kim

ad_ccl, Both of my boys have had the red chapped lip thing repeatedly over the years. The mouth stretching only happened with my youngest son, but the head shaking always seemed to get worse for both when this was happening. We go NO WHERE without an arsenal of lip stuff when that starts, it's only youngest son now and he knows enough not to let it get out of hand. He even had the dry lip problem once this summer, when the humidity was really high. I wonder if the dry burning lips are more of a dehydration type of thing that our kids may be more prone to for some reason? Maybe allergies are flairing during this time, and they do more mouth breathing? Or it could be just what you said, the irritation alone brings on the tic like behavior. I just found it curious that other tics seemed to intensify at the same time. Kim

Jason, I hated to see that sad face! It certainly wasn't that your question was not one that I haven't wondered about too. Last winter my oldest son had really terrible itching all over: scalp, arms, back etc. mostly at night. His tics were pretty bad at that time. He was also feeling very "out of sorts" having a really hard time with school work, short tempered, miserable. The Dr. said it was winter dry skin, or it could even be something in the vitamins I was giving him (we had just started Bonnie Grimaldi's vitamin program -he was against this) and blew it off. I reminded him that this started before the vitamins. I gave him benedryl and started running an air cleaner in his room, finally, I took him to an allergist and he had some pretty heavy duty reactions to 2 types of dust mites, mold, trees, grasses, cat-which we have never owned, and just about everything else you can test positive to. He was given 3 allergy meds, but I have only given him 1, Zyrtec. Don't know if the tics would have been worse this summer without the Zyrtec or not. He had one short flair of head shaking. I did notice he would seem stuffed up and had a few bloody noses when the cottonwood was flying, but no tics like we have seen in previous summers. I'm hoping the vitamins, fish oil and digestive enzymes are strengthening his immune system and we will be able to discontinue the zyrtec as time goes on. We'll have to see what happens this winter. New Dr. for the boys told me to get zylitol in the form of a nose spray for both boys. He said Nasonex, which was the 1 out of 3 meds that had been prescribed for youngest son that I chose to give, was a steroid and would irritate any problems that may be going on in the digestive system. I hadn't thought of that, nor had I ever read of zylitol being used for nasal congestion/allergies. He feels the weakened immune system, tics, and allergies are all connected. So I think there probably is a pretty strong possibility that allergy flairs, illnesses etc. can trigger tics. As Chemar said, hope you decide to keep posting. As the kids are back to school, I'm sure others will have more time to respond. Kim

ad ccl, Thanks for the reply, complete with phone #. Is a Dr.s signature required? Kim

ad ccl, Could you tell me what lab you used for your son's test? How long did it take to receive once you ordered? I'm thinking, if the boys have to be off of their "stuff" for a few days for the Great Smokies test, it is kind of silly not to do this one too. FJ encourages everyone to have this test done at the start, and I guess after reading what's happeneing with your son, it's something I should have done a long time ago. Any info would be appreciated. Kim

bgirl, There are so many threads here with so much information. Just read as much as you can. If you look for Claire's post ( just click on her name and it will give you an " all messages by this poster" option) I'm sure you will find those and many others very useful . I think I just saw one of her threads titled Getting Started, not too far back on the topic page, if you don't see it, go to the numbers at the bottom left and click on the 2,3, etc. to search the back pages. Also, if you go back to the topic page, Chemar has a thread called Treatments that have helped my son. I too used a prescription medication, clonidine for my two sons. As you indicated, we saw a little improvement in the beginning, but it was pretty short lived. I am grateful to have found this board and hope you find as much help here as I have. Kim

Sarah, 75% is great! Could you tell me what zymex thymex is? Hate to sound like a broken record, but since we had discussed yeast and your son had symptoms, I'm wondering if that was ever tested for, or treated? So glad you checked in. Hope your Mom is well. Kim

Luvmylilrainman, So glad your son is doing better with the use of his vits. again. I'm wondering if he has been treated for yeast, or if you use probiotics? My boys new Dr. strongly feels that these problems arise in the digestive tract, and if you can fix the gut, you can reduce the amount of supps. This makes perfect sense, but I have been under the impression that you need to have the antioxidant levels raised and things balanced to support the body during treatment of yeast/bacteria issues. I want to keep my boys healthy and tic free while he is working on their digestive tract. He also believes getting to the bottom of metal issues is essential. I told him I wanted to supplement deficiencies and see if any metal issues would resolve themselves, especially since we have seen such good results with minimal supplements. We kind of hit a happy medium, but I still want other tests (Spectracell especially). I was just afraid to be too assertive, since I have been beaten up pretty badly by the reg. Drs. Part of me just wants to put all of this in a Dr. hands, and the other part can't. I've come too far to just "hand them over" again especially if I disagree with something. Sorry, I got side tracked. I hope you can find a good DAN! Dr. close to home. It sounds as if you have a good handle on how to help your son. He is lucky to have you. Please keep us posted on his progress and I know it may be hard with the other supplements, but I'm sure all would like to hear what you see with the use of L Carnosine. Kim

Spring, Youngest had two episodes of stomach pain, and both complained of stomach discomfort a time or two. I have read several posts of kids getting hyper, whinny, aggressive, complain of stomach discomfort etc. when starting or increasing. It seems Peptizyde and No Fenol cause more of this than Zymeprime. Usually, any adverse effects resolve within 3 weeks. If you go low and slow, especially with a sensitive child, or cut back when seeing adverse effects, it should help. Sometimes kids can't tolerate certain foods even with enzymes, so it's kind of trail and error. Sometimes they only help with infractions if kids are gluten/caisen free or doing Feingold or SCD diets. If your child is taking any time released medication, it is recommended that you check with the enzyme manufacturer to see if it may make the medication break down too fast, and people with severe reactions to mold, are cautioned to not to use enzymes (both of my boys tested positive to mold, oldest quite strongly and he is tolerating enzymes fine). They may help the child to utilize the vits/supplements they currently take, thus enabling you to cut back in some cases. If there are any other things you think I can answer for you, just ask! Kim

Spring. Here is an excellent site to start getting fimiliar with digestive enzymes http://www.enzymestuff.com/ Also, these two books- Enzymes for Autism and Other Neurological Conditions: A Practical Guide Karen L. DeFelice Enzymes for Digestive Health and Nutritional Wealth: The Practical Guide to Digestive Enzymes Karen L. DeFelice I had read where enzymes could help with everything from food sensitivities to allergies, gut healing if damage was present and regulating insulin more effectively and many other things. I originally started looking at them because of my 8 yr. old who is such a limited eater and sugar craver. I felt pretty strongly that the gluten /caisen sensitivities was a good possibility with him, but when I tried to eliminate, I got uncomfortable pretty quicky because he was losing weight and just choosing not to eat. I had read some posts that said their child did the same thing. Some parents held out for 2 to 3 months, and their child still didn't add new foods. I knew I wasn't that strong, and my son's tics are not that bad, so the enzymes seemed like a good alternative to a restricted diet. I had also wondered if a caisen sensitivity was the cause of the bed wetting. When I eliminated dairy, he did have dry nights but then it it started again. We are pull up free for a couple of weeks now again. I still don't know if it's reduced fluid intake or enzymes or vit/supps. I originally only started using the enzymes with youngest son, but when oldest had the head shaking flair after months without, I started noticing how many carbs he really did eat, and wondered if he might benefit from them too. Was it a coincidence that the head shaking stopped so quickly, maybe...but I have to tell you, in the first week on the enzymes, this child power washed the house, cleaned both vehicles, inside and out, cleaned the garage, vacumed the pool and cleaned all filters without anyone even asking him to. He just seemed to feel good. I have read about the "happy child effect" with enzyme use, and I would have to say I have seen that. Don't get me wrong, it did not turn him into some storybook wonder child(although I have always thought of him that way anyway, tics, moody and all), he just seemed to feel well and so cooperative. Something I can positively say about the enzymes is they definitely helped both boys eliminate more frequently. We are using Houston Nutraceuticals ZymePrime and AFP Peptizyde. I have No Fenol but have not used any yet. I guess I was holding off for yeast testing, which new Dr. sent us home with the test kits for the Great Smokies Stool (I wanted Great Plains Oat) and the No Fenol can cause yeast die off, so I was waiting to get test completed before using that one, besides I introduced the other two so slowly, we would just be getting around to it now anyway. We have to stop enzymes and vit. for 3 days prior to doing the test. I hate to have to do that. New Dr. feels getting a good feel for how the digestive system is working is the first step and likes this test, but that's another story. Kim

ad ccl, I went to Braintalk to look for some of FJ's replies and saw that you had posted your question there too. I know there is alot of info. there, if you have the time to search for it. I thought from memory (which isn't all that reliable) that your son's # was quite high. I would feel the same way you do, relieved. I remember FJ saying that you are lucky if this disorder is the source of your problem, since the treatment is so effective. Way to go, in finding this out! I will be watching for the responses you get also, and I know you will let us know what changes you see with treatment. Kim

