If you’re here to look at stuff about reflux, hello! I hope your babies get better. xxxx Do ignore the rest of the blog – it’s just somewhere to put things…
General disclaimer – I’m not a doctor blah blah and this is just our experience. I wanted to set out everything I have done and namecheck all the doctors, so that others could draw from this if applicable.
Silent reflux – the early days.
So. We have a little baby who has had silent reflux since 8 weeks old. She’s been on neocate milk, ranitidine and gaviscon initially, then omeprazole with her neocate from 5 months.
Obviously GPs know little about these lines of treatment and are sometimes unwilling to prescribe. To get these prescribed, we had to go privately to a consultant, who then wrote our GP a letter telling them to prescribe it. We researched consultants ourselves. We did NOT wait to be referred through the NHS, but simply made an appointment with Dr R Brown in Dr Raffles’ team at the Portland hospital. It took 2 days. The initial consultation was something like 150 or 200 quid. I almost cried during that process because he listened to her chest and just said “Yes, she definitely has reflux”. That was the first time a doctor had actually diagnosed her, prior to that I had decided she had this, through my own research, and nobody seemed able to help me. What a relief. (Well, in a way).
A tip about GPs. We are with North End Road Medical Centre. It’s a very big successful efficient London practice and they have NO problem prescribing expensive things like Neocate. If your GP baulks at the price and refuses to give it to you, or gives you some old bollocks about trying gaviscon for months or your baby just being spoilt… then think about switching to a richer surgery! Not every GP surgery has the same resources. It really does make a difference.
Ranitidine worked to keep her free from pain for a few months. Gaviscon – meh. It probably did something, but only really to help the ranitidine and help the milk stay down. And it helped her get really constipated, hah. We upped the ranit dose about every TWO WEEKS – it really is that weight sensitive. I needed to research the dosages for baby weight and work it out myself. I often found myself upping the dose myself, then emailing the consultant to say “Is this OK?!” Again, I really think it’s up to us parents to get as informed as we can about things like dosages. I know the forums have to tell us to take medical advice. Of course the doctors need to be confirming what treatment is needed, or we could make mistakes with tragic consequences. But all the information you need is there online and in dosage manuals and I wanted to bring my own brain to the problem to help my little girl.
Then Dr Brown moved her to omeprazole which worked very well and she is still on it now. We also switched from gaviscon to carobel which I would really recommend.
Sit up, stand up
My life changed when she was 5 months and could sit. She crawled and walked very early – this was a baby who HATED lying down! It helped the food and milk stay down and gradually the horrible gurgling ceased. The reflux improved until at 7 months she was pretty much, on a good day, reflux free.
However. We are not yet out of the woods. Because weaning.
Honey I threw up the baby rice
The problem now is weaning. We have had to wean very slowly as she’s had random and extreme reactions to different foods, with the reflux coming and going throughout. We started with pear just before 6 months. God, how she loves pear. Pear, pear, pear. Personally, I never want to see another pear. We then gradually introduced sweet potato, squash, parsnip, chicken, turkey, lamb, fish, courgette, quinoa, barley, millet, broccoli, green beans, blueberries, plum, melon… she lives on this lot, pretty much, and is happy. However she has had violent vomiting from oats, rice, apricot, and randomly at other times.
Dr Brown also referred us to the dietician Ana Kristina Skrapec who is ace. She gave me a weaning plan and said do ONE ingredient every THREE days at most, and take it slowly. She showed me what was best to do first and gave me the order of foods to proceed with. It is slow going introducing new things but again, on a good day, she’s OK. We do no p0uches or ready prepared stuff just so we know what she is having.
But WTF is she actually allergic to??
There have been 2 “big” occasions where she has started to react to something and then got worse and worse, spiralling downwards and then gettting better again over weeks. The first was at 7 months after beef and the second was just 2 weeks ago after a bad cold. In general, there is a lot of “noise” in the system – she will react to some things some times but not others, or react when she has a lot of something but not a little… I was at my wit’s end trying to work out whether she is in fact reacting to any of the foods I am giving her! She has now also started to get hives and rashes on her face and dry skin on arms and legs sometimes. Again, not necessarily correlated with new foods.
Dr Brown eventually said “She’s been on omeprazole a while and I don’t know any more, she needs gastro-enterology help” and referred us to Neil Shah at Gt Ormond St.
Dr Neil Shah makes sense of it all
We saw him yesterday and he was great. Again Bupa paid for one consultation.
He explained things in a way which I will now try and reproduce. (Ana K says this stuff too). I’m not a medical professional so apologies if I get it wrong – I find it a really useful concept though!
The gut is like a membrane, letting some things in and keeping others out. If something gets through that shouldn’t, it can cause irritation. All fine if the gut starts by being OK, but if the gut is already irritated, it swells. Imagine this on a molecular level. I find it quite easy to imagine. Swelling means all the molecules move apart from each other, leaving spaces between them. So, a cheeky little molecule can get in through the hole, which it wouldn’t normally do. You’re not ‘intolerant’ of chicken, but if your gut is already inflamed, eating chicken might make it worse as the chicken molecules ‘get in’ through the gut wall. Hey presto, you have more of a reaction, the gut swells more, it all gets worse.
My baby has a huffy gut!
My baby has a gut like a very easily offended person. We never know what might piss it off and then when it starts to react it totally overreacts! The hives and skin problems are the same thing.
The summary, then, is that for us reflux is now just a symptom. Dr Shah says we need to calm down her gut, stop it overreacting and then when she is on an even keel, test to see what she is actually intolerant of. It may be that she will just grow out of it, or there may be one or two true trigger foods. This helped me because he said it’s not my fault – I’m not feeding her the ‘wrong’ stuff – sometimes the food isn’t actually the point. We focus on the food choice and assume that if we stop the trigger food, the reaction will stop. This isn’t necessarily the case. Sometimes she could be reacting because her gut is reacting. I found this very helpful to make sense of the whole confusing picture.
Dr Shah has prescribed her antihistamines and antibiotics (which have anti-inflammatory properties) with the aim of getting the omeprazole reduced when she is no longer so reactive.
Other things we learned was that babies in this position usually have lower immunity through the winter months to ear infections – the antibiotics should help with that as well (even tho v low dose).
I don’t know if it will work. We are only on day 1 of the treatment. I have grave reservations about putting her on more medication.
But we have our fingers crossed that it will all help her.
I hope this offers useful food for thought for some people.
Love S x