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  1. From what I have read, the minerals in the water are a source of nutrition. I think the reverse osmosis filter removes all those mentioned, but not chlorine. Some of the minerals are absorbed through skin during showers as well, buy I haven't discovered any adverse effects from this, although the water treatment system salesman had quite a list. These were mostly skin issues such as dryness or rashes, none of which we have experienced. I'm not sure what the reverse osmosis system removed that is a trigger for my boys, but it was a noticeable difference - positive when we installed the system, and very negative very soon after it broke down.
  2. Thank-you. It was you who many years ago educated me on the necessity of reverse osmosis filters. the one that we had was extremely beneficial to my boys. I hadn't found any information on hard water and its effect on Tourette's, hopefully because there is nothing to learn. The whole house unit would remove magnesium and calcium as well as the chlorine. In addition to charcoal for removing the chlorine, the tank contains negatively charged resin beads which bind with the calcium and magnesium ions. The salesman mentioned that salt is added periodically, and I assumed he meant table salt. I do want the chorine gone, but was concerned about losing the magnesium and calcium. thanks again. You and this site are a wonderful resource for so many who are struggling. Have a great evening.
  3. Hi all, It's been a while since I've posted, but I had a question for the experts here! Two out of three of my sons have TS. I have tried every diet, natural remedy, and prescription for the oldest whose symptoms have always been more severe in addition to his being more sensitive about his ts. The youngest is more accepting of his condition and deals with it ok without needing to do more than watch his diet, take vitamins and avoid triggers. The only thing that ever significantly helped them both was the reverse osmosis filter we had for our drinking water and ice. A while back these started to disfunction and we had to go back to our regular tap water. Their tics went through the roof! We are finally able to afford a new filtration system, and had the salesman out for an estimate. He was pushing a whole house filtration-water softener instead of the reverse osmosis. Regardless, I am going to go with the reverse osmosis filter because I know how beneficial it is. My question for y'all is whether I should get both. The salesman's spiel was very convincing. The whole house filter softens the water and removes the clorine. This reduces calcium (chalk) build up on the skin and in the pores as well as purifying the water absorbed by the skin during showers. Any ideas as to the benefits of this in regard to the TS?
  4. This certainly is good news for the future of ts treatment! A question for any one with a theory: If autistic children who are successfully treated may hit a "busstop" with a diagnosis of ts, then what about a very young child who starts showing ts symptoms? Does anyone know if this could proceed to austism, if ignored? My posts here are usually in regard to my 9 year old, but his 3 year old brother occasionally blinks and hums. I really don't want to do anything at this point other than avoid metals, if I can and monitor diet and screen time. Any thoughts?
  5. Hi Kim Thanks for the heads up, but my son was not taking clonidine. Also, the meds were fairly new and low dose (tenex and topamax). Tenex is similar to clonidine, so I will research a bit more, just in case. I am a bit nervous about making this decision, but also optimistic. It has now been 4 days and all his issues are much better. It has actually been the only time in the past 2.5 weeks that he didn't have a headache and nausea. I feel terrible about putting him through this. He has been getting more and more resistant to taking his supplements and meds. I kept insisting, thinking that his objections were to having to swallow so many (and large) capsules. In hindsight, I should have listened between the lines. I did try to ask specific questions, but he was also non responsive to questions. That has improved as well. Good luck with your own son's elimination of clonidine. What supplements have you found helpful. (Sorry if it's posted somewhere already. My brain is overloaded right now!) Thanks again for the caring suggestion.
  6. Claire That is a good point. I was concerned about completely stopping the meds without permission from the doctor, but the change is so enormous that I decided that I'd watch for problems myself before calling. Our neurologist doesn't support our alternative efforts. He shows a bit of impatience when we show resistance to medication. I know he'd tell me to keep my son on the meds. Also, it is very hard to get a timely appt. with him. He has been working us in weekly for the last couple of weeks. I'm not ready to jeopardize that yet, just in case. Yes the meds are for tics-and depression.
  7. Thank you Jeff and Claire, Claire, I've added glutathione and selenium to my ever increasing list of questions for Pfeiffer. I plan to call them today. Just a curiosity. My son absolutely refused to take his suppliments (and the loathed prescriptions) Sunday night and Monday morning. By Monday afternoon he was much like his old self. His tics while still pretty bad were nowhere nearly as continuous as he had been experiencing for the last 2 weeks. He laughed and smiled and hugged so much that I almost cried. He was responsive to everyone around him. I hadn't realized how long (months) it had been since I had seen him show happiness. He was even able to do some homework. His tics had been so bad that he couldn't hold a pencil for almost 2 weeks. I hope I don't set him back by allowing a break in supplements, but I see this as a way to start over slowly and with no meds. I'd like to experiment with diet and screen limitation again as well. My 3 year old is starting to show symptoms so this may help him, too. It's curious to me that the little brother starts showing symptoms at the same time Luke's skyrocketed. I just have to be missing something that triggered it. Has anyone here had experience with a severe worsening of symptoms five months into starting a new supplement program? I don't think it could be a detox issue because we aren't really addressing the yeast or metals yet. It could have been the meds but the timing of his worsening tics didn't correspond to starting the medicine.
