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faith

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Posts posted by faith

  1. Hi Tatoomom,

    Could I ask what you decided to do concerning the peptizyde and the adrecor product as you said you were wondering if That was making your sons blink worse? Did you stop those? BTW the Gaba Calm seemed to contain tyrosine too just to let you know. Or are you thinking fishoil not to good?

     

    Also, on one of your replies, you say you eliminated gluten per an older Igg testing, and you felt the tic/blinking was much better? Was this AFTER the worsening you mentioned re the above products? I mean have things gotten better since that post and was it due to elimination of offending foods?

     

    Forgive me, I really like to pay attention to what helps each of us -- for all we talk about here, its easy to get a little muddled --

     

    Thanks

    Faith

  2. Lenny,

    What kind of allergy medicine? Why do you give that and what is he allergic to? Have you done any tests with the naturo yet? what were her/his recommendations? Will they do any allergy/food sensitivity testing?

    Did you start giving the taurine yet? sorry so many questions, I just like to know specifics. Hope things settle soon.

     

    Faith

  3. Okay, so Skyler, Caryn, and C.P.,

    you are all saying that your child had a vaccine and then you noticed tics? Or just tics got worse?

     

    Skyler,

    why did your child have a chicken pox booster? is that something all kids get at this age?

    Did the tics start to wane as you mentioned AFTER you started implementing dietary restrictions and supplement? or before? How is everything going now?

     

    Can someone tell me when the next vaccine that is required will be and for what? 10 years old.? How can I prepare beforehand to "opt out". Kim, have you gotten to that point yet? What have/will you do?

     

    Thanks

    Faith

  4. Caryn,

    Thanks for those suggestions. He doesn't have to be off dairy per the test, but I just don't give him whole milk or hardly any ice-cream (just from my own phobias), just rice milk. But we have to watch yeast too, so that's a double whammy when it comes to carbs. My son is 8 and 42 lbs., so I need to get all I can into him!

     

    Lunch on the go is hard, I usually give him fruit and dry cereal in a plastic bag! There's other things I could give, I guess, but he's a real pain, cause he claims he doesn't like the way things smell in his lunch box, so he'll just throw it away. So I give good breakfast, and feed him as soon as he comes from school.

    I use these chicken or tky hotdogs (Empire Brand (kosher)), so it seems there's no corn syrup or pork in that. (you could bring that to someones house and microwave). I make french fries at home in canola oil. And use organic ketchup (no corn syrup). Alot of pastas, with sauce I just make from fresh tomatoes, garlic,oil,salt. You can make chicken nuggets with Orgran all-purpose crumbs from health store, they are gluten free. The cereal I use is Wild Oats organic oat rings (like cheerios) and Health Valley organic "square-ems". Oh, and that quinoa, you could serve it with sauce sprinkled with cheese, like a pastina, he might like it that way. Also Pam's cookies that I use are dairy/gluten free and he seems to really like them.

     

    Now I THINK all these are corn free, but with all the "hidden" names for them, you never know, but I'm pretty sure these are all okay.

     

    We don't use the Bontech vits. But for anyone searching for vits to try, its good to use that as a model to know what things seem to be beneficial for TS.

     

    Faith

  5. Hi girls,

    Corn -- how I am beginning to hate that word....

    I'm not sure what you mean by allergy -- my son just had high intolerance to corn (let's call this delayed sensitivity, I think that's what it indicates, not an immediate allergic reaction.) Now, I'm assuming that's just with ingestible corn and products, not sure about environmentally. There didn't seem to be a reaction to pollen on the invironmental allergy test but not sure if that was one of them, for pollen comes from different sources? eeeey, I don't know. Why?, is corn and pollen have something to do with each other?

    I never thought of that, again, I think its just for corn that's eaten. Ha! and no, C.P. we don't have much farms here (but we are about an hour outside of NYC in the suburbs), but there are some about an hour east of us. Why, do you think just having corn around could be a problem for your son? I'm still working on the ragweed dilemna!

