Claire

efgh, I just saw this reading my daily digest from the yahoo enzymes and autism site. Didn't your son have a reaction to dairy? I don't have a link, but the date was Tuesday, April 26, 2005, from mom2steven get the mercury out of vaccines... "I found out the DTaP is grown on casein (milk protein) which my doctor was not aware of it. I talked to the vaccine maker and they confirmed that anyone who has a milk allergy should not have DTaP." She tells a horrible story of her child's reaction. However, if you can believe it, he was given MMR, Polio, Hep B and DTAP all on the same day in 2004!! What did you ever do here? Claire

Hi Daniel, Jean has experience with homeopath, you should post to her. In the end she is also seeing a DAN doctor. Pfeiffer's MT promotion is intended to ultimately remove the diet restrictions. Houston Nutriceuticals enzymes may do this a bit. Re Nystatin, I thought it came from potato and you were allergic to potatoes. Again, a rash isn't always a bad thing as it could mean die-off. But you need a doctor to manage it. My doctor said stop, cut back and restart until the reactions aren't bad when my son seemed to have die-off from yeast. Heather's son had a rash initially from Threelac and yeast die-off, but it went away as she cut back I believe. Andy and I make the same point. Who wants to wait years to hope that it will eventually resolve. My best advice is to see a DAN doctor, (from the list at the top of this forum), have them test for metals, antioxidant, vitamins, pyroluria, yeast (unless this is known, given the nystatin). Ask them about enzymes for the diet restrictions. As things progress, possible Pfeiffer for MT promotion--assuming your son is a candidate. Diet restriction alone is NOT the answer for many, just as TV restriction alone isn't for others. You must heal the immune system. However, sometimes those restrictions help the body get back in balance more quickly. Claire

Andy, Great point on the lead vs mercury contrast! I read an article where mercury was in teething powder causing all sorts of problems. The medical community denied any correlation, but ultimately it was removed and the problems went away for the newer babies. I believe it will be the same here (well, there is still mercury in flu vaccines)--but that won't help our children. Heck, we KNOW some of them have mercury at toxic levels. For the community as a whole to ignore that is no different than ignoring lead in the blood in my opinion. Claire

Ah, potatoes, I forgot that. This site is mostly parents with kids whose tics started in the last couple of years. Only one is 14/15 and that is Chemar's son, and she resolved his main issues by alt. treatment well before then. So no data there. On Braintalk, some have written in to say their kids tics resolved themselves in that time period. I think those stats on improvement are historical for TS and do not necessarily reflect this new generation of kids who had mercury vaccines in the 1990's through 2001. Nor the daily up close exposure to aggravating (for many) CRT screens. However, for those for whom it did/does apply....I read where zinc deficiencies are worse during growth spurt years and many issues settle after that. Or of course simple maturity. But I would never bank on the odds when it comes to my son's health. I had bad skin during my teens the middle school teasing affected my self esteem for many, many years afterward. To this day I would like to have those same kids see how well I turned out. (I live in a different state now so I don't see them ever). You only get one childhood, I want my son's to be happy. And I consider my son is a success from treatment from a tics standpoint. Not one tic in 18 months now. This fatigue is greatly caused by middle school and immune issues (he didn't have it before). For 2 years he couldn't tolerate even 10 minutes of CRT exposure nor big screen movies, and only limited LCD. Now the only thing I don't test is CRT--no point there. So I can't claim 100% success because I am unwilling to test him...I think CRT flicker is an aggravator regardless of tics and want no part of it (I don't even do CRT's anymore). The school and the special diet require careful planning by adults. I think it is terrible the way elementary schools have a constant flow of junk food in the first place, but it is real. We solved this by always buying/bringing treats that he could eat to such events that everyone liked so he didn't feel different. Even so it wasn't perfect by any means. Kids don't want to feel different, it is awful. But food allergies are pretty common and much more accepted than tics, for better or worse. Even so when I was a teen I resented that everyone in my family got chocolate at Easter and not me due to my skin issues. I still remember that and don't think it was necessary. So no one in our house has milk or wheat. I think childhood is about joy. Some parents here have made changes such that their families are more joyful now. I think much of the burden is on the parent to be superhuman--to ease their child's burdens. Claire

