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bettyjuck's Achievements

  1. I have taken my son to her. Message me any questions or I could message you my email.
  2. Not sure if this will help you but I had to put my son on medication two years ago when his tics exploded due to illness. At the time he had 5-7 at a time and they changed every 5-7 days. He went thru 45 of them !! Was horrible. Started low dose of tenex and they did go away. Not sure if it was the medicine or time but within a week things improved. Only side effect was sleepiness in the beginning but that did not last long.
  3. Quick question for anyone that has done a steroid taper. My son was diagnosed with Panadas 2 years ago after a horrible time after walking pneumonia. He had the classic night terrors, separation anxiety, OCD, 45 tics ( what we were able to count ) , urinary increase.... You name it he got in in a 3 week span. After 6 months it all faded and he was good for over a year. Minor tics here and there but nothing crazy. He just got over the stomach flu and his tics exploded 4 days later. We think it is a reaction to the illness and he was put on a steroid taper. We are on day 5 and I do not see any improvement and they might be happening a little bit more then before we started steriods. Would this mean he might have Tourette syndrome and Panadas ? How long did it take to see improvement ? Do the tics always improve on steroids or do I need to wait until they fade out in the next few weeks ?
  4. My son also has an increase in Tics at the start of fall allergy season. We have not found anything to help yet. I did increase his fish oil and make sure he showers off after coming inside. He was out at his Aunt's house this weekend and the tics got so much worse while playing in the backyard. So there is a a link for us.
  5. Hi....Just a quick note. My son's issues all started after a bad virus and his tics (along with a slew of other things) only come out after he is sick and his immune system is attacked. They believe he has PANS and it is caused by inflammation and not antibodies. So not only strep effects him. it is any virus or bacteria. We decided to try the antibitotics based on a recommendation from a doctor doing a trial study on Pandas/Pans. They believe that PANS is caused by inflammation and that Zithromax helps stabilize the immune sytem. Well it worked....back to 100% until he gets sick again. Every doctor has a different view. But it does not hurt to look down every avenue.
  6. My son is gradual. Will start flare and depending how bad will have symptoms for 3weeks to 6 months. The first one was bad and lasted 6 months. This year mild and 2 weeks here and there.
  7. Hello....Quick question for everyone regarding my son starting prophylatic Zithromax. We saw a pediatric immuniologist today that treats pans (my son is a text book case). Right now he is not in a flare and about 90% back to normal but the doctor wanted to put him on 3 days on/ 4 days off dosing schedule for the next 3 months to try and stabilize his immune system. Then a break and possibly start again in October. I am terrified to keep him on antibiotics that long and need some advise. The thought of him having a bad exaberation again scares me but so does the overuse of antibiotics. Did anyone have any issues with taking anitbitoics for 3 months straight? If this a standard protocol for PANS? He reacts to any illness along with allergies. The doctor thought his immune system is overreactive and he has a lot of inflammation. Any advise would be great!
  8. Hi...I live on Long Island and have been going thru much of what you described for almost 2 years. We have an appointment with Dr. B in July (very long wait) but in the meantime got an appointment with a pediatric immuniologist in NJ that deals with rare childhood diseases and specializes in Pandas/Pans. Her wait was 4 weeks and she does take some insurances. Message me if you want more info and if you have any questions. I basically have been treating my son myself for the past 1.5 years (via recommendatrions from others) and he is doing better.
  9. Hi....Son just had a mild flare up after having the flu. Other then giving Motrin (which I stopped after 2 weeks) and trying to keep his diet clean, what else have others done to help? This flare is not as bad as the last but as we wait to see Dr. B we are at a lose as how to treat it. Do people normally give antibiotics with a flare if the cause was viral? Any advise would be great. Our appointment with Dr. B is not for a few months and the peditrician is useless.
  10. Hi....I am looking for a doctor to help treat my son for possible Pandas/Pans in New York. I live on Long Island but willing to travel if need be. Any recommendations?
  11. Anyone use a homepathic doctor or Enviromental Doctor on Long Island, NY or New York City that spcecializes in Kids with Tics/Tourettes? Looking for a natural way to help my son who has been suffering from tics for 4 months now. Also anyone that has a neurologist or psychiatrist in NY that specializes in TS/Tics.
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