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Everything posted by mylittleangel

  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. 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 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. 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. 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. 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 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. 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 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. 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 this conference. I will follow up with you as soon as I have any new information.
  16. My little guy has not been wearing the device as I didn't think it was doing anything. Dr. Sims is working with a specialist here who is fabulous. We went to our second appointment and he did a number of tests on my son that showed some results that even Dr. Sims didn't find. The doctor tested for noise in my sons jaw when he opened and closed his mouth. The results were not good. He said he has never seen results like this in a child so young. His left jaw snaps backwards much further then it should. He also took a numner of x-rays and everything supported what Dr. Sims said - the left side has a severe TMJ issue. Now, as for the treatment plan, this is where we are at a stand still. The doctor does not want to do anything just yet. He also said he will not do anything that is irreversible because of the age of my son. He will not do anything to hurt his growth. The good news is that the doctor has invited my son to come to a conference that is going to be lead by the guru of TMJ and the ALF orthodontics. He is going to give my son a free consult, along with many other professionals in the field. This will take place at the end of OCtober. We will then know how to proceed. So, for now, we do nothing and hope that the tics do not get worse. School is starting soon and he is going in to grade 1 - big changes and lots of stress. I hope it is a smooth transition. I will keep everyone posted. I do have to say that Dr. Sims has been absolutely wonderful in following up with me and finding me an amazing doctor in my own city. He follows up with this doctor after my appointments and then calls me. I think he is an amazing man and do not feel like I have been ripped off in any way, even though the device didn't work. I do believe this is going to help my son. I just have to be patient. I have gone the naturopath route for 2 years now and, unfortunately, it has not helped. I do not want to turn to medication so I am choosing to be hopeful that these TMJ specialitsts can help.
  17. I thought I would follow up with where I am at with Dr. Sims. I spoke to him yesterday. He called to give me an update on what progress he had made with my ds case. Dr. Sims was at a conference and met with a colleague of his who works in my city. He reviewed my sons case with him. They concluded (through the many x-rays that were taken pre and post device) that my ds vertebrae twists to the right but once the device is in it is straight. His lower jaw was still not balanced with the device in the mouth (as per the x-rays). Dr. sims arrange with the Ortho in my city to meet with me tomorrow (along with the device) for a consult. They are going to work together to help my ds. They feel that he would benefit from chiropractic work and an adjustment of the device. I am grateful to Dr. Sims for finding someone to work with me here and who really wants to help my ds. I am hoping with some chiropractic work and fixing the device that we will finally find some relief.
  18. Strange - my naturopath just called and said my ds blood test showed he had mycobacteria. Is that the same thing as mycoplasma infection? He wants to treat him with a series of drops that are put in the bend of the elbow for 3 weeks. Sounds bizarre. I am going to try it anyway.
  19. Has anyone has a blood test for ammonia in the blood/brain? My ds had this done today because his amino acid test (months ago) showed a high level of ammonia in his body. I have never heard of this before. Anyone? My naturopath also pricked my ds finger and dropped 10 drops of blood onto a film. He then mixed each droplet with a different vile of medicine. He is going to examine each mixture under a microscope to see the interactions and determine A)if my ds has an underlying virus or bacteria and B)which medicine will get rid of it. He said my ds was the first patient he is doing this for as he had just learned about this from some pediatricians and labs in Germany. At this point, I am willing to try anything.
  20. I was wondering if anyone has had success with getting their child chiropractic adjustments? When I was at Dr. Sims with my ds, dr. sims noticed through examination and x-rays that my ds's spine is out of line (curving to the left). He also pulls his jaw to the left when he bites. The naturopath examined him today and said he definitely has some stress that is pulling his spine out of line. We are going to see a chiropractor next week. Will it hurt my ds? I am a bit scared. Could it cause more tics or could it get rid of some tics? Any info would be helpful.