Sydsmom, I have to share this with you. There were a couple of posts regarding Krill today on the aut/enz. bd. One Mom was saying that Krill smells like rotten fish on a hot day. Apparently, if you freeze the capsules they don't smell quite as bad. She said she gave her little boy the frozen capsule and he bit it and the oil came out and he spit it on the hardwood floor, as she was trying to clean the floor, he was wiping his mouth on the funiture and pillows. She said her whole house smelled like rotten fish. Another Mom replied that the same thing had happened to her, in her kitchen and it still smelled like fish. If anyone uses these with smaller children, you may want to give the first one outside!! Kim Spring, I will post about enzymes tonight when I have a little more time.

Sydsmom, Oldest son started middle school last year and loved it, even though the first 1/2 of the year was rough, mostly at home, due to the tics and Ped. telling us that all of the night time itching was winter dry skin, although his skin did not appear dry at all. Finally when he had allergy testing, and he exploded with reactions and started zyrtec along with the other supplements, the 2nd 1/2 was sooooo much better. The statement about the tics being like old friends sounds beyond her years. Do our kids share a kind of maturity? Probably have to. The head strong part sounds fimiliar too. Firefliesway post was really interesting, and I can't wait to hear your results with Krill. If you get a chance, I would be love to hear your opinion of the use of the enzymes. Oldest had a mild head shaking flair which stopped the day we started the enzymes with him. Youngest biggest success so far is DRY NIGHTS. This is BIG for us, almost as big as losing wiggley cheeks/ears and shoulder shrugs. These tics are not 100% gone, but we're making great head way. Kim

Luvmylilrainman, If you go to the topic page, you will see toward the top of the page "Finding Medical help" Hopefully you can find a Dr. in your area. I actually got the name of the Pediatric DO that I recently took my sons to from Immuno Labs. They said he had a high rating, which I assumed meant that he ordered a lot of food sensitivity testing from them. After checking out the few DAN Drs. in our area, and looking at the wait time and cost, I decided to give this Dr. a try. He actually seemed to be very fimiliar with the DAN proticol. Here is a contact page for Immuno with their phone # listed also. http://www.%20immuno%20labs.com/ Maybe they could give you a referral too. Just one more thought, if you can get to the bottom of what has caused the tic, maybe you will see improvement in another area too. I have found the use of omega 3, a compounded vit that I order from this site http://www.bonniegr.com/Interview%20with%20Bonnie.htm a little extra zinc, and digestive enzymes (Zymeprime and AFP Peptizyde) from http://216.114.78.114/webcenter/sites/hni/ to be very effective for my boys. Also, more green vegtables and better diet, although we fell of that wagon today, pretty bad! SMORE POPTARTS and a chocolate cream pie. I just get so tired of handing out all the pills and saying no to all the goodies, so I did it up right today. We may be throwing a 2005 yeast fest in a couple of days. I will be queen yeast, as I ate more than the boys. Kim

