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Thesuzie

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    Thesuzie reacted to MomWithOCDSon in Help! Are there ANY anti-anxiety meds, etc that work for PANDAS ki   
    So sorry your DS is facing so much anxiety again! Yes, it sounds like maybe he needs some more medical intervention . . . perhaps a fresh exposure or hidden infection that the biaxin doesn't address?
     
    In terms of psych meds, if he's taking SAM-e currently, you'll need to be pretty careful about any SSRIs, since they essentially do the same thing. Also, traditionally SSRI's take 4 to 6 weeks to reach full effectiveness, and you can't just stop them abruptly, either. So I'm not sure that's a viable answer for what you hope is a more or less temporary situation. I know some people who've used meds such as risperadol and/or clonopin, which can quell the anxiety pretty much immediately, but these can be pretty "heavy hammers." At a low dose, risperadol didn't do anything for our DS, and at a higher dose, it put him to sleep.
     
    You might ask your doctor/therapist about a low dose of lamictal; we found it tremendously helpful with our DS, and it works more or less immediately. It didn't actually take away the OCD, but it gave him the ability to be more objective and less emotionally attached to it, so when his therapist or we would suggest (coach) him to let go or move past some obsession or ritual, he was more able to do it. He didn't melt down over the anxiety anymore. Lamictal is thought to help modulate glutamate, and that's been a benefit, as well.
     
    Hang in there!
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    Thesuzie reacted to Dedee in Antibiotics   
    Your physician is afraid because he / she is not PANDAS / PANS literate. If he was educated on proper treatment he would understand that your daughters brain is under attack and not hesitate to do what ever is necessary to protect it from further insult. The rages may or may not be caused by the antibiotic. It could be the course of PANDAS playing out or a herx, which is the release of toxins as the bacteria die off. You need to continue antibiotics and treat in the event of a herx. Do a search on this forum for herx and you will find some good remedies. Make sure your daughter is getting plenty of fluids to flush any toxins. If things don't settle down after a week or two you may consider trying a different antibiotic. You are right to assume that 10 days is not enough. If your physician is not helping, find someone who will. You are going to need a PANDAS / PANS specialist. Go ahead and make an appointment. You can find some names on the pandasnetwork.org page. This is not something you will be able to manage without an educated physician. As a general rule, things get worse with each infection untill you can get a manageable plan. Best of luck.
     
    Dedee
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    Thesuzie reacted to airial95 in Nightmare PANDAS/tics newbie - need help/advice   
    Steroids are a tough one. They tend to work temporarily for PANDAS kids because they suppress the immune response causing the inflammation in the brain, as well as reduce the inflammation in general. However, steroids can also have a negative reaction in many kids - PANDAS or not - that include hyperactivity, rage, and even psychosis. This is why we never chose to try steroids to treat our kids' PANDAS. I didn't like the risk of the side effects. (Although - with our son's most recent IVIG - we did have to give in and give prednisone to counteract some of the side effects of the treatment...fortunately, there were no ill effects).
     
    If it is PANDAS - it may take trial and error to get the right antibiotic. We used Azith first, and while it didn't do much for my son's tics (grimaces as well), within 2 weeks was saw significant improvement on all other symptoms. The only thing that eliminated my son's tics entirely was getting his tonsils/adenoids removed - and then they returned with a subsequent infection. When we tried an Augmentin/Azith/Rifampin antibiotic combo - it eliminated the tics entirely (which by that time had evolved into a full upper body shruggy-thing) and they haven't returned post IVIG.
  4. Like
    Thesuzie reacted to smartyjones in ART test results: Did any ART followers have THIS MANY infections?   
    sorry - no real time to reply, but YES!
    ds was, i think, the ripe old age of almost 6 at the first time. doc said somewhere, somehow his immune system took a hit and then everything else piled in.
    good luck with treatment!
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