Guest guest Posted September 9, 2010 Report Share Posted September 9, 2010 My sons not severe, but the woman who convinced me to try AC protocol, has a son who was non-verbal and diagnosed as severly autistic. He was diagnosed at 2. They started chelating, using AC protocol when he was 6. Started speaking after about 60 rounds. They've done about 150 rounds and his diagnosis was upgraded by UCLA Autism Eval Clinic to moderately autistic. Karla > > Hi, > > I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of A/C and had little progress. > > Just wondering if there are many people out there who've managed to improve children of this age from being non verbal (sever ASD) to being verbal and on the milder end of ASD? > > Please no replies from those who never had a sever kid to begin with! > > Thank you > B > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 My soon-to-be 10 yr old daughter was diagnosed at 3 with Severe Autism. Another doctor said that she may also be MR because an IQ Test was 40. (IQ Tests for non-verbal kids is another topic!  ) Language was gone at 3; echoics came and went until 5; a couple of words came between 5-6; any small gains left again at 6 1/2 (car accident with trauma to the mouth and amalgam fillings); fillings removed at 7 and started GFCF, got some mumblings and pointing; started AC protocol at 8, will be on round 64 this weekend,  my daughter speaks in 3 to 4 word sentences (I sporadically have to do some prompting), has sporadic outbursts of longer sentences, is learning to read, can finally write, is not completely age appropriate yet for her age (the areas vary, she started out on the level of a 12-18 month old across the board; she's now between 4-7 yr old). My goal is to do 200 rounds. The things that help us is AC protocol, Parasite Cleanse and controlling yeast (for us, yeast did not decrease gains, she continued to make gains in spite of yeast. However, yeast was/is a big factor when it comes to behavior.) Hope this helps S. > >From: Brighid <brighid@...> > >Sent: Fri, September 10, 2010 12:12:31 AM >Subject: [ ] Non Verbal kids > > >Hi, > >I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of >A/C and had little progress. > >Just wondering if there are many people out there who've managed to improve >children of this age from being non verbal (sever ASD) to being verbal and on >the milder end of ASD? > >Please no replies from those who never had a sever kid to begin with! > >Thank you >B > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 Thank you Karla, I appreciate your reply very much. This gives me great hope. Thank you B > > > > Hi, > > > > I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of A/C and had little progress. > > > > Just wondering if there are many people out there who've managed to improve children of this age from being non verbal (sever ASD) to being verbal and on the milder end of ASD? > > > > Please no replies from those who never had a sever kid to begin with! > > > > Thank you > > B > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 Thank you , I really appreciate you taking the time to reply to me. You have given me much hope!! I hope your journey continues to bring great improvements, and that we are lucky enough to see this kind of progress for our daughter. Thank you B > > My soon-to-be 10 yr old daughter was diagnosed at 3 with Severe Autism. Another > doctor said that she may also be MR because an IQ Test was 40. (IQ Tests for > non-verbal kids is another topic!  ) Language was gone at 3; echoics came and > went until 5; a couple of words came between 5-6; any small gains left again at > 6 1/2 (car accident with trauma to the mouth and amalgam fillings); fillings > removed at 7 and started GFCF, got some mumblings and pointing; started AC > protocol at 8, will be on round 64 this weekend,  my daughter speaks in 3 to > 4 word sentences (I sporadically have to do some prompting), has sporadic > outbursts of longer sentences, is learning to read, can finally write, is not > completely age appropriate yet for her age (the areas vary, she started out on > the level of a 12-18 month old across the board; she's now between 4-7 yr old). > > My goal is to do 200 rounds. > > The things that help us is AC protocol, Parasite Cleanse and controlling yeast > (for us, yeast did not decrease gains, she continued to make gains in spite of > yeast. However, yeast was/is a big factor when it comes to behavior.) > > Hope this helps S. > > > > > >From: Brighid <brighid@...> > > > >Sent: Fri, September 10, 2010 12:12:31 AM > >Subject: [ ] Non Verbal kids > > > > > >Hi, > > > >I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of > >A/C and had little progress. > > > >Just wondering if there are many people out there who've managed to improve > >children of this age from being non verbal (sever ASD) to being verbal and on > >the milder end of ASD? > > > >Please no replies from those who never had a sever kid to begin with! > > > >Thank you > >B > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 > I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of A/C and had little progress. My son has a dx of " classic Kanner's autism, severe, low functioning " . The pedneuro who dx him, told me he would never talk or even acknowledge my existence. He said his first word at age 6, after I added digestive enzymes. The things he needed the most for speech, were enzymes, ALA chelation, anti-virals, B vitamins especially B1 and B12, and anti-fungals. There were several other supps that were also helpful. Today he is 14 and not yet age-appropriate, but sometimes I do need to tell him to be quiet because he is talking too much. Good luck. