Silent Reflux, CMPI and the drugs are not working. What can I do?

[webminx]

DS2 is 9mo. CMPI and on dairy, wheat and soya free diet with only egg hard-baked into things like bread. Been on this since February. Great initial results on Pepti Junior. Then it seemed to stop working (return of symptoms and night screaming) and we started Neocate, 1.5ml x 2 Ranitidine, 10mg Losec Mups (omeprazole) and 2.5ml cetirizine daily for 3.5 weeks now. First two weeks, I expected (and got) no change. The we had a magical week where he slept through every night and was like a "normal" baby during the day.

However, in the last week, we've gone back to hell - up most of every night crying/screaming, Only stops when picked up and held; very difficult to resettle - for e.g. Fri night up 8.30-1.30 when I fed him and gave him Nurofen- he then slept til 6am. Sat night, up 7.30pm, midnight, 1.30, 4am and 6am. Last night, up 8.30-10.30pm and 1:00-3.45 am; screaming and wanting to be held and cuddled to sleep, so no sleep for me at all! I"m back to work - this is slowly sending me over the edge.
No "obvious" clues (no temperature, no teething, no recent jabs, no vomit, no obvious wind) but I am assuming he's in pain due to the screaming! Or maybe it's just learned behaviour now the reflux is "under control" - he's quite a screamy and shouty baby during the day if he wants something etc....

This is so disheartening. We don't seem to be able to help him at all and he is so upset. I feel like I'm going mad.

Should we up his omeprazole dosage? We have domperidone also but have not used it - would that help do you think? No paediatric appointment available until OCTOBER 7th!!!!!!

Is it usual to keep going backwards like this? Feels like having a newborn all over again :(. We're all exhausted! Any help much appreciated...

[VomitingVeronica]

Ds1 was also a loud, red and angry chap from 9m to 12m. He got dramatically better when we gave up gluten at that time (I know you already have) but in retrospect it was reflux made so much worse by crawling, esp commando, and teething. He was on nutramigen aa, 20mg of omeprazole and carobel thickening his milk. I really don't have any help to give other than saying that you aren't on your own. Go to a&e if your child doesn't stop crying and ask them about upping his dose of omeprazole. Dc2 has been on 20mg since 2m.

[webminx]

Thanks so much vomitingveronica! That is reassuring although obviously am sorry your DS went through similar. Do you still see flare ups regularly or is it managed well for the most part? Will go to a&e if this continues

[MsPickle]

Check weight gain and all dosages, the boundaries are quite tight and for us less vomiting would improve weight gain faster than expected, although dd's only really started to level out properly once she started walking (sorry) - our GP was able to email our consultant to sort dosages, could that be an option?

[webminx]

Thanks MsPickle - he's never been a puker but definitely a big lad - coming up to 10kg at 9 months. Our GP, I'm sorry to say, is next to useless but we do have a great pharmacist, so I might ask him and see if he can help. It's one step forward, two steps back and I'm really struggling to keep sane with the sleeplessness and screaming. Helps to know it does get better, even if it won't be tomorrow?!

[ArtFine]

My DD went on lansaparazole for reflux and it really helped and the does didn't need adjusting. Maybe ask the peadetrician for that?

[VomitingVeronica]

Just another thought, omeprazole is a bugger to administer. Our rules were no milk/milk sub 2 hours before or 30 mins after, ideally give in an acid eg apple purée, don't crush ever - the little balls must reach the stomach whole and finally once the tablet hits water use within 15mins to make sure it still has full effect. If we messed up any of these steps we were in trouble, more noticeable with dd than ds. Walking/spending most of the time upright was they key. I lay out mini crushing assault courses around the living room to encourage cruising (and to give me time to get the laundry done!)

Good luck, it's hell but it passes. I was even sappy enough to do it again!

[VomitingVeronica]

Sappy?! Meant dappy.

[webminx]

OK, so now on Nalcrom, Lansoprazole & Cetirizine. Also, lactulose for constipation. He seems to be full of trapped wind and his tummy is like a drum. Still screaming head off. Now screaming and refusing to nap during the day also. He didn't go to sleep last night til 2:30am! Urgh!

[ArtFine]

Webminx, give the medicine time to kick in. It was after two weeks on lansoparazole that we saw the transformation, so give it time. X

Have you also tried going dairy free?

[ArtFine]

Sorry you are dairy free.

[webminx]

Thanks all - trying to be patient and he does seem happier in himself today - no screaming since 4:30am! And he napped today without being held to sleep so maybe the meds are starting to work?!

[VomitingVeronica]

That's great! I hope it has carried on, if not just think of all the 'helpful' comments from strangers about how quickly they grow up. If you haven't had any yet then I suggest visiting the supermarket or boots, prime territory for getting the blood boiling when you need to be polite!

[VomitingVeronica]

Ps what is nalcrom? Always keen to hear about another drug!

[webminx]

Just wanted to update that things are definitely improving - albeit slowly. DS now "only" wakes up once or twice a night and is a much happier soul during the day. LOL re "ooh, they grow up so fast" comments - so blardy infuriating! Nalcrom is sodium cromoglicate that's usually used for asthma sufferers I believe, which the consultant said is like a "sticking plaster for the gut". DS takes it before meals three times a day and it's supposed to basically suppress an allergic reaction (or that's my layman's understanding of it). No idea if it's working in isolation or one of the other meds are doing the job, but either way, really hoping the improvement continues as he's so much happier in comparison with four weeks ago! fingers and toes crossed!!

[ArtFine]

I'm pleased to hear about the improvement. All the best x