September 27, 2005, 02:27 PM
Totally OVERWEALMED...any help?
We are wondering if anyone can help us or give us some advice? Our 11 year old son has tourette's and is Tic'ing constantly. We are extremely overwhelmed trying to research and help find relief for our son's Tourette's Syndrome. He seems to be going from one tic to another and it's driving him literally crazy!!! He first started getting tics when he was 7. He started eye blinking and crunching. It's moved on to many, many kinds of tics including some of his worst stomach convulsions every 3 to 4 seconds throughout the entire day. ( The stomach cramps my son would get were unbearable ). Recently he is constantly wiping his head in a violent motion. This tic is seen by others at his new school (in Middle School now) and he is VERY self conscious of it and embarrased. He moved to a school where he hardly knows anyone, although he is quickly making freinds and is a very kind, well liked boy. He goes on crying spells with my husband and I ....."why do I have to have tics, I hate myself, everyone stares at me". He is an A student, very intelligent, well liked, very kind and sociable. This morning he was in tears saying he was SO TIRED and didn't want to go to school... I knew something was up... just before he left he told me in tears that his teacher was moving the children's desks around today and she was going to put him at the front of the class, (because he sits beside a friend who has learning disabilities and helps him take notes, this boy has to sit at the front to hear) Our son does not want to sit in the front of the class, becasue EVERYONE behind him will see his trashing his head around!! I phoned the teacher before class started and she is going to figure it out... very supportive. He has been getting VERY BAD HEAD ACHES from his head thrashing.... WHAT DO WE DO to HELP HIM???? My husband and I feel TOTALLY HOPELESS!!! It takes forever to get into seeing a specialist... that is if we could even find one!!! We would travel anywhere for him. Our almost 9 year old daughter also has severe learning disabilities, that we deal with everyday. I am so thankful I am able to stay home (home business) and tutor and help her, and be involved at her school... it truley has been an emotional rollar coaster with everything we have had to go through with her to get where we are today. Now we are starting from scratch with our son... very OVERWEALMING!!
Between the ages of 3-6 our son had multiple strep infections, tonsolitis, night terrors, sleep apnia. Multiple trips to the doctor trying to find out why in 14 months he only gained a quarter of a pound..... We finally realized his sleep apnia's was causing him to stop breathing for up to 30 - 45 seconds, sometimes even longer, throughout periods of the night. After video taping our son not breathing while he was sleeping they finally agreed to remove his tonsils and annoids. You would not believe we would sit in his bedroom watching him sleep and he would be gasping for air not being able to get anything in. It was the scariest thing to watch your child go through.
After removing his annoids and tonsils believe it or not our son gained 5 pounds in 4 weeks. He has always been a smaller boy compared to other children his age.
Generally he is a very healthy eater. The research we have been doing show's there is some vitimin and mineral defitiocies in children with "TS"... like magnesium and Calcium. Although we have a hard time getting him to drink milk. Also we are learing someting about Overgrowth of Yeast "candadia". Generally we eat a very balanced diet consisting of pasta, breads, chicken, veal, vegetables, fruit... although not as much diary.
He does have some allergies ie: grass, trees, dust mites(far), dust mites(Pter), Aspergillus, Helmithosporium. Grass and trees being the worst.
Does ANYONE have any OPINIONS or ADVICE on...
candida, yeast overgrowth, calcium and magnesium deficiency.... how would we test for this? What tests do we ask for? We were considering purchasing some vitamins but we don't know which would be best suited for our son? As loving parents we try so hard to raise responsible, loving, respectfull children. We just want to do what's best for them. We are dedicated to finding them help some way, some how.
Any advice would be MUCH APRECIATED! Thank you SO MUCH in advance!!
Tracy and Guy
September 27, 2005, 03:39 PM
Totally OVERWEALMED...any help?
Welcome Tracy and Guy!
Glad you found the TSFC Forum. Our Forum members should have some insights and suggestions for you over the next few days.
It is understandable that a diagnosis of Tourette in a child can be overwhelming, and by collecting knowledge about the disorder, you can provide yourself with the tools to help your son.
In addition by making use of local support services as well as our Forum, you can meet people in similar situations who can share their own experiences and strategies.
Have you made contact with any local support services? In what Province/State do you live?
Has your son been evaluated by a physician with a professional interest in Tourette Syndrome? As you may know, not all physicians have expertise in the disorder, so you must do some local research to identify one who has training in Tourette.
You mentioned the difficulties in seeing a specialist...have you succeeded in finding someone?
Is your son taking any medications at this time to control any of the co-morbid conditions?
As you may know, the repertoire of tics varies over time and waxes and wanes depending on stress and other factors. It is not unusual that your son's tics will change.
In performing your research, is there one specific topic you are having difficulty to learn about in connection with Tourette?
We can help you find some direction. Though it may seem overwhelming now, the way to manage the situation is to take one step at a time.
Take some time to look through the various Forum sections where various topics have been posted. Feel free to post a reply to any ongoing discussion...or if you think of something new, go ahead and post your question.
Looking forward to continuing this discussion with you!