Our Update

[sf_mom]

Dr. K did the same two day dose.

 

So glad to hear you son is doing so much so quickly!! What was the ivig dosage Dr. K used? Was it the same 2-day dose as the first time?

[sf_mom]

Oops.. accidental post.

[RI Mom]

Hi: I'm new to the forum- 9 year old daughter diagnosed last month but suspected PANDAS for 2 years. She had Kawasaki at 20 months and I'm just trying to understand how my daughter can have 2 autoimmune diseases at this age and what I can expect in the future. Any advice is appreciated.

[sf_mom]

So sorry.... BUT, thankfully I don't think your daughter is suffering from 2 autoimmune diseases...... PANDAS, is SC, is RF, is potentially Kawasaki's. Unfortunately, Kawasaki's was new to the US in the 1970s and very rare at the time and there are no long term studies of related illnesses/diseases so they are now just making the connection. Dr's/researchers in Japan realized in 1993 that in 100% of the Kawasaki's patients the exotoxin of the S. pyogenes was present. An exotoxin is the toxin the bacteria throws off.

 

Hopefully, I'm making sense..... I recommend consulting right away with Dr. Kovacevic. As you may know, IVIG is the only treatment known to resolve Kawasaki's. My fears for my son are similar to your daughters. Original IVIG treatment did not rid them entirely of the bacteria/auto-immune response and now you are seeing further problems from original illness.

 

Have you had immunological testing done on your daughter yet?

 

-Wendy

 

 

 

 

 

 

 

Hi: I'm new to the forum- 9 year old daughter diagnosed last month but suspected PANDAS for 2 years. She had Kawasaki at 20 months and I'm just trying to understand how my daughter can have 2 autoimmune diseases at this age and what I can expect in the future. Any advice is appreciated.