Sydsmom

We went to a DAN doctor and she gave us a list of supplements. Some I get from her office and some I order from Kirkmanlabs.com Theyare very reasonable in price. They have a great multi vit. Caroline - how often are you taking the MB12. I just replied to you re: the MB12 and it hit me that we only give Sydnie 2 shots a week. Just wondering if you're doing it more often. Lisa

When I read these posts I immediately flash back to a time when this was all soooo overwhelming to me. It breaks my heart. But we can't stay in that place. I know for me I often look around at my own friends and see the diabilities their children or other family members have and think "If my daughter had to have something, I'm glad it's TS". It seems every family has something to deal with. Irena - you are so on the money with giving it to God. He is bigger than all of this and it was allowed for reasons we may not ever know. For me, it keeps me clinging to Him so that's a good thing. Doatline - please hang on to the fact that good days are ahead. Keep searching for a good doctor - you're on the right track with your thinking. I've often thought the same thing, more doctors need to mix mainstream med. and alternative. I hope today finds you feeling better. Take care. Lisa

In our family the stress reduced greatly when I learned to deal with my stress and try to not project it onto the kids. So the #1 thing I did was quit working. I'm lucky to be able to do that. So for us, it first started with me looking at myself and what I was causing. For both my kids - who are both worriers too - when I see them getting worked up we stop and sit and talk about things. We pray a lot and "give it up". Sometimes for my younger son we imagine that we are "blowing" the worries away. Sounds weird but it works for him and gets him laughing. Other times for my son I'll have him just full on punch his pillow. Yes, some may think it's violent but he doesn't punch anything else and I've made it a safe thing for him to do and let go of frustration. Again, after a while he usually ends up laughing because he finds it silly that he's punching his pillow. I also try hard to not over-schedule them and often make choices to not do something because it will be too much. With Syd the other night at the book fair when she started to get overwhelmed I just ignored it. In the past I would over analyze and stress her out more by trying to change her and how she was reacting. I didn't react and she ended up being ok. I think Chemar's methods sound great and should try them with Syd. I'll sometimes tickle their backs to relax them too. Unfortunately, we can't shelter them as you stated Kfen, but we can look for ways to aid them in dealing with it. Lisa

For my daughter it's definitely stress and large crowds. At her back to school night last week there was a Book Fair and it was so crowded and so many people and I think she was a little nervous and a little embarassed to be hanging with mom and she had a little melt down. Her tics came out in full force. After we got home and she settled down all was ok. Back to "normal" meaning some subtle tics that I hardly notice anymore. They are there but subtle. Lisa

Kim, That's some good stuff. Thanks so much for your time in posting all this great info. It is appreciated by myself and I'm sure many others!! Lisa

Kim, I just had to comment on your post. I've been hoping Sydnie would take some responsibility (12 yr.) and that I wouldn't have to "nag" her about her diet and supps. This past weekend was busy and I didn't remind her at all to take any of her supps and so of course she didn't. Sunday night she was complaining that she had a bad stomache ache. I kept my mouth shut and thankfully my husband said, "Did you take your supps at all this weekend?". No. "Do you see the effect on your body?" Yes. So she sees how she feels but still doesn't always remember to take them. I'm hoping one day it will kick in with her. Maybe when she's in her 20's?? I do know when I was very, very strict with her diet she became very, very angry and hostile towards me. When I let up a little she relaxed a little more and she does ok now. Still has 2 tics and thankfully right now they aren't too wild. We added Taurine a few months ago and at that time she had 4 big ones going on. I'm wondering if it's now helping. Ok - just had to comment. I thought you were right on with what you said about older kids. Especially if their condition isn't too bad. When I look around at all the families I know I see each family has a member who has "something". This is what we have in our family. Lisa

Hi Flower, My friend is a nutritionist and he advised us to stay away from soy. I don't remember the reasons but I remember it's not really as good for us as is being advertised. My 12 yr. old drinks rice milk. I've had it with my cereal a number of times and it's pretty good. I actually prefer it to normal milk. Kim gave you some great advice. Just know it's a journey and along the way you'll find something that helps, some things that don't and you'll continue to find your way and the "fog" will start to clear. Goodluck to you. Lisa

Giselle, I know EXACTLY how you feel. Last fall my 8 year old son (no signs of TS so far) was having bad rages and telling me through tears of his own that he was hearing "voices" yelling in his head. Fear gripped me too. The first thing I did was pray. That's just how I approach all the problems in my life and the lives of my children. Prayer for wisdom brought me to this site and all of the knowledge I've gleaned from here. Brandon and I both prayed and I told him anytime he heard those voices to pray. The 2nd thing I did was make an appt. with a psychologist. I was terrified to tell her that Brandon was hearing voices - but I did and asked if she thought he were schizophrenic. Her opinion was NO. She said, if you told me he heard voices from say his alarm clock or something else then yes. That brought me some comfort. As she dug, we found that Brandon was so frustrated and angry at the way his sister has treated him his whole life. Until we started these natural remedies with Syd her depression and anger was bad and she took it out on Brandon. Also, last summer my husband's 16 year old nephew stayed with us for 6 agonizing weeks. He himself was full of anger and rebellion and treated Brandon badly. The poor kid couldn't take it anymore. After sharing with this psychologist, I could see the pressure and everything just start to lift from B. He saw her 4 times and told me he felt better and didn't think he needed to talk with her anymore. She felt they were good too. He sometimes has rages but it's if I've let him have too much sugar and when he's in them we pray and sit and talk to try to dig and find out what's really bugging him. He has never mentioned anything about the voices anymore. I've asked and he says he hasn't heard them. I hope this brings you some comfort. It may not be what you initially think. Lisa

