After discussion, we decided to have them tested. When we needed to get more information on their birth mother's medical condition for the lab, we spoke to the genetic counselor who had the whole birth family information. She was very uncooperative. She said that having diagnoses would not do us any good, there were no cures, and no good would come of it. I was so upset. I told her that knowing was so much better than not knowing. Our kids knew they were different, we knew that there were problems, doctors were drugging our kids, and we didn't know why.
Our kids were finally diagnosed. And, I must tell you, though quite devastating, the news was almost a relief. We at least had a reason for the problems. We could blame something for the problems, and most importantly, we were able to get our kids help! We became very proactive in reducing any stress in their lives. We were able to get appropriate accommodations in the public school system. We were able to qualify for additional medical services, insurance, and regional center services.
This has made a huge difference in our lives. Though we deal with JHD symptoms, and it can be difficult, we also have a reason for the things we deal with. Instead of getting mad at each other, we blame HD. We have found tremendous support from the JHD community. We parents are able to share our problems, and solutions.
My kids are doing pretty well. They are getting services that are making their quality of life much better. If we didn't know what was wrong with them, we cannot imagine where we would be today. Dealing with JHD is hard, but not knowing what we were dealing with would be harder!
We are sad about our diagnoses, but are so glad that we know what we are dealing with. We believe in testing and cannot imagine why, if someone is symptomatic, there are so many roadblocks to get a diagnoses.