Mari, I am glad you found the DAN list (the site editor posted it at the top of this thread). They are usually conservative in supplements and definitely meticulous in blood, stool and urine testing. My personal view is to make sure you get an MD, as some of the others may be quite knowledgeable, but they cannot legally order many of the tests. Like Andy, I think that treatments should be customized based on testing. Jean gave good advice about fish and mercury, since mercury/metals seem to be a common problem here. Andy's comment on fillers is key--good to get supplements without irritating fillers. Claire

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GL&L The tricky part is that you stopped both supplements and prescription meds at the same time--tough to know which it was? (I think the prescriptions are for tics?). The impact of meds can be cumulative. It also could be a specific supplement or two. Yes, I would reintroduce slowly one at a time and see whether I noticed a worsening of mood and tics. Wait 3 days between each new supplement. (This is why I am not big on compounding initially). Maybe talk to a doctor about the meds? Don't know if cold turkey is okay--no experience there... In any case, I would take this positive change seriously and try to assess what did it. (Were there any other changes?) Maybe continue for a few days (again, I can't comment on the stopping of prescription meds) and see if it continues. Good luck and I hope this is the key for you. Claire

Mari, Wow, that is a lot of vitamin power. Your EM doctor is very aggressive in treatments. I tend to be much more conservative, though I am not a medical professional by any stretch. Our DAN doctor was also much more conservative than that. Usually I suggest that people supplement under a doctor's supervision, but it sounds like you and I both have experience with doctor's supplementing more than our gut says is okay. My vote: Go with your gut if it is more conservative than your doctor. Especially since your son seems to react easily to medications in general. Here is what Spectracell lab listed as daily recommendations for children 6-10 with KNOWN deficiencies in those vitamins: Note mcg is micrograms vs mg millograms B12 1000 mcg Folic acid 800 mcg B6 25 mg Magnesium 200 mg Biotin 1000 mg Calcium 500 mg Inositol 1000 mg They have no listing for Iron or Fishoil, but the prevailing wisdom here is to not overdo iron unless there is a known deficiency. I believe 18 mg is the normal daily requirement, assuming they don't also get fortified cereals, etc.. Some kids are definitely more sensitive to supplements (Jean's son seemed to be also). Whatever you decide to do, I would start with one vitamin and watch for 3 days before adding another. Also, keep in mind that the B's tend to work in balance with eachother. For example B6 needs B2. Also, I don't see anything in the way of antioxidants. At least perhaps take Marie's advice and juice some veggies to get enough vitamin A and vitamin C. I don't know the tests you refer to, maybe someone else does. What vitamin deficiency tests did he run? Your EM doctor seems to review different things and approach it differently from some of the others here. That is not a judgement, as there is no clear right path right now, it is just that we may have less experience in that area. Good luck. Claire

Daniel, You are right, we don't know yet what exactly works and what doesn't. We are learning. I suspect a year from now on this board, there will be more clear indicators of what treatments seem effective. Right now, we have more reached a state of identifying some common underlying issues, with just a little positive feedback on results. As long as we test regularly and observe what works and doesn't for our child, I think we are okay. I won't follow any doctor blindly, but I do think there is more risk of issues for doing nothing than doing something at this point. As for the nystatin, die-off can cause rashes, though I suppose an allergy could also. Did you stop it and try it again a couple of weeks later with a much lower dosage? Our DAN doctor made us wait until the antioxidants were higher to use Nystatin because the dead yeast is a toxin too. Something to consider (we measured this using Spectracell). As I posted on my EM thread, my own rashes, likely from the glutathione lotion went away when I started epsom salt baths. By the way, my son's photosensitivity was improved dramatically by the DAN treatments. I was trying to go the extra step with MT promotion to reduce supplements. Yet Jean's son has shown that a similar treatment brought more problems early. So we are back to you are right, we are all figuring this out, and to me the most vital part is a good alternative doctor and going with your own parental instincts during treatment. Some doctors know much more than others, and more importantly, some are more open to continuing education. For this reason, I think our DAN doctor is awesome, if not 'all-knowing'. I come back to no choice for us to try, given my son was becoming increasingly photosensitive when I did nothing but avoid triggers. These issues are so similar to the ASD immune issues that I do think a good DAN doctor could add a lot. Good luck. Claire