Chemar, I am simply transferring information. You are the one who did the tough work going it alone to help your son as you did, and hanging around to help so many and giving so much of yourself. I don't know if you will ever really know how many you have helped. Sorry, I didn't post when this biochat was to take place. The 16th seemed a long way off, a few weeks ago. Mary Romaniec GFCF in 10 EASY weeks. A Streets-Smart Approach to Negotiating your Child's IEP. Her experiences with IVIG. Recently she completed an article on relationship challenges. MRomaniec@a... Her son is recovered from autism (article in Mothering magazine a year ago). *************************** Q: My daughter is starting IVIG next week. She has very high ASO titers. How did you determine that you needed IVIG for your son, and what benefits did you see? A: My son went to see Dr Gupta. My son's immune system was suppressed. But because my son's immune system was not suppressed enough, insurance would not pay. We went ahead and did the IVIG. Without this my son would not be recovered. We're so happy we did it. Q: How long did this take to recover? A: Saw progress after the first infusion. We saw jumps for 19 months that we did this. All major jumps. After a few months went from non- verbal to verbal. When he plateaued we stopped. It is expensive. My son was recovered by age 4. Q: can you please explain what IVIG is? A: IV immunoglobin – human blood. Comes from thousands of donors. You're taking antibodies from donors. It helps with autoimmune issues. Q: How long, and what did you see? A: We did the treatment (IVIG) for 19 months. We saw significant improvements every month. The school district saw remarkable changes. They'd never seen anything like this before. We were witnessing miracle events every day. Q: What is the test to determine if your child qualifies? A: There are a series of tests to be done by an immunologist. Dr Gupta is at UC Irvine in California. He did tests to tell where the immune system was struggling. He also did an antibody titer. My son was missing the antibody titer to polio even though he had the vaccine. Q: Is it blood? A: yes. We asked about the blood resources. We were comfortable Q: Do you know if IVIG works as well for kids that are older? My son is now 11. A: It does work, at what age I don't know. The best way to determine if appropriate, do the tests, find out if his immune system is severely suppressed. If it is, that's actually good news, because insurance might cover. For a child that age, could be $5000/treatment. Q: can you talk about types of carnitine vs carnitor? A: sorry, I'm not familiar Q: you consider your son cured from ivig, not diet? A: Actually, he's recovered, not cured. I'm always looking out to make sure he stays well. Without gf/cf we don't think IVIG would have worked as well. We're still on the diet. For us, all 3 things worked together, gf/cf, IVIG and behavior therapy. My son is very well trained to keep himself on the diet. Daniel is 6 years old now. Q: Is IVIG considered a "mainstream" therapy for immune suppression? In my wonderful home state of FL insurance companies are exempted from anything considered experimental-never mind for autism. A: yes, for immune suppression, this is the treatment. FL is one of those interesting states. If you have a physician ordering IVIG, they will be looked at closely. Dr Bradstreet and Kartzinel got nailed on that. Insurance would need to see immune-suppression, or something other then autism. Dr Bradstreet is a fan of IVIG…but now has to use it as a last resort. He has to show due diligence now. Q: We will be going thru the IEP process for the first time for my almost 3 yo son for preschool in the next couple of weeks... any advice? A: Yes, lots. There is a great book The Complete IEP Guide by Lauren Siegal www.tacanow.com has an IEP checklist that I wrote. I also wrote an article on this. Go in prepared, bring a tape recorder, notify them in writing about everything. Q: What is your view on soy products? A: Soy can cause erosion of the esophagus and large intestine. Many of our kids get OD'ed on soy because we put them on gf/cf. But it's a very common allergen. My son had to have an endoscopy because I OD'ed him on soy. Please use it very rarely, or not at all if you're child has a sensitivity. It's very common to have IgG allergy to soy, more common then not. Q: what do you think of electrodermal screening? A: Sorry, don't know about this Q: You are GFCF, what are your thoughts on SCD? A: I'm a big fan. I encourage folks to start with gf/cf though, it's easier to start with. The SCD has casein, and I think casein removal is important. (Rick N adds that casein is bad for MB12, interferes with methionine synthase pathway) Q: My daughter tested negative on hep B titers and tetanus titers. Did you mention that your son was negative for polio? A: If your daughter was immune suppressed on two or more tests, insurance will cover IVIG. Q: are you familiar with kefir and if so what are you thoughts on this as far as casein and - do you have experience with non-dairy kefirs A: I haven't heard of a non-dairy kefir, and I'm not a fan of casein. A little bit is not a good idea for our kiddos. If you need probiotics, rather then kefir go to acidophilus. Q: there is young green coconut kefir from body ecology diet A: I'm a fan of Body Ecology Diet. You have to determine if it's right for your particular child. Q: How can you determine if your child is having an intolerance to a food if your child's behavior is typically erratic anyway? My DAN doc wants me to remove soy/egg and reintroduce it to see if there is any rxn... A: Did your DAN dr not run an IgG? He should run a full IgG. This is the best way to find what your child is sensitive to. We had to remove 21 allergens for my son. Q: Can you recommend a bread mix that taste like "real" bread. We tried several (this was a couple of years ago) and they just tasted weird. If you know of something that will make good pancakes and biscuits that would be great. A: favorite bag mixes causeyourespecial.com Creationsbykristin.com Glutenfreepanty.com Q: 2 questions - We are starting the 3rd year of preschool and I've requested a full day program because he is progressing nicely. This will be a battle with our school which things "progressing means less is needed." So I'm trying to figure out if I should be satisfied with a full a.m. program and a unstructured p.m. play setting. A: If he hasn't achieved the goal, you don't dial back services. You as the parent need to lead the charge, and get the school to follow. We got a shadowed aide in a private preschool, with 5 hours speech, all paid for by the school district. I clearly demonstrated that the proposal for my son was not appropriate. I needed him to emulate normal children by kindergarten. Q: 2nd question - we are seeing better communication after b12 shots - but LOTS more frustration. HELP! It looks like terrible two's but I don't know how to help him since his communication skills progress so slowly! If anyone wants the article, go to tacanow.com Q: I'm really apprehensive to send my 3 year old to preschool because we are strictly following GFCF diet. Wherever there are young children, there are contra-band foods. I don't think an EA or teachers assistant would be able to police my child's grabby hands... any suggestions A: If your child is grabby, you need to get a shadow aide. Meet with the teacher at the beginning of school year, explain that a little bit of gluten or casein will turn your child into a demon. Make sure there is no regular playdough, the teacher should get gluten-free playdough. I've never had a problem getting teachers on board. Q: Can you take us through the 10 easy weeks to GFCF? It seems like we cannot get started because we are afraid our son won't eat anything. A: The 10 week calendar is on the tacanow.com website. Remove dairy for the first 2 weeks. Go slow with the rest of the diet. Stock up on ready to eat and package mixes at first. Third week, breakfast. Fourth week, tack on lunch. Fifth week, dinner. Etc. (see tacanow) There are usually 5 foods a child will eat because of the opiod high. When you remove these foods (gluten/casein), they'll over time get used to eating other foods, the craving will go away after a week or so. Q: does anyone know how to get a shadow aide? A: These are aides well-trained in autism, will not overwhelm the child, but is there to help. Q: what do you do for cheese? A: Almost all of them have casein, there is only one brand (Chreese) that is similar, but it has soy. We go without it. Q: What is the thing(s) in the diet that most effects tantruming A: There are a variety. Gluten and casein. Artificial colors, preservatives, phenolics, sugars. Yeast overgrowth. Q: What is it about french fries that kids-or at least my 8yo- go nuts about? (McDonalds) A: We use Cascadian farms and bake the fries. McDonalds is fried in soy oil. We eat McD's once in a while. Q: What are some GFCF toothpastes you recommend? I live in Canada... A: Toms of Maine non-fluoride, or Kirkmans non-fluoride ****************************************************** I want to tell you about another article I wrote. We all grieve at different levels. The article is coming out, I'd be happy to forward it when it comes out. In the meantime I'd like the share some tips in getting through this Autism diagnosis. You commiserate with friends, but there are various levels. 1) you're struck with fear, overwhelming, all-consuming. One or both of the spouses get stuck in that mode. 2) You're angry. You can also get stuck here. 3) Denial. Can get stuck here too. 4) Bargaining/guilt. If I do a little of this, the rest will go away. 5) Acceptance. This is something I need to deal with. What do I need to do to go forward. 6) Resolve to overcome. Create family normalacy; or overcome your child's health issue. If one spouse is stuck and another is at 6, that's where the conflict starts. You start to see real dissention in a family. I have some hints for how to get through these stages a little quicker. I mentored a friend. Dad wasn't getting the gf/cf thing, he fed the child the wrong foods, the child's behaviors were horrible and the mom had to deal with them. She wanted to make the dad's night miserable. Mary suggested giving dad a night he couldn't forget instead; then the next morning bring up the gf/cf thing and get him on board. That worked! Mary suggested that when the lady and her husband go away on vacation together, they again have a night to remember. Friday and Saturday…then Sunday morning bring up the biomedical stuff, and get him on board. That worked! From the other viewpoint, the husband trying to get the wife on board, give lots of TLC ***************************************** Q: Will my child ever be able to eat fruit with a serious yeast issue at present? A: Fruit is not a problem unless it's eaten in really large quantities. To help the yeast, control sugars, use antifungal, probiotic Q: My son also loves bananas. You were mentioning them in regards to the salicylates. Is there something about bananas that would not be good for him? BTW, what's a vacation! A: They're not really a salicylate. They do set off behaviors though. Like demonic laughing, that's usually caused by bananas. It's not that the bananas are not good for him…but might cause behaviors. Q: Did you use Benadryl and/or fever reducers immediately prior to each IVIG infusion? Any tips on how I can make the IVIG comfortable for her? What are signs of a bad reaction to the IVIG? A: One hour prior to IVIG, we got to the appointment. The nurse applied the EMLA cream. Then benadryl and motrin were both given. Then he was hydrated heavily. Hopefully the facility where you are going is well acclimated to dealing with children – tvs, video games, etc. With the benadryl your child will most likely sleep. Bad reaction – headache and nausea. That can be mitigated with benadryl and motrin for next 24 hours. Also a chicken pox type rash is a less common reaction. Q: I have two diff questions one would be have you ever met a couple where the father blames the mom A: yes, many couples, especially Asian and Hispanic families, the father blames the mom. Father thinks it's the mom's fault for not disciplining enough, or thinking about the behaviors too much, or whatever. If you can get your husband to go to the conferences, and be more involved, maybe that will work, but in many cases you can't get the husband on board. He's stuck between anger and denial. Q: How long is the IVIG infusion? I have heard it is something like 6 hours. How do you get a kid to stay put that long? A: 6 hours is about right. I never saw a child Q: Does the low dose naltrexone address some of the same immune issues as IVIG? A: Nothing is the same as IVIG, not even oral immunoglobulin. LDN won't do the same thing. Q: is IVIG permanent or is it a temporary thing that is done periodically - how many infusions typically. How do you know if your child qualifies for this treatment A: IVIG is temporary, in that it lasts 4-6 weeks before you need another infusion. You want to get to the point where the body can heal itself. It detoxes the body – heavy metals were coming out like crazy, because the body started doing what it was supposed to do. IVIG does exacerbate yeast – stay on antifungals and probiotics. How many depends on the child, we ended up with 19. Others have more, less. Depends on the child. You need to have an immunologist run tests to see if your child qualifies. Q: Will this test tell if the child has an immune deficiency? A: Yes, Dr Gupta is very careful about the patients he takes. He turns down many who he feels would not benefit. Again, it's very expensive, priced by the gram. Q: Any IVIG clinics in Canada - Ontario - Greater Toronto Area?? A: Canada is not real up on IVIG, because they have to pay for it. The folks I've talked to had to fly to the states for the infusions. Q: What about baygam as a "cheap" alternative to IVIG? A: Anything we do to improve the immune system is a good thought. I do try to caution parents that there is a difference between IVIG and any other treatment. It's up to each parent to decide what's best for their child. Q: Where will your article on relationship challenges be posted? A: As soon as it gets fully edited I'll let you know. Q: First, is yeast-free diet a must as long there is a gut-yeast issue? Next, how do you know that after some number of IVIG sessions, treatment is enough and can be ended? A: That was my number one question to Dr Gupta – your child will either plateau or regress. My child did plateau. At his 18th infusion, the pediatrician saw no more autism in my son. After that we did one more, then decided we were done. On yeast free diet, you're dealing with total dysbiosis of the gut, so clean the gut as much as possible, but don't go nutty about being totally sugar-free and carb-free, stay sane along the way. Q: Did your son have any gut issues? A: The gut issues were so bad. His poops (20 a day) were like barnyard animals in the way they looked and smelled. We went to Krigsman in NY, he diagnosed 2 autoimmune issues in his gut. We started IVIG because of all the gut issues, but they didn't clear up all the gut issues, he had to be on meds. Q: Did you use any chelation therapy prior to the IVIG? A: We didn't do chelation. It was on my list of things to do..but when we tested heavy metals, they were all gone. I give credit to the IVIG. Q: Do you know how the divorce rate of autistic children affects the kids? A: I've seen so much of that, a lot of families struggling. It can really complicate a child's recovery. I try to encourage parents to work it out. Q: Do you think IVIG is comparable to MB 12 treatment for detox/immune function? Which is better? A: They're different. Detoxing immune is totally different then MB- 12. They can be used in conjunction with eachother. You can also use antioxidants, like glutathione. Q: did your son have metals when tested before ivig? What is the approximate cost for a single IVIG session for approx 40lb kid? Could you explain the source of IG that is infused into the kid? A: He had both blood and hair tests, and was off the charts on quite a few metals. We had to address gut issues before chelation, and along the way went into IVIG instead of chelation. The IVIG is put through quite a purification process, it's donations of droplets of gamma globulin from thousands of donors. Q: every how often would one do ivig A: We did every 4 weeks, some go longer. Q: If you have a child that's a responder to MB-12, does that mean he's a responder to IVIG? A: He might benefit. He also might benefit from Tomatis sound therapy. We did that, and it helped my son's auditory processing delay. Q: AIT? A: yes, you need to choose which version of the sound therapy, AIT, Tomatis, etc. You need to decide which is best for your child. Q: If I'm going through a divorce, what was it you said about biomed? A: If the husband gets a court order, you might be stopped from doing a biomed treatment that's beneficial. It might also be hard to get the money from the husband to do the biomed. Q: Should there be any concern of impurities or issues coming from others' blood sourced IG? Does insurance pay a part of it? A: There is a 1 in 1,000,000 chance of a blood borne disease from IVIG. My sister is a cancer researcher, she asked Dr Gupta about the process, she felt it was a good process, safe enough for her nephew. The insurance might pay, especially if autoimmune is suppressed enough, like missing two antibodies when having titers tested, even though child was vaxed. Q: do you have your experience on ivig anywhere on website? A: We were published, but the magazine sold out of 250,000 copies! There was so much interest. It was Sept/Oct 2004 Mothering. You can go on tacanow.com and search Daniel's Story, you should find it. Or email me and I'll send you the pdf. Q: did you say if the child did not have 2 titers for vaccines they received they could qualify for insurance - does this mean the immune system is not functioning properly when they don't have the antibodies? A: Yes, that's what it means, missing 2 means the child is immune suppressed. Q: Would a regular pediatrician run that titer test? A: No, an immunologist. Q: will Canadian insurance pay for U.S treatment?? A: If you can get Canada to pay for it, let me know. All the families I mentor are fighting with the bureaucracy, they have not succeeded in getting it paid for. Q: How many titers are there to test for? A: I think there are about a dozen. Q: How many children recover from this therapy.. And from the dozen titers if two are missing the therapy is covered. A: I'm hearing from Dr Gupta it's about 30% recovery rate. He has narrowed who he accepts as patients. Yes, if 2 are missing, I'm hearing insurance will pay. --- End forwarded message --- ------------------------ Yahoo! Groups Sponsor --------------------~--> Click Here! ">Help save the life of a child. Support St. Jude Children¿s Research Hospital. --------------------------------------------------------------------~-> Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/asd_solutions/

