Jennifer

efgh, www.909shot.com has some excellent information. The vaccine issue is quite complex and yes they do contain mercury unless you specifically request thimerisol-free, but then mercury is not the only issue. The book "What Your Doctor May Not Tell You About Your Child's Immunizations" is an excellent book as well. Before immunizing your child any further research the matter so that your decision can be a fully informed one. Jennifer

Claire, I have mini-trampoline, but the novelty has wore off for the kids...need to get thenm to do it again. A friend lent me a tape on rebounding and the info was absolutely amazing. Being that there there are no blood vessels in the lymphatic system it needs some help to get the toxins moving and like you stated rebounding is a great way to go about it. Mini trampolines are a minimal investment and certainly worth trying! Jennifer

Claire/NancyE, Thank you for your replies. Our son's moods have been much worse and am not sure if it is due to the primer or the enzymes we are using (as there may be some withdrawls or perhaps a combination of both). I guess we still have a while to wait for the test results. In the mean time we are trying to eliminate gluten again....what a chore!! Jennifer

Just wondering how your children are doing on the primer? You can e-mail me if you feel more comfortable. Thanks in advance. Jennifer

Hi Hume, Sorry I didn't get back to you sooner. Initially we had some good results with the doctor, but as more issues surfaced he did not show himself to be very competent and strung us along rather than being honest..things kind of turned into a power struggle. So long story short I wouldn't feel comfortable referring him. There are many good homeopaths, it is a matter of finding the right one. Sorry I wasn't more help. Jennifer

That is interesting about food colors and zinc. I think another reason to stay away from artificial stuff is to not burden the body any further with unnecessary toxins. I believe also that food colors are either high in phenols or salicylates ( can't remember which). My Feingold handbook talks about it, but it is packed away at the moment. Jennifer

Claire, Our son was never tested for pyroluria prior to going to Pfeiffer, so the only B-6 he is getting is in the primer we were given. According to Michael Lang who spoke at last spring's DAN conference (he had two autiistic children of his own that have since lost their diagnosis and are doing wonderfully) you can tell if you are giving too much b-6 because an excess amount can cause excitability. In excess amounts it can be neuro-toxic. He recommends starting gradually. That is about all I know. Pfeiffer didn't ever mention anything about b-6 and enzymes to me. Sorry I'm not more help. Jennifer

Claire and Chemar, Great discussion!!! There are so many similarities that I feel it is worth exploring the biochemical factors w/o applying a diagnosis. I think this all started with Pfeiffer's stand that they have not had success with treating Tic Disorder's and discourage treatment from their center for this issue. I believe the labeling is unfortunate because it may discourage parents who trust their doctor's diagnosis to seek treatment from their facility when infact they could receive a great deal of benefit. I have come to beleive that the best way to restore our children's health is through trial and error (as long as everything we use and do is safe)...we can't fit their symptoms into one neat fitting little category and call it good. The issues are obviously very complex and overlap. Zeroing in on a diagnosis may cause us to miss out on therapy that could be vital to their healing. Jennifer

The Pfeiffer doc mentioned a glutathione IV push as a good way to lower heavy metal bureden. I've heard of this method before and it is supposed to be side-effect free as well as non-toxic, however, it does need to take place under medical supervision and not all states allow it. Jennifer

Claire, I just read your post, we just got back home last night. Our visit went very well. The nurse that interviewed us said that she had really high hopes for our son, he was the "classic" child the clinic was even started for. I know what they say about tics, but in my 3 year journey with our son I have come to the conclusion that tics can be caused by so many different factors and another thing to consider as well is if they are "true" tics or OCD or self stimulatory behaviors? It was very easy for the neurologist to label our son with Tourett's Syndrome-his diagnosis couldn't have ben farther from what has been really going on. At this point in time tics are a complete non-issue with our son I have to say that our big break came with the fatty acid and liquid mineral supplementation. We are still struggeling with moods and melt-downs, heavy metal overload, sulfation issues, yeast and the list goes on. I agree that it is expensive, I think alot of it may be lab? Claire, I really hope that the test results shed some more light for your son. Also, the doctor mentioned that parents have been having great success with Houston Enzymes for casein/gluten breakdown. Some parents are not even following the GF/CF diet anymore with these enzymes. Keep us posted on the test results. Jennifer

