Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Raising Special Needs Kids Raising Special Needs Kids

More waiting and uncertainty

Posted by on Mar. 29, 2014 at 8:26 AM
  • 15 Replies
So after having to reschedule Kendall's neuro appt from January we finally got in. We saw a different neuro than Cody saw. He was nice enough and very patient. He said right now she's not showing any signs physically, which is totally possible, but with that being said he can't justify the expense of genetic testing to confirm or deny whether or not she has it. So he said he would set us up with Shriners and hopefully they will be able to help. So basically we've made no progress. :(( the not knowing kills me. The range in physical symptoms is huge! It can go from very minimal to greatly debilitating. We may have to wait a few years so she can undergo the emg testing :(( I just hope eventually we are able to know for sure one way or the other.

Sorry for the rambling but you ladies are the only ones who get it.
by on Mar. 29, 2014 at 8:26 AM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-10):
mandee1503
by Amanda on Mar. 29, 2014 at 10:47 AM
*hugs* I hate the waiting game too.
Cindy18
by Gold Member on Mar. 29, 2014 at 11:04 AM

Please remind me what you suspect she has?

Hugs!


Codysmom2106
by Bronze Member on Mar. 29, 2014 at 11:14 AM


Quoting Cindy18:

Please remind me what you suspect she has?

Hugs!

Charcot Marie tooth type 1a aka cmt...it's a heredity progressive neuromuscular disorder that affects everything from hands to feet. Her dad and brother both have it. 

Cindy18
by Gold Member on Mar. 29, 2014 at 11:28 AM
1 mom liked this

Thanks. If the dad and brother have it, I would think that would be enough of reason to do the gentic testing. 

Good Luck, Momma.

Quoting Codysmom2106:


Quoting Cindy18:

Please remind me what you suspect she has?

Hugs!

Charcot Marie tooth type 1a aka cmt...it's a heredity progressive neuromuscular disorder that affects everything from hands to feet. Her dad and brother both have it. 


Codysmom2106
by Bronze Member on Mar. 29, 2014 at 11:30 AM
1 mom liked this

You would think. :( thank you

Quoting Cindy18:

Thanks. If the dad and brother have it, I would think that would be enough of reason to do the gentic testing. 

Good Luck, Momma.

Quoting Codysmom2106:


Quoting Cindy18:

Please remind me what you suspect she has?

Hugs!

Charcot Marie tooth type 1a aka cmt...it's a heredity progressive neuromuscular disorder that affects everything from hands to feet. Her dad and brother both have it. 


jjamom
by Michele on Mar. 29, 2014 at 12:57 PM
1 mom liked this
Does early intervention help slow the progression? If so, I would think maybe you could appeal on that basis, i.e. that it would be beneficial to know as soon as possible so that therapy can start at the earliest.
darbyakeep45
by Darby on Mar. 29, 2014 at 3:03 PM

Hugs mama!

Momof4AEMW
by Gold Member on Mar. 29, 2014 at 3:17 PM

I'm sorry.  I so wish they would have pushed to give you answers.   

Codysmom2106
by Bronze Member on Mar. 29, 2014 at 4:09 PM

That was my hope. A diagnosis would have opened the door for earlier therapy. The only thing that helps is cody being in therapy now. We can try and do some of the smaller stretches and exercises with her that we do with him. She just won't get private therapy. 

Quoting jjamom: Does early intervention help slow the progression? If so, I would think maybe you could appeal on that basis, i.e. that it would be beneficial to know as soon as possible so that therapy can start at the earliest.


Codysmom2106
by Bronze Member on Mar. 29, 2014 at 4:10 PM

Thank you. I wish they would have too. 

Quoting Momof4AEMW:

I'm sorry.  I so wish they would have pushed to give you answers.   


Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

close Join now to connect to
other members!
Connect with Facebook or Sign Up Using Email

Already Joined? LOG IN