CSP

Welcome Christy, I know all too well that sick feeling us parents go through. My son is the one with TS and for a change he has caused me the sick feeling. My non-TS DD has, but only because I sent her off to college yesterday, and miss her sooo much. So if I'm brief that is why, I can't seem to focus today. I would first start with a clean diet. Get rid of any junk, and I would have her tested for allergies first so you can get those out of her diet or out of the house as much as you can. Has lyme been ruled out? If not ask your ped to have that test done ASAP.You should see a neuro so he can check if the brain activity is normal. Take it slow because too much can overwhelm you. Start giving the epsom salts baths and research the supplement that have helped the children here and start out with one at a time to see if it has helped. Chemar has a great post on what helped her son with supplements. Hope Chemar posts soon, she is so good at adding things I have forgotten. God Bless, CP

Chemar, Well Jasmine oil must cost a lot, I was in 2 health food stores in my area any both do not carry it. Do you delute it with something before putting on your skin? I see your post says pure jasmine oil, I do not want to get anything that may say jasmine essential oil, but have systhetic fregrant components to it if I can't fine the NOW brand. CP

Chemar, This sounds great! Does your son like the tea in the morning, at night, or all throughout day? OK, Bonnie, I'll pick your brain when you come to visit. LOL

Bonnie and all moms and dads who share this hard to deal with tic. I can't tell you how much we all need to feel connected when it comes to vocals. I love the nails on the chalk board that is a great way to discribe how many of us feel. I used to wish I went deaf so I could deal with the vocals. I still have a hard time and I listen to music all the time. Sometimes I can't even follow a recipe when he is ticcing near me. This must be even harder for those who have only one child, I know I find a lot of relief in my girls and going out with them, (shopping) ect... I'm already wondering how I'm going to handle my dd leaving for college this week. I'm sad to think about how much she has helped me deal, and now I won't have her here. Some of the other things my husband and I do is take a walk after dinner, I take a bath every night and take time to read a book. I also just let him go and do the things that make him happy where before I would not let him do some things because the vocals got worse. I just leave and let him have that time even if he is really waxing. I think we all need to do what we have to so we can go on taking care of our family. I know my whole house was turned upside down when my son first started screaming. My husband would always tend to me and not our son and when I asked why he said, "He need me to be well more then our son. My father never cared what was happening to our son he would say to me, "He need his little girl to be OK" I don't know if that is a guy thing or if it was that my husband and father just knew my boy would be alright. Thanks for sharing... it is great to have the support so we all can keep going. CP

Welcome mrs. A, My husband has ts along with my son. My husbands tics are almost not noticable. He has no motor tics, only vocal words. He says "LOVE" or "BUDDY" depening on the gender of who he is talking to. He can sound like a "VALLEY GIRL" when they say "LIKE" after a word or two. When he is waxing I hear them more, but sometimes he does not say it at all. He says he feels they are habits now. My husband has a hard time with the diet canges and eats what he wants at work so unless your husband is willing to do the diet you may not see any results. I would ask if he is willing to give up wheat, dairy, and eggs for 3 weeks then introduce one at a time back in his diet. Be sure to add the wheat last. I did eggs first because it was the one food I needed most to bake with and breakfast was easier. Good luck, CP

Faith, I still cannot PM you? It says, "This member cannot recieve any new messages?" CP

Hi Bonnie, We have not done anything, mostly because he is so busy with the fire house and now a job we were hoping he would just calm down as he gets comfortable. We have asked him to take the epsom salts bath and that is a fight, (almost 17yo ya know) so we have not asked in the last week. I was proud of him he told the country club he had TS so they know and now I won't worry too much about that. I guess I feel like he just needs to handle this on his own and I need to back off on trying to keep him 12yo and taking charge of his body. I'm also weepy because oldest dd is going away soon to college. (sniff, sniff) That has kept my mind busy too. Hope we can get to together when you visit, CP

Hi Bonnie, Well we are dealing with our own little wax here. I just spent 5 days watching my nieces and he has been off the charts while they have been here. He also got a call from a country club he applied for job, and boy now he is so nervous he is ticcing like crazy. He will be taking behind the wheel soon so he is excited, he thinks he is getting a truck soon. We all went to the fair yesterday and he got that bad head jerk back while on the rides, I was so happy to have my little nieces so I could take them on the baby rides and I did not have to watch his head. I may have over reacted and wanted him to go home. We are dealing with so many things this summer with him I feel like we took a huge back slide. So feeling a bit like you do.lol I hope he calms down soon. Yours and mine. CP

If it that faith has a full box or am I doing something wrong?? CP

Welcome murms, I'm sure most of us have given Bonnie's supplements with out even talking to a dr. I did when my son was 12/13yo and the supplement made his vocals worse. It is not only Bonnie's supplements that make my son's vocals worse, just about most things I have tried have made them bad. His tic is vocals so that is the one most often we see the increase in. I'm so sorry he is dealing with this at 22yo we all have hopes our children will outgrow most of the tics. Is this the first time he has ever taken anything for the tics? How about diet, have you all tried diet changes? Is your son in college, or is he working? Just wondering what is causing the stress? CP

Very helpful, Susan and Peglem, I will remember this when we talk about the Crucifixion. I have a friend who has 2 boys with Aspergers and she would say that would be a problem for them as well. Thanks, Vicky, got a little scared there. Faith, hee hee. CP

My daughter did a science project on Carbon Monoxide at the end of the year, and since my son learned so much about fires he told her when couches and carpet burn they set off CO gases so I would say they are loaded with nasty stuff. CP

