Reflux at 7 months causing severe distress, what to do next?

[Kedward]

Im just looking for some advice/support, feeling like i don't know what to do next.... (Sorry about the length of this post!)

My DD1 has had reflux since birth and is now 7 months, it took 10 weeks to finally get a diagnosis as she wasn't failing to thrive - just screaming for 10 hours a day :-( after the diagnosis she was put on ranitidine which did improve things dramatically (she had only slept on my chest and went to sleeping in her Moses basket for periods of time).

I've done most things to try help - wedge in cot, cut dairy, citrus, caffeine etc out of diet (she is still EBF), tried Domperidone after begging doctor but no improvement, up right after feeds (she is sick held upright), infacol, gripe water, colief (which is a right PIA when EBF'ing), gaviscon etc etc

My GP has said she has exhausted all avenues and wants to refer us to hospital but we move house in 2 weeks and so she has written a letter to our new GP and we have to go from there. I'm really concerned now about how long that's going to take as things seem to have taken a turn for the worse.

She has just cut her first two bottom teeth, and during the last two weeks she has been having periods of time where she is really distressed. I can usually feel her tummy churning when it happens she screams really loud from her throat, red hot, crying with tears, sometimes she is wincing as though in pain, arching, if I have to lay her down (ie to put a nappy on as these episodes have started while she is in the bath) she goes totally crazy, kicking me, banging her feet and head, until I get her in an up right position.

I'm giving Calpol for the teething and teething granules, when I can get her to calm down sometimes she does a massive burp or trump afterwards but not always.

I'm in a quandary of what to do next.... Go back to doc, try cranial osteopathy (has anyone out there tried it?), am I being paranoid and should I expect this when teething? What have other people experienced?

She still wakes up frequently through the night, I'm finding weaning quite difficult as she just doesn't seem to want to really eat solid food - unless it's really tasty she won't entertain it, she won't take formula (gags and refuses it) so although I've tried to give her SMA lactose free and nutramigen she won't drink them so I don't know if they would improve the situation. She still gets very bad wind and hiccups all the time, she is now sitting so upright most of the day and only laid down flat for nappy changes.

Has anyone had their baby tested for intolerances? My GP said they can't test but I don't think that's right??!

Help....

Hello,

I really sympathise. It's so distressing not to be able to help their pain.

DS2 had it. We tried everything you're trying and apart from ranitidine which helped a bit, he just had to grow out of it.

Other people have sworn by cranial osteopathy. DS didn't have it due to hydrocephalus, but worth a try.

One thing we did, which is well worth it, was a course of baby massage. A couple of the techniques I was taught really helped massively in getting rid of wind pains for him and I used them for years as he continued to get stomach pains right into junior school.

As to food fussiness - we did have a massive problem with this due to the reflux, and I'd like to offer some advice:

so long as she learns to eat something from each food group (protein, carbs, 5 a day) don't worry if it's not very varied. The key for us was to help encourage meal times to be calmer and more enjoyable.

Offer very small amounts five to ten times a day. Ignore advice for getting her into a three meals a day routine. Reflux babies work differently. Keep food bland but fairly high in calories if you can, as she may not eat much so every mouthful counts.

That sounds hard :(

I would take the referral, it may not be as long as you fear.
Have you done a really thorough milk and soy exclusion diet? Eg no milk or milk products, nor soy, for either of you. No yoghurt, cheese, whey powder, caesin etc, for a good few weeks? Also no goats' milk or other mammalian milks?

Has she been checked for tongue tie?

On the issue of food iintolrances, your GP isvright that there is no accurate test, at least in the case of milk soy intolerance. If your DD had an anaphylaxis-type allergy, they can test for that, though.

A good paed will help you understand what's going on.

Ww had a baby (dd1) who had silent reflux combined with tone issues in her trunk. She was a screamer but we had just about got it under control before we syatted weaning - oh good god - hell on earth. The pain she was in before was magnified tenfold. I can only describe it as colic - just horrendous.

Exclusively BF i followed a strict CMPI and Soy free diet, and weaned her carefully but it seemed as of her digestive system just couldn't process food. Eventually it has calmed down and we've just weaned her off gaviscon at three. Hwr baby sister however is showing some classic reflux signs, sigh.

redwelly our DS had hypotonia in trunk too...it must all be connected.

Thanks for the support and advice. I have done thorough dairy exclusion on my diet for approx 2 months and it didn't make any noticeable difference, I've introduced small amounts of dairy while weaning and she seems ok with it no worse than with non dairy food. At first she literally had pear purée for 2 weeks and was still bringing that up.

I've booked an appointment at our new docs so hopefully we can get a quick referral. Not checked tonge tie with docs but she doesn't look to have it, but will ask.

Thanks for the weaning tips, it's gone slightly better the last two days doing little and often.

It's just good to know that there are other people out there in similar situations, no one where I live seems so have these issues and the HV's don't seem to have experienced it either.