Moral of my story- LISTEN TO YOUR MOM-INTUITION- My daughter was just discharged after 5 days in the children’s hospital. On Labor Day she came down with a few spots on her feet, then on the rest of her body within 2 hours. She went to bed and woke up with them even more wide-spread all over.
I can’t explain why I had a feeling initially that it wasn’t HAnd-Foot-and Mouth (HFM), but it was last Tuesday that I had that feeling. I called the pediatricians nurse line who said they don’t see kids with HFM & to treat the symptoms.
Tuesday night I still was uneasy because the spots didn’t match the photos I was seeing of HFM, I called the nurse line again and they said the same thing.
Wednesday morning she was so much worse, lethargic, and the spots had all turned to blisters from head to toe. By 10am I knew this was not normal and demanded for her to be seen. They got us in at 5pm.
Immediately upon walking in, the pediatrician called for two other pediatricians who all agreed we needed to go to the ER. We walked into the ER and were immediately put into isolation 30+ labs done, monitors everywhere. Turns out my daughter had a potentially life threatening reaction to a virus, one of her normal meds, or Tylenol (not sure which) called Stephens Johnson’s Syndrome.
Fast-Forward 5 days, we are headed home now. She is still going to be stuck in isolation at home for infection risk, and her skin is falling off in sheets where she had blisters (25% of her body).
PLEASE if something isn’t settling with you, push push push to have someone look into it. Our story turned out best case, but I hate to think that if I hadn’t pushed for her to be seen how badly it could have turned 😞
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.
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