shellyd67
Active Member
Gosh, I haven't really posted about difficult child in so long. But a quick update, he is doing very well on his new medication Vyvanse. He is growing up and maturing and I am quite proud of him right now (lol).
Anyhow, on to my story. easy child was diagnosed with a very rare orthopedic disorder back at the end of June so our days and nights are just filled up with treatments and trying to get her to make an full recovery.
You see, she has lost some range of motion in her hip and may never gain it back, infact it may even get worse ? But we no NOTHING about this disease. Their is so darn little info on it.
While my emotions were clouding my judgement, I reached out on this forum and many of you gave me some great advice and SERIOUSLY just summed everthing up for me and put me on the right track of who to reach out to what hospital specialized in orthopedic disorders, etc. She was even kind enough to post the link for me.
I reached out to a Dr. I found on the internet who participated in a clinical drug trial that treats easy child's disease. She contacted me in less than a week from my intial letter, and told me she was a student at Brown University at the time of the study and she really is that much of an expert on it but contacted the Professor/Ortho Specialist who headed the study and gave him a copy of my letter and informed me he is waiting to hear from me.
I have a new found faith ! I have had so many people tell me not to get my hopes up, that Dr's are sued so often these days that she will not respond. WELL SHE DID ! She couldn't help me but she know someone who is willing to help my easy child. Her letter was just so sweet and she wished easy child well and informed us how the Dr. I am now reaching out to has made some ground breaking discoveries in Orthopedic disorders.
I look more than forward to hear back from him.
Just wanted to share some possible good news for a change.
Anyhow, on to my story. easy child was diagnosed with a very rare orthopedic disorder back at the end of June so our days and nights are just filled up with treatments and trying to get her to make an full recovery.
You see, she has lost some range of motion in her hip and may never gain it back, infact it may even get worse ? But we no NOTHING about this disease. Their is so darn little info on it.
While my emotions were clouding my judgement, I reached out on this forum and many of you gave me some great advice and SERIOUSLY just summed everthing up for me and put me on the right track of who to reach out to what hospital specialized in orthopedic disorders, etc. She was even kind enough to post the link for me.
I reached out to a Dr. I found on the internet who participated in a clinical drug trial that treats easy child's disease. She contacted me in less than a week from my intial letter, and told me she was a student at Brown University at the time of the study and she really is that much of an expert on it but contacted the Professor/Ortho Specialist who headed the study and gave him a copy of my letter and informed me he is waiting to hear from me.
I have a new found faith ! I have had so many people tell me not to get my hopes up, that Dr's are sued so often these days that she will not respond. WELL SHE DID ! She couldn't help me but she know someone who is willing to help my easy child. Her letter was just so sweet and she wished easy child well and informed us how the Dr. I am now reaching out to has made some ground breaking discoveries in Orthopedic disorders.
I look more than forward to hear back from him.
Just wanted to share some possible good news for a change.
