faith
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Hi C.P.
I just wanted to say how happy I am to hear that, about the improvement I mean. So is he down to just an occasional tic, or the vocal is very diminished?
I don't know much about the raw milk, but I wonder if that kind of mild has natural amino acids, like tryptophan? Maybe that has had some calming effect. Does he drink alot, or occasionally. Is he off other dairy? Why did you want to try the raw milk? Problems with dairy?
Regards
Faith
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Hello Spartan,
I would say you are definitely in the category of chronic tic since you say you've had the same tic for several years. Just curious, when you say you did not have any tics the years in between 6 & 9 was it?--Are you sure you didn't have any, or possibly just something here and there that was very minor or mild?
That was a good thought about the vaccines that Carolyn had. However, if metals are contributing to your tics, I do think you need to see a naturopath about that aspect for there is a certain way to handle that and a naturopath can guide you on that. My son, who is seven, had a urine test for metals done through a naturopath and he did show some lead and mercury. The process of removing them from the body is called chelation and there are many different ways to do this, however, I don't think its something you can do on your own. There are some natural chelators you could use, but still think you need some professional guidance on this.
I noticed some of your posts from past and you were looking into some supplements. Have you tried some of the things recommended? Would you mind letting us know what your diet mostly consists of?
I'm glad to hear your head nod is not noticed too much by others, it seems your tics have been pretty mild for the most part.
Faith
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I don't think I can give an entirely scientific answer, but it is believed that foods that cause sensitivity bring about a histamine release (not entirely like a true immediate allergy, but sort of a delayed, accumulative reaction) and what happens after that I'm not entirely sure, but do a search of Igg and lots of thing will come up to read and you can copy them and show it to your nuero.
We did the Alcat food sensitivity test (you can search that), and I believe it is supposed to be better than just Igg. When they send back the results, there is a total explanation and guide to how to read the results. They also give recommendations on what to avoid and how to rotate the foods back in.
Now, I suppose some don't believe this is beneficial, (my DAN doctor also said the same thing that you describe yours said, and so we just did an elimination diet without the test, but I did not seem to see any good results, so I went ahead and did the test anyway through a naturopath, who believes in it, and found some interesting things that my son was sensitive to and sort of provided clues as to why the elimination of foods was not enough. He was sensitive to things that I was still giving him on the elimination diet since they were allowed. So I am a believer in this as it did provide us with another direciton when we really needed it. We are not out of the woods yet, as my son has a few different tics, but I will tell you that about three days after eliminating the strong reactors that he had such as flax, yeast and corn, his head nod/shake diminished and is gone (praise the Lord). I also remember in the past he had a neck stretch tic that went away a few days after I eliminated high fructos corn syrup (mainly pancake syrup which he sucked up) only on a suspicion. So what I am saying is that personally, I feel its a worthwhile step, even though a little costly, (maybe that is why a mainstream doctor is hesitant to recommend it) and would definitely persue it. Just read as much as you can on line and maybe some books in the library will explain the premise better. I found a book called "Hidden Food Allergies" (finding the foods that cause you problems and removing them from your diet) by Stephen Astor, MD., that might explain it in simpler terms, although it is not about the Igg tests, just elimination diet.
May I ask how your child is doing as far as tics go? I got the impression from your past posts that you were managing them very well. How is she presently and please share what steps you feel has helped. I know that will help me and others who are reading.
thanks
Faith
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Hi all,
Oh my, is a tetanus shot something we will have to deal with in a few years? What is that for? If it definitely contains mercury, thats a no brainer for me. Is is required at a certain age?
Also, recently while at the naturopath's office, I overheard someone asking about the vaccine talked about for the girls to prevent cervical cancer, and the naturo told them, no, it wasn't a good idea and did NOT recommend it.
While on the subject, another thing I am curious about. Does anyone know, (any nurses out there?) if a TB test could cause any problems? I'm almost afraid to find out. When I was pregnant, I got a job in a hospital for a few months and they required a TB test (tuberculosis) in order for me to work there. My OB/Gyn said it was okay... (but what of that? he he).
Faith
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Hi Carolyn,
Just curious, have you gotten rid of much lead and mercury since beginning chelation? Has that been a slow process, and do you feel this has been a definite positive impact on reduction of tics.
