REFLUX BABY

[HeidiOH]

My baby is almost 6 months old (not weaning yet) and we’ve been battling reflux since around 2 weeks old. She hasn’t been able to sleep on her back at all. We did have a couple of weeks where she slept for 3/4 hours but had to be held after that but we are back to hardly being able to put her on her back again. She screamed every seconds she was awake until around 14 weeks (CMPA) She is on Amino Acid milk for CMPA, Omeprazole for her reflux. She was on Carobel but we’ve taken her off as it was making her extremely gassy and didn’t help much with reflux anyway. She has been seen my paediatric osteopath and they have said she has a posterior tongue tie (doing exercises to looser, but possible getting snipped) and they have released some tension in her neck and back. She was breech the whole pregnancy (frank breech for last 6/8 weeks) and born 37+2 c-section.
All doctors and consultants have said they can’t do anything more for us and just have to wait it out. Her Dad works away 2 weeks on 2 weeks off so I am on my own quite a bit (we do have family but they all work so helping with nights isn’t really an option and parents are older). She can be put down for a couple of ours but then the discomfort starts and after that there’s no chance. She will wake up within 15-30 minutes of being put down. She can self settle and does try until it becomes too my and she cries because she is uncomfortable on her back. (Co sleeping not an option for us and she wouldn’t lie next to us anyway she is uncomfortable anywhere on her back).
She’s not quite ready to wean yet which dietician has also agreed not ready due to sitting ability. I am hoping the weaning improves things as I don’t know how much longer I can survive on an hours sleep a day. I am not looking for any solutions as such because I have tried absolutely everything to help her but rather someone who has experienced similar and if weaning helped or is it just a case of until she is up and about a bit more. She can sit when being held just falls forward on her own in a high chair. She can roll back to front one way but since she struggles being on her back she won’t tolerate being down for long and vomits during tummy time. She seems more comfortable on her side but can’t quite stay there yet and I know you’re meant to put them back on their backs anyway. I can’t see an end to the sleeping - or lack of- and I am desperate for someone to give me some hope!!!! My whole maternity has been miserable and I haven’t been able to enjoy any of it. Also don’t know how I can possibly go back to work when I don’t sleep at all. Please please someone tell me how they survived!

Is your baby projectile vomiting? I would try and insist on allergy testing. I know they keep saying babies grow out of reflux as they start weaning but I do know of someone's child that was coeliac since birth and the doctors refused to test till she was 2! And this does sound like a pretty extreme case of reflux.
My son had reflux not as bad as your child but Carobel helped keep his milk down. It might be worth trying again. Also, gripe water helped with the constipation caused by thickening the milk and soothed him. He loved it so much he thought it was dessert with how much he got excited at seeing the bottle.
But other than that, most babies do grow out of it as they learn to sit up and also take in more solids that are heavier so they can't vomit it up.
I really hope your child improves, I know how hard it is seeing your child in pain.

You could try a different amino acid formula or a different thickener.
My daughter has multiple food allergies including coconut. Neocate contains coconut but alfamino doesn't. We knew my daughter was allergic to coconut before going on to formula so we got alfamino prescribed instead of neocate. There are other ingredients which might mean that for a different baby neocate is better than alfamino.

My daughter is also allergic to carob in carobel but settled on gaviscon as a thickener. As a small baby she did need lactulose as it made her constipated but once she got bigger she didn't need that anymore. Her reflux is particularly stubborn and she needed the highest doses of omperazole to treat her reflux for ages her GP had her a on a low-middle dose and we now know that omperazole does very little for her at doses below 2 mg/kg and if in a flare up it has to be 3 mg/kg. She also needs a third medication called domperidone which was the absolute game changer for us. It speeds up the emptying of the stomach and it can be difficult to get prescribed as it's not licensed for under 12s and can only be used after other things have been explored but it made a huge difference to my daughters reflux.

My daughter is in the tiny minority that didn't out grow her reflux and it's only now she is 5 we have been able to start reducing her medication. Weaning for her made very little difference to her reflux and in some ways made it worse but once she could stand her reflux switched to being a night time problem for the most part rather than an all day every day problem. Her reflux has gone in and out of being controlled. The real low points were the entire time under 5 months, 13 months and 3 years where she could only sleep if I was holding her upright waking every 20 minutes. Growth spurts, teething and colds were things that really triggered her reflux to get worse.

We’ve had a few different milks and been on and off carobel too. Omeprazole hasn’t really helped at all and no one seems to care about monitoring it either. GP doesn’t want to help anymore and consultant keeps saying everything is normal. We have had a few hospital visits and they have just told us she looks fine but they don’t see the situation at night or when she feeds as she’s got silent reflux. I have also brought up that she is only drinking 2/3oz every 3 hours at most and seems to have a bottle aversion but last GP just laughed and said she’s not losing weight so it’s okay.
Did you get the Domperidone prescribed by GP or consultant and what age did they prescribe from? Does your daughter vomit or is it silent? How did you manage sleep yourself? I feel like I am not the best version of myself for her because I am so sleep deprived every single day.
I can’t imagine how you have been feeling all this time, you must be such a strong woman! I am at breaking point and not even 6 months in yet. It’s so hard seeing people around you have babies and enjoying their time. I feel guilty every day for not feeling happy and grateful that I am a Mam.

What dose of omperazole are they on and what is their weight?

Domperidone can only be prescribed by a consultant. We went private for a one off consultation as we were struggling to get an appointment with her NHS paediatrician but he then agreed to continue prescribing it calling the combination of omperazole, gaviscon and domperidone the "holy trinity of reflux meds"
It took absolutely ages to get her reflux taken seriously it was only at 4 months when she had developmental delays because of the reflux and ending up in paeds for something else that we got to see a paediatrician at all. They kept rejecting the referrals as she was gaining weight ok, although we now know that she was following a lower percentile line than her line once allergies and reflux were adequately managed and the GP just called reflux a washing problem.

She had mild-moderate sicky reflux and it was only this that the GP was really treating she hadn't picked up that she also had severe silent reflux and her food allergies. Once she was more upright the physical reflux stopped and I'd say that her silent reflux is now moderate and has needed any medication increases in over a year so hopefully we are seeing the end at last!

We did cosleep but to be honest when she only slept with my upright and waking every 20-45 minutes that still didn't give me a great deal of sleep! I developed severe post natal depression. It was really tough when she went through this at 3 as I was back at work and also holding up a 3 year old all night is harder work. She damaged her teeth with the reflux during this flare up as she started chewing on the refluxed feed so I was having to wake her up to stop her doing this. We ended up under 2 consultant paediatrician to help get this flare up stabilised. I had some counselling with my HV during this time after one of the paediatricians referred me back to the HV for support and that helped as I was finding life really challenging.