Caroline, You said something that I hadn't heard before. Sydnie has always had (and still does) this kind of New York accent and she says her R's differently. (We live on the West Coast far from NY) Everyone has always commented on her "accent". It seems to be wearing off a little or maybe I just don't notice it anymore. I never put it with Tourettes. Very interesting. Lisa

That's great about the mushrooms Caroline. We tend to celebrate every achievement don't we - and we need to. Things that others take for granted. What country do you want to go to? We sponsor a girl from Uganda. Just wondering. I hope you continue to have positive results. Lisa

I'm so sorry to hear that. I wonder if you had a prescription if you could order from our doctor in Los Angeles? I do my ordering through the mail. www.Mcguff.com is the pharmacy name on the bottle. We have been doing for 1 1/2 weeks. She seems to be in better spirits. Not as defensive. Nothing else has changed so I'm wondering if it's the MB12? Her tics are down to 1 lately. We'll see. I just know when my 12 year old is happy - we're all happy. Again, sorry to hear it didn't work for you Carolyn. Lisa

I hope that works for you. We just got our new order in and will start Sunday. We are anxious to see if there are any improvements since (I think I stated before) we started everything at once last May which means we're not sure what's caused positives and what hasn't. So - will let you know if a few weeks what changes if any we see with the MB12 back in the picture. Lisa

Way to go Carolyn. So glad you posted the experience. I'm sure you'll just get better at all this and become a very loud and much needed voice for TS. Thank you for stepping out and being a voice. Lisa

I just thought of something Carolyn. Does your MB12 store in the refrigerator? We store ours in a dark cabinet with foil around the bottle per the doctors instructions. That may be the difference.

Carolyn, We have been doing MB12 but ran out in Feb. and hadn't been able to order any yet. (Mostly $$ things have come up - like the cost of her tutor) But I'm going to order more....I notice a difference in Sydnie and it's little things, mostly behavior. She does have an extra tic, but it's hard for me to pin point but we notice little differences. We see a doctor in Los Angeles, her name is Dr. Hirani and we order the MB12 from her. If you're having a hard time finding it, let me know and I'll email aunt Ann (or you can) and she'll know. Once she's back on it - I'll be more aware this time to note the changes but my husband who usually leaves all this to me mentioned he noticed a difference too. And regarding if it hurts, not normally. My husband gives her the shots and most times she doesn't feel a thing. It's when they both are tense that she complains of it hurting a little. BUT... she is a 12 year old drama queen P. S. What is the date of the rally?? Lisa

Carolyn, I emailed my aunt and I think she'll be at the rally too. She said to email her with any questions or anything. Lisa

This was a different doctor than the one Sydnie went to as a baby so she wasn't listening to me when I told her about the records. I don't know what kind of tetnus it was. I didn't know there were different kinds. She just kept saying because of the area we live in and she needs all these shots. I did email my aunt this morning and she gave me some good advise based on things she's learned along the way. So, I feel a lot better. She did say that any shot she gets that I should give her extra A, C, E and glutathione a week before the shot. At this point I think I will go ahead with Hep. A and the TB. I feel a lot better and am gaining strength in learning to stick up against the doctors. My husband wants to switch to another doctor for Sydnie - he doesn't like this lady's attitude - nor do I. We're hoping to find one that's a little more open although I know it will be tough. Thanks so much for all the info and questions Kim. You're teaching me a lot in this area - even if you're just a few steps ahead of someone, you're still a few steps ahead and able to help so thank you. Lisa

I'm still struggling with this whole issue too. We took Syd to her normal pediatrician for a physical and she is highly suggesting the meningitis (sp?) vaccine, Hep. B and Hep. A. She said because of the area we live in she is strongly recommending them. So, do I risk giving her the vaccine and her symptoms getting worse or do I give her the vaccine and leave open the opportunity for her to contract meningits and hepatitis? Ugh!!! She's doing pretty good these days. She did get a tetnus shot 2 days ago and I haven't noticed too much difference in her. Lisa

I don't know of any issues but I just wanted to say "Way to go" and encourage you on this journey. Thank you for being a voice for those with TS!!! Can't wait to hear how it goes Carolyn. My aunt is very invovled in alternative issues with autism but knows tons about everything and has also been to Washington and other conferences. She speaks now at many of the conferences. If you want to email her and ask her if she knows of any legislation issues I know that would be ok. Her email is anagramy@bellsouth.net and her name is Ann. Goodluck!! Lisa

