Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 Cristel, I have been following your posts on PANDAS over the past 6 months and they have been helpful. The reason we are not treating PANDAS right now with antibiotics is that my son can no longer tolerate them! He got really screwed up in Dec. after very high dose zithromax (and this was after 5 months of antibiotics) and we still haven't gotten him back. Still don't quite know what happened but I have a few theories. One is that he reached a toxicity level for zithromax. The other is that his gut was so screwed up that we hardly recognized him anymore. We had an OAT test done since then and he is high for yeast markers and also hippuric acid (bacteria). If you remember, back in Dec. the DAN put my son on Cipro for the bacteria (this was shortly after the zithro) and it just seemed to make matters worse. We are now concentrating on increasing his probiotics slowly to 250 bill cfu's per day and I also added Biocidin yesterday to address the many issues that he has going on (yeast, bacteria, strep, maybe viruses). I am hoping that Biocidin will help to get him back on track and then we can go from there and figure out what to do next... I know you have used OLE and I may try that eventually (I have it on hand)... I also keep hearing about LDN and may want to pursue that as well. Thanks, > > > > > Hi everyone, I'm fairly new to the group and don't really post much > > > because I just started my 5 yo son on biomeds a few weeks ago. Haven't > > > reached the hard stuff yet. However, I'd like to know what exactly > > > does " recovery " mean to us. In terms of our kids and all these meds > > > they take to get there. Does that mean that they keep on taking most, > > > all or some of these meds for life? Or just until they need them, do > > > they have to be tested every 6 months to check their levels? Will > > > they regress after some of the meds are stopped? I've watched Stan's > > > videos with his son and many others on the web in tears to think that > > > my son could possibly talk one day. I'm shooting for recovery, but I > > > can't expect it because I'm afraid that I won't get there. If anyone > > > can take a few minutes to paint me a picture (even if it's not pretty) > > > I'd appreciate it. Thanks everyone. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 Cristel, I have been following your posts on PANDAS over the past 6 months and they have been helpful. The reason we are not treating PANDAS right now with antibiotics is that my son can no longer tolerate them! He got really screwed up in Dec. after very high dose zithromax (and this was after 5 months of antibiotics) and we still haven't gotten him back. Still don't quite know what happened but I have a few theories. One is that he reached a toxicity level for zithromax. The other is that his gut was so screwed up that we hardly recognized him anymore. We had an OAT test done since then and he is high for yeast markers and also hippuric acid (bacteria). If you remember, back in Dec. the DAN put my son on Cipro for the bacteria (this was shortly after the zithro) and it just seemed to make matters worse. We are now concentrating on increasing his probiotics slowly to 250 bill cfu's per day and I also added Biocidin yesterday to address the many issues that he has going on (yeast, bacteria, strep, maybe viruses). I am hoping that Biocidin will help to get him back on track and then we can go from there and figure out what to do next... I know you have used OLE and I may try that eventually (I have it on hand)... I also keep hearing about LDN and may want to pursue that as well. Thanks, > > > > > Hi everyone, I'm fairly new to the group and don't really post much > > > because I just started my 5 yo son on biomeds a few weeks ago. Haven't > > > reached the hard stuff yet. However, I'd like to know what exactly > > > does " recovery " mean to us. In terms of our kids and all these meds > > > they take to get there. Does that mean that they keep on taking most, > > > all or some of these meds for life? Or just until they need them, do > > > they have to be tested every 6 months to check their levels? Will > > > they regress after some of the meds are stopped? I've watched Stan's > > > videos with his son and many others on the web in tears to think that > > > my son could possibly talk one day. I'm shooting for recovery, but I > > > can't expect it because I'm afraid that I won't get there. If anyone > > > can take a few minutes to paint me a picture (even if it's not pretty) > > > I'd appreciate it. Thanks everyone. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 Oh and yes we have done fluconizole and nystatin with the antibiotics...doesn't matter we just go round and round with the microbes... > > > > > Hi everyone, I'm fairly new to the group and don't really post much > > > because I just started my 5 yo son on biomeds a few weeks ago. Haven't > > > reached the hard stuff yet. However, I'd like to know what exactly > > > does " recovery " mean to us. In terms of our kids and all these meds > > > they take to get there. Does that mean that they keep on taking most, > > > all or some of these meds for life? Or just until they need them, do > > > they have to be tested every 6 months to check their levels? Will > > > they regress after some of the meds are stopped? I've watched Stan's > > > videos with his son and many others on the web in tears to think that > > > my son could possibly talk one day. I'm shooting for recovery, but I > > > can't expect it because I'm afraid that I won't get there. If anyone > > > can take a few minutes to paint me a picture (even if it's not pretty) > > > I'd appreciate it. Thanks everyone. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 I don't know alot about pandas, but I was wondering if you might be able to do body ecology diet? I just started coconut kefir and it seems to be helping already. Just seems like a very good way to start getting good flora back in the gut. The bacteria called Lactobacillous Plantarum is suppose to be a very good one for helping to heal. Maybe you could also look into LDM-100? I just ordered that as well. I am currently dealing with strep in the gut. Our Dr. is trying to stay away from antibiotics. Good Luck!! To: mb12 valtrex Sent: Tue, February 2, 2010 11:15:53 PMSubject: Re: Recovery Oh and yes we have done fluconizole and nystatin with the antibiotics. ..doesn't matter we just go round and round with the microbes...> > > > > Hi everyone, I'm fairly new to the group and don't really post much> > > because I just started my 5 yo son on biomeds a few weeks ago. Haven't> > > reached the hard stuff yet. However, I'd like to know what exactly> > > does "recovery" mean to us. In terms of our kids and all these meds> > > they take to get there. Does that mean that they keep on taking most,> > > all or some of these meds for life? Or just until they need them, do> > > they have to be tested every 6 months to check their levels? Will> > > they regress after some of the meds are stopped? I've watched Stan's> > > videos with his son and many others on the web in tears to think that> > > my son could possibly talk one day. I'm shooting for recovery, but I> > > can't expect it because I'm afraid that I won't get there. If anyone> > > can take a few minutes to paint me a picture (even if it's not pretty)> > > I'd appreciate it. Thanks everyone.> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Sorry it took me so long to answer your questions about ’s recovery from autism. We are in the process of trying to put our house on the market and there are so many things to do that really aren’t as important as answering your questions. Our children all have something in common. Their immune systems are not functioning properly. Kids like my son, , have shown that if their medical problems can be corrected and they are taught what they missed, they can lead happy normal lives. I am so sad when I read about what all of you face daily. I relive all the pain I felt when I didn’t know if he would ever be okay. I remember screaming and swearing at the top of my lungs in the car ride home from the psychiatrist's office after he was first diagnosed. In the beginning it was almost as if my son had died, because I lost all my dreams and hopes for my child. I remember not wanting to get up and face another day of therapy and special diets. I remember feeling so scared and alone. I had no one to talk to who understood. I couldn't even discuss things with my husband because he was hurting as much as I was. It was a miracle our marriage survived this hell. There was no internet back when we were going through this and not much in terms of any treatment. Mainstream doctors and psychiatrists did not believe these kids could get better. They had nothing to give us not even hope. Eventually, my son did get better as a result of a combination of Dr. Goldberg’s medical treatment and ABA. Here is a link to the videos on U tube of three of Dr. G’s recovered kids? There are hundreds out there. My is among the three kids shown http://www.youtube.com/watch?v=iGuSVBVEU3I http://www.youtube.com/watch?v=KLhn1yfFh_g & feature=related Here is the latest retrovirus research XMRV Retrovirus Research Discovery The following is a YouTube interview which describes a scientific research discovery. This could be a tremendously important discovery that may lead to meaningful treatments for those with neuroimmune diseases. As always, we remain cautiously optimistic and await further studies before any treatments can be developed. Unfortunately, each child with this immune issue or autism is different. What works for one might not work for another. We started with Dr. Sidney Baker who started the DAN protocol. He thought that autism was a result of a leaky gut. He helped some, but it wasn’t enough. Dr. G he believes that the gut problem is a secondary result of a bigger issue, an overactive immune system that fires when it