NancyE, So glad to read your post. As a parent you probably feel a sense of relief that your child's test results reflected the issues Pfeiffer talks about. If you feel comfortable I would be very interested in hearing more of the specifics when you have your next appointment. Also, give yourself a big pat on the back for allready being on such a good supplement routine!! Hope from here on out it is just a matter of fine tuning and that you get some awesome results!!! Jennifer

Kimberly, In addition to the good info. from NancyE. something to consider is that a diagnosis may not always be correct. Our son was diagnosed with TS by a neurologist about 2 years ago, but I have since realized that his tics were part of a much bigger picture, I personally feel that he is on the spectrum. When interviewing doctors a few months ago from the DAN list I had more than one doctor tell me that many children on the spectrum suffer from tics, but do not have TS and that it was important to have the proper diagnosis. Many of the stories on this forum are so similar, we don't just deal with tics with our kids, but moods, some OCD, fears, meltdowns and allergies etc. I think that Pfeiffer is definately worth a try. Also, you mentioned that your child was worse on supplements. When we first started all the suplements 2 years ago our son got much worse too. It was explained to me that the nervous system is in such an excited state that any new supplement can aggravate things at first and as the body corrects the imbalances things can actually get worse before they get better. As far as fish oil goes we found that if we use it along with flax oil he does great, infact Dr.'s are realizing that some children don't do well with straight omega 3's they need to be given with a combo of omega 6. A word of caution about flax oil it needs to be cold pressed and processed in an oxygen free environment or the oil becomes rancid destroying the fatty acid chain. We order our oil from Body Bio. It is only good for 6 weeks, that is how fresh it is. God Luck!! Jennifer

Claire, The Pfeiffer institute offers outreach clinics, we will be taking our son to the one in Northern California in October. They have several ones throughout the year to accomodate those that don't live so close to their clinic. You can call the clinic and get a complete info packet and see if they still have any openings for the one this fall. The next one in in Anaheim CA, in February. Keep us posted. Jennifer

Robin, I'm not sure about where you can find a list of foods high in copper, perhaps you can try typing "high copper foods" in the computer search engine. I just had a hunch about molasses and typed in copper levels of molasses. Did your son have a hair analysis done? If his copper level was low in his hair that may actually mean that his body is not excreting it as it should and is hanging on to too much copper. Our son's hair analysis showed normal zinc and low copper, but the zinc in his blood was low..... this may indicate that his zinc is being displaced by copper. We won't know for sure until we test his blood copper level. Jennifer

Nancy, Thanks so much for the update, I am very excited to hear about the test results!!! I really think the MT promotion therapy is the key for our son, he fits too many of the symptoms Dr. Walsh discusses in the tape I ordered. I am pretty positive that his copper level is too high, he gets quite hyper after having chocolate (chocolate is high in copper) and just recently I bought some cereal he used to eat all the time (while he was on it his melt-downs were just awful, but I never made the connection between the cereal and his behavior) and the old meltdown behavior was back so I started wondering about the cereal...as it turns out molasses is the sweetner used and molasses is very high in copper....I don't think that this is a coincidence. I hope you get some good answers and progress with their clinic!! Good luck to you. Jennifer

Nancy, If you read this post I was wondering how your trip to Pfeiffer went? We have an appointment in October at the outreach clinic. Thanks, Jennifer

Nancy, From my understanding of Dr. Walsh's talk, if the protein is corrected, then it can do it's job- one of them being the break down of casein and gluten. Do fill us in on your visit to the clinic. I am so excited for you and your son!!! Best wishes, Jennifer

Claire, Just wanted to clarify that MT protien deals specifically with breakdown of casein/gluten; copper/zinc ratios; yeast control and heavy metal detoxification. The Pfeiffer institute offers information and support to doctors who are interested. I know that this is something that Dr. McCandless has started to incorporate in her protocol because of the excellent results. The tape I ordered was highly informative and went in to much greater detail than I can post. Good luck with everything!!!!!! Jennifer

Nancy, I can see I have missed a few days on the forum!! So hard to keep up, we just sold our house and have started packing (what a job)!! We did an IGE and IGG allergy test. He tested postive for delayed reactions to wheat and spelt as well as their gluten. He was negative with barley. We have since been using barley flour and have found it to be a very good substitute. Barley does contain some gluten, but it doesn't seem to bother our son any. As far as moods go our son was always perfectly behaved at school and would melt down the minute he stepped into the car when I picked him up. Tics and moods are not completely uncontrollable, they can to a certain point exercise some restraint and really let go where they feel "safe". Like I mentioned before the difference in his moods is so night and day since we have gone wheat free!!! Hang in there!! I understand completely what you are going through and it it not fun for anyone. Jennifer

