Wednesday, 6 February 2019

What happens when CMPA symptoms don't disappear with a dairy free diet?

Three months ago Matilda transitioned from dairy free bottle feeding to an amino-acid based formula and we also began our weaning journey. From day one, she began to wheeze briefly after her bottles, which at the beginning we put down to her just adjusting from breastfeeding to the fast flow of a bottle, but when it continued after a period of time, I began to worry.

This wheezing also occurred after eating some foods, but I just could not determine if it was one particular food setting this off or something else as it did not happen consistently when she ate.

Matilda was also screaming in pain with every bowel movement. It was the same ear piercing scream we experienced early on after she was born, before we discovered her CMPA.

Another symptom that caused me great concern was after feeding Matilda a homemade dairy free tomato and spinach frittata, she developed a rash across her face. It was the first time she had eaten both egg and tomatoes, so one of those must have triggered it.

All of this together gave me the following concerns:
1. Is Matilda allergic to the Neocate formula? She had already had a reaction to the Nutramigen,   could it be happening again? If so, what options do we have left?
2. Does Matilda have other food allergies than just cow milk protein?

So I rang out Paediatric Dietitian's office and left a message with her assistant relaying the issues and concerns we were having. Yesterday, just over a week later, she returned my call.

Firstly, we discuss the concerns over the wheezing after her bottles as well as sometimes after eating. She seemed concerned but reassured me that it could not be the Neocate formula causing this. My dietitian claimed that the chances of a child being allergic to the Neocate are extremely rare and that Neocate was really the last resort option for formula feeding Matilda. Instead she explained to me that sometimes after children with CMPA allergies omit dairy from their diet, they can still experience symptoms and may need referred on to a Paediatric Gastroenterologist. She urged me to make an appointment with my GP and get Matilda checked over and discuss the possibility of a referral.

We then discussed the rash Matilda developed after eating the frittata and both agreed it was most likely the egg that caused the rash. My dietitian urged me to be brave and try Matilda again with egg but have it baked in something and see how she tolerates it. If Matilda reacts again, I need to inform her right away and she would make a referral to the allergy clinic for testing.

Later that day, I took Matilda to see our GP to discuss what the dietitian had said. I had my larger than life three year old with me at the time which if you have ever tried to have any important discussion with a three year old around, you will know how challenging it is. I packed a box of snacks, including a chocolate reindeer he had left over from Christmas for bribery and set off on our short walk to our local doctors' surgery. We were half way there when my darling three year old screams 'I need a poo.' I should know by now this always happens at the most inconvenient of times, so we rushed back home, did his business and set off again. Luckily, I am obsessed with time keeping and had allowed half an hour for a ten minute walk.

I felt a massive sense of relief when I walked into the duty doctors office and saw which doctor it was. We have meet with this doctor before regarding Matilda's allergy and he was brilliant, some of the other doctors unfortunately were not always as supportive and knowledgeable as he was, but today we were in luck. My dietitian had already sent him an instant message detailing what we had discussed during our earlier phone call which made life so much easier. While my three year old worked his way through his bribery stash, we discussed my concerns and he examined Matilda and was in agreement with our dietitian. Egg was to be removed from our diet and to gradually try and challenge her with foods that had egg baked in them. The wheezing he concluded was done to silent reflux, making it hard for her to catch her breath sometimes while eating and drinking, and the painful bowel movements he put down to colic. We were the prescribed Ranitidine to be taken twice a day to relieve these symptoms but if nothing improved, we had to return and would be referred to the Paediatric Gastroenterologist. 

Just when I thought we were getting into the swing of things with the dairy free diet, we are thrown a curveball. We will follow the medical advice and proceed with what was proposed. Fingers crossed it all works out...

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