In light of seeing her allergist today, I decided to write about her food allergies. One question I get very often is "how did you figure out she had food allergies?" Well, it was a process. This isn't an easy post for me. I don't like to share my daughters pain. But, if helps gain awareness and empathy to others who suffer, then here we go. This will be a long one.The first "reaction" was to baby oat cereal. Juliana was a TERRIBLE sleeper. She woke constantly and screamed and cried a lot at night. So everyone suggested cereal in her bottle. So I tried it a few times. Well one night she began to vomit. And vomit some more and some more. For hours. Then it all just stopped as suddenly as it started, and she was fine. She was about 5 months old so we figured - first tummy bug. But we pulled the cereal because it was not helping with sleep as promised.
I then decided I was done nursing and I wanted to wean her to formula. So we did the similac advance that she had in the NICU as a newborn. But we noticed some red "spots" around her mouth. I thought maybe the bottle was irritating her. But the next feeding the rash appeared on her belly. So doc said try nutrimigen- no rash on her body, until she pooped. She got severe chemical burns with every single poop. Once we stopped Nutrimigen, the rash went away. So we tried soy- same thing. So doc said- either you nurse or we are down to Neocate ($75-$100 per can!!!). She obviously had a dairy allergy (we thought!).
I kept nursing. It was about that time we decided to try feeding her solids - oatmeal to be exact. She ate it and seemed normal, but 2 hours later she was vomiting non-stop. I was driving. Panicking that she would choke. I kept pulling over to help her but trying to get home. She was limp. Gray. And totally out of it. I just nursed her as I knew she needed fluids. I had no idea what happened so I called her doctor. Her doc suggested a possible allergy to oats. She said avoid all grains until further testing.Next we tried eggs, and a rash began around her mouth. A week later, she grabbed an egg off of my plate, and she broke out all over her hand and wherever the egg touch her. So we then added eggs to our list.
Another food she loved was dehydrated apples. We were buying cinnamon apple chips for her as a snack. And the more she ate them, the more flushed she would get. And random hives would pop up.
As I began researching food allergies, I stumbled across Fpies in one of my mom groups. It described Juliana's reaction to oats perfectly. It also talked about poop a lot! She would poop 8-10 times per day as an infant. Runny, mucous poops with whole food, completely Undigested. Fpies can be mild or it can be completely debilitating. Luckily for us, it was mild, and we only react severely to oats and mildly to soy and pears (but avoid rice since it's the most common trigger along with oats). You cannot test for fpies either. It's only diagnosed based on symptoms.
It took several months to figure out all of her allergens. The newest to our list is Zithromax (we think). She had a severe reaction after taking that for an ear infection. We are now petrified of antibiotics. But the allergist told us today there is no way to know if it was Zithromax, it could have been a cross contamination somewhere in public. However, I totally missed the signs of the Zithromax reaction until she broke out. And even still I thought it was a virus until the second break out the next day. Scares me to this day to think what could have happened. I literally watched her on the monitor and told Michael "I'm gonna go lay with her as her breathing looks a little labored". What. The. ??
So our list as it stands today: peanut, eggs, oats, cinnamon (we tested negative to cinnamon today and will trial this at home). We avoid rice and soy and pears. She "outgrew" or never had dairy. We aren't sure what caused the rashes to similac. Allergies are funny that way. One reaction doesn't predict the next, they usually worsen with every exposure, and there is not a standard test that can truly diagnose. Oral challenges are the only way to really know if you are allergic, and you risk going into anaphylactic shock. So for now we avoid the known allergies as best as we can. We helicopter parent at parties where there are these foods present.
This week there has been a lot of "exposure" on the cost of Epi Pen. I will save my thoughts for another long post, but I will leave you with this. One pack for us is $550 (we have insurance, we pay insurance, my daughter needs this to save her life). We, and other allergy parents, spend a lot on groceries. There was a study done recently and it is a proven fact, allergy kids cost a lot more to feed. And finally, my family, and many others, felt it was in the best interest of our daughters life for one us to stay home full time. As an infant and toddler, she doesn't understand her allergies, and most adults don't understand or don't care. Many take offense to the "NO PEANUT" rules. We couldn't risk her life. So we have now cut our income in half. Just keep all of that in mind for my next post.
