Claire

Thanks a million everyone... This is what I found at the www.squirrels-nest.com ssite about the history of the site--get out your handkerchiefs.... Claire The History Of The Kemble Family "In 1977, when my oldest son, Jason was 2 ½, I learned he was sensitive to artificial colors and flavors. These affected the way he felt about himself and the way he treated others. That year for Christmas we received a book by Dr. Benjamin Feingold. Dr. Feingold’s research shows that many people have sensitivities to artificial flavors, fragrances, colors, and some preservatives. It helped to know my son was not unique with this situation. Parent’s whose children have been diagnosed with ADHD, ADD, autism, learning disabilities, and allergies were looking for a natural alternative to medication. The Feingold® program seems to be the answer. To provide Jason with candy, I learned the art of candy making from Mammy, my Pennsylvania Dutch mother-in-law. Soon I learned from sharing these sweets with others that people preferred the taste of real butter and pure vanilla. In 1980, I made this candy available through The Squirrel’s Nest. ... In 1990, I decided to offer my products by mail to Feingold members. The same month, Jason was diagnosed with a rare form of cancer called rhabdomyosarcoma. Jason felt very strongly about Feingold and the importance of a natural diet. He didn’t want his illness to change my decision. Jason died one month before his 16th birthday in 1991. By helping thousands of children, I realized that it was helping me to fill some of the huge void left in my life by his passing. When we go through something as devastating as the loss of a child we can’t possibly imagine that anything good could ever result from it. But as time heals God puts opportunities in front of us that give us the chance to help others by using the knowledge we have gained or just the compassion to understand. Like any other experience in life, most people wouldn’t or couldn’t understand unless they have been there. For me, the motivation to keep going continues, knowing that families like yours are counting on me...." -----------------------

efgh, You are absolutely right, a genetic connection is not required for a TS dx. It is just in the past they said it was 'rare' for TS to occur without a family history, and suddenly it seems that all these kids are getting it. This leads me to think other factors (e.g. mercury, whatever) are a factor--just as with autism. Plus the TS % is 1% or so, while other tic syndromes are 20% which leaves lots of room for errors in judgement. Certainly, I would say that most of our kids have a predisposition toward tic syndromes (e.g. chronic tic syndrome or transient tics). However with a TS diagnosis, with the mainstream neurologists, there is more of a resigned "they will tic and you have no control unless you want to drug your child". This is what I think Heather and I rebel against. Not that children still have some tics but that thus people think that they can't help it. I suspect that if you and Heather hadn't intervened, you would likely have crossed that year mark and IF you had bothered to go to a neurologist, your kids might have gotten that label. Because you are the type of parents you are, your children have a different path and will lead a much more comfortable life. Your posting here should document to others that this is a gift they can give their children: the gift of exploring alternative methods. The success rate here, though anectodal, has been so high for those parents who truly committed to the process, that it cries out for others to pursue this. As long as the parents manage the emotional aspects of unconditional acceptance of the child and don't ask them to try to stop ticcing (!!), wouldn't you bet that well over half will see some improvement? Certainly the board's success with seeing substantial improvement with kids is over 75% for those who are dilgent. What I don't know is if, like autism, there is an age factor--with autism, the longer you wait the lower the success rate. To me, this is the biggest DANGER of a TS diagnosis. If early intervention is most likely to achieve the biggest results, precious YEARS can be lost trying to just focus energies on accommodations and acceptance vs looking for solutions. Finally, and even more challenging, there isn't one formula, but inherently some trial and error. e.g. even for food sensitivities, there are different foods that many of us worry about. It is all about intervention. The biggest advantage I see for the 'label' is understanding from the school system. But certainly even telling them it is a tic syndrome you are working to heal would serve the same purpose. Claire

Thanks a million Caz, You are a fountain of information--I must get that book. Ah, that DMAE. That is one of the supplements that is good or bad depending on whether you are over or undermethylated... Claire

Adrenal exhaustion came up on the on-line test Caz posted as the most likely issue for my son. They said there are tests for it (I will ask our doctor). Have you heard of this? I can tell from the name a little, but I would appreciate input if anyone has experience here. thanks, Claire

