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Sethsmom

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  1. Hi! In my experience you need far longer then 5 days. Mycoplasma is insidious and can become intercellular. My son is on biaxin which was far more effective then azithromycin. Doxy is also a good antibiotic for mycoplasma. Have you done any blood work for immune system? It turned out my son had an immune deficiency as well and has been on prophylactic antibiotics for a year now. Hope this helps!
  2. Marcy, We see Dr. Williams out of Mgh in his private practice. We are on a waiting list for Dr. Sharf, a neurologist at Mgh. We have an appointment with Dr. Trifelleti as a second opinion as well next week. I am interested in Dr. Gellar as I had read about him and think hes heading the T force geeen study out of Mgh. Our son was accepted into this study out of the Nashua site. I wish I could tell you more about any of the doctors you mentioned but we are in the same boat with trying to tease out the best alternative for a second opinion. We like Dr. Williams but as you say our son is in a situation that he has not really seen. We are on the fence about kerping the Dr. Trifelleti appointment as there are mixed reviews and we have been to so many doctors our son is burned out, a 4 hour trip to get there is dissuading us. Do you live in Mass? If I get more info I will pass it on. If you do please let me know as well. Good luck with your son, I understand the challenges of trying everything to help what feels like an impossible situation. Wishing you much luck in your search! Darcie
  3. Thank you so much for your input and support! We are now at 3 weeks and 2 days with no talking. He tics in his sleep, when he can sleep. The doctor is going to give him a different antibiotic and try a steroid burst. We have abilify on standby but really don't want to use it. Seth is weepy and sad, he has not been able to go to school this entire time. We do give him magnesium but I'm unfamiliar with the taurate? Can you get that online? Also, the other supplement you mentioned could you give me more info on that? Thanks again for taking the time to reply and the information!
  4. Hi Sheila, Thank you so much for responding. Seth started sneezing after a croupy cough that he had had previously in February and was treated with prednisone, antibiotics and an inhaler. In April it reappeared and he was treated with just prednisone and given a nebulizer treatment. About a week later the sneezing started at school. He had this croupy cough the previous 2 years as well which doctors now think may have been a vocal tic but it always got better with medicine. Prior to the sneezing I really can't recall any other tics. We are in Massachusetts and currently see Dr. Williams a child psychiatrist who specializes in Pandas/Pans. We are also on the wait list to see Dr. Sharf a neurologist at MGH. We had been at Childrens but there approach was to continue to push the anti psychotic dose up and add kolonopin when Seth went into crisis at the onset of school. We just had blood work done and he tested positive for mycoplasma pneumoniae and high IGG. He started on azithromycin last night. It has been over 2 weeks since he has been able to speak and hes really exhausted and down. We see Williams next Thursday. If you have any suggestions as to what to ask at this point we would really appreciate it. I also made an appointment with Dr. Trifiletti in New Jersey. And called the Yale tic program. I hate to confuse things but I am feeling desperate for Seth. His tic has morphed somewhat through this constant, rapid phase we have been in and is more like exhaling with a rasberry noise. He still cant suppress long enough to talk. Any advice or additional resources are welcome! Thanks again
  5. Hello, I am new to this site. My 10 year old son starting sneezing in April out of the blue one afternoon after I picked him up from school. This journey has had us on Risperdal, haldol and when the side effects outweighed any minimal improvement transitioned to intuniv and clonidine extended release, the new doctor went back to the basics. As he has not been able to speak in 12 days the tic is so severe the doctor started him on Keflex as a long shot to see if there is a PANDAS component. He wants us to then try abilify. We also supplement with magnesium, gaba, vitamin D and recently started cbd oil. We are so concerned for him currently, as the tic is exhausting him and emotionally he is very isolated and down. He also tics in his sleep and wakes every night around 1am and is up until about 4am, if he is able to get to sleep at all. This is after giving him trazadone, benadryl and melatonin. If anyone has any feedback or has dealt with something like this we would greatly appreciate it.
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