Posted by admin | Posted in Mommyhood, hypotonia | Posted on 23-10-2009
Tags: dystrophies, gross motor skills, hypotonia, MRI, muscle biopsy, myopathy, neurologist, physical therapy, white matter
We went for our second follow-up with the neurologist this week. I swear, their follow-ups are how they make a profit. We actually saw the neurologist this time instead of the nurse. He didn’t have any new information for us, of course.
The doctor told us that he wants to repeat the brain MRI in one year even though it came back “normal”. He said that Luke’s white matter isn’t as broad as it should be. He said this could be a “chicken or the egg” dilemma though. Since Luke’s gross motor skills aren’t where they should be for his age, his white matter is going to reflect that. I’m guessing that if you compared Luke’s MRI to one of a normally developing 9 or 10 month old, the white matter would be similar. I am really on the fence about repeating it for a few reasons. I don’t want Luke to have to go through the traumatic experience again. It was also disturbing to us as parents to see him scared, then 2 seconds later go completely limp from the anesthesia. Another thing to consider is the fact that we will have to pay out another $1000 deductible. I would definitely not think twice about paying out the money if I knew for certain that the procedure was critical for more answers. We are going to wait and see what happens. As long as Luke is continuing to make progress with his physical therapy, then we are going to hold off.
The neurologist also said there are a few other tests to perform that weren’t already done with the bloodwork that Luke had done while he was under. There are 2 blood tests that check for other kinds of dystrophies. They can also do a muscle biopsy to check for other genetic muscle conditions. There are no cures or treatments other than physical therapy for any of these outcomes. Again, we are going to wait another 6 months to do any additional blood tests or biopsies.
I also asked the doc if he had patients in the past with hypotonia who had all of the testing done, but found no cause. He said “yes”. Well, that doesn’t really make me want to do them either.
Does anyone out there have any experience with all of these crazy tests? I feel like my son is a pin cushion and a guinea pig! I just want to leave the poor boy alone for awhile and let him have fun. Maybe then he will feel more compelled to be “normal”!!!
“It was also disturbing to us as parents to see him scared, then 2 seconds later go completely limp from the anesthesia.”
I don’t have any experience with any of the more intensive testing, but I know that I would be hesitant to have to do the MRI again too! And we don’t even have to pay anything for it. It is a difficult thing to experience.
Sorry T, I read your post a cpl days ago, but Kaia is really sick again & haven’t had a chance to catch up on comments & emails!
Firstly, Yay pictures! They are very cute. I like your cryptic photos, keeps me always guessing!
That is scary! I’m so sorry Luke (& you as parents) have to go through that.
You are very wise to question. You know K’s history, & all the medical testing & poking & prodding he had & still has ocasionally now. I know so much of it was necessessary in his first year, but, it got the point where he was having so many tests & being carted round all over the place meeting strange Drs, & getting scared & stressed.
Eventually I came to the same conclusion as you & said enough!
I question the same things you are. Can the test give you any answers or help the direction we move in in any way? Do the benefits of the tests outweigh the discomfort they’ll go through?
It’s such a hard decision, the guilt that you may possibly miss something if you don’t do the test, & the guilt of forcing your child into something that may not be necessary if you do.
I guess, just try to get as educated as you can by getting other medical opinions, & talking to anyone else you may know in the situation, but most of all trust your mummy instinct.
Good luck, thinking of you! x
i been living the same, my son will get his second mri soon and is not even a year old… and it will be his third time with full anesthesia. i also wonder, but i trust to be in good hands (miami children’s hospital), so in his name I gather myself up, and do it.
Most of the time I can see how greatfull he is. He knows we are trying hard to improve his conditions as much as we can. But I completely agree with trusting your instincts.