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In tears- neuro thinks Carter COULD have muscular dystrophy
I'm beyond upset and not sure where to go. We've got several tests coming up (sedated MRI, sedated EEG, blood tests, DNA tests) and so we will know for sure within the next two months (that's how long it takes to get all the tests back). I googled of course and I've been sitting here crying for a good 10 minutes. Here are the complications:
- Cardiomyopathy
- Decreased ability to care for self
- Decreased mobility
- Joint contractures
- Mental impairment (varies)
- Respiratory failure
- Scoliosis
This discussion has been closed.
Re: In tears- neuro thinks Carter COULD have muscular dystrophy
I'm so sorry. I hope you get good news!?
Oh Jennie, I am SO sorry you have to have all this stress on your shoulders right now.
Please, though, do NOT google!
(hugs)
::HUGS::
First, stop the Googling!!! Google is not your friend! Particularly when it comes to stuff like this, and when it involves your children.
I should talk, of course. I did that constantly after we first brought Miles home, and destroyed myself thinking about all the possible complications and what-ifs, etc. But really it does you no good.
Crossing my fingers for you and Carter that everything turns out OK. I can somewhat relate to what you're going through if you ever want to talk/vent. You are a strong woman and wonderful mother. Hang in there. Everything will be OK.
Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
((hugs))
I'll be thinking about and praying for you and your little guy.
Ryan 5/2010, Kyle 1/2007, Eric 3/2005
I am so sorry for this stress in your life, I will be thinking of you and hoping for good news.
Put the Google down. Seriously. It will not help you right now.
Alex (11/14/06) and Nate (5/25/10)
"Want what you have, do what you can, be who you are." - Rev. Forrest Church
Big HUGS. I sort of know what you're going through (we are having to take Ben to all sorts of neurology and nuerosurgery appointments right now, and some very scary potential diagnoses have been thrown out) and I cannot stress enough that Google is absolutely not your friend in this situation. Please, please try to stay off it (I should talk, but try) until you know what you're dealing with for certain, and even if it does turn out that he has MD, try to listen to your doctors and the experts and keep from obsessing online. Just remember, even if you get bad news, Carter will still be the same amazing little boy that he was before you had that "label."
Lots of hugs and prayers.