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Everything posted by trggirl

  1. If you try this supplement, please report back. I have always been interested in this supplement because of the pathways it is involved with in the body.
  2. Thank you so much for this update! I have followed your posts for years and it is so good to hear that he is doing well. I also understand the feelings that come with letting them be more independent. I am trying to do this now and it is hard.
  3. My daughter was also prescribed this a number of years ago, and we also had wonderful results. I read somewhere that it may effect the glutamate system. This might be why it helps??
  4. Hi vvny I really hope you come back and post as to how it is going with the LDN!
  5. We have found things that helped, but we have not found that magic bullet yet. 1.DMAE - this is over-the-counter and really seems to help my daughter. I started very low on dosage and have stayed low. Honestly, this seems to be the key for most of her meds. If we try normal doses, we get side effects. At very low doses, we get a bit of help. 2. Amantadine - this has been very useful. 3. Vyvanse - this seems to be the best, but again, we had to back down on the dose. She takes the smallest dose available. We do get better focus at the higher doses but it brings on the tics so we stay low. My daughter is also on Propranolol and it has calmed her a bit. She was diagnosed with thyroiditis. I can't say that it helps focus directly, but being calmer does help.
  6. Hi, I have been thinking about trying GABA also. My child has mild tics. I would love an update if you try!!
  7. Hi, thank you so much for the update!! It is so good to hear success stories on the treatment of Pans! Would you mind sharing how you treated the Mycoplasma?
  8. Thanks for answering. That's just so disheartening. It blows my mind that something is right there in front of their nose and they can't see it.
  9. Has anyone been to Texas children's lately. I am wondering if they are recognizing PANS now. I took my daughter about 5 years ago and they told me it was too controversial and would not treat. I'm wondering if they have changed their thinking yet?
  10. I would love to hear about the testing and underlying disorder and her current tx regimen.
  11. At this point, I am not even sure what the connection is or even if there is a connection. In my daughter's case, it is hyper rather than hypo. Interesting info about your daughter. As another side note, if you haven't tried Lidocaine for the bloodwork, then I highly recommend it. You cannot feel a thing with the Lidocaine applied to the skin.
  12. Have you checked Thyroid levels? My daughter has high CamKII and just got back blood work that shows very high free T3 and free T4. This is actually the second time we have seen this but this time the thyroid levels are very high. I have found a few studies that show a connection between CamKII and the thyroid. I am just wondering if anyone else has experienced this.
  13. Chemar, I have one more question that is off-topic a bit from this subject. Your son was doing well on the Lemon Balm tea but I noticed you don't have it listed under your son's treatment plan anymore. Is he still drinking this and is it still helpful? Or did he stop drinking it for some reason? Thanks so much for your help.
  14. KIm, I have seen that. Very, very interesting stuff!
  15. Thank you!! I think we will give this a try over spring break.
  16. Chemar, what kind of effect did your son get from Curcumin? I found a study that said that it was a CamkII antagonist so I am thinking of trying this supplement.
  17. I would definitely print the studies for your doctor.
  18. Do you mean Camkinase II or I? There are definitely studies connecting CamK II to the heart. If I remember correctly, from what I got out of it was that it affected the relaxation and contraction of the heart. This is also one of the reasons that I made the leap to think that this might be the key to the tics (relaxation and contraction of muscles). I am just guessing though.
  19. Since Myosin Light Chain Kinase is a type of Camkinase and Camkinase II is high in some of our children, I wonder if anyone is looking at this as a cause of the tics some children suffer from? Myosin Light Chain Kinase is involved in muscle contraction.
  20. If Mycoplasma antibodies are high, how long should they stay high after an infection and at what point should they come down to normal blood levels in a "non-Pandas" person. Thanks in advance!
  21. Hi all, I thought I saw a post at some point that lists a lot of the possible things to ask for when testing blood. I can't seem to find it under the pinned threads. Can anyone help? My daughter is having an OCD episode after running a fever. We are back to the drawing board.
  22. In our case, I think Tamiflu helped. My daughter caught the flu for the last two years. The first time she was too far along to receive Tamiflu. She went on a downward OCD and tic spiral to where she was barely functioning. This year, we caught it early enough to start Tamiflu and I figured we had nothing to lose so she took it. She is having OCD and tics, but she is not near as bad as she was without the Tamiflu. I would think the Tamiflu would slow down the viral and autoimmune build-up but who knows??!!
  23. We did the 23andMe testing this weekend after having the test in our possession for several months (life just got crazy). I have not been keeping up with the news. Will we receive results?
  24. I really can't add anything except that we had a bad reaction to NAC (daughter became VERY disagreeable), and a good reaction to Amantadine if that helps.
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