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

Hello

Posted by on Aug. 21, 2013 at 4:41 PM
  • 4 Replies

Hello all I'm back!! It has been some time since I have been in here. So for those who don't remember my son Konner had a diagnosis of hereditary spastic paraplegia and possible dystonia. Well since Feb and his seizures starting back up again we have been to several more doctor apts and now he is undiagnosed once again. This time they have no idea what he could have and over this past year whatever this disease is has taken over his upper body now as well. He hasn't grown in a whole year and his head is shrinking. With all these new symptoms this year it is really throwing these doctors for a loop. They have put him in a nation wide database hoping that other doctors are dealing with something similar and can help out. So far no hits yet but we are being hopeful that something will come up soon. Last week he had a growth hormone defiency blood test done and we are waiting patiently for those results to come back. We are suppose to hear on friday the results. If it comes back positive for it then it may be part of the cause of everything, but the doctors are really thinking that they are missing something on his brain/spinal mri's because this disease is clearly neurological but nothing is showing up at all on his mri. We redo both mri's in Oct for a more thorough look. Blood panal is schedule then as well. Tons of apts for this fall for the lil guy to hopefully open up some more answers. Hope everyone else is doing well. 

by on Aug. 21, 2013 at 4:41 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-4):
mandee1503
by Amanda on Aug. 21, 2013 at 4:57 PM
Welcome back. I hope someone is able to help you guys.
RobinChristine
by on Aug. 21, 2013 at 5:08 PM

welcome back,I hope you get some answers soon

darbyakeep45
by Darby on Aug. 22, 2013 at 6:59 AM

Hugs and welcome back mama!

letstalk747
by Joy on Aug. 22, 2013 at 6:00 PM

welcome back , glad you are here

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