romiaary, I bumped two threads started by a Mom who has a 7 mo. old son with a head/neck tic. She hasn't posted for a while, and I hope she updates us soon, but I thought there may be some info. in her posts that might interest you. The thread titles are "wet behind the ears and Pediatric Neurologist Appt". Just wanted to add that my boys did not tic as infants. The tics became noticable for both around 6ish. Evelynr, It looks like you have your posting problems figured out. If you want to repost your "Concerned" topic, try again! Ask your questions, and don't be discouraged if it takes a little while to get a response. Summer is such a busy time, but there are wonderful people here who will respond, as Chemar did, as soon as they get a chance. luvmylilrainman, My heart goes out to you and your son. We are the ones that are blessed to have you here. Here is a link to a website that I read daily. The posts come right to my email. EnzymesandAutism@yahoogroups.com There is a post there today from a Mom dealing with tics in her autistic child. A response to her from another mom talks about- Tourette like symptoms showing up in her son, when his yeast levels get out of control. There are posts there occasionally about tics. Personally, I believe it is all related. I know there are people who would disagree with this, and it probably does not apply in all cases, but it sure seems like the treatments and causes have a lot in common to me. If you are not a member of that group, I think you would find it very beneficial. I know how scary tics can be, especially when you can't even explain and reassure your little one, but maybe you can identify something like a virus, streph, yeast or bad bacteria issues (there are so many things)! that may be contributing to this new symptom. Very glad your here. I hope you will keep posting and asking questions. Sydsmom, I can't remember if you have tried enzymes for help in GFCF dept? Kim

Bumped

Bumping for newcomers

Andy, I know very little about the product. There had been a bunch of posts regarding Krill on the autism/enzyme board, and I had deleted them because I wasn't fimiliar with it and I have been trying to narrow my range of focus. Then Karen up and askes me that question, and I was wishing I would have read them. Your post gave me the most info I know about it. There also have been some posts regarding carnosine lately. They are mostly talking about which supplement to take it with. Someone said it needs to be taken with zinc to reduce hyperness, and they have taked about a product called Carnaware. http://www.carn-aware.com/ Most posts about results were postitive. As to Carn-aware, someone said it was a rip off and cheaper to purchase the supplements separately. Kim

Andy, At the appt. with the new DO for the boys, he mentioned that people in our part of the state test high for arsenic frequently. I'm assuming pesticides, fertilizers, weed killers and treated lumber as found in playground equipment? It must be gratifying and sickening at the same time, to see mercury levels doubling, and new toxins being pulled as well. Sorry to hear of the set back with the NDF+. You will have to let us know if the tic stops quickly with discontinuation As always, thanks for sharing this information. I'm sure many here are interested in NDF, and we all love to hear updates on your little one. Kim

Lisa, This product was discussed on the autism/enzyme website recently. Karen B. (one of the moderators of that bd. and the source of a lot of wonderful info) and I were chatting on Dr. Neubranders site one night and she asked me if we were chelating or using Krill. She said it crosses the blood brain barrier and it appears to be pretty popular on that board. Kim

Valerie, I'm so glad you decided to check this board out! The messages from Gary's site come to my email and I usually scan them. He has a great group for support, but not a lot of the kind of info I was looking for. His was the first TS group I found when I started researching for my boys, and I like to keep track of how he's doing. Occasionally, I will see a parent that looks like they're in the same boat I was and Iwill respond, usually directly and send them the link for this board. Anyway, I sent you a rather lengthly email before I knew you had posted here. I sent it to you directly and not to the group. I so hope you find the help here that I have. There are many people with such excellent knowledge, and really good support too. Again, welcome and I'm so glad someone is looking into medical issues for your son. Kim