Vicky, I think you misunderstood me, I did not mean to sound like the church was asking me to deal with children with special needs. I was just trying to let you all know I was talking about children who have needs (ADD/ADHD...ect.) that can be overlooked as bad behavior. ( we have a class for truly special needs) It is the other teachers who were so excited to have someone with a child who had an IEP at school and could help understand children who are in need of accommodations. I was trying to educate myself with other co-morbid conditions since I only deal with Tourette's here at home. I'm sorry if I offended anyone with the way I worded my post. Thanks for the helpful tips everyone. CP

Good question, Vicky, Yes, only on Monday right after school. CP

Hi All, I'm hoping you can help me. I will be teaching a Rel. Ed class in the fall at my church. I was told that since my son has TS and I understand a little about kids who do not have "special needs" in the sense one might think of "special needs." But more that I understand kids can need accomidations to help them learn. My son has TS only, we do not deal with ADD/ADHD, Aspergers, OCD, ect... so I was hoping you all could help me be a good RE teacher. (this will be my first year) Could you all tell me a little about your child and how do they best learn. I would love to have a stack of info so I can figure out what a child might need if their parents have not shared with us any DX their child may have. I don't want a child labled as a behavioral problem and the finger pointed at the parents for lack of discipline. I hope you all can help. Thanks CP

Hi everyone, Graduation was beautiful, and after some 300 hours of training it was music to my ears to hear the words "Firefighter" in front of my 16yo son's name. You all as well as the parents from the PANDAS forum filled my mind for a short while as I thought about all the heartbreak we put ourselves through wondering what will become of our children. I watched my son walk onto stage to recieve what looks like a diploma, dressed in blues with a badge on his chest, patches on his shoulders, and pins on the coller. My memory took me back to the year we spent watching our son scream every second. If only you all knew the magnitude of his vocal tics, you would understand how much hope I have for your children. The other thing I wanted to tell you all was he did not pass his firefighter 2 test. This test is not required to graduate, but must be passed at some point. What I thought you all would find intresting is we did not know since he has an IEP for school he could have had someone read the questions to him. We are setting this up for him after he takes 20 more hours of Firefighter 2 then retakes that test. He does not feel bad for failing because 16 out of 34 students failed this test, and since he was the youngest in the class he had never taken a test before where 3 out of the 4 answers are right only one is correct. Bonnie, looking forward to your visit, I'm sure my son will take your little buddy on a tour of the firehouse. CP

Faith, Anytime my son has an increase it is always in the vocal dept. Sometimes he will have a head nod but that is the last to start and the first to go during a waxing. The probiotics just like other supps made thing worse, some were really bad others just an increase that he would say he did not want to take whatever that was anymore. But he loves Kefir/yogurt so I always felt better that at least he was getting probiotics that way. Just to let you know my son had no reaction (bad) reguarding the tics with the nystatin, but we were about to start another bottle and my son did not want to do it again and he thought drinking coconut water and starving the yeast worked faster. The other thing I was thinking about was the heat this summer. I notice our son was better yesterday and the weather was cooler. I never even thought about the waxing for him could be the heat only because I thought it was excitment over graduating fire sch. coming up Thrus. And we had that BIG bright full moon this past weekend. So I see how it is almost too hard to pin point the cause. Glad he is willing to do the diet at this piont I too wouldbe afraid to start anything before school starts. Cp

Faith, You could do the diet to starve the yeast too. You know, no sugar, yeast breads, vinegar... ect. For my son it does always seem that getting everything from food does work best for him. He does the kefir/yogurt, gets a rainbow of color in his diet, drinks mostly water and raw milk. Aug. was always a problem for our boys do you think it's allergies too? CP

Hi Faith, Oh Boy! This sound like my son when ever we would try yeast stuff. Last one was from the Oregano Oil. He does get noisy with probiotics too. I do remember when my son would have the high pitched squeak it lasted about 2 weeks after we stopped the amino acid that caused the spike. I can't help with the cortisone shot but I think Chemar can, this sounds like something her DH did not do well with???? Hang in there I know how hard this could be before school. So why don't you try with the clean diet these last few weeks before school starts. Find all the clean food he loves and stuff him with that so you wont be worried about his weight. CP

Sorry I cound not get back to you yesterday, our power was out. My son had the tissue analysis done very early after his dx, so this info is about 3 years old. His body was in an alarm stage of stress and that stress caused the releasing hormones by the adrenal gland to put him in a both a slow and fast oxidation. His would experience lack of energy and sudden increase in energy. His dr. put him on vit A and C and E he was to take calcium, mag, and zinc. It seems your adrenal test and my son's is different that my info is not helpful. CP

Dut, I'll take a look into my stack of test and notes, and get back to you. CP

Just wanted to add if you would like to get omega 3's in your child without the fish oil caps, Vital Choice seafood on their web posts that one 6oz sockeye salmon has about 2000mg of EPA & DHA, and vit. D is about 1170IU. This is the only way my son gets omega 3's. Please know folks the omega3's would be much lower with FARMED FISH. (we all know not to buy that stuff right.) CP

My son did not do well on fish oil. I wonder if since Chemar said it comes from the liver if there is high amounts of tyrosine?? My son did not do well on some B vitamins that came from bovine and porcine liver or brain ect. I thought at the time it was because it was high in tyrosine which cause a increase in dopamine. Humm I wonder? CP

My son did this same thing with the fever in the beginning of his tics, not so much now. I really don't see much waxing or waning at all now he just seems to be the same all the time. My husband and I thought it was more of an OCD at the time, if he was sick he just did not feel like ticcing/OCD-ing CP

I may not be the best person to answer this question, as I have never even used marihuana. I think it would be best for you to educate yourself on the effects of marihuana on neurotransmitters and which ones marihuana stimulates. CP