I'm sure many of you don't read the comments written by others to Haven's site. But I found this one from Vicki - Leigh Ann's mother - very important. I would like to share this with everyone.
It is good that you have doctors at John Hopkins who are concerned for Haven. A doctor who listens and believes the parents about the symptoms of their ROHHAD child is very important.
The first pediatrician for Leigh Ann would not listen or believe me. I quit him after Leigh Ann returned home in Oct. 1992 from the children's hospital in KY. In Nov. 1992 I changed to an Evansville, IN pediatricain who was located 8 miles from our home. This pediatrician was open-minded and he would listen and believe me.The Evansville, IN pediatricain is the one who diagnosed Leigh Ann with LO-CHS/HD now called ROHHAD in Nov. 1993. He then sent her by air life-flight back to the children's hospital in IN. This children's hospital was 200 miles from our home.
Leigh Ann had been a patient in this hospital several times since Nov. 1992. Also we had made several trips for clinic visits at this children's hospital. But they had failed to diagnose LO-CHS/HD. The Evansville doctor had a very difficult time trying to convince the doctors at the children's hospital that Leigh Ann had LO-CHS/HD.
In Feb. 1994 the doctors wanted to transfer Leign Ann to a rehab hospital that used their doctors. But due to the problems we had experienced at this hospital, I had Leigh Ann transferred to a neurological rehab hospital in Michigan. There were good doctors at the rehab in Michigan who had a better understanding about LO-CHS/HD. Because of the problems with the children's hospital in IN, we started taking Leigh Ann to Vanderbilt in Nashville, TN. The local pediatrician in Evansville, IN asked the help of the Vanderbilt endocrinologist to explain LO-CHS/HD and to assist the other Vanderbilt doctors with understanding LO-CHS/HD.
The Vanderbilt endocrinologist had started Leigh Ann on growth hormone shots just prior to her death. She was treating Leigh Ann for her SIADH problem as well as other endocrine problems related to what is now known as ROHHAD.
All ROHHAD patients need caring doctors. An over-confident doctor who thinks ROHHAD symptoms is only a problem of too many calories can do more damage than good for the child.
There is still more knowledge that needs to be learned about ROHHAD and its treatment. However, it seems to me that at least Haven's doctors are trying and care about her.
Love & Prayers, Vicki