Also, have you (or anyone else) heard of a product called Metal-Free? Its an oral spray that is supposed to chelate naturally and very slowly. This is what our naturo is recommending for us. She believes in slow and gentle for children. I've seen some other mention of this product from Spring, but don't know if she ever wound up using it.
P.S. , we also use the MB12 vials and I fill the syringe when its time for the shot. Pretty easy.
Thanks
faith
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Hi C.P.
I loved your post of yesterday, thanks for that. The image of family around the table happy and laughing....priceless! (Isn't that a commercial? he he.)
About the dentist, all I can say is to refuse the flouride treatment and if there are any cavities, make sure its not the silver kind. I think they use the white kind now, but don't really know what its made of. Maybe you should innocently ask over the phone what they are using and then do your own research before you get there. I say this because, when my son had his last visit, he had recently started blinking so I spur of the moment said I didn't want the flouride treatment because he has tics (since I had read some not so good things about flouride) and the dentist did try to assure me that there was no danger and that flouride was "just a mineral". It is easy to be persuaded by a professional, so just be on your guard. I just said, "I know, but I just want to hold off until I get this figured out." Also, I never like x-rays for anything but we do it yearly, so not really sure about that in regards to tics. Sometimes they just do a few pics if you don't want the full set of x-rays.
Good Luck
Faith
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Hello Spartan,
If you (or anyone else) are still looking for a good food sensitivity test, I don't know too much about the ones you mention, but we did the Alcat test. You can do a search on it. It was, I believe $450.00 and tested for 150 foods. It is through a blood test and they can send you the test and you can go to a lab for the blood draw or do it through a naturopath as we did. I think its worth doing the test with the most foods tested. The website gives all the information and directions.
I am glad we did it as I was guessing at so many things, and this provided us with a better direction. I don't know if it is 100% accurate, but I think about 80% they say, however, I think it shed some light because we had already done an elimination diet and did not really uncover any answers. My son showed strong sensitivity to corn and yeast and we have been avoiding these for about 4 weeks now.
The first two weeks I didn't see any vast improvement, but started to see some after the third week. I really think avoidance of these foods (and a few others) has helped. Just my opinion, but I think it is something worth exploring.
Faith
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Hello Deavyin,
Welcome to you and thank you for your honest post. I know you have given some of us something to think about. The part of your post that struck me was when you said you felt like you were being punished for your tics when your games were taken away (if that was the case).
However, I feel I must clarify and defend some of our intentions. When we, as the parents, discover something that may be contributing to our childs symptoms, we are for the most part trying to remedy the situation in the LEAST stressful way. Meaning we are all looking for suggestions and support so as NOT to make our children feel that they are being punished for their symptoms that they cannot control. I don't think anyone here is saying to their child "OH YEA?! You're blinking while doing video games, so here, give me that so I can throw it in the garbage!!" While it is painful enough just to think that an ordinary game meant to be fun, or a yummy cupcake with green icing could be a problem for some of our kids, I know that no one here WANTS to do anything to punish or upset their child. On the contrary, that is the very thing we are trying NOT to do, and when we discover things may not be good for them, we try in the most loving way to remove it without any undo stress. I don't know if you just read the most recent posts, or have been reading this forum for some time. If you have not yet, I would urge you to please go over as many of the past posts as you can and see how tactful and loving some of them have managed to remove offending items such as tv, computer and yes, video games from the kids, and have managed to actually find it brought the family closer by doing other things, such as spend time playing games together and communicating better and just finding other ways to have fun as a family. That cannot be a bad thing. Certainly, that is a much better stress reducer than any.
Please beleive me, I am not undermining your suggestions in any way, I know you are just trying to give an honest opinion from someone who has "been there". The other part of your post that struct me was when you said you have felt the pain and embarrassment and would like to do anything to alleviate that same pain. There--you said it--that is what we are trying to do. With knowledge and understanding, hopefully armed with a little more information than was had 10 or 20 years ago, we can head this off and alleviate some of the pain and embarrasment that this can cause. No one wants that for their child. I know that just yesterday, my son was getting upset when I said not to eat the birthday cake from a party we were ate, so I did compromise and let him have a few bites. He knows we are avoiding wheat and corn but I don't believe he knows it is because of the tics. He is seven and he believes it is because mom does not approve of artificial foods and his blood tests show a sensitivy to that type of food. I go to great pains to provide him with healthy alternatives, like baking my own muffins and bread, and shopping for delicious cookies at the healthfood store that do not have those ingredients. When I explain how improtant this all is for his overall health, it is no diffeerent from any parent limiting candy and junkfood and too much time in fron of the tv, and I believe he knows this is a good thing. Yes, sometimes he does get frustrated, and I will be working on this aspect because I do take something away from your post and will try to be more mindful of this.
