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About mylittleangel

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    Toronto, Ontario

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  1. After a long five years of dealing with Tourettes, I finally found a doctor that I connect with and trust. My son is on 5 mg of Abilify and our new doctor has laid out a plan. My son, who is 9 1/2, will start CBiT next Monday (there are only 3 doctors in Ontario who do this therapy) with the social worker from his clinic. He said they have had wonderful results and they can start treatment at age 9. We will have 8-10 sessions and hopefully this will provide my son with enough tools to be able to apply this technique to his most distressing tics (a loud squeak is the worst one). After he finish
  2. I just got off the phone with them and am hoping to get the call tomorrow that they have accepted my son into the trial. My son is 9 now and his vocal tics have really exploded this year. I am really willing to try anything. The woman I spoke with was so nice and answered all my questions. It seems like they have been having good results.
  3. Years ago when my son started with horrible frequent vocal and motor tics- I started him on a Inositol/choline supplement. The vocal tics were very similar to bird like noise- heeing, hooting and peeping and it was driving me CRAAAZY!! Hee- Hee- Hoo repeatedly. At the time- he was not very aware of it and it did not seem to really bother him. Meanwhile, I thought I was living in a bird sanctuary. I did not use the tremendously high doses like you see recommended by many psychiatric med sites. I think those sites say one can go as high as 12 GM= 12,000 mg a day! I found Source Naturals at a lo
  4. We are still seeing an increase here after doing really well since January. This is the longest waxing period we have had in 4 years and I am really starting to worry that it will not ever settle. I am pretty certain that food is not an issue for him but I also wonder if he has some seasonal allergy that triggers his waxing periods. We just started him on Clonidine about 5 days ago. I am hoping and praying that it will bring him some relief.
  5. Us too. We have been almost tic free since January and then, about 4 weeks ago, we started to see the tics come back. I am so upset because i thought we were good. We had never had such a good stretch since his tics began. The neurologist believes it is the time of year when kids get nerves for school but i am not convinced. I hope they all settle soon and we all have an even longer good stretch.
  6. My son has had tics since he was 4 (likely earlier but we just didnt know they were tics at the time). We have been to naturopaths, doctors, neurologists and clinics. We have tried everything, including going to visit Dr. Sims in Baltimore to look into the TMJ connection. Nothing has worked. My son is now 8 and has had so many tics that I cant even remember them all. He is currently on Risperdal and was doing fantastic up until mid-july. Since then he has had eye rolling, pulling the shoulder of his shirt, kicking his right foot to the ground (only when wearing running shoes???), pushing his h
  7. I just got off the phone with Dr. K and logged on here to ask the same question.......I am afraid of the steroid burst. He suggested 5 days for my son and said it is a low dose and would do no harm but I am still scared because of Chemar's warning. My son also has tics as his main problem and started young (before age 3). I wouldn't say he is irritable (he is only 6) but get's upset really easily. I didn't think he had seperation anxiety because he has no problem going to school or to his friends house to play. Dr. K thinks he has some sseperation anxiety because he asks me who's picking
  8. No connective tissue disease that I know of. He does clear his throat sometimes but he says it's not a tic. I think it is.
  9. I am so confused......if my husband has psoriasis, could that mean my son with tics could have PANDAS because they are both autoimmune? I had my son tested for celiac and he was negative.
  10. Faith My son gets sick more often than he is healthy. Since he was an infant he has had numerous bronchial infections, ear infections (which he has tubes for), sinus colds, rashes/hives. Over the past 2 years, I can connect 5 sinus colds with major flare ups of his tics. He doesn't have any separation anxiety, or OCD (he does smell his fingers a lot). I also remember in April he had an ear infection and after his round of antibiotics, his tics disappeared completely only to come back with new ones when the antibiotics were gone. He is very tiny for his age (just turned 6 and weighs
  11. How do you know how long your child has had PANDAS? My sonhas had tics (not noticeable) since he was maybe 2 and then when he was 3-1/2, they starting getting progessively worse. He now just turned 6. Does that mean he has had PANDAS for 4 years? Is that a long time? I am freaking out!
  12. Faith .... your in box is full! I need to get my son tested for PANDAS ASAP. He has had tics since he was 3, along with too many ear and sinus infections. He turned 6 today and also developed a screaming tic.....a birthday to remember! He has had a wicked sinus infection for the past few weeks and since then has been going down hill fast. I do not want to wait any longer. I almost put him on medication until I read that Faith's son had PANDAS. I need to make sure this is not my son's problem before I go down the dark road of medication. Please, somebody tell me how to get into the C
  13. I was wondering if anyone's child has had a negative effect from cranial sacral therapy? My son was evaluated by 5 cranial sacral therapists, 3 osteopaths and 3 TMJ dentists at a seminar on Friday and they all came to the same conclusion without me telling them anything - my son had trauma at birth (true), was colicky from the second he came out (true), had digestive troubles (true). They said he would benefit greatly from cranial sacral therapy. He is doing so well right now that I am afraid to rock the boat. Anyone have any experience?
  14. We are looking into the ALF system as well. In the meantime, my ortho has adhered something to my sons back teeth to see if he could get some relief from the TMJ. I don't know if it is coincidence or not but my son has completely settled down. The tics are still there, just not as loud or as frequent. We are going on October 2, along with my ortho, to meet with a number of ALF specialists and craniosacral specialists. I will post when we return.
  15. I do believe that this is part of my sons problem. At this convention (October 2) my son will also be seen by one of the few ALF specialists, along with craniosacral specialists and osteopaths. I am very excited and cautiously optimistic. My wonderful doctor who arranged this for me called me yesterday and said he had been thinking about my son and thought of something he would like to try on him. We are going to see him on Wednesday. As for doind a study on pediatric patients with Tourettes to see if they have TMJ - I will definitely be suggesting that to all the doctors I meet at t
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