Thanks to Karen B. from asd_solutions! If you received this e mail by error, click REPLY, add REMOVE and you will no longer receive Unlocking Autism posts. TRANSCRIPT OF MEET THE PRESS: AUGUST 7, 2005 David Kirby & Dr. Harvey Fineburg debate the use of thimerosal in vaccines and the potential connection with autism. Coming next, autism: what we know and what we don't know. Dr. Harvey Fineberg of the Institute of Medicine and David Kirby, author of "Evidence of Harm: Mercury in Vaccines and the Autism Epidemic," a medical controversy, next, right here on MEET THE PRESS. (Announcements) MR. RUSSERT: The controversy over childhood vaccines and autism, after this brief station break. (Announcements) MR. RUSSERT: And we are back. Dr. Fineberg, Mr. Kirby, welcome both. In your book, Mr. Kirby, you raise early on two questions. "Why did the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA) allow mercury exposures from childhood vaccines to more than double between 1988 and 1992 without bothering to calculate cumulative totals and their potential risks? Why ... was there a corresponding spike in reported cases of autism spectrum disorders? Why did autism grow from a relatively rare incidence of 1 in every 10,000 births in the 1980s to 1 in 500 in the late 1990s? Why did it continue to increase 1 in 250 in 2000 and then 1 in 166 today?" Have you answered those questions? MR. DAVID KIRBY: No, nobody's answered those questions. And we have to answer those questions as soon as possible. We need to solve this mystery. We need to get this controversy behind us so we can go on to find ways to help these kids. Mercury is toxic. It's a known neurotoxin. If it gets into the brain, it could stay there virtually forever. Children born in the '90s received mercury far in excess of federal safety limits. That's indisputable. And yet we're looking at a neurotoxin. And yet most of the evidence developed by the public health sector has been looking at the epidemiology. And we really need to look at what this mercury is doing inside the bodies and brains of these children if we're going to solve this mystery one way or the other. MR. RUSSERT: Dr. Fineberg, in your 2004 report from the Institute of Medicine, you said this: "While some information suggests that autism rates may be rising, it is not clear whether the observed increase is real or due to factors such as heightened awareness of the disorder or the use of a broader diagnostic definition. ..." Do you think there's an epidemic of autism or do you think it's simply a change in defining it? DR. HARVEY FINEBERG: There's definitely a huge number of cases diagnosed with autism, Tim. What is clear is that number recognized has increased dramatically. It's also clear that the definition was broadened markedly in the 1980s and 1990s, and there were increased incentives to recognize children from increased awareness and availability of services. No one knows with certainty what part of the increase is genuine, a genuine increase in numbers, and what part is from increased recognition of people who were already there but not previously recognized. Remember we're talking about a spectrum of diagnoses here, autism spectrum diseases, which range in severity from relatively mild to relatively severe. MR. RUSSERT: For a layman, in a few words, how would you explain autism? DR. FINEBERG: Autism is a severe neurodevelopmental disorder that is characterized by social withdrawal, by repetitive behaviors and by some kind of focal attention in its classic form. Basically, it's an inability to relate to others. MR. RUSSERT: Let me go back and review two of the studies that the Institute of Medicine did because this has helped feed much of this controversy and discussion. Back in 2001, the headline on your press release was "Link Between Neurodevelopment Disorders And Thimerosal Remains Unclear. Current scientific evidence neither proves nor disproves a link between the mercury-containing preservative thimerosal and neurodevelopmental disorders in children, says a new report from the Institute of Medicine... While very few vaccines given to children in the United States today still contain thimerosal, prudence dictates that precautionary measures be taken to decrease thimerosal exposure even further. ... It is medically plausible that some children's risk of a neurodevelopmental disorder could rise in part through increased mercury exposure from thimerosal- containing vaccines." Thimerosal being a preservative that is put into the vaccine. Then about three years later in May of 2004, the Institute of Medicine issued this headline: "MMR Vaccine And Thimerosal-Containing Vaccines Are Not Associated With Autism, IOM Report Says. Based on a thorough review of clinical and epidemiological studies"--I always destroy that word--"neither the mercury-based vaccine preservative thimerosal nor the measles-mumps-rubella (MMR) vaccine are associated with autism, says a new report from the Institute of Medicine..." What changed in those three years? DR. FINEBERG: When you're dealing with a problem as complex as autism, Tim, you have to look at it from many different points of view and assemble evidence from many different vantage points. Biological evidence in humans and in animals, toxicologic evidence, how does the body deal with toxins, and evidence looking at the actual experience in populations. When the 2001 report was written, there was a lot of suggestive information about the toxic properties of mercury and the problem of autism incompletely understood. By 2004, the main change was that there were completed additional studies that were actually looking in the population at the relationship of receipt of vaccines containing thimerosal and the development of autism. These studies were carried out in the United States, in Great Britain, in Denmark and Sweden. These studies covered hundreds of thousands of individuals, children, in these populations. They compared systematically in different ways whether you received vaccine with no thimerosal, with some thimerosal, with more thimerosal, and they looked at the relationship of those experiences with the development of autism. Uniformly, the best of those studies all show no association between receiving vaccine of different amounts with thimerosal or without and the development of autism. It was the absence of that association which was the main reason for reaching the conclusion that the evidence points to no association between vaccines and autism. MR. RUSSERT: Mr. Kirby? MR. KIRBY: Well, I think those flawed epidemiological studies range from severely flawed to seriously questionable. And I also think that you cannot rely solely on epidemiology to prove or disproof causation. In fact, I have right here--this is from the federal court system, but they ruled that epidemiology is not acceptable to prove there is no causal link between an adverse event and a pharmaceutical. MR. RUSSERT: Explain that in layman's language. MR. KIRBY: Well, it means that you really, like the doctor said, you can look at the kids as well as look at the large population studies. You need to look at the biology, the toxicology; you need to look at the cellular level. You need to look at immunology, and I would say that what the IOM did last year--I was at that meeting on February 9. Virtually half of the evidence that was presented against the theory was epidemiological--I have the same problem as you. The other half supporting the theory was largely biological. And yet the committee gave a preponderance of evidence or emphasis to the epidemiological evidence and rather, I would say, gave short shrift to the biological evidence. Dr. Fineberg has mentioned that there are 215 references in the report. I counted them up. By my count, it's roughly a 2:1 ratio, about 115 references for epidemiology, 60 references for biology, and of those, only seven were toxicological reports. Now, we're talking about a known neurotoxin, and there were no toxicologists on the committee, either. So I think even Dr. McCormick, the chairwoman of the committee, told me that there was definitely an emphasis on the epidemiology over the biological evidence. MR. RUSSERT: When we announced this program, as you might expect, we heard from both sides who are very emotional and passionate about this topic. The National Autism Associations, Dr. Fineberg, wrote a letter to us including this: "The five studies the Institute of Medicine based its conclusion upon are fatally flawed, have never been replicated and have ties to the CDC"--Center for Disease Control- - "(or foreign equivalent mandating vaccines in other countries) and/or the pharmaceutical industry. However, the Institute of Medicine chose to completely ignore the biological and clinical data supporting the link between thimerosal exposure and injuries to children conducted by independent, appropriately- credentialed researchers." DR. FINEBERG: Tim, the Institute of Medicine panel that came together represented a spectrum of experts who were asked to look at all of the evidence, and they did. They assessed the evidence that bears on the question. Some of it is biological, as I mentioned; some of it has to depend on what you actually find when you go out and look in the population. Is there or is there not an association? Keep in mind that there are many neurotoxins in the world. Dozens of natural and industrial substances have neurotoxic properties. When you're trying to assess a specific association, there are biological studies that are relevant, and there are epidemiological studies that are relevant. All of these studies are not equally valid. Some have more deficiencies and limitations than others. The committee went through very carefully and assessed each of those studies representing its strengths and weaknesses. All of this is laid out in its report, which is available for download to anyone who wants it from the IOM Web site, www.iom.edu. And anyone can read for themselves how the committee evaluated critically and carefully all of this evidence. When the letter you read states that these five studies were not replicated, I can't help but think that each one of them has been replicated four times. We have now a growing body of evidence, while imperfect, altogether convincing and all reaching the same conclusion, even though they vary in their methods and in their approaches. And that conclusion was no association between the receipt of vaccines containing thimerosal and the development of autism. MR. RUSSERT: Why was thimerosal then taken out of the vaccination? DR. FINEBERG: There's no question that mercury is a neurotoxin. And if there were ways, which there are, to protect vaccines without using mercury-containing substances, it was prudent to remove it, not because there was evidence that it caused autism or even definitive evidence that the amounts in those vaccines caused any neuro problems, but because it was an added measure of precaution that was sensible and correct. And I might add that the latest vaccines that contained any thimerosal as a preservative, with the exception of some flu vaccines, were completed in 2001 and outdated in 2003. So anyone watching this program, any parent can be confident that when they take their child to the pediatrician to be immunized this year, they will receive vaccines without thimerosal as a preservative. MR. RUSSERT: But prior to this year, there may be some concern? DR. FINEBERG: Prior to 2003, there were some that still had thimerosal, but the concern is not reaching the level of evidence related to the development of autism. The concern is a more general concern about mercury as a potential neurotoxin. MR. RUSSERT: Mr. Kirby? MR. KIRBY: Well, if I could get back to the IOM report, that meeting was held 14--or the report was actually issued 14 months ago. This story is moving very, very fast. In those last 14 months, there has been an equally growing body of evidence, again on the biological side, that would suggest that, in a small subset of children with a certain genetic predisposition, they are unable to properly process the mercury that they were exposed to. And, by the way, the rates of exposure were quite high in the 1990s. At two months of age, children got three shots for a total of 62.5 micrograms of mercury. For their body weight, that's 125 times over the EPA level. For me to reach that