Update....we have a plan now. New onset PANDAS

[Kimflow]

Hi,

 

Wanted to update you all on my son. We got in to see Dr. L. She had cancellation and we live close. We are 8-10 weeks into this journey.

Recap: marked escalation in anxiety/new OCD/verbal triggers of anxiety..........I read about PANDAS......took him to Dr. and said swab him.....positive rapid.

zpack, amoxicillin, keflex failures while still on the antibiotics......augmentin was next ....5 days worth but then we got into see Dr. L.

 

Her plan for our son based on history:

 

Clindamycin followed by Rifampin

IVIG asap

Tonsillectomy while IVIG on board

she also diagnosed his adventitious movements as syndenhams chorea

 

Currently, he has verbal triggers but is easily talked through it and moves on., his choreiform movements are variable, afraid of the dark but separation anxiety, OCD pinching of tops of his feet are gone on Clinda. One positive in all this is that we are seeing MORE language.

 

Thanks to all of you who talked me "down" when I was on the ledge initially when I couldn't find anyone to help us.

 

I will post separately on questions I have regarding IVIG and Tonsillectomy.

Thanks, Kim

[sosudden]

Hi! So happy you have a plan! That eases things ever so slightly - although it is still brain-numbing to watch this happen to our kids!! IVIg is working for our 9 year old daughter! Keep us posted!