kim

Andy, This board is full of good news today. I have prayed for your son and family, literally. SOOO glad to hear you are seeing improvements. The path you took has taken guts. I find just the research is nerve shattering. You are a wonderful father, and it's nice to find a man posting, trying to help others and being so involved in their sons healing. Kim BTW thank you to you and Chemar for the remarks about soy and Dr. Mercola, and getting me to look in that direction. I really think it has the potential to be key in improving my sons health/tics.

daniel, AWESOME. Just the personal caring that phone call showed is worth so much. Also, that information regarding the TS is very valuable to newer people like me. With all of the threads I have read here, there is still a lot I have missed. Congrats with the response and keep us posted! Kim

htthttp://www.mercola.com/2001/jun/23/manganese. read second http://lpi.oregonstate.edu/infocenter/mine...nese/index.html htmp:/www.mercola.com/2001/jun/13/soy_formula.htm read first http://www.dartmouth.edu/~rmasters/AHABS/ read third http://www.dartmouth.edu/~rmasters/AHABS/N...rotox48dr22.pdf read last Hi all, It sure seems like a lot of different things can cause tics. If you used soy yourself or not, I think there is info here that everyone would get something out of, the last link was written by a Research Professor, Department of Government, Foundation of Neuroscience and Society, Dartmouth College. Soy products are found in so many common foods, if our kids have damaged abilities regarding enzyme production or uptake pathways, I can see where this may relate, wether you used soy as infants or not. Daniel, I agree with Claire, get your appt. with Pfeiffer. They are mentioned in the last article- link I posted, as is a lot we are all dealing with. Claire, are you using the enzymes? When you get a chance, can you update on results. Also, wondering what your DAN Dr. had to say regarding low zinc/copper. and if he was in agreement with Karen's description of what Pfeiffer had to say regarding the the body kick starting and eliminating it along with metals? Kim

efgh, I'm confused too. Why just DT? I found a DTaP; Infanrix- GlaxoSmithKline and Daptacel-Aventis Pasteur on the link that Chemar posted. It says no mercury, however it does list some preservatives. If you follow that link to the first page and click vaccines on the right and then on the small word within the text I think it says vaccine safety? It will lead you to this. It does talk about the DT vaccine and one has a trace amount if given in single dose, it will contain the higher amount if it's a multi dose vial. Does your Dr. give Pertussis separately? Kim

Chemer, I believe the "P" in DPT is Pertussis. I was confused by the OPV/IPV, then I realized the I was "injection" and the O is "oral". Jeez was it that long ago? I don't remember if they had Polio oral or not. I'm trying to find the table in the link you posted yesterday, I was sure it listed a DPT that was mercury free. I have been looking since I typed that one line can't find the darn table. Last night I was looking at youngest vaccine schedule. He received the Hep B the day he was born, and 8 vaccines by the time he was 4 1/2 months. MMr was given at just a little over 1 year, he quit eating shortly after that.

Chemar, Thanks for posting that link. I spent a long time on that one this afternoon. I got out my youngest sons vaccine record and used a site on there to check "hot lots-" on most of them, I came up with one or two reports. On about the third one I checked, I got 45 reports and that was only using a time frame of 0-1 year. After I signed off, I realized I should have checked about 0-5 years. There were a few reports of Autism and retardation, most were reports of fever and irritation at the injection site, a couple of cases of sids. Some reported babies screaming, and jumping in their sleep, as if in pain. I never gave Autism or vaccines much thought a month or two ago, and just quickly scanned the articles I ran across pertaining to these things. Now, it almost seems as if puzzle pieces are coming together, and the fit is a lot better than simply "genetically inherited tourettes". I don't think I have a problem with that diagnosis and am grateful this Dr. bought this abnormal movement disorder to a place that it was medically recognized. My problem is that it should be a start to the diagnosis, not the end. I do believe there is a genetic component, but as I read about thermerisol and even soy formula, if my kids had a certain genetic makeup-and even half of what I've read is true, had one or the other been avoided, the symptoms of this disorder may have stayed where they have been in our families (non existent). I remember reading a study about a certain type of white mice that they used in a trail. They said the findings were significant because there was nothing genetically altered about this type of mouse. It just had a certain makeup, that made it more vulnerable to damage than other mice. I'm sorry to ramble, but the more I read the more incredible it is, that our children have been subjected to such reckless disregard of Facts! And we are denied our right to even suggest, something else may be going on with mainstream Dr.s without fear of being viewed as paranoid and treated in such a condescending manner.UNREAL.

