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How many of you have used IVIG for their child's PANDAS? What was the age that your child received IVIG and the outcome? Was your child's main issue tics, OCD or TS? I've read a lot about Dr. K but has anyone had the procedure done by anyone else? Also, is IVIG purely experimental for PANDAS meaning the insurance companies will not cover any of the cost? If so, has anyone had their doctors go to bat for them and get the insurance companies to okay the procedure and cover it? I greatly appreciate any information you can give me. Thank you!

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How many of you have used IVIG for their child's PANDAS? What was the age that your child received IVIG and the outcome? Was your child's main issue tics, OCD or TS? I've read a lot about Dr. K but has anyone had the procedure done by anyone else? Also, is IVIG purely experimental for PANDAS meaning the insurance companies will not cover any of the cost? If so, has anyone had their doctors go to bat for them and get the insurance companies to okay the procedure and cover it? I greatly appreciate any information you can give me. Thank you!

Hi. We've done IVIG for our 7 year old son. It has helped alleviate many of the symptoms PANDAS caused, but has not completely taken care of the problem. We definitely saw improvement (miraculously so at first) and then had an exacerbation a couple months after the first IVIG. I'm glad we did it as it has definitely helped, but I wish I had gone into it with a clearer idea that it was going to give us benefits, not necessarily a complete cure. Our son had TS, tics, OCD, anxiety, ADHD, rages, meltdowns, and all kinds of other PANDAS fall-out. We are only a little less than 4 months out from that first IVIG infusion. So, I'm assured we could still see additional healing. This is just our situation. Other people have said that the IVIG was a cure for them.

 

We consulted with Dr. K, but did not do our IVIG through him. I asked him in our consult whether it was necessary to come to him in Chicago for the procedure and he assured me that it was not. We did basically follow his protocol, but did it here at home with a visiting nurse service. By having it here at home, the bill for that first visit with 25 grams two days in a row was "only" $5500. Our DAN! doctor ordered it. Dr. K has been wonderful about answering my email questions even though we only did the intial phone consult with him. We did receive insurance coverage for the IVIG, but did not mention the term PANDAS to the insurance company. It was called an autoimmune disorder and we sent labs to their nurses for review.

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Hi,

could anyone who responds to this also let me know if their child had a steroid burst b-4 IVIG and how long b-4. Also, what was the results of the steroid burst.

We did a steroid burst 3 months prior to the IVIG and saw benefits, though not profoundly so. The changes post IVIG were definitely greater than those after the steroid burst.

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How many of you have used IVIG for their child's PANDAS? What was the age that your child received IVIG and the outcome? Was your child's main issue tics, OCD or TS? I've read a lot about Dr. K but has anyone had the procedure done by anyone else? Also, is IVIG purely experimental for PANDAS meaning the insurance companies will not cover any of the cost? If so, has anyone had their doctors go to bat for them and get the insurance companies to okay the procedure and cover it? I greatly appreciate any information you can give me. Thank you!

Hi. We've done IVIG for our 7 year old son. It has helped alleviate many of the symptoms PANDAS caused, but has not completely taken care of the problem. We definitely saw improvement (miraculously so at first) and then had an exacerbation a couple months after the first IVIG. I'm glad we did it as it has definitely helped, but I wish I had gone into it with a clearer idea that it was going to give us benefits, not necessarily a complete cure. Our son had TS, tics, OCD, anxiety, ADHD, rages, meltdowns, and all kinds of other PANDAS fall-out. We are only a little less than 4 months out from that first IVIG infusion. So, I'm assured we could still see additional healing. This is just our situation. Other people have said that the IVIG was a cure for them.

 

We consulted with Dr. K, but did not do our IVIG through him. I asked him in our consult whether it was necessary to come to him in Chicago for the procedure and he assured me that it was not. We did basically follow his protocol, but did it here at home with a visiting nurse service. By having it here at home, the bill for that first visit with 25 grams two days in a row was "only" $5500. Our DAN! doctor ordered it. Dr. K has been wonderful about answering my email questions even though we only did the intial phone consult with him. We did receive insurance coverage for the IVIG, but did not mention the term PANDAS to the insurance company. It was called an autoimmune disorder and we sent labs to their nurses for review.

Jena - Thank you. I certainly wish the best for you and your son and hope that you continue to see benefits. My son is 11 1/2 and I'm under the understanding that the older the child the less likely for a full recovery but I'm keeping the option open. Best regards. Kim

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Jena,

 

Will your insurance only cover one IVIG treatment? Do you have insurance through one of the major carriers (BCBS etc)?

 

Sam

We received coverage for 6 rounds. It is through a major carrier and we have very comprehensive coverage.

