Guest guest Posted November 24, 2010 Report Share Posted November 24, 2010 , The good part of your situation (if any of us in the A-Club can say anything is good about this horrible disease) is that your son is only three. That way when he starts to get better, you won't have as much to teach him to catch up. Please know your son can get better with proper medical treatment and then rehabilitation. My son, 's recovery resulted from a doctor who believes autism is a treatable disease and not a developmental or a psychiatric disorder. Dr. Goldberg is right when he says autism is a medical condition where those affected have immune systems that are not working properly. No parent should accept that their child cannot be helped. is living proof that kids can get better. was diagnosed when he was four years old. A psychiatrist who was the leading authority on autism said my child would never be okay. According to this expert, was going to end up in an institution or group home. Now at 22, the only institution attends is Santa Clara University where he studies mechanical engineering on a merit scholarship. excels academically and is in the Engineering Honor Society (top 10% GPA). He's a member of Sigma Chi Fraternity and was president of the Jewish Student Association. But more importantly, is a typical college student who drinks an occasional beer, goes on dates, stays out too late with friends and then sleeps through eight o'clock classes. I couldn't be more proud! Unbelievable as it seems, this is the same child who wanted to spend all day, every day, plugging in a portable radio into each outlet in the house. Back then, I wasn't sure if I had the strength to be more stubborn than my son. There were mornings I didn't want to get out of bed to face another day filled with autism. The worst times were when I didn't have a direction or a plan. I was hanging onto my sanity by my fingernails. But, at the end of the day, I was faced with a choice: let drift off forever into his own world, or drag him kicking and screaming into ours. After we helped medically, it was possible for him to learn. Behavioral and educational interventions were used in conjunction with the medical treatment to catch up on everything he missed. Initially, we used Applied Behavior Analysis (ABA) for his rehabilitation and when he was ready we moved towards more natural ways of teaching. It took years to correct 's deficits in speech and social skills. It was almost like taking a stroke victim and bringing them back. Our story is not about coping with autism, but rather fighting back and not accepting the misconceptions associated with this diagnosis. This process is definitely not for sissies or parents looking for that magic cure. Please email me privately if you want me to forward you info on the medical and how to get in touch with Dr. Goldberg, Dr. , or the Northern New York Autism Clinic. Best, Marcia Hinds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2010 Report Share Posted November 24, 2010 Dear , We began with our son, Boone, back in April of this year. I thought I'd chime in so you have both ends of it, Marcia's inspiring success story, and ours, which is closer to the beginning of treatment. Our son is 7 going on 8. Like your son, he was fine until 18 months, when he started to regress, He is now very much like Marcia describes as a young boy. We have been in autism recovery mode for more than 7 years because his older brother has a very mild case (he's pretty much recovered now). But Boone has been a much tougher challenge. We did a lot of DAN stuff over the years, and did not see anything meaningful for Boone. We were sure that our son's problem was a medical one, but none of the treatments were working. We were at a point of needing to make a radical change and we heard about Dr. G and . When we read more about it and talked to other parents it just made sense to us, like nothing else had before. We booked our flights from Michigan to go see him. What we like about it is that it is so methodical. With DAN, it felt like they just shoved a pile of supplements across the table, said give him this, this and this, and see ya! No real follow-up, no systematic introduction of things so you would know what was working or not. And I was beginning to wonder about the mega doses of some vitamins and supplements, asking myself, how do we really know this is safe? , for not yet being in the mainstream, is actually a very conventional medical approach. No mega supplements or treatments (like chelation or HBOT) whose efficacy and safety for children are unproven. I think of Dr. G as an old school pediatrician with an open mind. He bases all his treatment on good medical practices. And definitely adheres to the " first do no harm " oath. Because he prescribes medications, he follows up regularly (in our case, every 8 weeks) with blood work. I believe this is to first, ensure that there are no negative effects from meds, and second, to keep a continuous read on the effectiveness of treatment. Believe it or not, he can get a lot of very specific information from this blood work to guide treatment decisions. The logic of it is very clear. So how is Boone doing? To us he is doing great. But he is far from the finish line. It is not a miracle cure and we will be at it for years to come. BUT, he has made more improvement in the past 7 months than he did in the previous 4 years. He is talking and singing, his reports from school get better by the week. Higher focus, engagement and awareness of his surroundings. Medically, we haven't seen a mystery rash in months, and he seems like a healthy, happy kid. His OCD symptoms, which were getting progressively more debilitating, are pretty much gone! He is no longer distracted by them at school so he is actually learning to read and do basic math! Because he is in such a better place functionally, we are now looking at the full court press on behavior mod. and academics so he will be ready to transition out of his special ed. room ASAP. We feel that we are on the right path now, that all the effort and expense are actually producing! It is hard to speak to the cost of it, not knowing what your situation is with insurance. Our insurance covers his blood work and prescriptions, which is a huge benefit. But it does not cover office visits. After the initial, in-person office visit, Dr. G does phone consults for out-of-towners once a month to strategize about treatment direction. That is a built-in part of the process. Dr. G is a taskmaster, which works for us! He is passionate about healing our kids and expects parents to toe the line with diet, following instructions and follow-up testing. I hope this is helpful. If you have any other questions, please feel free to write me directly. Marcia is also the best resource! All the best, Tammy Is this right for us? I have been looking into and Dr. Goldberg, but really want the feelings of other parents before going forward. My son, now 3, regressed at 18 months. He now has crohns, absence seizures, allergies to pretty much everything, horrible yeast, clostridia, mitochondrial problems, and who knows what else! We have been patients of Dr. Krigsman for 6 months, I don't think his protocol is helping. We have been SCD for 18 months, helped in the begining and not so much now. We are now doing LOD as well, and saw great things the first week, but that leveled out. We have done mHBOT, but that doesn't seem to be as effective as it once was. We have also been seeing a naturopath that has been helpful, but not lifechanging. I want to try something new, but of course I am scared. I am trying to figure out what Dr. Goldberg's protocol is. I am a little confused. Is it similar for most? Also, how much? I know that is a horrible question. But the truth is that we have tried many things already and have ran out of money! Just wondering how much the average costs are. Also, do they do phone consults? Thanks so much, so desperate for help for my baby. But trying so many things with little help just hurts. Thanks for your help, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2010 Report Share Posted November 24, 2010 <p>Marcia, tears running down my face as I read about dragging your son " kicking and screaming " . I feel the exact same way. I'm having a particularly rough day and your response has moved and encouraged me. Thank you! </p> <p>, it is not for the weak hearted, absolutely. We are at the beginning of this with our now <br> 4 year old girl and I can't even Think about " yesterday " because we have come so far in the past 6 months it hurts to think of where we started.... and I only can imagine those who are worse off than our girl. But I will tell anyone who asks me why I do biomed the same thing I told her pediatrician when we started this road- if I thought digging up mount everest with a spoon will give her a fighting chance I am sure as heck going to give it a try. Luckily for us that small spoon has turned into a bulldozer and our girl gets better every day. If you have the capacity to take one brick off of the load your child is carrying - I say to go for it. What do you have to lose? </p> <p>Jen<br><br><br></p> <p>Sent from on Android</p> Quote Link to comment Share on other sites More sharing options...
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