level, that would be about 1,125 micrograms. We know that certain children with autism, again, seem to have higher levels of mercury accumulating in their body. We know that when we give mercury to infant primates, the--there's two types of organic mercury: ethyl mercury in vaccines, methyl mercury in fish. What they found was that the ethyl mercury, once it got into the brain, it converted to inorganic mercury very, very quickly. Inorganic mercury basically gets trapped in the brain, and there's evidence to suggest that, in an infant brain, in the first six months to a year when the brain is still growing, when inorganic mercury gets trapped in that brain, you're going to have this hyper neuro inflammation, or the rapid brain growth that we see in autistic children. These are the types of things that I think need to be researched further. Yes, we need to look at the epidemiology. There's a whole lot of new biology. This has all been published. None of the biology was published at the time of the IOM hearing. It has since been published, and I actually wonder if the IOM would consider reconvening a new committee or a new hearing to consider the evidence that's come out in the year and a half since the last report. MR. RUSSERT: Would you? DR. FINEBERG: Tim, Mr. Kirby's description about the certitude of this evidence, I think, exceeds the actual balance of evidence that is produced when you look at the totality. It's true that mercury is handled differently in the body when it's in the form of so-called ethyl mercury, which is in vaccines, and methyl mercury, which was actually the form which was--on which the standards of exposure were based. That's the type found in fish, as has been mentioned. But when you look back at the studies of actual poisonings of children with large amounts of methyl mercury and ethyl mercury, most toxicologists believe that the ethyl form of the mercury is less toxic than the methyl form--less toxic to the nervous system. And that's based on many experiences with poisoning by these different forms of mercury. MR. RUSSERT: Many parents have written us over the last couple of days saying that they have put their child in the process of collation, which removes the mercury poisoning from the system, and they say they've seen vast improvement. Wouldn't that suggest that there may be some relationship between the mercury from thimerosal and the removal from the child? DR. FINEBERG: Tim, autism is a complicated illness, and children with a variety of treatments and non-treatments show improvement over time, which is all to the good. But when you have a single story and a repeated story of an experience that a parent has with a treatment like chelation, you have to keep in mind that the history of medicine is strewn with discarded treatments that people at one time believed in very, very strongly. When you have one case after another, it's one anecdote after another, and the plural of anecdote in scientific terms is not evidence. The only way to know whether a treatment works or does not work compared to other things is to do the clinical trial, comparing those who are given the treatment in a systematic and balanced way with those who are not. MR. RUSSERT: Mr. Kirby, in your book, you talk about a conference on June 7 to 8 in 2000 in Simpsonwood, Georgia. We've gotten many e- mails and letters about a government conspiracy, that the CDC and the FDA and the Institute of Medicine and everyone has gotten together and really tried to deny information to the parents of children with autism. Do you believe that? MR. KIRBY: Well, I think the word "conspiracy" and "cover-up," those are very loaded words and I never use them. I do think there has been a lack of transparency and I would think Dr. Fineberg would probably agree with that statement. In this entire process... MR. RUSSERT: Do you agree with that? DR. FINEBERG: I don't agree that the lack of transparency had had any bearing on conclusions, and I'm not sure what we mean by a lack of transparency. MR. RUSSERT: Right now many parents are seeking information from studies from the CDC through the Freedom of Information Act, and they're being told that the HMOs now have that information and they cannot share it because of privacy. And the parents are saying that's outrageous. It could easily be obtained by the CDC and disburse that science, that data so people can look at it and make their own judgments. Should the CDC at least do that? DR. FINEBERG: In fact, Tim, the Institute of Medicine looked separately in a different study at this system that was in place and did urge the CDC to make these records more available to qualified researchers. But that is not the same as a lack of transparency in the studies or in the reports. All anyone has to do in the case of the Institute of Medicine report is to read the report. All of the logic is laid out, all of the weighing of considerations. Not everyone may agree with each assessment, but they have all the relevant evidence right before them. MR. RUSSERT: Mr. Kirby, you have said, "I am totally willing to accept there are other factors at play. It may turn out not to be thimerosal at all." What do you think should be done? MR. KIRBY: Well, I think, first of all, we need clinical trials for treatments. We need to try to help these children as best we can. There is a clinical trial of chelation therapy under way right now at University of Arizona. Dr. Fineberg said we need these trials. I wish the government was funding them. We need to listen to these parents as well. And I think that they've gotten a lot of dismissal from the scientific community. Parents were telling scientists that their children were born normally and then regressed. A lot of people dismissed that and said that couldn't be the case. We now know from a brand- new study from the University of Washington using videotapes of one-year birthday and two-year birthday that is indeed the case. If the parents were right about regression, maybe they're right about chelation. Just getting back to transparency for one second if I could and this whole safety data base that we're trying to get access to from the report that Dr. Fineberg cited, it says right here, "The lack of transparency of some of the processes also affects the trust relationship between the NIP, the National Immunization Program, and the general public." The lack of trust and the lack of transparency is what's threatening the vaccine program, not talk about mercury. So the doctor's own committee said that there was a lack of transparency again inside this process of analyzing this data that was presented at that conference in Georgia. MR. RUSSERT: Many of the National Autism Association and other groups, Doctor, point to Task Order 74. DR. FINEBERG: Yes. MR. RUSSERT: This is the arrangement between the CDC and the Institute of Medicine, a one-page memo which helps define the study and why it won't be released. Is there a reason? DR. FINEBERG: I don't know what exactly that's referring to, Tim, but when the Centers for Disease Control contracts with the Institute of Medicine to undertake a study, they do pay the actual costs of the study. But keep in mind that the panel of experts that are assembled by the Institute of Medicine receive no compensation whatsoever for their volunteer service. And when a government agency conveys money to the Institute of Medicine, it's not the agency's money. It's the American people's money. And our obligation is to do the best we can to assess the evidence on behalf of the American public. MR. RUSSERT: Since thimerosal is now out of the vaccine, latest as of 2003, we will know in a few years whether or not there is a connection... MR. KIRBY: That's correct. MR. RUSSERT: ...definitively by the number of cases? MR. KIRBY: I think so, but again I think we need to look at the biology, but the epidemiology is very important. If the case rates start to drop in the next couple years, I think that will be hugely significant. If I could also just get back to this commission by the CDC of the report, I'd like to do that as well. MR. RUSSERT: Real fast. MR. KIRBY: Well, there's evidence that there was pressure put on the committee by the CDC, and we have internal transcripts. I think that's what you were referring to. There are transcripts of private meetings. Some of them were leaked. They're not obtainable through the Freedom of Information Act. Many people are trying to get copies of the other transcripts, and I do hope that the IOM will make those available in the name of transparency in this. MR. RUSSERT: Was there pressure? DR. FINEBERG: Absolutely not, Tim. In fact, the whole reason why the Institute of Medicine, the National Academy of Sciences, the National Research Council exists is to be an independent voice outside of government to work on behalf of the needs of the American people. That's what we do. Agencies do not always hear from us what they want to hear. Sometimes the evidence does not point in a direction that is welcome. Stem cell guidelines or information about climate change or, for example, the ways to fix the Hubble Telescope which came out of the national academies--all of these are studies undertaken on behalf of the American public and the same was true for our assessment of vaccine safety. MR. RUSSERT: You're absolutely convinced there's no connection between thimerosal and autism? DR. FINEBERG: I'm convinced that the best evidence all points to the lack of an association. These studies can never prove to the point of absolute certainty an absence of an association. But I would say this, other avenues of research looking at other possible causes today are much more promising ways to spend our precious resources. MR. RUSSERT: And our viewers should know that there is no thimerosal now in vaccinations, other than flu vaccinations, and so it's safe for your children to do--have that done. DR. FINEBERG: And even some flu vaccines for children are now available without thimerosal, as well. MR. RUSSERT: You believe there is a possibility of a connection? MR. KIRBY: Absolutely. And I think one day we'll find out that there might have been--this has contributed to some of the cases in autism in this country. MR. RUSSERT: Thank you for a very civil discussion. To be continued. We'll be right back. (Announcements) MR. RUSSERT: And we are back. Forty years ago, August 6, 1965, Lyndon Baines Johnson signed into law the Voting Rights Act. One year later, Dr. Martin Luther King Jr. appeared on MEET THE PRESS and talked about that very legislation. (Videotape, August 21, 1966): MR. ROWLAND EVANS (Publishers Nsp. Syndicated): You said recently that the "extravagant promises" made a year ago in connection with the Voting Rights bill, have now become a shattered mockery. What exactly did you mean by that, Dr. King? DR. MARTIN LUTHER KING JR. (SCLC): Well, I mean that this Voting Rights bill came into being to end not only discrimination in its overt expressions and voter registration but also to remove the atmosphere for intimidation, for economic reprisals and for the creation of fear that cause people not to vote. And one of the things we have found is that when you have federal registrars in communities, many more Negroes go out to register because they see a different atmosphere and they are not overarched or undergirded with the fear of intimidation and economic reprisals as much as they do in dealing with some of the local registrars that they have dealt with so long. Now, the problem is that after that bill came into being, very few registrars were sent into the South; I mean, federal registrars, and even today, all too few have been sent, and this is even true in some communities where we know that there are outright patterns of discrimination. (End videotape) MR. RUSSERT: Yesterday, thousands marched in Atlanta, Georgia, to commemorate the 40th anniversary of the Voting Rights Act and to urge the re-authorization of some of its expiring provisions. We'll be right back. (Announcements) MR. RUSSERT: Well, much more information on today's discussion on autism and our guests--you can find many helpful links on Viewer Resources page of our Web site, mtp.msnbc.com. Viewer Resources. That's all for today. We'll be back next week. If it's Sunday, it's MEET THE PRESS. © 2005 MSNBC Int Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/asd_solutions/

