can anyone PLEASE help me?? :(

[purplerainbow]

Ill try to keep this as brief as possible so please bare with me.

Ds2 is 4.1. He was born term normal delivery. Was poorley since birth. Very bad reflux, osophagus was damaged, was on various meds for 2 years. He has had digestive 'problems' of which wasnt really ever resolved. Was always in discomfort in his tummy, was tried on various medicated formulas. When he was weaned he couldnt digest any 'protein' foods. Would struggle to poo and had awful tummy ache. This improved with age. He was put on movicol due to constipation about 18 months ago.

He had severe sleep apnea and had his enlarged adenoids and tonsils removed at age 1.

He was also VERY bunged up and his chest very rattly. He had a test for CF was negative. He was under gastro aswell as ENT. The ENT probs have improved with age/drugs. He has had various biopsies taken, and had his nasal passages quortorised last september but this failed to help him. ENT then discharged him as they felt they couldnt help and he would 'grow out of it'.

His paed and GP decided to trial inhalers as his brother has bad asthma. This has helped his rattly chest and night cough.

SO....He is on half a sachet of movicol a day. If i stop this he gets bunged up. He is on a steroid for the asthma. 2 puffs twice a day. He is on singulair tablet for the asthma side of things (tried coming off these few months ago and chest deteriorated so back on them) he is on nasacort nasal spray for his nose/bunged upness. He had allergy tests done and nothing showed up although i keep him off wheat and dairy.

He has NEVER been a good sleeper. When he was a baby it was down to pain/sleep apnea. He stopped napping at age 2. He has had sleep studies done in the last year to check sats, they think he is just sleep walking and will 'grow out of it'. Since he was put in a bed at age 2 and a half has got out of bed repeatedly during the nightm up to 6 times. Have always put him back to bed and he goes back to sleep. He doesnt talk, or do anything, so the doctors are convinced he sleep walks to me at night. I used to sleep walk so im quite open to this suggestion. He is currently on melatonin to try to keep him asleep but its having no affect. He snores quite badly, not frm the back of the throat noise a man makes, it comes from his nose and does disturb him. He also thrashes around. I dont just mean the usual sleeping in odd positions like kids do, i mean for half the night he tosses and turns and moves so much.

Ive seen a sleep specialist who was lovely but said im already doing everything she wouldve suggested. Sticker charts, rewards, putting him straight back to bed when he gets up. NOTHING MAKES A DIFFERENCE! Im so tired that lately when he comes to me in the night i just stick him in my bed as im not awake enough to remember to get out and put him back! So at the moment he goes to sleep in his own bed and wakes in mine. Iv had enough and cant cope much more. I just dont understand whats going on. If he comes into my room and i put him straight back to bed, this could happen say 4 times a night, in the morning hes ADAMENT he slept in his own bed all night!

Im so sorry this is so long and boring but its really affecting us 3 and our relationships at home as we're so tired :(

[purplerainbow]

Wow u sound so knowledgeable on it, thanks! Shall give it a go. Last night I slept on the floor next to his bed. This is wierd, for the first half the night he actually slept worse than the second half. He kept me awake for a while just tossing and turning, going upside down. He puts his body in odd positions. Then he snorts when breathing and tosses and turns (which is why I think this is what is causing the disturbed sleep) then it turns into snoring. He then tosses and turns. Goes on for hours. Since he's been on the singulair his chest is loads better and his nose isn't congested. He used to have a nose that was always full of crusty bogeys that I had to clear (gross I know) even during the day. He also used to constantly make an odd noise, half a cough, half a clearing throat noise which gp said she thought was post nasal drip. Thankfully, as I said he's stopped doing that since being on the singulair.

He's currently watching tv sat next to me and isn't breathing through his mouth.

[MistyB]

Perhaps if you could get him to nose breath for that bit between 7 and 12 he might not fill up with mucus, over breath (a Buteko term) and he might get a bit more restful sleep in the next slot and then move it forward over time (if it works, I wish I could guarantee that this was the solution for you, God knows you have tried enough avenues!!)

If you wanted to try it...

Use the nose clearing exercise during the day.
Get him to close his mouth through the exercise.
Breath out through his nose
Hold his nose without breathing in first, and gently nod his head backward and forward for as long as is comfortable, try counting to ten first.
Breath in through the nose, then continue breathing through the nose.

It may take a couple of repeats to get his nose clear and to get the technique right.

Then during the day, remind him to breath through his nose only and to close his mouth. If yu can get him to lie on his tummy up n his elbows while watching TV playing a board game or reading a book with you, while you check he is nose breathing, this will all help to get this to become a habit.

Then at night, you are his 'guardian angel' watch him and gently close his mouth if it falls open. He should sleep on his side in the fetal position.

(His history is very similar to my boys, though they have not been as ill as your DS, the gut problems, wheat and dairy, mucusy, going from one specialist to another, being told they will grow out of stuff and being discharged when the problem has not gone away - I feel for you!!)

[purplerainbow]

Onwards

[purplerainbow]

First half of the night he generally sleeps ok, asleep by 7pm and then normally fine until about 12 oneards

[MistyB]

It should kind of snowball. Nose breathing during the day and as you can at night, more settled sleep, more nose breathing at night.

