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  • Sorry this is so long. But hi!

    Hi,
    I have an 8 year old, diagnosed with Tourette's when he was 4. We have been through lots of stuff so far.
    He was very noticeably OCD since he was a year old. He had to arrange toys a certain way. He would only wear certain clothes. He had frequent explosions that were unexplainable. He was originally diagnosed with 'probable emerging Tourette's,' but after discussing it with a doctor, it was determined he had tics, coprolalia, and ADHD since he had started talking.

    He was in a special bridging program for kindergarten. It was all of kindergarten and part of grade 1, and had a lot of ot, pt, and an in class speech pathologist.

    The next year he moved into a regular class, and he failed grade 1. He was on medication for Tourette's, and we unsuccessfully tried starting him on ADHD meds to make him more functional three times. The third time his doctor admitted him to the hospital. He was admitted for 3 weeks. I was bringing him home on weekends, and he was so stressed, and more volatile than i'd ever seen him. The ADHD medication was stopped. We had him tested for some food allergies. He was allergic to wheat and milk. We made it to the tourette conference that year.

    in grade 2 (his teacher refused to fail him.) he went through a psychiatric program for children half way through the year. We discovered he had been having frequent absence seizures. This explained some of his numerous fears, like escalators. It was decided he is not adhd. When his Tourette's meds were stopped, and he was put on epilepsy meds (both the adhd and tourettes meds he was on made seizures worse) and certain food was eliminated, he now seems like a normal kid with a whole pile of tics. He still has a temper, but he is predictable, and aware of what he does. Almost completely normal. Except, He still has stomach trouble. His stomach puffs out quite a bit even with no exposure to his allergens, then randomly flattens. He is seeing a gastroenterologist.

    This year, he went through a half year in a highly supported rehabilitative program. He has been in a regular new school for a month. While we have had a few teachers in the past that really, really didn't understand Tourette's, his teacher in this class understands it very well. Are there any suggestions as to what can be done to help him in the self confidence department? This last month has went well, but from kindergarten to now he is in his 4th school. He is a little sad about having to make new friends again.

    Also, I was told by his doctors RN, that a lot of kids with Tourette's have stomach problems. Any suggestions of what to ask the next time we are in with the gastroenterologist?

  • #2
    Re: Sorry this is so long.... But hi!!!

    Ask if probiotics will help. My son had ear infections from 10 mos. on and was given antibiotics about every 4 mos. he had constant diarrhea. When he started ticcing at age 8 (4 mos) before his 9th bday, I started doing research. I heard about the gut brain relationship and started an organic diet. I started him on Stoneyfield organic smoothie's and moved up to Kids Raw probiotics. His diarrhea went away and his tics waned. My Dr. told me he does not "deal" with anything but pharmacological treatments and would not comment on the results. I'm not saying it's a cure but if you can repopulate the natural flora in the gut he may feel better.

    This is just a comment now. Scientist studying the DNA of mammals found a bacteria on the DNA strand they thought must be an out of place contamination. After they removed it in lab rats, they found the rats were unable to carry or keep a pregnancy.
    Our food supply has become so "chemically clean", I would not doubt that we are missing some beneficial bacteria we would have normally gotten off raw organic veggies and dirt.

    Comment


    • #3
      Re: Sorry this is so long.... But hi!!!

      Hello Momwith2boys and welcome to the TSFC Forum. Thanks for joining us and hopefully you will find some information that can help your son.

      Are there any suggestions as to what can be done to help him in the self confidence department
      Have you contacted your local TSFC Chapter where your son might meet and interact with other kids with TS? This interaction often helps in self esteem and personal confidence by allowing him to see how others have learned to successfully deal with their circumstances. It also gives him the opportunity to understand he is not alone in the world dealing with Tourette.

      Of course a lot has to do with his support system at home, his comfort level in being able to express his tics in what should be his safe place, at home.

      What kinds of confidence issues does he have difficulty with?

      His stomach puffs out quite a bit even with no exposure to his allergens
      Has his doctor been able to rule out possible GI side effects from the medication he is taking....or if your son has been diagnosed with allergies, consider looking at unsuspected sources of allergy such as inert ingredients in any medications, prescribed or over the counter as well as in any foods he may be eating.
      Steve
      TouretteLinks Forum

      Comment


      • #4
        Re: Sorry this is so long.... But hi!!!

        Thanks for your advice Geneva and Steve. I'll have to try those brands of probiotics. He is on probiotics, and I have taken him to a naturopath that checked him for 190 possible allergens. He came back slightly allergic to a lot of things besides milk, and wheat, and his diet is free of all of them: wheat, spelt, gluten, casin, lactose, lamb, beef, mustard, garlic, ECT. His GP does not agree with the test, as it was sent to a lab outside of Canada. Her basic food panel just showed milk and wheat. I think I will ask again about going to an allergist. We have spent time with celiac society of Canada, although he is not diagnosed as celiac, and they have been great at educating on eliminating allergens. The doctor stated that the medications he was on should not affect how his stomach functions now. He is on lamotrigne which is gluten and dairy free.

