Easton

Diagnosis: Transverse Myelitis

Wisconsin, United States

On August 17th, 2016, Easton’s dad, Josh, noticed that something was very wrong with Easton. He called me at work to tell me that Easton was very sick and that he was bringing him to the ER in town. I left work to meet them there to find that my otherwise very active and healthy four-month-old baby boy could no longer move his arms. I went to get him out of his car seat and he was completely limp. They brought us back right away and started to do tests. They did a CAT scan and a chest X-ray and found nothing.

The doctors in town had no clue what was happening to Easton, so they called down to Milwaukee Children’s Hospital who then sent an ambulance to pick us up. We arrived at Children’s in the middle of the night and were admitted right away. After many more tests, they decided to do an MRI the next day.

The MRI showed swelling in the C2-C7 area of Easton’s spinal cord. They immediately moved us to the PICU because they were worried Easton would stop breathing on his own due to the area of the swelling. They started high dose steroids right away. Thankfully, Easton was always able to breathe on his own. A few days later, they told us the diagnosis was Transverse Myelitis and explained that because we hadn’t seen any improvement as yet, that we needed to get used to the idea that Easton might not ever be able to move on his own again.

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.


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