faith
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I bought the Klair Lab product at a local health food store. I don't think they would carry that at a chain store like Vitamin Shoppe or Whole Foods. This was just an old fashioned health food store that sells supplements, foodstuffs and personal pruducts.
Faith
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Hi C.P.
Looks like we are playing on the computer at the same time. Noticed your post so just wanted to give you my rec on what we use.
I use Pro-Biotic Complex by Klaire Labs. It comes in capsules or powder form and is refridgerated. That is where they keep it in the store. It says:
Free of all common allergies including dairy, wheat, corn, SOY, yeast, gluten casein. No sugar, starch, mag stearate, artificials colors, flavors, salicylates, or preservatives. (5+ billion cfu's). (about $20.00 for 100 capsules.)
Hope things are going well so far. Could I ask you when, why and through what type of doc you had those tests done. Was it on your own? Just curious, I don't remember you saying a doctor had order some tests for your son. So they will be recommending supps based on this testing?
Thanks,
Faith
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Hi petb,
Doctors usually say fever of 103 or higher is something to be concerned about. Fever is just the body's way of fighting off infection of some kinds and usually comes down on its own (starve a cold, FEED a fever). Personally, I probably wouldn't use motrin or such just because of the tics issue. I would just use cool washcloth and wait till end of day. Also one thing I read way back when is that calories bring fever down, so having something high in calories like ice cream is good, although we probably wouldn't want to give a hot fudge sundae!
Also, I did want to ask you-- (and others)...
When you give supplements, did you give your child things you believe he needs from your own research, or is it under recommendations of the doctor or naturo or your NMT therapist? I mean, do you just give things at your own discretion or only from the doctor treating him? I ask because, we are currently seeing a naturopath since January and she seems to do things in steps. I want to give more vits, but right now he is on minerals (to make sure he has enough and is not depleted while we do chelation of metals, which we are just starting with a product called Metal-Free. It is a gentle, natural detoxifier. (if anyone has any experience with this product, please let me know). He also gets a probiotic and extra magnesium (which I added on my own, but she said it was okay). She also wanted fish oil and a b complex (the one I previously mentioned that is similar to that cataprex g), but I stopped the fish oil cause I imagined more ticcing. He also does methylb12 shots/folinic acid. I feel like I want to try other things that others are using, i.e. L-carnitine, 5htp, and maybe inositol (which she is recommending, but wants to wait on that right now.). I suppose I should just stay on the path, but was curious what others do and how you figured out what your child needs and what helps.
Just a side note to all--so far we havn't made any appts. with the school yet--the teacher is going to let me know when we can sit down together. This week is the terranove testing for second graders, so its a big week for the kids and teachers. Oh how I am praying he is able to keep his squeaks to a minimum during this quiet time. The teacher did say, "the kids seem to be used to him, they don't seem to notice". He's such a "silly-billy" that it just seems part of his personality. So this week, I will try to put some things together (along with my head) and be ready to go in there and KICK #@% !!
Thanks
Faith
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Hello Loren,
Just wanted to join in and say welcome too. I don't know that I can be of any particular help right now, but do of course know what you are going through right now. You seem to be off to a good start in that you are seeking answers and support. I have a feeling things will get better after you get a handle on things.
Oh, I am not one to talk, I'm somewhat confused these days as well. Perhaps you've read some of my posts, my son just turned 8 and has been having some tics for a couple of years. We dealt with that head shake a few months ago, and if it gives you any hope, he did stop that now. I'm not for sure, but it was a few days after we eliminated food ingredients which he tested highly sensitive to on Igg type blood testing.
I must ask, (and I do that alot around here!), how did you get so far in your progress regarding doctors visits and finding info (even this site) after only seeing these tics a few days prior? I can see how your devestation matches many of ours (I and other members here), but in spite of your shock you seemed to know exactly where to go and what to ask. I must say I am impressed--I spent months walking around like a zombie and hiding tears from my son before I could pull myself togeher enough to take action. Am I understanding correctly, you say all of a sudden he got severe tics in one day, you never suspected anything before? Some of the questions the others asked are good, re any recent vaccinations, illnesses, or anything different happening? I always like to get a good picture of what's going on with each case, since it gives clues to all of us, I mean observations, comparisons and similarities really help us all to help each other.