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Andy, I just want to caution you that stool tests for yeast are notorious for false negatives. Yeast clumps and they don't always get any in the part of the specimem they culture. We just had a stool and urine test done by the same lab at the same time and the urine was highly positve and the stool was still negative. This dual negative stool/positive urine has happened twice for us now. If you doubt this, call the lab directly--they should speak with you (Great Plains will give you a telephone appointment for example). Especially during any kind of chelation, the risk of yeast in the gut is real (though less for the method you are using. Yeast is key as you know, or mercury just moves from one area to another instead of leaving the body. Doesn't mean this is the case for your child of course, just being cautious. You know this is a challenge for us, so hard not to extrapolate it to others. For us, the low mercury in the blood, though a good sign of progress, didn't mean no more mercury in the body tissues after all (based on the recent hair result). Not that it mattered in that we are continuing with antioxidants anyway. Claire

Heather, Jennifer told me that Alka-Seltzer Gold is good for yeast die-off. I have tried it myself and think it works. I saw it on the enzyme site also. We have restarted Nystatin for my son. He only does pills once a day now, which makes giving Nystatin (should be 2x/day) less than ideal. Claire

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Hi Heather, Hope you are juggling everything okay. Chemar is the supplement expert, so I will defer to her on that aspect. I assume you do cal/mag which is relaxing already. I know you are an expert on yeast elimination, so I will safely assume that isn't a cause. My son's fidgeting went away with food elimination. Since that is a pretty random thing to try without all the testing, my suggestion would be to try Houston Nutriceuticals enzymes, the AFP Peptizade (for proteins) and the Zyne Prime (for carbs/fats) for a couple of weeks, and see if that helps. If you call the company, they would tell you how to begin. I know you were doing some anti-yeast enzyme, but supposedly these seem to be very good with foods for kids who have issues. Oh yes, the Epsom salt baths are wonderful for relaxing at bed--I recently tried them myself and they really do relax me. Not sure if this carries over to the second day, but it is good for sulfation issues and they can cause fidgeting. Don't know if you saw my post that my son's excema is finally almost gone away, with the latest yeast treatment. I found a good reference for supplements that I want to check out--it is called Braintalk and they are whole foods based vs synthetic. Although I just spent a ton on 4 months of compounded vitamins, this is good to know for the future. Good luck. Claire

Hi Karen, Yes, it is only one blood draw (the needle goes in once and fills multiple tubes) that is why I recommend both at once. I hate to keep bringing a child back for blood. I think that for most here who already avoid chemicals, preservatives, molds and artificial ingredients, the $300 food sensitivity test is sufficient, vs the $600 comprehensive one. Claire

GL&L Great Plains showed me having a glutathione deficiency. Again, no prescription is needed if you use Kirkman's, but I know you want doctor authorization, as did I. This is a big factor. I can't believe that they are ruling out metals due to a borderline hair test. The entire DAN community discusses false negatives on those, even Dr. Walsh commented on it earlier this month when I saw him speak and he is the thought leader for Pfeiffer. I would question this and ask both about the lotion and selenium (the daily adult RDA for selenium is 50 mg I think, so maybe you can ask if there is any harm in supplementing it). Yes, our DAN doctor says Nystatin doesn't cross into the bloodstream and is safe, unlike Diflucan and others where liver tests before and after are needed. If you do test, please do the Great Plains metabolites test vs any stool test--the stool test gives so many false negatives cuz yeast clumps, so hard to get a sample. We had a Great Plains stool negative and urine super super highly positive in the same test. Mold is a huge thing and could actually be a big culprit for your child. I didn't see a HEPA air filter on your list but I recommend it from what you described. You might do a mold sensitivity test at some point. What a terrible consequence of the weather, one I hadn't thought of. Good luck. Claire