     

    As far as rotating the corn and whatever, I don't follow that strictly, for I feel there's so much corn in different things, that I'm sure we slip up here and there, so if I just watch it, then the once in a while that he gets it by accident or if he's begging me for some sweet that i know its in there, then that's how I space it out. I think you just have to make sure there's some time in between (like four-five days) so it doesn't build up? And BTW, I think he'd still wet if I didn't night lift him, cause he did the other night. BUT, I can't blame him entirely because I try to get a litre of water in him each day, because he is supposed to drink this alkaline water that our naturopath recommended for him due to his blood test showed he is a little too acidic. So this is supposed to help to balance that back.

     

    While on the subject, if you have any suggestions for treats or breakfast products that don't have any corn derivatives, please feel free to share! I'm starting to get nuts.

     

    Faith

  6. Hi mr. itsme ;)

     

    If you feel he's doing pretty well right now, you could just hold off for a while. (or try it and monitor closely) I know what you mean about following doctors orders, but I think we all have to use our own intuition and common sense. Like, our naturo gave us the fish oil, and after giving it a couple weeks, I was feeling or imagining that he was ticcing more, so I stopped it. When I told the doctor my feeling next visit, she felt we should keep on since that was supposed to be good for him, but I just said okay, and went home and still did not give it. I felt things were going okay and wasn't going to take chances. And I did the same when I was feeling suspicious of the b vits she gave us. I wound up stopping a week or so and then gave 1/2 the amount she said to give. Things were much better so I stayed with that. I mentioned if it was okay and she was fine with that, as long as he was getting some.

     

    how is all going so far?

     

    Faith

  7. Tricia,

    Okay, the only thing that I see that might be a problem is the AdreCor product--it seems it contains tyrosine. I don't know for sure, but it seems tyrosine is not good for people with tics, since I think it raises dopamine levels, which is not good for tics. Maybe someone else here could comment? Maybe you could ask the doctor about that? But that is good, you see, you were a good detective-if you noticed an adverse effect, maybe thats the culprit. What is Gaba calm? Did doctor tell you about that or you learned on own?

     

    Faith

  8. I want to thank everyone for their replies and input. It is good to hear from others who are going/have gone through similar situations.

     

    Faith, and anyone else who can help... about the magnesium... would you suggest just trying that (the kids calm) or to try the Bontech pills that have more in them. I don't know where to start with vitamins etc. Just a reminder, my daughter is 4 with eye blinking, shoulder shrugging and lip puckering. I think a vocal now too - is at end of cold with a cough but the cough is staying. I don't think the kids calm has calcium but she does drink milk. The Bontech stuff sounds interesting but the site is a bit dated it seems.

     

    where should I start with vitamins etc.?

    thanks

     

    Lisa

     

    Lisa,

    I don't know from experience about Bontech, but we do use the magnesium (a product similar to kids calm called Super Mag) Personally, I would do the kids or natural calm first, for I've read some here that tried them noticed an aggravation of tics. It has many different vits together, which may not be good for some. Those vits require child to swallow alot of pills, can your daughter swallow pills yet? If you want to try other supplements, look at the thread by Chemar that describes what supplements have helped her child. She modeled it after what was in the Bontech vits, but likes to give all the supplements separately, which is a good idea. But some are using it, maybe they will check in and comment. Also, if you want to give calcium too, there is a Natural Calm "plus calcium" too.

     

    Faith

  9. Hello Tricia

    welcome to you and I'm glad you were able to take so many suggestions and guidance from others on this site. It is good that you have a good start with some tests. (do you live in a big city?)

     

    Some questions for you. You don't mention you son's age? Is it 6? Did you always have a holistic pediatrician? (I should change my name to curious george!) May I ask why, since that seems to be uncommon. Also, what was in the amino acid blend (what amino acids?) Did he take that at same time as the fish oil? If you read here, some believe fish oil to aggravate tics. As far as the peptizide, I don't think one dose is enough to gauge, maybe you could try a lower amount and see. I'd give at least a week. And try not to do too many supplements at same time, then you may not know what is good or bad.

     

    I totally agree about keeping him off the screens for a while, you have to see what's what. Maybe tell him the doctor said that may be why his eyes are irritated. I didn't see you use any magnesium yet? If you do, please let us know if it seems to have any beneficial effect on the eyes -- don't know, but sometimes I have a hunch that helps for that particular tic. Totally my own feeling, and would like to see if others are seeing that too.

     

    (Lenny--did you notice your son's blinking seem to get better AFTER giving the magnesium/natural calm?)