I must say I hear alot of "sudden, acute onset", but I really don't feel that fits my son--mine is kind of like yours, Cheri, little things from 3-5 years old and then more obvious last two years. Although it has not been constantly bad, some time frames are pretty good, meaning as long as it is not so obvious to others, I am in a good way.
Please keep us posted....
Faith
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hi all,
You are all right, I do need to have more confidence and be able to assert my position. Its just that I feel like the cart is before the horse. Like I am doing what I'm doing, but its not fully out there on what I'm doing it for. As I said, we've not gotten a "formal" diagnosis, but I know what I'm dealing with. And my feeling is that somebody telling me what it is is not going to change exactly what is the situation. It is what it is. I feel like the teacher wants there to be a definitive thing to call it so she can deal with it. She is being very polite about it, but I feel like she's not hearing me when try to explain that yes, he seems to have a tic disorder and this is how we are dealing with it. Can they force me to obtain a medical evaluation or psychological evaluation? I mean for their purposes?
Carolyn, you asked it my son needs extra help in school. Well, the thing with him is (and I don't know if this is tied in to the tics meaning it is characteristic of TS) his work habits as they relate to time management are ... well, I don't even know what word to use. The complaints I get about him is that he never finishes any classwork in a timely fashion. Or anything, for that manner. It is the same at home. Its like he thinks there are 48 hrs. in a day. He must be shuffled along with everything. The funny thing is that he is not behind in any academic aspect. He reads on level, writes beautifully, understands the math, spells, displays artistic ability, etc. When she discussed this aspect with me earlier in the year at parent-teacher conference, she didn't know what to make of him. In spite of his lollygagging, his academics were not in question. Doesn't need extra help in any subject except HURRYING UP. Always the last to finish, even eating lunch. He is not slow moving, he doesn't stay focused on what he's doing. Always stopping to chat or pay attention to someone else's work, or what they are doing, or giggle if someone else is clowning. He stalls and procrastinates, but smiles happily as he's doing it. I always say "he's there for the party". He seems to be perfectly capable, but just doesn't apply himself. Immaturity? (did I mention he is an only child?).
So you can see why the teach is probably frustrated with all this--maybe she is using the tics as an excuse to see what's what. I too, think she should have told me she wanted the school psychologist to sit in before she did it. I don't know what the outcome of that was (I think it was an informal thing), she did mention "He seems to be able to control it at times, because of course, he didn't do it while she was in the room".
And yes, Kim, I hear what you are saying re the lesson on the child with TS -- my child doesn't even know there is such a thing. He doesn't even know the word "tics". We don't say that. He knows he does the stuff, but have never given it a name. HE needs to be filled in and educated on himself before the other kids do. I think that is why I'm so sketchy on this. If he wasn't making these noises, I'm sure the teacher wouldn't make an issue of a few facial twitches. When I was there for his birthday snack, he was like any other kid, no one would have been the wiser. When I asked how he was doing that day, she claimed he was blinking alot earlier. How could that be? I either see him doing it or not. You mean he just does it alot when he's with her? Yes, I know he has a vocal. And yes, he does blink or twitch his eyes, but that one has slowly gotten better and I only notice it once in a while. Lately that one is not frequent at all. So what is she talking about? I asked if he does it when she's like repremanding him (it not usually for any mischief, just to basically hustle) and she did say yes. I bet she's making him nervous. He always says she's mean. Honestly, I don't blame her, I know she has to get the lesson done, but maybe she does try to push him and he gets anxious. Who knows, maybe a meeting will let me explain my position and how I feel we should handle it all. I CAN do that, right? I think I'm just scared they're gonna tell ME what THEY want done. And I'll just cry in the corner.
We had a bunch of boys here today for a special "playtime" -- sort of an informal old fashioned home birthday party. So much fun. He loves his friends, his heart is so open to other kids. I just don't ever want this to be a detriment to him.
Faith
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Thanks tons for taking the time to give that info. I have to go through it all. This is difficult, because we don't really have a formal diagnosis from a neurologist (or pediatrition) although we did see one last year. Medication was not suggested for his level of tics at that time. And since then I have been exploring this natural approach. I guess I'm afraid the school is going to frown upon this. I want them to understand that this is a viable approach, yet does take some time. I did explain this to the teacher in writing about a month ago using some suggestions from other members on this board.
