An Update With Research

[looneymom]

Hope everyone is well and stays away from the flu bug. Tyler caught the flu the last of January. It lasted the full 2 weeks and he took Tamaflu medication. About 5 days later, he went through a second round again that lasted a few days longer. He has lost 10lbs but is back to eating and drinking milk. I was really dreading another illness like this with Tyler but the plasma exchange finally proved that it was helping. None of his symptoms got worse and he is functioning at the same level he was before he got sick. So I am very relieved that the plasma exchange is helping his immune system.

Tyler is still doing plasma exchange twice a week. However, he only had 3 treatments the month of February because he was unable to eat or tolerate any milk products. Our doctor wants him to do 2 treatments a week until the end of March and then he will decide if he goes down to 1 a week. However, Tyler's symptoms are not decreasing and this is discouraging. Our doctor does suspect other autoimmune antibodies/receptors are involved but to test for them, Tyler would have to stop plasma exchange for 3 months. At this time, it is to risky to stop treatment since it is helping Tyler.

I have made some post in the past on autoimmune encephalities and the autoimune antibodies found in those illnesses. Our doctor suspects that Tyler has high levels of some of the NMDAR receptor subsets. The subsets can cause different symptoms. A clue to this was Tyler's high brain levels of glutamate. These NMDAR receptors regulate this in the brain. Tyler is not celiac or gluen sensitive according to testing. Some new research has come out on patients that have been found with these receptors. Their first symptom was a movement disorder (tremors) and their illness was caused by a virus, flu, or some type of infection. Tyler's tremors came on very strong after a double round of flu in 2013.

Another article I found ( 2nd article) really gives me hope that Tyler can have a full recovery. Full recovery is 2-4 years after treatment has been started. Plasmapharisis (plasma exchange) is the first line of medication to treat autoimmune antibodies that can cause encephalities type illness. In Tyler case, the antibodies for Dopamine/post strep encephalities have already been found and the next step of treatment would be second line medications which include Rituxmab or cyclophosphamide. I am hoping that we can avoid using these medications. So I have started Tyler on a supplement of serti L-glutathione to see if if will help detoxify his body and lessen his symptoms. L-glutathione is the body's superior antioxident and can only be found in some raw fruits and vegetables. It is destroyed through the cooking process. So I have started juicing oranges for Tyler everyday. For parkinson's patients the research is impressive about IV glutathione. Here are the links to articles. Hope they are helpful to someone else.

http://onlinelibrary.wiley.com/doi/10.1111/dmcn.12321/full

http://onlinelibrary.wiley.com/doi/10.1002/mdc3.12095/full

http://setriaglutathione.com/

http://www.glutathioneexperts.com/benefits-glutathione.html

[Katybug]

So glad to hear that Tyler is making progress. It's been a very long road for your family.

Thanks for the articles.