Jennifer

efgh, In our case our son was almost 9 pounds. So birthweight is not an issue for him. Jennifer

When trying to eliminate yeast the die off reactions can be quite ugly. I recently read that carbon can help counteract the toxins being released by the dying yeast. Carbon is a very potent toxin absorber. Jennifer

Claire, In addition to the brands Phyl mentioned, Coleman's put's out a good hot dog with no nitrates..it is very tasty. Jennifer

Claire, DMSA is a substance used to chelate heavy metals. In a challenge test one dose is administered and urine is collected for 6 hours. The lab checks the urine for heavy metals. Mercury cannot be detected through a blood test unless it is on going mercury exposure. After 3 months it is no longer free flowing in the blood stream and binds very tightly to tissue. Using DMSA helps dislodge the mercury, it is then excreted through the kidneys and the amounts are measured in the urine. I have read though, that if mercury toxicity is strongly suspected based on symptoms and the urine test comes back clean that doesn't mean you're in the clear. Mercury with time becomes harder and harder to remove and may not show during a preliminary challenge test. Jennifer P.S. I'm editing this post because I just read your latest on the mercury results. I know how you must feel. We want all the answers to get our kids well, but when we find certain things out it is overwhelming!!!!!!!!!!!!! I'm not sure what kind of advice to give on mercury detox. There are so many factors. You want to make sure the detox pathways are functioning properly before you start cleansing or you run the risk of the mercury redistributing somewhere else. From what I've read preliminary tests for kidney and liver function are basically manditory before trying to get the mercury out and you want to try to lower the body burden before using supplements such as alpha lipoic acid to get it out of the brain. The latest thing seems to be boosting Mt function, which is the protien neccesary in detoxing mercury..it basically becomes disabled and needs to be restored. I found a good article on one of the autism websites I'll look it up and post it. Best of luck!!! Jennifer

Jean, Just wondering what method the Dr. used to test for heavy metals? We did a hair analysis a couple of years ago that showed high levels, but I have since read that they may not always be accurate because if the body is not excreting it wouldn't show...at the same time I've read that it reflects the tissue stores...I'm a little confused on that one, however, we just did the DMSA challenge test which is more accurate than just relying on hair. Maybe that is the one you did, but I just wanted to pass the hair analysis info. on. Jennifer

Hi All, A friend of mine just downloaded and printed out a 145 page book by Willis Langford called "Managing Autism" just the little bit she has told me has got me very excited. Even though it is about autism the issues he discusses are the same ones we deal with (in autism they are just more severe). From my understanding he is not actually a doctor, she couldn't remember what his title is, but he speaks at the conventions and helps many doctors and families. I just downloaded the info. and by glancing at the index he has chapters on digestion, yeast, mercury, serotonin, gaba etc...pretty much all the things we talk about on this forum. He even offers an explanation on red ears and cheeks. I don't know if anyone else experiences this, but I've noticed tht one of my son's ears will turn beat red right out of the blue. He talks about the various detoxification pathways and how some of them are non functional...the body does not eliminate properly and cautions against the use of certain herbs if certain detox pathways are down. Just by glancing at the index you'll see what a large variety of issues he deals with. He also has a chapter on fatty acids. I don't know if the book can be ordered, but if it can't it is well worth the ink!!! Here it is: http://www.platotime.com/sensikit/KickStart.doc Jennifer

Claire, Unless the "room temp" is very warm you are probably o.k. That is an interesting article about yeast and tics/ocd. We did a CDSA on our son, but I have read that yeast can perforate the digestive tract and leak out...I think I'm going to ask the doctor for a blood test to rule that out even if the stool test comes back negative. Jennifer

I personally haven't noticed any correlation between chocolate and tics with our son, but I have also switched to organic cocoa and chocolate bars. While caffeine and sugar may certainly be an issue I often wonder if the chemicals used to process cocoa may not be an even larger factor. Jennifer

efgh, We just sent in ou CSDA test in last week, but it was not Great Smokies, the doctor uses a local lab for that one. Today we do the DMSA challenge test to see what heavy metals come out. Our doctor really thinks that mercury is the culprit with our son. Hope you get some good answers for your son!! Jennifer