Heather and Nancy, That is great that you will be going to Pfeiffer. I just know you will get some awesome results. We are contemplating taking our son to the outreach clinic. We have done alot of tests, but I feel like there is still quite a bit of fine tuning necessary, and they certainly have the experience! Nancy, Our son too had alot of mood issues. We found out he was gluten intolerant and since we have eliminated it he is much happier and resonable. Jennifer

Heather, That is great that you live so close. The institute also offers outreach clinics, but for us it would still mean airplane travel. Best of luck to you, and if you do take your son there keep us posted on the findings. Jennifer

Hi all. I just finished listening to a tape I ordered from http://www.autismone.org from Dr. Walsh from Pfeiffer institute. It is a tape of his talk he gave at the DAN conference last month. What great information. Our doctor has ordered the physician's information packet from Pfeiifer Institute so that he can review it and test our son. To make a long srory short a certain protein called Metallothionein is responsible for: break down of casein and gluten removing heavy metals from the body killing yeast balancing zinc/copper ratios If this protein is not functioning you will end up having problems with the above mentioned issues. The great news is that it is completely correctable...with natural supplements. The first phase consists of zinc pre-loading the second phase consisits of amino acids and other nutrients needed to form metallothionein. Dr. Walsh has been studying it's function for about 18 years and has had tremendous results. The Pfeiffer clinic website is http://www.hriptc.org and the phone number is (630) 505-0300. In our situation our son has all of the above issues, except for high copper, don't know that one he hasn't been tested. I am hoping that Metallothionein is an issue with him, maybe we can get to the root of WHY these things are going on. Hope this is of help to you other parents out there. Jennifer

Kimwal, I'm on the forum briefly this morning and onl have a couple of seconds so this post will be short, I'll get back on later this afternoon, but has your son been tested for an amino acid deficiency? Amino acids can be very critical with neurological disorders. Also, how long have you given natural supplements a try? We didn't see big results with our son until about after a year. It can take quite a while to correct nutritional imbalances. Like Chemar said your protocol may just need some refinement. Also if gluten and yeast are an issue, the stomach takes a while to heal so that it can assimilate the supplements and nutrients you are giving your child. If the stomach doesn't work right the whole body suffers. Hang in there!!!! Jennifer P.S. Make sure there isn't any aspartic acid used in any of the supplements you are using. Our son had a relapse about a month ago and then I realized his iron conatained asparic acid, a BIG NO NO for tics!!!!!!

Claire, Nutra-sweet does not like to leave the body. It contains methanol which breaks down into formaldehyde in the body. Formaldehyde stores primarily in the fatty tissues and is excreted at a very low rate. A good detox program would help lessen the body's burden. Dr. Mercola has a good article: http://www.mercola.com/fcgi/PrinterFriendly.fcgi Jennifer

Julie, Your story sounds just like mine. Our son started with those exact same tics when he was 6 1/2 years old. You have come to the right place, there are so many awesome parents on this forum with very valuable imput! We first started by eliminating all artificial ingredients and ended up doing mostly organic, many things I make from scratch..it is a job though and a process. You can't make such drastic changes over night. So don't get disouraged. We found a lot of relief from his symptoms through supplements, but the real break came when we decided to take him to a DAN doctor who is a naturopath. We found out that he has a wheat/spelt allergy and was suffering from malapsorption.....because of that all his vit/mineral and amino acid levels were way low. He also has yeast and fungal issues as well as elevated lead and mercury. Just taking him off the wheat has made an enormous difference. I think of the path we've been down and I am so glad we chose it instead of medicating him as was recommended to us by his pediatrician. The prescription was called in and ready for us to pick up, but I just couldn't do it. A great book to read is "Children with Starving Brains" by Dr. Jaqueline McCandless. She lists her current protocol...I owe a lot to her! She writes the causes and protocol in a very organized fashion. The book targets Autism Spectrum Disorder's in general, Tourett's is on the spectrum as well. Good luck and keep us posted. Jennifer