Haven is scheduled to go back in to the hospital on the 8th Floor isolation area October 16th.
Friday Kris and I had a 2 1/2 hour meeting with her doctor and discussed previous treatments and the new suggested treatment. I learned more about molecular biology and cell division than I ever learned in school....and I actually understood it better when he described it.
The Hi CY only attacks cells that divide....leaving immune cells in the system that don't divide. This next treatment is to attack the cells the don't divide and see where that gets us. We have high hopes and considering we don't know what happens with ROHHAD and the chance of something being irreversible we signed without hesitation.
Our main concerns, which the doctor pretty much said Haven is guaranteed to have is:
High blood pressure - she will be monitored and most likely go back on medication due to the fact that she borders on hypertension now.
Diabetes - she will most likely become diabetic during this treatment and they will monitor her closely and she will most likely need insulin injections. This should only be temporary and go away after a while.
My concern is that 1. we've had High BP for 2 years and just got off the meds and 2. ROHHAD has a way of developing diabetes without the help of a chemical that makes you diabetic.
We'll keep everyone updated - as for now she has 2 weeks off from the doctors and I'm sure she is going to enjoy not driving to Baltimore!
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
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