faith
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Hi Nadine,
re the eye rubbing, mys sone does that from timet to time, (not with a closed fist, but with his fingertips and rubs downward). I have seen that over the years and he has had bouts with eye blinking. I'm not completely sure if it has anything to do with allergies, but that is always a possibility. I have experimented with eye allergy relief drops, but didn't note any obvious improvement. He has not blinked for most of the summer, but am noticing that going on right now (along with some rubbing) and hoping it will pass. ... So far his vision seems fine, and we have had about three full pediatric opthomology exams since 4 years old and everything checked out normal. (he is eight now). Last exam was two years ago, I believe. I have the same worries, but so far so good. Don't know if this helps, just letting you know our experience.
P.S. last semester the teacher told me he was pulling on his eyelashes and sometimes I see him doing that, not sure if it's tic related, probably more like a compulsion.
Faith
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Hi Michele,
Try to get whatever supplements iyou can in liquid or powder forms so you could mix it in a shot glass of juice (capsules can be emptied into the juice). You could also bury it in a tablespoon of apple sauce or pear sauce (i pureed my own from canned pears). That is alot of pills so just try to consolidate as much as you can. good luck.
Faith
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Caryn,
Not to confuse the issue, but was thinking how you came to think it was the taurine that seemed to decrease your son's appetite. Is it possible it's the GABA and not the taurine? I think you mentioned he was also taking GABA? Don't know why I was looking this up, but some things I have read suggest that GABA has something to do with fat metabolizing and could act as an appetite suppresant. Maybe you could look into that? Here is where I read that....
http://www.thewayup.com/products/0285.cfm
Faith
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agrajag,
Do you have any pets at home? Also, have you began any supplement, i.e. magnesium--that one seems to be helpful for eye blink tics. I agree you should investigate any allergy connection. What is Reactin, and did that seem to help so far?
Faith
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Hi Caryn,
Yes, I would say maybe reduce the amount of taurine too, maybe cut that dose to half and see.
I havn't used taurine for some time, since beginning of this year when I started all over with our naturopath. I had given that for a time when things were not too good around that time and it didn't seem to be one of the things making a difference, so don't know..........my feeling is that sometimes its good to stop or cut back on certain things when it doesn't seem to be working anymore, maybe the body doesn't need so much anymore and then it starts having the opposite effect? Also, maybe you could research what type of supplements seem to have the effect of INCREASING the appetite if you are worried about that? Are you giving zinc? Not sure if that is one that will do it but I am soon to add 25 mgs. of that and curious if others are using that.
The blinking thing seems to be what you described for my son too, I see that here and there, short lived for the obvious reasons like nervous talking to an adult, having to stand in front of room, tired watching tv at night, etc.
Regards
Faith
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Imcgill,
My vote is for the penecilin being finished as you say humming started shortly after that? How long was he on that?
I just want to mention again that I see my son "start and stop" certain tics. They are on my list of "minor" or not too noticeable ones, like I see him pointing to things purposely because I am sure he wants to jet his arm out, but he doesn't do it all day an some days I don't see it hardly at all. So just putting that out there because I know the feeling of seeing a new tic start and thinking it will escalate and your heart sinks and the blood rushes to your feet......sometimes a tic is just a minor compulsion and I believe the more of the health strategies we employ, the milder and shorter-lived some of these things will be........Today was first day of school for us and he seemed great all morning. I thank the Lord for His mercy, and believe all our prayers together are blanketing us all with strength...........
Michele,
if you are seeing a less frequency of certain tics, that could definitely be a sign that things are calming down and may be on the way out. Keep up what you are doing, sometimes the healing process takes some time to take hold. Did I read correctly - are you starting meds or were you referring to the penecilin?
Faith
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Calicat,
when you say neither of you tested sensitive for pollen, is that pollen in general or were there specific plants? For instance our allergy testing had categories like ragweed, trees, grasses, etc., but it didn't say "pollen" specifically". So just wondering if there were other type plants that you may be forgetting about. Do you have any suspicions about the cat for your daughter?
