New to group-need help high dose IVIG

[Healingthedude]

I have a son with severe PANDAS/AUTISM. His Tics and OCD have been gone for 17 months using IVIG. He was doing amazing.

The PANDAS suddenly came back the end of May and the treatments are no longer working.

We went to see a very good immunologist the beginning of Sept and he recommended High dose IVIG. 1.5G/1kg

 

We have been doing the lower dose treatments at our local hospital and my son tolerates it well.

It takes a huge amount of work and preparation to do this treatment with a hyperactive/OCD 10 year old boy with Autism.

We have to have the same hospital room, same nurses, same rewards for putting the IV in etc every time or he will tantrum

and possibly pull the IV out etc. I was hoping the immunologist could go over the specifics of the high dose protocol

with our local Doctor so we could continue to do this where my son is comfortable.

 

The Immunologist refuses to talk to our pediatrician. He says he should already know how to do it.

He just sent a short letter recommending the high dose protocol for my son.

I am so frustrated. He wont discuss the steroids or how to space out the meds over 2 days, etc.

 

I have called my DAN Dr to talk to Dr K in Chicago.

We just want to make sure we are following the right protocol at the hospital to prevent reactions and avoid any undue headaches, nausea etc.

 

Any specific info on the 2 day high dose protocol or help facilitating communication between the Drs would be greatly appreciated.

Where do you guys have your IVIG done. Will your Doctors send orders to your local hospital or do you travel for the treatment?

My son is having upwards of 800 tics a day at school.

I am very stressed by the whole situation and just want to see my son get his treatment and some relief ASAP.

Thanks for your help.

Carolyn