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Dr. K in IL versus Dr. T in NJ


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Hi,

I am in Michigan and b/c we were planning on going to NJ this summer, I had someone recommend Dr. Triffiletti for possible diagnosis and treatment of PANDAS. I some discussion of Dr. K in Illinois and looked him up. It looks like Dr. K is less supportive of treating with antibiotics and the prednisone than Dr. T. Dr. K seems to be a big fan of the IVIG, whereas Dr. T seems to do the antibiotics and other treatments first. It doesn't sound like IVIG is going to be covered by insurance??? So my questions are: what are others opinions about IVIG versus the antibiotics, etc.? How much does IVIG cost? How many times does a patient need to get IVIG if diagnosed with PANDAS? Thanks for all of your help! Pat

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Hi,

I am in Michigan and b/c we were planning on going to NJ this summer, I had someone recommend Dr. Triffiletti for possible diagnosis and treatment of PANDAS. I some discussion of Dr. K in Illinois and looked him up. It looks like Dr. K is less supportive of treating with antibiotics and the prednisone than Dr. T. Dr. K seems to be a big fan of the IVIG, whereas Dr. T seems to do the antibiotics and other treatments first. It doesn't sound like IVIG is going to be covered by insurance??? So my questions are: what are others opinions about IVIG versus the antibiotics, etc.? How much does IVIG cost? How many times does a patient need to get IVIG if diagnosed with PANDAS? Thanks for all of your help! Pat

There is no single or universal answer to any of your questions. All of the treatments used for Pandas have pros and cons. None are risk free, none come with guarantees. Some parents prefer to be aggressive with IVIG early on and others prefer to start off with the less invasive treatments, moving to something else only if a milder treatment fails. It's all very personal. As a generalization, I think your assessment of each doctor's feelings are valid. Which one to see depends on which one you feel more closely matches your own approach.

 

As for IVIG and insurance coverage, that depends on your insurance and in part, on your doctor. Some doctors seem to have better success than others on appeals and on building a case for coverage. If you pay out of pocket, I believe you're looking at $8-15K per treatment depending on where it's done and how much your child weighs. How many? That again depends on your doctor - most doctors say one treatment is necessary, with some kids possibly needing a second treatment months later. One doctor feels multiple IVIGs should be done 8 weeks apart. At this point in the evolution of everyone's knowledge of the disease, no one knows the "right" answer.

 

I think you'll get many opinions and personal experiences on all of these questions. However, I think you will get universal agreement on one point - make certain your child has Pandas. Even something as common as antibiotics can be more or less successful if you use an antibiotic that's generally effective against strep but your child is actually infected with a different bacteria, such as mycoplasma or one of the bacterias or parasites commonly carried by ticks. Or if your child's behaviors are instead triggered by yeast, then any antibiotic can backfire on you. The key to any successful war campaign hinges on making sure you're fighting the right enemy.

 

Sorry this isn't more black and white (no pun intended). But being methodical and having good data is just as important as which doctor or which treatment. Best of luck with your decision.

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Hi...there is a Michigan support group you might be interested in. I just bumped it. http://www.latitudes.org/forums/index.php?showtopic=8846 They might have additional doctor recommendations.

 

What insurance do you have? Some insurances are better about covering IVIG than others.

 

We've been on full-strength antibiotics for 3+ years and have had HD IVIG twice (1.5 and 2 years after onset of symptoms). In hindsight, I wish we had done IVIG sooner. We did initially get pretty good control with Azithromycin, but relapsed with strep exposure (family members positive) and viral illnesses. Every case is different...but it does seem that many people try high dose antibiotics for a few months, and then decide if IVIG is needed. Certainly the right antibiotic got us out of a crisis situation, but we saw our baseline was changing with each exacerbation, and decided to add on IVIG.

 

PS I suspect people will pm you with certain doctor experiences (pro/cons).

Edited by EAMom
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