Thanks
Faith
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Pamela,
Just curious if your son ever displayed the common allergy symptoms such as respiratory, and do/did you ever use any conventional allergy treatment for him?
I too am noticing a little eye twitching last few weeks, and this does seem to the time of year I see this -- cooincidence, don't know? I am working on my own suspicions before I throw it out there.
Just curious about anyone seeing an increase in the last month -- any observations of recent tics and suspicions (especially with allergies) are appreciated.
Thanks
Faith
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1. 8 yrs. old now.
2. Not totally potty trained until just before fourth birthday, so he was wearing pull-ups to bed. I think
the bed wetting started (that I noticed) around five or six after being dry at night for about a year or two.
Not currently actually having accidents now, because I "night lift" him (about hour or two after he falls asleep. (he does wake up early in the morning and goes to bathroom on his own). My feeling is if I did not wake him, he would have accident a few times a week. Especially since I am always after him to drink lots of water.
3. I saw tics (blinking) start at age 3 1/2.
Comments: Just my opinion, but many, many children wet the bed, if you start mentioning it amongst your mommy friends, I bet you'll hear it alot, even with children who do not experience tics. So not sure if this is a related issue, although maybe there is something comorbid there. I myself had wet the bed till about 10 years old (not TS diagnosed but have had some repetitve compulsions). Any feelings or comments by others welcome.
Faith
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Are you guys getting bontech from the website or do they sell it at a natural food stores?
Also has anyone tried Greens Today Children's Formula. I found it at our local health food store but am really scared to try new things.
http://www.greenstoday.com/products/children.asp
I really want to get this tic more under control before school starts.
Hi Pamela,
I forget, were you previously giving any supplements? I havn't tried this product but it seems to have lots of good stuff it. The only thing I would make sure there is nothing in it that is one of your son's sensitivities, for instance I couldn't give that to my son because I see it has flax meal in it and that was his high intolerance on the test. Also look at the vegetable powders in case that was one of them too, i.e. carrot powder, tomato powder, etc.
I was also wondering where you got the info regarding doing allergy testing and supplementation info two years back, since you are a newish member to the forum? If it has been several years since you tested, have you thought of re-testing in case new allergies or sensitivities have popped up? I have mentioned before that my son too had seemed to have a great reduction in tics after eliminating corn (along with yeast and flaxoil) as those were his high intolerances. If things started to turn around after doing well for couple of years, I often thought to myself that I would do that test again in case new sensitivities have developed. All I'd have to lose is money
.Thanks
Faith
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hi mblack,
I know this is hard, and understand the feelings you have, but the best words of comfort I can think of right now is that you are still on the road to "healing". Healing for your son, and for your heart too. I don't know exactly how long you have been on this process, but it does take time for that healing process to really take hold. You may have some setbacks, but as your son gets healthier, I think things will begin to settle a little more. May I ask what you are doing in the way of nutritional supplements? Also, since you say your son showed alot of allergies and sensitivities, it may take some time to get this all under control, and he may show more tics since there ARE so many things he is sensitive too.
Now, my son is doing much better, but I try to look at the tics as symptoms, and some days I may see some tics poking through, and that is my signal to tighten up the ship. I am seeing some thingies going on this morning and yes, I'm worried too, but I feel I have enough knowledge to know what I have to improve upon, (like I know he has had way too many munchkin donuts last couple days) and I just have to have faith that this will pass quickly before it gets worse. If I don't pay attention to his diet, etc. I can be sure that would happen. I don't ever feel like this is all going to just go away and we can abandon all of our health strategies. I think we will have to be dilligent about his health issues for a long time. When you say you are doing all you know, try to think of all this as a process in healing him of the issues that are causing these symptoms. I look at it like a way to manage his symptoms and if you are seeing a diminishment in the intensity and frequency of his usual tics, then have faith that you are heading in the right direction. (BTW, I don't think pounding (is it more like a tap, tap?) his fist on the table is so bad, at least that is not too noticeable to others as a tic, that sounds more like a compulsion. Does he do this all day, or just when he is at a table? Have the other tics he started with seem to be under control? I see you mentioned he seemed better after some of his allergy treatments. Are you keeping up with that?