Now I am not also trying to be condescending or ignorant, but I do think that the twenty first century, while bringing us lots of useful technology, also poses many threats to our and future generations. I for one, have no qualms about limiting anything that could pose a threat to my child's health. After all, I am the parent. He will, in time, understand.
Apparently you say you are an avid gamer-I am not in that position--my son does not even own any video games, not even a handheld one, he never took to it, so I am certainly not going to encourage it. I must say also to any mom's here that are fretting over their decisions to limit games, removing these types of things is not the end of the world and I believe will only be for the better, not worse. I know that we are all doing what we believe in our hearts is in the best interest of the child.
I could go on but I think I got the message across. Again, thank you for your input, and please continue to join in, you are very much welcomed. I just wanted you to see the other side of the coin too.
P.S. I am not sure how old you are--I am guessing mid twenties? Also, I am curious to know if you have ever tried any of the natural treatments that we talk about here.
Faith
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hello Mary and welcome,
If you decide to go to any doctors, what I would suggest is to speak to the doctor alone before he sees your son so he will not be aware of why he is there. That is what I usually do. I tell the doctor that I don't want him to hear what my fears are so as to not cause more stress for him.
Perhaps you could take him for his annual eye check-up, but would suggest a full opthomologist exam. That is what I did to make sure there was nothing wrong with eyesight or eye allergies. Just talk to the doc or assistant out of earshot of the child and he will just think its his regular routine visit. You can discuss your concerns with the doc privately.
My personal feeling is to just focus on what is going on right now and not be concerned with label, as that won't change anything. It may never manifest into that.
Good Luck
Faith
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Ortho,
we have been doing the methylb12/folinic acid for about three months now. The doc just said to give it together, (folinic is a pill). I don't think I noticed any extra hyper behavior or sleep problems. I just hope this regimen has some positive effect on the tics, i.e. perhaps getting the methylation working and thus the natural detoxification process. I think that could take some months, although not sure. (Carolyn?)
The manganese he just gets as part of the minerals he takes from the naturo, I guess that's preparing for possible chelation. I just give a few drops, don't know how many mg. it is, but probably minimal.
I havn't given any other vits for last three weeks, (stopped nu-thera) as naturo has him on this regimen right now. I do give probiotic too. Also, alkaline water, and supposed to be doing fish oil, but not giving right now just to see what's what with the B's.
Chemar,
interesting re the B vits--do you know for sure if your'e son is high or low histamine? If you do, I'd be interested to know if that rings true why he can't tolerate some b complex. Is the multi okay because it is minimal dose?
I'm having this feeling about it and am just going cut it out for a week and see. I never know what is enough time--I know its about four days to get something out of the system, but with vits, maybe longer is needed.
To all,
it does seem like this is all so complicated (and it is) but the longer you pay attention to all these things and start to become knowledgeable and familiar, it sort of becomes second nature. Like, I don't think I coud NOT pay attention to all these things if I tried---it becomes a way of life, and we become very serious about our research and begin to really find it all quite interesting, no? I've come to far to go back now.
Faith
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Thanks C.P.
It's good to see the similarities and commonalities. Who knows, maybe together we'll all discover the common denominator!
I think I remember the Dan doc (also an allergist/immunologist) mention something like "yea, he's allergic, he's got big tonsils" and he was having my son blow hard into some blowing tube. So it makes sense that maybe that is a sign of something irritating the immune system, as that is what allergy is, right?
Imcgill, I think Chemar meant yogurt and probiotics are sources of the same thing, which is friendly bacteria for the gut. So glad you are in a good phase.
Faith
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I For instance, my son gets B12 shots because he does not methylate properly. But on the blood test he showed HiGH B12 levels. If I just tried to figure this out on my own I would have thought he didn't need B12, but the case was just the opposite because high levels of B12 means that it is stuck and builds up, and is not converted, thus the need for methyl B to bypass this problem.
