I feel like LIFE just gets in the way. I have all these plans to post and be able to come back here in 20 years and remind myself of what I've been able to get through! What major obstacles I've been able to overcome!
BOSTON: Well we made another trip out to Boston. This time to see Rheumatology, Motility, and Dermatology. Rheumatology determined that she's good to go for now, but if any symptoms or signs pop up, she needs to return YAY!!! Dermatology diagnosed her with Rosacea. Since the cream they gave us is currently working, we're okay to stick with it. If there's a point that it stops working, they will switch her over to an oral medication as well.
Motility. While I do like the doctors and think they're nice, I am beyond frustrated. They are trying to tell us that her being so constipated that she needs to be hospitalized every 6 weeks is behavioral. That her need for Miralax, dulcolax, colace, and senna, and we still get pebbles is behavioral. I, as a mom, am NOT accepting that as an answer. I expressed my frustrations with her GI here, who also agreed with me that she wanted to rule out everything here first. She will also be conversing with a GI at Columbia University to see what her thoughts are.
Every day I am learning something new about the food industry. Today, from a fellow (and veteran) FPIES mamma I learned of a reason why we may have failed raisins but passed grapes a year ago. Turns out... RAISINS are OFTEN made using SUNFLOWER OIL! We are acute to sunflower oil! Who knew!
Hi there! I'm Caitlyn. I'm mom to three kiddos ages 7,5 & 2. My 7& 2 year olds were the two blessed with FPIES. My 7 year old is only (now) Acute to dairy, wheat, soy, and rice. The youngest is a hot mess with 12 safes, and a million fails plus a few IGE's to top it all off.
We appreciate your support!
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