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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.

 

 

Im going to do a phone cosult with dr k I have to foward him some info first >Has anyone done this his secretary said my insurance should cover it does it? Info please

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I'd be curious to see comments from those who've experienced permanent improvement with IVIG (and if that's a one time or more frequent treatments). I used to correspond with a family using it monthly. Their son was still at risk of recurrent strep infections, but incidents didn't seem to cause the nightmare zone level they previously saw. Compelling concept, but pricey.

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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.

Hi Worried Dad - Thanks for your reply. I'm sorry to hear the IVIG wasn't successful your first go around but hopefully this next time will give your son much better and last results. I really hope so. Keep calling your insurance company every day and ask for management and get names each time you call. I wish you the best of luck. Please keep us updated. Thanks! KimDeL

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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.

Hi boychildsmom - How is your son doing as of today? Would you considering IVIG again? KimDel

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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

 

Hi Linda - Is your son having the IVIG done with Dr. K? Tics are my son's biggest problem as well. I've read some information that plasmapheresis is better when tics are the chief issue, and IVIG is better if it's OCD as the major issue. Have you read anything about this? Kim

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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

 

Hi Linda - Is your son having the IVIG done with Dr. K? Tics are my son's biggest problem as well. I've read some information that plasmapheresis is better when tics are the chief issue, and IVIG is better if it's OCD as the major issue. Have you read anything about this? Kim

 

Kim,

 

We are indeed going to Chicago to see Dr. K. I have not read that plasmapheresis is better for the tics than IVIG. We also did testing with Dr. Cunningham in Oklahoma and this certainly identified Pandas. IVIG is scheduled for this coming Friday and Saturday.

 

Linda

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The study that indicated plasmapherisis was better in kids with tics was a long while ago, '99. It also was one of the oldest I've seen. I don't buy into it, it was before they know as much as they do now. Dr K has been following his patients for ten years now. And as you can see from ChrisW, these tic kids are doing very well with the IVIG. It's also much riskier a procedure. Sometimes the plasmapherisis also includes the IVIG, and it is actually both in one (they clean the blood, separate out the antibodies, then add in the IG as it is returned to the body).

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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.

Brian - Is your plan an individual or group plan? If it's a group plan, you can have your HR Benefits person call the insurance company directly or they can have your broker or consultant call. That should get you almost immediate results. So sorry you haven't been reimbursed yet and that the exacerbations keep happening. Same situation here with symptoms coming back, except we are much better off than we were before the first IVIG. When it seems like it's going to be a rough day, we give our son Ibuprofin and it calms things down. It's definitely a problem with inflammation here. Keep up the faith and don't forget to post updates.

 

Jena

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Hi boychildsmom - How is your son doing as of today? Would you considering IVIG again? KimDel

 

 

He's doing well since IVIG. His SC response hasn't changed. He's had recurrences about annually, but we've not let it exacerbate like the first year. He's been GABHS/tic/OCD free about 85% of the time. Any resulting tics have been mild and knocked out w/antibiotics. We'd use IVIG again if a tic wouldn't abate. The IVIG helped return him to a baseline after an initial bad year. The clindamycin & rifampin he received in preparation for IVIG really started his recovery. We saw him emerging after a few doses. IVIG took him over the hurdle w/tic reduction, giving him a fresh start and chance for us to improve detection and treatment. If a tic isn't given a chance to start or flare up, his GABHS recovery time is brief with the right treatment. Clindamycin & rifampin remain our treatment of choice. His ID MD recently agreed to let us try azith proph. So far, so good. He's on supplements & restricted diet during acute GABHS & recovery. In between, I use a few prevention supplements & less restrictive healthy diet. Triggers can cause shortlived (couple hours) reappearance of a mild tic during recovery, while antibodies are still declining. Those spikes aren't as strong as original presentation, but can be misleading ascertaining where he's at. There's still guesswork, but he's shown patterns with recurrences and titers. Without IVIG, I don't know if we'd ever again had a clear enough view to see patterns.