Ok, I know almost all of the regulars avoid artificial ingredients. So I am looking for creative ideas for Halloween. What is a reasonable'cheat'? What do you all plan to do? Claire

Jennifer, I didn't know (or remember this about your son). Hmmm. Well when I confirmed with Pfeiffer today for our appointment next week, they asked: What is the primary reason for the appointment? I said: "My primary reason is for the MT promotion so that that my son can have wheat and milk again without issues." [by the way, my second reason would be more stamina. I think this immune system suppression impacts his stamina.] With LCD screens, he can basically have unlimited screen accesss these days--(He had 4 hours worth today as a sick day). The lifestyle diet issue is not going to be livable for him over the long term. Claire

Welcome Glenn, At the risk of being disruptive (and I am not a doctor), please be advised that your child may not have Tourette's, especially since no one else in your family does. The neurologists typically diagnose based on motor and vocal tics for more than 1 year. However, some of the poster's children hear had those symptoms and were reversed (e.g no more vocal tics, minor or no motor tics) by treating other health issues. e.g. excess mercury/metals, yeast, food sensitivities, vitamin deficiencies, sensitivity to computer and TV screens...) I suggest you read this board a lot--for knowledge as well as inspiration and make an appointment with a doctor from the list at the top of the forum, who will run tests on your child. http://www.latitudes.org/forums/index.php?...st=0entry3404 Our success rate for substantial improvement in children is phenomenal. The younger the better, in my opinion--easier to form healthy habits. Even if it is Tourettes, you should still see major improvement. Some of the parents here have kids with TS--the treatment is similar. Truly, taking this steps has an excellent chance of changing your child's life. Claire

Nancy, I just sent you a PM. I have heard the same thing about the hair tests. As for Enterolab--to me it was worth the $99 to not remove gluten unless he tested positive. It is a highly sensitive test. Claire

Nancy/Jennifer Hi Nancy, I checked and my son's sublingual B-12 includes the methylcobalamin (sp) in it, which he takes on alternate days. So really they are fundamentally on the same program. http://www.naturalhealthconsult.com/Monogr...lcobalamin.html "Methylcobalamin donates methyl groups to the myelin sheath that insulates nerve fibers and regenerates damaged neurons. In a B12 deficiency, toxic fatty acids destroy the myelin sheath but high enough doses of B12 can repair it. " By the way, on the gluten-free board, they posted that 25% of those with gluten sensitivities had a B12 deficiency. Since I don't know about under/over methylation (from Caz' post, sounds more like he is undermethylated...?), I only do the same folate in the B complex--actually ony 200 mcg/day since he takes one cap (=1/2 dose). He used to have a folate deficiency, don't know if that makes him more likely to be overmethylated (it is so confusing?) which is why I want the histamine test. So we are staying away from SAMe, inositol and the others that are questionable depending on histamine level, and doing less of the folate/B12 than I might otherwise do. Jennifer, good luck with your appointment! Claire

Caz, I don't know how I missed that link--it is awesome!! Thanks!! Others here--great test there, and info on causes of various conditions and supplements recommended Mine showed 'no major imbalances'. Of course, if I had taken this test a few years back...it would have been different. My highest things were Heavy Metal Toxicity (which I definitely have), and High Homocysteine (which I suspect, based on my own reading of symptoms). I really want both my son and I to have the homocysteine and histamine tests done. Claire

Caz, This is great stuff! I would love to hear the over methylated summary too--for contrast. Please do post it! I know that they don't ever discuss tics--someday our stats will be tracked also--our kids have so many of the same underlying conditions. I know about the basophil test (Direct health care does it). I thought it was step 1) histamine test, step 2 as needed for confirmation basophil test. I think Nancy E said Pfeiffer did the histamine test. I need to ask Pfeiffer about manganese. They recommend it with the zinc (too litte zinc can cause depression, too much zinc can cause depression, so the manganese is needed), but then they say that manganese isn't good for people with Tourettes! I don't know if that applies to tic syndromes. Just like Omega 3's are desirable, but for some with pyroluria it is actually bad. So many factors to balance, it is such a challenge. I like Pfeiffer because they record data on 1000's of patients and try hard to be so organized in creating subcategories. Though their site is a maze.... Claire ps Please do post the other info. I thought that 'anxious depression' was over methylated, while normal depression was undermethylated. I want to have this test done for myself too.

