Andy

Heather It is always good to hear good news and I have been following your success for a while now. Have not seen to many of your posts lately but I believe that you were using NDF for your son and you saw a big decrease of tics. I have read some of the research behind it but was not sure how much was fact and how much was spin. Could you give us an update on the NDF treatments and what led you to use it?

The list that I am providing you below was taken from Dr. Amy Holmes website. I would recommend that you type her name in a search engine and read thru it. The list of doctors that this website refers to is an excellent one as well. I picked my doctor from seeing his name on both websites, on DAN conference papers, and a personal recommendation. I would suggest that you look into whoever you choose and also factor in the costs. Once you start it is only fair to go all the way with it and Claire made a good point about how Pfeiffer seems to have it worked out with certain insurance companies that the majority of costs are covered. Richard B. Menashe, P.O. 15 South Main Street Edison, NJ 08840 tel: 732-906-8866 fax: 732-906-0424 James Neubrander, M.D., F.A.A.E.M. 15 S. Main Street, Suite 6 Edison, NJ 08837 tel: 732-634-3666 fax: 732-634-8008 Stuart H. Freedenfeld, M.D. 56 So. Main Street Stockton, NJ 08559 tel: 609-397-8585 fax: 609-397-9335 Roberta Foss-Morgan, M.D. 30 N. Haddon Avenue Haddonfield, NJ 08033 tel: 856-216-9001 fax: 856-616-9837 Scott R. Greenberg 1907 Greentree Road Cherry Hill, NJ 08003 tel: 856-424-8222 fax: 856-424-2599 Allan Magaziner, D.O. 1907 Greentree Road Cherry Hill, NJ 08003 tel: 856-424-8222 fax: 856-424-2599 Emar Vogelaar, M.D. European Lab of Nutrients, Vitamin Diagnostics Inc. Route 35 and Industrial Drive Cliffwood Beach, NJ 07735 tel: 1-732-583-7773 fax: 1-732-583-7774

His tic increases are the following, 2 years of age, 4 years of age and 6 years of age. We have had great success with our plan of action so far. However, there is no one thing that will succeed but a multi-approach of feeding the body, getting out the poison and healing the body needs to be made. The sooner one starts the better. We took small steps with our treatment plan for we were directionless and had to search out for ourselves but with all the proven research and availability out there now it would make sense to take great strides. The path has been made by the real DAN and Pfeiffer' doctors and the kids they treated for others to follow.

Thursday's trip to Miami was cancelled. Son has been sick and has not recovered yet. Actually alot of his classmates are sick as well. It is part of being a child and living in an air condition environment

Daniel, my kid was a complete mess with his tics. It started out as one and just got worse as he got older. We tested for delayed food allergies with a blood test, 4 vials I believe, and he tested positive for Rice, Dairy, gluten- which is basically all breads as well, soy, corn, cane sugar, and mushrooms. Can't forget the mushrooms. We placed him on a restricted diet and had amazing results. The kid slept at night, the kid's behavior became stable, the kid was able to go to the bathroom, the kid stopped complaining about his stomach hurting, etc... and the tics decreased and then came back with new ones and stronger. We then had his blood tested again for vitamin,mineral and amino acids and he was found to need a ton of supplements. We did that and for around six months the tics were not an issue. Then they came back again to a point where the kid could not walk without bumping into walls or falling. So we went for the detox. Basically, I feel that all of his issues are based upon the heavy metals that were found to be in his body. The first two steps were needed but more needed to he done. So the rational is if the heavy metals are taken out his body will be rid of the poison and real healing can take place. There are different types of detox. Some are extreme while others are more passive. Most seem to be real, some are scams. As Claire had stated, find a DAN doctor and let him guide you and use the list that could be obtained from this website for a real DAN doctor. If you need help, e-mail me.

I have read in the standard TS books, I have long since threw them away, that it is hard to get insurance if you mentioned the TS label. I found alot of falsehoods in the standard TS books so I am not incline to take that as a fact. We could not get money back with an out of network doctor while his office was stating that my child was being treated for TS. AS far as the insurance company was concerned, prescribed pills was the treatment and their network doctors could give it. The trick is getting the right codes. We are now using the code for toxic metal posioning. As Claire stated check with an insurance representative and I would also check with the doctor as well and make sure that the billing department knows what codes to use. Apparently Pfeiffer got that part down for so much depends on the doctor's billing office.

One other note, it has been shown that mercury levels in the mother can be passed on to some extent to the child. This might be part of that so called family link. As you can tell by now I hate the labels of TS, Autism, etc. I feel metal poisoning would be more accurate and informative.