shouldn't or an underactive immune system that doesn’t fire when it should. That is why some of our children get ill easily and others seem like they never catch anything. But they all are ill. Dr. Goldberg makes only one change at a time to ensure that we know what is and is not working. This infuriates parents who want to fire all the canons at once to help their kids, but he does things very systematically and scientifically. Someone asked about Chelation and HBot. I too tried many crazy things during the days of desperation and search for answers. We never did either of those. If you fix the immune system things like heavy metals and inflammation of the brain are fixed or greatly improved, thus, eliminating the need for chelating or HBOT. Both can be dangerous and cause permanent damage to a child’s system. In addition, the medical treatments must be complemented with suitable rehabilitative and educational interventions. Our children have missed years of development based upon their neurological dysfunction. We used ABA (not one of Dr. G’s favorites) but we did what we thought best. As soon as was able, we went to a more normal method of teaching. We had to teach everything he missed while he was not really with us. It was like rehabilitating a stroke victim. In the beginning, it was how to tell which medical interventions were working. How can you tell if medicine is working when your child has limited verbal ability? spent too many years not speaking, not learning what he should, and learning weird behaviors that helped him survive this hell. It took many years to reteach him. The thing that made me the angriest was that I had to teach what other kids just learn naturally. It took years for these kids to become sick and it takes years to recover. You don't wake up one morning and BAM they are better. Even if one could wave a magic wand and make their bodies normal, they would have to learn everything they missed. Think about it, it takes a “normal” child about three years to learn language. And the hardest part was to keep going, because gave us no indication one way or another that what were doing was working. If you email me privately that you want it, I will forward information I send to parents so they understand the medical treatment. Sorry this was so long winded. I hope it helps any of you hang on and not give up on your children. You need to be more stubborn than they are and that is not easy. Marcia Hinds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 What is his protocol? Do you have a list of stuff he did? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 I was looking at his website and it is interesting, but I would like to hear the things he did for you child also. What is his protocol? Do you have a list of stuff he did? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 I would like to know more too. > > > > > > > What is his protocol? Do you have a list of stuff he did? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Daphnia, What we did took years. The following is the first part of the email I send parents who email me asking for more medical info. I can’t attach articles to the list but will send them privately. If anyone else wants them email me off the list. Thanks, Marcia This is a forward of information I send out to help parents start to learn about medical treatment and how the immune system is involved with autism. Please send it to anyone you think it may help. My son, is recovered as a result of a combination of medical, behavioral and educational treatment. Please realize that all you read and hear about autism is not necessarily true. What if autism isn’t what the “so-called” experts have believed for over thirty years? What if it is not a debilitating psychiatric “disorder,” but a treatable medical condition? If someone says your child can’t be helped or to “wait and see,” then run, do not pass go, and find another doctor. The doctor who helped us, believes that what we are seeing is not truly autism in the classic sense but rather a disease that can be treated medically. My son’s recovery is proof that he was correct. At four years of age, was diagnosed by the leading authority on autism in Minnesota. This psychiatrist said my son would never be okay. According to this “expert,” the best we could hope for is that someday could possibly be running a computer in the basement of a company where he would not have to deal directly with people. She went on to say most of the kids like usually end up in an institution or group home. Today my son, , is twenty-one. He currently attends a university on a merit based academic scholarship and studies Mechanical Engineering. does all the things the doctors told me he would never do. He joined the Sigma Chi fraternity and is president of the Jewish Student Association. drives and has a ton of friends (who would have seen that one coming?) He excels academically and is a member of the Engineering Honor Society (top 10% GPA). But most