Claire, I, like you was very nervous about watching "The Passion", but I am so glad that we did. I think it has been a life changing experience for us. I appreciate what God has done for us so much more and realize that compared to what Jesus went through for our sakes, our trials are minimal. The deep love that God has for us is amazing. Reading about Christ's sacrifice in the bible is so different from having a visual of what happened. The movie moved me greatly and made me realize that we need to live first for God and he will show us the way and guide us in our everyday trials. Jennifer

I couldn't agree with you all more. I know God has his hand in all of this. How else would we find the physical and emotional strength to deal with it all? I rely very much on God to guide me and strengthen me and support our son's physical and emotional trials. Jennifer

Claire and Chemar, Thanks for your kind responses. I feel better today. I've had a couple of days to let all the info. sink in and adjust my attititude. I started our son on 5htp again, in the past he took 50mg. every night (per recomendation of one of the doctors we went to see locally) from what I have read I think that may have been too much for him........his moods were great, but it had the effect of making him feel wired. Last night I gave him 50mg to get it in his system and from now on I'll cut the dose in half. He was in a much better mood today, not sure if it was the 5htp, but I kind of think it was. Jennifer

efgh, The blood chemistry panel is what revealed the problems. I'm not exactly sure what the markers are, but things like albumin, B.U.N and some others are kidney and liver proteins...if they are low, that generally indicates that they are not functioning optimally. This was the test that we did through our doctor locally , the new doctor has not seen them yet and we won't meet with him until the 2nd of April. I will, however, get some bicarbonate that Body Bio recommended to counteract the ammonia in his system. Ammonia is a neurotoxin and can even cause seizures if too high. They also recommend butyrate (which is in butter) to counteract ammonia. Ammonia is one of the things that Dr. McCAndless checks for, it seems to be a very common problem. I just read something very interesting in the body bio report, 95% of our serotonin is manufactured in the bowel. I had never heard that before. Jennifer

Heather, Thanks for the NDf info. I'll look into that. By the way a friend of mine who ws interested in ordering Dr. MCandless' book says that she is in the middle of writing another one. I don't know if it is a 3rd edition or something else. I hope your son feels better. The food thing is really hard, they have enough to deal with and then have to be different because of the food on top of everything else! Take care, Jennifer

Hi all, Just met with our local doc today re: the Body bio tests. His fatty acids are within normal range, however, something in the test indicated an impairment of his body to utilize them. He is not breaking down protein, has impaired oxygenation, high ammonia levels, viral presence, liver and kidney not functioning optimally and through some things like albumin and Bun (I think, I can't remember) they can tell that he may not have enough serotonin which is not a big surprise and sulfation is an issue. Seems to be the typical imbalances found in ASD children. There were other things too, but I can't remember it all. I know that I was really looking forward to these test, but I feel a bit overwhelmed tonight. I guess you always hope that some things won't be an issue. We meet with the new doctor April, 2nd so I'll know more then. I'll keep you posted as new things come to light. Jennifer

Dear Gina, I am so sorry about your experience. I know that this is a free country, but if you feel like it perhaps you should complain to the ARI about this doctor...it sounds like he's trying to take advantage of desperate parents....not a moral thing to do. We have been to a DAN doctor and so far his fees have been within reason and he will carry the balance with no finance charge as long as we pay 10% of the bill every month. A good resource would be to purchase "Children with Starving Brains" by Dr. Jaqueline McCandless who is an awesome doctor. She spells out the treatment and lab tests in a very organized manner. There is alot you can do on your own, but eventually you will have to find a doctor who is agreeable to the testing. A naturpath would be your best bet. It's alot of work, but with that link the Chemar gave you perhaps you could call the various doctors and ask them what their protocol is. Best of Luck, Jennifer