Marie, Where did you see that Purell has mercury in it? I did a search and couldn't find anything. We use this often--when my son comes back into the car from any number of places, in an attempt to reduce colds. I know there are normal hand wipes available that I can use (I am avoiding 'anti-bacterial' because I read it isn't good over the long term), it just isn't quite as convenient, but I would switch in a heartbeat. I did read that there is mercury everywhere, which is why it is important. I wanted to tell you, since you posted on juicing, our juicer broke, and this time I got a Jack LaLane juicer--more expensive, but quieter, bigger opening (less hassle to cut up the veggies), and I love it. I am now getting myself to drink along with my son, which I only did occassionally before, and am cutting back on the Vitamin A/Vitamin C supplements we each take. With the enzymes, I am cutting back on B's also...he still has a lot to take, but we are down to only one set of pills a day. Alison, Delighted all is going so well! Bread is the toughest when gluten free, but after 6 months, my son forgot about the wheat taste enough where he actually likes Food for Life Brown Rice bread. (I still don't though). EXCEMA With all our recent anti-yeast program (no-fenol and nystatin), his excema is all but gone again, hurrah! ENZYMES--for Kim I am reading the Enzyme book Jennifer posted (by Karen DeFelice) and I used an idea of hers to great benefit, with my own customization: 3 Guittard semisweet chocolate chips (the are bigger than normal chips, no milk, nothing artificial), and I dump in both Houston Nutriceuticals PrimeTime and AFP Peptizade in it and stir it. You can't tell! We tried the chewables, and I like them, but there is a slight aftertaste that my Super-taste buds son didn't like. To melt the chocolate, don't get it too hot, or it will affect the enzymes. Shouldn't be too hot on your tongue and it is okay. Of course, I am not big on lots of sugar, but it is all about trade-offs. Thanks, Claire

I am glad to see Pfeiffer encouraging more of the enzymes. The thing with low antioxidants and metals: If you don't raise the antioxidant level (in this case likely glutathione), the metals continue to accumulate. This means that symptoms don't get better, if anything they can get worse. Your son minimally has lead, aluminum and arsenic, and a negative hair test doesn't rule out mercury. We have threads discussing tests for metals, there isn't one best one, but certainly the Great Smokies elemental analysis blood test has no side effects that a urine challenge can have, so I would start there. If negative, then reassess...if you are doing antioxidants, it will deal with them anyway. Though I think your current program doesn't address it nearly to the same degree as I have seen, and I think that is worth a second look. For lead detox, I know Pfeiffer likes calcium, so good to see they have that there. But the glutatathione is probably the biggest antioxidant in the detox mechanism. Most here that tested were deficient. Standard DAN protocol to remove metals now has the lotion (Kirkman has it if your doctor agrees). Pfeiffer agreed I should use it for my metals (I went myself to Pfeiffer 2 weeks ago). They were also going to put me on an antifungal but I will use our DAN doctor. He is for the glutathione lotion also. Pretty universally accepted, though as always, consult your doctor and watch your child carefully. I am surprised Pfeiffer didn't supplement selenium for the metals, they did for us. Oral Methyl B12? Not to well absorbed. When I mentioned this to Pfeiffer they said to do the sublingual instead. We did the Solaray gum and now Natural Sources sublingual tablet to put under the tongue (nice taste). B12 deficiency can cause anemia and fatigue, but I imagine that would have shown on the Spectracell test, so you are probably okay. Good to know the eye contact isn't an issue with people he is comfortable with, I misunderstood or mis "extrapolated" your comment on him as a baby. The serum copper/zinc copper was .707, and .70+ is normal, per Pfeiffer. So the very low end of normal, not really so bad. And the zinc itself is okay. Actually, the copper shows below the ref range of 70-155, did they comment on this? I ask because in researching adrenal issues, you do want copper to at least be in range. I worry about this with my son with our recent zinc supplementation and am anxiously awaiting Pfeiffer's latest tests. Here is the number for the adrenal stress test. I can't remember the exact URL. (425) 251-0596 It is Diagnos-Techs I think, but they can tell you. The site isn't so informative, but you can search on adrenal stress or adrenal exhaustion and find a lot of info. I strongly recommend this one for depression--it has its own requirements to be addressed. First there is adrenal stress (I imagine a ton of tic syndrome kids have this, just by the nature of the overwrought nervous system), then adrenal exhaustion. As for Great Plains, go to this link: http://www.greatplainslaboratory.com/yeast.html On the right they list: Organic Acid Test (has the candida/yeast albicans metabolites--ie the yeast test) Amino Acids Both can be done in one morning urine test. We did Spectracell also, but this amino acid profile is different, only some small overlap. We just started a balanced free form amino acid tonight, wish me luck with it helping my son's fatigue, my fingers are crossed big time. Ironically, after all the testing and finding just certain ones deficient, Pfeiffer's recommendation was to get a generally balanced free form amino acid, and more protein supplement, and add Houston Nutriceuticals Zyne Prime to the mix. I am also ordering some protein mixes (Robin's recommended brands), they come tomorrow. My typical disclaimer (not for you but for nonposters whom I don't know): Amino acids definitely need a doctor's supervision! They are known to feed yeast, and balances are important. Fatigue/Depression can also be a blood sugar thing. My son's fatigue may be a blood sugar thing too so we are looking at Glutamine (he was just on the border there). If money is a factor (depends all on your ins coverage I guess), I would rank the yeast test and adrenal stress tests as first priority. Both can be factors with the depression (yeast is exhausting), and I know as a mother that the child's happiness is the thing that is our biggest weight. You should be able to get medical input on glutathione without further testing since he was already positive, though the Great Plains OAT test will check this from another angle. No one can guarantee what tests will show, but at the very least you can rule certain things out. My point is mostly that you haven't hit a dead end at all. There is a good chance that metals and/or yeast are likely factors. God bless, and I especially wish you well on the happier kid part in the short term. Claire