I think the teacher may be looking for a way to deal with my son and his issues--I'm not sure if it's the noises or his work habits that are her main concern. When I went in to bring the cupcakes and sing happy birthday, I was there for 20 minutes, and he was great. I didn't see anything, just a little eye twitch or two while we were singing cause he was standing up and I guess he felt a little nervous being center of attention. The kids were so cute, all excitedly gathering around him for a photo.
Thanks again, I'll keep you all posted on what is next.
Faith
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Thank you so much for sharing this info. It is still all a little confusing. I am currently on the road of taking away foods not tolerated per the Igg type test. I feel he has done better re the head bobbing, but the vocal remains. I saw that foot bath advertised at my naturo's office so I know she does that, however she has given us a product called Metal-Free which is supposed to detox in a slower, gentler manner. We just started this a few days ago. We spray it under his tongue and he holds it for a few minutes. It contains some of the natural detoxers such as chlorella, etc. And it is somewhat expensive for a small spray bottle, over 150$. Do you really feel this path you are taking has had a positive effect in terms of improvement. Do you mean most of his ticcing is under control since you did this desensitizing? Please forgive me for asking same questions more than once, but I am feeling quite depressed at the moment. -- C.P., in spite of my downer, you made me laugh about the yummy bone analogy!
I probably will want to know more. Right now my head can't think straight. I'm going to be opening another thread, because the day has come that I have dreaded -- the teacher called me yesterday to tell me she had the school psychologist sit in and observe my son during class. His work habits are very poor, so she gets pretty frustrated with him. I have brought his issue on the tics up with her several months ago, so she knows I am on top of this. However, she seems to want to push the envelope to "figure out wha'ts going on with him so we can help him". I am going in today to bring in cupcakes for his birthday (organic cake mix, of course!). I feel so down and frightened. I know I am about to have a formal meeting about this (she feels his noises are pretty bad), and I honestly don't know what I'm going to say. I am good at writing, but not so good at talking, I get tongue-tied and start rambling. I want to keep my head on straight. So I will have to ask how others have dealt with the school system on this. I will elaborate more on a separate thread.
thanks,
Faith
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Petb,
Was that webkins you say? My son has 4 of them! He carries them everywhere and they are in bed with him every night. Please tell me what you meant about the neck tic being caused by it. What was it about the webkinz that caused that.
Please stay with me on this a bit. I am wondering how long your son had symptoms before he was diagnosed TS. You mentioned his vocal was disturbing in school--how did you handle that re the teacher, etc. I am trying so hard to ignore it, but heaven help me, this squeaky sound is very annoying to listen to when he is doing it alot. Are your son's symptoms milder now (aside from the lip licking) since you have started supplementing.
Your integrative doctor sounds interesting. Is it a naturopathic doctor? Ours gave us a product called Bio-3B-G, which sounds similar to the one you speak of. Have you found that beneficial? I was beginning to question his reaction to it, not hyper, just imagining tic increase, but not sure. This doc is not in NY by any chance?
Thanks for your help.
Faith
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petb,
May I ask you a bit more about your son's history of symptoms? You say carnitine helped with the vocal he had? Could you tell me how long he had that and when you started that supplement and anything else that you have done, since my son is dealing with that type of tic right now, a squeak noise. I am afraid to haphazardly try an amino acid without direction from our naturo, but I want to ask about that. I am always afraid some supplement will cause some other domino type effect.
Thanks
Faith
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Hi C.P.
What was the clue or test result that made her suspect he was fighting an infection? How does one tell that?
Is this from a chem panel blood test? And what does it mean "something happened during the last set of shots" -- what shots are you referring to? Also, what type of doc did these tests--regular pediatrition?
Don't panic, us Dr. Mom's will figure this one out!
P.S. I've been thinking about your son and wondering if he is doing okay off the resp. Did he ever have any side effects from it?
Faith
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Does anyone know if there has also been a rise of tic disorders and diagnosis of ADHD since the use of those vaccines. Maybe we've discussed this before, but just curious. Also, I am not entirely sure if the mercury has been taken out of these and since what year, but I do know they also have a five in one vaccine that has been offered to some of my friends. Again, I wonder if they think it is safer now because they say they took out the mercury?
