Allergy Stories: Grace who has 2 sons with CMPA

For the first allergy story of 2016 I spoke to a friend of mine Grace who has 2 sons with CMPA (cow’s milk protein allergy). Interestingly they had different symptoms to start with so it wasn’t much easier to diagnose her younger son when he started showing symptoms. 

Thanks Grace for taking the time to do this interview. ​​What age are your boys and what food allergy do they have?

Tadhg is almost 4 and Rune is 18 months. The both have CMPA.

How did the symptoms of CMPA present themselves and was it the same for both boys? 

Both boys presented differently. Tadhg’s symptoms were more unusual. When he was born he was a very gassy baby. He expelled gas very frequently and loudly! In the hospital when he was born he had far more bowel movements than the other babies. When he was about 2 months old he began to pass mucus during his bowel movements and then began passing mucus with some blood in it. At this point we brought him to Crumlin and he was tested for Lactose Intolerance. He was diagnosed with it and I was advised to end breastfeeding and feed him Nutramagin, a lactose-free formula. He improved for a few days but then became worse than ever. His bowel movements seemed very acidic and he had very raw and painful nappy rash, and his bowel movements had a very strong cheesy smell. He then had an appointment with a Paediatrician and he was put on Neocate formula, in which the proteins are broken down into amino acids so that the body doesn’t react. This thankfully worked and he thrived thereafter.

Rune was in constant pain with his allergy. He fed constantly and therefore his system had no break from the milk. He would wet through nappies in minutes and have bowel movements every hour at least. He would wake from sleep every seven minutes and his cry suggested he was in pain. We had been advised that he would likely be CMPA by doctors so we were alert to it, however making the decision to stop breastfeeding your child is not one you make without just cause. So Rune was one month when we switched to the Neocate, when we were certain there were no other options. He too had severe nappy rash and his bowel movements began to get the cheesy smell also. At that point we switched him to Neocate and within hours his pain was reduced.

How did you find the process of getting a diagnosis? Did you find it easier to get a diagnosis for Rune as his brother had also had CMPA and you had the experience and the family history?

Getting a diagnosis for a newborn baby with no specific family history of the allergy was not easy, to say the least. There was such a delay in getting results for the Lactose Intolerance test via the GP so we had to go to the emergency room in Crumlin. They were amazing and diagnosed him in an hour. Getting an appointment with a paediatrician when the first formula didn’t work was difficult and drawn-out. The paediatrician prescribed Neocate formula suggesting that it might be CMPA. He suggested that this was the only option and if that didn’t work that there was nothing else to be done. 

Technically I guess that this means neither of the boys were ever actually given a diagnosis by any doctor…that really speaks volumes about the experience of the children who suffer from these allergies and their parents. I constantly was asked if I thought my child was unwell, out of sorts etc etc. I felt nobody wanted to take responsibility for giving a professional medical assessment of my baby.

With the second diagnosis it was a case of me telling the doctor that Rune was also CMPA and that we needed a prescription for him.
 
Did you have good support from your GP/allergist?

The GP was very supportive and facilitated us at all times.

Are your boys in childcare​ or school​? How did you find leaving them with someone else and trusting them to look after their allergies?

Both are home with me but Tadhg has spent time in preschool. It is difficult to explain his allergy to others, people find it hard to understand that they cannot have anything with any type of milk. 

Has it been difficult to put the boys​ on a dairy-free diet?

It is hard to have your children on a dairy-free diet. Eating out is particularly difficult, there is so little choice available. Coming up with things to have as a pack-lunch and snacks is also tough. Eating with some friends can be difficult as your children are excluded from certain snacks and treats.

Do you find your family and friends understanding?

For the most part our family and close friends are very understanding. For grandparents it can be hard to understand what is and is not allowed. Four years in and I think everyone gets it now. Thankfully many of our friends eat limited amounts of dairy so they are more aware of alternatives.

How do you find eating out with a child with allergies?

Eating out is so difficult. Eating something healthy out is almost impossible. Some places have the ingredients numbered which makes things a bit easier but that is still the minority of places.

Did you and your family go free from dairy also? 

Yes we are almost completely dairy free. My husband eats normal butter and I eat soda bread but apart from that we are dairy-free.

Is there any indication of your boys growing out of CMPA, have you been advised to do milk trials with them?

We were advised to do trials and we have done them. There is no sign of them growing out of the allergy. Tadhg can tolerate a small amount now and again, he gets one slice of soda bread a week. To him this is such a special treat, that is pretty amazing to me! Rune cannot tolerate any dairy.

I believe there is also a very unusual member of your family who is dairy-free? 

Yes! We fostered a cat and her 3 kittens a couple of years ago. One kitten failed to thrive in spite of hand feeding and feeding with her mother. She was constipated and a fraction of the size of her siblings. She was put on a few different kitten formulas and there was no improvement. Being an allergy mama I saw things in a different light and I tried feeding her on Tadhg’s Neocate formula. Within hours she began to grow and have regular bowel movements!! She is now a healthy cat and of course we adopted her after that serendipitous meeting! 

Grace with Tadhg and Rune
Grace with Tadhg and Rune
Thanks again Grace for taking time to answer these questions. I can definitely relate to many of the issues you’ve had surrounding getting a diagnosis and having two children with CMPA both with different symptoms. What you say about nobody wanting to take responsibility for the diagnosis of your baby or that you still have no official diagnosis rings so true here too. Hopefully by sharing your story you will help other people who are in a similar situation. Thanks again for your time and best of luck with your two beautiful boys! 
 

Would you like to take part in an allergy story for dairy free kids? Drop me a comment before or an e-mail laura at dairyfreekids.ie if so. 

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