Toms_Mom

I think like everything else we talk about on this forum, some things work for some and not for others. I tried the Bontech vitamins on my son a couple of years ago, and like you he seemed to do great on them at first. His tics were gone after a couple of days or so. Then as I increased them (now I think why did I do that?!) he got worse. I also bought the mag taurine supplement from them and tried that alone and his tics were the worse they have ever been. For some reason he seems to have a negative reaction to the mag taurine. He is 10 now and the only thing I do is the all natural, organic diet which seems to keep things under control so far. He also takes digestive enzymes(houston). This past week I decided to try omega 3 fish oil and he seems like he is tolerating it pretty well. I've always been afraid to try it because so many people on here have reported it made tics worse, but I'm hoping they will actually help him! Everyone seems to have different sensitivities so you might want to try something different with your daughter. Good luck!

My son had the same thing happen at his neurologist visit 3 yrs. ago. It scared me too. I asked him what was wrong and he said "he's fine- I can see a reaction" or something like that. I still wonder though what that means. I'm not sure if my son is pandas or not. He has a tic only disorder, although it came on suddenly with ocd at the time. He no longer has ocd, but a few months ago I took him in for a strep test during a heavy tic period and he tested positive. My ped gave him a 5 day course of antibiotics which seemed to help, but not sure what to do now. We live in SC and I haven't heard of any Pandas drs. in this area.

Hello everyone, I'm usually here to talk about my younger son, but today it's my oldest. He is 19 and going to be a sophomore in college. We've been talking and he is really concerned about his ability to focus in class. He says his mind starts wondering after sitting for 5 minutes in class. He has always struggled with his grades and teachers have always told me he is capable, but he needs to put in more effort. So it's been a struggle through the years, with my husband and I always on his back to try harder. Now I'm wondering if he might be right- he thinks he has add. He is not hyper at all so I know it's not adhd. His ped. wants him to see an educational psychologist and have an evaluation. We have an appointment for Sept. but in the meantime school is starting and I was wondering if anyone can recommend any supplements for him. Native remedies has a wide variety and I'm not sure where to start. I'd appreciate any input! Thanks, Mary

Debbie, I started the diet about a month after the tics began and saw definite improvement after 1-2 months. I don't remember any other illness at that time, but it's been so long I could be wrong. He's been on the diet for almost 2 1/2 yrs. We did try the GF/CF diet for a while, but it was so hard and I soon realized he did just as well on the Feingold- type diet. His tics have been relatively mild over the past 2 yrs. and whenever there was an exacerbation I could usually attribute it to a laxing of the diet. However, this last time I really could not figure out what was going on, so decided to try the strep test. I'm still not sure what it all means at this point of course. The main question I have is -can you have pandas with the only symptom being tics? He does not have anxiety/ OCD. He does have night terrors. And like I said before when this all began he had some anxiety/ OCD type fears. But that only lasted about 3 months thankfully. He did have nighttime bedwetting for about 2 years. But right now his main issue is the tics.

Thanks Cheri and everyone who has responded. My dr. is out of his office today, so I think I will call in the morning and see if I can get a prescription for the dye free azith. EAMom I will suggest the full tablet/half tablet idea if he feels 500 mg is too high. Thanks again!

Ok a little misunderstanding- my son can swallow pills- I called the pharmacy and they said zithromax does not come in the 200mg dosage and that the pills are coated in red too- so not sure what to do. He is 9 and I didn't realize until last night after picking up the med. that it was red colored. Faith, I won't cut in line- you were here first- haha! To answer your question I saw the first little head nod on Thanksgiving and it got worse from there. He is not severe or anything - I'd say more like moderate ticcing. I will definitely let you know how it goes. I guess for now I will give him the liquid. I have to say I felt a little silly taking him in to get a strep test when he looked perfectly healthy. I just sort of wanted to rule out the possibility of pandas. Still not sure what it all means. Thanks everyone for your input!