     

    thanks for sharing your story and strategies.

     

    Faith

  10. Lukesmom,

    I really don't believe any mainstream doctor will order these tests. In fact, they probably don't believe in them (may not even know what it is). You will either have to go straight to the source, or find an alernative doctor, such as a naturopath or osteopathic doctor to guide you. But insurance will probably not cover this. So weigh the pros and cons and see if this is for you. Personally, I felt it could shed some light on what might be bothering my son and although I cannot be 100% sure, I do feel that eliminating those foods has helped,(along with supplementation. I was willing to try anything within reason. You will decide what makes sense for your child.

     

    You should read up on what this type of testing is and how it is done and you will decide what makes sens for your child. You could do a search on IGg antibodies if you want to understand it better. Also, just for the record, our DAN doctor told us he felt the tests were a lot of "bunk" (his words). I just wanted to do it so I sought out a naturopath who would order it. There are other tests, I think one is called Elisa Act. Here's some stuff to read:

     

    http://www.pittsburghalternativehealth.com...nsitivities.htm

     

    http://www.alcat.com/

     

     

    Faith

  11. Hello Lukesmom and welcome to you.

    You seem to be on the right track. If I had to start somewhere, I would start supplementation with the magnesium product Kid's Calm that many here seem to like. Please see my post below to Lisa M. for some of my suggestions. Read as much as you can from the book, and look further into the things you are interested in. Does your son have obvious allergies? If not, I would try the dietary and supplementation first. If you could afford a naturopathic doctor (most costs, if not all, will be out of pocket) I would call around to see if anyone has experience with that, but if you live in a small town, I don't know if you'll have many options with that. Again, you'll have to read read read and educate yourself. Please don't give up, you will get as much guidance as you need here.

     

    May I ask how your son is doing with his symptoms since weaning off meds? Any improvement in any other area, mood, behavior? If you feel certain foods like pizza and cereal set him off, maybe going off wheat/gluten first, then try dairy. There is an elimination diet that you could research and try out. Just takes some time. These are all just suggestions to point you in right direction. Pleasle remember, there is alot of trial and error--everyone's situation is not exactly same.

     

    Good Luck

    Faith

  12. Hello Lisa M and welcome.

    I believe you already had the testing for the PANDAS. You mentioned you had blood tests done for ASO titer. That is it. If you say it was below 200, then that is considered normal, I believe. We had that doen for my son too, just to rule out. If you already had that done, I wouldn't get too stuck on that aspect, although just watch for any exacerbations when she is ill, especially with sore throat.

     

    As far as vitamins and supplements, you will have to read alot. I will tell you that the first supplements most try are the magnesium and many here like the Kid's Calm. I would slowly introduce any others, like B vits, which are good for nerve health, and fish oil (or flax oil) which is supposed to help with inflamation. Those are the ones that naturo's will give first, although supplementation is usually tailored to an individual's unique case.

     

    With dietary restrictions, the obvious is to cut out as much as you can artificial foods. Forget the processed foods for now and stick to whole foods. Try to cut out one group every week or two to see if it has any beneficial effect. Use your intuition for this. You think milk is a problem? Then cut out dairy for a while. I'd start with that. And then all obvious fake sugars, like aspartame, and especially high fructos corn syrup. This requires alot of reading of labels. It may be expensive to buy from the health food store, but then you WON'T be buying the junk either, so there's some savings there.

     

    It will take a lot of reading, and alot of questions. Everyone here wants to help each other, so ask anything you like.

     

    Good Luck

    Faith

  13. Hi Pam,

    I'm so glad hear things are looking up. Could I just clarify for the record, did you mean your son's tics were hardly noticeable right now, and THEN he did better with mood/anger when eliminating milk,wheat,gluten? Or did you feel the elimination was what minimized the TICS within a few days? Forgive me, I don't recall right now, did your son ever have any kind of vocal tic, and if so, is that down?

     

    Thanks so much, I like to keep a running pole in my head (I should start writing this down) -it just helps to know what is working for others and gives me more confidence in what we are doing when I see similar results.

     

    Just curious, is the kindergarten he will be attending the same school as the pre-school or different? And is the new school/kindergarten teacher (you already know who he will get?) aware of the issue already?

