Which PANS/PANDAS doctors still do PEX?

[Megan]

I have two children I feel have PANS or PANDAS. My DD (6) primarily has severe, violent tantrums when she doesn't get what she wants and my son (8) has tourrettes behaviors saying violent things especially when he is agitated like, "I am going to kill you" or "I hate my family". They have other symptoms as well but these are the most prominent. My son is battling a bad case of a mono-like virus which I feel brought this on.

 

I am waiting to get in to see Dr. Latimer next month but do not feel comfortable with IVIG for my kids due to their past history of lyme/coinfections and my concern that they could be reinfected through the blood supply. Does anyone know if she recommends PEX? Which doctors recommend this treatment now? I know it is much less common than IVIG.

 

Thanks,

Megan

[beeskneesmommy]

Dr. Josephine Elia is a leading specialist in utilizing PEX for PANDAS. Unfortunately, she is in transition from PA to DE in her practice. the credentialing process is very involved. She will begin practicing at Nemours, Dupont Children's Hosp. sometime during the former part of this year. At this time they are saying March. You might want to call them on a regular basis, every couple of weeks. The BX Health line is 302-651-4500. We also see Dr. Latimer and although we had IVig with her, I am aware that in some cases she does Plasmapheresis. I hope this helps. Best to you and your family.

[dcmom]

Both of my children had plasmapheresis at Georgetown U hospital with Dr Latimer.