I should have my biochemistry degree in the mail shortly!!
Faith
You can try searching for the term methyl folate trap. This happens with a b-12 deficiency. I think this is what you are referring to. I know I have read that one nutrient gets trapped and may appear high in tests, but that is really an indication that the body is not converting that nutrient or not donating the methyl donor as it should be. It is a complex subject and even I get confused with some of this stuff sometimes.
But faulty methylation can be corrected with the right nutrients. Severe methylation problems would indicate either high or low histamine levels. There are only two possible groups of nutrients that are needed. Have you tried to test your childs histamine levels yourself with nicotinic acid. I can explain how to do this test if you are interested.
Orthomolecular,
I am not aware if he is low or high histamine. I am assuming high, does undermethylating go hand in hand with high or not necessarily? What you refer to above is correct, he does not methylate due to the MTHFR gene mutation. We are correcting with methyl B12 shots, and leucovorin, which is FOLINIC acid. I am still having a confusion as to what form is better for this methyl path--FOLINIC acid or FOLIC acid. DAN doctor says folinic and another doctor I consulted with on-line says it is the wrong form and folic acid should be used. I showed his reasoning to my natoropath who in turn consulted with someone and agreed folic acid is correct. I was all set to try it that way, and now I just read somewhere else that folinic acid is the way. (the reasoning is that folinic acid is the bioactive form) (but the folic acid advocate says its because folic acid is donated to two pathways, and cannot be done with folinic)
You seem to have much knowledge, do you know what should be used for this pathway.? In other words, we want to get him to methylate properly. I don't understand the contraversy. Any insight would be greatly appreciated.
Also, I would like to try that test with the niacin, but am afraid it would have an adverse effect on his tics. Could I try it on myself first? I remember a very long time ago, I did get that flush feeling and figured out it was the niacin, but have no idea how much I took.) I am wondering about his tolerance of B vits. Cooincidentally, after three weeks off all vits except some minerals, I felt he was starting to improve (tics slowing, getting milder). Then we added a low dose of a B complex (Bio-3B-G by Biotics Research--it contains 20 mg. of niacin and 400 mcg. of folic acid, but he takes 6 pills per day) and after a week of taking them, I see tics sneaking in again. Not totally sure if its the effects of the B's, but I watch like a hawk. So right now I am just suspicious. Will stop a week and see--is that enough time? Again, any insight is appreciated.
Thanks
Faith
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Just curious as to what type of allergies he was tested for (environmental?) and what type of test they used.
Also, just as a side, wanted to mention my child is also slight and light weight and although no pandas connection to date, allergist did mention he had big tonsils too. Just noting the similarities. Anyone else fit that profile?
Thanks
Faith
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Irena,
Yes, I was wondering too, why you are planning to give amino acids. I realize that you said earlier that Stas has tested low on many of the aminos, however, did the testing physician recommend what to take, or are you just figuring this out on your own? If you did the tests on your own, I suggest you take the results to some sort of doctor or naturopath to figure out what he should take and especially the amounts, for they should be in some sort of balance. I would not do this alone.
Did any of the docs believe that correcting these imbalances would have an impact on his tics? Or any other issues he may have?
Also, while we are on the subject,
C.P.
Does your son have iron deficiency anemia, or just low in iron? I thought iron was not a good thing to supplement for anyone, other than women in menstruating years who perhaps lose a lot of blood? Not sure on this, just think so. (also, how long on the iron supp before increase in tics?)
I guess what I'm thinking is that its very complicated to keep on top of every imbalance in the body, for I would think most would fluctuate at different times. And there could be more than meets the eye for why a deficiency or overabundance occurs, and so supplementing many not be the absolute fix. For instance, my son gets B12 shots because he does not methylate properly. But on the blood test he showed HiGH B12 levels. If I just tried to figure this out on my own I would have thought he didn't need B12, but the case was just the opposite because high levels of B12 means that it is stuck and builds up, and is not converted, thus the need for methyl B to bypass this problem.
I should have my biochemistry degree in the mail shortly!!
Faith
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Hi Carolyn,
Glad your rotationis going well. How long after eliminating offending foods did you start rotating the foods?