Giselle, Thank you for the excellent reply. I got to reading one of my favorite checks and balance articles to look at the effects of SAMe on undermethylated (high histimine) from an interview with Dr. Walsh at Pfeiffer: High Histamine (under-methylated) 40-70 is optimum histamine range for mental health considerations. Histamine is an important neurotransmitter which affects human behavior. This syndrome often involves seasonal variations in depression, obsessive-compulsive behavior, inhalant allergies, and frequent headaches. In severe cases involving psychosis, the dominant symptom is usually delusional thinking rather than hallucinations. They tend to speak very little and may sit motionless for extended periods. They may appear outwardly calm, but suffer from extreme internal anxiety. Most OCD patients with both obsessive thoughts and compulsive actions are in this category. Associated with under-methylation, which results in low levels of important neurotransmitters such as serotonin, dopamine and norepinephrine. Treatment focuses on the use of antifolates such as calcium, methionine, SAMe, magnesium, zinc, TMG, omega-3 essential oils, B6, inositol, and A, C and E. The dose of inositol is 500 to 1000mg. Choline is anti-dopaminergic and often makes undermethylated patients worse. Also bad are DMAE, copper and folic acid. Three to six months of nutrient therapy are necessary to correct this chemical imbalance. Symptoms will return if treatment is stopped. Two good labs for whole blood histamine are LabCorp and Quest. Also use a special absolute basophil count as a methlyation marker. The count must be direct and not differential. Alcian blue dye is the preferred staining agent. Best lab for this test is Direct Healthcare Access in Glenview IL 847 299 2440. This info. and more on these transmitters can be found on this page: http://www.alternativementalhealth.com/articles/walsh.htm Is anyone getting sick of me posting this link yet? I am also trying to figure out what tests are most important as first steps. I'm sure (hoping) the new Dr. will have his own ideas on this on the 11th, but after all of this research, I will have to keep a sock in my pocket in the event it's needed in my mouth. However, this time around, this Dr. has to be willing to work WITH me. I'm all out of blind faith. Thanks again! I'll probably be back with a few more questions for you on this, if that's ok? What a great Mom with such an upbeat attitude. Kim