importantly, is a good person with great values and is happy. If anyone would have told me this was possible when he was little, I never would have believed them. Unbelievable as it seems, this is the same child who wanted to spend his days plugging in a portable radio into every outlet in the house over and over again. Here is a link to the videos on U tube of three of Dr. G’s recovered kids? There are hundreds out there. My is among the three kids shown http://www.youtube.com/watch?v=iGuSVBVEU3I http://www.youtube.com/watch?v=KLhn1yfFh_g & feature=related What most medical doctors are just starting to accept is that Autism, ADD, ADHD are the result of a medical condition, an immune system that isn't working properly. Dr. Goldberg even coined his own term for this condition. He calls it NIDS--Neuroimmune Dysfunction Syndrome. It is very complicated, but the way I understand it some children with autism have immune systems that work overtime and produce too many disease fighters for too long; while at other times their systems do not produce enough. This results in some children having chronic infections and viruses in their systems. That is why some of our children get ill easily and others seem like they never catch anything. Some with overactive immune systems don’t appear sick at all, but they are. Unfortunately, each child with this immune issue or autism is different. What works for one might not work for another. We started with Dr. Sidney Baker who started the DAN protocol. He thought that autism was a result of a leaky gut. Dr. Baker helped point us in the right direction, but it wasn’t enough. Unlike the DAN doctors, Dr. Goldberg believes that the gut problem is a secondary result of a bigger issue, a dysregulated immune system that fires when it shouldn't or one that sometimes doesn’t fire when it should. Dr. Goldberg makes only one change at a time to ensure that we know what is and is not working. This infuriates parents who want to fire all the canons at once to help their kids, but he does things very systematically and scientifically. All of our children have abnormal blood flow to areas of their brains which can improve with treatment of the immune system. One test Dr. Goldberg uses to measure is a Neuro spect. It measures blood flow to see if the brain is functioning properly. By reading this test, specialists can tell if a child will have a learning disability in math or reading. They can also tell if a child is ADHD (Attention Deficit Hyperactivity Disorder) or Autistic. For most children correctly diagnosed with autism, the brain spect shows decreased blood flow to the temporal (and parietal) areas of the brain. Brain spects have documented that the blood flow to these areas of the brain can be increased after alleviating the stress on the immune system. When the blood flow is improved, kids get better. In addition, the medical treatments must be complemented with suitable rehabilitative and educational interventions. We had to teach everything he missed while he was not really with us. As a result of neurological dysfunction, our children did not develop normally. spent too many years not speaking, not learning what he should, and learning weird behaviors that helped him survive this hell. To correct these deficiencies we used ABA (not one of Dr. G’s favorites) but I know this was what needed. In the beginning, it was how to tell which medical interventions were working. How can you tell if medicine is working when your child has limited verbal ability? It takes a “normal” child usually about three years to learn language, even without medical issues. The hardest part was to keep going, because gave us no indication one way or another that what were doing was working. The thing that made me the angriest was that I had to teach what other kids just learn naturally. It was like rehabilitating a stroke victim. You don't wake up one morning and BAM they are better. Even if one could wave a magic wand and make their bodies normal, they would have to learn everything they missed while they were sick. When my son entered kindergarten at almost six years old, he was in the third percentile for speech. By that time we had been seeing Dr. Goldberg for about a year. He needed a full-time aide in his classroom to help him in school. By the third grade, my son tested in the 85th percentile for speech and by fifth grade no longer received any services or assistance at school. Dr. Goldberg treated medically but only used hard science and medical tests to treat my child. If you are even considering seeing him, you should call the office to get on the waiting list. There is a clinic in New York who does things similar to Dr. G. Since it is so much closer you might want to call there and ask about being seen. The director is Kathy on and she is wonderful. The number of the clinic is . The doctor they use is Bruce whose own child sees Dr. Goldberg. Dr. also has a clinic in Texas. I don’t know which would be closer for you. Once you go