Ah Kim, So sorry about the confusion with Alison's post right above yours. I was sooo tired this morning (can't figure out why) that I posted that and slept for 1.5 hours cuz I couldn't keep my eyes open. Oh, I get it re Milk now, he won't eat without milk. I understand how these kids can be--I have one! Enzymes are definitely worth trying. Enzymes are the one of two things that I personally think can be done without a doctor's supervisions (the other is a good probiotic)--and if you read my posts I have disclaimers all over the place that I suggest a doctor's supervision for supplementing about normal daily allowances of vitamins. Well, I was trying to be polite and vague, but raw carrots (not the fresh juice) give me the big D (without enzymes) and milk gives me gas (without enzymes, presumably lactose intolerance). I must have tried both 15 times with and without enzymes to really prove it (since I am the one who suffers). But as a parent, I would suggest you get a couple more opinions beyond me: The woman Karen DeFelice who wrote a book on Enzymes posts on this site. http://health.groups.yahoo.com/group/enzymesandautism/ I would post to her and ask her opinion. I would ask if you give it every time he has milk--all those details. In fact, I would go through that site (you are good at research) and read lots of people's experience with them. Most, but not all, use Houston Nutriceuticals. Pfeiffer says that brand has the best success. Dr. Houston is called the father of enzymes by some--he has been doing this so long and used to do it at Klaire Labs. I would also call Houston Nutr (who sell them) (866) 757-8627 and ask them the same questions--Trish there (Dr. Houston's wife) is great about answering any and all paranoid and/or intricate questions. Our DAN doctor said they could do no harm. However, you need to start slowly----just to make sure your child doesn't have a reaction (e.g. stomach aches). And start with one enzyme for a time (I think it is 2 weeks). I get my son to have juice by saying he gets a little (soy) ice cream afterwards. No veggies, no dessert. I give the carrot juice plain--as the sweet touch to wash down the broccoli juice. A little fresh squeeze apple juice in the broccoli juice never helped him like it, though I liked it myself. But if your child won't eat it, you can't force it. Kim, my son had a calcium deficiency when he was drinking milk. Now that I dropped the milk completely and give the RDA of calcium, he is normal again. Good luck! Claire