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 My guy lost all language after MMR reaction and did not speak until 7 yrs old. Diet #1 Kirkman liq B-12 w Folinic helped speech immensely High Vitamin A protocol restored eye contact, reduced stims AC Chelation ALA diminishing remaining symptoms Son now 14 giving speeches, writing stories, getting social. We were told by Dr Ritvo at UCLA to research long term assisted living, he would never speak yada yada... > > I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of A/C and had little progress. > > > My son has a dx of " classic Kanner's autism, severe, low functioning " . The pedneuro who dx him, told me he would never talk or even acknowledge my existence. > > He said his first word at age 6, after I added digestive enzymes. > > The things he needed the most for speech, were enzymes, ALA chelation, anti-virals, B vitamins especially B1 and B12, and anti-fungals. There were several other supps that were also helpful. > > Today he is 14 and not yet age-appropriate, but sometimes I do need to tell him to be quiet because he is talking too much. > > Good luck. > > Dana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 What is high Vitamin A protocol? _____ From: [mailto: ] On Behalf Of rwb000 Sent: Friday, September 10, 2010 7:43 AM Subject: [ ] Re: Non Verbal kids My guy lost all language after MMR reaction and did not speak until 7 yrs old. Diet #1 Kirkman liq B-12 w Folinic helped speech immensely High Vitamin A protocol restored eye contact, reduced stims AC Chelation ALA diminishing remaining symptoms Son now 14 giving speeches, writing stories, getting social. We were told by Dr Ritvo at UCLA to research long term assisted living, he would never speak yada yada... > > I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of A/C and had little progress. > > > My son has a dx of " classic Kanner's autism, severe, low functioning " . The pedneuro who dx him, told me he would never talk or even acknowledge my existence. > > He said his first word at age 6, after I added digestive enzymes. > > The things he needed the most for speech, were enzymes, ALA chelation, anti-virals, B vitamins especially B1 and B12, and anti-fungals. There were several other supps that were also helpful. > > Today he is 14 and not yet age-appropriate, but sometimes I do need to tell him to be quiet because he is talking too much. > > Good luck. > > Dana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 My son is a non verbal kid (a bit over 7 years old). My son has experienced swollen areas around his eyes and had a swollen ear and a red mark in his arm during low dosage rounds. After we moved onto a large dosage regime, side effects have disappeared. Also be careful with mineral supplements that stirred up mercury in my son's body. > > Hi, > > I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of A/C and had little progress. > > Just wondering if there are many people out there who've managed to improve children of this age from being non verbal (sever ASD) to being verbal and on the milder end of ASD? > > Please no replies from those who never had a sever kid to begin with! > > Thank you > B > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 My youngest boy was on the severe side, non-verbal. We started him on AC protocol chelation at three years old. - He started making physical improvements first, like sleeping at night. - Then he was able to control his emotions a little better. - He started having a few words, but not actually stringing them together or communicating. - After about a year he started using words appropriately, like " I want juice " or " I need help " He is now considered " Moderate " and still improving. He is able to go to preschool and follow the class routine after a couple of weeks of getting used to it. I would suggest taking the ATEC test and getting a score, then taking it every 10 rounds or so. Improvement is hard to see sometimeswhen you are with your child every day. Andy suggests a video diary. Take 30 minutes of video of your child every six months and compare. It's very easy to give up on chelation because you can't tell your child is improving, even though they are. TJ ________________________________ From: Brighid <brighid@...> Sent: Thu, September 9, 2010 9:12:31 PM Subject: [ ] Non Verbal kids  Hi, I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of A/C and had little progress. Just wondering if there are many people out there who've managed to improve children of this age from being non verbal (sever ASD) to being verbal and on the milder end of ASD? Please no replies from those who never had a sever kid to begin with! Thank you B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 My son was diagnosed moderate/severe, and I know it was more on the severe side as he was often non-responsive (catatonic). He lost all speech. His sleep and behavior were disastrous. He also had OCD. We could not chelate for many years due to his low neutrophil count. Speech returned using diet (gf/cf/sf) very strict adherence to diet. We did supplementation, and I believe the Acetyl-L-Carnitine helped the most with speech. But what really was the impetus was that when he came down with his first bout of pneumonia, he was given IM broad spectrum antibiotics for two days followed by ten days of Omnicef. On the fourth day of treatment, my son sat up and said every word he had known befor regression. I r4esearched and found studies of using vancomycin in ASD kids and this producing imporvement, but it stated that once they were taken off the vancomycin, then they regressed back to base-line. You might discuss with a doctor a trial of Vancomycin to see. All children are different, and my son has always gotten better when on antibiotics (thought it is a push pull because then there comes the yeast problem. My son has had to be on antibiotics often due to chronic infections: bronchitis, pneumonia, strep, and staph. Until we can somehow heal his immune system, I can't let staph ravage his body. I was heart-sick about that, but my son did not regress to base-line and retained some speech, and I built on that. This proved to me