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100 days to spread hope.
Fight rare neuro-immune disorders. Together.
David’s Journey with Transverse Myelitis started the summer of 2016. After attending a birthday party and having a good time running around, he started complaining of neck pain and arm weakness. He had neck pain and stiffness as a recurring issue whenever he had upper respiratory infections, however the arm weakness was a red flag for us so we decided to take him to the ER to get him checked. After 10 days of hospitalization, two MRI’s, CT Scan, Lumbar Puncture and testing for all known diseases, he was diagnosed with Transverse Myelitis caused presumably by a severe Strep and Enterovirus infection. MRI showed David’s damage on the spinal cord between C3-C7.
While at the hospital, he could barely move, he couldn’t walk, he was paralyzed completely in his left arm and hand and almost entirely on the right hand. He could not sit nor had any strength to even walk. We were offered various treatments, such as Plasmapheresis and IVIG which we rejected as we felt they were not proven methods to treat TM. During our hospital stay, we were extremely frustrated as the doctors did not seem to have any clue on the root cause of the problem. While we were at the hospital we took our time to do our own research and found a very similar case documented in the CDC’s site caused by Enterovirus C-105. So we informed the hospital staff and after almost eight days, they agreed to start IV steroid treatment for three days. As we did not see improvement and doctors told us that there were no treatment options available, we decided to take David home. We had to take him home under AMA (Against Medical Advice), as the doctors wanted to do other experimental treatments. However, we did not feel comfortable with them and decided that it was best for him to be home and be able to have peace and proper rest so he could start recovering from the hospital stay.
Child Protective Services were sent to our home on the grounds of Medical Neglect as we took David on AMA. However, the CPS inspector was extremely pleased with our approach on David’s home treatment that he decided to close the case immediately.
We couldn’t take “There is NO cure” as an answer so we decided to do extensive research on ways to reduce the spinal cord inflammation and also on ways to help the body produce and repair myelin. We found that there are several essential oils and herbs that are very helpful to reduce inflammation. We also found plant extracts that are extremely beneficial for nerve repair and that having a high polyamine diet and some essential amino acids are vital for myelin production. We also found that David is sensitive to heavy metals as he was vaccine damaged at age 2; we switched his diet to all organic unprocessed food to avoid harmful toxins.
As of today, 100 days after his onset, he is able to run again, he has recovered tremendously and is attending 1st grade at the public school. He is going to Physical and Occupational Therapy twice a week and has daily massage and PT at home. We continue his organic diet and herbal supplementation.
What are we hopeful for? We hope that the FDA approves or recognizes the use of natural herbs and oils for treating illnesses such as Transverse Myelitis. We are also hopeful for better knowledge around the medical community on the symptoms and treatments for TM as we feel if the doctors were better informed, David would not have suffered as much as he did during his hospital stay.
Alex & Mariana Villaseñor
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