Joan Pandas Mom

Thanks Vickie. I'll look into it further. This is a research study. However, it has lost funding and therefore there is fee to run the test. Last I heard it was $400. The ideal is to have this test done during an exacerbation, prior to a steroid burst to get the most accurate results. Here is her email if you would like to request a kit to be sent to you for the test. You would have to send the blood back to her to have the test run in her lab. She would then forward you the results. Madeleine-Cunningham@ouhsc.edu

My 15 1/2 yr old son has had PANDAS since he was 9 but only on the right diagnosis since October 2009. About 2 1/2 months ago a local Neurologist asked me if a diagnosis was missed, Syndenham's Chorea. Two days ago, I found a video tape of when my son started having symptoms "overnight". He clearly had Syndenham's. He had the piano playing fingers occasionally, constant movement, little dancing, facial gimmicking, looked like he just wasn't there. I e-mailed Dr. T. He said he wasn't surprised and asked if he has had the Cunningham Test and an echo. I am waiting for the hospital to call me back with the echo appt. What is the Cunninghams Test? Also, what is the CAM Kinase? Are IVIG effective with Syndenham's too?

I'm confused, once again! My friend, whose son is a carrier told me that her pedi told her he wasn't contagious. She said even if carriers are put on ABX's for a month they won't get rid of strep. Is this true?

I'm sorry, I misunderstood the question. I don't know about play therapy, Dr. Storch treats pediatric OCD.

We went to a great one in St. Petersburg, Dr. Storch at University of S. Florida, All Children's Hospital. Good luck.

My son's wants to go to his friends (and sleep over) who's brother is a strep carrier. His brother is away at school but was probably home recently for break. I told him he can't go and he can have his friend over to our house. Am I being too protective here?

I just called my doc 2 days ago and asked for these tests too. I also asked to run mycoplasma too. I asked my doc back in Nov. and asked a doc friend of mine if my fam should have these done. They both told me no, it wasn't necessary. Thanks so much for this post.

Count me in too. I am in the mist of this, and have been for the past 6 years, but now on track. We are meeting with Dr. T. this week and phone consult with Dr. K next month. I would love to help raise money/fundraise for PANDAS parents too. Please let me know how I can be of some help. I'm not good at organizing a plan but am good at implementing one! My son according to Dr. K is "cured" - I really don't like throwing out that word - Dr. K is his primary physician now. I'm not a doctor and I can only share my story - but if you have a true Pandas child - it is a treatable disease...and you can get better. Dr. K doesn't use IVIG for all cases - I would just like to point that out as well - but in the cases that he has used IVIG he has had huge success... I'll follow up tonight!

My S was on Abilify for almost 1 year at 12 years old. It may have worked for a few months but made him REALLY irritable, moody and rude after a few months of use. That wasn't my son. They were definitely side affects of Abilify. Chances are very good that with the rifampin and the zithromax your child would have a neg. strep test anyway. How long has your son been on these medications? What I wonder is if the abx's are resolving the symptoms that the other meds were prescribed for, might you be seeing SEs from those meds?

Vickie, I missed the posts on Singulair. Why is it a red flag and thanks for that bit of info. I have given it to my son in the past but will switch to Claritin.

Does anyone on this site even use SSRI? I know Dr. Murphy published an article stating in some cases they can make PANDAS worse. Dr. Nicoladies took Sammy off SSRI because of this. We went the SSRI route for 5 1/2 years without any results. Is anyone using them for PANDAS? Do they work?

Why aren't Dr's T, L and K on this list? From what I have been reading here, from PANDAS parents, is that Dr.'s T., L., and K are the most experienced, knowledgeable, educated in this area.

It is so great to see the rituals shed one by one. My problem becomes keeping up with the ERP and homework. My son just stops doing it. Refuses to do it and within weeks he is really bad again. His latest obsessions are about God. They are really hard for him to work on.

