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mcturro

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mcturro last won the day on January 14 2016

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  1. Thanks so much Wombat and Sheila for your responses. It really helps. But I've got to tell you the pediatrician had me convinced my son's tics aren't allergy related, especially since he has no allergy symptoms. However, after hearing from you, I'm not giving up hope!! Sheila, you asked a little bit more about my son. He's 8 years old and started mildly ticcing on and off when he was six (some were there for a month when he was four but they quickly went away and stayed away for two years). Then, in March of last year (when he was 7), his tics went from mild and intermittent to CONSTANT. It all happened after he was diagnosed with seasonal allergies (that is one allergy he DOES have symptoms for) as well as an ear infection. If you see my post from January, I tell the whole story there about the potential for PANDAS and then how it is not PANDAS and how we got to the point where we are now. We saw an allergist (an MD with a integrative medicine background) in January who told us to take him off the Claritin (for kids with tics it may not work the same way as it wasn't working at all) and said to take high-end, organic supplements (B Complex, Probiotic, multivitamin and DHA). To keep our dog out of his room, shampoo weekly etc. (I explain it in the last post). He was also allergic to dust and just about every outdoor allergen. We've been on this anti-allergy plan for about a month, and so far no significant improvement. The one time we did notice a difference was a few days after my dog was professionally groomed, but then we had a neighbors dog here for two days (I already committed to watching the dog), and my son's tics came back that afternoon the dog left. But I don't know if it was just a fluke or if it's dust or some other allergen. Or maybe none of the above? He still tics at school like he does at home as well as at church and there are no dogs there. So it's hard to know what's going on and how long after he's exposed does he react?? So frustrating that it's this hard to find the cause. I still can't believe the pediatrician said in so many words that this is normal for a body to be ticcing (either grunting, shoulder shrugging, eye blinks, neck bends) every minute of every day and we should just get used to it. How is that normal???
  2. I was told of the Magaziner Center in South Jersey. I think it's in Cherry Hill. Heard third hand very good things about it. Hope that helps you!
  3. I just want to say that my friend also had issues with her teenage son. She took him to therapy to basically make him realize this is bad and it's affecting the whole family. The therapist can talk to your son and if your son has any underlying anxiety/depression that can be treated as well. I hope that helps you! I'm wishing you lots of success! Best of luck!
  4. I had to switch pediatricians because my last one was in complete denial that my son's Tourette's could have been started by an ear infection and she started treating me like I was nuts. In the meantime, we've determined he doesn't have PANDAS, but a PANDAS expert we visited said my son looked allergic and to get allergy testing done. As I wrote in a previous post from January, he's allergic to our dog (and every outdoor allergen, basically) but has no symptoms of allergies. The only symptoms are in the springtime. Does anyone else's kids have no allergic symptoms who tic and have been shown to have allergies?? Is it typical? Our new pediatrician that we saw tonight said that he definitely doesn't' have PANDAS, which we knew. And that tics are not caused or triggered by allergies. I mentioned this web site and Sheila's book that has hundreds of stories to the contrary, but he said that there could be several thousand who don't have these reported experiences. Anyway, I'm confused more than ever. However, the Dr agrees with me that tic medication isn't worth it unless my son is taking a hit on his self-esteem, which thankfully he has not so far--he's only 8 years old. The side effects can be bad. The Dr. is a smart man who does a lot of reading and he's more curious than our last pediatrician, so I don't completely distrust him. I just am even more confused. I guess I'm just curious: Can someone answer why Tourette's improves for about 50 percent of the kids (and not for the other half) if allergies or environmental causes (things that can be controlled) have something to do with it? In other words: Why does Tourette's spontaneously improve for so many if there are environmental causes behind them? Thanks for your help! Feeling lost and losing hope...