Faith
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Giselle,
I am familiar with some of your past posts. But I don't know for sure, did you ever have any testing or treatment for metals? Is that one of your son's issues? When you say he is ticcing alot now, is it one tic alot, or different ones at same time?
thanks
Faith
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My son has never showed typical symptoms of allergies either. I wish I could see direct improvement but all I have is a neutralization nasal spray. I have to admit, I've been lax on getting it renewed, however, when he was using it (two sprays every day) I didn't exactly see an obvious decrease in the tics he was having at that time. Does anyone know how long one has to be on something like that to make a difference? Or should it be immediate relief?
Maybe all this talk of allergies is a sign pointing me to get the nasal spray again. I'll let you know if it helps.
Thanks
Faith
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I think I am having the same frustrations as you. When you say tics wax and wane, do you mean the one particular tic, or different ones at different times?
And by the way, thanks a heap for the tip on the yeast free sourdough bread--I found it at Trader Joe's yesterday, and my son liked it with butter. It's the first slice type of bread I have found, so that was a jackpot for me!
Chemar,
that is interesting--when you say tics are less severe, do you mean less noticeable to others and less urgency? We are in New York, and so far I've found November to now is when he tics. Last summer was very mild. Does anyone know what allergens prevail most that time of year? The one we are dealing with mostly now is the vocal, like a squeak/gasp. I just keep experimenting with different food groups to see if there is any impact.
Thanks
Faith
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When you all refer to allergies that your kids have, do you mean they have the regular more obvious allergies, such as sinus and nasal/sneezing type allergies? Or have they just been tested even and you found them to test positive to some things environmentally? I mean, if they didn't have tics, would you have had the testing done, and is that why they have some treatments, i.e. zyrtec, etc.?
I don't really know how to connect this, for my son never showed any symptoms of allergies, but I went ahead and had the testing, and he came up moderate to dustmite, cat and mold. We have been using a nasal spray which contains a dilution of the allergens. Is that what desentization drops are?
Thanks
Faith
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Hi Lenny,
Could you elaborate more on the b-complex that you used and then switched to. If anyone recalls, I have been wondering myself about my son's reaction to b vits and have been experimenting. My current suspicion is that he seems(?) to tic more while on something in b complex--niacin or folic acid? So I'm cutting it out for now. Could you tell me more about what's in your b-complex and the one you switched to? So you think he had minimal tics when you switched back to the old one? Please let me know your experience. It would be interesting to know other experiences with B's.
thanks
Faith
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Hi Patty,
I was struggling on what to say to you, but I think Chemar did it perfectly. If he is doing so much better and he is happy and doing well in school, well then you are doing something right.
Your last messages gave me some good advice that I have tried to follow, and I will tell you I am doing much better now. We all are. I am following the naturo's recs and also doing my own observing, but am really trying not to fret so much. I don't look at him with that frightened, critical eye anymore. His head shake is gone now, he does twitch his eyes and I still hear little squeaks and huhs, but as long as it is not so obviously apparant to others, I'm grateful. Like you say some days are better than others. Let's face it, I think we are all just fearful of the future, the unknown. If you start looking around, you'll see every family has something they are struggling with. We will get through it. What I really want is everyone (the public at large) to be like "he has tics, you have tics, tics exist, etc., oh? so what?."
I think you were referrring to continuing with the chiro/cranio? If you see he is much better than when you started, then I say keep it up. If you are feeling it is up and down and not too sure if it is actually helping directly, maybe you could take a couple weeks "rest" and see what happens. Or maybe you could go once a month. Are you moving forward with anything else? We were doing some chiro too, and had the same type of thing--I wasn't seeing any clear improvement, some weeks good, and one exacerbation after a treatment. So we decided (on her recommendation) to go a few weeks without it and see how he does, and my feeling is that he is doing pretty well sometimes, so am not sure if chiro is really needed on a regualar basis for him. I am also doing a few things with the naturo, so I'm gonna stick to that regimen right now. Its slow and steady. His head shake subsided when we took out the yeast/corn, and we weren't doing the chiro at that time. Of course, it could have been a cooincidence, but for now I'm sticking with it.
I know you are probably feeling better already--and as I was stating to the naturo--it is hard keeping up with the diet restrictions, shopping, cooking, etc. but it gets easier because you get used to it and it starts to become second nature.
Just remember where your strength is coming from...............................faith.
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Carolyn,
I don't really know what a compounding pharmacy is--I just get the methylb from the docs office. Is that what this person is referring to? If it'll help the cause, I'll certainly help if I can, but if you could find more info on what to do, that would be good.
