Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Hi to and Haley, Haley: I certainly want you to make your own decisions but... Dr. Pakula at the Marcus Institute diagnosed my daughter. I happened to get in so quickly due to a cancelation. At the time I really hadn't done too much research so really didn't even know how flawed their thinking is. Basically they are of the mindset that there is no cure, treatment, or helping autistic kids other than traditional Speach, and Occupational Therapies (I'm not sure where they stand on ABA - which is not an appropriate way to go for my mildly autistic and almost totally recovered daughter anyway). I have since discovered through implementing the diet, digestive enzymes, probiotics, and supplements (mainly through kirkman labs www.kirkmanlabs.com) she is almost totally recovered. We are getting ready to go through the full program for Oral Chelation as outlined by Dr. Poul's in the book The Natural Medicine Guide to Autism or can also be found on www.extremehealthusa.com. Dr. Pakula went bizerk when I mentioned to her that Hannah became autistic after her MMR. She went into the whole "There is no scientific evidence that links vaccinations to autism etc. etc. and I have to explain that to every parent who receives this diagnosis because like you they are convinced that vaccinations "MADE" their child autistic." I don't know call me crazy but I would have thought this would have been a clue to her. I didn't take me long after messing around with Doctors to come to the determination we would no longer listen to the Doctors. Also, I find their postition on the GF/CF diet to be absolutely ridiculous! Dr. Pakula told us "although there are scientic support starting to come about for the effectiveness of the GF/CF diet and lots of parental antedotes, We are not big advocates of the diet because it is hard to maintain". I thought this was also kind of clueless since I find it a thousand times harder to deal with an autistic toddler than stick to the diet!!! Dr. Pakula also feels Oral Chelation is dangerous. Maybe because it can temporarily make symptoms worse? How dangerous is it to leave these heavy metals in the body!?! In any event, I feel like you are the one who knows your child best. You will know if your child is responding positively or negatively to a treatment long before you could get in to see a doctor and get tests back. Just do your homework and decide what you feel is most appropriate for your child. If you ever have a Dr. even insinuate that they know more or better than you do RUN don't walk to the nearest exit! I can't say anything of the Amino Acid test. Hannah's tests same as your so all came back normal. That is interesting though because I thought most kids were amino acid deficient. Although maybe those amino acids need something (possibly sulphur or another type of amino acid?) to convert to other amino acids and something is ammiss so that's why these are elevated. This is just a guess based on my fairly limited knowledge of amino acids and how it works. Amino acid problems are pretty much always either going to be poor diet and/or maldigestion especially of proteins etc. : What Dan! Doctor do you use? I am on the waiting list (now at 7-8 months?) for Dr. son-Lippitt. Dr. Begeron also comes highly recommeded from a friend whos entire family is extremely allergic to everything but I'm not sure he specializes in autism. He is listed on the Dan! list and is trained to do EPD (a method for clearing food allergies). Thanks! Darla Birchall -----Original Message-----From: & DeJarnette Sent: Friday, June 25, 2004 10:09 AMTo: autism-georgia Subject: Re: Ammino acid test Hi! My son too had the fragile x test and was normal. He also had the amino acid test done and some of his stuff was high. His Methionine was high, his Lysine was high and his arginine was high. I am seeing a DAN! doctor and he put him on Glycine supplements. I am supposed to get him retested, but I haven't done so yet. That is a whole other story. I have never been to the Marcus Institute, but just from heresay, they probably won't tell you anything. They are not big into the biomedical part or worrying about that stuff. Like I said that is just what I heard, it won't hurt to ask them. DeJarnette Ammino acid test My son was just diagnosed a month ago with mild to moderate autism. They did some blood tests on that day. The fragile X syndrome, organic acid and chromosome banding. These were all normal. They did a amino acid test, too. Some of these were elevated. Did any of you have this test done and if so was it abnormal? If it was abnormal what did the Dr suggest you do? His second appointment with the Marcus Institute is Monday so I will discuss it with them, but I was just wondering if anyone can give me some insight on it.I know this has to do with the digestive systam so I am wondering if the gluten free diet will be something that we should try. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Hi to and Haley, Haley: I certainly want you to make your own decisions but... Dr. Pakula at the Marcus Institute diagnosed my daughter. I happened to get in so quickly due to a cancelation. At the time I really hadn't done too much research so really didn't even know how flawed their thinking is. Basically they are of the mindset that there is no cure, treatment, or helping autistic kids other than traditional Speach, and Occupational Therapies (I'm not sure where they stand on ABA - which is not an appropriate way to go for my mildly autistic and almost totally recovered daughter anyway). I have since discovered through implementing the diet, digestive enzymes, probiotics, and supplements (mainly through kirkman labs www.kirkmanlabs.com) she is almost totally recovered. We are getting ready to go through the full program for Oral Chelation as outlined by Dr. Poul's in the book The Natural Medicine Guide to Autism or can also be found on www.extremehealthusa.com. Dr. Pakula went bizerk when I mentioned to her that Hannah became autistic after her MMR. She went into the whole "There is no scientific evidence that links vaccinations to autism etc. etc. and I have to explain that to every parent who receives this diagnosis because like you they are convinced that vaccinations "MADE" their child autistic." I don't know call me crazy but I would have thought this would have been a clue to her. I didn't take me long after messing around with Doctors to come to the determination we would no longer listen to the