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Everything posted by Indigo

  1. Michelle-we use a doctor in PA who talks to Dr. K about how he handles things.
  2. My dd reacts to chocolate milk as well! Even organic, corn syrup free chocolate milk! She really enjoys the Horizon organic Vanilla milk, though, with no behavior issues. That's what we get for the kids at Starbucks. We are gluten free because we get physically sick with gluten ( our whole family) but I haven't seen gluten affect behavior here, although I know in others that it can cause raging and whining.
  3. I believe we saw results on day two and dd was really "normal", meaning she slept great, was sweet as pie, was quiet, no hyperactivity, no sensory issues, no raging. It might depend on the dose, too, perhaps.
  4. We haven't tried augmentin...is this really different from Amox? I will have to ask our doctor...she's still on Amox with the prednisone.
  5. I talked to my doctor today and he thought that we should go back on the prednisone to get her through the holidays. That's a huge relief for me because she responds so well to it, but I'm a little concerned because prednisone isn't supposed to be a treatment for PANDAS. Any thoughts?
  6. My doctor changed dd's Azith to Amox this past weekend. She had an excellent three days on it until Monday when she fell apart--huge meltdowns, raging, it was awful! At the end of the day she admitted that she snuck a piece of candy out of our room, which had corn syrup in it. Now it's Thursday and she is not raging so much, but crying and acting like a two year old, using a "baby" voice and just melting down at the slightest thing. Her sensory issues are out of this world right now and she's more "autistic" than I have seen her in a long time. I can't figure out if this is residual effects of the corn syrup or if it is the Amox. Because at first the Amox seemed to be doing excellent--she even had two days where she slept past dawn! Any ideas for me?
  7. My doctor wants to try Amoxicillin for her now...anyone have success with that anti for PANDAS?
  8. So, is the benadryl something that is not good for PANDAS kids or for everyone to take so often? I thought it was relatively safe in general...we've tried melatonin and Benadryl and they work about the same to help her to fall asleep. But she is up before it is even daylight outside and then is cranky after 10am.
  9. Was that just after a regular dose (like one pill) of it?
  10. Is there anything that you give to your PANDAS kiddos to help them sleep?
  11. My doctor told me that Azith makes some kiddos angry and "nasty"...we've had this experience on it and I'm switching back to clarithromycin tonight. However, dd's strep titers weren't touched on the Clarith...it's been a very rough month here.
  12. Hi, Can you tell me more about what bethanechol is? I have a wonderful DAN doctor who would probably help me with it...is it a prescription? Ds's issues are speech articulation. It was interesting because he had dental work done and was on an antibiotic for a tooth infection. His speech actually improved on the antibiotic and then got worse 2 days after the antibiotic. First our doctor wants to treat him for yeast--can this cause speech issues? And then we are going to get his strep titers to make sure he doesn't have PANDAS like my dd.
  13. I've been contemplating using garlic this week with dd...glad to read that today! It helps me so much to stay well and I was feeling it might help her....I'm unsure of how PANDAS flares for colds and viruses, as well as for strep. Can you explain this to me?
  14. I definitely spoke too soon on that one. The raging and screaming back at me is just awful. I'm so upset tonight, I just feel like this is so out of my control and there is no solution. She has intense fear and reactions to any sort of doctor or hospital or prodedure, so it really leaves IVIG out of the picture. Her throat tic has been terrible this week and it always correlates to the hyperactivity, the OCD with her schedule, and the raging. I wish the anti's would work for us!!
  15. Yay!! She's doing excellent so far on the Azith!!! I'm seeing the child we saw on the prednisone burst.
  16. The nurse forget to send for the ASO titer, so it was the DNABase titer and it was 480, the same that it was last time (the first time) we checked them. I think this was about 2-3 months ago. I don't know the last time that she had strep because she hasn't had a positive strep test or infection since she was 2 (she's now 7). She does react horribly though when any of us have had strep, but no one has been sick here in the past 2 months.