I don't think it should be a problem to have as many rice waffles as you want if you want them. Are you concerned you may become sensitive to rice? My son did an elimination diet before the Alcat test, and all he ate was rice products. Like rice cereal almost every day for breakfast, or pancakes from rice flour, rice syrup, rice milk etc., and he did not test sensitive to rice on the food sensitivity test. Even after the month was over, we still stuck with the cereal and rice milk.
Just curious, I get the impression you stay away from many foods--are you and have you always been very thin, even as a child? If you crave certain foods, sometimes its the body telling you what you need, like if someone craves milk or ice cream, the body is saying "give me calcium", or if you crave steak, the body wants protein. Just Dr. Mom talking--I probably read that somewhere! I would just go with it. If you are quite thin, that could be good thing. Where did you find rice waffles? Is it Van's brand? Do they contain yeast?
Regards
Faith
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Hi C.P.
I would think if the glue is dry and there's no smell coming from it, it should be okay as long as he doesn't put it right up to his nose. I sympathize, because I do the same thing here. If my husband sprays his cologne on, I get all nutsy and tell him to wash it off. Or if he lights a vanilla candle in the house, I freak. I've even taken to telling my son not to use his markers or dry erase markers in school. I don't know for sure if any of these things are a problem, I just don't want to take any chances. If he complains I say its because I love you and don't want any bad chemicals around you that could be harmful (I don't mention about the tics).
He'll probably just handle the models a few times and then put it up on the shelf.
(Noted yr reply about the strep B. So there's two of us who had that. I wonder, because it IS a bacteria, I think. In case my question got lost in the shuffle, anyone else out there positive for strep B while pregnant?)
Regards
Faith
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Sunshine,
Is there any possibility it could be the beginnings of exema? My son had a friend and his younger brother over today, and the brother had pink little spots around his face. I saw him scratching his head and cheeks. I mentioned it to the mother and she said he gets exema. This child was also very pale skinned and had pink shiners under his eyes. And when they were busy running around and playing hard the pink marks or blotches were more apparent and that's when I saw him scratch. Look up Healthy-Skin-Guide.com. (sorry I don't know how to copy links yet).
My son also scratched and said he felt itchy sometimes during the epsom baths, but it was no big deal. Maybe its just from all the hot soaking and the salts could make the skin a little dry?
Faith
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Sunshine,
Is there any possibility it could be the beginnings of exema? My son had a friend and his younger brother today, and the brother had pink little spots around his face. I saw him scratching his head and cheeks. I mentioned it the the mother and she said he gets exema. This child was also very pale skinned and had pink shiners under his eyes. And when they were busy running around and playing hard the pink marks or blotches were more apparent and that's when I saw him scratch. Look up Healthy-Skin-Guide.com. (sorry I don't know how to copy links yet).
My son also scratched and said he felt itchy sometimes during the epsom baths, but it was no big deal. Maybe its just from all the hot soaking and the salts could make the skin a little dry?
Faith
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I'm just gonna throw something wild out there. Just something I've always been curious about, and with all the talk of strep A.
Has any mom here tested for STREP B positive when they were pregnant? This is a common test done with a swab in vaginal area in last trimester. If you are positive for it, than you will be treated with antibiotics during labor to prevent being passed to the baby. Group B strep is common in the flora of the body and is not harmful, but apparantly can be to a newborn.
I know this is probably in left field and probably doesn't have anything to do with all this, but, hey, you never know! It's still strep, right? Maybe all the research leading to the PANDAS was concerning the Group A strep, and I'm wondering if this (the Group B strep) could be a factor in those who are not Group A strep positive (and high ASO titres). I wouldn't know where to begin on this one, but, I don't know, I know I had that (positive culture) when pregnant with my son, and just wonder...
If any of you remember, I'd just be curious to know.