I know some of you are from Ca. This event will be held in So. CA and my aunt sent it to me telling me both of these guys are wondeful!! Just wanted to share!! Dr. Jerry Kartzinel & David Kirby Autism & Medical Breakthroughs Dr Jerry Kartzinel Dr Kartzinel�s practice is solely devoted to the research and treatment of Autism and other neurodegenerative disorders. His approach includes a comprehensive history and physical exam, and laboratory investigations that seek to find what is biologically different in a child. Once found, he implements therapeutic interventions and monitors closely how they affect restoration of health and behaviors. His current research interests include quelling chronic inflammation and the augmentation of the methylation pathway. More info www.thougthfulhouse.org Dr Kartzinel will outline COMMON MEDICAL PROBLEMS & TREATMENT OPTIONS FOR CHILDREN WITH AUTISM. David Kirby Author of the groundbreaking book �Evidence of Harm�. David Kirby has been a professional journalist for over 15 years, and has written for The New York Times for the past eight years. Kirby was a contracted writer with the weekly City Section at The Times, where he covered public health, local politics, art and culture, film and theater, architecture, zoning and land use, among many other subjects. More info: www.evidenceofharm.com David will present the findings from his book and the latest news. Important information and guidelines from this seminar are for both PARENTS and Physicians- More special guests will be announced in the next week Date: Saturday April 29, 2006 Time: 9:30am � 4:30pm (lunch on your own) Location: Vineyard Newport Church � 102 East Baker St, Costa Mesa, CALIFORNIA REGISTRATION before April 20th: Parents: $35 per person / Professionals $50 per person After April 20th and On-Site: $45 per person - PARENTS / $70 per person PROFESSIONALS - Registration: Please make your check out to TACA Mail to: TACA � Medical Seminar PO Box 12409 Newport Beach, CA 92658-2409 Or register online at : http://www.tacanow.com/shop.htm If you are MAILING YOUR REGISTRATION: BE SURE TO INCLUDE YOUR INFORMATION: Name of each attendee Email address (confirmation will be sent via EMAIL ONLY) Mailing Address, City, State, ZIP Code and Phone Number Exhibitors: This important seminar will also offer exhibiting opportunities for vendors. Please contact Lisa Ackerman at 949-640-4401 for more information. Babysitting: Unfortunately no babysitting is available for this event

Thanks for your info. I'll let you know. I know out here Syd's pediatrician highly recommended a Hep. B shot 2 years ago. I obviously ignored the recommendation. I had to leave a message with the doctors records dept. so I'll wait for their call re: the dates. I read on another board - an autism board 2 moms who said coincidentally after receiving the Hep. B themselves as adults they came down with an autoimmune disease. It's all so horrible. I'm starting to re-think the shot and get a waiver. I've heard nothing about the Meningococcal yet. I hate that I was so trusting of the doctors and the vaccines they pumped her with. Thanks again!! Lisa

Kim, I'm really glad you asked me this question. I hadn't even looked at the immuniztion card - I stupidly just received the notice and figured she needed this shot. I called her doctor we see regarding tics and she said it should be fine. But - I just went to her immunization card and noticed that 3 Hep. B shots are recorded although the first one is dated (handwritten) 2/94 - A MONTH BEFORE SHE WAS BORN. The next one is dated a month after she was born and the 3rd one at 1 year of age. So - what do I do with that? I'll call the doctors office and have them pull her file and try to figure this out. Thanks for the prompting to ask me that question so I could get a handle on it now. Lisa

I also live in Ca. and my daughter needs Hep. B for 7th grade next year. I called the natural doctor we see and she said it should be ok - that CA has taken Thimerisol out of the vaccines. I feel better now about getting her the shot and she will get it next week. Lisa

I found myself sobbing at first. Mostly because my daughter often says she wishes and prays all the time that she didn't have TS just like Emily did. We also saw some of Syd's tics in Emily and it was weird seeing someone else do the same thing. I was overwhelmed with gratitude that Sydnie's tics aren't as bad as Emily's were and hoping they don't ever get that bad. I'm glad she found relief but also cringed at the end when I heard about all the medications. My brother and his wife were here visiting and watched it with us and it did open their eyes to a little of what goes on with Sydnie. They've always been supportive but didn't really understand so that helped a little.

Hi Brenda, My daughter has struggled with moodiness too. Since eliminating sugar (she gets a sugary treat once a week), artificial colors and dairy she has been so, so much better. When she has too much dairy she gets mean and nasty. When we were on the yeast free diet she was really good but she refuses to do that anymore. She's still a little moody but I pick my battles - she just turned 12, so what's hormones and what's from the TS, I don't know. She's been on the supplement program for 10 months now and like I said, things are better. I think you just have to find what your child's triggers are and stick to that program. I wish you luck. Stay in the game and it will get better. Lisa