Consult today with Dr K

[pandasstl]

Sooo-we had our phone consult with Dr. K today. It was nice in a weird way to hear one of the leading specialists confirm that indeed our son does have PANDAS without a doubt. (which is good because we have already done IVIG (14 weeks post), steroid taper and antibiotics). Dr. K says we should only do hd IVIG once. He said he just met with Swedo --my son has a few tics which has freaked me out. We are going to run immune complex tests and a mycoplasm test and if he continues to decline, we will give a "booster" IVIG-not the HD IVIG but a different amount. Does anyone know what dose this is? I think he wants to wait until the tests come back but I am not known for patience anymore. My other question is for those with previous IVig experience. Did you see regressions after IVIG at this far out and if so, how long did they last? He is not sick that we know of (which is why we are running bloodwork to make sure).

Edited December 1, 2010 by pandasstl

[dabel]

We have been treated by Dr.K and just recently (in the last two months) he said that my son obviously needed another IVIG. He did not say booster and we did get another at the 1.5 dosage. This is the second time I have heard of this booster IVIG ...... another mother mentioned it recently. I am curious what this is also. It must be something somewhat new to the approach that he is taking.

[JAG10]

Did he say it would be a "one time" booster or an ongoing booster?

[dabel]

Oh, to address your second question we did see regression that far out and farther. It was due to exposure a couple of times and was short lived. Then he got what they believe was MRSA 5 months out and the regression was more but went away by adding double strength Bactrum to his 875 2x's/day Augmentin. Then at 9 months he got a mild virus and that's all she wrote. This was in September and with IVIG and change in abx etc we are still trying to get back to where we were.

[Johnsmom]

We had IVIG in June with Dr K but DS got re-exposed and he mentioned this "booster IVIG". I never asked what he meant but I thouht he was referring to another HD IVIG. ??

[pandasstl]

Dr. K said that once we did the one 2 day 1.5 HD IVIG, that was it. that kids typically fall into 3 categories if it is not caught within the first week.

1. They need one HD IVIG and prophylactics. --then vigilance. He said his stats which he said were a small group-no major study scale were 90% improve after 3 months. For our case, we have definitely seen improvement, just have seen some tics which just freaked me out big time.

 

2. The kids who get one IVIG and then "stall" or start to slip at 3-4 months out. They recover 60-70% and that's it. They require a booster--not the major initial HD IVIG but he did not clarify at this time what that dose is. He said that for us, we needed to check for co-infections and immune panel which we drew like 5 vials of blood for today. He did not say if the booster should be repeated if in the future we should have a major problem.

 

3. Non responders to 1 or 2. Further Research if it is another type of infection or a true psych disorder.

 

He said they have had one 24 year old come down with psychiatric symptoms after strep infection (nice).

 

He also said the children with major headaches actually have the best outcomes. He said he had just had a meeting with Swedo I guess last week when he was out discussing some of this stuff. He was such a pleasant, brilliant man and worth every penny of the consult.