Caz, I should also state if you look at the blood, urine, and stool results of many TS labeled children that were tested you will see that many of them have the same vitamin, mineral, and amino acid deficencys as autism kids who were tested have and alot of them have the same food allergies/leaky gut/yeast issues that the autism kids have as well. I am glad that you brought up that point for it leads one to believe that TS like autism may be an induced condition. Lets face it Coal burning factories produce mercury and that is around the time that TS showed up and mercury in vacination shots were introduced a few years before autism showed up and if you look at the medical list of mercury poisoining you will see the same symptoms shown that fall under TS and autism. Based upon that one would think that there is a connection and that is why I sought out a DAN doctor. I only wished I did it the first time I saw someone here post about a DAN doctor around two years ago.

My readings of the DAN doctors papers and speeches is that they are leaning towards Tourette's, ADHD and OCD as being part of the autisum spectrum of behaviors but at the lower end of severity. Now with mainstream medicine, they look at you for five minutes, look in their book for 5 minutes and label so they could prescribe. At least that is how I look at it.

I was at a meeting last night and the book was mentioned repeatly. I am planning on buying it tonight.

"think those stats on improvement are historical for TS and do not necessarily reflect this new generation of kids who had mercury vaccines in the 1990's through 2001. Nor the daily up close exposure to aggravating (for many) CRT screens." Good point Daniel. My kid started to show tics at 2 years of age when the data then stated that TS tics showed from 6 to 9 years of age. I could only hope that the tics go into remission later on for my kid but how could I do nothing while they only got worse and his profile does not seem to fit the old criteria. No one here knows the answers. I could only speak for myself that I try to look for the latest research on what is working and apply that where it fits into my son's case. This is one of the reasons why I am so big on DAN. I also agree with Claire that as time goes on and all of the research continues better methods of treatment with higher success rates will be formed. However, I can not wait for that for I am concerned that if my kid is this bad now what will he have to deal with a few years down the road plus I am concern about the damage that the heavy metals are doing to his body now. If a child ate lead based paint chips do you think any Dr. or political leader would say that the paint chips are not to blame and take some medication that was designed for something else even if it may bring you more damage. I think not. Yet that is how I feel we were treated and my son didn't eat anything but was given a vacination shot after his mother was made scared what could happen if he didn't get them.

I believe that supplements should be based upon testing. I do think that anyone who does supplement should consider their child's body weight more than their child's age. I am a big advocate of supplements, however, one should be careful and read the label carefully for not only the supplement but also the filler/other ingredients. I find that this website is a great source of information inregards to supplements and products of.

You right Claire, I was thinking about that as well and was planning on getting a urine test as a "second opinion". I do not believe that we can over test our kids only over medicate and over treat with alternatives as well. Thanks Spring for your words. This is a long trip with alot of ups and downs and there may not be a final solution as of yet but there is progress that is making our kids lives easier for the long run.

Listed below are some websites and books that might interest anyone who is looking at restricted diets and foods to make those diets livable. We tried to follow the diet 100% inside and outside of the house. I ate the same basic foods as my son so he wouldn't feel excluded at meals. He had most of the yummies for himself. www.gfcfdiet.com http://groups.yahoo.com/group/GFCFrecipes Food Websites www.missroben.com www.ener-g.com www.glutensolutions.com www.glutino.com www.kinnikinnick.com www.betterbatter.com/catalog.html www.bobsredmill.com www.pamelasproducts.com Helpful Books Special Diets for Special Kids by Lisa Lewis Special Diets for Special Kids, Two by Lisa Lewis Unraveling the Mystery of Autism and Pervasive Developmental Disorders by Karyn Seroussi - BEST The Gluten Free Gourmet series by Bette Hagman Special Diet Solutions: Healthy Cooking Without Wheat,Gluten, Dairy, Eggs, Yeast, or Refined Sugar by Carol Fenster. Special Diet Celebrations: No Wheat, Gluten, Dairy, or Eggs, by Carol Fenster. Allergy Cooking with Ease: The No Wheat, Milk, Eggs, Corn, Soy, Yeast, Sugar, Grain, and Gluten Cookbook by Nicolette M. Dumke. 5 Years without Food: The food Allergy Survival Guide by Nicolette M. Dumke. The Feel Good Food Guide: Easy Recipes Free of Sugar, Wheat, Yeast, Corn, Eggs, Dairy, and Soy by Deborah Page Johnson.