  17. We got her blood work back and her titers are the same and very high, even on the clarith. We switched to Azith last evening. We've had an awful week...dd hurt her hand climbing a tree and we had to go see our local, non-PANDAS doctor and we got one at the practice that I always try to avoid. Dd is hysterical for any sort of procedure so this was no different. The doctor was so rude and disgusted with her and sent us to the ER to put her under in order to get stitches. We didn't go, we went to our PANDAS doctor instead the next morning and he showed me how to apply glue and strips across the wound at home. He was so caring and understanding and said that it is to be expected with her PANDAS diagnosis. We also did the dentist for the first time this week and the dentist was very angry at me for not getting x-rays, but I didnt' want to rock the boat any further since dd already had miraculously sat to get her teeth clean for the first time in 7 years. Again, he wanted both my kids to go under at the hospital to get more work done, but our DAN doctor is giving us supplements for rebuilding the teeth instead. The medical field other than our PANDAS/DAN doctor has proved over and over again to be so cold and callous towards my daughter because she doesn't comply easily. Anyway, Advil is helping right now to keep her calm and off the singulair she is doing much, much better. But with the strep titers so high, it explains why she's still symptomatic, I think.
  18. I'm wondering why raging is not seen as a symptom of PANDAS and if most of your kiddos have raging...and what has helped! When I first read about PANDAS it was in Dr. Kenneth Bock's book and he describes rages in a child that were so similar to my dd's. That's what led me down this path to PANDAS...after being on anti's now for a couple of months...and trying prednisone, worked!, and now waiting for dd's second bloodwork, the raging and OCD are what remain. The raging is getting worse, again. It's scary, draining, exhausting, and I'm so upset today! The separation anxiety has not come back since we started anti's. But the needing everything to be the same all the time every day and if not questioning and worrying and questioning again...I guess this could be considered OCD? I'm feeling quite lost. What exactly is it in the brain that is causing the rage attacks and what do I do about them? Oh, and what has changed this week is just that she has gone off of the diflucan for the 10 days off, she'll go back on on Wednesday...I hope this isn't contributing, but I don't know. The singulair could be contributing, too, not sure about that either. Some parents have said singulair works for PANDAS and I've read others say it causes mood changes...it seemed to work at first for dd but now I don't know if it is contributing to it or not.
  19. Hugs...we're at a very similar place right now.
  20. We were able to get off all psych meds once we started the clarithromycin. Singulair has helped tremendously, almost to the point of the prednisone, at least for part of the day. She still has "break through" days though where the PANDAS symptoms come through and it's awful. But not any different than how she was on risperdal, which did nothing to help her except slow her down.
  21. My dd still has symptoms on Clarithromycin...there doesn't seem to be a rhyme or reason, but she'll get really edgy and then her throat tic starts again and she screams at us...I'm at the point where I'm not sure the anti is doing anything at all. She has been doing quite well on Singulair now that she gets 20mg a day. I also give Boswellia and diflucan. We're considering the subcutaneous IVIG that we can do in our doctor's office, but I'm hesitant. We just had a blood test Sat. to check strep titers, thyroid, and IGA allergy and I guess to check to see if she has IVG issues or something so it will be easier with insurance. After the prednisone was so successful our doctor is pretty convinced it is autoimmune.
  22. So even if most PANDAS symptoms cease after 18-20, since adults can't have it, the anxiety stays for life?
  23. Has anyone used nutritional therapies succesfully for speech issues? My son has severe speech and language disorder. I did take him to see a DAN doctor but he felt that it was most likely neurological and we needed to pursue an ENT and posssible neurologist. Even if it is neurological rather than an allergy issue or something, is there something that I can try? I tried CLO with no success in the past.
  24. Hello, Has anyone heard of PANDAS affecting speech? The reason I am asking is that my son had scarlet fever was he was 18 months old which turned into mono which lasted about 6 weeks. He never really recovered from that...after that he was given an autism diagnosis which was overturned by a psych evaluation who said that the speech articulation issue was what was affecting his social skills. A Ped found that he has severe chronic allergies which may be affecting his hearing. A speech therapist told me that he sounds to her like his tonsils and adonoids are swollen when he talks. We have been waiting for an appt. with dd's doctor (who helped me find the PANDAS in her) for months and he has an opening tomorrow for ds. I'm going to bring up the possibility of PANDAS for ds...he also has an eye tic which started after the scarlet fever and he has always done things like lined his toys up, likes doors and gates to always be shut and must do it himself, etc. But he's very sweet, social, no tantrums, etc. He just has difficulty articulating words although he is constantly trying to talk and is willing to try over and over until the person understands. He has been on allergy medicine for a month now, but it hasn't helped his speech much. He is always telling me his ears are closed and trying to clean them out himself. So it could just be allergy issues and not PANDAS. Oh, and he has severe separation anxiety. But he's only four, too.
  25. I have one daughter with PANDAS who was immunized up until a year...no MMR. My son was never immunized. My son does have an eye tic and speech articulation issues due to allergies most likely.
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