What are the other results from the cunningham test besides cam kinase

[ajcire]

I think I saw mention that there were other results people got too besides just cam kinase? What are those tests for?

[faith]

I think they are the 'type' of antibodies that the child has. my son had an exceptionally high lysoganglioside, and I asked Dr. L. what that meant, and she said just that he had an abundant amount of that particular antibody. didn't mean anything in particular, because I asked if that one caused any symptom in particular and she said they just don't know yet. I think the purpose of this testing was to compile it and evenutally see what it all seems to mean, their goal is to "correlate symptoms with the test results and our children are contributing to the study'. I don't think we or they can say it means anything yet.

 

 

Faith

[ajcire]

Thanks Faith.

 

 

 

I think they are the 'type' of antibodies that the child has. my son had an exceptionally high lysoganglioside, and I asked Dr. L. what that meant, and she said just that he had an abundant amount of that particular antibody. didn't mean anything in particular, because I asked if that one caused any symptom in particular and she said they just don't know yet. I think the purpose of this testing was to compile it and evenutally see what it all seems to mean, their goal is to "correlate symptoms with the test results and our children are contributing to the study'. I don't think we or they can say it means anything yet.

 

 

Faith

[fuelforall]

My doctor spoke with Dr. Cunningham about the high lysoganglides and his conclusion(made from speaking with Dr C) was that it simply offered more confirmation that my son has a lot of autoimmune issues that need to be treated. Consistent with encephalitis, etc.

[KeithandElizabeth]

Michael:

 

What are your next steps with your son in terms of treatment?

 

Elizabeth

[fuelforall]

Fourth down and 20. Punt.

 

I guess watch the bumped up Zith and see what happens. In January, I will supposedly have coverage for more iVIG, if I so choose.

 

Michael