Matisse Reid Plagued by Headaches During Transplant Recovery
Pain could be side effects of many drugs she is prescribed, mother says.
Matisse Reid has been plagued with headaches and belly aches since receiving a small bowel and large bowel transplant at Children's Hospital of Pittsburgh of UPMC.
"Finally realizing this was more than just a headache, I asked the transplant fellow to do something about it. It is really hard because Matisse has had massive amounts of anti-rejection medication in a short period of time and is on steroids and her regular immune suppressant, which can all give her headaches. But 8 hours of no break is not good, plus she has to have the room really dark and feels really sick."
Once the doctor prescribed a "migraine cocktail," Matisse finally was able to sleep, her mother reported."
Matisse, a fourth grader at Eden Hall Upper Elementary, has a rare disease, chronic intestinal pseudo obstruction, that has prevented her from digesting food since she was born on Christmas Day 2000.
Wayne and Jodee Reid moved Matisse and her three siblings to Gibsonia four years ago from their native New Zealand to be closer to Children's Hospital of Pittsburgh of UPMC.
She received the small bowel and large bowel during transplant surgery on Dec. 7 and has been at the hospital since then. Her parents take turns staying with her so she is never alone.
"Matisse feels really nauseous -- too sick to eat or even tolerate the smell of food," Jodee wrote in the journal. "She is not being naughty with food; if she felt good I have no doubt she would eat.
"She has lived for the day when she could eat anything she wants and I know all the medication is making her feel so bad. I have no doubt once the thymo (Thymoglobulin®) and OKT3 are out of her system and once the docs keep her Prograf® at a normal level she will eating us out of house and home." All three drugs are used to fight rejection of transplanted organs.
"Matisse had her second dose of bortezomib (to fight rejection) today -- that could be giving her migraines. Who knows? I think it is a side effect of everything that she is on."
Jodee has chronicled the many drugs that Matisse has taken – some worked, some did not – in her journal.
"At this point we just want Matisse back. This is not her -- this is all the medication to keep her new organs from (being rejected) and her belly from aching. Poor baby. (She is) enduring more than most of us could possibly imagine."
A special replenishment blood drive to support Matisse, who received blood from the Central Blood Bank during her recovery, is scheduled for Jan. 5. The drive will be held from 1 to 7 p.m. at Matisse's school, Eden Hall Upper Elementary, at 3900 Bakerstown Road, Gibsonia. For details, click here.