there was some kind of bacterial interference with what he needed to do to speak. My son was young when this occurred, but for you I wouldn't give up hope. I have heard of some ASD adults using speech for the first time after good interventions. Acetyl-L-Carnitine has some good research from Berkley to show it has a propensity to repair cells at a mitochondrial level. When ALC and ALA are used in combination, Berkley reported amazing results. You might want to see what Andy thinks of this idea. Please note, I worked with my son constantly on speech. I took every opportunity to talk to him. When we were in the car I pointed out all the business signs to him along the way. Hopefully you have had her copper/zinc ratio checked. My son's copper was very high at that time. High copper can cause permanent damage to areas of the body, especially the brain. My son was on the severe side, though on the line (moderate/severe). from my perspective it was bade as we could not go anywhere --even the store. I used to RUN through to get just what I needed and get out. We did a form of chelation that I would not recommend. We will start up again with the AC protocol. Chelation helped in ways, but doing it IV caused reactions, so I would never risk that again. Today, my son is very verbal. He regained receptive, expressive, and in the last year developed reciprocal speech. Never lose hope and keep trying. I strongly recommend the AC protocol, and I wish I had listened to ANdy in the beginning and not wasted my time and money on IV chelation. The reactions my son had were frightening, and I am thankful nothing worse happened and he got through it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 What amounts of l carnitine helped with language? From: Haven DeLay <hdelay@...> Subject: Re: [ ] Non Verbal kids Date: Friday, September 10, 2010, 5:43 PM Â My son was diagnosed moderate/severe, and I know it was more on the severe side as he was often non-responsive (catatonic). He lost all speech. His sleep and behavior were disastrous. He also had OCD. We could not chelate for many years due to his low neutrophil count. Speech returned using diet (gf/cf/sf) very strict adherence to diet. We did supplementation, and I believe the Acetyl-L-Carnitine helped the most with speech. But what really was the impetus was that when he came down with his first bout of pneumonia, he was given IM broad spectrum antibiotics for two days followed by ten days of Omnicef. On the fourth day of treatment, my son sat up and said every word he had known befor regression. I r4esearched and found studies of using vancomycin in ASD kids and this producing imporvement, but it stated that once they were taken off the vancomycin, then they regressed back to base-line. You might discuss with a doctor a trial of Vancomycin to see. All children are different, and my son has always gotten better when on antibiotics (thought it is a push pull because then there comes the yeast problem. My son has had to be on antibiotics often due to chronic infections: bronchitis, pneumonia, strep, and staph. Until we can somehow heal his immune system, I can't let staph ravage his body. I was heart-sick about that, but my son did not regress to base-line and retained some speech, and I built on that. This proved to me there was some kind of bacterial interference with what he needed to do to speak. My son was young when this occurred, but for you I wouldn't give up hope. I have heard of some ASD adults using speech for the first time after good interventions. Acetyl-L-Carnitine has some good research from Berkley to show it has a propensity to repair cells at a mitochondrial level. When ALC and ALA are used in combination, Berkley reported amazing results. You might want to see what Andy thinks of this idea. Please note, I worked with my son constantly on speech. I took every opportunity to talk to him. When we were in the car I pointed out all the business signs to him along the way. Hopefully you have had her copper/zinc ratio checked. My son's copper was very high at that time. High copper can cause permanent damage to areas of the body, especially the brain. My son was on the severe side, though on the line (moderate/severe). from my perspective it was bade as we could not go anywhere --even the store. I used to RUN through to get just what I needed and get out. We did a form of chelation that I would not recommend. We will start up again with the AC protocol. Chelation helped in ways, but doing it IV caused reactions, so I would never risk that again. Today, my son is very verbal. He regained receptive, expressive, and in the last year developed reciprocal speech. Never lose hope and keep trying. I strongly recommend the AC protocol, and I wish I had listened to ANdy in the beginning and not wasted my time and money on IV chelation. The reactions my son had were frightening, and I am thankful nothing worse happened and he got through it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 Has she ever had an EEG to look for abnormal electrical activity in the brain? Might be worth ruling that out as sometimes kids who have this, don't seem to make as many strides in verbal gains despite chelation. Jan > > Hi, > > I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of A/C and had little progress. > > Just wondering if there are many people out there who've managed to improve children of this age from being non verbal (sever ASD) to being verbal and on the milder end of ASD? > > Please no replies from those who never had a sever kid to begin with! > > Thank you > B > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 Talk to your child's doctor (one familiar with regressive, vaccine triggered autism) to get the correct dose for your child. We started with 500 mg a day divided in two doses. We eventually went up to a thousand in two doses (500 in the morning and 500 at night). Our doc said we could go as