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Scared...IVIG recommended


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My son Isaiah just got diagnosed with PANDAS in May. His pedi does not know much about it, but is willing to learn from the information I send to him and such. Isaiah had his first strep infection in Sept. 2009, he then had strep 6 or 7 times in a 7 month period and scarlet fever once. His tonsils were removed in June of 2010 and symptoms worsened, however, we didn't know that it was PANDAS at the time. He has anxiety, OCD, he is very emotional, has started developing a dry cough/clearing of the throat (vocal tic?!) and some aggression. Since May he has had 2 rounds of Cephalaxin for 2 weeks each time, however his ASO titer is still very elevated, 580, 361, 552. They have not done much other blood work besides that. We saw a pediatric neurologist today and he is recommending IVIG. He stated that we could also try an abx for a month, but that it seems Isaiah has a strep that has been very resistant for awhile. I've always thought of IVIG being a "last resort" type of thing and it terrifies me. Isaiah is 5 1/2 years old and getting ready to start kindergarten next week. Does anyone have any advice on this treatment? Is it too soon, or is it worth a shot? ANY advice would be greatly appreciated right now as I am truely unsure what to do. Thank you so very much!

Tiffany

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From your brief description, it's possible the infection isn't cleared and I'd personally do more aggressive antibiotics for at least a month before considering IVIG. I'd also test for other infections during this time. An active infection (of strep, mycoplasma, lyme, etc). will hinder the effectiveness of IVIG and you may not get lasting improvement until the body is infection-free. If you decide to test for lyme, I strongly recommend using a lyme lab, such as Igenex. Standard labs don't look at the lyme-specific markers (for reasons too long to explain in this post) that specialty labs look for.

 

We have done it all - Pex, IVIG, steroids, CBT and ERP therapy. Until we treated the underlying causes, the big gun treatments didn't give us lasting remission. I would hold off on steroids until you've tested for other infections. They did give us a great window of reduced symptoms, which was a break the family really needed. But it didn't last and may have helped the infection.

 

I know how frustrating this is trying to work with your local medical professionals. You may want to consider either an integrative doctor, a lyme-literate doctor or a Pandas Dr who's willing to test/treat beyond the traditional norms of strep. Best of luck with your decisions. It isn't easy, no matter how old they get.

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We just finished our second IVIG for my seven year old daughter. I am all for IVIG and believe that the risk of not treating PANDAS is worse than any risk of IVIG. However, I also believe that it is vital to aggresively address the infection componet before anything else. Just from what I read it doesn't seem like that has been done. It is not uncommon to do three months of antibiotics before moving on to anything else. I applaud your neurologist for wanting to be aggressive but in order for IVIG to work, the infection needs to be under control. My suggestion is to go to one of the PANDAS specialists, but in the mean time I would get him back on some antibiotics and see how he responds. Best of luck.

 

Dedee

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Thank you all so much for you thoughts and opinions. I truely appreciate it! I decided to go with my gut on this one and try antibiotics first. He's only ever been on Cephalaxin for 2 weeks since being diagnosed. So I asked for Augmentin and he is doing a month long course, THEN we will check his titers again and see if it helped the strep infection. If need be we will do IVIG at that time. He's never had any other testing besides ASO titer, CBC and CMP. I keep asking if they need to check anything else, but they say no, if anyone can tell me if there is anything that I should really push for I would appreciate it! Thank you all again, your support means so much to me! Also, he got a referral to Dr. Ferri at Seattle Children Hospital, wondering if we should still make that appt for their first opening in Nov? Again, thank you all so much!

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