Renee

Thanks for the link Ronnas! I really enjoyed reading everyones take on it there. Renee

Hi everyone, First let me say to Claire- I am so very sorry to hear about your son's illness. We all know that there is nothing more important in life than our child's well being. I will certainly be sending positve and healing thoughts for your son and your family. Now, I was just wondering if anyone else here saw this article "The Tiics of Tourette's Often Go Undiagnosed" by Jane E. Brody, New York Times on 01/18/05. I found it quite disturbing and have been meaning to bring it up here. I was on family vaca for 3 wks prior and so have been so overwhelmed catching up with work that this is the first opportunity to post. What I found disturbing was the lack of support stated in the next to last paragraph. "Dr. Zinner, however, cautioned against a common tendency for families to use a variety of alternative remedies and dietary restrictions, since none have proved useful." Wow! That was very upsetting to me as the article does mention using botox, Tenex, Haldol, and Klonopin - stating that there are side effects so Dr Zinner urges the use of the lowest dosages and goes on to state that due to waxing and waning - many months of "therapy" may be needed to determine their effectiveness. Obviously, Jane E. Brody hasn't been on this site where so many of us have "only" found help thru alternative and dietary restrictions and the medications they support we have all found the most unuseful! It is very dissappointing to see a newspaper of that status and read by so many people covering only the obvious easy find "tsa-usa.org & tourette-ca, and not doing just a little more research - as we all here have - to find real help. Thanks all for listening. Renee

Hi Susan, Well, I did hire a cook once when my son was first born. We found her simply by word-of-mouth thru our friends. She was not really an exceptional cook but she did appreciate healthy food. We probably only had her for a couple of months but she was a saving grace and worth every penny. If I were you I would list something like "personal cook" needed. I would ask that they be experienced in the type of cooking you are looking for - i.e., vegetarian, or macro-biotic, etc. Also, when placing an ad, I would not list my phone number but only email address. You can make up a temporary email address on hotmail in a few minutes and then request they send you resumes. I have had to hire numerous sitters and used Craigs' list to do so. I often am bombarded by people but find it's much easier this way than having people call me as I can weed out a lot of inexperienced people or those I just don't feel right about w/o any personal contact. Congrats on your plan. Being that you're a single mom I think it sounds great that you've come up with an option to help balance your time for you and your son. Everyone will benefit! Best of luck, Renee

Hi all, In response to Claire's quote from the website - Alternative Mental Health - I found the website VERY interesting. I did want to mention that on the site I noticed this under the OCD topic: "A word of caution --- Manganese supplements tend to aggravate Tourette's Syndrome, and can also worsen the symptoms of OCD." I was not aware that manganese could present these issues and just wanted to share this with others. Just a quick history: My son's tics had dissappeared completely over the summer and he was basically tic free for a little over 3 months. Then about a month ago his eye blinking began again along with a vocal tic. They have been present for about 4 wks and he also has had a cold/cough which turned out to be strep. He's now on anitbiotics and I think all the stress between the illness and the antibiotics have made it worse as he's also developed a little hop. I now have realized that after he received his first flu shot (Oct. '02) is when he developed his first tic - a sort of nasal expelling sound which we thought was related to sinus problems. We treated it with Flonase and using a humidifier and it subsided a lot. It disappeared completely by late spring 03. I gave him the flu shot again last fall '03 again (sadly, I had no knowledge of themerisol) -by around the end of Nov. the nasal tic began again. It subsided until around end of Jan '04 when he developed a vocal tic. That was when we first realized all this may be related to a tic disorder. His tic continued to diminish thru the spring and then we had none over the summer. I am very interested in the histamine test and also having him tested for heavy metals.. just in the process of finding the right doctor. Best to all and thanks to everyone for sharing your knowledge, Renee

Hi everyone, As I said - I will post our findings so: Last night we had our 1st visit w/ a pediatric neurologist. He said he would not catagorize our son w/ ts but w/a moderate tic. Said it affects about 3 to 5% of schoolage children - which doesn't seem like a lot but when you realize howmany schlage kids there are - it's a rather large number. He spent about 1.5 hrs w/ us giving about 1/2 that time to evaluating our son and the other 1/2 discussing our history and his observations/thoughts. As there is not any background in our family - well one but not immediate family member that we knew of {there's a cousin of my husband's who he remembers would shrug his shoulders often} he wanted to rule out strep. He's had experience of some children who harbored strep in their tonsils (which can't always be detected w/throat swab) and once they were removed they had significant improvement. Said he'd like to do some blood tests to rule out the strep. He explained that there's a part of the brain that memorizes actions - breathing, walking, jumping, language etc so that we don't have to re-learn these everytime we need them. This part of the brain is basically firing-off these signals and so the body does the action. He mentioned the dopamine prob. but he's NOT in favor of medication for tics unless they are really causing probs in school etc. - which so far they haven't. He's in favor of good nutrition/vitamins (not mega doses though) but didn't have much faith that would help significantly. He did observe/assess our son's behavior and as you all know too well - children with these tics often are accompanied by add, adhd, ocd & anxiety. He found our son to be a bit impulsive but nothing extreme. Stressed that we needed to help him understand the importance of being able to focus and stick with those things he finds tedious and frustrating as although his school is understanding and supportive of him in 1st grade - as they get older it will only get harder. We need to help him appreciate that learning is done best in certain environments/or with certain study habits as it can help him a lot in his school enviroment. Regarding how to help our son understand what's happening to him - although my son doesn't really see his sniffing as any real prob. - just a way to stop an "itch" he has in his throat - the dr. said just explain to him he has this habit that happens to him and there's nothing wrong with it. Some kids have asthma, some have speech probs., some need glasses - he has this. Not to make it a big deal - short & concise but also let him know that should anyone bother him about it he should let us know. He did say the majority of kids do grow out of these in their teenage yrs. He asked us to follow-up with him after the blood test for strep and if that's neg. to ck in periodically and let him know how he'd doing. I came out feeling - well pretty much the same - that I really need to find an alternative dr. I do believe there's something that can be done to treat or at least ease these tics. Thanks to all who've made me feel welcome here - to share and learn together. This community has given me an enormous amount of support - and I thank you all!!! Best, Renee

Hi all, Just found another link for finding an alternative doctor that may be helpful to others who are new to this too: http://homeopathic.org/find.htm There were a few listed who are M.D.s as well which I too must consider regarding insurance coverage etc. I will certainly keep you all posted here as to our findings. Best, Renee

Chemar & Claire, Thanks so very much! I'll ck it out right away. Best, Kim