This Thursday will be my son's third IV detox. We are also starting the DMSA, 3 days on 11 days off treatment next week. Good news is that my son got his stool test results and after 2 years of a special diet and probiotics, he was tested clean of yeast. I have not yet seen the report myself so it will be interesting to see all of the details this Thursday when I will pick up the hard copy myself. We are hoping that his majority of food allergies will be gone in a years time. An interesting note is that my son is starting to demonstrate that he could contain his tics for a period of time. I have seen him from going from ticing every 30 seconds to not ticing for a couple of hours, school show-cousins house, to ticing again afterwards. I would like to think that this is a sign of his condition lessening. Once again, I do not think that the detox is the complete answer, I do think that it is the needed third step of his treatment. The first two being the restricted diet and supplements.

Soy is one of the foods my son can not eat due to food allegies. However, I would be careful with any soy product that I would have had in my house if he wasn't. Soy is a wonder source of protein and can be used for so many things. However, I what I read over the years about some of the ways soy is being processed and played with chemically with its uses is concerning to say the least. ad_ccl, I am glad to hear of your progess. I am a big fan of the food elimation diet. I think it was around 25% of the solution that we are seeking.

Fish oil was great for my kid. It actually raised his levels in the Omega areas. However, if one is using fish oil they should make sure that it was distilled and purfied to ensure no mercury. As for the posts ahead of me and the question posed by the guest, fish oil is not for everyone and the three day rule should apply to it as well.

good question.

ad_ccl, thanks for the complement. I think that all of our kids must be incredible kids for dealing with what they have. Glad to have read your good news. We are still waiting for the yeast results for our son. It would be interesting to see if that will be another part of the solution. Currently my boy is in his third week of gasping for breath tic. Not having fun with that one.

No tics is wonderful news. Understanding that you are concerned about your son's wieght and enjoyment of eating certain foods I could see why you want to go back to the old routine. However, if I may suggest, I would recommend that you add one food back at at time with a spacing of every three days to see if any short term reactions occur just to be on the safe side. I noticed from your posting that your son had very little food allegies and not much in regards to metals. Based upon that there is a chance that you nipped the problem in the bud and the problem, as others here seem to hope, was only a yeast issue or PANDAS. As for supplements, I never will give a supplement unless a blood test showed that it was needed. Hope that the tics do not return. If they do. Then the issue is bigger then you were led to believe and I would suggest that you check your insurance and find an alternative doctor that will do a battery of blood, urine and stool tests to find the cause. It will not hurt you to educate yourself about them now as an insurance policy that you hope that you will never need. Best of Luck to you and your child, Andy.

Thanks for that report Layne. I was planning on buying KIrkman's lotion for it would be one hundred dollars less a month then what I am spending now at the compounding pharmacy.

I have yet met a traditional doctor who wanted to find the cause of the tic. Instead all I met were doctors who wanted to suppress the tic. To me this is not practicing medicine. I would recommend to Daniel, Sparten and everyone else out there to find an alternative doctor and have testing done. Even if the tics are mild now for the young ones they can become worse and instead of waiting to see what happens you can become proactive. Check for delayed allegies, check for a deficiency of vitamins, minerals or amino acids, check for a leaky gut or high yeast and check for heavy metals. But most of all check out your insurance first and get proper referrals to save tons of money. Yes life has it's ups and downs but we do not have to accept the downs when they are avoidable and correctable. I am a big avocate for testing and removal of heavy metals not just for the TS but also because there is alot of data/research that shows traces of mercury in cancer cells as well as a correaltion on cancer increasing with the vac shots. As for the point that Daniel makes, I agree that we have to keep our kids and/or ourselves positive and keep in mind self-esteem/confidence at all times.

Glad to hear the good update on your son now go and make some money and pay off those bills.

My son got a bad rash from his compounded pharmacy lotion but that ended when we started changing the area of application. I heard someone else state, we share the same doctor, that their child also had a rash issue no matter where the application was made and they switched to the oral form. The latest DAN conference in Boston should be over by now and it would be interesting to see the latest information inregards to the various treatments and sharing of data. My son too is ticing away with gasping for breaths and towards the afternoon and evening the turning of the head. We are hoping that this is detox and not just the usual really noticable dose of tics that come and go and come and stay and then go and etc.... Hang in there and like we say at home observe everything and count out nothing. This is a long haul with no quick solution but the solution is worth the effort and journey.

I would second what Claire has stated. I have had my son take those type of tests as well and used the results.