Faith
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Sounds acceptable to me, Patty. Does it say "yeast free" on the front label? We, too, are avoiding yeast. All I could find was some frozen bagels.
Is that a frozen bread or right off the shelf? I would like to try it.
Faith
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Spartan,
Since you said that you seem to tic more at night in bed, I just wanted to say that I, too, get a little twitchy (don't have TS, but I do get the restless leg syndrome) --and it is also when I am getting settled in bed at night. I move around on the pillow for a couple of minutes when I'm leaning back watching tv until I can get comfortable enough to relax. For you, it's probably more just getting it all out before you settle down, rather than anything in the room. But, cleaning and using a purifier is definitely a good thing to do too!
Faith
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Ha! That was my attempt at dry humor. Guess my delivery was off!
I meant that I already was cutting out corn and yeast, and if I'm gonna try no-dairy too, oh boy, what are cookies and breads gonna taste like?! So....cardboard....draw chocolate chips.....
But, thanks, it didn't dawn on me that chocolate could contain dairy too. I got these chocolate chip cookies (Pamela's brand) that he seems to really like--the box says wheat-free,gluten-free, non-dairy, and they were a nice texture, not rock hard like the Newman's Own dairy-free cookies (my son cried when I gave him those!).
And I know about expensive--there was a time I wouldn't buy celery if it wasn't on sale!
Faith
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Hi John,
When you say the test for strep came back positive, do you mean the throat culture or the blood test for the strep titres? Why did the doctor agree to that test--was your son sick at time of the visit? And he prescribed antibiotics for what--the strep throat? or the high strep titres? I just wonder because if it is not going to be a longterm antibiotic treatment, things could go awry again when antibiotics are done.
Also, previous to this, had any of the supplements you were giving seem to bring about any improvement up till now?
Thanking you for your reply and update
Faith
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Thanks hon, I'm going to look for that too. Even though my son was okay with casein on the food sensitivity test, I'm still wondering if that was accurate, since I have been giving some cheeses and feeling like his vocal was a little more. So, I'm always experimenting. I think I'm gonna do a no dairy trial again. Maybe I should start cutting out pieces of cardboard in the shape of circles and just draw chocolate chips on them!
Faith
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rcwang,
when you say your daughter had something with milk in it, what was it? Are you saying that she hasn't had any dairy in a long time, even hidden dairy in breads and cookies? And she hasn't had that verbal tic until that slip up? ... Same for you Carolyn-- do you see it come and go with direct correlation to the offender. Do you mean you don't sniff if you don't have milk? (I can see where milk/dairy would be related to the vocal/sinus area because of the mucous and swelling in that area in relation to allergy, if that's what it is.).......
We did do the elimination diet first, under direction of the DAN doctor. Yes, very hard, but we stuck to it 99.9%. He was doing a little throaty sound and blinking a little. But nothing was totally gone after a month on that diet. So then I went ahead with the test (which was the Alcat, you could search that)
and found he was strongly reactive to yeast, corn and flax, pork and sweet potato--he was still getting flax oil, sweet potato and baloney on the elim., so maybe that's why we still had problems. He had also started a head nodding in between, so when I took away those foods, the head nod has stopped. But the blinking and throat sound is still lingering. So that's why I'm asking about specific culprits for specific symptoms. I have long suspected milk/dairy to be the culprit for his vocal, as it did clear up when he had it last year, but I can't seem to chase it this time. He didn't show any reaction to casein on the test. He drinks no cow's milk, only rice milk. Lately he does have a little cheese and some baked goods that do have dairy (but no yeast or corn). Yikes, if I read labels to remove the hidden diary too, what's left to eat? I don't know how to handle this. I think I have to try the no dairy again, but we did that on the elimination and the vocal was still around. So,
Also, I'm a little upset, for I'm hearing him add a little "squeak" sound now. It's not so big a deal to me, but you know, in school during quiet lesson, the teacher may think he's being naughty. She does know his issues, but still...
thanks guys, for the input, any other suggestions are appreciated.
Faith
Plants
in Tourette Syndrome and Tics
Posted
Ha!
Well, my bamboo type plant is in a pot with some kind of pebbles, no dirt. You just water it the same. You know those type of lucky bamboo plants you see in supermarket floral/plant section?
Faith