If you read my last post, you’ll know about Frankie’s reflux. That was our reality for her first nine months of life, but the last few weeks have started to see an improvement. We are having good days. A few with no sick whatsoever! Halle-bloody-lujah! She still has bad days, but with some better ones, and a few hours more sleep, they are far easier to deal with.
So I wanted to explain how we reached our new, improved Frankie and a CMPA and non-IGE allergy diagnosis.
From day dot, I knew something wasn’t right. Aside from the sickness, she never comfortably settled to feed, always writhing around, crying, arching her back. She had excema all over her, which was passed off as newborn rash when it appeared , but quickly worsened, becoming red raw in places.
She also suffered with what I thought was hay fever. This started in spring and Dr Google told me it was highly unlikely, yet possible in a month-old baby. Her eyes were constantly streaming and she often woke, unable to breathe through her snuffly nose. Her nappies were horrific.
But aside from these physical symptoms, she was a constantly busy baby. I know some babies are just active, but she was rarely ever still or calm. She rolled over at three months, so uncomfortable on her back, that she defied milestones to get into a better position.
Despite all of this, though, she continued to put on weight and thrive. This fact, it seemed, made it difficult to be taken seriously.
At the first GP visit, we were prescribed infant Gaviscon and recommended comfort formula. Gaviscon made her horribly constipated and did nothing to relieve the sickness. So after a few weeks, we gave up.
The comfort formula reduced symptoms, and we began to visit a cranial osteopath. With these interventions, the excema became less angry and the respiratory problems lessened, so we accepted the sickness and nappies. We did try anti reflux formula but she point-blank refused it.
We’d been told repeatedly that ‘lots of babies are a bit sick’. So as other symptoms subsided, we felt we had to accept we just had a ‘sicky baby’.
It was only when Tesco was out of comfort formula when she was about three months old, that I realised the nappies had been worse and the sickness no different on comfort formula, so decided to try her back on first milk formula. BIG bloody mistake. The next few days were hell, she was throwing up constantly, screaming in pain, diarrhoea, runny eyes and nose and sore skin.
Although horrific to watch her suffer, this is what made me realise enough was enough. We’d put up with the sickness, but I realised that if I was being sick 30 times a day, I would be demanding to see a specialist, I’d be going to A&E. So why wasn’t I doing this for my baby?
Perhaps it was because most babies are a bit sick. Perhaps because the GP seemed to think I was ‘one of those mums’. Perhaps because she was putting on weight. I don’t know, but I do feel awful that I didn’t push for more help sooner.
I spent a long night researching Frankie’s symptoms and the ‘cures’. Comfort milk is hydrolised, meaning the milk proteins are broken down and easier to digest. Perhaps then, it was the cows milk protein causing the problem, as when it was hydrolised, the symptoms lessened. On further research into CMPA, she fitted most of the descriptions and I became sure she had some kind of allergy.
From then on, I decided I wasn’t going to be fobbed off again.
Back to the GP. A prescription for ranitidine.
A week later, no improvement.
Back to the GP.
A Nutramigen prescription (a hypoallergenic formula, even more hydrolised, but still cows milk based) and Carobel (a food thickener). A slight improvement, but still sickness and bad nappies.
The frustrating thing when you’re watching your baby suffer is that each solution needs a while to work. You need to give it time to get the last thing out of their system to see if the next thing is working.
It wasn’t.
Back to the GP. In comes crazy double buggy lady.
This time, an amino-acid based formula, Neocate.
I also asked for a paediatrician referral, but was put off as it ‘would take ages’ and encouraged just to go home and see how she went with the Neocate and a dairy free diet.
Meanwhile, in desperation, I booked a private paediatrician allergy specialist. We couldn’t go on like this, I was at breaking point. That sounds dramatic, I know. We weren’t facing death, but it felt like hell on earth.
Dr Chakravarti was the first person to take me seriously. More than that, he knew exactly what was happening with Frankie. He listened carefully, then started to second guess the answers to his questions (right every time) and quickly diagnosed non-IGE allergies and put her on a dairy and soya free diet, with restricted egg. He also prescribed omeprazole and an antihistamine.