        He comes home and tics quite freely and I find no one notices unless he is watched for them. I am really happy when it is just tics and coprolalia. He just seems to be sad that he isn't making friends easily, I think. His older brother has been saying that some of the kids find him weird. I tried making a playdate to go swimming with a friend from the daycare that he used to attend, and it didn't go well. He seems to gravitate to the kind of kids that are harmful to be around, i have discovered. The other child tried to keep his head under water when he thought i wasn't watching. His stomach issues have affected his self esteem as well. He may have encopresis, I've been told. I'll watch the local TSFC chapter website for any upcoming events and try to get to a meeting one day soon, thanks for suggesting it.

        Comment


        • #5
          Re: Sorry this is so long.... But hi!!!

          Just curious if the older son has or had any TS or OCD symptoms, and if they have the same mother and father. TS is supposed to be inherited. Do you know of anyone in your family that could have possibly had any traits? It sounds like you are a really informed and proactive Mom. Your son will find his niche. We hope for all the best and keep us posted on what the GI has to say.

          Comment


          • #6
            Re: Sorry this is so long.... But hi!!!

            My older son has some OCD tendencies, but is a smart pdd-nos, and is definitely not Tourette's. Interestingly enough, he has had a focal seizure once. I have one cousin who has Tourette's, but no else in the family. Both of my children have the same parents. I will let you know what happens with the gi. It's very helpful for your feedback, and experiences. It's so nice to have a formulated plan to help him. Thank you.

            Comment


            • #7
              Re: Sorry this is so long.... But hi!!!

              I can not comment so much about your situation but did want to post a comment in response to Geneva about a sibling having TS. In our family my 8 year old daughter has TS, OCD, anxiety, and ADHD with out hyperactivity. She also has Dyslexia and Dyscalculia. I say all of that to tell you that in our family we know of NO ONE else with any of these with the exception of Dyslexia but my husband has dyslexia and if a parent has it the child is 50/50 % chance of having it.

              However, I also have an 11 year old son. He does not have TS, OCD, ADHD, or Anxiety. He does have Dyslexia and dysgraphia and I believe Oppositional defiant disorder.

              So, my question is since boys have a higher chance of TS is it odd that my son shows no symptoms of the things my daughter has? Is this odd? What is the chance he could possibly exhibit things later since my daughter has ts? Sorry to hijack the thread but I found this interesting.

              Comment


              • #8
                Re: Sorry this is so long.... But hi!!!

                Well I do know that TS is in the umbrella of related disorders like dyslexia, stuttering, bipolar, ocd and odd. I think the odds that your daughter has TS versus your son would be slim. I'd like to think that your son will not develop TS. My son just started ticcing all of a sudden after a flu vac. He also had some dental work done. I don't know... I like to tell myself it is genetic and it was not a result of medical injury. I have ocd and when I was a kid I had a throat clearing tic, 2 instances of coporalia, add, social ackwardness and spd. I turned out ok until I had a kid...I grew up in a crazy world of alcoholism, abuse and neglect and I did not want any of that to happen to my son. It feed my ocd and paranoia and now my son has TS...that messed me up! I just go on day by day doing what I can. It is what is and I can't shut down. I tell myself you have to go thru hell before you can get to heaven. I'm hoping that this childhood thing will be the most difficult in my son's life and he will grow up and become a normal, happy and healthy human being and everything will be fine for him. This is what keeps everything going.

                Comment


                • #9
                  Re: Sorry this is so long. But hi!

                  Originally posted by Geneva
                  I like to tell myself it (Tourette) is genetic and it was not a result of medical injury
                  And you are correct, Geneva, based on all available medical literature, Tourette Syndrome is a genetic disorder, as was explained in this Forum post

                  Originally posted by Geneva
                  My son just started ticcing all of a sudden after a flu vaccine
                  A coincidence, Geneva, as there is no scientific or medical evidence to suggest vaccine for influenza would cause or exacerbate tic activity. Situations such as these may suggest correlation, but correlation cannot be considered as causation. ( favorite topic of our colleague, Dr. David Baxter)

                  Just because a certain event precedes the emergence of some symptom does not mean that event caused the symptom. If you eat a hot dog and the next day start a cold, can you conclude that hot dogs cause colds?

                  Vaccines have come under a lot of unsubstantiated criticism for causing a number of problems, so it's easy to want to point to a recent vaccine as the possible culprit.

                  You may find this related article of interest: Deadly Choices about Vaccination

                  as well as: On correlation vs. causation: The dreaded tomato addiction
                  Steve
                  TouretteLinks Forum

                  Comment


                  • #10
                    Re: Sorry this is so long. But hi!

                    Thanks Steve! I needed to hear that I really appreciate you.

                    Comment


                    • #11
                      Re: Sorry this is so long. But hi!

                      I did research years ago on a few things to present to a nursing class, before my kids were diagnosed. I presented Tourette's to the class, and although now the info might be outdated, at the time a genetic component was possible. A higher % of siblings and children of touretters were more likely to have Tourette's than people who had no known relatives with tourettes. I think most people that have read up on this would know that. But Tourettes is a diagnose that was not well known before the 80's or 90's, am I correct? Its possible that people could have relatives that were just labeled 'bad' as kids when they may have had tourettes?