IME, it's like peeling an onion, you have to address each of the health issues as they arise and bit by bit hopefully your DS will improve and sleep will follow.

Sadly, there is no magic solution and not everything works for every child.

Good luck! You must be at your wits end.

[purplerainbow]

Thanks, I shall have a google later. Trouble is he doesn't keep still! Not sure how I'd be able to hold his chin etc. Shall definitely have a look online for it.

[MistyB]

Google Buteko technique and look at the book, Close your Mouth by Dr McKeown, should come up on Amazon if you search for Buteko. It is a simple book that talks about how to teach yourself / your kids to nose breath. I know it doesn't work for all asthmatics but it can be really effective. I slept with my son for three nights during an asthma episode with him lying on his side and I put my hand under his chin. We also regularly lie on our tummies to help breathing posture and remind him to breath through his nose. It has helped his mucus production, his chest and his sleep.

[purplerainbow]

Btw, the stopping breathing isn't regular and isn't for that long and apparently its quite 'normal'

[purplerainbow]

Yes he does. Another pointer toward sleep apnea but as I said, he had severe sleep apnea as a baby, would stop breathing for very long periods, confirmed by sleep study. He had enlarged adenoids and tonsils and it really helped/improved when they removed them. So I can't see what else could cause this? He is actually under weight now so can't use his weight as a cause either.

[MistyB]

Does he breath through his mouth?

[purplerainbow]

I tried doing that for 2 weeks. I slept on the floor beside him. Every time he sat up just laid him back down. Made no difference. I sleep just as bad in his room as he snores and doesn't stop moving

Last night I made HIM a bed on his floor to see if he needed more space.....nope he still got up. I have a fed ache from lack of sleep.

[sunshinerainyday]

sorry to hear it was another bad night for you. It is so tough carrying on day after day with disturbed sleep. Can you put a mattress on your floor and surrender your bed for a few nights and sleep on the floor in your room with him in the big bed until you have the strength to battle it all again?Its those first few hours that you go to sleep that are so important for you. x

[purplerainbow]

Another awful night. I left him to stay in my bed when he came in as just too tired to put him back in his. He sleeps in really odd positions, spent the whole night upside down, fritting about, kicking me. I have a king size bed to myself so you'd think that was space enough for a small 4year old and me! So so fed up

[purplerainbow]

he sleeps in a proper sleepsuit aswell now just incase he does wake up cold but cant see any difference. Ds1 doesnt wake up at all in the night from anything, onlly the odd bad dream

[purplerainbow]

hes always been 'warm', both ds are. they dont seem to feel the cold like i do!

I dont think he has any sensory issues that im aware of and preschool certainly havent mentioned anything either.

[FrustratedSycamoreSnowflake]

Sensory as in touch, does he respond "normally" to touch?
(My dc is (amongst other things) hypermobile, which is, on a basic level, extremely double jointed but the way the OT described it was that dc wasn't getting the same feedback that you or me get from objects, so for example big firm hugs feel like a light hug, but a tiny scratch can be agony.

Can he regulate his temperature okay during the day? (Also have a hot water bottle child), could he be getting hot, kicking off blanket, the getting cold again which wakes him?

It might be a case of trial and error trying to figure out the cause and cure of waking. And even then something that works one night might not the next. But I do hope you all get some decent sleep.

[purplerainbow]

sensory issues in what way? He gets very hot and sweaty at night and if i tuck him in tight he kicks at the covers (in his sleep) until they come off

[FrustratedSycamoreSnowflake]

Does he have any sensory issues?
We have been advised to tuck dc up very tightly in bed (an extra sheet, long ways across bed, firmly under mattress on both sides) which helps give dc the sensation of being hugged, and helps dc resettle.

[purplerainbow]

Iv just put the chest noise down to asthma as since hes been on the inhaler he doesnt really do it anymore, only if he gets a cold

[NotWankinginaWinterWonderland]

My son was checked for the same sounding noise, still to this day I have no idea what it was, mine only ever did when he slept, so it was difficult to have a Doctor listen, we even took him to hospital to have a sleep and be monitored but sure enough,he wasn't wheezing/rattling/noisy enough.

I'm sure he grew out of it by 2nd year in Nursery

[purplerainbow]

im not sure it is 'kidnaps'. Its the only one can get from paediatrician. Hes on 6 mls.

No its more rattly than wheezy...that has got much better since starting inhaler

[FrustratedSycamoreSnowflake]

Is the melatonin time release or all in one go?
The latter gets them to sleep but doesn't keep them asleep, if it is the time release is the dosage okay?
(Also with melatonin it works better if breaks are taken regularly,)

[NotWankinginaWinterWonderland]

Is it a constant wheezing noise purple?

[sunshinerainyday]

I was told to put them back next to their bed, but that they had to climb into their bed themselves so there was no dependency on being put back in to bed even. we also rigged up a rattle against our door so he couldn't creep in unnoticed.

[purplerainbow]

i want to know whats still causing the snoring and why hes so restless when hes asleep? I think that is the route of the problem...