I finally got him into an allergist today and we have a PLAN OF ACTION!! YAY!
First off, look what my poor baby had to go through today. I felt so bad for him.
It was awful getting him pricked 17 times, but we learned what he is NOT allergic to, so that was very helpful.
Basically, when you think of a typical food allergy it is what is called an IgE reaction. This usually involves rashes, wheezing, throat closing, etc. The allergist wanted to rule out the possibility to any IgE reactions in him. We tested him for a whole bunch of things and everything was negative, which is consistent with FPIES. The testing always comes back negative unless they also have allergies in addition to the FPIES. So, we got the OK to try eggs, and corn, and continue with wheat. Those three things alone will open a whole bunch of possibilities in Kyle's diet. YAY!
However, since he does have FPIES, he will have to stay away from rice and oats for sure until he is 2. The doctor thinks he may have grown out of the dairy and soy allergies, so he wants to trial giving those to him in his office. This will involve me hanging out in a doctor's office for at least 6 hours to make sure there is no reaction to milk or soy, and most likely hooking up to an IV so that if there is a reaction he does not go into shock which can be typical of an FPIES kid. We are going to schedule doing the dairy trial ASAP.
I'm already dreaming about eating dairy again....yes, I'm still nursing!!
Kyle is also seeing a speech pathologist for his gagging issues. We still have a long road ahead of us to get him to swallow without vomiting, but with these new foods we've gotten the OK on, I'm actually a little more excited to see him eat...and most importantly to see him grow!! He hasn't grown since about 9 months old, so we've been super worried. But, today, I'm feeling a little more positive.
(I'm a knucklehead...didn't know I could post on here. Clearly this is my first time posting on a blog!)
ReplyDeleteHi,
My name is Beth and my son Charlie who is 6 months old was just diagnosed with FPIES this past Monday. Even though it's only been 4 days since he was diagnosed, I feel like my head is spinning in so many directions with all that I have read on it and at the end of each day I still am left with this big question mark since Charlie is an individual in this….also, there are some pretty horrible stories out there!
I just wanted to thank you for your funny blog...it's the only thing I have read so far on FPIES that sounds like Charlie and isn't freaking me out. I am nursing right now and am considering giving it up even though that is the last thing I want to do, but your humor towards the foods and giving up soy and dairy has been great to read and I’m making a grocery list while reading too. The reason I am changing my diet or giving up nursing is because Charlie still wakes up almost every 2 hrs to nurse (which I now think is for comfort when he isn’t feeling good instead of being hungry), he is on Zantec for spitting up (which I want to take him off of) and he sleeps in a little ball at night which I heard is a sign that he is in pain. I am not looking forward to introducing Charlie to his first food again this weekend (he's gotten very sick on oatmeal and that is all we have given him so far), so wish us luck with the apples.
How is Kyle feeling these days?
Thank you again for creating your blog. I’m not fully done (I’m at the Wholefoods visit and you finding a bunch of non-soy foods to eat), but I just wanted to let you know that you really are helping me start this scary journey with a smile on my face.
Take care,
Beth Beach