Dr K's practice re: number of IVIGs

[T_Mom]

Does anyone know if Dr K does a second IVIG (or more?) and how long after the first?

[nicklemama]

Dr K does do a second IVIG, if needed. I do not know the spacing. I believe its on an as needed basis, as judged by Dr K.

[T_Mom]

Thanks nicklemama--

[Worried_Dad]

Yep - our ds had 3 rounds of IVIG with Dr. K. Ds did very well for 2-3 months after round 1, then another infection sent him downhill. Dr. K recommended another round... but we wasted months trying to get a local doc to order it locally in-network. (Couldn't afford to pay up-front again at the time.) Long, bizarre story - 2 local docs agreed to order it, then reneged - and after another horrible exacerbation, we did 2 more rounds 28 days apart (because things were really grim and Dr. K wanted to "knock the PANDAS out").

 

So we did 1st round in Oct 2008, waited too long, but then did 2 more rounds in June and July 2009.

 

From what Dr. K said, he often sees older kids (> 10) need a 2nd round but will go to additional rounds if warranted, based on patient's condition and response.

 

Good luck!

[Mary M]

Our dd has had 2 IVIgs with Dr K.

Mary

from Michigan

[T_Mom]

Thanks for the info.--We are seeing saw tooth recovery (we believe) in our youngest d (11) now 9 weeks post IVIG. Very thankful for the calming of her rages, etc.

 

This is the most amazing thing--to see a child go from raging ODD/OCD to relatively "normal" again...with ups and downs certainly, but she is so much better than she was pre-IVIG it is incredible.

 

Thanks again for the input.