Regards
Faith
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Could anyone plealse help me? I am at a loss on how to explain to my son's teacher the kind of testing and treatments we are doing in regards to his tics. It is obvious now to the teacher that he has a tic disorder (since our last visit to nuerologist, we havn't had an "official" diagnosis, but it's obvious that this is what we are dealing with -- and medication was not discussed as symptoms were not enough to warrant that route yet.) Since then, as most of you are aware, we are seeing a DAN doctor and have started a testing and treatment plan with a naturopath, so I am not up to trying medication yet, as we are still in the midst of this alternative route. Just when I think he may be doing better since modifying his diet per the food sensitivity testing, the teacher saw me this morning and asked how the testing went (she knows I am persuing this avenue, but I don't think she has a clue to what type of tests we are doing and the kinds of things implicated with this disorder), and she acted like she thought he was doing worse! She notices his noise (like a ahem!) and eye twitching. God, I'm dying here. I was unprepared of what to say to her, and just told her we found some vitamin deficiencies (B!2) and are addressing this with B12 shots. We kept getting interupted so I don't think she was really absorbing what I was saying and I was even tongue tied as to how to explain.
I guess what I'm asking is how I can explain why this alternative, naturopathic way can help. I understand it myself, but how do you put it into words that someone else can understand how these treatments, i.e. vitamins, etc. can have an aeffect on a nuerological symptom? What we know is all broken up in bits an pieces. I don't think I can ever put it all into words and will probably type out a letter to better summarize what we are doing. Or should I? I just want her to know that I am aware of what is going on with my son and amy trying to find the roots of his symptoms and address that. She knows we are using "integrative and alternative docs")
Does anyone have a simple (yet complicated!) explanation of what this type of testing and treatment can hope to accomplish? I am at a complete loss of how to explain it to anyone, even my mother. People will just think, what does that have to do with the neurological system?
If anyone has any suggestions or a few sentences I can use to explain to her that can help this all make sense, I would deeply appreciate it. My husband left for work this morning saying half jokingly "Happy Valentines Day", and all I could do was sit down and cry.
Faith
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You are so very right, Daniel. Like, I think I have some twitches and compulsions, and I can't ever remember being teased (except amongst friends joking around), it was never an issue. I don't even wonder if anyone notices. For myself, I don't care an ounce. We are frightened for our children, because we never know what is around the corner. Since I have seen my son have a few tics at the same time I was just thinking before how I could deal with a little blinking if the noise would just go away. I bet any of us would take that first small tic we first observed and leave it at that if it would never escalate into anything worse. I think its the fear more than anything else, not just that we want our children to be "perfect". Yes, no one is perfect, my sad feeling is just that our kids have to "wear these symptoms" for all to see. Its like there is no privacy in this disorder. That's the tough part. We all want to spare our children any harm or humiliation. I think every generation gets more and more in tune to the insensitivities of the world.... Now I am just rambling!
Well, thanks for that and my prayer is that we should be able to find help for our precious ones more readily without the fervor and desperation we are all feeling. Hope all is going well with your child.
Faith
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Sharon,
I would think that is a Good sign. I think the healing crisis doesn't have to be the first week, but just as the body starts to withdraw from offending foods and than starts to heal. I'd think the healing would take some energy away from the rest of the body as so can cause the symptoms of being really tired and well, miserable. I would keep going and you should start to feel better real soon as your body adjusts. And drinking lots of water shoud help to eliminate old toxins. Just my unscientific thoughts.
Why did you do the ALCAT test for food sensitivities? You don't mention if you have tics or tourettes. If so, have you seen or feel any improvement in that area? My son is about 9 days of eliminating offensive foods (which can be challenging because of trying to eliminate all corn derivatives and yeast, but I think we are managing) and I do see an improvement in his head shake and eye blink, but the vocal is still lingering. I think if we went through all the effort and expense, we should just keep trucking, for then we will never know if we gave up too soon. I've read lots of places that you may feel worse before better.
I'd like to know how long anyone else feels health improvements should take too.
good luck,
Faith
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Thanks Kim for all that. I'm loving all this info even tho I must admit the fancy scientific words get me a little confused when I've never heard of that word before. Like the TNF, I think there's something there and want to read more on it to put it all together. I'm just thinking off the top of my head here, so I might sound all over the place. But I keep going over the stuff, and trying to link it together with tics/ts. Do you ever notice tourettes or tic disorders are rarely mentioned in most of research--clearly all the stuff we know about inflamation, demyelination, allergies, etc. could certainly apply to tics and such-- but every other disease is mentioned, it's like its almost never acknowledged or something. Why is so little research done in relation to it?