I was cleaning out some things under my "favorites" and came across this. http:// thinktwice.com/dpt.htm . These are some accounts of adverse reactions. I hate even posting this article, as I truly have no idea what I would do in your situation. I'm not looking forward to boosters either. The remarks people have posted here are a little reassuring. I went back 4 pages on this forum and found Andys post with the DAN guidelines for giving Immunizations. The thread title is " Vaccines?". Hope it helps. Kim

I'm sick, we just had my oldest son's hair cut. He has always worn it short sides with the short spiky bangs, but the trend seems to be a little longer. He was trying the longer look, got sick of geling in the morning, and got it cut(shaved sides) little longer on top. Can they test 1/4 inch of hair? We just missed this opportunity by 2 days. But.. I can finally order the yeast test for younger son (non eater, craves sugar) this is one of my biggest concerns at the moment. I do not have to worry about stopping vit. for yeast testing correct?

Rick, Thanks so much for taking the time to post that. I'm really glad to know it was an Endo. that said the same thing I was told. Two of my sons both had high MPV and Low neutrophils also and from what I have read, both can mean a lack of B 12. Neutrophils can be associated with low folic acid also. If you have your son's results handy, I would love to hear if either of these were out of range, and am wondering if your son has tic issues? Again thanks! Kim

Claire, I was reading on the enzyme board that you can order the hair test for metals yourself, through direct labs. They said if you type in "please apply special pricing for Autism group" under special instructions-the test is only $69.00. We have already discussed the hair test showing if heavy metals are present and being excreted, at least to some degree, but a negative result not necessarily meaning they(metals) aren't present in tissue, and not being excreted-thus being false negative. I'm thinking of what Andy said on another thread about getting Dr. to bill tests for mercury poisioning. If you had a positive hair anaylsis, it seems to me you may be able to get referrals, and at least get the main stream Dr.s attention, not to mention helping with billing. The poster did'nt say if a Dr. signature was required. My oldest son has been taking Bonnies's viamins and flaxseed/borage and I have seen results. I'm wondering if he might be excreting at least somewhat, if present. Since youngest son isn't on anything but a multi, I suspect he would be less likely to show anything. If you or anyone has done this with/without a Dr. signature, I would really appreciate knowing how it worked out. Kim

I called our local library today to see if they carried Children with Starving Brains, Is this Your Child and Evidence of harm. The first two, they did'nt have but are ordering them in for me. Should get next week. They said several Libraries carry both. Evidence of Harm a lot have, however they don't loan them out for about 1 month, since it's a newly published book, and keep them "in house" for that period of time. She said I should be able to check it out about 1 month from now.

Marie, You gave me my chuckle for the day. I too have been treated like the village idiot so much lately, I have to make this call just to get my quota in for the week. Kim Truly, I do think this is a great thing for as many as possible to do.

GL&L Mom, I was just wondering if your son is taking Clonidine/Catapress? I have started cutting back on this and out of the blue the other night, I realized that I had been spending so much time on the vit/supp. issues, that I really did'nt know about reducing/eliminating clonidine...so I did some reading and decided I was reducing too quickly. There isn't a lot available about weaning, but if your son has been taking it for any period of time, you MUST reduce slowly. I read one account of very painful headache at base of skull. This mom said she really thought her son was having a stroke. My oldest son has been taking clonidine for about 2 years. Over a month or more or we are now down to 1/2 of the dose he was taking, and I am going to reduce this amount slowly also. Don't have any other experience with meds for this condition, but please be careful and check it out if he is going to stay off for any extended period. I suspect abruptly stopping may be harmful or too shocking to the system with others also. Clonidine effects blood pressure and this is the main problem with eliminating, avoiding spike in blood pressure. Forgive me if this is all common knowledge to you. Just thought I would share-just in case. Kim