Hi all, As some of you know, I've been on the tourettes/ tics forum for the past 2 years or so. Lately I've been thinking about the onset of my son's symptoms and how they sounded similar to some of the pandas kids. Keeping it short- age 6 1/2 started having separation anxiety- obsessed with when I would pick him up at school etc. , fears over storms and going on trips, night terrors, night time bedwetting and finally a severe head shaking tic among others. Went on all natural, organic diet and fears and anxiety went away. Still had bedwetting, night terrors and the tics, although tics improved greatly. About 2 weeks ago my son started up with his tics again and I could not attribute to a laxing in the diet which is unusual. He has a head bobbing tic and facial grimaces. I found out a child in his class had strep so decided to take him to the ped. and have him checked even though he has NO symptoms of strep or illness at this time. My pediatrician is wonderful and agreed to do the rapid strep test and the culture. He also said we could do the ASO and d-nase if those turned up negative and another option would be to treat him with antibiotics if the rapid came up negative and see if we saw an improvement. Well to my shock the rapid test turned out positive! He wrote a prescription for zithromax 200 mg twice a day for a week and said hopefully we will see an improvenment in the tics. He is about 55 lbs. It is the liquid and I'm assuming it has artificial color and he has always reacted to that in the past. Do I not worry about that? Is that minor compared to the benefit of antibiotics? I am so new to this that any advice would be greatly appreciated. I'm also nervous after reading about all of the mixed results on this forum! Thanks, Mary

This is my son's time of the year as well- seeing blinking and nose scrunching- gets croupy too. It's always this time and then again in the spring.

Hi! My 14 yr. old daughter has had depression come on for some reason every fall (school maybe?) since the age of 11 or 12. The things I have done is 1) make her exercise almost everyday. All of my kids have played tennis since they were young so I just sign her back up for tennis clinics/teams right away. She doesn't always want to, but once she starts playing she really starts loving it again. I think this has helped her the most. The exercise combined with exposure to sun is great. I think any exercise outside would help. 2) I give her a good multivitamin and nordic naturals omega 3 (helps with mood) and 3) My daughter goes to a somewhat challenging private school and has struggled at times. Before 7th grade I talked to her principal and they were able to change her schedule to make her load a little lighter. She dropped a subject that was required, but not necessary (band) and that left her with more time to study for other subjects. She also repeated 6th grade math, which was fine, because she is still on schedule to take algebra 1 as a freshman in high school this year. I think finding out what is making them stressed and trying to help take away some of that stress is key. Maybe you have already tried some of these things with your niece, but hope this helps. Mary

Good luck to you Faith! I can definitely relate to you and how hard it is to control their diet as they get older. Supplements have not seemed helpful for my son either or else I am just not able to figure out what would work for him on my own. The only thing I am giving him are digestive enzymes before all meals and snacks. His diet is mostly healthy and organic, but like you I can't do 100%. He will sneak food when he can, kids at school give him junk, and we go out to eat about once a week. I can't watch him 24/7 and don't want to either! My boy is skinny too and very active- he will be turning 9 in August. For the past year I would say he either has no tics or when he does they are mild. I think the digestive enzymes are working for him, but I don't know this for sure of course or if it will continue to go this well. I am following all of the postings on Dr. Sims with great interest and really appreciate everyone posting their experiences. I hope all of you have success and will be praying for you all. Mary

Hey myrose, my little boy jerks in his sleep as well- more right when he's falling asleep and when he's close to waking up that I've noticed- makes me nervous too but I try not to worry about it too much. I've noticed my husband does the same thing and really has done so for as long as we've been married(going on 20 yrs.) and he's never had any kind of seizure. I have felt myself jerk too sometimes when falling asleep and have noticed my 13 yr. old daughter does it too, but none of us have seizures, or any kind of disorder- hopefully it's nothing to worry about. Mary

not trying to talk you into staying on Topamax or anything but... if she gains weight and has to go to a little higher dose isn't it all relative - I mean just like any med- for instance childrens tylenol- when they gain weight you have to go to a higher dose to make it effective. It doesn't make it more potent(right word?)- because their body requires more at a heavier weight right? I would be more concerned though if at her present weight you had to keep upping the dose to keep it effective. Just wondering..