And the part about the "pruning" in teen years (see above post for anyone interested) is interesting. I'm thinking that could happen at any time, not just teen years, although it is probably more typical. I can't help remember one time when in the pediatricians office when I first wanted to talk to the doctor about my son having tics, the med assistant told me that her daughter (who was now 12) had three tics going on when she was in first grade (including a little vocal), and it lasted about six months, and that was it. Her take was that the nervous system was "maturing". We couldn't talk too long, but she saw I was upset, so told me of this. It gave me some hope and food for thought. Why did that girl have a few tics and than totally gone without any intervention? Something in the body has to be awry. Same thing with MS. Why do some go so long with remissions, and some totally deteriorate at a younger age? So it's interesting, but again I say why so little reference to TS? It can't be that it's so uncommon that it doesn't warrant any study. Frustrating.
So here we are, left to ponder. I bet if we all put our heads together in the same room for several months ....
Sorry if this is all over the place, just wanted to get my thoughts off my chest, but I'm still in my pj's so I'm not too articulate this morning!
Regards
Faith
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I too am frustrated about the hidden ingredients. We have to watch yeast and corn as these were his strong sensitivities on the test. I think I'm going to start investing in corn stocks, it's in everything!
I'm looking at words like dextrose and leavening. The labels don't say yeast or corn, but are these things that have corn or yeast in them? It's hard to tell. I know I've searched for what those words mean, and it says dextrose comes from corn sugar, so I guess that's a problem too. Just wondering if anyone feels its okay (not too much of an infraction) if the offending ingedient is way down on the list. Sometimes I've heard that the first five ingredients are the most, but I don't know, don't want to start any confusion.
Also, does anyone here make irish soda bread? From what I'm reading, it seems to be made without yeast, however I think the baking powder/soda could contain corn starch. (SCREAM!) I think I've had that before somewhere and I think its okay tasting. Just curious. My poor little guy had to have a hamburger last night with a flour tortilla that I fashioned as a bun. He was all teary about it. I feel so bad. He doesn't understand all this, but I am trying to explain how we just have to do this for a while. Its been a week that I have taken the negative foods away, and I believe his head shaking is way down, although I do see a few here and there, but definitlely better, praise God.
C.P. glad to hear your son is doing well, is his tic still a vocal? Even though mine is better in the motor tics, the vocal is still there. Any thoughts from anyone? I know I have to have patience and not think everything is gonna all go away overnight, but am curious to know if it could take a few weeks to see an improvement when taking away food sensitivities.
Kim, thanks for all that info, still soaking it all in. When your boys had a head shake, how long did it take to resolve? Are you still eliminating some foods for them?
Thanks all
Faith
Reading and Interpreting IGg test results
in Tourette Syndrome and Tics
Posted
Thanks so much for sharing all that information. I'm very impressed in all you've researched and tried, and elated that it seems to have worked so well for your daughter. I think it's invaluable to share all we've tried and learned, you never know what particular information is important to someone else.
The results of food intolerance test wasn't by numbers, just by category. Like foods in the "red"range were severe intolerance, "orange" was strong reaction, and "yellow" was mild. They list the food item under each category. The "green" are all no reaction. This is all "delayed" reaction, not immediate allergy. The following is quoted from the book I mentioned "Hidden Food Allergies" : " When we eat food, the body breaks it down into many small particles and eventually into chemicals like sugar, amino acids, and fats so that the body cells can utilize the substances. Thus, the body changes each food we eat into dozens of different byproducts. These chemicals and byproducts can be allergenic. It is the time lapse between eating the food and the body's creation of these products that accounts for the delay in the reaction."
There is also some mention that some believe that the histamine release has not been proven to produce the "cause and effect" in relation to symptoms and that is why this book is touting the elimination diet as opposed to the blood test. However, I do believe it is a worthwhile test if someone is searching for more answers. Did you find some culprits when doing the elimination diet? You mentioned you try to eat foods which eliminate toxins and metals from the body--just curious what they are?
I am on much of the same path as you and so far have seen improvement in my son's head shake, and feel it is due to the elimination of the foods he reacted strongly too for it improved only a few days later.
However, we are still dealing with a vocal sound which is not too bad, but has been there since just before school year.
Does anyone feel that different things cause different symptoms (or specific tics) in their child (or themselves), for example, I'm getting the impression his neck/head tics are triggered by corn products. Not sure, but just observing.
Sounds like you are doing an outstanding job--appreciate all your info and help.
Faith