IVIG funded studies?

[Packer Fan]

I just heard about this forum and first time posting so apologize in advance if this is a naive question. We are 11 mo's into first hearing about PANDAS and after seeing our son crash a few times during this period only to be brought out of it by antibiotitcs, and seeing the correlation of illness and a severe increase in tics, we are convinced he has PANDAS. We went to see Dr. Nicolaides a few wks ago and she is convinced as well. Problem is we have had to constantly increase his antibiotic levels to pull him out of each succeeding crash, and he is pretty much at the max level and is no longer responding to them. Sounds like time for IVIG which is what Dr. Nicolaides suggested.

 

Here's the potential naive question- does anyone know of any research studies being conducted, or soon to be, where the cost of the IVIG is covered through the study?

[thereishope]

Welcome. I am not aware of any. There are a few who have gotten IVIG covered by insurance, but I believe most pay it out of pocket.

 

What antibiotics has your child tried? Have you cleared all family members of strep? Has he ever had a steroid burst?

[norcalmom]

Shoot. I did hear rumor that there is gong to be a double blind ivig study, but didn't get details..google clinical study ivig... Maybe add pediatric or tic and OCD or other buzz words. I think they mentioned a university. Sorry I can't remember more!

[norcalmom]

Shoot. I did hear rumor that there is gong to be a double blind ivig study, but didn't get details..google clinical study ivig... Maybe add pediatric or tic and OCD or other buzz words. I think they mentioned a university. Sorry I can't remember more!

[EAMom]

What insurance do you have?

 

You might do a search of "insurance codes". Sometime folks have had luck getting IVIG covered if the "right coding is used".

 

Have you considered seeing Dr. Latimer (DC--neurologist) or Dr. Bouboulis (CT-an hour outside of NY, immunologist. I get the impression these 2 docs have better luck with IVIG being covered than Dr. K. (Chicago).

 

Also, ditto Vickie's question re. what abs have you tried (and dose). I'm guessing if you are seeing Dr. N. she's rx'd augmentin and/or augmentin xr...have other abs been tried?

[EAMom]

PS I would also recommend doing throat cultures on everyone in the household...to make sure there isn't a strep carrier that is causing your child's relapses.

[thereishope]

I think when that study was mentioned it was going to single out kids in their first exacerbation. It would not include kids who have had subsequent exacerbations. Packer Fan's child has had more than one.

 

Shoot. I did hear rumor that there is gong to be a double blind ivig study, but didn't get details..google clinical study ivig... Maybe add pediatric or tic and OCD or other buzz words. I think they mentioned a university. Sorry I can't remember more!

[kimballot]

Hello Packer Fan and welcome to the forum. It sounds like you've been riding the PANDAS roller coaster for a while and are looking to smooth out some of the bumps. I agree with others about checking for strep. However, I also want to add that the infection triggering the behaviors may not be strep. Once a child has PANDAS, ANY infection / inflammation can cause a breach in the blood brain barrier and can lead to an exacerbation.

 

Many of the children on this forum have exacerbations with sinus infections, skin infections, viruses, and even allergies. Each of these requires different medications - or other treatments - to effectively relieve the source of the infection / inflammation.

 

My son had many years of PANDAS episodes and lived on antibiotics until they were no longer effective at 7 years of age. We then discovered that his tonsils were haboring bacteria and we had them removed and he was able to stay relatively antibiotic-free (except for a few sinus infections) for about 6 years. This year he developed an infected type of cyst in his sinuses and had to have surgery and go back on strong, long term antibiotics again.

 

I am wondering what symptoms of illness (other than PANDAS symptoms) your son has had. Do you think the infection is in his throat - or somewhere else?

 

I am not familiar with Dr. Nicolaides' protocol. Did she run tests for infections other than strep? I would love to hear about your experience.

 

It is good that you are open to IVIG, but I would not rush into it without having a good idea of your child's immune system and a good understanding of the problem. If you do IVIG with a stubborn infection in place, the IVIG may not be able to work fully.

Edited August 12, 2010 by kimballot

[Packer Fan]

Wow- I am blown away by the number of people going through the PANDAS adventure. THANKS so much for all of your replys. I needed data from my wife who is the medical 'expert' on our son- while I fight the insurance battles. We had our son (15 yrs old) in a residential OCD treatment program at Rogers Hospital in Oconomowoc, WI for 50 days earlier this year and we're still working through those insurance battles. As an aside, it's a very good program with the primary benefit being ingraining a "competing response" until it hopefully becomes routine for him.

 

To answer some of the questions that came up- Antibiotics that we have used are....Amoxicillan combined with a 5-day

course of Zithromax. We have been on Augmentin XR 2000mg twice daily since February and are now taking Cephalexin 500mg tabs a total of 2000mg per day. He has not had a steroid burst. The entire family has not been treated for strep - we are going to check on that one immediately. Dr.Nicaolaides did not run tests for other infections- and it's interesting as a recent blood test showed very elevated white blood cell count.

[thereishope]

Being that you live in WI, you might want to read the threads on Lyme as well. Here was one good thread on it, but there are many out there. http://www.latitudes.org/forums/index.php?showtopic=9327&hl

[rockytop]

keep your eyes open- i bet we will hear on the forum- but I think I heard there will be one on the east cost sometime later this fall -- i think it was after 1st or second exacerbation only- but i could have mis-heard- maybe it was first exacerbation only