By this point, though, Frankie had started to improve. She had periods of no sickness. An hour or so of relief here and there. The Neocate seemed to finally be doing its thing.
But still a few weeks later, even with a further improvement with medication, she was still being sick.
I took to Facebook. I am part of a hugely supportive and kind group of CMPA parents and sufferers. They told me Carobel could be the cause.
I spoke to Dr Chakravarti, who agreed we could try to remove the Carobel as the drugs should have worked by this point.
And that was the final link in our chain. We stopped adding it a few weeks ago now and slowly but very surely, her symptoms have been disappearing.
I finally have my happy, comfortable sunny baby back and it feels so good. To see her play, without being on sick watch. To be able to let her go and explore after a feed without holding her still to stop it coming back up. To watch her sleep peacefully. To see her content and calm (sometimes). It’s wonderful and was worth every ounce of fight.
It’s a learning curve to feed a baby on a dairy free diet. And soya free is a nightmare – you don’t realise how many things it’s in until you need to avoid it. But slowly you work out what you can and can’t give them and you find a new normal. You get used to reading every list of ingredients. And it’s all 100 per cent worth it.
We’re going back to the paediatrician soon for an update, Before we go, we need to reintroduce soya. Which I’ve been putting off for weeks now. When you’ve finally got onto an even keel, it seems so wrong to potentially upset her system again. But it’s not certain that she’s allergic to soya, it’s a similar protein to cows milk, so it’s often advised to eliminate both until baby is better.
If you’re still reading (it’s been a long post!), you’ve probably got a baby with allergies, or suspect you have. If you’ve not yet been diagnosed and accessed the help you need, please keep knocking on your GP’s door. Trust your gut. Your baby can be better with the right help.
What can I say but…..have I just read our life story over the past 6 months! Almost in tears because your story is exactly what we have been enduring……even down to seeing Dr C privately!! Where are you based? Please get in touch – I would love to speak to you x
Hi Vicky, I’m so sorry to hear you are going through this. What did Dr C say? We are based in Herts and I’d be more than happy to chat to you. The best thing I can tell you is that it does get better. We’ve got Frankie’s allergies under control 90 per cent of the time now and when she does have a flare up (like today), they tend to pass quite quickly. Drop me an email at [email protected] and lets chat about strategies. This stage is soul destroying and you feel so helpless, but it does get better, I promise xxx
Hi, may I ask why the Carobel didn’t work please?
We have just started my son on it and he seems to have improved with a lot let sickness and less clear fluid being brought up.
However, we do still have some back arching. So wondered if the Dr gave you a reason as to why it might cause an issues
Many thanks xx
Hi there
Glad to hear your little one is improving. Carobel didn’t work for our little girl but that’s not to say it won’t work for you. I believe Carobel is made with Locust Bean Gum which can be the problem for children with CMPA. I was told about it in a Facebook group for CMPA support, so it’s worth checking in with them to see the reason behind it.
Sorry I can’t be of more help but it’s been three years since Frankie was on formula and I can’t remember exactly the reasoning.
Good luck
Katie x
Hi
I am due to see dr c on the 27th June . How long did it take for Neocate to work? We just started and he seems hungry more quickly on it and his reflux seems worse as it’s thinner.
Do you mind me asking what tests dr c did ?
Katherine
Hi there
The Neocate worked pretty much straight away for us. Nutramigen didn’t. How is he getting on with it now?
Dr C didn’t test her to start with, just examined her, and got us to eliminate dairy, soya and egg from the diet and see how she went. It fixed it pretty much straight away. We then went back for skin prick tests before reintroducing anything to check she wasn’t IGE to anything first.
I hope your little one is a bit better now
Katie
Hi there!
This is exactly our life!! It has been a very depressing and isolating journey for us and I’m sure your very familiar with the ache! I’m sure the DR’s attitude to this whole gruelling journey has spiralled me into a spot of PND!
