I just lost my 5 year old baby girl a couple of months ago from PLE. She was treated at Purdue University Hospital. Was in ICU for 3 days, and lots and lots of medicine.
My understanding is their body doesn't process the protein.
It was all a nightmare for me that ended with us losing her.
There was no surgery options, but they did do a biopsy. PLE can have more than one cause and cancer was one of them so they had to rule it out. Hers was caused from IBD (irritable bowel disease).
I have questioned myself over and over if I missed something, but the truth is she had had diarrhea a few times that always resolved. The last time it just didn't get better, and then she started having the fluid in the belly.
Mine WOULD NOT eat the special food. We hand fed her just to get a few bites in her.
I did everything I could do to get her well, but she just didn't. Good luck, some of them eat the restricted diet and live well.
If I can answer any question, let me know. |