Kim, I really do intend to stop posting for a bit, but am not doing well yet... If you want more zinc without exceeding the RDA, then I would give it by itself at bedtime if at all possible. Absorption is much better. As for the folic acid, niacin thing and Pfeiffer, they are not very clear on the site. I asked the Pfeiffer doctor, and hers is only one opinion, but she didn't want more than 25 mg Niacin (any kind) and DID want some B12 and folinic acid supplementation (vs folic acid for some reason). More reading was that the folate levels are hard too manage...my son had a folic acid deficiency earlier AND was undermethylated. Apparently this isn't uncommon. In the end, even with undermethylation, Pfeiffer wanted 400 mcg folinic acid (not folic acid--that is why I liked the Kirkman vitamin, and now I am going to compound them), plus 2500 mcg oral B12, which I told them to change to 1000 mcg B12 sublingual and they agreed (don't know why they said oral in the first place). As for niacin, we tried to restrict it per Pfeiffer and my son was borderline low, so now he gets it again. So we do the daily allowance. In the end, my DAN doctor figures the normal daily allowance is fine--except for copper and manganese, and maybe iron. If you really want a pyroluria test and your only reason is not to have your doctor see it (don't blame you), then Biocenter Labs in Kansas does it without requiring a doctor's name at all--meaning they absolutely don't send one to your doctor (unlike the DAHC lab). If you also have other reasons for not doing it, then never mind. If you do Biocenter though, I would add an extra ice pack. Soy is an odd one. Alison is right about it being a common sensitivity, and we were told it can slow down adrenals. We still do it, but he isn't sensitive to it (per the tests) --though he was sensitive to milk, so we just limit it. Chemar is right, Dr. Mercola is also very anti-soy right now. A dairy habit is tough to break--have you considered running out of milk for a few days to break the habit? I just say this because you seem to find a clear bedwetting correlation, which implies other issues with milk. Also, if he was drinking that much (6-8 cups) it implies that old 'addiction to the dopamine' or whatever. My son drank 4 cups a day--he adored it. I didn't even try to substitute the milks, just did water. If not, then my next suggestion is bad to the AFP Peptizade by Houston Labs to see if it makes a difference in how he handles dairy, then the zyne prime two weeks later. I am starting to repeat myself on enzymes, but this is one thing I think is worth trying when diet can't be restricted. If it works, you will know soon enough. Then you can drop it. I personally noticed the Zyne Prime with milk and carrots the same day and retested and retested many times. Don't know how you would deal with that volume of milk though--you can call Houston Labs and ask them. Good luck. Claire

GL&L mom, Your efforts are amazing--so sorry for your luck so far. You really are doing almost everything that has been discussed. My thoughts: 1. I think you meant Cu/Zn balance, not Mg/Zn balance? What exactly were his copper and zinc levels in that Labcorp test? This is apparently a big one. 2. Borderline metals in the hair, generally means high metals in the tissues. Both Dr. McC and the DAN consensus paper say that kids with metal issues don't excrete them well, thus the hair readings are very often much lower. 3. I do have one thing that comes to mind: Yeast. Pfeiffer doesn't regularly check for it, which suprises me. I am not sure how they can say they don't suspect it. After 6 weeks of antibiotics (known yeast aggravator), and with the food sensitivities showing up, then it sure is a red flag to me. Since you read Dr. McC book, you will know that she says that progress can stop cold if there is a yeast overgrowth. It does a number of things (nutrient absorption, food sensitivities, and interferes with the metals exit from the body as the gut function is impaired). The biggest thing I would suggest for you, it would be the Great Plains OAT urine test. They have a cheaper version that only tests for yeast metabolites. Pfeiffer will order this for you if you push them a bit, they have for others. In my links thread, I posted a compelling article that Chemar found on a case study on yeast and TS. 4. Are you using manganese in the Pfeiffer supplement (their Primer contains it.) The doctors there don't seem to agree on whether this is too much for kids with tic syndromes. It can be an aggravator. We only do 1 mg a day vs their 7.5 mg. 5. What are you doing for the low Glutathione? Oral glutathione does not usually get absorbed and it can aggravate yeast as it supposedly can break down into cysteine, known to feed yeast. This will be key to long term healing. Glutathione lotion is now standard protocol in getting rid of metals. Oral glutathione did nothing for us for a year of it. 6. What supplements exactly were you giving? I love Pfeiffer but believe they WAY overdo it with B6/P5P for what many kids need sometimes. I am sure it varies with the doctor...What were the pyroluria levels? How much B6/P5P do they recommend? My doctor says B6 feeds yeast, and even Pfeiffer say B6 can make some kids hyper, which to me means tics can be aggravated. (And yes, if the supplements were helping with pyroluria, going off can make things worse. 7. Your comments on the eye contact--does it still exist? I ask because on the enzymes board I mention, the enzymes really seem to help with that. If you are no longer doing diet modification, I strongly recommend trying them for 3 weeks. Houston Nutriceuticals AFP Peptizade and Zyne Prime for overall absorption and no-Fenol for use with any antifungal. You need to do one at a time though, for a couple of weeks to ensure no reactions. 8. For the fatigue and depression, I would consider either an amino test test (Great Plains urine, $200) or an Adrenal Stress test (Diagnos-techs saliva $99). Caz posted a site once, and through it I read that people can mistake adrenal exhaustion for depression, and supplements for adrenal exhaustion and more sleep can really help. While you wait for testing, or if you choose not to test, I suggest trying to get your son to bed an hour or two earlier and see if it makes a difference. Even anemia can create the exhaustion, and Pfeiffer's standard test doesn't include this. 9. Edited: I just saw Chemar's Dr. Weil post and it reminded me about probiotics, good point. My top 4: -check out the B6 levels -check out glutathione lotion vs oral if you are not already doing it -check out yeast. (and a probiotic) -check out adrenal exhaustion Hope things get better. And yes illness can be a factor, but it sounds like there were issues before the illness also... God bless, I know how hard this can be. Claire