Don't know if what I am trying to say is of help, but just know that many of us have been this route, and there is no short cut, but I think if you just stay on the road, and ask for help when you need it, from us and from God,....you will find your way.
Blessings and regards,
Faith
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Thanks for posting the article, but you know, my thoughts are that its just an article, written by a reporter, so it is what it is - controversial information reported by a reporter -- we can discuss it till the cows come home, but what I suggest is to scroll down and read the "comments" section. There is good feedback and opinions from many parents who are really dealing with the main subject -- autism.
And this is interesting, since the DAN doctor quoted (Boris) is the one we see. Believe me, he is no snake oil salesman, he has a large respected practice, and is very nice man who I believe is totally interested in helping these children. And yes, I have mentioned that Actos was suggested for trial for my son given what he said in that he believes autism to be (an autominune disease), however my son is not autistic, we are dealing with tics, so I have not followed that course with this doctor. He knows I am not comfortable with it and is okay with that. I also told him of the course that I am following with our naturopath, and he doesn't totally agree with a couple things I did under her guidance either (he thinks Igg testing is unreliable, and thinks slow, gentle chelation via Metal-Free doesn't work) but in the end I do what I feel is important in my son's case, safe, and seems to resonate with my child. I think it IS important for everyone (parents) to know that many of these treatments ARE controversial, and so they NEED to do research and make an informed choice when it comes to treating their children, but in the end it should be THEIR choice.
As a side note, I have two friends in my area who each have an autistic child (I introduced them to each other) who do not see a DAN doctor, although one of them has a husband who is a chemist and so has the mindset to do all the research, and he has implemented many things, such as omega 3's, borage oil, enzymes and have seen benefits in different ways, for instance they feel his bowel movements and appetite (also a skinny guy) were improved after experimenting with digestive enzymes. My point being that they do what they are comfortable with and makes sense and is safe to them, and this, along with the ABA therapy and interventions, and I must state, a loving acceptance of who their child is, is what has helped them to overcome.
I encourage everyone to read the interesting comments under the article, there is some interesting opinions on the article there, (and many comments are exactly what some of us are probably thinking) but please don't forget they are talking of autism, not TS.
Faith
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Kim,
Have you ever had the pyroluria testing done? And do you currently give your boys zinc or B6? I recently asked my naturo about it and was a little surprised that she didn't seem to be familiar with that, but she did agree that he may need zinc. She did say I could order the test and she would guide me on it, but also gave us some zinc 25 mg. and a B6 (P5P) to try. What do you think? I probably should have done this long ago, my son is still pretty skinny for an 8 yr old (43 lbs, 48 inches tall).
Thanks
Faith
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Hi tlk,
I forgot to ask earlier, and was wondering, has your son recently had any vaccinations? I think there is one that kids get before entering kindergarten, do you know when the last one was? Just curious since your son's symptoms sound like they were brought on or at least aggravated by something. It is something we have discussed here on the forum at times where some parents have felt that vaccines have had something to do with bringing out more pronounced ticcing. Just a thought.
Also, when you said your son started change when introduced to solids or baby foods, it makes me think he may have some severe sensitivity to some foods. Have you investigated that route yet? We had done the elimination diet with a DAN doctor and didn't see any real results, but then I decided to do the Igg food sensitivity test just to get some direction (it is not always 100% accurate but I needed something). We found corn, yeast and flax to be his high sensitivities, and I had been giving him flaxoil everyday for some time. So when we eliminated those, we did see an improvement (although I am still dealing with a vocal). But, my point being maybe you should investigate that test, I think it might shed some light. We used a test called Alcat that our naturo did for us. You could do a search and read on it.