  21. I am back home now and just devastated. I don't know why but I really thought this was going to work. Dr. Sims did spend a lot of time with me and my son and he did ask if I noticed any triggers (which I do not) for him. He showed my son how to find the right bite to put his teeth in the grooves - still did not take the tics away, not even a little. Dr. Sims took a video (about 20 minutes) of my son without the device in and then took another 20 minutes with the device in. He said he was going to study the videos to see what he noticed. I am having a telephone consult with him a week from Monday. My ds has no pain with it and is not uncomfortable but cannot eat with it in. Obviously we did not bond it in his mouth. Dr. Sims thinks it might have something to do with the fact that my son always pulls his jaw to the left when he closes his mouth. The left side was also the side that showed on the x-ray to have no space at all between the upper and lower jaw. It is also the side which his ear tube has still not fallen out and the side where he gets pain when flying or when he is sick. Dr. Sims has set me up with an ortho where I live and is going to review my ds case with him. He thinks he might need an upper jaw expander to relieve the pressure from the side as well as the bottom. At this point, I have spent so much time and money on this that I feel like I am going to at least go see this ortho and find out what he thinks. My sons tics were so bad yesterday I just wanted to die. He is only 5-1/2 and I am so scared of what is to come in the next few years. I am not yet ready to give up on Dr. Sims but I am also thinking of trying topomax. Anyone heard from Michael Tampa?
  22. Not great news.......was back at Dr. Sims this afternoon to have the appliance put in my sons mouth and I definitely did not have the results I had hoped for. First of all, the device is awkward no matter what size it is. It is impossible for him to keep it in his mouth because he keeps playing with it. We decided, like Ryans mom, that we would bond it to his teeth because this will be the only way he won't lose it. Dr. Sims said the problem my son has is that when he bites his teeth together, his jaw pulls to the left. In order for the device to work, he said, I have to get my ds to make sure he bites down straight so his upper teeth allign into the grooves of the device on the bottom teeth. Impossible for a 5 year old. I do think he was ticcing less often when I got him to keep it alligned in his mouth but I cannot possibly be with him 24/7. We are going back to Dr. Sims in the morning to decide if I want to bond it or not and to make any necessary adjustment. I do believe in what dr. sims is saying and that is why I am so frustrated. He showed me my son's x-rays and I could clearly see that on his left side he has zero space between the upper and lower jaw and on the right side he has very little space. I always notice that he is much worse when he eats (doesn't matter what he is eating) and Dr. Sims said that would make sense as it is irritating the nerve more. Anyway, I think at this point, seeing as it was not successful for anyone on this forum, I would highly suggest that you all save your money and not waste your time with this. I will write more tomorrow after my final appointment. Dr. Sims did set me up with an Ortho who lives near me that could follow up with my sons progress. I do not think he is trying to scam anyone. I truly think he wants to help. I just don't think he has this thing quite figured out yet.
  23. Hi everyone - FAITH, YOUR INBOX IS FULL I had my appointment with Dr. Sims today. I only have a few minutes so need to be quick but will write more tomorrow. I had a wonderful experience with Dr. Sims and his assistants. Upon examining my son, Dr. SIms found his upper jaw was not growing fast enough and was pushing the lower jaw back. His bite was also coming down too much over the front teeth. Unfortunately, my son did not tic for 2 hours while we were there (he hasn't had a quiet moment in 4 months). Dr. Sims told me to leave and come back later in the afternoon to try again. We came back and Dr. Sims had set up a camera in his office and let my son (5 1/2 yr) go in and play with me. Sure enough his tics came back and Dr. Sims could witness them first hand. He was then able to put in the tongue depressors (he needed 2) and sure enough my son was quiet. I am not convinced 100% that it was the device that stopped the tics and not my son just holding them in but I was intrigued enough that I ordered the device. We did the x-rays and were told to come back Friday to have the device fitted in my son's mouth. Dr. Sims was completely honest, not pushy (almost the opposite) and thorough in all his explanations. I only hope when Friday rolls around I am as happy with him as I am now. I will keep you posted.
  24. I am devastated. This was my fear all along with Dr. Sims. I am still going tomorrow but my hopefullness is gone. My son is mostly vocals and I have now lost all hope that he will be able to help. I have been unable to find what triggers my sons tics and they have been at a high for almost 4 months now. I can't stand it. Anyway, we are off tomorrow. I hope I can share some more positive news with everyone.
  25. I am hoping everything went well. I am leaving Sunday for Columbia with my little guy and was hoping to have some success stories before I left. My son has more vocals then motor tics and right now he is definitely waxing so I hope to see an immediate difference when the device is put into his mouth. I am planning on bringing the laptop so I will keep everyone posted as best I can. I am both excited and anxious and cannot sleep. We've been at this for almost 2 years and have yet to find his triggers. We have treated for candida and clostridia, leaky gut, have restricted his diet and tried various supplements. Nothing has really worked. This is my last hope.
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