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  1. Does anyone know of an ENT in Maine, willing to work with PANDAS and do a T&A? Pediatrician said she isnt having much luck. Doctors in Bangor said to take him to Mass. Local would be better for our son as he has Autism too and to be away from everything he knows for such a big thing could set him back worse than ever. Thanks
  2. Thank you so much fcefxer! That is great to know. I looked him up this morning. He is also affiliated with EMMC and he is only 36 minutes from me. I will definitely be calling first thing Monday!

  3. First of all, please do not bite my head off and tell me what a horrible parent I am. Each of our children are different, each respond differently, and each road we go down is completely different. My son was first diagnosed last May when his first round of a azith after a positive throat culture stopped his tics completely. Since then we have tried numerous numerous medications. Some have benefits and some have done nothing, but everyone of them has caused my son more grief. Some have given him severe diarrhea, some of given him severe bone pains, and now most recently after taking azith at night he spends 2 or so hours pacing, mumbling, pulling his hair and eye lashes, and just miserable. This has happened the last two nights since he began the azith again. It occurs about an hour after taking the dose. I was able to get a little video of it and will be sending it to Dr. T and the pediatrician. My husband and I have gotten to the point where we cant continue to watch him suffer from what is supposed to make him better. Has anyone experienced or heard, what happens if you dont treat the PANDAS? Prognosis? Complications? I have researched, but am not coming up with anything at this point. Thank you for taking the time to read this and not judge.
  4. In desperation I contacted Dr. Trifiletti in New Jersey the evening of Thanksgiving, by email because we were desperate for our son who has been diagnosed with PANDAS for about a year. He has been responsive, sympathetic, caring, and is the first doctor I have dealt who actually seems to care what our children are going through. I highly recommend if anyone can get to Dr. T in New Jersey it will not be a wasted visit. Just wanted to share my experience to hopefully help another parent out. This is a long difficult and painful road we are all on. Thanks for taking the time to read this.
  5. Thanks, I have tried to access that list quite a few times but for some reason it will not load on my computer. I tried on my phone, but it comes in all blurry.
  6. Bumping this up because I would be interested to know too. Dr. T. just came on board to consult with my DS pediatrician on how to treat the PANDAS. She thinks IVIG is the next way to go. We are looking for anything that might help, but havent made our minds up on anything yet.
  7. So in the midst of everything that is going on with our DS right now, hubby's company is talking about transferring him back to South Carolina. Looks like down near the Charleston area again. Does anyone know of any doctor's in SC that treat PANDAS?
  8. Thank you I have pulled up Dr. T's information. I am even going to email him myself as it says you can on his website. I will attach the documentation I have complied into a table so he can see what has exactly occurred.
  9. We had an appointment scheduled with Dr. Price in Saco Maine tomorrow. We called this morning as we are expecting a foot of snow tomorrow and its a two and a half hour drive right through the storm. I recieved a call back this afternoon that Dr. Price is no longer going to see new PANDAS patients and she decided that yesterday. I am going through a range of emotions right now from anger, to defeated, to tears. Our pediatrician is trying to learn all she can about PANDAS as my son is her first PANDAS patient. She is very open to any treatment suggested. Does anyone know of any PANDAS doctor that would be willing to talk with another doctor via the telephone about PANDAS, treatments, outcomes, etc? Please dont just say go out of state because it is not an option. Please do not criticize for not being able to either as I just can't handle that right now. Looking for possible solutions as I wait for our pediatrician to call back.
  10. My PANDAs son began a constant cough that was associated with eating (as soon as he walked toward the table it would start, and continue through the meal, hundreds of times. Only around eating. We put him on 14 days of Amoxyl (assumed that he may have gotten strep again) and it disappeared. He then began a blinking tic, which has also since disappeared. I believe it can be a tic. I am curious if your son is on prophylactic antibiotics or not. He was taking antibiotics twice a week until about 2 weeks ago. We stopped them because he had severe diarrhea that we couldn't stop. It was causing him great pain in his stomach and just miserable. We tried everything, but he had no quality of life as miserable as he was. He still had the cough through the antibiotics but definately not as much as now. Teachers said it was just in math class before, now it goes throughout the day.
  11. I searched through and couldnt find any directly related posts. Does anyone's child have now or had in the past, a constant non stop cough? DS's cough goes all day every day. He has been tested for mycoplasma and that was negative. It started in September, but is now much more frequent and reptitive. Could it be a tic?
  12. We have finally been able to afford to take our son to Dr. Price in Saco, Maine. We felt this is a last ditch last resort as he has tried antibiotics, steriods, and ibruprohen. Sadly with the antibiotic he showed some improvement, with the steriod he showed drastic improvement, but both caused extreme side effects. Can anyone tell me if they have seen Dr. Price? Did they find her helpful? What information can I provide to her to make best time of our appointment? We are driving almost 3 hours, but only have an hour with her and I want to make sure it is successful! Thanks so much for any information.
  13. Just not sleeping was not the issue. He couldn't sleep because of the severe bone and joint pain that came. It is a possible severe side effect of the steriod. I can't stick it out watching him scream in pain until his night time medications knock him out. It was horrible to watch.
  14. We have tried the Motrin, but not much affect. May be worth a second try since we are not having luck elsewhere. Thanks for the idea. We live in Maine.
  15. Our son has had PANDAS since last winter. He was an extreme case that convinced the neurologist. Our pediatrician is still in the mind set of she is not sure it exists, but believes he has had shown the symptoms. He shows anxiety, obsessions, emotional liability, tics, problems in math, and some extreme tantrums. We have have tried various testings, antibiotics, and steriod bursts. He is allergic to penicillins. Azithoromycin causes him extreme pain from the stomach issues. We tried probiotics, yougurt, nothing helped. The last day he took one he was in the bathroom all night long with diarrhea. He was screaming because his bottom hurt so bad. Next we tried the steriod burst. He took 40 mg yesterday morning and for the first time in weeks, actually went outside after school and played with the neighborhood kids. This was a huge sign because he has always been an outdoors kid, active, and that had stopped suddenly. Last night we were up all night. The bone and joint pain from the prednisone was severe. We tried heat, cold, rubbing them, ibruphroen, and nothing settled the pain. He cried and cried. I am so tired of watching my child in pain from the medications. I am so tired of watching him suffer from PANDAS. I feel we are at the end and he will have to live with the PANDAS active, but how? He doesn't enjoy himself, he doesn't play, is completely anxious all the time, and obsesses over everything. Does anyone have any other ideas of possible treatments? My doctor is consulting with a specialist in Southern Maine, but I can't just sit back and wait for them to come up with ideas.
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