I'm not clear of any of the doctors you saw was a DAN doctor but they also do all the biomedical testing, so if you could find one, they could do alot of the testing.
God Bless
Faith
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Hi tlk,
welcome, and you sound like you are off to a good start. Did you say your child has only had tics for about four months? You don't mention if any of the doctors have prescribed antibiotics when they got the results of the titers? If so, did his symptoms subside at that time? What do they currently recommend to treat the PANDAS?
Also, are you using any supplementation at all? It sounds like you've seen alot of doctors for a diagnosis, but have any offered a protocol of treatment? The environmental doctor probably will be the best for this, or a naturopathic doctor.
Please try not to worry too much, (and I'm not one to take my own advice!), however, I think with all you are trying and learning, I'd be surprised if something did not seem to start helping or at least make a difference. Please let us know if the removal of egg and dairy seem to help.
You are in my prayers,
Faith
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Hi calicat,
could I ask how long things were good before the eye winking started? I know that one, my son has done that too, but when I see that it doesn't usually last too long? I have mentioned before that when I see that I make sure he gets the magnesium and sometimes add a little B1 for a few days. (totally my experiment -- Don't know the dynamics but B1 was something I must have read somewhere for eye tics.
Had you tried anything in the way of allergy treatment to see if it had any effect on the throat clear/sniffing? My son has a vocal sound (like a grunt) that I am trying to investigate if allergies of this time of year have anything to do with it. He was doing better spring and early summer too, and now seems to be doing it more than I am used to. Please let us know if that eye tic subsides quickly, it would be interesting to know if the tics our kids experience are shorter lived and milder at least, considering all the health strategies we are employing. Would you say your daughter has had less sleep this summer and maybe eating more junkfoods?
Thanks
Faith
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Hi Pam,
I don't know about using that on a child for constipation. I'm not sure if that is what its for. Although I have tried one for myself just based on reading that it is good if you want to sort of clean house (you could read up on them and people's testimonies using a search). The one I tried was called "First Cleanse" by Renew Life. Really it wasn't anything so great, not sure if it really did anything. Its supposed to be gentle if you never did it before. But I would inquire about using it for children.
If you are trying to relieve constipation for a child and just want to get things moving, I would suggest mineral oil (1 teaspoon twice a day). That's what the urinologist suggested when my son was first starting to toilet train and was holding it in resulting in constipation..... Ha, thanks for reminding me of that fun time!
Faith
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Michele,
Glad you went for the appointment. It's good to hear what this doctor is saying about the immune system. Boy, that is alot of tests, we did not have that many. Forgive me, I'm not clear on all your son's issues, its not just the tics, right? does he believe there is autism or just the ADHD?
Regarding the Actos, our DAN had suggested this for us on one of our visits, after we had the CBC, etc. and tried some supplements and elimination diet. Your doctor sounds alot more thorough, although I am guessing mine went a little slower, because, as I said, we did not pay the visit out of pocket like those on the autism spectrum do (I believe it would have been $750.00 for the consult visit). So I think we just took it one step at a time and did the tests that would be covered under allergy? Well anyway, yes, our doctor tried to explain about the autoimmune response and how the actos worked on repairing the myelin sheath, and I did do some research, and did start a thread on this which you could read, but in the end, I decided not to go that route yet.... We did do the elimination (GF, etc. diet) in which he gave us a written out plan of what exactly to avoid and what is okay. You will have to go to a health food store and get some items to start you off. Its not very easy, but we managed to comply 100%, and if there will be some benefits, you should see it within a month, I think. There was nothing dramatic for us and so I felt I wanted to see what the naturopath had to offer before I agreed to the Actos, and wanted to have the Igg tests and metal tests done first, which we did through the naturo as our DAN did not believe in the Igg testing (he believed it was not accurate) and have since followed that route. The naturo agreed about the Actos because it was a medication (used for diabetics, I believe) that we should go another route first. I'm still not too clear on how of if this is right for TS. I'd be interested to know what your feelings on this and the other things he suggested are.
