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Thread: Sorry this is so long. But hi!

  1. #1

    Default 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. #2
    Join Date
    Jul 2011
    Location
    Georgia, USA
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    287

    Default 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.

  3. #3
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default 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.

  4. #4

    Default 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.

  5. #5
    Join Date
    Jul 2011
    Location
    Georgia, USA
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    287

    Default 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.

  6. #6

    Default 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.

  7. #7

    Default 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.

  8. #8
    Join Date
    Jul 2011
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    Georgia, USA
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    Default 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.

  9. #9
    Join Date
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    5,939

    Smile Re: Sorry this is so long. But hi!

    Quote 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

    Quote 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

  10. #10
    Join Date
    Jul 2011
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    Georgia, USA
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    Default Re: Sorry this is so long. But hi!

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

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