Claire, This financial burden is so unfair. Thanks so much for the call you made regarding the insurance. I just hope they don't say the same thing Health Plus did. They said the tests were covered, as long as the lab was local. So does that mean only Florida residents within 50 miles of Immuno would be covered? Didn't make sense. Sorry, off topic. Your thoughts on why the zinc levels may have dropped off, made a lot of sense, and there were what? four changes? I'm sure you will figure it out. You have to get that boy to keep using that lotion and taking his zinc at night. Have you tried bribery? Also, do you remember youngest has been ticcings unusually bad since he had the throat "virus" and his brother tested streph positive? I questioned it then, well he went in yesterday with a throat full of white junk. They started him on amoxicillian, culture should be back tomorrow. I think this has been there all along, maybe just mild enough not to show up last time? Or I guess if it's negative, could be a reoccuring virus that could be irritating tics. I'm betting streph. Worried about the yeast, with his diet and antibiotic, but interested to see the effect of the amox. on the tics. I know Pandas is usually characterized by sudden and explosive onset, but as more studies are done, I wonder if they will find these types of infections impact other subsets also. I read Ronnas post on how PANDAS is tested for, and about the streph titers. I'm wondering if you have ever heard of PANDAS diagnosis with gradual onset?

I'm really curious if anyone has read this book yet. I really want to pick it up, but there just aren't enough hours in a day.

Claire, Your post got me going on copper too this morning, just wish I could remember what I read I was wondering if your sons red blood count was normal. Since copper aids in oxigenation of the red blood cells fatigue with low amounts would make sense. I read where supplementing with vit. C causes a decreased copper status. Also, it mentions "zinc in excess" will have the same effect, although we know that didn't apply to your son. I just bought the Animal Parade multi for youngest son partially due to the fact that it has reduced copper. His old multi had 2mgs. the Animal Parade has .05. The copper does appear to be an issue to be concerned with, I never knew what a major role it played. I read about all of the things that it can have an affect on i.e. circulatory system, and cholestrol, triglicerides etc. and I wonder why these things aren't given more attention. Probably same old story; why correct something with a mineral when you can wait until arteries clog and treat with expensive drugs. While I was reading about the copper, I took another look at MPV which both of my boys were out of test range-High. I thought it was slightly high, after reading more this morning, I would have to say it maybe significantly high (one was 12.4) I also read it can be caused to be high because of a Vit. B12 deficiency. Another one both boys had,Low neutrophils: says the same thing, possible B12 deficiency. Is it common to have high enough B6 levels but low B12?

Claire, I have been reading the enzyme messages also. I ran across an interesting one that said that metals actually clear better as they bind to gluten and casein. This suggests using the enzymes may be preferrable to doing the elimination diet. I believe it was Karen that posted that information. Just wondering if you saw that and what you made of it. Kim

Lucia, I have not read where that has been a problem for anyone here. I'm in the process of switching right now. My husbands benefit center is sending info. on the plans that are available to us. We currently have Health Plus. I'm thinking that Blue Cross would be a better way to go, but will need to review what they send. The gentlemen I spoke with said he didn't think that Blue cross/Blue shield covered allergy testing. I hope he was wrong. Andy that posts here said to check into coverages as it can save a ton of money. I have two sons that I would like to have testing on and I certainly would like the help. It blows me away, that these things that can clearly be of such benefit to our childrens health, is so hard to access. I believe Dr. Walsh from Pfeiffer said 60 percent of his patients that have bluecross blueshield get covered. An hmo like health plus almost never. I didn't understand that remark, but when I talked to the benefit rep. he said what plans are available are determined by your zip code. So apparently there must be differences within the plans themselves, for different areas. Go figure. I would be happy to let you know how it goes. Feel free to PM me or a reminder post here. If you learn anything, please let me know! Kim