Nancy, My son takes sublingual B12, is this different from sublingual Methyl B12? (I have read about that on the Pfeiffer site. I know, it is tough to reconcile their dos and don'ts for under/over methylated. I will bring it up at our visit. I should thank you for posting a bit ago re the B complex. I was giving individual B vitamins and realized that I could save pills that way--though man Twinlabs is a big pill! Which brand do you use? My son is taking all the vitamins that yours is, plus more to get rid of the mercury. Which bread mix did you try in the bread maker? We did Gluten-free pantry sandwich mix and my son liked it a lot. Is this what you tried? However, we spent a few weeks without bread first so he didn't have a direct taste comparison. Now he eats Food for Life Brown Rice Bread--I personally don't like it though. I agree with you in general on the pre-made breads, what a joke. We used the bread mix above for pizza dough and cinnamon rolls. The cinnamon rolls (though sugar isn't great) might ease them into the taste. And Pamela's pancake mix is as good as any wheat pancakes we have had. EnerG has gluten-free pretzels too. Do you do no milk? Honestly, if you could just go one week gluten/casein free, I think you might see a big difference--or know that it may not make a difference. The easiest path is to run the www.enterolab.com test for gluten/casein. (no doctor's signature needed). It is a VERY sensitive test--if they pass it, I doubt they would have any issues with those foods. Claire

Susan, The symptoms are very overlapping, I agree. It is very confusing to do it by symptoms! Re the histamine test, I think that Direct health care only does the pyroluria test. They referred me to http://www.labcorp.com/ for the histamine test, but it needs a doctor's signature. I am going through Pfeiffer next week. Still the pyroluria test alone is a great start. So often these things are comorbid, which complicates things. That's why I like the histamine test. Claire

Belinda, What brought on this question? Is your child getting asthma attacks from cat hair or dog dander? I have many friends with terrible allergies to their pets and they would never part with their pet. In addition to Chemar's commetns, I would also think that you could handle allergies by: 1) not having the animal sleep in your child's room 2) a hepa filter 3) frequent vacuuming, including the couch. My friends give their dog his own leather chair--but they keep him off the couch. Your child's emotional health and happiness is critical. You must follow your heart here. I would imagine that a child losing a pet would be pretty tramatic. Of course, you don't say if they have some debilitating allergic reaction and your doctor said it was critical for your child's health to find the pet a new home, so I am assuming this is not the case. Claire

NEEDS vitamins is cheap and carries most of the highest quality brands. I didn't check on the mag taurate though, but I would bet that they do. (800) 634-1380 (US, don't know Canada) Don't know their shipping, but I ordered a bunch at once and shipping was free. They were 25% lower than retail prices I paid. Claire

