Dylans_Mom

Sounds like possible allergies to me especially if he is complaning of tummy trouble . If your son is craving foods like bread and chips I would most likely think it is casein or gluten or both. A friend of mine sent me the following theory by email, "My friend's theory: Casomorphins from the digestion of casein and gliadinomorphine or the gluten exorphin from gluten break down into nearly identical peptides. They are very difficult to digest and when incompletely digested, they interact with the opioid receptors. The opioid receptor is meant to react to its natural ligands such as endorphin. However, it can react to drugs such as morphine and also to exorphins such as casomorphin and gluten exorphin. This is proven fact, but now I move into my conclusion.... My thinking is that just as the opioid receptors in the CNS become habituated and NEED heroin, maybe the opioid receptors in the gut (or CNS again) become habituated and NEED the casomorphin or gluten exorphin." http://www.childrensdisabilities.info/alle...rsprotein7.html It wouldn't hurt to try casien free gluten free for a few weeks. If your son has a problem with these two removing them from his diet can be like taking heroin from an addict. This could possibly explain the outbursts. LOL, Dylan's mom

Thank you all for your replies. The tics are still better. I have not noticed his new tics in a couple weeks. We have been treating specific strep and brain antibodies over the last couple weeks with NAET. Strep Viridens antibody, M12 peptide antibody, streptolysin O antibody, Myelin Basic Protein antibody have all been treated. We still have Deoxyribonuclease Antibody and Hyaluronidase antibody to treat. I don't know if these are making a difference. Dylan's new tics are so infrequent that they are hard to notice unless you really watch for them. Maybe they are gone again? I hope this is not a wax or wane cycle. We have never seen this type of cycle before he was always just getting progressively worse. While I am hoping they don't come back I realize they may. Dylan's writing has always been bad. The only time I've thought it was good was the month following the first strep b antibody treatment. Then school let out and he is back to the same old writing when hschool got back in. I never thought his bad writing had any assosiation with his tics and ocd untill I noticed it get better all the sudden last school year. This is when I really started watching him and realized it was the repetetive writing that made it so bad. I always thought he just wasn't trying to write nicely. I've been trying to find a NAET treatment that will clear this up again because I'm so comfortable with them and I don't think they can be doing any harm. I don't think I should put all my eggs in one basket though so I'm trying to find other ways to help with the OCD. When Dylan does his homework I sit by his side and when I see him copy over a letter I gently remind him to only write the letter once. He sighs erases the letter and says, " Sorry I forgot." I think this is constructive but I don't know what is going on inside him. This does increase the time it takes him to do his homework but I think it is helping. Chemar, you mentioned suppliments for OCD. If tics are currently under control which suppliments are more specific to OCD issues. Dylan's mom

My son Dylan has what I believe to be PANDAS although this is not a medically confirmed diagnosis. We have seen great improvement using alternative treatments to try and attack his allergies and strep issues. One thing that is remaining that is causing some trouble in school is his handwriting issues. His handwriting is so hard to read and I don't know what to do. I never thought this was associated with his tics or ocd untill we tried a Naet treatment on strep antibodies and he seamed like a new boy for almost a month. While he is still 90%-95% improved his handwriting has once again deteriorated. When he writes he writes over and over the same letter on top of itself making it very hard to read the final product. His teacher is trying to get him approved for occupational therapy to help this. She did say it can take several months to get this approved if he qualifies. I am having a hard time finding info on what this therapy involves. I have heard some mothers mention it in this forum. Are there things I can do to help coach him with this problem. When I sit with my son to do his homework I am constantly reminding him to only write the letter or number once. He says it is so hard to stop himself from doing it time and again. I don't want to harp on him I know it's hard for him to control. Is my constant reminding helpful or harmful. He is bright but how can a teacher grade a paper she can barely read. Are there books that describe coaching methods to help with compulsions. Or does anyone have suggestions. Dylan's Mom

