Tuesday, February 28, 2012

Food Allergies

Another great question that was recently asked in my RS group was whether children with RS have an special feeding restrictions and/or food allergies. Abby has always struggled with feeding. She started life with an NG tube and has always been a difficult eater.

Adding to the difficulty has been her food allergies. The first allergy we became aware of was milk. At around 9 months old we tried yogurt for the first time and within minutes she was swollen, having trouble breathing and rashy. We had her tested and sure enough she has a very severe allergy to cow's milk. Her allergy is not the lactose intolerance type of allergy but the serious, life-threatening variety (like peanuts or shellfish). She cannot eat it OR touch it. If she touches milk her skin blisters like she has been burned.

We began to carry an epipen and were warned to be VERY careful when introducing new foods. When we introduced egg yolks her allergy to eggs became obvious very quickly. Again she was swollen, had difficulty breathing and broke out in blisters. We returned to the allergist and he confirmed eggs as another serious allergy.

About a year later we realized that blueberries were also to be added to her avoid list.

Life without eggs, milk and blueberry was VERY difficult at first. We struggled to find things for her. We wrestled with the fact that our little girl couldn't have mac n' cheese or pancakes. We were afraid to leave her with anyone for fear they might miss an ingredient in a food. It was downright scary. Over time we got much better. We learned to cook and bake *almost* everything vegan (we're still working on a good vegan donut recipe). Our family became much better at understanding what she could and couldn't eat. It got a lot easier.

No one knows whether the food allergies are related to the RS or if they are coincidental. Her allergist had never even heard of rhombencephalosynapsis before Abby so he didn't venture a guess. We really have no idea. We just pray that over time she MIGHT outgrow some of her allergies. Each year that passes it looks less and less likely (as her blood test numbers don't budge). But... you just never know.


  1. Hi Kristen, I would like to know what the RS Forum it is that you are a member of. My daughter was diagnosed with RS. Can you post it on here and I can get it? We have been reading about Abby for a two months now. My daughter pulls it up daily to see if there is a new post that has come in.

    Look forward to talking to you. We have alot in common. :)

  2. I found the forum site on your website. I registered, just waiting for them to accept it. There isn't anyone on there???

  3. No one is there anymore. :D We've moved to Facebook. The new world I guess! If you search rhombencephalosynapsis on FB you should find us. Just request to join. If you have any problems shoot me an e-mail (piglet5432 at gmail dot com).