I have researched the Pfeiffer clinic site on methylate (a histamine test is done to determine this). I have commented for some time that certain supplements are good or bad depending on this diagnostic. The site is fragmented, so I took excerpts and combined them. What it shows is that the same supplements that help one category, actually hurt another. So please be careful! Claire SUMMARY of SUPPLEMENTS 1. UNDERMETHYLATED, high histamines GOOD: methionine, SAMe, Calcium, Magnesium, B-6, Inositol, TMG, zinc. BAD: Folic Acid, B-12, Choline, DMAE, copper 2. OVERMETHYLATED, low histamines GOOD: Folic Acid, B-12, DMAE, B-3 BAD: methionine, SAMe, Inositol Notes compiled from all over his site: http://www.alternativementalhealth.com/art...icles/walsh.htm UNDER METHYLATED = HIGH HISTAMINES, elevated basophils histamine ( > 70) Conditions associated with undermethylation: Anorexia, Bulemia, shopping/gambling disorders, depression, schizo-affective disorder, delusions, oppositional-defiant disorder, OCD. most exhibit seasonal allergies, perfectionism, strong wills, slenderness, OCD tendencies, high libido, etc. hives more undermethylated supplements: methionine and/or SAM are wonderful for high-histamine (undermethylated) persons. (undermethylated) persons thrive on methionine, SAMe, Ca and Mg, but get much worse if they take folates & B-12 which can increase methyl trapping. Generally, OCD patients respond nicely to methonine, SAMe, calcium, magnesium, B-6, Inositol, TMG, and zinc. more than 40% of all clinically depressed men are undermethylated and benefit from therapies which enhance methylation. High bloodhistamine indicates undermethylation, low serotonin levels Most OCD patients (both obsessive thoughts AND compulsive actions) exhibit undermethylation and associated low levels of serotonin, dopamine, and norepinephrine. Choline is anti-dopaminergic and often makes OCD patients worse. Most OCD patients get worse if given supplements of DMAE, choline, copper, or folic acid. Inositol is usually very helpful for UNDERMETHYLATED, HIGH HISTAMINE patients. This includes nearly every OCD patient we have seen. Inositol usually provides calming throughout the day and ability to settle down to sleep at night, for these patients. Some practitioners like to tinker with the SAM cycle to promote conversion of homocysteine to methionine, but this can deplete the cystathione pathway and result in deficiencies of glutathione, cysteine, etc. Some persons have a genetic enzyme weakness which can disrupt the SAM cycle Undermethylated adults typically require 2,000 - 3,000 mg/day of methionine for several months to see good results. Also, augmenting nutrients such as calcium, magnesium, B-6, and zinc are essential. Personally, I believe the use of SAMe is the quickest way to help an undermethylated, high-histamine person. OVER METHYLATED = LOW HISTAMINES low histamine (< 40) Overmethylated persons generally exhibit anxiety, absence of seasonal allergies, presence of food/chemical sensitivities, dry eyes, low perspiration, artistic/music interests/abilities, intolerance to Prozac and other SSRI's, etc. Conditions associated with overmethylation: Anxiety/Panic disorders, anxious depression, hyperactivity, learning disabilities, low motivation, "space cadet" syndrome, paranoid schizophrenia, hallucinations. (Oct 3, 2003) supplements: ?Over methylated do well on B-12 and folates?? ?? methionine and/or SAMe usually harm low-histamine (overmethylated persons) Many anxious children are overmethylated and thrive on DMAE which passes the blood-brain barrier and enhances acetylcholine (which suppresses dopamine). Since DMAE tends to lower Dopamine, Norepinephrine, and Noradrenaline..... anxiety may be lessened and expressive language improved. Of course, DMAE is effective only for children who have a genetic tendency for elevated levels of these three neurotransmitters. DMAE is usually indicated for children who are "space cadets" who have high anxiety, little motivation for learning, and poor organization. DMG is usually indicated for intense children who are strong willed, competitive, and exhibit obsessive/compulsive tendencies. (Oct 1, 2003) On the other hand, OVERMETHYLATED patients usually derive little or no benefit from Inositol, and may experience very nasty side effects from it. another 15% or so are overmethylated and need to head for the other goal line...... namely avoidance of methylating supplements and use of folate therapy. histamine deficiency. After studying the metabolism of more than 20,000 schizophrenics he learned that this "low histamine" syndrome was common in anxiety, panic disorders, and classical paranoid schizophrenia. His enormous biochemistry database revealed that most histapenics suffered from (1) copper overload and (2) deficiency of folic acid and/or B-12. More importantly, he found that aggressive therapy using folic acid, B-12, and B-3 (note: niacin) usually produced dramatic improvements in these persons. http://www.personalhealthzone.com/vitamins...de_effects.html Use caution if you have depression or bipolar disorder and are taking or considering taking inositol. There is a possibility that manic episodes may occur.

Ah, that power of suggestion! Sorry to hear that. Even so, you may have elevated metals or yeast or something that can at least help. Truly, the percentage on this board that have improved is phenomenal. However, for me to be most accurate I need to comment that they do this healing with their children--I have no idea how 'hard-wired' it is by the time we are adults. I still believe it has to make at least some difference. The solutions here go well beyond what I suspect you have tried--truly there are MD's who run a battery of tests to see if you have similar issues. If you have insurance, it isn't too bad. The doctor list is at the top of this forum--don't be put off by the 'autism' descriptions--the immune issues seem to be common between autism and tics. (and OCD and adhd for that matter). I hope you will do this for yourself. Again, if you have insurance, I can't see the harm. No drugs, no side effects. If you don't have any of the issues they test for (and I am betting you will), then you are no worse off than now. Claire

Bumped for newcomers, and hopefully for Evangelia to give more feedback on her recent success since she last posted. She did both the elimination diet and eliminated TV and saw substantial improvement. Claire

We use Multi-pure for the kitchen, sorry I don't know if they make an all-house filter. The one we have does reverse osmosis and carbon, which is clearly overkill for a house.