  5. Hi. I was told to post here, so I thought it would be best to just repost what I did in the tic/Tourettes forum. Hope that's okay: Posted Yesterday, 08:48 PM First, I want to thank Sheila and the staff for their amazing web site/forums and incredibly helpful book. I am so glad I found these amazing resources!! Please excuse the long post, but it's been a long story.... But it is: My 8 y.o. son started ticcing when he was 4--mildly, no one really noticed but me. Then, they went away within month or two. When he was 6, they came back. He started ticcing more regularly but still mildly and intermittent. In March of 2015 at the age of 7, his tics became so bad it was completely dramatic. Happened two weeks after having an ear infection and being diagnosed with seasonal allergies. Having read about PANDAS, in May, I asked for strep testing after he had the ear infection. His ASO test came back at 707 (normal is up to 200). They put him on antibiotics and he was tic free for two months--May until July. Then we saw a neurologist who said he doesn't have PANDAS because it's so rare and he didn't have the dramatic change, I guess. I still didn't believe it so we had his ASO repeated in July and it was in the 400s. His pediatrician said it was coming down, so the strep was not the reason for the tics. Then in September, I wanted to see the levels again, and it was lower but still in the mid 300s. I pleaded with the doctor to giv ehim antibiotics. She did, Amoxicillin 10 day trial. But no improvement in tics. In November, we had him tested for the last time and it was still in the low 300s. His tics went from eye blinks, to facial rolls, to throat clearing, to grunting--all at once or separately. The grunting has been going on since October. It happens several times a minute. Sometimes several times a second, it seems. Then when I had enough of no one really caring, I wanted to get a final opinion, so we saw a PANDAS expert in December, Dr. Josephine Elia at Nemours/DuPont in Wilmington, DE. She was great but said he didn't have PANDAS because we have a family history of tics (my dad has motor tics but no vocal tics). She did a thorough evaluation of him and said although he didn't have PANDAS, he looked allergic so recommended allergy testing to us. Even though to anyone else, including his parents, he didn't appear the least bit allergic. But I guess they can tell from the color inside your nose (grey?). We also put him on Claritin and then Zyrteck for 6 weeks (as recommended by Dr. Elia), as well as a netti pot. No improvement in tics. We also did a dairy-free trial for two weeks and no improvement. We saw a great allergist in King of Prussia, PA, who has an integrative medicine background. She tested him for 55 allergens and found he's allergic to just about every outdoor allergen, dust mites AND our dog (as well as cats, but we don't have one). We would have never guessed he was allergic as he's never had any symptoms other than seasonal ones in the springtime--no other time. Could this be the allergy coming out in tics? Or is it just a trigger to the tics? It breaks my heart that he's allergic to our 10-year-old dog that we've had since he was a puppy and before our son was born. The allergist said we don't have to get rid of our dog, but that we have to make a lot of changes, that we're prepared to do. Dog out of his room/daily vacuuming/HEPA filter/ dog shampooing weekly. And then the supplements (high end/expensive) Omega 3s, Probiotic, Multivitamin and B-Complex. Tonight he started shoulder shrugging and neck bending. It's bad. Just looking for direction. I'm glad we have some answers in that he definitely has allergies, but I just don't know what to do with this information. Other than treat him with the supplements and see if it helps. Do you think it's the allergies causing the tics? Any advice is appreciated. Thank you!
  6. First, I want to thank Sheila and the staff for their amazing web site/forums and incredibly helpful book. I am so glad I found these amazing resources!! Please excuse the long post, but it's been a long story.... But it is: My 8 y.o. son started ticcing when he was 4--mildly, no one really noticed but me. Then, they went away within month or two. When he was 6, they came back. He started ticcing more regularly but still mildly and intermittent. In March of 2015 at the age of 7, his tics became so bad it was completely dramatic. Happened two weeks after having an ear infection and being diagnosed with seasonal allergies. Having read about PANDAS, in May, I asked for strep testing after he had the ear infection. His ASO test came back at 707 (normal is up to 200). They put him on antibiotics and he was tic free for two months--May until July. Then we saw a neurologist who said he doesn't have PANDAS because it's so rare and he didn't have the dramatic change, I guess. I still didn't believe it so we had his ASO repeated in July and it was in the 400s. His pediatrician said it was coming down, so the strep was not the reason for the tics. Then in September, I wanted to see the levels again, and it was lower but still in the mid 300s. I pleaded with the doctor to giv ehim antibiotics. She did, Amoxicillin 10 day trial. But no improvement in tics. In November, we had him tested for the last time and it was still in the low 300s. His tics went from eye blinks, to facial rolls, to throat clearing, to grunting--all at once or separately. The grunting has been going on since October. It happens several times a minute. Sometimes several times a second, it seems. Then when I had enough of no one really caring, I wanted to get a final opinion, so we saw a PANDAS expert in December, Dr. Josephine Elia at Nemours/DuPont in Wilmington, DE. She was great but said he didn't have PANDAS because we have a family history of tics (my dad has motor tics but no vocal tics). She did a thorough evaluation of him and said although he didn't have PANDAS, he looked allergic so recommended allergy testing to us. Even though to anyone else, including his parents, he didn't appear the least bit allergic. But I guess they can tell from the color inside your nose (grey?). We also put him on Claritin and then Zyrteck for 6 weeks (as recommended by Dr. Elia), as well as a netti pot. No improvement in tics. We also did a dairy-free trial for two weeks and no improvement. We saw a great allergist in King of Prussia, PA, who has an integrative medicine background. She tested him for 55 allergens and found he's allergic to just about every outdoor allergen, dust mites AND our dog (as well as cats, but we don't have one). We would have never guessed he was allergic as he's never had any symptoms other than seasonal ones in the springtime--no other time. Could this be the allergy coming out in tics? Or is it just a trigger to the tics? It breaks my heart that he's allergic to our 10-year-old dog that we've had since he was a puppy and before our son was born. The allergist said we don't have to get rid of our dog, but that we have to make a lot of changes, that we're prepared to do. Dog out of his room/daily vacuuming/HEPA filter/ dog shampooing weekly. And then the supplements (high end/expensive) Omega 3s, Probiotic, Multivitamin and B-Complex. Tonight he started shoulder shrugging and neck bending. It's bad. Just looking for direction. I'm glad we have some answers in that he definitely has allergies, but I just don't know what to do with this information. Other than treat him with the supplements and see if it helps. Do you think it's the allergies causing the tics? Any advice is appreciated. Thank you!
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