We were obviously devastated but refused to believe that our little man would never move again. That is when I found SRNA and got in contact with Sandy Siegel. He responded right away and was able to guide us on the next steps we should take. He told us about plasmapheresis. We did our research and told the neurologists the next day that if they were not willing to try plasmapheresis we would be moving Easton to somewhere that would. Thankfully, the neurologists agreed to try it. After five plasma exchanges and more steroids, Easton slowing began to move his arms. After a couple more complications, including a UTI and blood infection, Easton was finally discharged three weeks later to continue outpatient therapy.
We now do therapy five days a week at the CP center and we are seeing great improvements. Easton can now use both arms fully. His hands, legs, and trunk are still weak but overall we are hopeful for a full recovery. The most difficult part for us as parents is seeing what he used to be able to do compared to now, but we don’t dwell on the past. We hope that more physicians and providers will be educated about TM so that no one goes misdiagnosed or untreated. Were it not for SRNA and Sandy, we are not sure if Easton would have had the great improvements that he has. My baby is still a very happy baby and we are so proud of all of the strength he has shown us.