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mylittleangel

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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 finishes the CBiT, we will slowly wean him off the Abilify. My only concern is that the child has to be really willing to put in the hard work that this technique calls for. They are not sure he is ready.I will keep you posted.
  2. NAC Clinical trial

    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. Increase in tics

    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 local supplement store that contained 400 mg Inositol and 400 mg of Choline in tablet form and gave it twice a day. He was 9 (now 11) at the time and probably weighed about 75 lbs. His tics went away within 2 weeks on the supplement! I read somewhere once and have never been able to find it again that Inositol should be given with Choline because they are somewhat like synergenistic ions (need Vit D with calcium type thing). Not good to have one without the other. I have read on forums that some parents don't like to use choline for different reasons....however, our experience was he tolerated it fine, no side effects and tics went away.THAT's what I was looking for!! That was first venture into any alternative supplements and I was really scared to try it, however, it was either try it or lose my sanity. I kept him on it for about 2 months then weaned with no return of bird like noise tics. We did Intuniv for 1 year- did well for 5 months then started having too many side effects (sleep issues). And, following each Strepisode- even on Intuniv- he would still get motor/vocal tics. He is no longer on Intuniv. We have never tried Clonidine. Topomax is no-go due to strong family history (both sides- me and DH)of kidney stones. His brother had 6 mm kidney stone at 10 years old and Topomax has increased risk of stones so we have never "gone there." Luckily, his vocal tics now cause voice pitch breaks with some peeping before words but we have never returned to what we had the summer he was 9. I am a firm believer that the Inositol/Choline was responsible for making the tics go away. DS is on SSRI now-which according to research- Inositol does not seen to have same effect once those are used?? If not, I think I would put him back on it?? HTH We have been on the clonodine for 12 days now. We have slowly increased the dosage to limit the side effects. Right now he is taking .075 (1 pill in the morning, 1 after school and 1 before bed). we have yet to see any improvement. His vocal tic is the worst it has ever been and this has also been the longest waxing we have ever had. I was told by my neurologist that it could take up to 3 or 4 weeks to see if the clonodine is working. I am trying to be patient but this noise is just driving me crazy. If the clonodine doesn't help, i really don't know what we are going to do.
  4. Increase in tics

    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 hair back, sniffing, throat clearing, and a loud "whoo". I am crushed. We happened to finally have a long awaited appointment at a Tourette Clinic in Toronto and were told that he is considered a mild case because he has no co-morbid conditions (except some slight anxiety - petrified of rain). We were told, however, that they have a psychologist on staff who does something called CBIT (Comprehensive Behavioural Intervention for Tics). Has anyone ever heard of this? The psychologist is on mat leave and wont be back for a year so we have to wait. I was given a book and told I could do it on my own at home. I was just wondering if anyone has tried this and if so, have you had any success? The neurologist also told me that because low Thyroid runs in my family, they would like to check my son's levels. Apparently, low thyroid can exacerbate tic frequency and intensity. Has anyone looked into this? I love my little boy so much and would love to just find one thing that could help him. I know school is starting soon and this is high time for ticcing but i would love to just have him go into grade 3 tic free. Here's hoping.
  7. advice about steroid

    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 him up, who's going to be there etc. He has no bed wetting or urinary frequency. He has no trouble going to sleep at night but wakes up really early and sometimes during the night. His ASDbaseB was 224 and his ASO 467. I guess what I am asking is, if it is not PANDAS, is the prednisone going to make him worse?
  8. Celiac gene....

    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. Celiac gene....

    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. post-PEX plan

    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 38 pounds)...not sure if that has anything to do with it. Also, my husband has psoriasis which is an autoimmune disease...again, not sure if that is related. I contacted Dr. K in Chicago and I am going to speakwith him this week. He said he would be happy to work with my pediatrician here (now I just have to convince her). I just don't know if he is PANDAS or not. Now that Faith and Char have found out they are, I feel like mine is too. I don't want to wait until it gets worse but the PANDAS treatments scare me.
  11. post-PEX plan

    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. PANDAS - Faith

    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 Cunnigham study and get the Cam Kinase test? Much thanks, Chloe
  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. Any one heard of Dr. Sims

    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. Any one heard of Dr. Sims

    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 this conference. I will follow up with you as soon as I have any new information.
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