to Dr. or Dr. G for an initial appointment, follow-up appointments are usually done by phone. Check out the NIDS website for more detailed information. It is http://www.nids.net It is hard to navigate but there is good info there. Check out the section titled “For Families” Currently a new website is being developed. http://stopcallingitautism.com/autismimmunedysfunction.php We survived the autism diagnosis; but it wasn’t easy and there were many times I thought we weren’t going to make it. In the beginning, most of what I did was not because I believed my child could get better, but rather to alleviate the guilt I knew I would have if I ever had to find permanent placement for him in a group home. I wanted to be able to tell myself that I did everything possible to help him. Getting well wasn't easy and it wasn't overnight. It was a long haul and the hardest thing I have ever done. It is ten steps forward and three steps back, but full recovery is possible. Attached to this email are several articles. I would read, “Let’s Just Stop Calling it Autism” first. There are also several articles authored by Dr. Goldberg. And one I wrote " One Cure Doesn't Fit All " when my son was almost seven. In this I called my son, , to protect his privacy. I would love to help any way I can. Please call if you need me. Marcia Hinds 805 497-8202 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 It's fairly obvious to everybody but the most closed-minded neurodiversity types, that that is just what "autism" is. Once you get there,or are almost there,you see recovery from "autism" as no big deal.It's all the other medical conditions that go along with it,especially the metabolic/mitochondrial,and immune problems that are the REAL debilitating,and disabling disorders.Recoverey is work,but it's no big deal,given time and effort anybody can do it. To: dmlcannon@...; mb12 valtrex Sent: Fri, February 5, 2010 5:56:34 AMSubject: Re: Recovery Daphnia, My son, is recovered as a result of a combination of medical, behavioral and educational treatment. Please realize that all you read and hear about autism is not necessarily true. What if autism isn’t what the “so-called†experts have believed for over thirty years? What if it is not a debilitating psychiatric “disorder,†but a treatable medical condition? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Could you give us a brief list of the types of things you did to help with these other conditions. My DAN isn't very helpful and we're trying to go through this with a helpful doctor that will do the tests but isn't experienced in helping children with autism. It's fairly obvious to everybody but the most closed-minded neurodiversity types, that that is just what " autism " is. Once you get there,or are almost there,you see recovery from " autism " as no big deal.It's all the other medical conditions that go along with it,especially the metabolic/mitochondrial,and immune problems that are the REAL debilitating,and disabling disorders.Recoverey is work,but it's no big deal,given time and effort anybody can do it. To: dmlcannon@...; mb12 valtrex Sent: Fri, February 5, 2010 5:56:34 AMSubject: Re: Recovery Daphnia, My son, is recovered as a result of a combination of medical, behavioral and educational treatment. Please realize that all you read and hear about autism is not necessarily true. What if autism isn’t what the “so-called” experts have believed for over thirty years? What if it is not a debilitating psychiatric “disorder,” but a treatable medical condition? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 That is my problem,my autism is almost gone,but I am still very sick,and my DAN! is not much help. To: mb12 valtrex Sent: Fri, February 5, 2010 10:37:27 AMSubject: Re: Re: Recovery Could you give us a brief list of the types of things you did to help with these other conditions. My DAN isn't very helpful and we're trying to go through this with a helpful doctor that will do the tests but isn't experienced in helping children with autism. On Fri, Feb 5, 2010 at 9:54 AM, Kulp <thorenstd124@ yahoo.com> wrote: It's fairly obvious to everybody but the most closed-minded neurodiversity types, that that is just what "autism" is. Once you get there,or are almost there,you see recovery from "autism" as no big deal.It's all the other medical conditions that go along with it,especially the metabolic/mitochond rial,and immune problems that are the REAL debilitating, and disabling disorders. Recoverey is work,but it's no big deal,given time and effort anybody can do it. From: and Marcia Hinds <hindssiteverizon (DOT) net>To: dmlcannongmail (DOT) com; mb12 valtrex@ yahoogroups. comSent: Fri, February 5, 2010 5:56:34 AMSubject: Re: Recovery Daphnia, My son, is recovered as a result of a combination of medical, behavioral and educational treatment. Please realize that all you read and hear about autism is not necessarily true. What if autism isn’t what the “so-called†experts have believed for over thirty years? What if it is not a debilitating psychiatric “disorder,†but a treatable medical condition? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 . Where are you located? Maybe we could suggest you another DAN doc. Sent via BlackBerry by AT&TDate: Fri, 5 Feb 2010 10:37:27 -0700To: <mb12 valtrex >Subject: Re: Re: Recovery Could you give us a brief list of the types of things you did to help with these other conditions. My DAN isn't very helpful and we're trying to go through this with a helpful doctor that will do the tests but isn't experienced in helping children with autism. On Fri, Feb 5, 2010 at 9:54 AM, Kulp <thorenstd124> wrote: It's fairly obvious to everybody but the most closed-minded neurodiversity types, that that is just what " autism " is. Once you get there,or are almost there,you see recovery from " autism " as no big deal.It's all the other medical conditions that go along with it,especially the metabolic/mitochondrial,and immune problems that are the REAL debilitating,and disabling disorders.Recoverey is work,but it's no big deal,given time and effort anybody can do it. From: and Marcia Hinds <hindssiteverizon (DOT) net>To: dmlcannongmail; mb12 valtrex Sent: Fri, February 5, 2010 5:56:34 AMSubject: Re: Recovery Daphnia, My son, is recovered as a result of a combination of medical, behavioral and educational treatment. Please realize that all you read and hear about autism is not necessarily true. What if autism isn’t what the “so-called” experts have believed for over thirty years? What if it is not a debilitating psychiatric “disorder,” but a treatable medical condition? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Utah there are only two. One does not take any insurance. The other we went to for 2 years. . Where are you located? Maybe we could suggest you another DAN doc. Sent via BlackBerry by AT & T Date: Fri, 5 Feb 2010 10:37:27 -0700 To: <mb12 valtrex > Subject: Re: Re: Recovery Could you give us a brief list of the types of things you did to help with these other conditions. My DAN isn't very helpful and we're trying to go through this with a helpful doctor that will do the tests but isn't experienced in helping children with autism. It's fairly obvious to everybody but the most closed-minded neurodiversity types, that that is just what " autism " is. Once you get there,or are almost there,you see recovery from " autism " as no big deal.It's all the other medical conditions that go along with it,especially the metabolic/mitochondrial,and immune problems that are the REAL debilitating,and disabling disorders.Recoverey is work,but it's no big deal,given time and effort anybody can do it. To: dmlcannon@...; mb12 valtrex Sent: Fri, February 5, 2010 5:56:34 AMSubject: Re: Recovery Daphnia, My son, is recovered as a result of a combination of medical, behavioral and educational treatment. Please realize that all you read and hear about autism is not necessarily true. What if autism isn’t what the “so-called” experts have believed for over thirty years? What if it is not a debilitating psychiatric “disorder,” but a treatable medical condition? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 , What did you do to help your son with the auditory processing disorder? Kerri To: mb12 valtrex Sent: Fri, February 5, 2010 8:58:31 PMSubject: Re: Recovery , I have to agree. My son is recovered from his auditory processing disorder, stuttering problem and much of his social abnormalities (this stuff disappeared very early on within months). However, we are just not there yet with his immune system, we are almost worse, and it really is debilitating due to the aggression/behavior that goes with it.>> It's fairly obvious to everybody but the most closed-minded neurodiversity types, that that is just what "autism" is. Once you get there,or are almost there,you see recovery from "autism" as no big deal.It's all the other medical conditions that go along with it,especially the metabolic/mitochond rial,and immune problems that are the REAL debilitating, and disabling disorders. Recoverey is work,but it's no big deal,given time and effort anybody can do it.> > > > > > > > > > > > ____________ _________ _________ __> From: and Marcia Hinds <hindssite@. ..>> To: dmlcannon@.. .; mb12 valtrex@ yahoogroups. com> Sent: Fri, February 5, 2010 5:56:34 AM> Subject: Re: Recovery> > > Daphnia,> > My son, is recovered as a result of a combination of medical, behavioral and educational treatment. Please realize that all you read and hear about autism is not necessarily true. What if autism isn’t what the “so-called†experts have believed for over thirty years? What if it is not a debilitating psychiatric “disorder,†but a treatable medical condition? