any experience with a nearly 4 year old losing weight despite eating well?

[purplerainbow]

my ds2 will be 4 next month. He has not had the best of health since he was born. Severe reflux (osophagus was damaged but repaired with meds) he couldnt seem to digest any protein foods when he was weaned. I kept him off dairy and wheat (due to probs with ds1 and by the dieticians/paeds advice) He is on movicol, although he now only needs half a sachet a day as has always been constipated. He has always suffered with stomach ache although has got alot better with age. He has always been a bad sleeper. He had severe sleep apneoa and had tonsils and adenoids out at age 1. He has always had problems with his chest/nose. Various trials with asthma meds (ds1 has bad asthma) has led him onto one lot of steroids which has really helped. He is also on singulair which also helps. He is also on nasacort nasal spray, as he has always struggled with a blocked nose with the bad chests, although im not convinved that has helped him. He had biopsys taken as a baby of the gut...not entirely where from but they were all fine.

He was born on just under the 50th centile and at age 1 was on the 25th. The paediatricians never got to the bottom of what is actually wrong with ds2 but as he had always 'thrived' they werent concerned and was always told 'he'll grow out of it' and we just had to put up with the poor thing in pain. Last month after routine appointment with paed, i noticed he has been dropping down on centiles over the last year. Then over the last few months he has actually started losing weight. In this time iv noticed he seems more tired, more withdrawn and seems quite shy when he is normally a happy confident lovely boy. He is also now reluctant to leave me to go to preschool. Have spoken to gp, and she said she thinks its because of malabsorption (sp) as he is still eating as usual. She considered diabetes but did a finger prick that i think was 4.4 and she said was fine....we are seeing paediatrician next thursday. On the phone he asked me if ds2 had been tested for coeliacs. Well he had bloods done at age 1 which were clear but then he hadnt started having wheat so gp said it wouldnt be reliable enough a result. I dont think it is coeliacs as i dont think he has many of the symptoms. Any one have any experience of this?

[purplerainbow]

bump

[cestlavielife]

ask for biopsy to be redone.
if he has been off wheat then coeliac screen wll likely be ngative so the only way to really look a absoption problems will be annother biopsy

[cestlavielife]

ps they are all coeliac symptoms that you list

[mawbroon]

I have just written a massive post on this thread about ds1

I am wondering about tongue tie in your ds. Same questions to you as I put to op on other thread!

[purplerainbow]

thanks for replying ladies. He doesnt get diarhorrea(sp) though which i thought was one of the main sypmtoms?

mawbroon, he doesnt have tongue tie that im aware of but he does have difficulty with his speech.He cant pronounce F, S at all, says them in a completley different way and alot of people cant understand him. I can most of the time, as you do when they are your own although ds1 sometimes translates if im only half listening! I will read the thread youve mentioned.....

[purplerainbow]

wow youve certainly had a tough time mawbroon. Ive asked gp and im not sure who else about tongue tie and he was checked and said he was fine. He doesnt 'mispronounce' like young kids do e.g say lolly instead of lorry, he literally can not form his mouth to make s or f or d and a few others i cant remember just now. so if he was trying to say SNAKE he says NAKE. Iv tried encouraging him making ssssssssssssssssssssss noise like a snake but he really struggles so we just carry on and i repeat what he says to me but correctly as thats what was recommended? Pre school did a referral to a speech therapist but i had a letter back about 6 months ago saying sorry but we're under staffed and your ds doesnt fit our criteria, come back in 6 months. So i rang them back, had to go through info AGAIN and they said we will review and write to you. So far heard nothing so not holding much hope!

He is seeing his paediatrician next thursday (after being chased by gp) and gp said he will probably request bloods and possibly arrange for another endoscopy

[mawbroon]

Seriously purplerainbow, your GP is really unlikely to know about tongue tie.

DS1's tongue looked completely normal to me until I learned about all this.

The sleep apnoea is also ringing huge bells for me too. DS1 has suffered bouts of sleep apnoea on and off. Tongue tie can be a contributing factor, as can a high palate. High palates are often caused by tongue ties. The tongue smooths the palate as it develops and if normal tongue function can't be achieved then the palate remains high.

this goes into great detail about it. Very interesting

Ssss is a difficult sound to make with a tongue tie because it requires the end of the tongue to be in a point. DS1 can do a pointy tongue since he had his tie properly revised, but before that was unable to form his tongue into a point. But other than that, I'm not sure of detail relating to tongue tie and speech because it didn't really affect us. One thing I do know though is that many speech therapists don't know a lot about, or don't believe that it affects speech. We are seriously lacking in knowledge about it in this country.

I started this thread a while back to find out how many people had been misdiagnosed. Rather a lot it seems.

[purplerainbow]

The sleep apnoea was hugely improved when he had his enlarged adnoids and enlarged tonsils removed. Around the same time ds1 had his enlarged adenoids removed due to sleep apneoa too. Apparanltly the surgeon said ds2 was very young (at just age1 ) to have that operation but obiously it was life or death with him. He goes through these phases of having a very blocked nose/rattly chest (not a cold) and sometimes apneoa re occurs but not regularly. Who would be able to tell me 100% that he is/isnt tongue tied? He talks non stop, even in his sleep! Also have trouble with sleep walking, yet again told he will 'grow out of it'/

[mawbroon]

Might be worth contacting Milk Matters although I don't know if they just deal with babies. If they can't help, they would probably be able to point you in the right direction.

There is also a tongue tie support group on facebook where you can read other people's experiences.

[purplerainbow]

It certainly would be interesting to see if it is linked to his health. I guess at the moment i have no choice but to wait to see what paed says next week. Just abit concerned as to what it could be

[mawbroon]

Btw, did you breastfeed or try to? The breastfeeding experience also can say a lot about the possibility of tongue tie.

[purplerainbow]

no he was bottle fed (long story!)

[mawbroon]

No worries, just that so often when I ask about it, I hear classic tt symptoms being described!

[megandraper]

Lots of coeliacs don't have diarrhoea - my ds didn't. He hAd tired ness bloating, not gaining weight. Irritability and being withdrawn

[purplerainbow]

As i have said, ive kept him off dairy and wheat as advised because of ds1 and because im also intollerant. I tried him on a small amount of wheat about 6 months ago and there was no reaction (that i could tell) i then tried again a few weeks back again there was no apparant reaction but was too scared to let him have full on wheat as sometimes its been hard to tell if its his general health or reaction to the wheat. This week i caught him eating a couple of ds1's shreddies (no milk on them) he had about 4, there has been no apparant reaction. If he was coeliac, then wouldnt he now be in agony? Also m sister thinks that i should give him wheat for when he has blood tests as he thinks if he WAS coeliac and he hadnt eaten any wheat it wouldnt show up? Is she right? Im abit confused about it tbh!