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We used IVIG for my son at age seven. He was diagnosed SC/PANDAS. He had mild OCD, but our primary motivation for IVIG was to minimize tics. He'd spent the prior year undiagnosed and misdiagnosed--being prescribed amoxy repeatedly, which had only made the symptoms worse. IVIG was very effective. Not a miracle. But the difference was immediate and dramatic for him. IVIG results lasted about two months. He never received a burst. That was not an option offered at the time (he had IVIG about six years ago). He was treated with strong antibiotics in advance of the treatment--then given bicillin injections on release. We did not know of Dr. K. IVIG was ordered by a local pediatric infectious disease doctor. We were with a major health insurance carrier. The diagnosis used on all papers submitted to the insurance company was "rheumatic fever variant". The doctor requested approval in advance of the IVIG. Insurance company did not respond. Morning of procedure they finally faxed back a form letter indicating they don't provide approvals, that all procedures were examined case by case after being submitted. We'd been forewarned it might not be covered. My son was released early the next morning. The following day a letter arrived from the insurance provider (shame on Anthem--now Wellpoint) indicating my son had been canceled from our policy retroactively four mos, citing we'd not revealed an existing condition. My son had a strep infection prior to the policy, that hadn't resulted in SC. His doctors and we appealed and lost. Our state insurance ombudsman said there was no case, unless my son was disabled or dead, even then there was a waiting list. Our lawyer said there'd only be a case against the insurance company if my son was disabled, dead, or lost a limb on account of the insurance company's decision. Our cost per IVIG out of pocket is about $9,000 all inclusive.

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We are having the IVIG with Dr K in about five weeks. Son is eight now (65/70 pounds), we did a steroid burst around christmas with a 80% reduction, continued a low does just after, bringing improvement to 90%, but it wore off quick. Tried steroid burst again in March, almost no result that time. Still working on the insurance part of it, cost will be about 10k. I will post results after the treatment...

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We are having the IVIG with Dr K in about five weeks. Son is eight now (65/70 pounds), we did a steroid burst around christmas with a 80% reduction, continued a low does just after, bringing improvement to 90%, but it wore off quick. Tried steroid burst again in March, almost no result that time. Still working on the insurance part of it, cost will be about 10k. I will post results after the treatment...

greeneyes - good luck with the IVIG - I wish you the best. To your knowledge what exactly is the steroid burst used for? Is it a marker for PANDAS and if your child's symptoms get better your child truly has PANDAS or IVIG will work better? Steroids in general will make so many things better while you're taking them and shortly afterwards so I'm not educated on exactly why the steroids are given for PANDAS. If you know please explain to me. Thank you and again GOOD LUCK. Please let you know how things go. Kim

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From what I know, the steroid burst is a diagnostic tool, not a treatment. Most people have only very short term improvement. We used it to try and give him at least a little relief from the tics, but as we found out, after the first one or two trys, it becomes ineffective. I don't know why, but was told by Dr K it is typical, he said we "cashed out" on it's usefulness. Supposidly a positive result from the burst is also indicative that there will be a positive result from the IVIG. I sure hope so! Thank you, and for sure I will post after. His tx is 6-26 and 6-27. We will have a five hour drive back on the 28th, so I'm hoping he's not feeling too bad...

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Hi,

could anyone who responds to this also let me know if their child had a steroid burst b-4 IVIG and how long b-4. Also, what was the results of the steroid burst.

 

 

My son who is 9 (will be 10 in late July) had a steriod burst last month and we are doing IVIG this coming week. Tics are his biggest problem. The steroid burst - we saw results on the second day, but not with the tics. On the second week after steroid burst, his home room teacher emailed me regarding the decrease in his tics at school, we also noticed it at home.

 

Linda

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Hi, Kim:

 

We had IVIG in October with Dr. K. Our son was 12 at that time. Saw dramatic improvement for first 3 weeks, more gradual improvement for next month, things stagnated in month 3, then he caught an infection (sinus) and things started downhill in month 4. Now, 7 months post-IVIG, he's had his 3rd major exacerbation and we're back in the "nightmare zone." Original symptoms (in Summer 2007) were tics (motor, no vocal), joint pain, muscle weakness, emotional lability, cognitive impairment. Symptoms after August 2008 exacerbation were more classic PANDAS: violent overnight explosion of OCD contamination fears, urinary frequency, wildly dilated pupils, separation anxiety, anorexia, worsening motor tics plus a new vocal tic. Third exacerbation has been mostly OCD (but severe) plus worsening of tics.

 

We were supposedly pre-approved by our insurance co, using Dr. K's diagnosis and procedure codes. However, 7 months later, they still have not processed the claim (and we had to pay up-front in full... ouch). Don't know why: every time I call them, I get a different story.

 

Have to try something, so we're going back to Chicago on 6/11 to do IVIG Round 2 with Dr. K. (Have spent 6 months trying to get a local doc to order it for us here in SW Michigan, but no luck, and we've given up.)

 

Hope that helps. Don't mean to be discouraging: a number of folks on this forum have experienced permanent improvement after IVIG. Our son just wasn't that lucky.

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