Two Treatments To Go

[looneymom]

Tyler had a doctors appointment last week. He is making progress with physical therapy exercises. However, he is not able to stand or walk. We are still dealing with daily headache/scalp pain and hypersensitivity that indicate chronic regional pain syndrome. Tyler has been on plasma exchange treatment since last August. By now the basal gangla antibodies that were causing problems should be out of his system. However, there is still the possibility that Tyler's body is still making the antibodies. The only way to figure this out is to see what happens when the treatment is eventually taken away. He has 2 treatments in July two weeks apart. After the last treatment, he will see the doctor 4 weeks later. If he continues to make progress and gain strength with physical therapy exercise, he will no longer need the treatment.

However, if he loses ground, our doctor will rerun some testing and put him back on plasma exchange to keep the bad antibodies down. There is the possibility that some of the symptoms that Tyler is left with is perment damage. However, if he loses the ability to sit up on a bench or riding the stationary bike before either treatment, it is possible that other antibodies are involved in his health condition. Tyler could have tested seronegative for Myasthenia Gravis or other antibody test were ran earlier. Most of this testing is for adults and is not sensitive enough to pick up in children.

Tyler is still on the Namenda and the doctor is raising this medication dosage up. Back in May, we tried to wean Tyler off of this medication because we thought it was not helping. Tyler was taking an extended release tablet 3 times a day. On 2 tablets his headache did not get worse but when we took him down to one, his headache went up to a 10/10 within 48 hours. Needles to say I put him back on the full dosage and 3 days later it was at 7/10. Just this past week it dropped down to a 6/10. Our doctor decided to raise the dosage up starting this week. He is also waiting on approval from the OU medical school board to prescribe Low Dose Naltrexone which should help with the chronic regional pain syndrome. In the mean time, we are hoping the increase in Namenda will help with the pain isues. In research, Namenda has been proven to help with the chronic regional pain syndrome.

Tyler is still on all of his other medications however he is being weaned off Zoloft. This started after seeing his doctor in April. We are lowering his dosage every 3 weeks. So far so good. His moods are stable and no brain fog/memory problems. Tyler is very excited about the possibility of not having to do any more treatments.

[Katybug]

Rachel,

Thanks for the update. I'm always pulling for Tyler. I think about you all often and hope he continues to see improvements.

Katie