CRPS parents explain the journey

April 16, 2018

 

Jed never went to school for a whole three months before he was admitted into hospital but unfortunately it can only be you who can tell them what CRPS is and tell them how these children suffer through this disease with no help from anyone. Look at our jeditedi.net.website to get some knowledge of how everyone in the family suffers, not just the sufferer.  Parent’s of these kids know the extent of the pain. Sometimes it's a hard fight, but we have to do it..

And we must. We won't give up until everyone knows what to do and how to treat it.

 

We were all learning as we went along, and I found it helpful to partner with the School and explain many of the  difficulties our son was experiencing.

One of the things he had great trouble with, was groups of more than 2 or 3 people. We found that along with the CRPS, his sensitivity to sound was amplified, and his anxiety went sky high from fear of being bumped. A bump could send him into agonizing excruciating pain for hours.

 

School is difficult for them on a number of levels. In order for it to work, the School and staff really have to be 100%

 

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Jedi Tedi

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