here is the thread on Actos that we discussed on the board.
http://www.latitudes.org/forums/index.php?...72&hl=Actos
Faith
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Hello Sunflower,
Very good that you are trying to find alternatives to help your boyfriend, although its not exactly a one size fits all, so you will have to experiment a little. Is he open to this? If so, I would just read through some threads and find the supplements that many are using, like I would definitely start with some magnesium powder, you could find that in a vitamin/healthfood store. Since he is an adult, just follow directions on the bottles. Also, try some b-complex as that is good for nerve health. Also, try eliminating the obvious things like caffeine and artificial sugars. Keep reading and find ways to balance his overall health, that should be a good thing in the long run.
May I ask if he has ever explored natural treatments before? Did he ever take any meds as a child or teenager? I'd be interested to know the course of his tics, i.e. when it began and if it is milder now that he is older?
Thanks and good luck,
Faith
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Hi Michele,
I'm glad you have found a doctor who may be able to guide you on the PANDAS issue -- are you doing this for a second opinion? What type of doctor gave the penecilin v? I think you should keep the appointment, just the get an expert opinion, and it would be good to have a DAN doctor when you are dealing with these issues, a regular MD is not really going to offer that much guidance. You tell him what your concerns are and what you have done so far, he should be able to take it from there.... Did they tell you how much the visit will be? When we have our appointments, it is covered, I think because our DAN is an environmental allergist and that is how we went in, as an allergy patient, but I did tell the doctor what our concern was (the tics). The blood tests and allergy tests were covered and they did do the titers. We do pay for any supplements we get from him out of pocket tho.
I think it will be good to check out what he has to say.
Good Luck,
Faith
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Hello Pamela and welcome,
When you say he was "officially" allergic to the corn, did you mean he had an environmental allergy test done, or a food sensitivity? I am not clear on how long ago you started eliminated the corn and started supplementation? Was it when he was five, or recently? Because I am wondering how long the head tic he had has been gone as you said it went away once you eliminated the corn? Were you doing that for a long time? Perhaps there are some foods that have that as an ingredient that you are not aware of, such as some cereal, breads, even lunch meats can have them. Could you brainstorm on what it might be? We (and several others here) are eliminating corn for our kids too, and we all agree, it is NOT easy. I find it interesting that you say the head tic went away after you eliminated corn? I am of the impression that is the way it was for my son too. Although we have cheated here and there and I am trying to see the consequences, if any.
Also, how long have you been give fish oil? (I suppose you've read here that this is a problem for some?) Are you eliminating other things like colors and perservatives?
As far as the integrative doctor goes, I think the best is to just go over your concerns and give a good picture of what you have been doing so far, and I think they will take it from there. You could ask about alternative allergy treatments -- I do not know how much allergies play a role in my sons tics, but I do have a suspicion about it that I am working on, and I want to try something alternative too. If you want to ask if they do heavy metal testing, that is also something that could play a role. Does your son have any other issues aside from the tics and behavior you described?
thanks
Faith
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Hi C.P.,
I wouldn't be too nervous, although I'm not clear if your father-in-law is aware of the issue? or are you hoping he won't notice? That is what I am always up against, because I have not shared this with any of my family, although my mother knows the issues and what we are doing to help him, but she does not understand what it exactly is and I have just said he has to strenghthen his neurological system or he gets nervous habits. Usually he does great, and she has not really seen anything when we are together. My mom is an older gal
and gets so worried about my son. When this was a real problem during the last holidays, and we were so down, I actually had to make excuses and did not join my family for Thanksgiving. I praise God it is much better now.My only advice is to not focus on it, or even talk about it, just relax and enjoy his company and let him enjoy the kids. If your son is having a bout, call him out to do something for you so he will not be so focused on him one on one. As far as his diet, well, you are a healthy eating family and everyone is focused on good nutrition
.Faith
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thanks for the info on the carnitine. C.P. what form are you using, acetyl l-carnitine or just says l-carnitine? Same for Samsmom? Chemar, in case you missed my post above, which form did you use for your son?
