2 Years Old with Spinal Cord Surgery

[gracemom]

Hi everyone,
My daughter Grace had a spinal cord tumor surgery 5 months ago at 22 months old.  It was a benign tumor. There's still some leftover because it was too dangerous to remove all of it (upper back spinal cord).  She's too young to have to go through all this, and it has been killing me in the last 6 months caring for her.  WE NEED YOUR HELP, I NEED YOUR HELP!  It's been 5 months since the surgery and her legs, her hips, and her motor skills are still weak.  She can't run or jump or straight her back yet (she was able to run before surgery).  What's killing me is that she can't straight her back while walking even after 3-4 months of physical therapy.  She's hunching over like a 99 years old woman (her head is sinking to her shoulders and bending to her left side).  Just imagine a 99 years old woman walking with head sinking to shoulders and back bend a little bit.  What else can I do for her?  I would do anything to help her be back to normal again.  I have been taking her to the children gym 2-3 times/week, once a week to physical therapy, play at the park.  I also have been giving her daily epsom salt bath as her shoulders & muscles are very tight.  I have been massaging her back everyday with olive oil.  Any parents out there with kids who have spinal cord surgery? 

[BC]

Hi, I am sorry to hear of such a traumatic start to Grace's first year. I do not have any experience with your situation, but I have heard of and have had limited experience with Child'Space, a method that is an offshoot of Feldenkrais method -- learning awareness through movement. Child'Space is meant to support a child's natural discovery of movement and balance, etc., and is useful for a child who is not quite on track.

Look at the web site below and contact local practioners in your area to ask if they think they can help. If you have trouble finding a local practicioner, I know some Feldenkreis/Child'Space teachers who may know someone. Alternatively, I have heard of teachers offering sessions through video conferencing, e.g., Skype.

Unfortunately, Feldenkreis classes and sessions are not considered medical treatment, at least for adults. So, insurance may not cover the sessions.

childspacemethod.com/childspace/

To see it in action:
www.youtube.com/watch?v=KCHXv7PPC0Y

Best wishes.

[mia]

Hi.  I wish there was some magic pill that could make this go away. Grace's loss of function is due to a spinal cord injury ( from the tumor or the surgery).  There are facilities that specialize in exercise based rehab to help people recover from SCI.  There are even centers that specialize in children.  I'm not sure where you live, but there is the Shepherd Center in Atlanta which specializes in kids.
www.shepherd.org/

There is Journey Forward in Massachusetts. journey-forward.org/

There is Project Walk in Califormia.  They have a new location opening in Denver.  projectwalk.com/

Sometimes traditional PT is not enough.  It's a great thing that your daughter is still able to walk and it sounds like she has tremendous potential.  These centers offer something more.  Ideally, a combination of both modalities would be helpful. Oftentimes, insurance won't pay for these therapies but I believe they are worth it.  I know people from other countries and states who have temporarily moved to be closer so that they could participate in the programs.  I don't know if this feasible, but it is a start.  Perhaps you could even contact them for advice.  Finally, in certain states/cities, it is mandated that children who have fallen behind developmentally receive services for free to help them catch up.  This is called Early Intervention.  A PT/OT will evaluate your daughter and determine if she qualifies for services.  This is very common.  Your pediatrician should be able to get you started.  Good luck!

[gordy1]

Mia has made some very good comments above, particularly in pointing out the spinal cord injury part. Ideally your daughter's doctor/surgeon should have discussed this with you (but I know from experience that does not always happen...).

[hope]

Hi gracemom. I have a daughter similar age as yours with SCT. My experience is that first year post op, there are improvements every week, so 5 months is still very short. And if she could walk and run before, it means she has minimal deficits before the surgery, now it just takes some time to recover. I know its very hard to watch all this, I wish it was me that have the SCT. Its easier to make choices of your own than choices for others.