I know some were wondering what our decision was on Chicago and at this time we have decided it is not the time to go.
I am aware that the doctors there are researching to find a gene linking a child to ROHHAD Syndrome. This requires us to take the PHOX2B blood test (costing $400 - which insurance doesn't pay) and have that sent to Chicago. Once they screen the blood we would then have to go there for a week of extensive testing. I don't even believe Haven could perform all the tests - she gets too worn out. They would also do a week long sleep study.
Maybe it would benefit everyone later - but it has no benefit to Haven now. It wouldn't change her current treatment that Johns Hopkins is doing. Especially since there is no treatment or cure for ROHHAD. Insurance also does not cover us going to Chicago for this testing - and with the testing costing around $150,000 (estimated).
So for now we will skip out on Chicago and continue to keep in close contact with all of our doctors here.
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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...
My sister has ROHHAD syndrome... I found this site via google because I am writing a 15 page paper over this syndrome for a college course. My sister just turned 18 years old last month. She had all of this blood testing done I believe. They sent it to Great Britain and they found no genetic link but I believe that was several years ago. I wish you all the best
ReplyDeleteIt'a shame what insurances do in the U.S.A.. It's unbelievable.
ReplyDeleteI hug so strong Haven.
Fabio from Italy.