Honestly, I am already chickening out, I gave one 250 mg. capsule yesterday, and am already imagining he is going louder. And then read a few posts which suggested tic increase, I am not going to give more today, so I think I just wasted $28.00! But that's okay. I think I have to try something I'm more comfortable with, that's what I usually suggest to others. For me, strengthening the immune response and helping the body along with detox seems what I feel is beneficial for my child. I have mentioned that it is getting harder and harder to get him to comply, he always wants something or other, and I can see he is not drinking as much of the water I want him to drink, I have to follow him with a glass and he'll take a sip here, sip there. I have to stop getting nutsy, I'm afraid to give the inositol, but I should try, and now this. Also is anyone here giving taurine with good results on vocal? I was giving that on my own last year, but when I started with our naturo I didn't give anymore, because we were doing other stuff, and he was still having the vocal sound before I stopped that in his supplements. Maybe I should put that in again........
Faith
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Hello Brian,
I'm happy to hear you have found some good direction for your son. I'm curious, did he just start this type of vocal recently or did he have that when you started implementing some suggestions from here and then it went away? Had he ever stuttered when he was younger? I mean, are you sure its a vocal tic and not a real stutter issue? What other interventions have you tried, other than the supplements you mentioned?
My son is dealing with a vocal sound now that has never fully gone away, but has eased up a little. He had a few other tics that have petered out once we eliminated some foods he was intolerant to, but the vocal still rears its head here and there. I may try giving the carnitine than Cheri mentioned, although I wish I had a better understanding on what it really does for the body overall.
Cheri (and anyone else who knows) -- while we are on the subject, I'm trying to read what I can about the carnitine, I'm just a little nervouse about trying something new and causing any havoc that I won't be able to fix...(the evil you know is better than the evil you don't know.........you know?
) Cheri, I am seeing a little conflicting info here, one which says you used acetyl l-carnitine, and then one in answer to Irena that says just l-carnitine is what you used for your son. Could I get a clarification please? Is it all just trial and error? Does anyone here have any negative experience with the acetyl carnitine? I thought that is the one I would try..... (for the vocal, that is).Thanks
Faith
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and gets so worried about my son. When this was a real problem during the last holidays, and we were so down, I actually had to make excuses and did not join my family for Thanksgiving. I praise God it is much better now.
.
MSG Info - HUGE Trigger for Son's Tics
in Tourette Syndrome and Tics
Posted
Hi Carolyn N.
I am sitting here thinking that YOUR post may be like an answer to MY prayers.....
Not that I am unaware of the MSG and aspartame that our kids should stay away from, but reading these labels and finding suitable snack foods requires a masters degreee, and it looks like I am way behind!.... Last couple of days I am seeing my son spike on his vocal and now seeing eye twitching all over the place. I have been trying to rack my brain and keep going back to these Barbara's crackers that he has had in last week, lots of them. I was suspecting a hidden name for corn, but now since reading your post maybe it IS msg in here and maybe he is more reactive to that than I have thought, since I'm always concentrating on the corn and dyes. would you or anyone mind seeing if I'm missing something:
ingredients of Barbara's Rite Rounds (like a ritz cracker type)
Organic unbleached wheat flour, expeller pressed high-oleic safflower oil, brown rice syrup, sea salt, honey, leavening (baking soda, cream of tartar), barley Malt, soy lecithin, enzymes.
Am I reading correctly that brown rice syrup could contain msg? And what about barley malt, soy lecithing and enzymes? anything there?
Here is a site I was looking at:
http://www.msgmyth.com/hidename.htm
what do you think? I have upped his magnesium when I see this spike in symptoms, and I noticed last couple of times I gave epsom salt bath (which I may have been a little lax on lately) I see a goldish yellow ring around the tub when I drained the water. Anyone else notice that?
thanks sincerely for that,
Faith