Hi Daniel, I am so sorry to read about your son and the fear it's causing. I have two sons with this condition. In regards to your question about transient tics, chronic tics, tourette syndrome; I have struggled with that question. My view is, it's just a label and discribes various degrees, duration and severity of the same issue. A transient tic in theory comes and goes and has been described as a normal part of development. Chronic tics are tics that last longer, can come and go for periods of time but usually reoccur over a longer period of time. A diagonosis of Tourette syndrome is said to have to have both motor and vocal tics occuring (although not necessarily at the same time) for a period of at least 1 year. I read somewhere that if one or the other dissapear (vocal or moter) the diagnosis of TS may not apply anymore. In the end, I'm not sure it matters. I saw a show on the Discovery channel and they said scientist believe, in some people there are more genes involved, in some people less. They showed pretty mild cases and some very severe. The man who had one of the worse cases had multiple vocal and motor tics and pretty severe obsessive compulsive disorder. He was finishing his degree to be a doctor. He was amazing. I'm wondering about the gene involvement or susceptability in a particular gene/genes. If there is a susceptability then our children may be more vulnerable, then someone with a different genetic makeup to damage cause by environmental toxins, infections, etc. etc. These are only my thoughts and there are many views on this issue and I learn something new everyday, and then I change my mind on some view I had! Hang in there, and keep reading. There are So many things to try to help control/eliminate tics, and some of the issues that can go along with it. I am one of the newer people here, and others have a lot more knowledge and experience. I don't know anything about potatoes aggrivating tics. I sure hope not as I have been having a lot of good old meat and potatoes with tons of fresh vegtables for dinners lately. Kim

Claire, Wow, I think how confusing it is to do any of this without a Dr. You have the best and it's still frustrating. It's really wonderful how on track your instincts seem to be. The six month tests would be hard, when your not sure if a change you made might be having a negitive effect. The hair anaylsis for metals, and ruling out a problem based on those results does seem completley backwards. It sounds like hair and blood tests for metals may be useless until the anitoxidant levels are up and glutathione is used if low? You have come so far with your sons progress, at least the latest testing showed two clear cut problems that can be worked on. Thanks for posting the detailed information Claire. I'm sure the waiting is hard. My thoughts and prayers are with you and your son, and also with Andy's son and family as tomorrow sounds like a big day in their program. Will look forward to hearing Pfeiffers recommendations and how you proceed. Is it your son who doesn't want to use the lotion anymore? Is this due to the rash? Sounds like the fatigue has been making him unwilling to deal with another irritant, or is it his Dr. who said to stop? Kim

Claire, ad-ccl and Andy, Claire, God has a special place for you reserved in heaven. As always thank you for the info on the enzymes. I have been scanning the emails from that web site-and there are a ton! I couldn't remember if I had read the enzymes or amino acics were something you shouldn't experiment with on your own-now I realize it was amino acids. It gives me hope that if I can't eliminate dairy, and I suspect wheat (he would eat pretzils all day if I let him) that there may be another way. These very limited eaters present a whole different challenge, when trying food elimination, which I agree with Andy, I think this is a key in at least youngest son situation. I'm afraid he will progress worse than my oldest son, due to this issue, and I think the sooner I can get real change there, the better. Andy, you're remark about the soy prompted me to go to the site Chemar recomm. and "there it was" my fear about the soy formula. When I read what he had to say about the damage it can cause to the immune system, I just wanted to cry. But, that is part of the reason i'm doing this, to have info. to share with my boys as they get older to give their children the best chance to avoid any part of this syndrome possible. I do believe there is a genetic glitch that predisposes these kids. By the time they have families of there own, I hope the mainstream medical comm. recognizes it also, and stops putting a lable on it, trying to prescribe a pill and shoving them out the door. I want immunization given seperately and with the DAN proticol also-thanks Andy(hope I get open minded-daughter-in-laws) I wish I had that info. when my kids were little. I knew there were risks, but no one had ever suggested that there was even a possibility that it could be safer to break them up, and give farther apart etc. Ad-ccl, I'm always so happy to see your posts. You and I have alot in common with our situations, and you're success with youngest son is an inspiration. Could you let me know what improvements you have seen in tics/mood, with improved diet? Please keep sharing, and let me know how your progressing with middle son. Any little thing in you come up is really appreciated, since so far I'm not getting anywhere quickly with youngest. He just started the Animal Parade yesterday with added zinc at night, about 18 mgs. and I'm doing my best to keep him away from junk. I will do more reading about soy, although he probably won't drink it anyway, and keep looking for something to replace the milk with. I keep suspecting, without balancing something in his system, I'm just not going to get anywhere with this. I will try for a while on my own, and then get him to some one (alternative MD) maybe after school is out. In the mean time I may just feed him chocolate cupcakes with puree'd (sp?) vegtables in them. We could both be happy for a day-little stincker would probably taste some thing "different" and not eat them anyway, even if I loaded them with frosting. Kim