  8. Claire You said that your son resists the glutathione lotion. Is this just because of the time it takes to apply? He didn't have any discomfort from it? How much do you have to use at a time. How is it applied? I think I need to ask Pfeiffer about this for my son. If it just needs to be massaged into a small area, a back rub may work. He has grown very resistant to all of our efforts. Thanks.
  9. Jeff, I forgot to mention it, but I did cut out the artificial colors and flavors when we tried the GF/CF diet. I didn't cut out the preservatives however. It didn't even occur to me at the time, which was careless because I react to MSG almost immediately after eating something with it. I definitely will give the Feingold site another look. Do they give you a specific diet plan if you join, or are you just told to avoid certain things? I would like to try it on the whole family. My 3 year old just started having tics in the last two months. Claire, I am going to call Pfeiffer Monday and ask about the glutathione cream. I may ask if they'll erder the yeast test, or just let me try some nystatin. I've read that it is extremely safe. Did Pfeiffer test you for a glutathione deficiency or was it prescribed because of the metal issue? They didn't seem concerned about my son's metal levels because they were borderline, as were all the crucial tests. They rated him as Cu/Zn imbalanced and borderline pyroluric even though his values were in the normal range - as you noticed. That is why your yeast idea has such merit to me. It makes sense and explains what the tests don't. I'm still wondering about environmental allergies as well because when I review his history, there is always something there. His symptoms first got out of hand 5 yrs. ago when he started kindergarten. We had just moved into a new house with new carpets, paint, etc. as well. In September, our city was devastated by hurricane Ivan. There is so much mold and debris now that even normally healthy people are having severe problems. He's been getting worse all year. Our home was ok, but many places were flooded including his school, the grocery stores etc. Our yard was flooded with salt water, downed trees and debris from neighbors, but we had it cleared after about two months. It makes me wonder. Why is he getting worse right now - what else has changed? My comment on his poor eye contact as a baby was just a way of saying that I recognized a difference early on even before the tics, add and ocd started. Thank-you for the information on adrenal stress and exhaustion. This is something I haven't researched yet. I admire you, Chemar and the others so much for how much knowledge you gain through sheer determination!! You and everyone else on this forum are in my prayers that you continue to do so well. Your kids are very lucky. Chemar, Thanks for the Dr. Weil website suggestion. From reading it, I know I need to inquire about an omega 3 - fatty acid replacement for the fish oil which my son cannot tolerate. I wish I had your (and many others on this forum's) confidence. I just am to afraid to try anything without someone with more knowledge telling me it's ok.
  10. Hi all Thanks, Claire, for the great suggestions. I'll try to answer all your questions. Yes, I meant to say copper/zinc imbalance rather than Mg/Zn. My son's serum Cu level (Labcorp) was 65, Zn 92 while the hair analysis of the same metals were 46Cu and 150 Zn. The lead didn't show up in the blood while the hair analysis value for lead was only 1.1 this time ( 8 months previously it was 3.1) I can't believe that yeast didn't even occur to me this time! I had consulted with a DAN environmental doctor about 1.5 years ago and he told me that it didn't sound as if my son had a yeast problem. So when I asked at Pfeiffer and they said the same, I quit worrying about this one. They did say they'd order the test if and when I ever wanted to. I will ask for one in the near future. My son's supplements don't contain any Manganese. While he was taking the Primer, our Pfeiffer practitioner warned us that it could cause a problem, but it seemed ok. The following were recommended: Vit. C - 500 mg Pyridoxine (vit B6) -200 mg Pyridoxal-5-phosphate - 50mg TMG - 175 mg Biotin - 400 mcg methyl B12 - 4000 mcg Calcium carbonate - 500 mg Mg. oxide - 250 mg. vit D -200 IU fish oil - we had to stop this one - obvious ocd increase vit c - another 500 mg Zn picolinate - 50 mg vit E - 300 IU TMG - another 175 mg biotin - another 400 mcg taurine - 325 mg AFP peptizyde - 1 cap 3X/day with meals acidophilus in addition, they just suggested no-fenol and inositol. We're waiting to receive them by mail. I probably could have purchased them in town, but I've had trouble finding supplements with no coloring. Unless I'm overlooking it, Pfeiffer didn't address the glutathione issue. That showed up in a test I had previously requested (begged and tolerated being patronized for!) As for eye contact, he has no problem with people he's comfortable with, but he doesn't look his teachers or strangers in the eye. I think this is a self esteem issue rather than ts I have not heard of the adrenal stress test or adrenal exhaustion. Which specific amino acids does the Great Plains test measure? Our spectracell test last year, tested for a few -all which were ok. Again, thanks for all the suggestions and even more for the understanding. We'll definitely request the tests you suggested. Those who post here are such an inspiration.
