Just back from IVIG with Dr. K

[madbay]

This is my first time posting, but just wanted to say how great I think Dr. K is. My D6 had 3 strep infections last Spring, and by June she was crazy. Counting, obsessiing, crying, raginig, eye dilation, hyperactive. We got progressively worse throughout the summer, then the ped suggested PANDAS. Elevated DNAse, started ABX and within 5 days she was back. UNREAL. 100% improvement on ABX, but decided to go forward with T&A. 2 weeks before T&A she got off the bus funny, then we had a rage before bed and a ritual. Morning was rough, so I took her in to the ped...+ for strep while on antibiotics and the sore throat came after the behavior change! Got T&A on Nov 21st but we have never been able to get back to Sept and Oct when we first tried the abx. I decided to do IVIG and flew to Dr. K in Chicago this past week. We did qualify for the NIH study, but I was concerned about the spinal tap and the placebo factor...I just felt like I needed the IVIG immediately. Well, we were back home yesterday. IVIG, aside from cost, is no big deal. She did vomit a few times the day after, but that resolved and she has been fine since.

If anyone is contemplating IVIG I highly recommend Dr. K. You would be in great hands. Now, I just wait. 12 weeks they say till I know. Here's hoping!!!

[Chemar]

Hi and welcome

 

as your first post was caught in out spam filter, I am bumping it up for other members to see

[Mayzoo]

This is my first time posting, but just wanted to say how great I think Dr. K is. My D6 had 3 strep infections last Spring, and by June she was crazy. Counting, obsessiing, crying, raginig, eye dilation, hyperactive. We got progressively worse throughout the summer, then the ped suggested PANDAS. Elevated DNAse, started ABX and within 5 days she was back. UNREAL. 100% improvement on ABX, but decided to go forward with T&A. 2 weeks before T&A she got off the bus funny, then we had a rage before bed and a ritual. Morning was rough, so I took her in to the ped...+ for strep while on antibiotics and the sore throat came after the behavior change! Got T&A on Nov 21st but we have never been able to get back to Sept and Oct when we first tried the abx. I decided to do IVIG and flew to Dr. K in Chicago this past week. We did qualify for the NIH study, but I was concerned about the spinal tap and the placebo factor...I just felt like I needed the IVIG immediately. Well, we were back home yesterday. IVIG, aside from cost, is no big deal. She did vomit a few times the day after, but that resolved and she has been fine since.

If anyone is contemplating IVIG I highly recommend Dr. K. You would be in great hands. Now, I just wait. 12 weeks they say till I know. Here's hoping!!!

 

A spinal tap is a must for the study? My kiddo should not be having spinal taps due to other issues, so I am just curious if it is a requirement.

 

I hope you get back the ground lost with this treatment. Good luck.

Edited January 9, 2012 by Mayzoo

[bigmighty]

A spinal tap is a must for the study? My kiddo should not be having spinal taps due to other issues, so I am just curious if it is a requirement.

 

 

Yes. DS was required to have two LPs in NIH study.

[Mayzoo]

A spinal tap is a must for the study? My kiddo should not be having spinal taps due to other issues, so I am just curious if it is a requirement.

 

 

Yes. DS was required to have two LPs in NIH study.

 

Okay, thanks for the answer. That would rule her out of the trial then since she has Arnold Chiari Malformation and should only have LPs when critically necessary since they can affect the distention.