Evangelia, This is absolutely marvelous to hear, I am soooo happy for your good start. Would you mind giving more details for other newcomers to learn from? e.g. What elimination diet did you end up doing? I know from your first post that you had started eliminating some things and his tics got worse initially. Did they just improve from there, or did you end up eliminating more foods as you were considering, or is this when you added eliminating TV? I am bumping up the food sensitivity thread, it would be very helpful to many if you could post the details there. The good news i Great link on leaky gut. I have thought I have had this for some time now (due to high yeast) and have started taking glutamine to help heal it. (Of course I am treating the yeast and elminating foods I am sensitive to also). But your link is the best explanation that I have seen for it. I have heard that wheat is a very large molecule by the way. It makes me wonder why they say the large molecules get through. I have heard this before, so I am not debating it, but you would think that if the intestinal wall was more permeable that the small molecules would squeeze through first... Claire

Hi Belinda, Where did you get it? I have never heard of it before you mentioned it. No way my middle school son would wear a necklace of any kind, but I would like to read about it and who knows, maybe check it out for myself, since I am on the computer all day long. Claire

Caz, I read the same thing about glutamine and tics, and glutamine and the gut. However, I have seen more scientific input on glutamine and the gut, but only individuals discussing the tic aspect of glutamine turning into glutamate. Our DAN doctor doesn't think it is an issue. Nonetheless, we just started the glutamine and I will keep an eye out. Claire

Susan Whoops I forgot to add: Normal amounts of B6 and zinc won't do it if he has pyroluria--it leaches the B6 and zinc from the body, causing potentially add and other issues. The starting dose is more like 200 mg B6 and 50 mg P5P and 50 mg zinc. I cut my son back to 125 mg B6 and 25 mg zinc after a few weeks and his recent reading was normal--yes! Also, it is a urine test done at home and mailed in--no appointments or lab visits. I should note that my son didn't have ADD. However he has actually commented that his concentration is better this year--we treated him over the summer. He is incredibly self-observant--and he never knew I was treating him for anything to do with concentration, so no placebo effect here. Honestly, I can't see harm in running the test if you know he has ADD. I don't like trying supplements for something unless the test is positive. Finally, other conditions of pyroluria can be high anxiety/inability to handle stress and depression. They often do poorly in school for this reason. The remarkable thing is that it is almost always completely treatable with just supplements. I HIGHLY recommend he take it. Claire ps: another good diagnostic: Does he remember a dream almost every night? One of the indicators of pyroluria, but if he does remember them, it doesn't mean he doesn't have it. One B6 guideline is to give enough until they remember nightly dreams.

Susan, http://www.pyroluriatesting.com/ You can call and order this yourself, as long as you give them the name of your doctor. They will fax the results to both of you. (Easier to explain later vs get the doctor to agree!). $40 for the test and $35 for overnight shipping. Claire

Good for you Susanna, I know with certainty that this makes a huge difference for us. The way I know for sure? We go to visit relative or stay at hotels on vacation, with carpeting and no filter. After a couple of days, we all feel in (me in my throat, my husband and son in their sinuses). That's why I actually caved in and bought a portable filter. When my son was ticcing, he actually had a reaction to my husband's carpeted car--not sure if it was the synthetic fibers/chemicals in it or the dustmites. Mine has leather seats due to my allergies--I am really that sensitive. My husband's next car will be leather seats! Once you get the filter, vacuum their carpet, wash all the bedding, I bet you will start to see improvement difference within 2-3 days. (With my son it was overnight). Again, if you vacuum the carpet in their room nightly, it helps. I don't do need to vacuum as often with hardwood floors. I mention the furniture because I read that cloth furniture has more dust mites than anywhere in the house. (Plus a place for animal dander at friend's home, which I am highly allergic too. Of course, the dustmite protection is for people sensitive to dust mites. The HEPA filter covers virtually all the antigens of course. Claire