                      I remember looking at the autism/vaccine connection. At that time it was determined it was not conclusive. Some medical professionals felt that it was coincidental that signs of autism were made more evident at a certain age, and that the immunization schedule overlapped this. Maybe similar for other neurological disorders?

                      I noticed differences for my own son when he started on solid foods (his food allergies were suspected but negative originally but testing was positive years later!!!) Changing his diet made more of a positive difference than medications, in my opinion. I think we need more research on what allergies can do neurologically-food, vaccines, environment. The cave mans diet (literally eating unprocessed food only) premise is that if food is made different, we will not know the full effects of how it affects people until we look at a large time span. Maybe there is something to that idea for food and other things too.

                      Steve, your post was very objective, and helpful.

                      Comment


                      • #12
                        Re: Sorry this is so long. But hi!

                        Momwith2boys,
                        I have heard- but am not sure if this is accurate that one may be more likely to suffer with mental illness if diagnosed with TS...anyone know if this is accurate? I know that my paternal Grandfather was schizophrenic as is my Uncle on the same side of the family. I did make some calls to ask if anyone had ever noticed either of them with "strange" habits or tics. No one ever did that they can recall- but you are right, it was so long ago and so little was known about it then.

                        Also, I started wondering if there was a possibility that me being sick during pregnancy could have caused her to have TS+. That may sound silly but I admit it has crossed my mind. I had a rare pregnancy liver disease called ICP basically Cholestasis of pregnancy. It goes away after your child is born but can cause low birth rate, meconium staining, low heart rate, death as well as maternal fetal hemorraging. I was on meds while I was pregnant and when my daughter was born she did have a low birth weight, her heart rate dropped to the point that they almost did an emergency c-section, there was substantial meconium staining and she was jaundiced. I have wondered if me being sick or the meds I had to take while pregnant could have caused her to have TS. It never crossed my mind until tonight and I started reading about ICP - more is known about it now than it was then so I was hoping I could read more about it and affects on the child after the child is born. I did not really find anything.

                        I suppose it does not really matter how or why my daughter has Ts- I do hope and pray my son does not present with it but they are the loves of my life no less I just wish I had answers as to where it came from- out of curiousness. With that being said, my
                        does not know his biological father and we are told no one knows anything- so maybe he had TS...I guess we will never know.

                        Comment


                        • #13
                          Re: Sorry this is so long. But hi!

                          Originally posted by poshpoodle
                          I have wondered if me being sick or the meds I had to take while pregnant could have caused her to have TS
                          It is not uncommon and is understandable that parents worry that "something they might have done or not done" could be the reason their child has been diagnosed with Tourette Syndrome. As I explained earlier Tourette Syndrome is a genetic disorder, carried in the genes of some people, which are expressed when a specific factors occur.

                          Originally posted by poshpoodle
                          I have heard- .......that one may be more likely to suffer with mental illness if diagnosed with TS
                          It's an interesting question, and one with which we have to be careful about not reaching unsubstantiated conclusions. While some people diagnosed with Tourette Syndrome have a greater likelihood of being diagnosed with associated or co-morbid disorders like ADD, OCD, anxiety or depression, Tourette Syndrome is in no way a predictor of having any other psychiatric disorder.

                          Perhaps with the exception of anxiety disorders, people with Tourette Syndrome are probably at the same risk of developing any other illness or disorder as the general population.

                          However, a study published in the medical journal The Lancet February 28, 2013 reports that autism, attention-deficit/hyperactivity disorder (ADHD), major depression, bipolar disorder and schizophrenia may all share common genetic risk factors.

                          There is no suggestion of any link to Tourette Syndrome, and genes are not predictors of developing any of these disorders, but ongoing research my bring us to a closer understanding of how genetics along with environment determine how any of these disorders affect us.
                          Steve
                          TouretteLinks Forum

                          Comment


                          • #14
                            Re: Sorry this is so long. But hi!

                            I had severe morning sickness and was put on phenergan. I had it for 4 weeks. I have thought about that too. My son weighed 7lbs 3oz and was born at 40 weeks via csection. I had a 3d ulta-sound and they thought they saw merconium but it was just the skin sloughing. I was induced at 40wks but failed to dialate. I was a 2 week late baby at 7lbs and 13oz and my husband was a 2 week late baby at 7lbs and 13oz. I often think he should have stayed in there 2 more weeks.
                            I have OCD for sure and my mind wonders to every negative possibility. I will be forever searching for that definitive answer.

                            Comment


                            • #15
                              Re: Sorry this is so long. But hi!

                              Geneva,

                              I have OCD for sure and my mind wonders to every negative possibility
                              Having followed numerous online discussions with people dealing with OCD, you may find, as many others have, this discussion thread outlining "Brain Lock - The Four Steps" by Dr. Jeffrey Schwartz to be helpful.

                              OCD is a medical condition that responds to treatment, and behavioural therapy teaches approaches to overcome the urges to do compulsive behaviours and ways to cope with bothersome, obsessive thoughts.
                              Steve
                              TouretteLinks Forum

                              Comment

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