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My DS just finished his first IVIG treatment


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Yeah!!!! We just finished day two of IVIG for my peanut with Dr. K. My DS did wonderful...I was so proud of him. I picked Dr. K about some of my concerns...mainly, I have heard that IVIG is not a cure, he said, "not true". I replied, "so I can assume that after this that there is a good chance that my ds will never deal with this again?", he said, "yes, that is true". I must say, while his answers were single worded, they were said sincerely, and with conviction. It really lended me confidence for my Ds. I also asked him about the whole good at math connection with these kids...he unfortunately had now answers for this, he said, "this is one of those areas that we are aware of, but have no idea what it means or if the association matters". I asked him about heart damage, again, he was very succinct..."there is no proof that pandas causes heart damage"....I asked him if severity levels show different outcomes with success in ivig...he said, " I do not see any associations with regard to severity/degree of symptoms that point to a lesser success rate with ivig...So, it was all positive. Dr. K was very confident, in regards to the long term benefits we could experience and even a cure. I asked his nurse assistant, who, appeared very well versed on Pandas and seemed to be involved with a lot of Dr. K work, "how many times do you have to give a child a second treatment?" she said, "rarely"....that being said, while I took that as a positive, am aware them some people don't come back because they saw no measurable improvement in their children....nonetheless, I wiil see this as positive....This just has to work...it just has too....

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I would not say rarely. I think he has a decent percentage of kids who do two. My DS is one of them. I know quite a few kids of Dr Ks who has done two. That said, the majority may have only one.

 

My small experience is that the first time DS had IVIG, the other two kids were fairly mild in presentation and that is the only IVIG they've had so far, two yrs down the road. Our son is more middle of the road on severity. He has always attended school and done well but is horrible at home. He's had two ivigs. The second time, the boy getting IVIG with him had severe anorexia. Several kids who were severe have had two.

 

Bottom line, its really individual. We'd all like to think it will only take one but the reality is, you cannot predict.

 

That said, we love Dr K and we are grateful to him for all he's done for DS. We would do number three if its necessary.

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Just curious if the dose you got was the 1.5g/Kg or the amount (I believe) Dr. Swedo is using at NIMH--2.0g/Kg. Correct me if I am wrong. I pray one time does it. So many have a hard time getting insurance coverage after one or are broke after one and can not return to get another. In our case insurance covered several, but we still had underlying infections that needed to be dealt with so the results would start disappearing after about 8 weeks of improvement. The PANDAS IVIG study can't get done & published soon enough so our kids can get treatment right away. Blessings & prayers. Dawn

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My ds had 40 grams....Interesting that some of you feel there is a link on how symptomatic/severe the child is before receiving the first IVIG. My DS is probably on the mild side...although he has had four episodes, 2 big 2 small in the last t 1/2 years. I asked Dr. K about that theory, and he said that severity is not a predictor of results. As of today, 3 days post IVIG, my DS is looking back to normal. Gone are his hyper-repetitive movements, rage, temper-tantrums, inability to reason, etc, etc.....Apparent is his ability to focus, to reason, to remain calm, no bed wet's. It is almost odd. I do know that about five days before treatment, I felt he was coming out of his latest episode...waxing/waning.....As of IVIG..Waxing/waning GONE. He looks like someone who just went through reform school. My ds's baseline when not symptomatic is so polar opposite then when he is. It is still so hard to wrap your brain around this..even when it is right there in front of your eyes....This just can't resurface again. It just can't. Thanks for all the well wishes!

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