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If you read the Swedo IVIG/pex study carefully they do mention that one reason that the PEX appeared to have a better effect on the tics may have been due to statistics/sampling. The IVIG group had a much lower tic rate (compared to the PEX group) to start....so while there was an improvement, it was difficult to demonstrate a "statistically significant" difference for the IVIG group. In other words, if the groups had been reversed (and the IVIG group had had a lot more tics than the PEX group)...it is possible that IVIG, not PEX, would have been found to be more effective for tics.

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Brian - Is your plan an individual or group plan? If it's a group plan, you can have your HR Benefits person call the insurance company directly or they can have your broker or consultant call. That should get you almost immediate results. So sorry you haven't been reimbursed yet and that the exacerbations keep happening. Same situation here with symptoms coming back, except we are much better off than we were before the first IVIG. When it seems like it's going to be a rough day, we give our son Ibuprofin and it calms things down. It's definitely a problem with inflammation here. Keep up the faith and don't forget to post updates.

 

Jena

 

Hi, Jena:

 

We're on a group plan. I've gone back to our HR Benefits folks multiple times (they're the ones who originally confirmed that the diagnosis / treatment codes were "pre-approved" through our company's assigned insurance coordinator), and they get the same story from BCBS that I do when I call: that the claim is in "special processing" but that no further info is required. Called our Health Advocate service, too. They helped us get some denied claims paid a few years ago when this all started. Unfortunately, they can't help either. They explained that - until there is an actual claim to dispute - they're powerless to intervene.

 

So I call occasionally, try to escalate, am told that they're investigating and will call me back with an update... but they don't. Sigh. Just one more source of stress we don't need at the moment.

 

I'll definitely let everybody know how things go post-IVIG round 2. Trying to stay positive, but it's really hard right now. Searching (fruitlessly) for ANY local doc willing to help for the past 6 months hasn't helped!!!

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Hi Worried Dad,

 

We are also thinking of having IVIG with Dr. K. for our dd6. I was wondering if you kept your son on abx after the 1st round and if so which one?

 

We also have BCBS, do you by any chance know what dx Dr. K gave and what the codes were that were submitted to insurance?

 

We have a local allergy office that does IVIG--have you checked the allergy offices in your area??

 

Sam

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Hi, Sam:

 

Yes, we've been on prophylactic abx (augmentin, 500 mg daily) since a month prior to IVIG and have never missed a dose. Unfortunately - in our son's case - the augmentin didn't protect him from some infections (sinus, upper respiratory) that triggered exacerbations. Had to go to zithromax Z-packs a couple of times in the past 6 months to clear other infections. (Augmentin seems to be widely regarded as the PANDAS prophylaxis of choice. Dr. Latimer also agreed that this was a good one. Don't know if our son's situation is unusual.)

 

As far as the diagnosis / procedure codes go, they change every year, so the ones we used last year are probably no longer valid. I do believe that the diagnosis code was in the "immune deficiency" category, and the procedure codes were for gamunex (Ig), and actual administration (1 code for 1st hour, separate code for each additional hour). If you e-mail Dr. K, he can shoot you the specific codes he and OBSC are using this year.

 

The allergy office is an interesting idea. Never pursued that, because I figured this particular diagnosis would be out of their comfort zone. Heck, we've tried every other kind of doc... might be worth a shot!

 

Best of luck to you with IVIG. Dr. K seems like a good guy, and he has a high success rate. Still hoping our son will eventually be another one of his successes!!!

 

 

Hi Worried Dad,

 

We are also thinking of having IVIG with Dr. K. for our dd6. I was wondering if you kept your son on abx after the 1st round and if so which one?

 

We also have BCBS, do you by any chance know what dx Dr. K gave and what the codes were that were submitted to insurance?

 

We have a local allergy office that does IVIG--have you checked the allergy offices in your area??

 

Sam

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