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Indigo

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Posts posted by Indigo

  1. Wow, I am shocked at how fast we are seeing improvement!

     

    Day 1: Hyperactivity in the morning...by afternoon, dd took a nap, and woke up very calm. OT said her social skills were excellent that day and that she really did well in therapy. Afterwards, she managed to get through a trip to the grocery store with no behavior issues, it was wonderful!

     

    Day 2: She is so happy!! She told me she feels so calm and happy today and she felt so angry before this medicine. This is just like she was on the steroid burst. I'm thrilled. Waiting for the other shoe to drop and for it to stop working, but I'm thrilled today!

     

    Dd is on a pill form of it and she takes 3mg. I give it to her at 8pm and so far she has slept through the night on it.

  2. Thank you pmoreno....do you have a link to that yahoo group?

     

    I am starting dd on this tonight. We have the pill--made by a compounding pharmacy. The one thing I am worried about is it affecting her sleep negatively--have you heard of this happening? She already has a hard time sleeping, so that wouldn't be good!

  3. my dd had akathesia and serotonin syndrome on lexapro, so we had to stop it after 2mo. Anger, akathesia (inner restlessness, wanted to be upside down a lot), dilated pupils, irritability were all symptoms from the lexapro

     

    It *is* hard to tell this from PANDAS! Do you know if Tenex (guanfacine) can do this as well, or does that not affect the serotonin? We had tried zoloft which seemed to do that, but haven't tried prozac. Might be worth a try for us.

  4. I think it's important to remember that anything can set the kids brains into the cycle of getting upset and then they just cannot calm themselves down. As hard as it is to take this, they have to rage it out and exaust themselves. PANDAS affects the brains ability to calm down when met with a stressor. I would not punish her for this--I'm sure it must be terrifying for her.

     

    I would support the idea that others have mentioned of trying Azith. For us, dye free Azith is what helps the most.

  5. My dd walked and talked early, and never slept from the day she was born. I think the PANDAS started with her when she was 2 and she was in the hospital for Rotavirus. She was never the same after that, although I have no idea what that has to do with strep. She was on antibiotics a couple of times around that time of her life, but never had a strep diagnosis.

  6. We used prednisone and I'm not sure of the dose.

     

    I agree on the psych meds!! The only med that dd is on besides the Azith now is guanfacine for hyperactivity. She has in the past been on everything from Risperdal to Lithium to Strattera to Zoloft and the list goes on...sigh. She's only seven!!! The diagnosis that we heard was possible schizophrenia which prompted the Lithium prescription-I took her off after 2 weeks...this was at the time that I had recurrent strep throat!! When we saw a DAN doctor I finally was able to see the strep/behavior connection.

  7. Dd has this issue on Augmentin, which I am stopping today. Is she on any other meds (adhd, antipsychotics)?

     

    We homeschool dd, and even with homeschool, I have not been able to do more than one or two things with her. I have had things set up...like projects, clay, writing exercises, etc. and we haven't been able to get through more than one or two things this week. We even had to cancel her first OT appointment today because she just can't handle it. After a really good month, this just is awful.

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