If child is improving with antibiotics...Do you still do IVIG?

[3boysmom]

Our son is improving greatly but too soon to say he is well and too scared to jinx this. If he seems to be well (except for our new ADHD) do you still do IVIG. If you don't move onto IVIG then will we miss our chance to be PANDAS free? I'm afraid to mess with success but do want to be proactive!

[sf_mom]

Please consult with a Dr. who specializes in PANDAS as to your specific history and what the outcome 'might' be for your child. I think a lot depends on how old your child is, was your child unknowingly sick prior to sudden on-set, what resolution in symptoms you are seeing with antibiotics, etc.

 

I know with IVIG treatment our son has received we have had almost complete resolution in symptoms including ADHD.

 

Our son is improving greatly but too soon to say he is well and too scared to jinx this. If he seems to be well (except for our new ADHD) do you still do IVIG. If you don't move onto IVIG then will we miss our chance to be PANDAS free? I'm afraid to mess with success but do want to be proactive!

Edited April 8, 2010 by SF Mom

[EAMom]

Our son is improving greatly but too soon to say he is well and too scared to jinx this. If he seems to be well (except for our new ADHD) do you still do IVIG. If you don't move onto IVIG then will we miss our chance to be PANDAS free? I'm afraid to mess with success but do want to be proactive!

 

That is the $64,000 question!! And the answer would depend on who you asked.

 

If you were to ask Dr. K he would say "yes", you should do IVIG. And I don't even know if Dr. N (the you are phone consulting with) even treats PANDAS kids with IVIG! Dr. Latimer does a lot of abs/steroids and then plasmapheresis if needed, sometimes followed with IVIG.

 

There are some kids (T. Mom's, Kayanne's) on this board that are well controlled on antibiotics (often long-term full strength). These folks might have had a course of steroids at some point as well.

 

Originally, we ourselves found pretty good control of our symptoms with Azith 250mg/day, but after a year (with strep exposure here and there, and viral illnesses) we realized our "baseline" was rising and symptoms/exacerbations were gradually worsening....so we opted for IVIG (and are glad we did). If we needed to repeat IVIG we would.

Edited April 8, 2010 by EAMom