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trggirl

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Everything posted by trggirl

  1. I have read many stories on steroids exacerbating tics. We have been afraid to try them for that reason.
  2. Iowadawn, would you share with me as well? I feel like the more I read and know, the better. Thanks!
  3. We are still doing well on it. Not perfect, but it does help her to follow through on her work. Several times I have thought it might be losing its effectiveness, but when we miss doses for any reason I realize how much it is helping.
  4. I really appreciate everything you share with us!
  5. I love hearing good news like this!! For those of you that did the steroid taper, did your children have tics?
  6. I haven't seen this. Thanks for sharing!
  7. Cefdinir alone was fantastic for my DD. We have not tried the combo though.
  8. I would be very interested in the doctor in San Antonio. I am excited to hear that more doctors are coming on board with PANS. I sent you a message! Thank you!
  9. Does anyone have an update on when the Cunningham lab opens?
  10. MAO and COMT also break down norepinephrine and epinephrine. My DD was extremely high in norepinephrine the first time we tested so I went down the path of looking for a drug that stimulates MAO or COMT as a possibility for treatment. I was just grasping at straws and trying to search every angle I could come up with. I never did get anywhere with that angle.
  11. Hang in there. I'm so sorry. Hopefully this "turning back" won't last long.
  12. THank you for the update! I am so glad that you are being treated and followed by the experts. It is also great to hear that they are having such success and they are so close to being finished with the study.
  13. Check out Chemar's story on the lemon balm. If you find her name and click on her link, she talks about it and the success they have had using it.
  14. Dedee, did your dd respond well to the NAC?
  15. We started homeschooling the year after this began. I keep in contact with everyone at her old school and I am grateful she is not around all the sickness that is in the school.
  16. Powerofprayer, you are right. Dopamine is said to contribute to TS tics. I personally think that in some cases of tics you have to look at the Camkinase II level as well. At some point I have either read or some doc has said that high CamK kids are usually ticcer kids. I suspect when someone figures out what mechanism is going on with that high CamK, they will figure out what is causing some cases of tics.
  17. Oops, sorry to confuse things on the D4. I had read that one of the possible reasons Amantadine was effective for ADHD was because it is a D4 agonist. I thought it strange that my daughter responded to it since she has borderline high dopamine. This was not related to the Cunningham discussion at all. It was just more of an observation that neurotransmittor levels are still an unpredictable science. Sorry.
  18. The dopamine levels are determined by neurotransmittor testing in the urine usually by a DAN doc or "outside of the box" doc. I think it can be done by blood but I have never heard of a regular doctor doing it. Regular doctors won't test it because the levels change quickly and so they feel the information is useless. I have had my dd tested several times and I just look at it as information gathering. Just another piece of the puzzle. My thinking (which may be totally wrong, it's just my thoughts) is that if I catch a super, super out of range level, I think that is something that needs to be considered. Interestingly, my daughter has always been borderline high on the dopamine yet Amantadine which supposedly acts at D4 helps her. There is so much that is still not understood.
  19. Nancy, I don't remember how long my dd had been on Amantadine but it's been at least since the summer.
  20. I absolutely saw improvement with the attention! The more I am thinking about it though, the more I feel I need to describe my daughter. I really don't think her ADD is true ADD. I think it is probably OCD that causes the ADD. For example, when she is sitting down to start homework, it takes forever to get the right pencil or pen. Then if it is a pencil she finally decides on, she has to peel the outer layer because she doesn't like how it feels. Then we think we have the pencil/pen situation settled and some other issue pops up. At this point, we are 30-45 minutes into trying to start homework. All the while this is going on, her mind is bouncing to a hundred other things. It's just one thing after another and it makes getting work done very hard. Amantadine helps her follow through. Again, it's not perfect. She still has very slow starts. But we get patches of time where she is able to buckle down and accomplish something. I said before that I did not notice a difference with OCD, but when I think about her homework in this light, I guess it is helping OCD if her attention issue is OCD like I think it is.
  21. We have not had any side effects when we take one cap in the morning. I recently added an evening dose and I thought tics might be increasing, but I can't swear it was the medication. I'm just not sure. I did back down to one a day. I do want to point out that we tried traditional ADD medications Ritalin, Focalin, and Intuniv. We had different, but terrible side effects with all of them. So far, Amantidine is the only thing that helps with the focus. It's not perfect but it helps noticeably.
  22. Yes Nancy, for us it was a focus help only. My dd does not have social anxiety and I have not noticed any change in OCD
  23. We had a terrible reaction to it. It made my dd very difficult to get along with to put it mildly.
  24. Fixit, What does your husband say about PS? Does it calm him? Help him focus? Be watchful of the combination products. We used one that had DMAE, PS, and a few other things and while it did help with focus, it also increased her tics. We never did figure out what it was in that particular product that increased the tics.
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