Traveling Home from St. Augustine, FL. We were driving for 13 or so hours. …
Second Opinions Good or Bad
Second Opinions Good or Bad? When it comes to my health…I ignore 99% of it. The 1%, is usually the kicker. I am down for the count until I can learn to listen to my own body. Problem is, is that I do not have time or energy to listen to my own body because I have about 8 other bodies to be concerned about. All that being said…my health is better because I’m learning how to take care of myself and I’m seeking guidance from our physician….when I’m there for another child 🙂 I’m sure that thrills my dr!
When It Comes to my Child
Then, there is Hunter….diagnosed with
OPSOCLONUS MYOCLONUS SYNDROME Ataxia Telangiectasia Like Disorder. After, almost 2 weeks, in the hospital, last June….this clinical (OMS is clinical and ATLD is a proven genetic diagnosis) diagnosis came. It has been 10 mths and we are not better then when we started. Everyday is a struggle for him. Everyday there is a new thing. Everyday, there is a new challenge.
First Kindness, Then Not So Much
Our Dr was very kind to Hunter…he listened and responded to emails and calls. I felt comfortable that we were a team with the mutual goal of working towards getting Hunter in remission. Lately, however, I feel like it is me doing my thing and he does his thing. I know that he is a good dr and I do not question the diagnosis (so stupid, I should have pushed for genetic testing). I just want more and I want answers. Simply stated, I want to understand. The need for me is that I want it explained to me 1005 times so I will finally get it. I read through 1300 pages of hospital records. In my reading, I took notes, made charts and asked questions of my dr friends. Yet, radio silence on our doctor’s end.
Did I Offend Him?
Somewhere along the line, I must have offended him. Maybe it was when I mentioned getting a second opinion because the last email I received had the words in quotes “OMS experts” (that statement was made assuming this is what he had). I must have ticked him off. That was not my intention. My intention was to get any and all eyes on my son. I believe that someone, somewhere, somehow, at some point read something that may be the key to his remission.
See, the longer he is symptomatic…the more brain damage is being done and that is not acceptable to me. I want to prevent that if I can. I want him to live a life that is full and one that he understands completely. I have 2 kids that have brain damage from FASD because of the choices their birthmother made. It is not my desire to have another child with brain damage as well. To my core, it hurts my heart, to see him struggle to even hold a spoon or put a lego together.
En Route to Second Opinion
I’m set to go visit another dr with Hunter this week. She is about 4.5 hrs away, so it is going to be an unimaginatively long day. We may get nowhere, then again, we might get somewhere. I just want to see what other opinions/options are out there for him.
I hate to hurt feelings during this process….but this is not about me. It is not about our current dr. It is not about this lady we are meeting this week. It is all about Hunter and his future. I will do my best to move heaven and Earth and to get him the help he needs.
Please be in prayer for our trip…that it is safe and fruitful and that we will get some answers.
**Edited to reflect Hunter’s misdiagnosis of OMS and reflected to show his true diagnosis. Ataxia Telangiectasia Like Disorder.**