please help me and ds2 :(

[purplerainbow]

I posted this in sleep yesterday but thought id try here for anyone elses help that may know anything medically helpful.

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

From a quick google it looks like insomnia can be a side effect of singulair. Is that something you've looked at?

Have you considered dietary approach rather than adding more meds?

I'm not adding more meds, we've been trying to reduce them but his health has deteriorated. He was taken off singulair (to try to reduce the amount of meds he's on) for a few months and there was no change to his sleep whilst he wasn't on it plus he was only put on it about a year ago so prior to that had the same sleep issues

It takes ages for wheat and dairy to get out of the system and that alone can temporarily make things worse when the bacteria/yeast living on gluten start leaving the body (the unsettledness could be related to that).

Just stopping the meds would prob not help w/o careful look at foods.

You could try epsom salts for the bath (relaxing) also vit Bs in doses suitable for age, also probiotics.

You could try gaps diet it might help (good reading too)

He doesn't have dairy or wheat. He last was tried on wheat a few months back. My feelings are that it is something physically wrong with him as he still snores, restless flapping around in sleep, still sleep walking sometimes and sleeping in odd positions. A lot of it points toward sleep apnea but as I said he had his tonsils and adenoids removed 3 years ago!

yes, I saw the gf/df diet in your 1st post
You also mentioned inability to deal with proteins, my ds was similar and I had to look into it, as mine had aminoacids deficiency. Thing is that all enzymes in the body are made of aminoacids and some are essential and need to be obtained from diet.

You metioned damaged oesophagus, could it be scar tissue somewhere there in the throat?

He's ok with protein now (well better than he was a baby that's for sure) it was just yet another thing they couldn't answer why! The oesophagus was burnt from the severe reflux. He was put on the meds until he was 2 and he doesn't seem to reflux anymore that I'm aware of. Would that cause scar tissue? Would that have shown when they were removing tonsils/adenoids?

Hard to say, but not impossible given the ops he had.

Just remembered, soon after going gf my ds reacted badly to soya in a very similar way to wheat/gluten - do you rely on soya much?

There is also something called floppy larynx which is related to low muscle tone in the throat area..

Protein, well, I worked out on my ds that he couldnt digest some types of proteins, like soya, gluten.. humans can deal with animal proteins better than veg based ones. I cant have soya myself.

No he has no soya as was told with ds1 (allergic to dairy) I was told avoid soya. Ds2 has goat cheese but no milk at all! Sometimes I make lasagna with goats milk. No soya at all though. Floppy larynx was mentioned when he was a small baby....nothing since though as I was told they only have it if they make a noise when breathing asleep?

I think I would try probiotics and zinc/b vit supplements suitable for his age, they help to boost immune system without stressing the body

He has zinc and vit b already. Doesn't have probiotics though

If you want to drop the movicol, you could try using flaxseed (linseed). Add some to his food. That usually helps DS1, and he was on 1/2 a sachet for quite awhile. If the digestive problems has been ongoing, then he may have some nerve damage in his bowels, which is why he needs the 1/2 sachet tpo keep him going as his body isn't telling him. Sit him on the toilet straight after a meal, as there is a change in the body after a meal which assists the bowels in pushing things out.

DIY, what an interesting observation re opening bowels after a meal, I noticed that in myself and my ds (and even my cat!), what's the theory behind it?

I also agree with you on linseeds, they are part of our menu daily, I have them in an adjustable grinder and use them at every meal, just a few turns.

It's called a gastrocolic reflex, and is in response to food passing from the stomach into the upper intestine. For someone with nerve damage it's the best way of getting them to go regularly. It's the nerve endings in the bowel when it is stretched that tells the body that it's time to go to the loo, if the bowels have been overstretched the nerve endings can become damaged.

I think the linseed works because it is oily. Adding fibre can actually make constipation worse for some people if it is a dry fibre.

Thank you DIY :) very grateful
yes, this was almost certainly the case with my ds as he also had nerve damage elsewhere and was my gut feeling that nerves were somehow involved but never found it explained

Your wecome, nightcat. Actually any nerve damage at all can lead to constipation. If there is any disruption in the nervous system, especially in the spine, either the message can get lost, or at the very least, the bowels can work slower. If they work slower then some of the water in the stool can be reabsorbed back into the body. That is when things like weetabix, which you would think would be great fibre, can actually make constipation worse because they lose too much water. An oily fibre can work better.

I did a lot of research online for DS1, and it was actually on sites that dealt with bowel training for MS sufferers that I finally discovered this information for the first time.

He has omega 3 oils. I take flaxseed oil, that any good? Have tried dropping the movicol, he knows when he needs to poo, takes himself off but just can't go. Gets bunged up. I don't think his belly is the cause to the night wakings. If he slept well, he'd behave better, perhaps start growing again and maybe then I'd be able to narrow things down. Just can't get there

I really don't know, but if he needs the fibre then perhaps using ground up flaxseed would be better. The paediatrician thought that if DS was on only 1/2 sachet then there probably wasn't much of a medical problem. However if your DS is trying to go and can't, then obviously it is a medical problem.

With DS2 he had a problem with rice when he was little, because as it moved through his digestive system it expanded and caused him a LOT of discomfort. He cried from around 10 pm onwards, as that is roughly when it hit the painful area in his digestive system. He grew out of it, but if your DS has a problem digesting food the it woudn't be unreasonable to suspect that his digestive system might have a part to play in it.

Sorry, meant to say - might have a party to play in his waking up at night.

he has half a sachet a day. I think the most he ever had was 1 sachet. Ive asked his paed is it ok him on it for so long and he said that aslong as he isnt soiling himself its fine. He said he 'just has immature bowels' and that it would 'improve with age'

I wouldn't worry about him taking the movicol, all it does is redirect water to the stools to soften them. It's not going to 'change' his digestive system or harm it in anyway.

Have you kept a diary? Record what he eats, how he sleeps, how he acts during the day (lethargic, grumpy, chirpy, finds it difficult to focus, etc), how he settles to sleep, whether he gets up at night. A bit of a pain, but it could be valuable in the long run.

yeah have kept diaries for a few weeks at a time and i cant see anything that makes sense!

When something is introduced or eliminated I believe the effect can take up to 10 days to show - so I'm afraid you will need to keep a diary for a lot longer than that.

Sorry, no I meant a diary generally, I don't routinely eliminate or add things to his diet. He eats the same as what he always has done. I tried to introduce wheat a couple of times over last 2 years.