Plasma Exchange Update

[Rachel]

Just thought it was time to give an up date on my son. My son has been doing plasma exchange since August of 2014. He started out with 3 treatments a week for 3 weeks and then went down to treatments 2 treatments. We saw some progress but when he went down to 2 treatments, he started going backwards again. Our doctor quickly bumped him up to 3 treatments a week again for 11 weeks. We stayed at the Ronald McDonald house to avoid traveling 3 days a week. A one way trip to the hospital was 150 miles.

 

Since doing this treatment my son has not had any strep or mycoplasma pneumonia bacteria infections, he does not have a horse voice every day, he has gained strenght and stamina, decrease in vocal tics, he is just beginning to do some exercises without his tremors being made worse, his tremors have slowly lessened, my son has finally started sleeping through the night, his headache pain level has also dropped down. It has been a long 5 months but I am beginning to see some changes. He has not been rechecked for the antibodies that were found so high in the Cunningham test. Eventually that will be done but can only be done when treatment has been stopped for 3 months.

 

Our cardilogist has also put my son on Planquenil to see if it will help keep these antibodies supressed since my son when down to 2 treatments the month of December. So far so so good.He is stable. My cardiologist has went back and reviewed some of my son's neurotransmitter testing. His glutamate and norephinphrine levels were very high but his GABA was very low. Because his headache and mechanical allodynia has not responded very well to pex, he decided to try him on Nemanda. His headache pain level dropped some after being on it for a month. My son stayed on that dosage for 2 months and he will go up to the full dosage on extended release to see if this can get any better. There was a small study on this medication that indicated the patients had relief from their headache and allodynia after 2 months use on the extended release dosage. Our doctor has also put my son on a high doseages of NAC and his magneisum supplement levels have gradually been raised due to a vitamin D defiencey.

 

My son is much better off than he was 5 months ago. However, our progress is slow but our doctor has warned us this is a marathone of a cure and not a sprint. Plamsa exchange does cause problems with mineral inbalances and we are having to increase some supplements. Overall, I am pleased with my son's progress but healing cannot come quick enough since he has been sick with some of these symptoms since first grade. Wishing everyone a Happy New year and a Healing Year for your Child.

[mama2alex]

Thanks for posting this update. So glad to hear he's improving! Hoping 2015 will be a year of healing for him.

[pr40]

glad to hear about the improvement. how old is your son? i hope this case will suggest a course of treatment to some older patients on this forum who seem to have run of options.

[Rachel]

My son is 14 and has had some of his symptoms since he was 7 years old. Through reseach I have learned what high levels of CamKinese can do. However, the doctor and I have know idea how long my son has had these high levels of CamKnese and if his condition is reversible.