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Breastfeeding my allergic baby – Mary’s story

Posted on July 15, 2008
Filed under: Allergy or intolerance to breastmilk, Breastfeeding against medical advice

Cyrus is the second of my three children, born nine years after his big brother. I breastfed my first child with no major problems except some learning-how-to-breastfeed difficulties in the early days and some mastitis later on. While my eldest was small I trained and qualified as a volunteer breastfeeding counsellor so I knew plenty about breastfeeding, and there was no question that I would breastfeed my second baby.

By the time Cyrus came along I had realised that my eldest son had suffered miserably from undiagnosed reflux. He hadn’t been a happy baby and he’d vomited constantly for the first year of his life but reflux wasn’t something I’d heard of back then, much less the link between reflux and allergies. With Cyrus I was better prepared, so I thought. I knew about the link between food allergies/intolerances and atopic disease in infants, so was all set to cut foods out of my diet if he developed reflux like his poor big brother had.

When Cyrus was around three weeks old he developed gastro-oesophageal reflux and began to experience what was later described as “intestinal hurry”. He was exclusively breastfed but didn’t have normal breastfed baby bowel movements. I won’t go into gory detail, but they were odd. He’d also developed an angry rash on his face. I know some babies get a hormonal rash around that time and it goes away after a few weeks, but this was different. It didn’t go away but continued to worsen, and eventualy spread over his entire body.

When I realised little Cyrus had been dealt an atopic constitution I started to limit my diet. I cut out egg, wheat, dairy and nuts but he didn’t seem consistently better. I eliminated so many foods from my diet in the hope of finding the one, or ones that were the trigger for his symptoms to the point where I ended up living on chicken, rice and water. I lost about 30kg (66 pounds) and we were both miserable. Realising that this approach wasn’t working I tried to reintroduce foods into my diet but cutting them out seemed to have made me super-sensitive so that the reintroduced foods made me sick and Cyrus worse. Aaargh!

When Cyrus was five months old an allergy clinic managed to squeeze us in for an appointment. After a three hour drive and a five and a half hour appointment they sent us home with two tins of elemental (protein-free) formula and a gloomy prognosis about his ability to tolerate solid foods in the future. I had told the allergy clinic people repeatedly that I wanted to breastfeed Cyrus and I would do whatever it took, but I don’t think they believed me. They told me that breastfeeding was tiring me out, that sometimes breastmilk is simply not best, that breastfeeding an allergic/intolerant baby is too hard, and that my baby would only get better on the elemental formula. I was feeling very low by the time we got out of there.

My confidence was dashed and I weaned Cyrus onto the elemental formula. A day later I unweaned him. I couldn’t believe that after all my breastfeeding counsellor training and experience I’d allowed the allergy clinic people to convince me that my milk was so bad for him. After all, Cyrus was a good size and weight for his age and was developmentally normal.

In order to stop myself from losing any more weight I drank the formula myself a few times a day. It tasted revolting and for the first week I had to suppress the urge to vomit every time I tasted or even smelled it. I continued to drink it for a few months until my weight had stabilised and I was eating enough to sustain it.

I continued to give Cyrus one small bottle of the formula every day or two so that he would be used to the taste if he did ever need to drink it in the future (e.g. if he was unable tolerate any/much solid food). I’d been scared by stories of older babies and children with major food tolerance problems who had understandably refused to drink the stuff because it tasted so horrid, and ended up with NGTs (nasogastric tubes) because they hadn’t been conditioned to drink elemental formula orally at an early age. It really tasted that bad.

At around seven months a naturopath recommended some treatments which helped Cyrus’s reflux and gut somewhat but did nothing for his painful eczema. He started eating solid food at around ten months. I was too worried about possible adverse reactions to food to start earlier than that and I knew that the formula (which I viewed more as a vitamin supplement than a food) would provide him with any extra nutrients that for some reason may not have been available in my breastmilk. We started very slowly with Cyrus’s food, mainly stewed (or tinned) fruit and oat and rice-based dishes. He appeared to react strongly to dairy (although didn’t show a positive skin test) and a few other things.

By eighteen months he was eating a decent amount of food, although not much variety. Just corn, oats, rice, beef, lamb, chicken, sweet potato, apple and pear. I took him for a follow-up allergy test and the immunologist told me I needed to wean him off the elemental formula and breastmilk onto cow milk, despite the fact that it made Cyrus’s eczema flare up. The immunologist tried to convince me that there was no benefit to breastfeeding Cyrus beyond 6 months and that cows’ milk would be better. What?? I still don’t understand why milk designed for baby cattle would be more beneficial to my child than human breastmilk.

Breastfeeding Cyrus was really hard work. I suffered as much as he did in those early stages of his life, but I am so glad that I didn’t give up. Sure, there are things I could have done differently to make our lives easier but I don’t regret for one second breastfeeding him against medical advice. I believe that continuing to breastfeed Cyrus benefited his immune system in the long term, to the point where now at age three he can eat almost anything and appears (touch wood) to have recovered from his highly allergy-prone state.

Filed under: Allergy or intolerance to breastmilk, Breastfeeding against medical advice

Comments

5 Responses to “Breastfeeding my allergic baby – Mary’s story”

Amanda on May 6th, 2009 3:11 pm

Girl, I admire you for your backbone and determination! I hope your story encourages many other women.
susan on May 7th, 2009 3:23 pm

Keep up the great work!
Khrys on May 13th, 2009 2:24 am

I believe we have to be our own advocate even when professional are telling us differently. Great determination and inspirational story! As a RN I wish you had more support from the medical community.
Strawberry on October 28th, 2009 2:16 pm

Reading that, I wanted to grab you and give you a great big hug! I have been in a similar position: I am still breastfeeding my nearly-three year old, who has 12 food allergies. We had 14 months of absolute misery until we figured out that allergies were the problem, and then I had to restrict my diet as severely as hers in order to keep feeding her. And, believe me, her diet is just CRAZY-restrictive! And yet, at one point, her *allergist* questioned what she was getting from my milk that she couldn’t get from a weaned diet, and he suggested I “just quit”. I was gobsmacked! Of all the people in the world who should know the value of breastfeeding her and be supporting it, it should be him!

I ignored him and carried on feeding her. I firmly believe that my milk has benefited her in ways that none of us are fully aware of, or will really understand for years. She is, in so many ways, a medical disaster (food allergies, environmental allergies, asthma, severely underweight, and we keep having to go to ER because she can’t breathe), but I think she might have been in a much worse state without the tailor-made nutrition that breastmilk has given her.

It takes such strength to stick with it, especially when others are telling you to stop. Good for you for doing what was best for your baby!
Mary on October 28th, 2009 8:17 pm

Thank you all. :)

Strawberry, good on you for sticking with it too. I ended up breastfeeding Cyrus until he was 4 and a bit… I was tandem feeding and can’t remember exactly when he stopped.

I very much hope your daughter improves and you ER visits become a thing of the past. I agree that scientists have only really scratched the surface in their understanding of the properties and benefits of breastmilk. Big cyber-hug to you!! By the way, I LOVE your blog!