Cheri, I just wanted to say thank you for all you do on here. I hate to hear that you still feel guilty about what happened to your son- you did the best you could at the time with what you were faced with. It's amazing to think YOU were the one who turned everything around for him and you had to fight doctors to do that! I cannot begin to imagine the suffering you and your family endured. I don't believe your son could ask for a better mom- you are his angel. Mary

Thanks for keeping us updated myrose and Mary! I still check in every now and then to see how everyone is doing. My son seems to be doing well, (keeping things mild) with the healthy diet for now. Supplements have not seemed to help so if things ever get worse I would consider meds, so I appreciate hearing others experiences with them. Thanks, Mary

For anyone who has had success with this combination, could you give me an idea of how much to give? My son is having the same onset of tics that seems to come on every spring. He is 8 and about 52 lbs. We are still on the organic all- natural diet with enzymes, but that's about it. How much b6 do I need to give? 25mg. or do I need to give 50 to see a difference? Thanks!

Digestive enzymes are the only supplements I give. He has never had a bad reaction to them. We use houston enzymes. I tried initially removing all the foods he was sensitive to per IgG testing and that proved too difficult. The digestive enzymes seem to keep the tics minimal so far. Whenever I have tried to add other supplements his tics have increased so I have given up on any other supplements besides enzymes. However, lately I have seen some tics poking through- the same thing happened this time last year and I think it has to do with the change of weather/allergies. I had to give him Claritin for a bad virus he had last week and the tics stopped. I'm still giving the claritin because I'm thinking that helped him. Mary

Just my 2 cents and I know a lot of moms do this differently, but I have always thought that after being in school all day kids need a break from the routine and need to get outside and burn off some energy- just have some free time to play. If I ever have to make my son do homework right after school(rarely) its very difficult. But if he's had an hour or 2 to play he's usually settled down and ready to sit down and focus on his homework. Which by the way I don't think should be much at his age- 8, he usually gets about 20 minutes. I'm a preschool teacher so I know what you mean about having patience when you get home after being with other kids all day. But just like I feel like I need a break for a while when I get home I think so do the kids. They need some time to relax. So maybe letting him play first and then homework might help?

I am with you all on this. My mother asked me if I was going to watch it and I told her " no I don't think I should" and I really don't think she should either. She is a worrier like me and I don't think she understands how bad ts can get. I hate that all you hear about in the media is the worst case ts and from what I have read about ts -in reality most cases are mild and symptoms can subside around 13 or 14. I would like to be positive and hope for the best, but its hard when these kind of shows and books come out.

Caryn, Thanks for the link to the slicer- I would love to get one. Do you slice all of your own sandwich meat? I spend so much on deli meat every week! I couldn't find the all natural ham at Costco. I am wondering if different stores carry some different products. We are in SC.

Thanks for everyones advice on the Wii. I am thinking you all have given me the right idea on how to handle it, by limiting his playing time. I think letting him play on one weekday and one weekend day sounds good- and of course limiting his time on those days as well. Really during the week on schooldays there isn't much time for video games anyway. And Faith my sister does the same thing as you- taking it away for punishments- it seems to work really well. Thanks again!

My kids are asking for the Wii for Christmas and I'm looking for advice. Have any of you seen tics as a result of playing this video game? Does it make a difference if they are playing the game on an LCD screen (which we do have). I was wondering since they are moving during this game does it make a difference- it seems like it would be better for them than the other video games where you just sit. Do they get less frustrated? When my son has played video games in the past after a while - about 20 or 30 minutes- he can get very irritable and frustrated to where I eventually have to turn the game off and then he just has a major tantrum. My daughter really wants the Wii fit, the other kids want the tennis and golf- I'm just not sure what to do! I would hate to buy this and figure out its not good for him and then have to take it away. Faith, I know you were wondering a while back if the Wii was effecting your son- did you ever figure that out? Thanks for any advice, Mary

Our Publix sells all natural Oscar Myer hot dogs- no nitrites. Applegate farms at Whole foods also are all natural. I want to try that ham from Costco Caryn! Did you get the meat slicer from Costco? Mary

Re the vocals- My son has had motor tics since age 6 1/2-some minor tics at 5 we didn't recognize- he is now 8- turned 8 in August -and has just recently started vocals. From what I understand sometimes they start with the motor tics and then the vocals come later.

Faith, I believe she was talking about multilple sclerosis(MS) which is more common in northerly climates. My father-in-law had it and he was from Michigan. From what I understand celiac is an autoimmune disorder, but is TS? I am also very interested in the probiotic question. Mary