     

    regards

    faith

  14. Hello bmom and welcome.

    My naturo indicated that Alcat tests for igg ( which are antibodies, I believe) but also a little more, so i think its a little better or more accurate?

    You could do a search and read on what it is. When you say allergies, do you mean environmental or foods? Igg testing is for foods, I believe. And intolerances are not necessarily allergies in the typical sense, but sensitivities to certain foods or ingredients.

     

    Faith

  15. Thanks for that info Caryn,

    Yes, corn and yeast was on the highly reactive list, flax was the very high one. Thanks for that corn allergy site, I had that on my favorites list, but forgot it was there. I was recently trying to figure out if these trader joe's crackers had corn it it. It didn't say so, but it had two ingredients I was trying to search out and sure enough they were on that list of hidden corn derivatives (invert syrup and malt extract) :angry: So he had alot of these crackers a few days ago, nothing drastic happened, but I feel when I looked closely, I was seeing a little head stuff poking through, very subtle. So out goes those crackers. Its my feeling that corn is our problem, although it hasn't helped with the vocal, as I said, that one still lingers. If you have found any good snack foods (cookies, crackers) that don't have any corn (and I gotta watch yeast too) feel free to share! I'm wondering now if I'm 100% corn free--I am very diligent, but I'm sure he's probably getting some hidden here and there, maybe I gotta tighten up. so far its been over three monts doing this. Like I said, I would not reintroduce for good, too scared, only once in a while when can't be helped.

     

    Also, yes, my son started a bedwetting last summer--now I don't know if this has helped, because I night lift him and bring to bathroom at least once a night. I should try and see what happens. But I think he will, sometimes I catch him just in time when he's just damp. But if the tics are under control, he can piss all he wants!! :P

     

    Faith

  16. Caryn,

    Wow. Again, I'm really happy to see that someone else feels a direct correlation to the elimination of an offending food and a reduction of tics. Are you saying that your son had multiple tics and then when you totally got to the point of elimination the corn and whateve else, he has completely stopped the tics? Did your son ever have a vocal? We are still dealing with that one, it doesn't seem to get better with the elim of corn/yeast, but the motor tics did.

     

    Also, could you clarify what you stated about kids reacting to seasonal outbreaks of tics, I didn't quite get what you meant. We also had the titer tests twice and both were negative too. I just notice that fall through winter seems to be the time we dealt with tics in the past so far, while others here notice an increase in spring allergy season.

     

    thanks

    Faith

     

    P.S. did you get my response to your message? I'm wondering now if it went through. I seem to be great at losing my posts lately.

  17. Hi kkver:

     

    How are things going for your child? There's a forum for ADD on this site, but I notice it doesn't get as much activity as here. I would just suggest looking into the premise of the Feingold Diet, even if they just loosely follow it. Its kind of along the same lines as what we are doing here on diet restrictions, just a little different. Maybe that site "Native Remedies" has some products used for ADD that they could try. Its all natural, I believe.

     

    Faith

  18. Imcgill,

    In your last couple of posts you indicated that he was doing pretty well--did the eye blink just start up again recently? Is it both or oney eye? Just curious. Did you feel the kids calm was having beneficial effect on that previously? Doing anything different recently? Sometimes when we see an improvement for a time, we tend to get a little sloppy :angry: without realizing it. Have you added anything that may not agree with him? I know its hard to pay so close attention, but ......

    we have dealt with that eye blinking and it does seem to wane after a few weeks. Maybe you could give a little extra magnesium during these times? Also, has he ever been to a pediatric opthomologist (to rule out)? I've tried over the counter drops just to see, but I can't really correlate any improvement due to that. I just tried it for the heck of it.

     

    Its good to compare notes with each other. Thanks

     

    Faith

  19. My son actually showed a very high (out of range) level of B12 and folate. This was just one thing the DAN doctor ordered on the blood chemistry workup. When they see this, they have a test which tests for reduced MTHFR (methylhydrofolate reductase) activity. It is apparently a gene mutation. It means that the methylation of the B12 in his body is impaired and the B12 just sits and doesn't convert to what its supposed to.