I am in no way an expert on Biomeridian but this is what I do know. Biomeridian is a computerized diagnostic tool used by many different practitioners. My NAET doctor uses the allergy point to help identify allergens much more quickly than with muscle testing; the results however have been the same. In my opinion the machine is a better constant than a muscle test because strength or fatiuge are not a factor. My niece has just started to have tics so her mother had the bloodwork done for look for casein, egg, and gluten allergies. The bloodwork showed she was allergic to eggs and casein but not gluten. She then took her for the biomeridian testing this confirmend that she was allergic to eggs and casien as well as it did show a much lower allergy to gluten. Which is right? I have seen this machine at a local health food store. They use it to decide which vitamins will work best for a client. They do not charge for the biomeridian test if you buy something. I have also met with a nutritionist who uses the machine to help her customize diet plans for her patients. I have read Ellen Cutler's book on bioset. Bioset is an offshoot of NAET. She also uses biomeridian as a diagnostic tool. To the best of my knowledge that is what biomeridian is is a diagnostic tool. Therefore it is only as good as the physician using is and what they can do with the data. The testing is painless. My doctor charged $45 for the test. It was not as in depth a test as what you described. Did you say $3000.00? That sounds pretty steep. Dylan's mom

A while back I took my son so another NAET practitioner in our area for a consultation because I had heard he was the leading NAET practitioner in our area. He is a little further away than our normal dr. but he is on the NAET web page and keeps himself current on all advanced training with them. I have a friend who was seeing him and he loves to say he has one of the largest vial collections of any practitioner he knows. I wanted to see if he had anything my dr. didn't. I took him an article on Pandas from this web page,"OCD and Differentiation between Non-Autoimmune OCD and the Autoimmune version of the disease called Pandas" by Aristo Voydani, PhD, MT. At the end of the article it has a large list of antibody tests for the disease. He kept the article read it and called his vial source to order vials for all the antibodies listed because he found the disease so interesting. He just called me back and I took my son in to be tested with the individual antibody vials. He showed weak to six of the eleven antibodies listed. We treated M12 peptide Antibody today.(I have no idea what that is.) I don't know if these will make any difference but I will treat them and let you know. He gave me the contact info for his vial source. He said he buys all his vials from a NAET pactitioner who makes and sells vials. This source had all eleven antibodies listed in the article. He said for practitioners to order vials they email Nick at alh@rainierconnect.com or call 360-832-8588.

Dylan has been back in school now for almost a month. I have not seen any increase in the new slight tick he is doing with his hand or any emergence of new ones. His stress is up slightly from the summer but overall he is 90% better than before we stated NAET. I still feel however that there is something I have missed because he still fidgets a lot more than my girls do and has this new mild tic. I was just comparing treatments I have done with items he still has on his list of sensitivities. I feel like I have been so stupid because so many of you have asked if I had him on any special diets and I haven't. He still has milk and all milk products listed as sensitivities and I have yet to treat them or eliminate them from his diet. From reading other posts milk seems to be a biggy in a lot of these kids. It's so easy to get headed down one road. I have been so caught up in the chemisrtry of tics that I haven't looked at all at his diet since I came across the strep. I need to try elimination see if it helps and then treat it with naet when I have time for the appointments. My sons list of sensitivities is just so large it's hard some times to know which thing to focus on.

I saw my naet Dr. yesterday and he said the strep antibody vial he has is not a naet vial. He said he also does a technique called JMT. He bought the vial at a JMT seminar years ago. The time he used this vial on my son was the only time he has used it for NAET. He said in a JMT treatment it is used to strenthen a weak immune system. He said he would check for me to see if he can find a resource for new vials. I'll let you know what he finds out. Dylan's Mom

One idea would be to call the Naet doctor's office on the list closest to you and ask if they could refer you to someone closer. My doctor said he took the classes with two other chiropractor friends. A lot of docs who have been trained are not on the NAET web page because they haven't paid to keep their name there. Best of luck.