Hi Claire, Oops 6-8 glasses of milk was Alisons son. Mine probably has about 4-4oz. cups per day, but he eats cheese, yogart and peanut butter and simply fruit (instead of Welches grape jam with all the corn sweetner, thanks to you guys) crackers- which he refuses to eat without MILK. So running out of milk and eliminating the other dairy means just about starving him to death. As I mentioned in a previous post, he has started baseball again for the season, and it's hard to see him go to school without his breakfast drink, and go all day and then run laps etc. at warm ups and games, with eating nothing, I literally don't see how he could hold up. Also another concern is when I had his blood work done, his calcium and magnesium were both at the high end of normal. If I remove the dairy, I'm sure these levels will fall. I can supplement, and will, I guess I felt that was a plus with all of the dairy, I didn't have to supplement the mag/ and calcium Marie had really wonderful results with juicing carrots and spinach, but mine would'nt even sit in the same room with a glass of the stuff. Once school is out, I may just try removal and offer fruit and peanut butter and tough out eliminating dairy. Claire, I would love to try enzymes that could help avoid elimination, however I know NOTHING about them. Would they be safe to try without supervison of a Dr. short term? Could you explain the sentence "I have personally noticed the Zyme Prime with milk and carrots the same day"? Sorry to be asking these questions of you, and I'll certainly understand if you can't reply. Also, I had remembered from a previous post of yours that zinc given by itself at bedtime was a good idea and that is what I plan to try. Thanks a ton as always Kim

Hi Alison, Thank you so much for the reply. From what you said I guess the bottom line might be to introduce the soy in limited amounts, if I can even get him to taste it, and watch carefully. He is SOOO sensitive to taste and a little phobic I believe, that this is like pulling teeth. The other nite he had 3 string cheese and a small bowl of cheddar and about 2-- 4 oz. glasses of milk in the evening. When I woke him up to use the bathroom at about 11:30 he had already wet the bed. He peed (quite a bit) at that wake up, and then his bed was wet again in the morning. I'm finding without even eliminating milk altogether, just keeping him off of it from about 4:00 pm on-he does better. However my main goal here is to get him to start eating normal foods, and I really think I will have little success until I increase some supplements, possibly a little more zinc then his multi contained and remove the dairy. I have read so much where zinc has an effect on the way things taste. Claire also felt strongly that his zinc was low at 76. I have decided to switch to a better multi, supp. a little with mag/cal and zinc (not exceeding ul limits in anything) and work on removing as much dairy as possible. This will be a slow process I'm sure. I am going to hold off on the pyroluria testing for now, as I'm afraid if the lab that does that test, even sent a report to my pediatrician, I might be banned from his practice also. I felt it was really apparent at the streph visit, that his attitude had changed, probably due to the letter the neurologist sent him. I can't bring myself to ask for a copy of that letter, as I feel unable to deal with the anger right now, and would rather focus on what I'm doing here. I'm so glad you were able to get to the bottom of the problems with your son regarding the soy. That must have been Horrible for both of you. Don't ever worry about being graphic, that information you shared could have spared my son the same thing. Kim

Thanks Cheri, I had found him and did just what you said, I typed in soy, and just looking at the head lines regarding it, I thought I might want to read it later! I think I'll check into your other favorite-hoping he Will provide balance after I scare myself to death. kim

Hi Chermar, Is there anything in particular he is concerned with, or could you tell me how to read his work? I have no idea who he is. My boys were both on soy as infants. Both seemed to tolerate well. I never reserched at all, just gave it to them because the hopital where they were born recommended it. After, I heard a few things regarding the powerful hormonal effects that soy can have. I felt a little uncomfortable about that, but it was far to late to debate at that point. Kim