Allergy mums club stories: Sophie, Theo & Jemima

Names:

Sophie, Theo (11) & Jemima (2)

Allergies:

• Cow’s milk protein allergy (CMPA)

Can you tell us about your journey to getting a diagnosis for your children?

My first child Theo was born in 2010, he was exclusively breastfed for the first 3 months. He was very unsettled in those early weeks particularly and I can remember walking the floor with him and not knowing how to comfort him as nothing seemed to help. I could barely hand him over to anyone else for cuddles because he was in such discomfort.

He then became incredibly sicky and used to bring up whole feeds at a time as he got bigger and able to take on more milk. I remember taking him to the GP as I’d heard of reflux in babies, but nobody seemed to take much notice as he was still somehow gaining weight. He and I were just unhappy though as a result.

I explained to one GP how he was very fussy at feeding and I had difficulty getting him to take a full breastfeed due to discomfort. This particular male GP said “oh for goodness sake just give him a bottle”. This was a message that was repeated to me on several occasions by different health care professionals. At about 3 months I did start to introduce formula once a day to see if he fed better, he did take the bottle much easier than when I breastfed him but he also vomited it up just as easily.

Our breastfeeding journey ended at 6 months as Theo decided a bottle was easier and I’d battled to feed him for that length of time and was worn down. Weaning however, was fairly straightforward with Theo and I didn’t see any major reactions. With hindsight he did suffer with eczema but I didn’t make any link with CMPA with him.

It wasn’t until Jemima came along 8 and half years later that I made the link to CMPA for both of them. She was very unsettled and wouldn’t be put down in her crib to sleep on her back at all in the first 8/9 weeks. My partner and I took it in turns to hold her while she slept on us, exhausting. I spoke to a friend who is a GP and we discussed Jemima’s symptoms. Hers were that she was very uncomfortable. She wasn’t sicky and was actually loved breastfeeding. Breastfeeding was going very well. She suggested that CMPA could also be a cause for her discomfort and worth me trying an exclusion and then gradual reintroduction diet to see what may be the cause.

From 6 weeks old I took all dairy, egg and soya from my diet (I am also gluten free myself). After a few weeks I did see an improvement in Jemima. It’s difficult to assess exactly what contributed to that improvement. She was also prescribed renitidine for reflux symptoms too.

We got to about 8 months and weaning on fruit, veg and dairy free substitutes was going well. I slowly and individually introduced all of the other allergens wheat, soya, egg and all went well so I decided to follow the milk ladder and attempt dairy when she was 8/9 months.

Jemima was about 9 months when I gave her half a malted milk biscuit as recommended as part of the first step of the milk ladder. The next day I gave her another, the third day some of a croissants (containing butter). On this day she had a very strange episode where she was almost choking/held her breath for about 10 seconds. It was terrifying. I drove her to the Dr where she assessed her. She suggested it could have been a seizure or could also have been reflux related but couldn’t be sure which one.

The advice was to watch and wait but to delay the milk ladder either way for now. Over the next week Jemima started exhibiting strange symptoms which looked like seizures. We rushed her to Stoke Mandeville Hospital when these symptoms became more exaggerated. The Paediatrician assessed her, took bloods, did an ECG, urine samples etc and all came back normal. They initially wondered if her calcium/magnesium levels were low.

The Paediatricians became more concerned as they witnessed the strange episodes she was having. She was crying with them and in discomfort but we didn’t know what the cause was. She was seen by a Neurologist who said that she believed what Jemima was experiencing was Infantile spasms. She had an MRI scan and further bloods. We were referred to The John Radcliffe in Oxford for Jemima to have an EEG (Electroencephalogram). Little electro magnetic probes were attached via a cap to her head. We were sick with worry as Infantile spasms (from what I had researched and been told by the doctors) was not a good diagnosis.

All of Jemima’s tests came back negative and we were incredibly relieved. We were basically told that the only other option, which had initially been pushed aside due to fears of it being something more sinister, was that she was exhibiting physical displays of discomfort due to reflux.

It is now my belief that the reintroduction of dairy via the milk ladder triggered her reflux and some severe gastrointestinal discomfort which caused her to cry and outstretch her arms (which to the doctors looker like seizures). Over the following few weeks, once back on renitidine and off the dairy, her symptoms gradually reduced and she even started sleeping peacefully again.

I knew her reflux and CMPA caused her discomfort/pain right from the start but when a doctor presents a more serious condition in front of you that they believe it is, it’s very difficult to dispute this. It was a very stressful time but we were so lucky that Jemima came out the other end.

At just over 1 year old I decided to try the milk ladder with Jemima again. I took things even slower this time but she was actually fine. She is now able to eat all of the allergens and is 2.5 years old. Theo has had all of the allergens and been fine from 6 months for us it was the early days ‘allergy wise’ that were problematic.

The weeks and months after having a baby are such a vulnerable time for new mums, and allergies can make this especially challenging. How did your children’s allergies affect this period for you, and what would you say to help other mums in the same position?

What I have taken from my own experience with my two children is to trust my instincts and to not underestimate how much discomfort can present in difficult symptoms. I think unless you’ve been through something similar it’s very difficult to appreciate how distressing it is for the babies and parents. Having a sympathetic GP is a huge help certainly.

It can be really hard to think up meal and snack ideas when you are dealing with allergies, and I’m always interested in what other people are cooking to give me inspiration! What are tour children’s favourite things to eat?

These are a selection of the meals we used a lot, they are all free from dairy, soy and eggs, with gluten free options:

• Baby pea pesto: peas, fresh mint, DF cheese, olive oil with gluten free penne pasta
• Baby dahl: red lentils, coconut milk, water, mustard seeds, garlic, curry leaves, nigella seeds, mashed banana. Served with rice
• Onion & garlic fried in olive oil, herbs, tinned tomatoes, 1 anchovy, cooked broccoli, served with GF penne or tagliatelle
• Chicken stew: leeks, carrots, sweet potato, chicken breasts or boneless thighs, bay leaf, tinned tomatoes, tomato puree, sprouts, broccoli. Fry onions, carrots, sweet potato & chicken, then add the rest of the ingredients. Put in a lidded oven proof dish and cook for over an hour. This can be blitzed to use as a puree.
• Spaghetti bolognese: mince,onions, garlic, tinned tomatoes, herbs, courgettes, mushroom and carrot with GF spaghetti
• Homemade hummus, with carrots, cucumber batons, pepper sticks and bread sticks for dipping
• Fish fingers with peas/carrots/green beans and fries
• Pasta with tinned sweetcorn & tuna
• Seafood spaghetti medley with turmeric, tomatoes, capers & fennel
• And finally a dairy, gluten, egg and soy free breakfast for mums – avocado, smoked salmon, baked beans, GF toast, mushrooms and large coffee!

Make sure to check out the other Allergy Mums Club Stories for more helpful advice and tips. And if you are looking for support with managing your own children’s allergies, have a look at my post all about the free support resources available to help parents and carers x