Update August 27. 2007 Dylan it still doing well. However after about a month of being completely tic free I noticed a new very small tic he is doing with his arm where he pounds his fist lightly up and down on the table. While this new tic is no where near the intensity of his old tics it lets me know the problem is not totally gone. We have bee on Summer break and are headed back to school this week I am currious to see if the increased stress of being back in school will bring greater intensity to this new tic or possibly see the new ones emerge. Overall he is still doing much better. We have done very little NAET over the summer. We did treat Serotonin, Dopamine, and Norepinephrine. He still has on his list Cortisol, Adrenal and Heavy Metals. I will try to keep you posted on any improvements or declines. Dylan is not on any special diets and is seeing no other doctors at this time. He does take Solaray Children's Chewable multivitamin. Dylan's Mom

It is much harder to say if he is cleared form these other issues because they are not as visible as the tics were. I have noticed major improvements in his behavior though. He used to hate math home work and he would cry through it every night. Since we did the strep antibody treatment he has not complained once about his homework and is getting it done in 5-10 minutes as opposed to an hour a night. He has also been making math tests up on the computer and playing school with his younger sisters (totally out of the ordinary behavior for him). His handwriting has also improved dramatically from barely legible to not clearly readable. He is following directions better and seems overall calmer. I have yet to conference with his teacher since the treatments, I am curious to see what she says. He did come home a few days ago and said she moved him from the front center seat of the class he has had all year. I see this as a huge sign of change. On the other side we went to the dentist this weak and he still showed a great deal of anxiety over that. He We have not stopped treatments yet. we just finished a treatment for mercury and one specifically for the brain pathway. Next on his list left to treat we have Cortisol, Serotonin, adrenal, pineal gland, mold and milk. One other thing we have continued to do is give him the Solaray Children's Chewable vitamins which may also be helping. They have a good amount of B vitamins in them and since we have treated b-complex with NAET I am hopefull he is absorbing these better. Dylan's Mom

I'm not sure if accupuncture and accupressure work the same for this treatment. I know from the NAET websight she does train Accupuncturists to do this. You do not take anything by mouth you hold the energy vial in your hand durring the treatment. One side note I would not expect to find a doctor of NAET who has much experience treating tic dissorders. Nambudripad has a book on Autism and one on ADHD. I have not read them yet. The NAET guidebook has a list called the Autism Kit I have got a lot of good ideas from that list. This was my doctors first time using strep or its antibodies to treat anything other than strep throat. I think the more involved we can be with our doctors the better chance of success we will have. We know our kids history better than any doctor could. We live just outside Salt Lake City, UT. My Doctor is not listed on the NAET web page. Dylan's Mom

I know I can not do this answer justice but I will try. This is the answer in simple terms. It made much more sense to me after reading the book. It sounded a little crazy to me at first as this was my first step outside western medicine. It seams to produce results however. My doctors office is packed and it is all referal business for which he has no incentives. The basis behind NAET is that the body has 12 energy pathways or meridians. If one or more of these pathways gets blocked energy cannot flow freely and a backup will occur causing illness. Every item around us has an energy field specific to that item. A NAET doctor has in there office vials filled with the specific energy for hundreds, or depending on the doctor thousands, of vials. To test for blockages most NAET doctors use a method called muscle response testing. This method is described in the book. The practitioner will have you hold a vial of a specific energy for example strep. They will then check for muscle weakness as they touch points corresponding to to each of the twelve meridians or pathways. When they find a weakness they will then treat that specific pathway to clear the blockage. Many allergens will affect more than one pathway. In my son's case a vast majority of his blockages are on the brain pathway. (Brain pathway is not the technical term I believe the book refers to it as the governing vessel.) While the practitioner is performing the treatment the patient holds the vial of the offending energy ie. strep so that the body can be retrained to keep its energy flowing properly in the presence of the offending energy. I first read the term PANDAS here on this web page. I searched for a clinical definition on line which described the elevated antibody levels and the fact that the strep and or antibodies attached to the basil ganglia. My doctor had a vial for strep bacteria, two strep antibodies as well as every part of the brain. My son showed a blockage to strep, only one of the antibodies as well as basil ganglia all of which were blocking the brain pathway. I thought strep is a bacteria wouldn't everybody have a blockage so I had him check me. I did not show a blockage to step I did however show a blockage to the same antibody my son had. After reading the PANDAS descripion I would have had my sons blood tests done to determin his antibody levels but I had a NAET appointment the next day. I thought it couldn't hurt to try that route first since my family has huge allergy issues with antibiotics. So far this seams to have worked. I hope it holds. Dylan's Mom

