PANDAS Treatment

[abeckett93402]

I was told by some friends of mine to make sure I post what we have been doing to help our son who has PANDAS since 2003. He had a very severe case after scarlet fever in May 2003. He went untreated and undiagnosed until 2004. The children's hospital in madera ca is amazing. We started with IVIG and antibiotics. They helped. But my son was experiencing too many of the side effects of IVIG and the benefits seemed to be short lived. We were then referred to the hospital Rheum/immunolgy dr wright. We started Rituximab (b-cell ablation). It has worked wonders! After 8 weeks of treatment my son was completely symptom free for ^ months. As his antibodies started to reproduce, his symptoms returned. We hit him again with another round and he responded the same way. Each time there was a longer time in between doses. He is also receiving SubQ ig therapy called vivaglobin/ heizentra every week. This is so his body has some way of fighting other infections that may creep in. We love the subQ since there are no side effects and we are able to do all the treatments at home. If any of you have questions, please feel free to contact me. If you live in CA, I have an amazing team of Drs who are complete supporters of PANDAS and PITANDS. Our school system here is also incredible to give any help they can while he undergos treatments and can't go to school. Looking forward to a good 2011!

[lynn]

That's pretty amazing. Is this considered a new/innovative treatment or is it just an entirely different group of doctors? Have you noticed any side effects or herxing? Are there any doctors doing this on the east coast? Thanks so much for posting here!

[Phasmid]

Welcome, A-

 

can you give a description of your son's symptoms? How long after scarlet fever dx did he start with symptoms? Who actually made the diagnosis, the dr. you're with now? Finally, what are the risks of the treatment your son receives?

 

Thanks-

 

 

 

 

[trggirl]

Thank you for posting! I would also be interested in more details on this treatment.

[TexasDad]

This has my attention. A Google search on "b cell ablative therapy" yields some interesting results, including research articles. On the surface, sounds like just the ticket for auto-immune diseases like PANDAS. Seems worthy of exploration at least. Would love to see more info and reports like this.