Anywhooo! We’re in the same boat! We’ve trialed all formulas – now on neocate! We’ve trialed rinatidine, omeprazole and now lansoprazole!! Still no joy! The only thing we haven’t done is eliminate carobel! So reading this has giving me a bit of a eureka moment! However… I’m worried about the dark place it’ll take me without it especially with neocate being so thin! Did you continue without thickener or did you find an alternative?
Hi Lily
I’m so sorry to hear you’re going through a similar thing and that you’re not getting your situation taken seriously. I think you have to go through it to really understand how hard it is, so I feel your pain.
Yes, the Carobel was the final link for us. I took it out altogether and went with the neocate as it is and she was fine. Obviously if the Carobel is causing the problem, it won’t matter how thin the milk is as nothing will be causing the sickness any more, so I was at a point where I would try anything. I did order an alternative from Amazon, which I’m afraid I forget the name of, but was recommended it on the CMPA Facebook group, so have a look on there. But I never needed to use it in the end.
I’m wishing you all the luck in finding the solution and hope the Carobel is the answer to getting your little one better xx
Thank you so much for the quick reply. Up at all hours again doing my crazed extensive reflux/cmpa research.
It does sound just like our journey so maybe it could also be our final puzzle piece! I’d do anything to take her pain away.
Have you continued with the ppi medication? X
Hi Lily
No problem at all. Frankie is now nearly three and on no medication at all. She eats soya and egg fine now and we are slowly progressing up our paediatrician version of the milk ladder. She can tolerate baked dairy now, and small amounts of chocolate. She has flair ups every now and then, but they tend to present as upset tummies rather than sickness. She hasn’t been sick in over a year and the last time was a tummy bug, not allergy related. Her excema gets bad if she’s having a flair up, antibiotics and ilness can make her allergies worse, but overall she’s making huge progress.
I know you’re in such a hard place right now, but what I’m trying to get across is that there is lots of hope that you will be able to get your baby back to health and you’ll look back on this as a bad dream. Keep fighting for the help she deserves.
xx
Wow
I had the same story with my second child and it’s like gp are not educated in cmpa and reflux.
I have just had my 3rd child and side enough it’s all started again how ever my little girls consultant has seen him straight away and 6 weeks and started on neocate and seeing how this goes before we start the meds…
wish me luck xx
How are you getting on? xx
This is us right now and I’m at my wits end, I just feel so helpless! We are currently on Similac Elecare which I’m assuming is like Neocate, Lansoprazole and Carobel. We trialled a normal anti reflux formula last week and the sickness stopped but she came out in a rash on day 5 with nasal congestion and green poo! Dietician keeps telling me nasal congestion isn’t a symptom but website says it is! Started Elecare on Sunday with Carobel but now we’ve got itchy, red eyes and vomiting!! Now I’ve read this I’ll try no Carobel and see how we get on, really getting me down 😭 thank you for writing this, sometimes you feel like your the only person going through it! Xx
Oh no, I’m so sorry to hear your little one is suffering. Try removing the carobel and see what happens. Have you seen a specialist at all? If so, try and get a follow up appointment, or if not, tell your GP you’d like a referral (or go private if you can afford too as the waiting lists are pretty long on the NHS). You’re not the only one at all, and my heart goes out to you. All I can say is that Frankie is now three and I cannot remember the last time she vomited now that we have it under control. It will get better, I promise xx
Hi. Thanks for your post. We are in the same boat. But ours is silent reflux. So all the symptoms I described but not vomit. After many visits to the GP, PHN, hospital for a day and then a paediatrician, my little fella was diagnosed with SILENT REFLUX & CMPI. He’s only 7weeks old. and was told I have a very irritable, busy, fussy baby. 😫. And will grow out of it. 😫 Any way we are on Neocate, losec liquid and I started adding carobel 2 days ago. He is taking the bottles like a dream and we are getting longer between the night feeds. But he has started to get frequent dark green watery nappies. (Was dark green paste once every 2 days) I’m wondering is carobel affecting the CMPI. 😮. Was going to continue it for 2 weeks as that’s what the paediatrician told me to do when trying something new to give it a chance.
Thanks for all your info in post. Just wondering what you think of the carobel.