Wednesday, October 9, 2013

Having A Child With Food Allergies

Having a child with food allergies is tough. I have held back on writing about this topic because this is so new to our household and I am no expert on it at all. Actually, I am writing about it today hoping to get feedback and some ideas from other moms who have walked this path already.
Since birth, out oldest child, Chloe, has had issues with her respiratory system which has resulted in several hospitalizations due to asthma and pneumonia. We were always told that she would probably outgrow these things and they were likely just caused by environmental triggers. One night, after fighting with her about sitting still for her twice/day nebulizer treatment to prevent her asthma from happening I was talking with my sister-in-law who recommended a book called "What's Eating Your Child?". I read it cover to cover in 2 days and immediately removed milk from Chloe's diet. Within 1 month she was off all medications and didn't have another respiratory issue for a year! Now when I say milk, that is all we removed. We didn't remove cheese, butter, sour cream, etc... We only took away her milk because that is what she was having the most of. She was the kid who would drink 3-4 tall glasses of milk every single day - and more if we would let her.



Her respiratory system has remained under control off all medications with only one asthma exacerbation and one case of pneumonia in 2 years - sweet victory compared to how often we used to be in the doctor even ON meds.

HOWEVER, now we are facing the diagnosis of Eosinophilic Esophagitis which is caused by food and environmental allergies. Basically, Chloe's white blood cells are recognizing the foods she is allergic to as invaders and are attacking her esophagus. This can cause her esophagus to stricture (and eventually need to be dilated), can cause the cells to eventually turn cancerous, and/or can cause pain and severe reflux and vomiting (which she has now). She has tested positively allergic to

  • beef
  • potatoes
  • rice
  • peaches
  • peanuts
We have removed ALL of those things from her diet - which by the way I thought would be easy until I realized that WAY more things have rice flour in them than I ever imagined! We also started her on a steroid spray - Fluticasone - orally twice/day that is supposed to coat the esophagus and start healing it. And she takes an adult dose of Nexium for her pain and severe reflux. BUT...she is STILL not getting better.

So, now we have been instructed to remove ALL dairy from her diet for 7 days. And actually we are on day 9 as I type this. And this is where I need your help. I knew it would take a few days for the dietary change to start working so I didn't get to worked up when she continued to have quite a number of episodes each day, but then she seemed to be getting better having only 1-3 episodes of reflux each day. However, she then went back to having 6-8 episodes with NO change in her diet. No hidden dairy and no missing medications. I am SO frustrated! We were told to begin with that 30% of people who test negative to dairy are actually postively allergic. So my question is...do I keep her off of it when I am not sure if it is making a difference? I am giving it a few more days and then her doctor told us to take her off of all wheat products as she was borderline allergic to wheat. UGH!!!! That is going to be hell for a 6 year old. I really may lose my mind then. How am I going to get a 6 year old to eat gluten free? Of course, I thought the same thing when I told her she couldn't have her beloved cheese anymore...or french fries...or rice cakes...and she has survived and had a great attitude 90% of the time, but it's hard when they see their friends getting to eat whatever they want and she doesn't get to.

I need advice from you other moms who have kids with food allergies. I needs some encouragement. How have you handled it when kids show up to school with cupcakes or cookies for the whole class and you know if your kid eats it they will hurt for the whole next day and roll around in pain? How do you not worry when they aren't with you for meals? UGH! Parenting is SO hard.

No comments: