adelaide77

Hi Julie The doctor's appointment went well, of course Jack didn't have a single tic the entire time we were away! He ordered alot of the tests I asked for (haven't had the results yet) and advised me to take Jack off gluten and dairy, sugar, color and additves. I have done that and he was amazing for about 2 weeks, hardly noticed a thing. And then all of a sudden they just came back, out of nowhere and haven't stopped since. I feel a bit stumped. I've just ordered a hair analysis and hopefully the results will give me a bit more information. I notice his tics are really bad if he is hungry, I'm sure he's hypoglycemic - I had a blood test done for this but we weren't informed that you needed to fast for it so the results are false negative. I'm not wanting to go back to our doctor here (yes, only one choice on the entire coast!) as she treats me like a neurotic crazy person and dismisses any notions or ideas I have towards Jack (who of course has never shown a single noticeable tic in her office!). We also have had 5 observations from CAMHS where he didn't exhibit any strange behaviour whatsoever, so I think they think I'm being a bit neurotic as well... Do you wonder if your son's tics are allergy/seasonal related? Do you know if the hair analysis shows anything like that? I just wonder for us as Jack's tics always seem to pick up in Feb/March and continue for the winter, and he barely has any signs of them in the spring/summer. I can't remember if I mentioned but when we went to Canada last May he wasn't ticcing, but he looked tired, baggy eyed, his skin was bad and he had a sore on his lips (quite a big one) that had been there for over 2 months. We arrived in Canada and he just glowed after being there for just a day. The difference was amazing. I would love some tips on good lunches, I'm really struggling with that one as well. We haven't cut out eggs, but I wonder if that could be a culprit too (although then he would be living on broccoli and rice cakes...). How did your night in Wellington go? Hope the hotel made him something nice! Kristen

Thanks everyone. We can't really afford to do any of the other testing, so I"m hoping hair analysis will point us in a good direction an d make the elimination diet much easier for us!

Hi Kristen, I agree with all the other postings. It confirmed what we already suspected (gluten, dairy) and added a few surprises: pineapple, mushrooms, pickles among the culprits. I would recommend it. Eve Thanks everyone. We can't really afford to do any of the other testing, so I"m hoping hair analysis will point us in a good direction an d make the elimination diet much easier for us!

Does anyone recommend getting a hair analysis done? I am having trouble getting support or information due to where we live, this forum is my greatest asset. The woman who runs the health food store in the next town over has told me I should get a hair analysis done on my son, however I have heard mixed reviews about it. Any thoughts are greatly appreciated, I'm feeling a bit lost!! Also for some reason I can't reply to private messages to this or emailing is the only way I can reply. Kristen

Hi everyone Thank you for the replies. I'm definitely not using the forum correctly as I just stumbled upon your replies by default! I have made some appointments for some tests since then, and have been doing ALOT of reading. It's ridiculous! The more you read the more there is to read. I am definitely feeling very overwhelmed. Julie - I live in Ross, a tiny town on the west coast, SI. I have made an appt with Rodney Ford in chch for the 10th of April. I'm hoping he can point me in the right direction of narrowing down my massive lists of tests I want my son to get done. I'm thinking the main ones will be blood (allergies), heavy metal (there is a lot of coal burning and gold mining around us), and stool samples for yeast. Have you had any of these done yet? Do you use a DAN doc in NZ? I have a friend down the road that has started using one, but he's so expensive they can only see him(via skype) about once a year so this option is def out of the question for us. I should note to you that I'm Canadian, and every year that we are able to fly back to Canada for a visit my sons outward allergy like symptoms COMPLETELY disappear and he just glows. Weird isn't it? Allergic to NZ. I'm wondering if it has something to do with the housing standards and the mold, or the log burners. I guess we'll find out in time. I'm reluctant to start any elimination diets (minus throwing my microwave out the window and omitting sugar) until we get some test results done - apparently you can skew the results if you alter your diet?? Has anyone tried a yeast free diet with nystatin? Or colostrum supplements? I started my son on some supplements and a probiotic, but stopped with the vits because although they had everything in them that i was looking for they also have about 60 ingredients that I know nothing about. I got them from the health food store and the woman who works there also has a son on the spectrum, but you never know. Since stopping sugar, food coloring and additives my son has been ticcing a bit less, but nothing amazing. He has also been having these amazing mood swings which I'm finding really difficult to deal with. Thanks again for all your help. Kristen

I have never used a discussion board before, but this seems to be the best place for information on tourettes that I can find. My son is 5, he has not had an official diagnosis as of yet (he has been seen three times for observation and there were no tics present during the observation - murpy's law I guess!) but I am almost 100% certain this is what he has. They have never been very noticeable to anyone but our immediate family until recently. He does some very loud breathing and sniffing and runs his hands across his face or places his had over his nose and twists his head to the side at the same time, sometimes so vigorously he rubs his face raw and can't speak for several minutes. I'll ask him a very simple question and he will tic for what seems like hours, only to blurt out 'yes!' at the end of the event. The last few days he has been doing it even while eating or drinking and spilling food and other things all over himself. I worry a lot about how severe the tics will get over time - do they slowly progress to more violent outbursts as they get older? He has just started school full time and I think this is what has triggered the more intense tics (they were just vocal noises prior to this). His teachers are very open to discussing it, but also have no information or prior experience with Tourette's. He goes to a country school, there are 14 kids ages 5-11 in one classroom so as you can imagine it is quite hectic at the best of times. there is also one 11 year old with autism in the class, and another with sever adhd - my son seems quite normal and quiet in comparison plus there is not a lot of time for observation. I live rurally in New Zealand and I'm having trouble finding support and information over here. There is a wealth of information on the internet but it is all very overwhelming, I can barely figure out where to start. Definitely with diet, I would love any suggestions if anyone has the time to help me with this. I also don't know anything about PANDAS/IVIG etc - is it really that easy that you can get a positive strep test and go on some antibiotics and see a complete miracle? My son is a very bright social little creature, and seems very happy. He does not seem to have any other noticeable problems as of yet. Any help or even just someone in the same boat to talk to would be greatly appreciated!! Kristen