I am in no way an expert just a mother with a similar child. In my research there is no one thing that is a magic cure for all children with tics. Each child is different each has a different medical background. I believe in reading posts from several people with tics that most have some kind of sensitivity to either food, chemicals, past illnesses, or immunizations. This common thread led me to look at allergies as a possible cause for my sons problem. I read DS Nambudripad's, "Say Good-bye to Illness" This book explained how to identify your own sensitivities since each person is different in this respect. I have found this book along with NAET treatments to be useful is my son's case. What I liked about this is that the treatments are not the same for everyone they focus on your childs own sensitivities. At least by going through the testing you might learn what these are for your son. By doing so even if you don't go through the treatments you might have a better idea of what he should avoid. Check out NAET.com if you are interested it explains the treatment as well as can help you find a practitioner. Dylan's Mom

I haven't had a name for my son's condition. When he was two years old he had his first strep and while we were treating it he had an allergic reaction to the pennicillin so we stopped the dose before it was done. I don't know exactly when his tics started but I remenber them being very mild when he was very young I can't say for sure they weren't present before the strep but like I said he was only two. His tics started mild with blinking and mouth opening. About the time he started kindergarten his tics got noticably worse. (I now think maybe this was because he got his Kindergarten shots the week school started.) He started touching his chin to his chest. He also became incredibly germophobic. He would not eat anything he had seen someone touch including me. His doctor said it was stress and not to worry childhood tics were normal and would go away. We did however try an anxiety medication at the time which didn't help at all so we quit giving it to him. When he started first grade he had another case of strep. I remember this case vividly because the school sent home a note telling parents strep had affected over half the kids in his class and not to send our kids if they had any fever or soar throat. I caught the strep from him and had to go through four different antibiotics before I could get rid of it. His tics once again increased this year I thought it was just increased stress over school getting harder. His tics have never been gone however thay do get worse in stessful situations like playing sports or doing homework or taking tests. My son is now at the end of his third grade year. All year long his teacher has been on my case to medicate my son because he is so disruptive in class. She calls him ADD. I had my son evaluated by a pediatric phycologist who said his symptoms were evenly spaced between ADHD inatentive, OCD, Anxiety dissorder, and Touretts. He said we could choose one to treat medically with drugs or alternate drugs for all four. I didn't want to put my son through that. His Tics for the past year have been nodding his head three times, turning his head to look over his shoulder three times, and bowing three times. He then starts over with the nodding. When stressed in class his teacher says he squeeks. I have only heard this at home when he is working on math homework. We had started seeing a NAET doctor after trying every herbal remedy I could find on the internet that I was comfortable with. NAET is an accupressure treatment done while holding an offending allergen retraining the body to release its blockage to the specific substance or energy. There are no needles and you never ingest anything. I had no idea this would work I was only hoping for a mild improvement. I figured worst case I was out time and money. For a more thorough explanation of NAET I have to recommend NAET.com. My sons tics were constant up to the point we treated the strep antibody. They are now gone with the exception of during treatments for other blockages also on his brain pathway. My son wanted to play Baseball this year so we signed him up on a rec league. Every time he got up to bat he couldn't even watch the pitcher he was so busy ticking. The boys on his team have been terrible to him calling him a dork for the way he bows at the pitcher. A week after his treatment for strep antibodies he played his first baseball game tic free and got his first hit of the season. I have never seen him smile so big. I only hope this holds and might be an answer for others.

Believe me I know how exhausting this is I hope this treatment can be useful for many people dealing with this condition. Yes the strep and strep antibodies were in vials. I have no idea how the doctor got these vials but luckily he had them. If you have the book, "The NAET guide book the companion to "Say Good-bye to Illness"" There is a list on page 34 of the book called the NAET Autism kit 8. This list has all the vaccinnations as well as parts of the brain and some other items on it. My son had several blockages of items on this list including the two vaccinations I listed earlier, Basal Ganglia, which comes in a vial. food coloring and food additives. I would assume doctors buy these vials in kits from Nambudripad since they are listed this way in her book. The strep was not listed in any of the kits however so I'm not sure where my Doctor got it. I'll ask him when I go back in 2 days. The companion book does talk about treating Virus/Bacteria using the patients blood, urine or stool on page 12. We did not try this since my doctor already had vials. When the doctor tested each of these allergens for their blockages using muscle response testing the only pathway each one affected was the brain pathway. The treatment that actually stopped the ticks was the Step antibody Aab. However later when we treated Food Additived the ticks came back durring the 24 hour clearing period so I would assume they were a major offender. Outside of ticks durring clearing periods I have seen none in over two weeks. I know this doesn't sound like a long time but he hasn't been tic free in over three years since his last case of strep. I feel like a lock has been taken off his brain. We are going to treat the Brain Pathway to hopefully fully clear it in two days. I really hope this is the end of tics for him. I also hope it might work for others. Let me know. Dylan's Mom

