Here is a description from his parents:
Our son Sebastian (we call him Sebi) is 13 years old and has been suffering for three months with a wide variety of symptoms like ranging from extreme fatigue, dizziness, lack of muscle strength, sensitivity to light, mood swings, depression to anxiety.
The diagnosis process has been very difficult, we started with salmonella. Once the treatment for salmonella was completed Sebi had one day where he felt ok, then everything changed. He was so weak that he could not even lift himself up from his bed. The second diagnosis was Post infectious encephalitis. All the symptoms seemed right and we all prepared for the long haul of recovery. He had an MRI, and a spinal tap to see if there was any lasting swelling in the brain. Results looked normal. We continued with the treatment.This was a difficult battle because we felt as if it was one step forward and two steps back. Lots of ups and downs. We felt as though this was all part of the recovery process, as the brain works to heal itself it shuts down the rest of the body to concentrate its energy on healing the brain.
Two weeks later when we were walking in a grocery store, one moment everything was fine and then all of a sudden he just dropped to the ground and said he couldn't feel his legs or arms. We went back to our Dr. and did another blood test. He thought it could be lyme disease but the test was inconclusive.
This is when we checked back into the hospital with an internist. Sebi had two more MRI tests, one for the brain and one for the spinal cord. The results showed the possibility of swelling around the spinal cord. Another two MRI tests were ordered to take a closer look, one of the upper neck area and one of the lumbar area. Results showed swelling vertically along the spinal cord and swelling to the nerve roots in the lower lumbar region.
Following the MRIs Sebi went through a very painful electromyography test. These results ruled out Guillain Barre and concluded the possibility of having Myelitis. (Myelitis involves the infection or the inflammation of the white matter or gray matter of the spinal cord which is a part of the central nervous system).
He has now been readmitted to the hospital and is getting treatment for Myelitis. The treatment should require 3-7 days of steroids to reduce swelling.
So far with three hospital stays, 5 MRIs, a spinal tap, an electromyography test, 3-7 days of cortisone , we have maxed out our credit cards.
We still need further tests to try to understand the underlying cause of the Myelitis as well as physical therapy to help Sebi regain muscle function to be able to move normally.
Sebi has showed tremendous strength and courage over these past three months, he just wants to feel better, and be able to go back to school and be normal. We want to do everything we can to help him get the care he needs. We need help to do that. We are reaching out to see if anyone can help in any way possible. We humbly ask for and appreciate any help you can give.
- Cassie Goldsmith
- Karla Gomes
- Gloria Aranda de Martínez
- Manuel Becerra
Organizer and beneficiary
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