Greetings From Oklahoma

[looneymom]

Just wanted to give you an update on Tyler. He saw his cardiologist on Friday. His POTS is immune related and has been caused by strep and mycoplasma infections. If these infections are not taken care of then the antibodies will form and cross over into the brain barrier. When this happens, it can mess up so many body systems. These antibodies are found in the plasma and this is the reason why Tyler is having to do the plasmapharisis treatments. This is the only known treatment to get them out of the body. Tyler wishes this cure would provide immediate relief but the problem is that Tyler has been sick for a very long time. Tyler has had some of his symptoms for 7 years. The CamKinese, Dopamine 1 and Tublin can cause neurological symptoms, heart failure, vocal tics, speech problems and many other symptoms.

Tyler is going into his 3rd week of 3 week treatments again and I am beginning to see some of the small changes come back that I saw when he did the first round of three a week treatments for 3 weeks back in August. His tremors are less, his hoarse voice is gone, his strength and stamina is much better. He is able to do a few exercise without having tremors start. However, our doctor did tell us yesterday that Tyler may have to do the 3 a week treatments for much longer than 6 weeks. Tyler regressed very quickly after he went down to 2 treatments a week in the month of September. His immune system was not strong enough to over come the antibodies. The antibodies started building up and he started sliding back. It was heart breaking to see him go backwards. However, as long as he is making progress and getting better with 3 treatments a week, my husband and I don't care how long this treatment plan takes. The hard part is living away from home. We are staying at the Ronald McDonald House but I don't miss traveling the 300 miles a day 3 days a week. We did this the first weekof treatment until a room became available.

Our cardiologist also talked to us about Dr. Kems OU research. Tyler was too young to get into his study but his testing is going to be availlable soon through insurance. This will be the next testing for Tyler. Our cardiologist does believe his testing will come back positive and seems to think other possible antibodies are involved in his condition as well. He said that lots of POTS research going on in Oklahoma and Vanderbelt. All of this research should benefit everyone on the forum. Vanderbelt does have some adult studies going on with some other antibodies. I have not had time to do a search but I will start researching again.

BTW the flu season is here in Oklahoma. Our doctor has told us to get the flu shot not the flu mist. The flu mist is a live virus.

[valiz]

Thank-you for the interesting update. So happy that Tyler is seeing improvement even if it isn't as fast as you would choose it to be. It takes patience and you are the best Mom for him. I love hearing about new research and it offers us all a bit of hope. Take care of yourself and Tyler. liz

[Raisin]

Thanks so much! It seems they have really targeted what is going on with Tyler (with your great help as well). It must be amazing if you look back at where you started. It doesn't sound perfect but there is hope and hope is good. You sound strong. Good job mom!

I hope you are right about the promising research happening too! I will hang my hat on that this evening. Prayers.

[Runnersmom]

You are such a good inspiration with all your research and support for your son. It is tough watching our family members go through this ordeal. It sounds like your cardiologist is very good and is figuring things out. Hang in there! You are a good Mom!

[corina]

Thanks for the update Rachel! And for all the info your share for others to benefit! Good luck to Tyler and his treatments!