high as 1500 but our son is a BIG kid. It would depend on the weight of your child. consult your physician or go to www.kirkmanlabs.com and look it up there and it will give you dosing information. ALC can help with a lot of things. I started taking it too, and it makes me feel younger and more energetic. UC Berkley did a study that was written about in an article of Reader's Digest years ago. You might be able to find it in their archives, but they simplified it this way: they gave very old mice ALC and over time, the very old mice began to act like middle-aged mice. Then they added ALA along with the ALC and over time the very old mice who acted like middle aged mice behaved even younger --the practically stood up and did the Macarena! This is just the way they explained it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2010 Report Share Posted September 11, 2010 Thank you everyone who replied to this. It has given me great hope to keep pressing forward. I appreciate you taking the time to reply. Jan, yes we have had an EEG done some years ago, and nothing of interest showed up. For now I think we'll just keep pressing on with a/c chelation and hope and pray for some more progress. Thank you B > > > > Hi, > > > > I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of A/C and had little progress. > > > > Just wondering if there are many people out there who've managed to improve children of this age from being non verbal (sever ASD) to being verbal and on the milder end of ASD? > > > > Please no replies from those who never had a sever kid to begin with! > > > > Thank you > > B > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2010 Report Share Posted September 11, 2010 Keep on trying. There were many times when we reached a plateau and many times we had to take a little " break " and step back and look at what we were doing, and devise a better plan. I will tell you something we've done lately that has produced amazing results: we gave ten-day notice and removed him from public school, and WOW! His " stimming " has already decreased by fifty percent. He is already showing come confidence! His RPM tutor was amazed by his level of confidence and his lessened anxiety yesterday. He had a great session. My husband also noticed the change. He has become very animated. He is asking a lot of questions from everybody. I just haven't seen him look this good since I home-schooled him for a year in the pre-school years. I'm starting to believe that any placement for an ASD child in the public setting may just be too overwhelming. I'm starting to think that no public school has a proper " placement " at this time for an ASD child. I think my son's lack of confidence, anxiety, and " stimming " were all signs that he was having difficulty coping with the environment. I am so excited about this year! We will see how he does. Look at all the supplementation you are doing, and then ask why you are doing it. Is it working? The only supplementation I have never questioned are C,D3, magnesium, selenium, zinc, calcium, E, multi-vitamn/mineral, ALC, fish oil, probiotics, flax (EFA powder), Epsom salt baths, and the gf/cf/sf diet, and enzymes. These things I have always seen some benefit from. We did B12 for over a year, and then it made our son hyper and vorasciously hungry, so we stopped. Super Nuthera he was never able to tolerate. For a while DMG or TMG and then we saw no real change, so we stopped. Our son is also on nystantin again, but I want to try OLE or another natural yeast fighter. Step back and look at what you are doing. Chelation is vital, too. I wouldn't ever do it again unless it were the AC protocol. Since my son is already on ALC, I am interested to see what the addition of ALA chelation protocol can do. But my son's main issue now lies in his immune system, which means the gut. There I know I haven't done enough, so we are looking at the Body Ecology Diet. One has to get oneself " siked " up for a new game. Right now I am just trying to get his home program running smoothly and then we will work on diet again. The other great thing is that when we took him out of public school he was starting to get sick AGAIN, but when he didn't go back there, the illness didn't snow ball like it usually does and we haven't had to put him back on steroids. Yea! You hang in there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2010 Report Share Posted September 11, 2010 > What is high Vitamin A protocol? Info here http://www.danasview.net/vitamina.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2010 Report Share Posted September 11, 2010 Hi B and All, Communicate (Understand, and deliver from what you understand?) to teach language, (and Understanding) and don't be surprised with what language and individual you get in that respect I find most people do it the other way around (force language for communication, of whatever communication and understanding that would be?) and are " abusive " (and get it wrong) in that regard.. . Oh, don't worry I *am* taking it that seriously (of Justness, Thereof, that anything else should be so meaningful Best wishes. It might be helpful to suggest/say that you accept what you get in that respect, for all that you get and can get by as much Glavic On as much, as I *Do* Get.. . from trying so hard ( Do The analysis for your self.. Life shouldn't be so much a *language* class, otherwise, I Feel as understand > > Hi, > > I've got a mostly non verbal daughter who's nearly 7, we've done 28 rounds of A/C and had little progress. > > Just wondering if there are many people out there who've managed to improve children of this age from being non verbal (sever ASD) to being verbal and on the milder end of ASD? > > Please no replies from those who never had a sever kid to begin with! > > Thank you > B > Quote Link to comment Share on other sites More sharing options...
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