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Hello Everyone,

 

I am new to this forum. I connected with a few other PANDAS parents but thought I'd now reach out further. I was referred to this forum. Let me first say, we do NOT have the PANDAS diagnosis. I'm not sure one way or the other and this is why I write today.

 

My son has always been interesting but...I feel he was a normal preschooler with the exception of a fear of loud noises. He had a wonderful time in preschool and was never a problem for his teachers. At age 5, he presented with a touching compulsion and increased separation anxiety-- about mid way through Kindergarten. Everything he touched had to go to his nose. He developed a blister from all the rubbing. It was not because he wanted to smell things-- it was to "feel right." His Dr. at the time, felt it was just a phase. Sure enough it went away after a few months.

 

At age 6--first grade, he did not display any compulsions or tics that I can remember. He did have some issues with impulsivity-- again about mid way through the school year. They gave him the "maybe ADHD," diagnoses. We did not start meds-- we switched schools, to a smaller more structured one. Great success--impulsivity was well managed by his teachers at the new school and he thrived. He was placed in all accelerated classes and was very successful academically.

 

At age 7 and 1/2--second grade--- he developed another touching compulsion; tapping people or objects a certain number of times, retracing steps, shutting the car door repeatedly, deep knee bends to tap his knees on the ground until it "felt right." We took him to a psychiatrist who dx'd OCD. He did not think it was PANDAS (this was two years ago) because of the other issues in his history-- the anxiety that I saw about loud noises and the impulsivity we saw in first grade... He prescribed Zoloft. This was horrible. My son reacted by bouncing off the walls and becoming very irritable. We took him off right away. After about a month his symptoms started to fade away on their own and wnet completely away.

 

Very regrettably, I didn't pursue this any further. I now know that that was a mistake. Age 8, third grade-- no real problems at all --maybe some brief periods of hyperactivity and anxiety at home. But now, at age 9, his touching compulsion is back-- it just appeared one day.

 

We do have a history of strep but I don’t remember a correlation (was not really thinking PANDAS) until this time. My younger son had strep X 2 at the same time the compulsions in my older son appeared. My older son was sick too for a few days but we did not diagnose strep in him. We didn’t test him because he felt better after two days.

Now it’s been a month since the strep issue and the compulsions are already fading again. I am now just reading about all the PANDAS news and I'm wondering—could this be possible?

 

So—after all of that--- my questions:

 

1) do you think its possible despite the other issues with anxiety and impulsivity (????adhd)?

2) Since this latest round is already fading and since it’s been over a month since the strep—do I still go ahead and ask for blood tests. What if they are negative? Would it be better to wait until the next “flare up?”

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Hi drifter,

 

adhd and anxiety are also big pandas symptoms.

 

also, PANDAS symptoms can "morph" from episode to episode (kind of like what your son was doing, more adhd one year, ocd the next).

 

too bad your doc wasn't on the ball enough to get throat cultures when symptoms resurfaced.

 

That said I would go ahead and get current throat cultures on all family members (checking for carriers) as well as a throat culture on your possible pandas son. Some folks find titers helpful (esp. if the cultures are neg) but they are not always elevated in pandas kids.

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sounds like waxing and waning. I always go with the: when in doubt, best to find out. What would it hurt to find the closest Pandas doc and make an appointment and get the tests? I would not wait. Whether he has an active step or not, the tests will let the doc know if thier is something autoimmune going on. jmo

 

I've read from many other parents here that Pandas children usually do not react well with SSRIS. Which would be another reason to check it out.

 

Good luck and keep reading on here and posting. There are many very informative parents here that will be able to answer many of your questions.

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Hey - I know how you feel. We struggled with a diagnosis of OCD for a while, and tons of "no you don't have PANDAS", which I accepted for far too long. But during that time, I remember what a struggle it was for me to decide what I wanted to try, what information to read, etc. It's a maddeningly vague disease sometimes. Our daughter's OCD onsets were pretty severe & debiliting, so after traditional OCD therapy "worked" but it kept returning with a vengence, it became clear that something else was going on. A week of Prednisone was a week of heaven for us (returned afterwards), and put us on the right path. If you want a simple trial that might give you a clue towards PANDAS, try Motrin for a few days. Dose as if for a fever, and see if he is better. Keep a chart of notes. If you don't see a response, that doesn't rule out PANDAS, as some kids don't respond, but if you do see a decent improvement, then you'll know you likely have an immune issue with inflamation. good luck with this - I second the suggestion to go to a good doc with expertise in ruling in or out.

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Hey - I know how you feel. We struggled with a diagnosis of OCD for a while, and tons of "no you don't have PANDAS", which I accepted for far too long. But during that time, I remember what a struggle it was for me to decide what I wanted to try, what information to read, etc. It's a maddeningly vague disease sometimes. Our daughter's OCD onsets were pretty severe & debiliting, so after traditional OCD therapy "worked" but it kept returning with a vengence, it became clear that something else was going on. A week of Prednisone was a week of heaven for us (returned afterwards), and put us on the right path. If you want a simple trial that might give you a clue towards PANDAS, try Motrin for a few days. Dose as if for a fever, and see if he is better. Keep a chart of notes. If you don't see a response, that doesn't rule out PANDAS, as some kids don't respond, but if you do see a decent improvement, then you'll know you likely have an immune issue with inflamation. good luck with this - I second the suggestion to go to a good doc with expertise in ruling in or out.

