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Pudgeo

Meds for ADD? for PANDAS son?

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Hi. Who is your Panda's doc? And what does he say? I only ask because, my ds7 whom was a total space cadet, and retention rate highly questionable, has shown remarkable improvement with his memory since his ivig 8 weeks ago. How long since his ivig? Any improvement at all from ivig? Dr K said that short term memory would take awhile to come back but I am already seeing improvements....

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Q, how do you measure the short term memory? Is that why math is so so difficult for these kids? We tried ridlin for our son and it didn't do anything. Also clonidine and intunive. The latter helps some with hyperactivity and rages but not enough to justify the side effects for us. Now tapering off completely after being in maximal dose.

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We have given up on the adhd meds as they have all been a disaster. I'm told that the reason is that in adhd the frontal cortex doesn't get enough stimulation. The stimulants stimulate that particular part of the brain. In pandas it's believed that other parts of the brain are way overstimulated (dopamine) so throw a stimulant in there and watch out! Of course there are those that have pandas that truly do have adhd in addition to pandas and I believe those are the ones who will benefit best from meds.

 

We tried intunive for 6 months. At lower doses it did nothing but give him side effects. (Dripping of urine all day, changed the way his food tastes, rebounded at 8pm every night , and was very sedating). At higher doses it worked for hyperactivity but only bc it was so sedating that he was nodding off in school. We also added clonidine to the mix to ho sleep at night and that snowed him, again didn't help the adhd.

 

We tried Prozac and Zoloft, both made him have suicidal ideations and was very agitating. Tht rules out stratera for us, as it has a very similar mechanism. I was time to try abilify next but to be honest, I am so much happier to have my real child's personality off the drugs and we just have to deal with the symptoms. Its sad bc those adhd symptoms really wreak has ok on his life, especially in school but I feel we have done all we can.

 

I recommend you also with your doc and commit to giving it a try. Intunive is a blood pressure med and just sort of tones things down. If the lack of concentration is mild and hyperactivity is worse, it might work for you. But it's not a stimulant and doesn't work like a true adhd med. you haut have to keep trying until you've either found the right one, exhausted your options, or given up. We have decided there is t a med in the world that can help our son, or not at least without making it worse.

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  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
      • O -
      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

    Please sign in or register to vote in this poll. View topic
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