Chemar, How much inositol are you giving your son? I've been giving our 8 yr old about 300mg. per day. I've read conflicting things. One article from Dr. Walsh differentiates between merely supplementing with it and administering therapeutic amounts for OCD- I can't remember, but I think he recommends at least 500 mg. while some other info. I read cautioned using amounts above 300 mg. Just wondering what you know about it. I haven't given our son any supplements for about 2 weeks. I wanted to see how his body would do on it's own. He is back to being irrational, moody and throwing temper tantrums the OCD is getting worse too. All the supplements have benefited him tremendously, but even when on the supplements his OCD is not that much improved. Jennifer

efgh, Many children with Autism or Aspergers also suffer from tic disorders. Many of the symptoms overlap. In high functioning cases of Aspergers an accurate diagnosis may not be evident until later. I brought my son in when he was 3 to my pediatrician with some concerns I had, but everything was chalked up to "normal childhood development". Also if the problem is vaccine induced, booster shots which they normally get caught up on when they are 5, may be the straw that breaks the camel's back , in which case you may not see the full consequences until a year or two down the road as happend in our case. The list your friend sent you sounds like more like Asperger's to me. That's not to say that a child with Asperger's may not also suffer from a full blown case of tics. Between the two the tics are probably what stand out more and so the child gets the diagnosis of Tourett's Syndrome when in fact there is a lot more going on. I don't know if you read it yet, but I did post alot of the symptoms we see in our son under the DAN doctor visit thread. Jennifer

Chemar, Thanks for posting the article on Brain Talk. I agree with you completely...people need to know the truth. Jennifer

This is a must read article!!!!! CDC Vaccine Data Leads Scientists to Shocking Discovery http://biz.yahoo.com/prnews/040209/nem019_1.html Jennifer

efgh, I personally have used Carlson's fish oil. Just so you, know if you log onto www.vitaminshoppe.com you can get all kinds of supplements at a good discount anything over 50$ is free shipping. They have all kinds of brands. I discovered that they've got floradix supplements (they have a good cal/mag) they also have Carlson's Fish oil. I found a liquid B from Twin Labs that has b-3, b-6, b-12, paba, choline and inositol. I'm not sure what the flavor is like. Jennifer

Marretts, Thanks for the book info. I've been looking for a good book on Aspergers. efgh, Our son's thyoid is overactive (hyperthyroid) . He doesn't get tired easily at all he has plenty of energy to spare. As far as the Apergers goes, he has a one track mind. He is very intelligent, but only seems to be interested in talking about what he wants to talk about...there isn't really an "exchange". He could have a friend come up to him and start talking about a movie he saw and if he just read a book on tarantulas he would totally start talking about tarantulas and not really acknowledge the other person. When he was much younger he was obsessive about certain play themes and if no one else was interested he would go off and play by himself. He lives in his own little world. He is very clumsy and can't seem to absorb what is going on around him. He has litteraly bumped into people before and not even noticed. A lot of the times when someone greets him I have to prod him to answer because he doesn't "hear" them. He is overly sensitive about the way someone treats him, he doesn't handle conflict very well and he doesn't understand that something he is doing is bothering someone until the other person gets really mad. Many of his problems are on a social level which is much of what Aspergers is about. My 3 year old is completely different. He only had 2 rounds of vaccines and has never had his MMR. He is extremely perceptive, empathetic social and has pretty good conflict resolving skills for his age. No difference in environement or parenting. My 8 yr old was alot like my youngest when he was 2 then at about 2 1/2 everything started spiraling down hill. As far as his tics go he had one motor tic that has come back. He takes a few steps and then spins around, but this is nothing compared to what he was dealing with before. Heather, Thank you for your kind words. It is great to have a forum like this. We are definately not alone! Jennifer

Heather, Our Doctor didn't really address any of the protocol issues with us. He simply wrote every single thing down that I told him and in about a month we'll meet with him again to discuss of the test results and protocol we should follow. He uses the DMPS and Captomer for the initial heavy metal provoking agents for the urine test. As far as the thyroid symptoms go (his thyroid is overactive) he is hot all the time. Never wears P.j.'s he just sleeps in his underwear and he still on top of all that sweats at night. He is extremely irritable and short tempered and he eats non stop...literally! Yet he is thin...healthy looking, but certainly thin. As far as Dr. McCandless's book goes she has a first and second edition, I would go with the second edition as it has a little more info. in it. She also has a website with some great articles and this is where she posts the latest news. http://www.autism-rxguidebook.net I may have allready mentioned this, but when she was a guest on the Latitudes forum I had the wonderful opportunity of asking her some questions. As far as Tourett's and tic disorders go she said that they are on the ASD spectrum and she would follow the same protocol as she does with autism. Jennifer

