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I know this topic had been discussed before, so apologies for posting again...

Is there any reason why PANDAS/PANS kids should not take ADD meds? I'm not referring to a general preference for supplements or ntural means at getting at ADD-related issues. I'm wondering if there is some kind of medical reasons why PANS kids should avoid the meds (the way some have bad reactions to anti-depressents, for instance)

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I would def discuss w/ your pandas doc.

 

My pandas dd has done well w/ episodic courses of OCD. We had started to see the some of the OCD was stuck ( tolerable) even when well. We started her on prozac- very low does- and it has been life changing! She has been 110%. I know she will still have pandas episodes, but prozac was a major missing piece from our treatment protocol.

 

I know it's not the same as ADD- but wanted to share- if it's been an ongoing issue I would consider trying meds

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When our pediatrician first suspected PANDAS she tried our DS, 9 yo at the time, on antibiotics and low dose Zoloft. Zoloft seemed to exacerbate his symptoms for several hours after taking (of course in hindsight we were at the height of his disease and the worst time to try) and we stopped after 2 weeks. Approximately 5 months later into treatment and feeling pressure from school we tried Adderall 5 mg specifically for ADHD inattention - did great for his focus, but sent his OCD into a flare 7 days after starting. The MD who diagnosed his PANDAS said no stimulants, it will increase his OCD (his psychologist he sees for CBT has reiterated stimulants are not a good idea). Per MD, that left us with Strattera (side effect of possible suicidal thoughts so that was out due to comments DS made at the height of illness) and intuniv. We tried intuniv for several months with little to no difference (confirmed by teachers), it did not justify the low blood pressure/heart rate side effects, we did not restart with this school year.

 

At this point we are considering low dose abilify as recommended by DS's psychologist. CBT psychologist has seen good results with abilify and thinks it may be able to help DS. We are waiting for our pediatrician to give us her final opinion after she speaks with psychologist and diagnosing PANDAS MD. We are willing to try if it gives DS some relief, help. Even in his recovering state he has mild tics, OCD and "ants in his pants".

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Stimulants (the more typical ADD/ADHD meds) usually increase ds15's tics, especially Concerta (extended release stimulant). But now that his PANS is being treated and his tics have decreased enough, it's been less of an issue for us. I do think they (stimulants) make him irritable as he comes 'down' (maybe??) which in him can also look like a PANS flare. He is now on regular release Focalin b/c that seems to have the least of above-mentioned side-effects.

 

Hasn't affected his OCD, which is on the more mild end.

 

Just one more data point for you.

Edited by tj21
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We tried 2 different ADD meds while on a 'break' from tx'ing PANS and lyme last year:

First med seemed to shock her system for a day or 2, then nothing. Psychiatrist Dr. said go up in dose (we had started low) tried upping dose 2 more times, same thing happened, I said forget it.

2nd ADD drug: immediately put OCD into nonfunctional. Very scary.

Did not work for us.

Back in treatment for lyme and co- infections with antibiotics, and ADD symptoms are very manageable-

no more pacing around the house, finishes homework, sits down and watches movies, etc.

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