I'm so glad you have found someone good. It is hard. My S experiences seem a lot like yours. We did try the inpatient in Wisconsin for 1 DAY. I took him out after the first night there. You are right. It was way too traumatic and stressful. I have heard very good things about it, but it wasn't the right place for my S and it wasn't strictly for OCD. My S responded well to, as you said, the one-on-one. The 3 week outpatient programs we have gone to are one-on-one. I'm not sure which programs you're speaking of but would certainly be interested in some referrals. In general, no, not now, anyway, because he's in such a better place these days and the OCD isn't preventing him from living his life anymore as it was prior to the abx. At its worst, though, we did try an outpatient program at a local hospital which was a dismal failure; it wasn't strictly for OCD or anxiety, though that was one of the ailments the program was supposedly designed to address. Unfortunately, it didn't, and we pulled him out after one week. The only other program I'm aware of in our area is strictly an inpatient one held in Wisconsin, specifically for kids with OCD; I just think that would be traumatic for him, even at this stage. In general, I'm a little wary of the heavy-duty ERP "immersion" programs, at least as I've seen them represented in documentaries and talk shows, because they seem very heavy on the "Exposure" but very light on the compassion. DS has always responded well to one-on-one, so even though this ERP therapist can be somewhat confrontational and certainly insistent at times, he does it with kindness and compassion, and he's building a rapport with DS so that he trusts in what the therapist is trying to accomplish. I'm not sure he would feel the same way about a group program because I'm not sure I feel the same way about a group program. Does that make sense? We are, however, considering an OCD camp for teens that's held every summer outside of Seattle; I hear good things about it, and it is only a four-day thing, so it might not be overwhelming for DS.

I'm so glad he is improving. I too think ERP works. The first time we went for extensive treatment in 2007 for 15 days, my son came back a 9 on the YBOC scale. He started at 35, completely incapacitated with it. Coincidentally he had been on an abx prior to going for a sore thorat. My son had been treated for my years as regular OCD too, although his had a Post. strep and 471 ASO titer when this all began. ERP does work. Good luck with your continued success. Our son had been diagnosed with regular old OCD for so many years before we discovered PANDAS and abx, it seems inevitable that some of his OCD behaviors are now essentially "learned," and I just don't think that, even with the vast improvement the abx is bringing to the table, he's going to be able to shelve all of them entirely without therapy. He had been doing cognitive behavior therapy (CBT) for the first 4 years or so of his OCD diagnosis, off and on, and while it seemed to help him quite a bit during the "waning" periods, when he was "waxing" or, we now believe, in exacerbation, it didn't help much at all. Honestly, the only service at that point was the guidance it gave US as his parents to know to try and steer him in the right directions, coach him, encourage him, rather than always lose our patience and barrage him with our frustration. We began the ERP shortly after we started abx, having found this therapist through the OCD Foundation's web site. I have to say, this has been really terrific for him. This therapist helped us wean him back into school full time, and through the sessions and the homework, he's helping DS confront and dispense with some of the lingering OCD behaviors, one by one. I would highly recommend it because I think this skill set can help them not only in their recovery, but in getting through another exacerbation should it come (though, Lord willing, it won't!).

Have you considered any of the intensive, outpatient 3 week programs?

My son is a similar age as yours and MomwithOCD son. I really need to start the ERP again. We had brief periods of success with it in the past. We went to Univ. of S. Florida to Dr. Storch, Dr. Murphy is also there but we didn't see her when we went last year because PANDAS wasn't confirmed for my son until Oct.2009.We also went to Raymond, ME to Dr. Fitzgibbons and Westwood Institute for Anxiety with Dr. Gorbis. They are all excellent. I just can't get my s to continue when we get home from intensive treatment and it creeps back in. His titers are still in the 700 so I have been holding off on the ERP, but rituals are increasing like crazy.

Thank you for your input. This is really helpful.

My son is 15 too. Is it the older they get the harder it is to get rid of the antibodies? You do the IVs at home? Do you see Dr. K? We do it monthly.It isnt that its painful its an IV .We do 1g in 4 hrs every 21 says.I have seen GREAT improvment.Way less rages way less everything.My son is 15 so I didnt have much choice. Oh we do the IVs at home Melanie

This is so wrong. How can we change this?

That's a good idea. I'll try that with insurance. What is an underlying immunological problem?

I agree. There information is so dated too.

Has Pixie had a T&A? I hope you are back on track soon.

I have been hearing more about glutemate and PANDAS. Thanks, I'm going to read this later.

For those who have had IVIG's would you highly recommend it for others considering it?