Patty, I don't know if this would be at all helpful but I had our NAET doctor check me for blockages to strep and the antibodies as well as my son since I know some of this is passed from parent to child. I did not show a blockage to strep but I did show a blockage to the same strep B antibody as my son. Since your Naet doctor will be looking for blockages don't forget the strep antibodies they can be present without an infection. Thank you for your post months ago it is what helped me find the term PANDAS in the first place. Dylan's Mom

Hello everyone! This is my first post on any web page. I have always been a reader but never felt like I had anything usefull to share. I have a 9 year old son who has been suffering from nuerological problems I frst noticed when he was about 2. My son first started with mild head and face tics. He also exibited adhd innatentive behavior as well as sevier anxiety and obsessive compulsive tendencies. For a long time I thought maybe his behavior was normal chilhood behavior and he would grow out of it. Over the years his tics have increase to the point where a couple of months ago he was in a state of constant ticking. He would nod his head, turn his head over his shoulder, and bow all three times in a row over and over and over. His teacher had also complained he was having vocal squeeking outbursts in class he could not seem to control. I have tried so many natural remedies over the years cutting out sugar, giving him fish oil, vitamin B supliments as well as other mixtures some of which showed small improvements in his behavior. A couple months ago a friend who was receiving NAET treatments for her allergy to milk recomended to me I try the treatments for my son because she had read they could help ADHD. NAET is a therepy that uses energy and accupressure to clear allergies. Not having any better options at the time I decided to try it. We started by treating my sons Autonomic nervous system, then eggs, calcium, B complex, sugar, yeast, grain, food colorings. After these treatments I thought what have I done. It seamed as though my sone was getting worse. Now instead of a tired listless kid with all his problems he had more energy than ever which appeared to exagerate his problems. I knew the treatments were doing something so I decided to read the book "Say Goodby To Illness" written by D.S. Nambudripad the discoverer of NAET. After reading the book my mind started thinking about what my son had come in contact with that could have started his condition. I remembered when he was 2 he had his first case of strep throat. After about 6 days on Pennicilan he broke out in a full body rash. We took him to the doctor who said it was an allergic reaction to the drug and we should stop giving it ot him. He looked at his throat and said the infection appeared to be gone. I wondered if this was were it had all started. I started looking on the internet for strep and turrets or OCD info and found this web page. I read a strand that mentioned PANDAS so I looked it up to see what it was. When I read the description I knew this was my son. I could not run fast enough to my NAET doctor to have him check my son for a blockage to strep, strep antibodies, and the basil ganglia. He had never heard of Pandas but was happy to check these items. To his surprise my son had a blockage on his brain pathway to Step, the strep b antibody, as well as a blockage in his basil ganglia. He immediatly treated him for strep that day. There is a 24 hour clearing period durring which we saw no change. However the next day his tics were somewhat decreased so we went back and treated the antibody. Immediatly after treatment the tics ceased. I could not stop staring at my son I had not seen him tic free in years. Just to be on the safe side we also treated basil ganglia.Excited by these changes I started looking for nueralogical blockers so I had my NAET docter check him fo vaccines. He showed a blockage to Rubella and pertussis vaccines again on his brain pathway. We treated both of these. We also found sensitivity to food additives and mercury on his brain pathway. During each of the treatments following the strep antibody I have noticed mild ticking durring the clearing period but none after the clearing period. My doctor said this was the first time he has heard of using this treatment for this specific illness and I could not find any other information on using NAET to treat Pandas on te internet. The closest I came was a posting on this web page by Patty in October of 2006 were she stated she tried NAET with no results. If Patty reads this maybe she could have here NAET doctor check for Strep or the antibodies. If anyone else is interested in learning more about NAET the web page in NAET.com you can find a list of practitioners there. I hope this post can help other moms find possible help for their children.