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Everything posted by Indigo

  1. So, dd's sleep was great last night. But the irritability is HIGH on this stuff...she had a rage when I was trying to get ds an OT eval, it was awful!! I don't know whether the irritability will get better the longer she is on it, or if I should take her off of it. Any experiences to share with me?
  2. Lol, didn't last. Ugh. She is happier on it than the Azith, though. Just soooo hyper and won't sleep for anything!! This wax and wane pattern is beyond exhausting!
  3. This happened with us on Azith as well...although I think the "cold" could have been strep even on the antibiotic...because although I didn't get full blown strep myself, I had white spots in my throat and dd's behavior changed dramatically. Are you in PA? I'm just asking because Swedo mentioned areas of PA as being resistant to Azith--which my dd was on. Now we are switching to Augmentin ( so far, much much better, but only day one of the Augmentin).
  4. Wow! 4 hours after taking the antibiotic, dd suddenly calmed down immensely. She was a different child! How on earth could that happen so fast? It reminds me of the prednisone! I'm not expecting it to last, but wow, it would be wonderful if it did.
  5. Hello, When we tried dd on Amoxycillin, she did not do well...it made her really irritable and angry. Is there a difference with Augmentin? Since strep in this area of PA seems to be resistant to Azith, we thought we might try Augmentin next. What is the difference for PANDAS kids with Augmentin and amox?
  6. Just wanted to say that this did not work well for my PANDAS dd...it is working good for my son, though, with speech disorder. It made my dd more edgy, and then with further reading I realized it works similar to Klonopin, which is a med that she freaked out on when they tried to give it to her to sedate her for an fMRI.
  7. She sounds so similar to my dd...and we went through the same dx process...asperger's maybe, bipolar maybe, social anxiety disorder, some OCD, we even heard schizophrenia at one point when a doctor put her on Concerta and she started hallucinating. Sigh...it's such a tough road! Have you gotten titers taken lately? This will give you at least part of an answer if her titers are high...and the second answer we got was the steroid burst when our "bipolar, asperger, schizophrenic" child suddenly became typical! It was a huge eye opener for us! It is hard to know what to think and believ
  8. Wow that is so great! Will she do okay for the tests?
  9. I got it at a local store but here it is on amazon: http://www.amazon.com/Stress-Relax-PharmaG...5657&sr=8-1 I read about GABA in Dr. Amen's Healing ADD book. I'm going to try it with my son who has frontal lobe difficulties...speech and language, which is also related to ADD type 4-which includes symptoms such as mild paranoia and irritability. Also with my PANDAS dd. I wonder if Dr. Amen has seen research on PANDAS since writing his book since he has taken so many pictures of people's brains to include in his work.
  10. We use Boswelia which is similar to willow bark and perhaps the cherries?
  11. Have any of you used GABA successfully with your PANDAS kiddos? I found a PharmaGrade quick acting GABA today at the store--it's chewable and tastes good--very calming!!
  12. We use Cenitol. She takes one scoop in orange juice a day--I can use two, but haven't yet because I also give it to my son and it's expensive. Anyway, it is 4 g per scoop of inositol, 200mg of magnesium, and 800 mg of citric acid.
  13. The Inositol that we use is called Cenitol-it's a powder that I mix into juice for dd. I'm not sure how much that is doing, but I know the Seriphos that dd takes is working wonders. You can get it on amazon, btw. Dd ran out of it last week and the doctor sent some more to me and it arrived today. For the days that she did not have the Seriphos she had insomnia again, waking at 2am and being up for the day! She also was more irritable, hyper, and had a really difficult time with sensory stuff. So somehow the inositol, seriphos, and 5-htp combination are working wonders for a month now.
  14. Maybe you should try some Monistat if she has a yeast infection.... I know gluten can cause itchy bottoms as well, but if there is yeast issues that is more likely.
  15. Amy-it is something that is done in OT. You get a small surgical brush and it's called the Wilberger method (I think I spelled that right?)....it should be done every 2 hours for about six weeks along with compressions of the joints right after the brushing. I would pursue the OT through the IEP because it is really difficult to get schools to recognize sensory issues! When my kids were in Early intervention neither one "qualified" but then when I pursued OT with private insurance they were given therapy.
  16. My dd would also take her clothes off a lot and also wouldn't wear turtlenecks or let me brush her hair. It was sensory and helped a lot by the body brushing regime. When her PANDAS episodes are flaring, the sensory stuff bothers her a lot more again and I recently tried the body brushing again during one episode. I think that yeast issues can make the sensory stuff more accute to her, as well. However, the supplements that I mentioned in the other thread have helped with everything all the way around, including sensory.
  17. My dd is doing excellent for a week now, on Inositol, 5-Htp, and Seriphos. I'm amazed at the transformation and hoping that we can pulse the antibiotic now.
  18. That happened here, too, with the first steroid burst. My dd takes 250mg 1x daily Azith as well. I think it might just take longer than I expected to work...months, a year perhaps...although in listening to Swedo's talk I was again reminded of how the extreme separation anxiety was gone with the first antibiotic and never returned!!!
  19. I'm going to ask my PANDAS doctor tomorrow about the Aricept and see what he says.
  20. I wonder if Riluzole will be a treatment for PANDAS ?
  21. Oh, and we once tried to get a CTscan but it was a disaster...she had been given clonidine which made her a writing, hysterical mess so we didn't get any scans done.
  22. Thanks, Diana...I finally put her back on the Azith and she is not nearly as irritable. Very hyper, but we handle that with guanfacine. I would rather have hyper than nasty constantly! My doctor has been in email contact with Dr. K...his feeling is that IVIG is the next step but it's one that my dd is not able to take. She is deathly afraid of any sort of doctor, needle, or medical procedure. When she cut her hand and needed stitches, it was either putting her under in the OR so they could stitch them or (our choice) my PANDAS doctor gave me the butterfly bandages to take home along with
  23. My dd takes fluconazole with the antibiotics-ten days on and ten days off of the fluconazole.
  24. Hello, I have a few questions and would love if anyone has thoughts to share! My dd has been on Azith, clarith, and Amoxicillin...amoxicillin made her unbearable, azith made her rage, and clarith doesn't seem to work! I have her back on clarith just to get her off of the awful amoxicillin! Her throat tic has been really bad lately and she says her throat hurts. Especially after a stressful situation, such as Christmas, she actually appears sick and her throat bothers her! Her strep titers have been 480 and didn't move with antibiotic treatment. Is it normal for PANDAS kids t
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