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IVIG Dose


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A recent post asked folks if they regret doing IVIG. As the post progressed the topic of IVIG dose came up. I have heard about people getting a one -time delivery of IVIG or two-time delivery of IVIG and I have also heard about people receiving IVIG on a monthly basis for an extended period of time. I've also heard that some people get 1.0 mg, some 1.5, and some 2.0. I am trying to sort this out and see what people have had success with.

 

For those of you who have done IVIG - I am curious as to the age of your child, if your child had immune deficiencies, and the dose and frequency of the infusion.

 

Thanks so much!

ps- if there is already a thread about this that I missed could someone help me find it? - thanks

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Our son had what was to be the first of monthly infusions of IVIG in January at a dose of 1.0g/kg of bodyweight. Several weeks after the infusion when the improvements we saw initially had disappeared, we contacted Dr. Kovacevic to ask him his opinion on IVIG for our son. Dr. K as they call him, who has treated in excess of 500 PANDAS patients, was adamant that 1.0 g/kg was too low of a dose for PANDAS and that monthly infusions were also wrong for PANDAS. In laymens terms as I remember, he said that a minimum of 1.5 g/kg was needed to put the autoimmune portion of PANDAS in remission or cure it or whatever you want to call it. He said that this amount was mathematically derived. He also said that doing the infusions monthly was bascially stirring the pot too frequently when what was needed was a chance for the immune system to settle down and reboot itself. That same week that we contacted him, several other families had also contacted him, all whose children were doing monthly infusions with little postive results. Dr K. took it upon himself to contact the doc doing the monthly infusions, Dr. Bouboulis, a fantastic, brilliant immunogist(same doc who was on the Today Show with Lauren Johnson, the girl with the sneezing tic) to dicuss IVIG dosing. Dr. K convinced Dr. Bouboulis to change his protocol to the higher dose of IVIG, 1.5 g/kg minimum and to do it only as needed, possibly only once if that's all it took. So obviously Dr. K's rationale, reasoning, evidience, were sufficiently convincing to change Dr. B's mind.

 

I am not saying that this makes it fact that it is wrong to do the monthly low dose. All I am saying is that the doctor who has treated more PANDAS than anyone with great success says that monthly low dose is wrong and that his argument is apparently pretty darn convincing.

 

I did see a post on the forum a month or so ago about an adult with OCD who did monthly low dose IVIG and over a period of six months or so the OCD completly dissappeared. So maybe low dose monthly works in some cases. Dr K believes that IVIG becomes less effective as the person with PANDAS becomes older. Maybe instead monthly low dose works for teens/ adults. Who knows?

 

Personally, since my wife and I decided that for our son, the potential benefits of IVIG outweighed the risks, we were open to trying both. If Dr. K's approach doesn't work, we'll probably try monthy, provided we could get it covered by insurance. What I wouldn't do is give up on IVIG if I had tried only monthly or only high dose without giving the other a chance.

 

For what it is worth, my son is 8 weeks out from the high dose and is doing pretty darn well. The changes have been really dramatic, and the biggest changes didn't start happening until we were 6 weeks post IVIG.

 

Hope this helps, Alex

Edited by Alex
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My son is 14, has asd, severe global dyspraxia, and PANDAS. We just completed month 13, of Gammaguard. Started out 1x month using 1.0mg, then over 2 days for 6, but he had huge growth spurt during the second series; now at 2.0 (over 2 days) for the next 6x. I believe success depends on many factors, plus other co-morbid conditions, whether identified or not. Choreiforms movements are the real problem right now, along with OCD, tics are less frequent.

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My 15 yo daughter (nonverbal, autistic and very dysfunctional) improved quite a bit on high dose zithro has just started very low dose IVIG every 3 weeks for immune deficiency. We get the second one tomorrow. The 1st week after the 1st time, she got a little worse (but it was subtle), but was back to as well as she had been doing the second week. I don't know if this is going to do any good at that dose, but I'm going to give it a try for a while and if we do not see continued improvement, we'll talk to the immuno about raising the dose. After hearing stories of initial exacerbation at the higher dose...I'm hesitant. Alle's bad is very, very bad.

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Alex, how severe was your child's PANDAS, would you say? My son is pretty hardcore.

 

Michael

 

I'd say my son was moderate PANDAS when he had the high dose 8 weeks ago. He was in a terrible state, and because of his rages, the family too. But compared to excorcist stuff I've read about I'd say he was moderate.

 

Did you see Amy S' post about 17 months after IVIG update. Sounds like her child had PANDAS the worst of the worst and is now doing great. If you want success stories, contact the creator of the pandasnetwork website, Diana Pohlman, thorugh the link on the website and she can give you many.

 

Good luck, Alex

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My dd14 had mild-moderate ASD (now no longer meets the diagnostic criteria for ASD) and very severe PANDAS. She also had colitis when she was younger but we treated with GFCF diet, supplements, and monthly glutathione IVs and has since recovered from colitis.

 

I traced initial strep infection back to age 2 (impetigo) followed by overnight onset of PANDAS symptoms one week later. Never had strep throat but lots of sinusitis and very high titers. However, PANDAS was not diagnosed until age 7 when she was placed on Penicillin and has been on it ever since. Her IGg levels were below normal range but not considered immune deficient.

 

Her first infusion was at age 12.5 (1.5g/kg over two days) followed by monthly infusions at .75g/kg for months after. In month 3 most of daughter's PANDAS symptoms disappeared, but I cannot say whether it was due to the first high dose infusion or the monthly lower dose infusions. I have a feeling it was because of the initial high dose infusion. This past winter she had a setback and we increased dosage to 1g/kg (which did not help) and then last month to 1.5g/kg, which did help. That was 4 weeks ago and we are now taking a 3 month break to let the antibodies settle. I have definitely seen an improvement since doing the higher dose infusion. If I had to do it all over again (and now knowing that my daughter does not have a problem tolerating 1.5g/kg) I would do 2g/kg, wait 3 months, and if needed, do another infusion at 2g/kg.

 

When I first contacted Dr. K by email over 3 years ago he was not optimistic given my daughter's age. However, thanks to IVIg I have my daughter back! Is she considered in remission? Definitely not...but the tics are 99% gone and we are no longer dealing with violent rages, which could last for as long as 2-3 hours apiece and as frequent as 1-2 times per day. She still deals with anxiety and OCD and some mood dysregulation when she is stressed. But other than Pen VK, no more Risperdal.

 

Nancy

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