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StillHopeful

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  1. Thanks for the update tj21. Glad it is helping your son. Interesting that they sent you a new bottle. Keep us posted. I am hoping one day my son will take the cbd oil for his OCD.
  2. Hi T Anna - Just wondering how it is going with the CBD oil? Are you still using Bluebird and can you share your son's dose and weight? My son tried it once but hated the taste. Are you still using capsules? Thanks for sharing.
  3. Hi Keri -- I am also exploring options in regards to the mouth guard. If you are near the NY area you may be intersted in a study that Weil Cornell is doing in conjunction with a dentist in Suffern NY. If your child qualified it would be free. You might also want to find out more about PANDAS/PANS if you are looking for triggers (strep, viruses,lyme, allergies, etc...). Good luck!
  4. Hi -- I sent you a PM with our phone number. Please call us when you have a chance. Just wondering what you thought of the Dr. in VA and the Dr in MA (near you). The Dr. In VA wants a lot of money and I am worried about taking a chance. I am going to contact the dr in MD as well. There is a study being done in NYC so I am looking into that too. Also, wondering did your son's diagnosis change due to the use of the mouthguard for ex, did it lessen the vocal tics? Thanks again!
  5. Thanks for the reply BigAl. I have a lot of questions... Up to the point that the mouthpiece broke was your son ticing at all? Did he have vocal tics that diminished over time? My son has vocal tics and cursing so I am hoping it can help with that Do you see this as a "cure" or more like eyeglasses (when they are off you can not see well)? Did it help with any other symtpoms like OCD or attention issues? I am glad it is helping your son. Too bad that it broke but hopefully you are on the right track now. My son needs braces and I am hesitant to get them at this point. I sent
  6. Hi Bigal, I was just wondering if your child continues to use the mouth guard and if it is helping him with his tics? Thanks!
  7. Looks like there are multiple ways of dosing. Short courses of 5 days and then longer tapers. Thanks for your replies.
  8. Hi - I just recently started my child on a steroid burst. It is not a taper. I was wondering if you could tell me how much you used and how big your child is as a comparison. I do not know if my son has lyme and this is a concern to me. He is not on any other medication at the moment. Has been on several abx in the past that did not help much - Zith, Aug, Biaxin, Doxy. Thanks!
  9. My DS's original trigger was strep. He has not has strep in a while and his titers are with in normal range but he still has lots of anxiety, OCD and tics. The doctor says it is the myco that is causing it and that it is hard to get rid of the myco. His IgG myco numbers have gone up slightly (w/in 10%). He says the band 41 could be myco and that I may want to pursue additional lyme testing. He also said that they antibiotics that I have been using would also work against the lyme. I don't recall my son ever having walking pneumonia. Thanks Rowingmom. I am going to read that book.
  10. DS13 dx PANDAS has been IgG positive for mycoplasma and band 41 for about a year now. Just wondering what others have used to successfully eradicate it. Antibiotics, supplements, etc?? We have tried augmentin, biaxin and doxycycline. Thank you!
  11. My son didn't cooperate with the inositol and I was having trouble with increasing it up so I stopped. He also is hyper sensative to taste. What seems to be working is NAC. My 12 year old is saying and doing things that normally give him anxiety and he also likes that he has less congestion/mucus in the morning. He can get obsessed with it in the am and gags on his toothbrush sometimes. For my 15 year old, it is really taking the edge off of his night time anxiety. So far, so good. Keeping fingers crossed.
  12. Very interesting!! Love good detective work! Did 23andme give you a report re this info from 23andme or did you have to research or hire someone to decipher for you?
  13. Hi - Is this it? http://www.nysota.org/node/334
  14. Allie - Can you continue what you are doing w/ giving it in small amts? If you are not seeing any adverse reaction then I would just continue. I messed up the first time I gave the methyl B12 to my son. I gave it w/o the folate which caused the bad reaction. I have held off giving him any of the Bs until the end of the month when he is off from school so I can observe him better. I did start him on NAC which may be helping w/ anxiety/general moodiness.
  15. Allergies can provoke an auto immune response I believe. We are towards the end of an elimination diet with my son who is 15 yo. He was Gluten, Dairy, Soy, Chocolate, Peanut, egg, Pea, artificial color/flav/preserv, floride free. His behaviors did not change for the better when we eliminated everything. In fact, he started to tic more. Dr thought it was withdrawal (food addition). As we added in dairy, his anxiety has possibly gotten worse. I am taking him off dairy again and then will re-introduce it. Jury is still out. There are a lot of people that believe in GF/DF diets and
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