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Don't ever give up hope


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Hi Everyone,

I have been thinking of all of you often, but have been so busy I haven't had a chance to write. Thank God I have good news. Some of you know just how sick my 16 yr old son was last year. PANDAS was suspected at age 10 by pedi in NH and Boston Childrens in 2004 with the sudden onset of OCD and Tics and + strep culture and elevated ASO. Syndenhams was suspected too and he most likely had that too. It has been a LONG, LONG six years of seeing many experts and specialists. We traveled to CA, FL, IL, MD, MA, CT, etc for various treatments and therapies. In 2004 DS improved within 10 days of original abx and was left with OCD severe and incapacitating many times. We treated it as OCD until Oct. of 2009 when a friend told me about the "Saving Sammy" story on the Today Show. I immediately took him in to pedi and sure enough titer was 1014. We started Augmentin 7 weeks, had T&A, intensive outpatient ERP therapy (again). He had been on numerous abx's over the year and a half. In May of 2010 we have first IVIG without any improvement, In Oct. 2010 had second IVIG, Dec. 3rd, and 2 others up until March 2011. We did not see any improvement from IVIG alone. We started to see improvement in April, 2 weeks after entering the OCD Institute at McLean in Belmont, MA. DS was there for 5 weeks. He worked very hard with the ERP. The staff and facility are amazing. He was completely incapacitated before going there. He was so very sick. He had been out of school all year, tortured by OCD every second of every day. We started to see improvement within the first two weeks there. After 1 weeks at OCDI, DS's Zoloft was increased from 25 mg to 50, then week 2 to 75 where he is now. He is also on 15 mg of zyprexa, which he was on for 2 weeks before entering OCDI. He was on 10 mg of zyprexa for about 5 months before the increase to 15. He started his Augmentin day one of OCDI too. He was doing great and a new med Namenda was added on week 4. He came home 2 weeks ago today and is doing so GREAT. He is about 80% better. I don't know if the IVIG set the stage for DS to do the work he had to do there. We are having IVIG #6 right now as I am writing this. I am very worried it is going to rock the boat, but I'm worried if we don't do it he will relapse with the next exposure. It is so hard to know the right thing to do. My feeling is that IVIG may have set the stage for everything else to pull together. I don't feel DS would have gotten better with IVIG and Abx alone. I feel the PANDAS and severe OCD needed to be treated and that there are different treatments and meds for each.

 

Please don't give up hope. It takes so very long for healing with this illness. Lots and lots of prayer, treatments, experts in the different fields and perseverance.

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Joan --

 

Thanks so much for the update! I've been thinking about you and your DS and hoping you were consumed with happy, healthy things while you were away from the forum. So glad to hear he's on a good path!

 

I'm with you in terms of finding that a combination of interventions and strategies might have the greatest overall efficacy, perhaps especially for our older kids like your DS and mine. And interestingly, we, too, have found that 75 mg. of Zoloft seems to be the "magic" level. I am intrigued with what you've seen in terms of what Namenda has done for your DS, if it's possible to tease apart its impact from the Zoloft, Zyprexa and therapy. Could you see an immediate difference? Or was it more gradual?

 

All the best to you!

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Hi Nancy, I forgot you son was on 75 mg Zoloft too. That is interesting. I'm not sure what the Namenda is doing. It was added on the 4th week and he was already doing pretty good. Dr. J has about 100 patients on it and it is helping some with OCD symptoms. How are things there?

 

We're doing pretty well, thanks for asking. Our doctor is reluctant to go to off-label use of the glutamatergic agents like namenda or riluzole, but we are trying a mood stabilizer, lamictal, which is also thought to have a glutamate-modulating effect. Knock on wood, so far so good, and getting better. He's probably 85% overall and functions well at school and in public.

 

But we continue to "poke the bear" at home and in therapy sessions, trying to get at those lingering OCD anxieties. We continue to do pretty intense ERP for that; even as we speak, DS is speaking "fears" into his Iphone, creating his own "loop tape" to listen to and hopefully therefore decrease his anxiety over those fears. (Right now it's about alcohol consumption . . . mine and DH's, specifically, and the chance of "accidental consumption" on his own part! Guess I don't have to worry about him being convinced by his peers that a couple of beers won't do him any harm! ;) A dubious benefit to all this, I suppose.)

 

Again, so glad to hear you're getting good results now, and I'll look forward to hearing how your DS progresses.

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Joan. I am so so so happy for you and your son I am grinning from ear to ear. I hope your son understands and appreciates what an amazing mom he has in you. You have never given up on him and worked your tail off doing everything under the sun to help him. I hope you see lasting relief and both of you can enjoy your summer

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