad you are seeing results with your mischief.

    The Health visitor is a joke, I'm currently on my 16th one due to staff changes so I don't even know their names anymore....My hubby is great and we try and take it in turns, my problem is once I'm awake I can't get back to sleep so she'll be snoring away and I'll be looking at the ceiling lol. I'm not really a long lie person but would just love 4 hours in a row a night. It wasn't so bad before I went back to work but it's killing me now.

    Hi skina, I treasure the 11pm wake ups, the snuggles are great but the 12.30am, 2am, 3.30am, 4.30am and 6am not so much lol. I know what they mean though and she is very treasuered at all other times ;) when she woke up at 2am this morning she told her daddy she loved him then went back to sleep. She has really only been 'well' since last June, I don't blame her being a light sleeper when I think how often she was woken for bloods, iv's, ob checks through the night in hospital so I'm sure the routine of waking up is what she's learnt. I'm glad you survived, it gives me hope. I can't wait until she is old enough to read a book on her own in her bed! We are very blessed to have a great supportive family who have her overnight once or twice a month, I used to feel guilty knowing they wouldn't get any sleep but now I just think at least its just one night for them! I work 3 long days a week so I try and cram in lots with my her on the other days so I'm probably my own worst enemy.

    I suppose I'm also worried about how lack of sleep will affect her as she gets older, how will she cope at school on 5 hours of broken sleep? How did your daughter cope with that?

    I keep saying sleep is for the weak but I'm starting to feel the effects of 2.5 years of little sleep and it's making me weak lol.

    When she is a teenager she is never going to be allowed to lie in her bed all day! That will be my revenge :D

  • Hi all

    My son is 15 months and was transplanted at 7 months. He is exactly the same as he goes to sleep no problem, sleeps for maybe 2-3 hours then wakes up every 2ish hours until he gets up. I thought it was because I used to feed him every time he moved to keep his weight up before his transplant. I keep thinking he will sleep better ( or for longer!) if he eats a bit more. Still having food issues but its getting better! It's actually reassuring to hear other people in the same boat. I have friends with very young babies who sleep through the night and it makes me think its more down to me than him! My eldest son who is now 5 went to a cranial osteopath when he was little and I remember him falling asleep in her hands as she worked her magic! Can't believe I didn't think to go back this time! Good luck and keep us posted!! K x

  • Hi, my son had his liver transplant 7 years ago, he is now 20 , before his transplant he always had a good bedtime routine, but after his transplant he stopped up all night nearly every night of the week , I don't know if it was the tablets or If Martin who gratefully gave his liver to save James worked nights, I wish I knew , he is getting better now but he finds it very easy to stop up all night when his mate comes round, I wish I knew the answer, I wish I could contact the downer family to ask about Martin but James would rather not , I hope you all get a good nights sleep soon , luckyman

  • Hi there, reading your post I really feel for you, sleep deprevation is the pits! My son who's 7 had a liver transplant March 2012 and 2 or 3 nights a week he really struggles to get to sleep and wakes up every 2 to 3 hours. It's not as bad as it was when we first came home from hospital but I put that down to late nights on a busy ward and not really having a routine. However, after a few months I mentioned it to one of the consultants and asked if it could be the drugs and he said no, it's just an age thing.

    Like you I plan to get my own back when he's a teenager, ie wake him up at 4am for no reason and vacuum his room at 6am on a Sunday. There are plenty more ideas where they came from too!

    Best of luck.

  • **a wee update**

    Thanks again for all you helpful replies. I'm utterly delighted to report the sleeping issues are much improved :)

    We aren't sure exactly what has improved but we have tried lots of things at the same time so we are sticking to all of them from now on!!

    We have reduced her Tac a little (although this mean more frequent bloods for a short time)

    We are not letting her nap at all during the day.

    We have started a strict bed time routine - no TV/ipad games after 6pm, upstairs for a bath at 7pm, followed by jammies on, teeth brushed and into bed for 2 books (she no longer comes down stairs after bath). After her stories she gets a kiss and cuddle and told we are just in our room (beside hers) and we'll pop in and out every couple of minutes to check on her.

    If she wakes up at all during the night she is given a wee cuddle and told it's not morning time and she has to go back in her own bed like a big girl.

    In the morning we make a huge fuss of her for staying in her own bed all night.

    First night we had tears, followed by pleads of 'don't leave me, pweeeeease!' thankfully Daddy dealt with it like a pro!

    Second night we had screaming heebie jeebies for an hour. Wails of desperation that she needed a cuddle, pleads of don't leave. Daddy again dealt with it really well, every time she got up he returned her to bed, told her she was alright, he was just in the next room and she was safe.

    Third night we had blissful sleep and were woken at 7am by her shouting from the toilet that she was up and had done a piddle in her potty lol.

    It's been a week and she has slept all night every night in her own bed. She's only had one mild nightmare and went straight back to sleep after a quick cuddle.

    I could dance with delight!! Seriously we haven't slept properly for nearly 3 years.

    The hardest thing is to try and stop her napping if she's had a busy day, she doesn't have much stamina, so sometimes she is almost falling asleep at the dinner table. But we'll keep going like this until it's more established, I ain't taking any chances!!!

    Thanks again for all the advice, the next stop was going to be an osteopath but fingers crossed this improvement continues.

    best wishes

    K

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