Immunology Workup-Ready to fight for IVIg again

[cobbiemommy]

DS, 15, has had unyielding fatigue and moderate anxiety for several years now. He was first treated for PANDAs with IVIg (great result then crash and burn), then treated for Lyme/Bartonella for two years and was on IV abx. for three months last summer. Contracted strep inside the lining of his nose. During the Lyme treatment, but before the IV abx, he received three doses of immunoglobulin and had much improvement in physical stamina and mental attitude. Insurance cut him off and would not pay for the treatment, even though he was precertified with autoimmune encephalopathy. We went through a year's worth of appeals, but with no positive outcome.

 

Last August, we started with a new immunologist closer to home (only a two hour drive one-way). He recommended we go to Boys Town where they have a fantastic ENT and neurologist. In November, he had a T&A, recovered beautifully, but is still fatigued and has anxiety... His school work has progressed tremendously and he made the honor roll all four quarters this year!!

 

This winter, he tried wrestling for the first time and got impetigo while on prophylactic antibiotics. He had to have three rounds of different oral antibiotics and two rounds of topical antibiotics. Still fatigued, still anxious.

 

We did testing again of his streptococcal titers, and despite being vaccinated, he has a very poor antibody response. We are getting records of his infections to make the case for a diagnosis of specific antibody deficiency and IVIg. He is taking prophylactic abx, that are rotating every three weeks, but they do not seem to work very well for him.

 

Has anyone else went this route? How did it work for you? Is the polysaccharide that is in strep the same type of substance that is in Lyme or Bartonella?

 

Any advice is most appreciated...

 

Cobbie