     

    I don't think just anyone does these tests. It seems to be something special by DAN doctors. Apparently on research they find that a good percentage of autistics have this particular problem with the MTHFR gene and so they get the methyl B12 that Carolyn is describing. Its a little complicated but you could read further on it. I'm not sure you need to worry on that aspect of it, I would just supplement the amount recommended and maybe use the oral or sublingual. B12 is a weird one, I believe folic acid should be taken with it since they seem to work together. That is what we do. (5 mg.) (Amount that high is prescription) I think I've seen a B12 vit that included folic acid and B6 with it. I think it was a Trader Joe's brand.

     

    If he's doing okay right now, I wouldn't rock that boat either. Did you look at that site I mentioned? Just click on the poster called "rose" on the neurotalk forum and she has a link to her B12 site. I would post the link, but I just tried to and lost my whole reply post and had to type it all over again, so I'm not taking that chance again!

     

    Faith

  20. Hi C.P.

    Just to clarify, my son takes B12 shots in the form of methylcobalamin, which I believe is a little different from regular B12 (cobalamin). He gets this because a certain test included in his blood workup by the DAN doctor showed he has an impaired ability to methylate (or convert) the B12 in his body. So by giving Methyl cobalamin, this is the next step in the process, so its like bypassing the problem so he may utilize the B12 properly. The vial says 25 mg. and get about three shots out of it, so I'm guessing the dose is 1mg. per shot? I could find out for sure, and let you know.

     

    But oral may be a different story. And I think that B12 is not totally absorbed so sublingual may be a better bet. I would search that a little and see what you come up with. On that site, neurotalk, there is a poster called "Rose" who seems to know alot about B12 and even has a website about it. Maybe you could poke around there.

     

    Could I ask what other supplements you have started since getting these test results, if any. How is your son doing? Still pretty good, I hope?

     

    Faith

  21. ad ccl,

    I'll jump in on that one. This is interesting to me and I think I can explain it, because, no -- my son does not do that, but.........I do. (or rather I did this as a child, I distinctly remember, and my childhood friend does too--it was quite funny to us). I would put my thumb up in front of me (like in a thumbs up fashion) and sort of line it up with some point of vision in the distance. It was like I wanted to cover the vision point with my thumb, or line it up with some vertical line, like say, a telephone pole, and move my thumb down straight without waivering it. Like I was tracing a visual line with my thumb. And it had to be straight, not waivering, or i had to do it all over. Now that, to me, was a compulsion. A compulsion is something one needs "to do". I didn't do it all day long, just once in a while when the thought struck me. I have mentioned that I sometimes have little twitchy feelings, but mine are mostly compulsions, like I also will put down my coffee cup and have to tap, tap, tap the cup lightly on the table until I'm satisfied, usually 3-4 times. If my husband is around, he'll go "baby, stop tapping". . . . . . . Oh heavens, I HAVE OCD! :)

     

    Stimming is like a repetitive thing like rocking back and forth or like autistic children might do some head banging against a wall. Stimming could also be like when someone sits with their legs crossed and shakes or swings the top leg repetitively, either up and down, or quickly at the ankle. I'm sure many of us do that without even realizing it.

     

    So, yes, I believe that to be a little compulsion, not a tic or stim. Believe me, its no big deal.

     

    Faith

    and tap tap tap my mouse as I click on "reply" :P

  22. Hi Patty,

    my first inclination was to say that if this is from a church that is not of your religion, then I wouldn't give it another thought. God will hear all our prayers and I don't think money is required.

     

    But I couldn't resist, and I found this.

     

    http://www.saintmatthewschurches.com/StMat...rRugLetter.aspx

     

    It's probably not exactly a scam, since it does say you don't HAVE to send money, but again, if you have to question it, then its not for you.

     

    Faith

  23. Kim,

    Thanks for that interesting info--I want to read up a little more to understand better, it takes me a little while to absorb :D

     

    Carolyn,

    Thanks for that reply, that does give me a lot more info than I had. That's an interesting site--is that connected to the Dr. Robbins that you see? It mentions something about a forthcoming book on the topic of TS and environment/allergy connection? -do you know of it? Also, what is the Capital Hill trip? Is that something you do for TS awareness? Very impressive. Hope you are feeling better -- maybe all the cherry blossoms in bloom?

     

    Charlie, (I mean C.P.) :P

    Oh yes, I often think, if we were all in the same room, what a cocktail party that would be! Thanks for the laugh...

     

    Faith

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