Carolyn, I don't think you were posting on Braintalk when TSNW was an active member. Well, the poster here named "Lanie" could be her twin. TSNW has her own website and never missed a chance to post to it, and I see that 'Lanie' just did that right now. TSNW/Lanie, is/are extremely against any alternative methods for tics or TS. TSNW was constantly arguing with people such as myself (TV/computer as trigger), FJ (pyroluria), Ronnas (PANDAS) and others who tried supplements and criticizing us for doing alternative approaches because of either the psychological or emotional damage we absolutely must be doing to our children. Her view is that drugs are the only safe way to deal with tics, which will likely seem ironic to many posters here, even though some of the parents do choose to use them. TSNW almost destroyed the Braintalk TS forum with her criticisms and taking things we said out of context and destroying them, and making parents feel guilty for wanting to help their children feel better. The board turned into a battlefield for a time. I left and might have quit posting altogether had it not been for Latitudes and Chemar being so welcoming to me. I have no issue with TSNW/Lanie's right to believe what she/they believe, I respect that 100%. However, I take strong issue with their/her implicit and explicit and most importantly, her disrespectful criticisms of the parents and individuals engaging in alternative treatments. "Lanie's" first couple of posts entering this board basically cleverly found a way to insult those of us trying these methods, and my stance is the same regardless of who she is: She is already of a certain mind, we can't change that. My best advice is not to let her try to do to Latitudes what TSNW did to Braintalk. People here know me very well by now. It may be hard for you to understand this post if you weren't on Braintalk during that time period, as Lanie's first couple of posts here only hint at how disruptive this can get over time. But I feel like Kim's neurologist just joined the board--not just with a differing view, but disdainful of anyone who disagrees, and just want you (Carolyn) and others to know that you don't have to put in the energy here trying to defend your approaches and questions. As a group as a whole we 'accept' our questions and the gift of emotional and physical health we are trying to give our children. Don't feel that her questioning you means that anyone else here does. Having said this, as Chemar said, you did a great job of explaining your views. I think I have told you that I am especially excited to hear of your progress, both for you and for the hope it will give to adults who feel that there is no longer a window to heal themselves. We see tics as a sign of possible health issues, and our focus is on healing. What a blessing for some of us: Alison with her happier, more focused child, Chemar with her emotionally strong son, Marie with her happier household, Dara, with her happier household, Marina with her son's continuing success, etc... and the parents here, who carry far less weight on their shoulders from worry as we watch our children heal. What remarkable results we have seen and will continue to see, and our gift in return will someday be to plant the seed for those mainstream studies that will allow more children to benefit. Thank goodness for alternative doctors and for this board and its dedicated families. And for Sheila for putting this together and trying to get her book out. Claire ps Back to not posting, I admit, that "Lanie's" arrival brought me out--for concern for the board. I can only hope that my concerns are unnecessary and that the implied criticisms don't escalate.