Hi All, Just got back Sunday from the visit to the DAN doctor. On Friday we had a consultation that lasted about 2 hrs then we went back on Saturday for our son's actual exam. We had some blood drawn to determine his blood type, CBC and allergy tests. They sent us home with a stool test kit which will show us if he is digesting and assimilating food and yeast(he has to eat from all the food groups 3x's a day for 3 days prior to collecting the sample.) Then he gave us charcoal capsules he has to swallow and record how long it took for them to come through- which also indicates how efficiently the digestive tract is working. Then last, but not least we will be doing a heavy metal urine challenge test using DMPS and Captomer and a fasting amino acid test. Based on the symptoms we provided and observation he feels that our son is dealing with high functioning Aspergers disorder- which is a very high functioning form of autism. I kind of thought that this might be the case. He doesn't fit the extreme's of the symptoms, but in a mild form he does. Children with Asperger's tend to be highly intelligent, but extremely focused or obsessive regarding their interests..making things a bit difficult for them socially and a tic disorder can be manifest as well. People with Asperger's lead very normal lives. but tend to be perceived as quirky or eccentric by people. The doctor has high hopes, however, that our son will make a complete recovery. The doctor didn't give me any kind of protocol- he is waiting for all the test results to come back. We have a phone appointment for the 27th of March during whch he'll go over all the results and plan of attack. During our visit though he expressed the feeling that we are probably dealing with mercury issues (alot of the symptoms my son has indicate impaired detoxification). His thyroid is not functioning correctly, it is high. The same test results our doc here in town interpreted as normal were in fact high- the lab did not use pediatric reference ranges...big difference!! We are going to work on heavy metal and digestive/allergy issues and if we don't see some big reults we will do some viral testing. The MMR is a live virus and can be a big factor in neuro. problems. Dr. McCandless has a special panel called the McCandless panel that she has done through Dr. Ari Vojdani whom has been a guest in the Latitudes newsletter. Dr. McCandless feels that viral problems can be a big issue with tic disorders. Also the doctor told us that one of the reasons why symptoms wax and wane as they do is for the simple fact that kids are growing...their metabolisms change as do their nutritional needs, I found that to be very interesting. I feel so much better now that we're in the hands of someone who actually understands these issues. I'll still continue to do my own research , but I don't feel like I'm on this desperate mission anymore..I feel a sense of calm. Once we get the results back I'll let you all know. The fatty acid one should be back in another couple of weeks. Jennifer

I think there is some confusion regarding tic disorders. "Tourette Syndrome" is infact a genetic disorder. Tic disorders are not. The trick would be establishing whether or not it is a genetic cause. I'm not sure, but there may be some tests. Just like with autism. Some cases are genetic- they test for the fragile x chromosome while the other cases seem to be vaccine injury or environmental exposure to toxins. We've never pursued having our son tested for a genetic link because no one in our family has ever had anything like this. It is also interesting how most children suffering from this disorder are boys. I read an interesting study once involving rats. The male and female rats were injected with the same amount of toxins, (I think it may have been mercury) but, the male rats were the ones who were most affected. One possible reason they came to the conclusion to was estrogen. It seems that estrogen has some protective properties to it. And boys obviously don't have the same levels which would leave them more susceptible to injury. I don't know how true this is, but I thought it was interesting. As far as the body bio test goes, our doc. started up an account with them and ordered a test kit. Their blood chemistry pael asks for several more tests than the standard ones seem too. We should get the fatty acid one back around the beginning of March. They could tell, however, just from the blood chemistry that he needs unlimited amounts of omega 6 and 3- so he must be really low. Jennifer