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 I am quite certain it has to do with the methyl B12 shots b/c when we miss a scheduled dose, he doesn't understand what we are saying to him as readily as he does with the shot (not to mention he starts to stutter again!). Also, there seems to be the same problem when he misses his other methylation supps (TMG, folinic, etc.). But my money is on the shots for him. > > > > It's fairly obvious to everybody but the most closed-minded neurodiversity types, that that is just what " autism " is. Once you get there,or are almost there,you see recovery from " autism " as no big deal.It's all the other medical conditions that go along with it,especially the metabolic/mitochond rial,and immune problems that are the REAL debilitating, and disabling disorders. Recoverey is work,but it's no big deal,given time and effort anybody can do it. > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > From: and Marcia Hinds <hindssite@ ..> > > To: dmlcannon@ .; mb12 valtrex@ yahoogroups. com > > Sent: Fri, February 5, 2010 5:56:34 AM > > Subject: Re: Recovery > > > >  > > Daphnia, > >  > > My son, is recovered as a result of a combination of medical, behavioral and educational treatment.  Please realize that all you read and hear about autism is not necessarily true. What if autism isn’t what the “so-called†experts have believed for over thirty years? What if it is not a debilitating psychiatric “disorder,†but a treatable medical condition? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 strep also fades and PANDAS can go away on it's own as well Re: Recovery I think recovery also depends on specifically what issues led to the development of autism to begin with. For example, my son (who was never diagnosed, but we believe was on the mild end of the spectrum) had many biomedical issues, but I believe the ones that debilitated him the most were PANDAS (OCD and tics brought on by strep infections) and PITAND syndrome (similar to PANDAS, but the child is also affected by other viruses/bacteria). My son has reached recovery in many areas (stuttering, social interactions, auditory processing disorder) but not yet in the area of PANDAS. I often ask myself, will he ever be recovered? But then I think, well in terms of "autism" yes I believe that he is fully recovered b/c his language impairment and his social interactions have basically normalized. So, I can't complain, but we have a tremendous problem going back and forth between strep and yeast (shen we treat the strep with antibiotics we get yeast, when we treat the yeast we get bacteria, etc...). Sometimes these issues are rather debilitating for our family, but I am not giving up on what I consider to be full recovery - being able to manage, to the best of our ability, the strep/yeast/bacteria issues so that MOST of our days are functional and so that my son can live a MOSTLY normal life.On the other hand, my 2 year old also showed very early signs of autistic-like regression starting at the age of 4 months. By the time he was 12 months I began the DAN protocol and I feel that he recovered from autism in a couple month's time. He has some speech delay left, but he does not have the struggles that my 5 year old has with the ups and downs of regressions. Now, if I took him off all his supps/diet, what would he look like? I have no idea...The other thing to remember is that even when our kids reach recovery, they are still not "typical" in that they can handle the impact of the many toxins in our environment. They are still "fragile" and require very close care in terms of managing their over-all environment (example, careful consideration should be given when they need a tetanus shot, etc...).Also want to mention that Jerry Kartzinel (wrote the book Healing and Preventing Autism with McCarthy) says that recovery can mean fully recovered without the need for any meds/supps, or it can mean that a child reaches "managed recovery" (needs to be managed with multiple meds/supps) but will suffer regressions from time to time, even to the point that he is in a mainstream classroom part of the time and a special needs classroom part of the time. I suppose any improvement is better than none.Wow, I wrote a book, but that's my 2 cents!> > > Hi everyone, I'm fairly new to the group and don't really post much> > because I just started my 5 yo son on biomeds a few weeks ago. Haven't> > reached the hard stuff yet. However, I'd like to know what exactly> > does "recovery" mean to us. In terms of our kids and all these meds> > they take to get there. Does that mean that they keep on taking most,> > all or some of these meds for life? Or just until they need them, do> > they have to be tested every 6 months to check their levels? Will> > they regress after some of the meds are stopped? I've watched Stan's> > videos with his son and many others on the web in tears to think that> > my son could possibly talk one day. I'm shooting for recovery, but I> > can't expect it because I'm afraid that I won't get there. If anyone> > can take a few minutes to paint me a picture (even if it's not pretty)> > I'd appreciate it. Thanks everyone.> >> >> >> Quote Link to comment Share on other sites More sharing options...
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