------------------------------ Kmatt, First, that is GREAT news about your son. You have gotten great input from Alison, Chemar and Andy. 3 main reactions I have: 1) The food allergy labs say that avoidance for a time can actually stop the immune reaction. My son can now have all the foods that he previously avoided for neurological reasons. As Chemar said, reducing the yeast is known to heal the stomach lining and thus reduce any food sensitivities. Alison's bucket theory is right on target too--If you will look at Marina's post, by eliminating a number of things for a time, her son's system seemed to settle and then he could tolerate much more. edited: The point I was making here is that your child may just be less sensitive now, based on what you have already done--this is good! 2) Your child does seem to have a history of tics coming and disappearing. So this makes your situation more challenging than most here, whose tics seemed to be pretty regular until they helped their immune system. Given the high antimony, I think your son may continue to have a tendency, since this implies low antioxidants. As for supplements, if you replenished his levels, it may take time for deficiencies to reoccur. On the other hand, if you cured his malabsorption issues by curing the yeast, then there may no longer be need for supplementation. The most important thing is that should the tics return, you can at least see whether these still help. 3) I too balance restricting foods and supplements versus having a happy child, and err on the side of a happy child (though ironically for some children, eating sensitive foods makes them less happy due to the reaction to them). This seems to be important to your child where you need to trust your judgment that it is fine to just reintroduce now. The labs say that every other day exposure reduces the risk of new sensitivities. If you can do this by just vary meal selections, then all the better. I found from my own experience (my child wasn't ticcing, just fidgety), that the foods absolutely eliminated the fidgetiness--he noticed it also. But clearly the fidgetiness in itself isn't a big deal, it is only if you are concerned that it indicated his system is under stress. If weight is an issue, then I would suggest that at this point, given his attitude and the lack of motivation, you might get Houston Nutriceutical chewable AFP Peptizade and Zyne Prime. It should increase his absorption of vital nutrients to help his weight, while reducing reactions due to food intolerances. This might be the way to keep your son happy without the restrictions. From the enyzme study published on the yahoo autism site http://www.enzymestuff.com/rtsevenmonthreport.htm#1 you should see a difference within 3 weeks. I personally take the chewables, and like them, though my son didn't--I think the aftertaste is minor, and just start eating right away so I never even taste it now anyway. Good luck, and I hope things continue to go so well for you! Claire

Hi, Newcomers get so overwhelmed. Here are some threads that can help. Since I won't be posting for a bit, I thought this might be a nice thing to do for newcomers. I hope others will post other threads on here that I missed (e.g. PANDAS, to investigate for sudden onset of tics/OCD). Claire **1/31/06 I am editing this thread to include a fundamental resource: Sheila Rogers' new book where she compiles expert (including parents!) input on non-pharmaceutical treatments that can substantially alleviate tic disorders. This should save a lot of research time!** http://www.latitudes.org/book.html List of alternative doctors---really, most of us end up with alternative doctors in the end... http://www.latitudes.org/forums/index.php?...p?showtopic=565 My child has tics, how can I help him? Explains some of the underlying immune issues that may cause tics and ways to think about getting started http://www.latitudes.org/forums/index.php?...p?showtopic=689 Controlling yeast overgrowth helping tics/OCD http://www.latitudes.org/forums/index.php?...p?showtopic=565 Lists of tests to ID immune issues http://www.latitudes.org/forums/index.php?...p?showtopic=755 Definitions: transient tics vs chronic tics vs tourettes http://www.latitudes.org/forums/index.php?...p?showtopic=622 TV/Computer/gameboy impact on tics (survey thread) http://www.latitudes.org/forums/index.php?...p?showtopic=852 Eliminating certain foods impact on tics (survey thread) http://www.latitudes.org/forums/index.php?...p?showtopic=794 Glutathione/Metals/Yeast/Pyroluria/zinc (survey thread of common underlying issues http://www.latitudes.org/forums/index.php?...?showtopic=1166 Eliminating artificial ingredients impact on tics (survey thread) http://www.latitudes.org/forums/index.php?...p?showtopic=795 Chemar's treatments that helped her son (a success story) http://www.latitudes.org/forums/index.php?...p?showtopic=687 Recommendations for Sheila Rogers consulting. For $90/hour, she can guide you through this, and come summer, finally she will have a book on this topic. http://www.latitudes.org/forums/index.php?...?showtopic=1179 One week to fewer tics--specific ideas for newcomers to try http://www.latitudes.org/forums/index.php?...&st=0#entry5005