 

Drifter -- We were in the same boat as Meg's Mom and her DD. Unfortunately, we operated under a purely OCD diagnosis for nearly 7 years before finding PANDAS and trying a PANDAS intervention -- antibiotics -- which reached our DS when all of the "standard OCD" treatment options had ceased to have any efficacy for him. I would try the ibuprofen trial, and I would gather my child's history and some basic PANDAS research and seek out another expert opinion. All of our DS's doctors initially ruled out PANDAS for our DS, too, based on their perception of the "birth" and "pattern" of his OCD, and the fact that he is entirely asymptomatic in the classical sense when it comes to strep (no sore throat, no fever), so we never knew to tie his OCD explosions temporily to strep exposure. But they've now come around and support the PANDAS part of our picture. Hopefully, you'll have a similarly beneficial experience. Good luck to you!

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Hi Drifter,

 

Glad to see you made it here :) (we talked on the med site) Hopefully you'll get some good guidance. Another note --- Dr. Bouboulis, our doc, order blood tests (not just throat cultures) on all in the family to rule out strep carriers. That would be an easy start for you. He said throat cultures are too inconclusive.

 

all the best.

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Hi Drifter,

 

Glad to see you made it here :) (we talked on the med site) Hopefully you'll get some good guidance. Another note --- Dr. Bouboulis, our doc, order blood tests (not just throat cultures) on all in the family to rule out strep carriers. That would be an easy start for you. He said throat cultures are too inconclusive.

 

all the best.

 

Thanks Adkmom! Yes- I made it here thanks to you and have started my journey (again). We are in the process of finding a doc who will at least consider PANDAS. I sent a request on the Find a Dr. website. Have not heard a response yet. Someone said it here and I saw it again on a video-- If a child has OCD, then PANDAS should at least be considered first and ruled out. I'm still not sure what to think-- but now know I need to pursue this lead anyway.

 

Thank you to ALL for your kind responses. I will follow the advice and a) ask for throat cultures and blood work on all the family members and B) keep a detailed history from now on--- plus trial of motrin

 

I so appreciate everyone here. Amazing how fast the hours fly by when you spend your time on this research and this forum. Worth every second though I believe.

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I think someone else mentioned it, but I'll repeat it because it was very important for us to get the right dx and see how treatments were working - keep a journal/log or something to track his symptoms. Keep taking notes every day even when he seems completely symptom free - you may start to notice patterns and connections that you didn't before.

 

I have a spreadsheet that I created using Buster's methodology that gives a numerical score for each symptom so you can objectively see progress and patterns. PM me if you'd like a copy.

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Totally agree. I've been keeping a journal and it helped so much before we met with Dr. B. Just so I could review it and collect my thoughts and give him a snap shot of what symptoms improved, what didn't and what was going on (with meds) at the time.

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Thank you! I agree. A detailed journal will help-- particularly because I am still very confused about the traditional "waxing and waning" of OCD vs. the “remission and exacerbation” of PANDAS/PITSAND.. Since strep is not always positive nor always the culprit it seems clear that I will have to be very diligent from here on out. I am kicking myself for “coasting” for so many years.

 

Now I wonder, even if he does have more traditional OCD/ADHD tendencies, what are the chances that in several years we'd identify an autoimmune component to all of these childhood issues. PANDAS seems like the tip of a huge iceberg.

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Thank you! I agree. A detailed journal will help-- particularly because I am still very confused about the traditional "waxing and waning" of OCD vs. the “remission and exacerbation” of PANDAS/PITSAND.. Since strep is not always positive nor always the culprit it seems clear that I will have to be very diligent from here on out. I am kicking myself for “coasting” for so many years.

 

Now I wonder, even if he does have more traditional OCD/ADHD tendencies, what are the chances that in several years we'd identify an autoimmune component to all of these childhood issues. PANDAS seems like the tip of a huge iceberg.

iceberg tip = speaking to the choir on that! :lol:

 

I cannot stand the terms wax & wane. Hate them with a passion. Those 2 little words kept my child in a *&*% place. Here is the deal. If your child is a 15 on the Y-boc score, and sometimes goes down to a 12, and other times is an 17 - that is wax & wane - could be an autoimmune contributor - more confusing. If your child is a 15 on the y-boc score, and then goes to a 28 - then you likely have somthing else going on, and you need to look at PANDAS. It's an exacerbation. If your child is an 8 on the y-boc scale and goes to a 28 - then you definitely have an issue - something like PANDAS - IMHO. There is really no reason that you can't have a tendency to OCD & then get PANDAS on top of it. That is a very bad situation.

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Dear Meg's Mom - What are these y-boc scores? What tests are these? thanks

Y-boc scores are a measurement scale for OCD. Here is a site to read more. This ones for adults. http://www.stlocd.org/handouts/YBOC-Symptom-Checklist.pdf.

 

A good therapist should be able to take a yboc to measure severity and impairment. 18 point swings are a clear indication of something way beyond wax and wane.

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Re., wax and wane versus PANDAS exacerbation . . .

 

FINALLY, our psychiatrist came to recognize that not only is the exacerbation a much deeper "trough" than typical OCD wax and wane, but also that is it much faster/more dramatic in its timing. Honestly, there were points in time in which the exacerbation took on such ferocity with such speed that it almost looked like "bipolar OCD" in our DS's case! Nowhere have I read or heard of "regular OCD" taking on those kind of characteristics, and neither had our psych.

 

That's when the lightbulb went on . . . thank the heavens!

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Dear Meg's Mom - What are these y-boc scores? What tests are these? thanks

Y-boc scores are a measurement scale for OCD. Here is a site to read more. This ones for adults. http://www.stlocd.org/handouts/YBOC-Symptom-Checklist.pdf.

 

A good therapist should be able to take a yboc to measure severity and impairment. 18 point swings are a clear indication of something way beyond wax and wane.

 

Wow, I never heard of the points swing, but dd age 7 was Y-boc 29 when we first starting seeing our psychologist, and a few months later was Y-boc 9. Guess that's the swing huh?

It's amazing how much more I know this year, than we did last year....thank god! B)

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