Giselle, Can you tell me which lab you used for the neurotransmitters test? Was it this one by chance? http://www.neurorelief.com/ I read a post on autism/enzyme today referring to this lab. The posters DAN Dr. had recommended it. This is a test I have not heard very much about, but sure looks like there are some things included here, that would be very helpful. This is the "tests offered" page for the same Lab http://www.neurorelief.com/index.php?major=302 If this is the lab you used, could you tell which test your Dr. recommended? If you could give any info. regarding how useful you/your Dr. found this test to be, it would be appreciated. .

I had missed this one... Wednesday July 27, 9:00pm EST Alan Israel from Lee Silsby Alan Israel, R.Ph. is the owner of Lee Silsby Compounding Pharmacy. He graduated from Ohio Northern University College of Pharmacy in 1976. Alan works tirelessly to meet the diverse needs of his patients and to insure that they have the best chance to receive positive treatment outcomes. He is a member of The International Academy of Compounding Pharmacists and the Professional Compounding Centers of America (PCCA). Alan also has had an article published in The International Journal of Pharmaceutical Compounding, the premier educational publication for compounding pharmacists worldwide. Alan Israel from Lee Silsby Compounding Pharmacy Lee Silsby specializes in compounding for Autism. www.leesilsby.com (TD = transdermal) Q: What is your opinion of custom amino acids? Do you think they help with increasing glutathione in the body? We also use transdermal gluthithione and we think it helps? Also, we are using your td dmsa for 2 rounds, should we be seeing anything yet in terms of improvement? We are concerned with the strength being weak, or rubbing off. A: Amino acids are very important. We're always working on new formulas. We have a vitamin mineral formula that is GF/CF, and SCD, developed by Dr Baker, Dr Lonsdale, and the pharmacy. Lee Silsby has a study on their website on their TD-glutathione versus other companies' glutathione. Q: My son is about to start td-dmsa from you. What minerals/supplements should I be sure that he is taking? I have heard something about taking zinc, but I do not know how much or how often. Anything else? A: Your DAN! dr will steer you in the right direction. Additional supplements to the TD-DMSA – you need more vitamins and minerals. Zinc should be 30 mg, that's already in the Lee Silsby formula (vitamin/mineral formula). Q: Do most docs recommend continuing minerals on the ON days of TD- DMSA? Does DMSA have much affinity for beneficial minerals? Is it OK to keep your formulation of glutathione and TD-DMSA in the refrigerator? A: At the last DAN! conference, some drs said they go right through chelation with vitamins and minerals, in other words not just on OFF days not just on ON days. Store the TD-DMSA at room temperature. If you do refrigerate, put it on the door wrapped in a towel, not at the back of the fridge where it's really cold. Q: Do you have the transdermal EDTA at your pharmacy? A: A DAN! dr has asked for that, so yes we do have one. We looked at stability and penetration, and we feel this is the best, most stable formula available. Q: How much regression are you seeing with your TD DMSA? A: We only see regression if the dose is too high, so we caution DAN! doctors with their protocol. When they back off and lengthen time in between the regression does not appear at all. Q: how important is it to use gloves while rubbing on td glutathione or td dmsa? my son hates me wearing gloves!!! A: It's important, esp if you have mercury fillings. The glutathione is ok to get on you, but not the dmsa. You can use a glass bottle to rub on the gel. Q: What, to your knowledge, is the efficacy of TD-DMSA vs. oral in removing mercury? How much of the oral dose is actually "absorbed"? A: There is very little literature; Dr Bradstreet did most of the DMSA research. The TD-DMSA is much more effective then oral DMSA. When we first started working on TD-DMSA, we discussed with Dr Bock and Dr Lonsdale, and decided to go with ½ the usual dosage of oral DMSA. Even so, with the ability to penetrate, it's so much more effective. There are side effects (like yeast beast) with oral that you don't get with Transdermal. (Alan put his son on to speak, Adam, he's 30 years old. He's been chelated with DMSA. He is not on the spectrum, but had some things that kids on the spectrum do have) Q: Where is the best place on the body to apply TD GSH (transdermal glutathione)? How long does it take to absorb into the skin? Also, how long is TD GSH good for? Can you get a couple of months at a time when you fill the prescription? A: It takes 30 seconds to absorb most of it, but leave on 30 minutes at least. Apply to top of shins, top of thighs, elbows, etc, any thick skinned areas. Our version is 100% stable, you can order 3 months at a time. Other formulas tested lose 80% effectiveness after 90 days. Q: I have Melatonin which is hypoallergenic casein and gluten free - is this also scd legal? the ingredients are plant cellulose and magnesium stearate. A: Those ingredients are SCD legal. Q: I've looked at the ingredients in your ASD Vitamin/Mineral Powder. I'm interested in trying it but my son's current doses are higher than what it offers. How would you suggest getting the rest of the supplements into him. Prescribed compounding? He won't swallow pills, capsules, etc. We look for liquids. A: We could make a secondary formula for you to get you the levels you need. Work with your DAN! dr to get this. We can make them gf/cf and/or SCD. Q: What's the best test for checking metal excretion on TD-DMSA--is fecal OK for a kid who is not potty trained? When to collect the sample during the 3 day round? A: From my experience, patients have done 3x a day for 3 days, then 11 days off. They do the fecal test right before starting the next "round". We've seen much more metals in fecal then urine with our TD-DMSA. Some states (NY) do not allow fecal tests, but you can go out of state for that. Q: Is it important to be taking glutathione while chelating? Although I am about to start td-dmsa it is not in my son's reportoire. A: We're hoping by the next DAN! conf one of the drs who works with us will have a spreadsheet from her patients. It is important to use glutathione, in our eyes, while chelating. TD-DMSA, TD-glutathione, and a good vitamin/mineral. Some of the drs use IV glutathione, but I don't have firsthand experience with that. Q: My son is clearly a gut child and we only did one trial of dmps oral and he stimmed and became more autistic than i care to remember...I have been told by many parents that my son will probably test positive for metals and was wondering i would love not to put more pressure on his gut. And what role does glutathione play in a child's recovery i am fairly new to biomed and dan. A: Look at autismreasearchinstitute.com, there is a DAN! treatment protocol. Glutathione is important. Q: My daughter has done 2 rounds of TD-DMSA. She had a terrible reaction to TD-DMPS but is doing great (so far) with TD-DMSA. Just wanted to share with those who may have had a bad reaction to DMPS. Thanks Alan for talking to me before we started! A: There are about 350 children right now using the TD-DMSA. Q: Do you or could you compound vitamin C into a high-dose TD formula? If so, is this absorbed effectively? Also, what other vitamins and minerals do you make in a TD form? A: There are a lot of stability issues with transdermal vitamins, esp vitamin C. You should be careful, to get C transdermally might not be the best thing. Q: We started with oral DMSA, had the yeast problem. Switch to TD- DMPS, which we're happy with. Can you give us a crash course on which chelators have an affinity for which metals? A: Some drs say DMPS pulls mercury better, but we see that our TD- DMSA pulls mercury better. We're seeing variations of folks combining EDTA with DMPS or DMSA. Hopefully the DAN! drs will share what they're seeing at the next DAN! conference. Q: My 4 year old son is receiving IV push DMPS followed by push of sanuvis. He is seeing a DAN doctor in CA. How important is the diet during detox. What is the lesser evil....wheat or sugar? A: Diet is very important during detox, gut issues can occur. You should watch wheat and sugar, gf/cf is a good way to go. Q: Does TD DMSA pull less minerals than TD DMPS??? Thank You. A: We don't have that data. Q: I have been reading on many post that Nystatin has preservatives in it is this true? A: Nystatin off the shelf is about 50% sugar, with preservatives. We compound it gf/cf and sugar free with no preservatives. Q: Is giving Glutathione via a nebulizer effective? In conjunction with transdermal? A: There are folks doing both. I work with Dr Nancy O'Hara. We are reviewing it to see how valuable it is. In some patients she's seeing good, in others she's seeing no changes. It remains to be seen. Q: Alan, can you speak about the dosage of TD DMSA and how often one should test? Many people are wondering how long they will have to chelate. A: The dosage is 5mg per kilo. My son pulled all his mercury after 90 days, still has nickel. Many drs test after 60 days, each dr makes his/her own decision on when to test, but typically 60 days. Q: Are you dispensing much TTFD any more? Is yours a two part cream like the gsh? A: Ours is soy-free, yes we still dispense. Since authia came on market, we dispense less TTFD. The odor of our compounded version is less strong. Q: Does TD-DMSA have glutathione in it as well or should we get Transdermal glutathione separately? How many times a day do we apply td-glutathione? Does it help to apply it even on the td-dmsa-OFF days? A: Twice a day. Some practitioners increase to 3 times a day during chelation, and they notice the child is not as tired. Q: This question is regarding my NT kid who has lost complete self control after his flu shot this year and I give him Epson salt baths but the change has not reversed. He has gone from Student of the month to in the principles office at 6 years of age. Would he be a good candidate from td dmps or td dmsa? A: It's a cause for concern. Talk to your DAN! practitioner. Q: My question is what is the opinion of the speakers on IV push DMPS followed by a push of sanuvis? Do they feel it is safe and is it a quicker chelating process? A: I'm not familiar with sanuvis, and don't have DMPS experience. Q: Do you make a pleasant tasting herbal anitbacterial formulation for bacterial overgrowth in the gut ? A: There are many things on the market like biocidin, so we haven't compounded anything. Q: Any side effects while using TTFD? A: (this is Adam answering) I didn't notice any, except on the first night of using the formulation I was overheated. That seems to happen to me every time I start a chelator. I wake at 1:30 AM overheated. Other then that, no side effects. I'm done chelating now. My wife and I are about to have a baby, and she and I are both mercury free. The first several rounds make me tired, run down. By the end, there were no noticeable effects from it. So as the metals are pulled out, it becomes less different. The 3/11 schedule is better then the 3 on 4 off, because I really needed the 11 days rest. Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/asd_solutions/ <*> To unsubscribe from this group, send an email to: asd_solutions-unsubscribe@yahoogroups.com <*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/