GOOD MORNING TO ALL,
I am trying to find out more information about TM. My daughter was diagnosed 1 yr. ago with TM at the present time she has alot of physical limitations. As far as any physical therapy, the only thing she can do is go to a pool. We don't know how she got it, we think it was triggered by the 6 spinal sticks the doctor attempted while trying to draw spinal fluid. All I know is she can only walk, sit and stand for very short periods of time. As a mom I keep watching to see if she is going to totally heal. Can someone please help me understand TM. She is also not able to attend school on a regular basis again this year. She will be in the homebound program and is in need of a LAPTOP COMPUTER. If anyone knows of any resources that could help with this, please let me know.
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TRANSVERSE MYELITIS
- By kmb41
- Posted August 5, 2008 at 6:43 am · 2 replies
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- By FuschiaFan
- Posted August 5, 2008 at 9:07 am
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The leading center in the USA for TM is at Johns Hopkins. You can get some information on their website. http://www.hopkinsneuro.org/tm/
There is also a TM association: www.myelitis.org
Many people with TM cannot walk at all, so in some ways your daughter's case is relatively mild. Did she get any rehab? Have you looked into one of the Shriner's SCI Centers for this? Regardless, there is much more than pool therapy she could be doing. Have you explored any of the post-rehab intensive therapy programs.
Why can't she go to regular school? Does she have an IEP? She should not be homebound or required to be home-schooled. She should be mainstreamed into a regular school.
- By kmb41
- Posted August 5, 2008 at 9:55 am
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Thank you for your reply. I am receiving info. from the TM organization.
As far as rehab, the Neurologist or the other too have offered any Rehab. I was the one who came up with the pool since no one was making recommendations to help her.
Please excuse my frustrations with this whole process.
As far as school ,she is not able to sit for 1/2 a day or even a whole day in a chair an due to the physical limitations and the pain that it causes. The school is also recommending Homebound for her and the Neurologist in his notes is saying she needs homebound and yes she has an IEP- she is also Traumatic Brain Injury. The school cannot accomadate her being able to lay down every 45 minutes to ease pain and I am not going to allow her to continue to take muscle relaxers that do nothing but knock her out and then she really can't function.
She is only able to walk for an hour then she has to lay down and it takes sometimes 3 hours for the pain to ease. She cannot run, twist, stand, stoop, jump and other limitations. Th pool is the only physical thing she can do that she doesn't feel the pain and then when in the pool she caanot kick her legs and get too active because then her back locks up and we have to help her out of the pool and then she has to lay down for awhile.
I have been out of work over a year trying to find somone to help Ashley. So, going out of state for help is not financially visible. It is hard being a single parent when there is no other help.
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