Doctors. Also, I find their postition on the GF/CF diet to be absolutely ridiculous! Dr. Pakula told us "although there are scientic support starting to come about for the effectiveness of the GF/CF diet and lots of parental antedotes, We are not big advocates of the diet because it is hard to maintain". I thought this was also kind of clueless since I find it a thousand times harder to deal with an autistic toddler than stick to the diet!!! Dr. Pakula also feels Oral Chelation is dangerous. Maybe because it can temporarily make symptoms worse? How dangerous is it to leave these heavy metals in the body!?! In any event, I feel like you are the one who knows your child best. You will know if your child is responding positively or negatively to a treatment long before you could get in to see a doctor and get tests back. Just do your homework and decide what you feel is most appropriate for your child. If you ever have a Dr. even insinuate that they know more or better than you do RUN don't walk to the nearest exit! I can't say anything of the Amino Acid test. Hannah's tests same as your so all came back normal. That is interesting though because I thought most kids were amino acid deficient. Although maybe those amino acids need something (possibly sulphur or another type of amino acid?) to convert to other amino acids and something is ammiss so that's why these are elevated. This is just a guess based on my fairly limited knowledge of amino acids and how it works. Amino acid problems are pretty much always either going to be poor diet and/or maldigestion especially of proteins etc. : What Dan! Doctor do you use? I am on the waiting list (now at 7-8 months?) for Dr. son-Lippitt. Dr. Begeron also comes highly recommeded from a friend whos entire family is extremely allergic to everything but I'm not sure he specializes in autism. He is listed on the Dan! list and is trained to do EPD (a method for clearing food allergies). Thanks! Darla Birchall -----Original Message-----From: & DeJarnette Sent: Friday, June 25, 2004 10:09 AMTo: autism-georgia Subject: Re: Ammino acid test Hi! My son too had the fragile x test and was normal. He also had the amino acid test done and some of his stuff was high. His Methionine was high, his Lysine was high and his arginine was high. I am seeing a DAN! doctor and he put him on Glycine supplements. I am supposed to get him retested, but I haven't done so yet. That is a whole other story. I have never been to the Marcus Institute, but just from heresay, they probably won't tell you anything. They are not big into the biomedical part or worrying about that stuff. Like I said that is just what I heard, it won't hurt to ask them. DeJarnette Ammino acid test My son was just diagnosed a month ago with mild to moderate autism. They did some blood tests on that day. The fragile X syndrome, organic acid and chromosome banding. These were all normal. They did a amino acid test, too. Some of these were elevated. Did any of you have this test done and if so was it abnormal? If it was abnormal what did the Dr suggest you do? His second appointment with the Marcus Institute is Monday so I will discuss it with them, but I was just wondering if anyone can give me some insight on it.I know this has to do with the digestive systam so I am wondering if the gluten free diet will be something that we should try. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Dr. son-Lippett in Marietta is a developmental pediatrician who can help you interpret your lab tests and make lots of good recommendations. We took my son to see Dr. Pakula also, and spent a lot of money for basically nothing. She told us he was autistic (we already knew that), and gave us some photocopied materials about the different types of therapies (we already knew that). In short, the Marcus Institute offered very little of value for us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Dr. son-Lippett in Marietta is a developmental pediatrician who can help you interpret your lab tests and make lots of good recommendations. We took my son to see Dr. Pakula also, and spent a lot of money for basically nothing. She told us he was autistic (we already knew that), and gave us some photocopied materials about the different types of therapies (we already knew that). In short, the Marcus Institute offered very little of value for us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Darla- We see Dr. Hicks who is based out of Wisconsin, but has an office here and comes about every other month. I have some issues with him though. Maybe it is just us. our almost 5 year autistic child and his twin sister who I think is mildly autistic have been on supplements, etc. for almost a year, actually more than . Anyhow..I think they have helped, but every other week he wants to do lab work, which are really expensive, because they are test kits, that I have to pay up front. The vitamins are expensive as well, which you probably know. I have to call to do everything, because he never follows up, and half the time I feel like a number rather than a patient. For right now I am halting all the vitamins and just giving him a mulitvitamin, and the testing. We love our kids, and want the best for them, but it is putting a strain on our finances, and our marriage. If we feel that and/or start to regress or are getting sick, we will go back to the vitamins and supplements. They are getting plenty of therapy, school, and other stuff, but we need a break from all this. I do agree that Dr. Pakula's attitude and alot of the others, are one sided. Let me know your thoughts on this situation. I thought about Dr. Lippitson, but she is expensive, as well as a waiting list a mile long. Thanks for your thoughts. DeJarnette Ammino acid test My son was just diagnosed a month ago with mild to moderate autism. They did some blood tests on that day. The fragile X syndrome, organic acid and chromosome banding. These were all normal. They did a amino acid test, too. Some of these were elevated. Did any of you have this test done and if so was it abnormal? If it was abnormal what did the Dr suggest you do? His second appointment with the Marcus Institute is Monday so I will discuss it with them, but I was just wondering if anyone can give me some insight on it.I know this has to do with the digestive systam so I am wondering if the gluten free diet will be something that we should try. Quote Link to comment Share on other sites More sharing options...
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