2 year old with painful wind since birth - no sleep and desperate!!

[Angeljayne129]

Hi all!

This Is my first post (so please be kind )- I've been reading the threads since my DS was born but haven't found any answers so I thought I'd give posting a try! Apologies in advance for the long post!

Basically, when DS was born he didn't feed properly for a week - combination of severe tongue tie, jaundice, complete lack of interest in breastfeeding, midwives who told me NOT to bottle feed despite them knowing I had a botched breast reduction at 21 which meant my production was low (combined with being anaemic due to blood loss in labour).

After 4 weeks of struggling to get DS to feed, waking him every 2 hours for a bottle (gave up BF after 4 days as DS never once latched) we got his tongue tie divided - he began to feed better but more troubles started.

GP said colic/reflux but he would scream until he passed trapped wind. Did all the usual - bicycling legs, infacol, colief, warm bath, massage - changed bottles and formula under guidance from health visitor. GP prescribed infant gaviscon (which made no difference) nutramigen in case of mill allergy (made him worse) and said he'd grow out of it. We ended up in A&E because he'd get so bloated and screamed for hours till he passed out - only to wake and scream again till he had got all the wind out.

He would have periods where he was fine (usually when we had changed his milk) but within 6 weeks it would all start again.

At 7 month old, this problem because permanent - every night he would either struggle to go down to bed or he would wake 40 mins or so after going down screaming in pain until all the wind was out of him - and my gosh he had a huge amount of wind. It could take hours for him to pass it all.

He was diagnosed with silent reflux and put on ranitidine (made him constipated) and lactulose (made him more windy).

Eventually saw a gastroenterologist when DS was 14 months old who fobbed us off and said it's constipation - she switched his ranitidine to omeprazole and prescribed movicol. DS was not constipated - his poops were always like soft play doh (sorry for tmi) After 3 months on new meds which gave him very loose poops she discharged us - even though nothing had changed. He had allergy testing (no allergies to cows milk or soya) and negative celiac test.

DS is now 2 - he goes to bed at 7pm - will wake at 11 - 12ish and be up with wind until 4.30am (hence the late night post!) He will cry and scream unless distracted whilst he passes the wind - sometimes there is a huge amount, sometimes not so much but it takes ages to get out. He is in pain with it, it's not just a but of trapped wind - whether it's cramps or tummy ache i dont know. DS (when he has no wind) is a great sleeper - slept through from 8 weeks and loves his sleep - begs to go back to bed but is so uncomfortable he gets upset. His behaviour changes when he has wind - almost manic as he is so uncomfortable.

GP has taken him off all meds to see if there is a difference / if his reflux has gone and he is no better or worse off them. DS hates to drink milk or eat dairy but we still offer it. Dietician tried him on a low FODMAP diet and nothing changed. Dr suggested IBS but his wind is constant now, diet and probiotics and meds have made no difference and his tummy ache doesn't end with a bowel movement so ruled that out.

DS babbled but only has about 10 words- likely due to the complete exhaustion and lack of sleep he has. He's shattered, I'm exhausted from being up 20 hours a day and have a 9 week old DD too (who thankfully sleeps like a dream!) And I'm literally at the end of my tether. GP diagnosed 'low mood/Depression so I'm currently on fluoxetine which has helped me stop feeling so broken but doesn't fix my situation. Husband is exhausted too and we have no life other than the groundhog day we are trapped in. Very little family support too. We have been referred to Birmingham Children's hospital (appt 4th Jan) for a second opinion as GP doesn't buy into the whole IBS constipation thing.

Has anyone experienced anything similar with their LO's - there are so many posts about windy LO's but no one ever posts the outcomes or diagnosis they had (or indeed when their LO's grew out of It!). I'm literally at a loss of what to do.

Any help/ advice/ anecdotes is much appreciated. Thanks for taking the time to read my ramblings!

This sounds exactly like my DS. I’d get him checked again for Tongue tie again. This is what wa going on with my DS and they can reattach. Also, a tie might have been missed the first time.

If he’s not keen on dairy, have you read up on CMPA. I have this and was always told as a child I was a fussy eater

It might be worth asking your GP to refer him for allergy testing.

Had his tongue tie checked again recently (DD was referred as she had a bit of trouble latching and the Dr checked DS then too) - often wonder if it was divided too much he can stick his tongue out so long now!

There's always been a query over milk and gluten intolerance - definitely came back clear on an allergy test as ok with cows milk and soy so it's not that.

I'm similar in terms of I don't like dairy - I don't know why I just don't like it and avoid it, I have the tinyest bit in my tea. Bread also bloats me but it's not particularly painful? X

Was it a GP who checked for tt? It might be worth getting them both checked by a Tonge Tie Practioner instead.

Has he every been tested for Coeliac?

It was the consultant maxillofacial consultant so I'm happy he's right about the tt. He had the coeliac blood test when he was 15 months old and it came back clear.

Tested for milk, soy and egg allergy too and only came up with a mild reaction to egg white x

You can have allergies but test negative you’re testing: they are called non-ige allergies and usually involved delayed gastro symptoms to foods. They used to be called intolerances. You can therefore be allergic to milk/soya/eggs but have negative allergy tests. The best way to check this is to completely go dairy free for 4-6 weeks and see what happens with symptoms (same for soya, wheat, egg etc).

Obviously you should talk to your GP or HV prior to eliminating an entire food group, but from how you describe it, it sounds exactly like a non-ige reaction to something.

Sorry, rushing and typing: it wasn’t clear that you should just try one thing at once ( and see how you go (dairy is most common, then soya, eggs and wheat -not in that order), but you need to make sure you are replacing the calcium (or whatever you are eliminating) etc :)

Totally agree with allergy tests coming up negative but Yiu still have the allergy. The exact same thing happened to me but everyone agreed I had non-ige CMPA. I went completely DF and after 3 days was much better, after 2 weeks I felt like a new woman

I think it's so difficult now a days as there are so many allergens in so many different foods so we've never been able to pin point anything specific causing him discomfort - especially as non ige can take a day or so.

It's just been weird how for periods of time he can be fine, no excessive wind, sleeps brilliantly and then with seemingly nothing changing he's back to waking in pain - surely if he was intolerant to something he would react like this all the time?

surely if he was intolerant to something he would react like this all the time?. I suppose it depends on what the allergen is and what form he’s having it in. I can tolerate Soya lethicin but if I have Soya desserts, Soya butter or Soya milk I’m in agony for a few nights.

I agree with the PP. There are different levels of allergens and it would cause what you describe.

My son is fine with soya yogurt, a small amount of soya milk on cereal etc, but when he started drinking soya milk by the glass he was horrifically poorly. We stopped the soya milk drinks and he was back to normal again.

In fact reacting how you describe is a classic non-ige allergen reaction. Have a look at the Soya Ladder, Egg Ladder and Milk Ladder, it will make sense when you see if I’m black and white.

You need to pick one thing and cut it out completely (as I suggested above, whatever you think is most likely) and go from there. If you don’t try it you won’t know which it is. Keep a detailed food diary and write every allergen and it’s form down and then look for patterns if you don’t want to cut anything out of his diet.

Hi, i literally feel like I write this post. This describes exactly my daughter and our past 2 years. Please tell me how things are now. The sleep deprivation is so awful. I hope things got better for you. Please tell me there's hope