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Everything 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 wor
  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. Not sure if you all saw some of the information out on this... Here is an article where PANDAS is mentioned in the list of conditions that it helps. http://www.dustysplace.org/docs/nax.pdf It is talked about in this blog for PANDAS: http://drkurtwoeller.blogspot.com/2009/02/...be-related.html Has anyone used this sucessfully?
  4. Any updates on using ACTOS? My doctor mentioned it to me today. First, he wants to try nitrexone. I am interested to know if any PANDAS kids have had success with either of these.
  5. 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.
  6. Lacy, would you send me the contact information for that doctor? Did you call or email? I am wondering if maybe she takes my insurance.
  7. EAMom--do you give Advil for sleep as well? And have you found any dye free Advil?
  8. I am studying to be a marriage/family counselor. I don't think I have any OCD stuff, but I have some sensory issues with certain noises and fabrics annoying me.
  9. What behaviors are you seeing as OCD?
  10. 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.
  11. Lacy, have you found anything to help with the rages yet?
  12. My dd is 7 and 72 lbs. and I give her 5htp several times a day, along with inositol and Seriphos. The Seriphos is wonderful for sleeping.
  13. Yes, we use Tenex or Guanfacine for ADHD. We had to be very careful, though...many of the more recent meds made dd very very angry and even gave her hallucinations.
  14. Thanks...I sent off an email. Is this going to be for the local news or a larger piece? I'm so glad that people in the media are finding out about it!
  15. 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.
  16. So, is this being used for PANDAS as well? We use Boswellia, perhaps that is similar?
  17. Thanks!! If you don't mind sharing...what is a typical dye reaction for your kiddos?
  18. It just crossed my mind this morning that I know that dd reacts negatively to dyes...and her Azith is bright pink/red!! Is there such a thing as dye free antibiotics?
  19. My dd experienced hallucinations at the height of PANDAS (when I had recurrent strep), however, she was on Concerta at the time and once she was taken off of it, she did not have any more.
  20. 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.
  21. EAMom, have you been able to stop the Azith eventually? I know they say to use it "prophalactically" but what does that mean exactly? I haven't had a point where dd does well more than 5 days off the Azith, and it's probably still in her system then...then all the PANDAS symptoms start coming back.
  22. Our experience was exactly like Worried Dad described...makes me wonder why we all keep going with these antibiotics!!
  23. 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.
  24. After dd was on Azith every day for several months, we began to pulse it, 10 days on, 5 off. But then she was exposed to strep and it threw everything off.
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