  11. oops, I made a mistake with this post and can't delete it completely
  12. Hi again, Chemar, Thanks for the quick (and comforting reply). Did you do anything to reduce exposure to dust mites. I think I remember reading some of your suggestions before, but can't remember details. At the time I didn't think it applied to us because my son has never shown allergic tendencies. My husband sneezes 6 months every year!! Yes, because this all happened in the spring is one reason I became curious about environmental allergies. I really wonder if he's allergic to the air in his school also! Can any illness cause such a severe increase in tics that continue for weeks after becoming well? It could very well be that Pfeiffer's supplements were helping more than I knew and the interruption caused the relapse. I wanted to state for everyone that we really like Pfeiffer. They have been hands on and very available when I've had to call with questions or requests. And they don't think I'm weird for persuing this avenue of treatment.
  13. Hello again everyone I haven't posted here in months, but I regularly check the site when I can. Can anyone remember the thread discussing environmental safeguards for our kids. It discussed things such as which kinds of pots to use in the kitchen, air purifiers, floors and furnishings. While my son is still on meds, I've been searching for alternatives for years. Please don't tell me the problems or dangers with the meds, as I already know. My son was/is severly depressed as a result of his TS and possibly is genetically inclined. Even as an infant, when most babies stare at faces, he seemed uncomfortable or overstimulated with eye contact - who knows. He is the most loving, empathetic person I have ever met. He can't even squash a mosquito! Anyway about the meds, I really believe they have saved his life so far, but I also know that somewhere there is a healthier alternative. What we have done so far: Installed reverse osmosis water filter stopped using aluminum pans stopped using perfumes, both bodily and laundry tried several supplements all to no avail tested for strep twice - 1st was negative, 2nd positive antibiotics for 6 weeks had the Metametrix delayed food allergy test (+casein, gluten, eggs) went on the casein, gluten and egg free diet for 3 weeks - no change at all Had the Doctor's Data hair analysis +lead, aluminum, arsenic Had the SpectrCell nutritional analysis (deficient in ALA, glutathione,B2 and selenium) No screens for several weeks 4years ago- it helped for 10 days then tics returned No screens for a week recently - no help, and depression increased Traveled from Florida to Chicago's Pfeiffer Center - tested borderline on metals, Mg/Zn balance, pyroluric, elevated histamine; yeast not suspected Began their suppliment suggestions Continued for three months with no change Then my son got ill from a virus as did my husband and another son. With all three they were sick off and on for three weeks. Luke missed vitamins and meds because of vomiting for approximately two weeks as tics were progressively increasing the entire time. At this time the pediatrician did a throat culture which was negative for strep. Currently the neurologist ordered the blood test for strep. We're waiting for results. Sorry so long - almost finished! My son hasn't been to school in 10 days. He is constantly ticcing with eyes, neck, arms and legs simultaneously, especially when trying to do his homework which is piling up. His behavior has always been exceptional and up until now, he has been a straight a student with a few b+'s - with a LOT of parental participation in keeping focused on homework - this to the point of having no life. Are there any suggestions? Lastly I'm curious about something. The two books that have halped me the most are "Children with Starving Brains" by J. McCandless and "Is This Your Child's World" by Doris Rapp. But these two books don't have any overlap. I had loosely followed the McCandless book in my son's treatment, but Doris Rapp's book has a whole different approach. My question - has anyone gone the environmental allergy testing route with a physician experienced with AS kids and seen some relief. Her description of allergic tension fatigue syndrome sound exactly like my son. The muscle weakness and fatigue not usually associated with pyroluria etc. can be explained with this. Again, I'm sorry about the length of this post, but our entire family is at the end of our rope. Thanks in advance.
  14. I found a pancake recipe in Tracking Down Hidden Food Allergy by William Crook. 1/2 cup rice flour 3/4 cup oats (whole grain or quick cooking) 1 Tbsp. Cellu baking powder 1/4 tsp. baking soda 2 T. honey 2 Tbsp. safflower or soy oil 1/2 tsp. salt 3 Tbsp. apricot puree (to replace egg) 1/2 cup Soyquik Place 3/4 cup oats in blender container; cover and blend until the oats are like a fine meal, then add formula, oil, honey and apricot puree. Beat mixture until smooth. Drop by tablespoons on lightly greased griddle set at med low to low heat. Let pancakes cook until fairly well set, then tu4rn carefully. Serve with honey or maple syrup. This is how it is printed in the book. My guess is that the other dry ingredients are added to the oats. Soyquik must be what he is calling formula. Hope it's tasty!
  15. I remembered one more question. Is goat's milk an acceptable substitute if one has casein allergies or only if the allergy is cow's milk?? Thanks.
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