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.
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.