Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 On Thu, 24 May 2001 21:39:52 -0000 mommytopaul@... writes: .. We are going to do GFCF diet 100%. I have tried > Hope to get to know you all more, > yhen > > Yhen, Hi and welcome to us all here. You'll get lots of advice, recipes and ideas here. Most have done it gradual - first the " CF " part and then the " GF " part, but others did it vice versa or both at once. A good book to read to help you with alot is " Special Diets for Special Kids " by . My son is GFCF for 1 year and 1 month and doing so very well. I went CF 1st and then gradually GF all the way. The diet does become very easy to maintain once you get the hang of what is ok and what isn't. Ask what all you have questions about and we'll all try and help. BTW my son is 6 years old and DX with autism. on Long Island New York * ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 Hello and Welcome! I think you are doing the right thing by trying the diet. We have seen great improvements in our son and can attribute most of it to his dietary intervention. It seems to keep him clear headed enough to benefit from his therapies. This group is great - lots of info, lots of great people. I want to give you some advice that I wish I had been given when my son was 2 years 8 months. The first part you are already doing by trying the diet, the second thing is hire an Advocate to help you get the appropriate services from your school district. We wasted a lot of time assuming that what they originally offered us was appropriate, only to learn that it was not. What we did was found an advocate - a person who will help you navigate the waters of special education - we got this person by talking to parents in our area and getting a recommendation. We sat down with our advocate and tried to figure out what our son needed and then we asked the school district for it, they said no, we went to mediation and then we got it. It was the best money we ever spent, and I will never forgive the school district for wasting 9 months of our precious time. Also, don't make the mistake we did - at first we were glad when the school district told us that our son didn't need that much service since he was not so severely effected. That was comforting to hear, but completely inaccurate. I don't know how your child is affected, but early intervention is the best chance for all children on the autism spectrum. The more they get at the beginning - the farther they go. Ask for the moon. OK - I'll get off my soapbox now. Good luck, welcome and ask lots of questions! Moira mom to Vico (4 ASD) and Culzean (1 year old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2001 Report Share Posted May 25, 2001 > > On Thu, 24 May 2001 21:39:52 -0000 mommytopaul@y... writes: > . We are going to do GFCF diet 100%. I have tried > > Hope to get to know you all more, > > yhen > > > > > Yhen, > Hi and welcome to us all here. You'll get lots of advice, recipes and Hi , We're starting with the GF diet first. So far, he's doing well & can't even tell that something's different. Does your pediatrician support GFCF diet? yhen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 , I do not believe that anyone can tell you exactly what the final stages look like. They appear to me to be different from patient to patient. My husband just passsed away at 70+ years old. I too wondered what it would be like near the end. Even so, his death came as a shock to all of his family including me. Yes, he had been weak, but he seemed to be as good as any other day. We had a stomach tube implanted so that he could get nourishment and medication in easier. He was to leave the hospital that very day. When I awoke that morning at about 6:00 am to a quiet room, I new he was gone. He had a long history of noise while asleep. Many others can tell you other stories, but the exact symptoms will have been different. Thus, I believe that none of us can tell you exactly what those last days will be like. Marilyn in TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 , I do not believe that anyone can tell you exactly what the final stages look like. They appear to me to be different from patient to patient. My husband just passsed away at 70+ years old. I too wondered what it would be like near the end. Even so, his death came as a shock to all of his family including me. Yes, he had been weak, but he seemed to be as good as any other day. We had a stomach tube implanted so that he could get nourishment and medication in easier. He was to leave the hospital that very day. When I awoke that morning at about 6:00 am to a quiet room, I new he was gone. He had a long history of noise while asleep. Many others can tell you other stories, but the exact symptoms will have been different. Thus, I believe that none of us can tell you exactly what those last days will be like. Marilyn in TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 , I agree with Marilyn in TN, none of us can predict what the end will be like. Your said " Dr's seem to be scared to talk about where she is at in the progression of this disease " This is because about 95% of them know nothing about, or have never heard of MSA/Shy-Dragger. I am sorry you had to find us. I believe you will find a very knowledgeable and caring people in our family. I am a patient, but others are care givers. We have several past care givers, who stayed with the group and are very helpful. No questions or to sensitive to ask. We are not only living the disease. but, we hate it with passion and WILL find a cure. Welcome to the family.. God Bless, Judy & Jim Stark New here. > I was just glancing thru the last few mesage posts. > > Seems like a nice group of people here. > > My wife (45) has been diagnosed with MSA/Shy-Drager. > > She has been taking Norpace for PVC's for 8 years now. She started > taking ProAmatine for orthostatic hypotension 4 months ago.. Thats > when the Cardiologist sent her to a different Neruologist. > > Dr's seem to be scared to talk about where she is at in the > progression of this disease. We both know how serious it is. But > pointed questions are him-hawed... > > Can anyone tell me what the advanced stages are like? I know she has > been having problems for 8 years that seem to be related to MSA. > > Current symptoms are low blood pressure, irregular heart rate, light > headedness, blurred vision/night blindness, speach slurring/wrong > words spoken, slight tremor in the right hand, sleep apnia, problems > swallowing, bladder urgency, constipation, hypokalemia and > hypocalcemia. She is taking massive doses of Potassium and Calcium. > > Peace and Love.. > T. Cochran II > Canon City, Co. > > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 , I agree with Marilyn in TN, none of us can predict what the end will be like. Your said " Dr's seem to be scared to talk about where she is at in the progression of this disease " This is because about 95% of them know nothing about, or have never heard of MSA/Shy-Dragger. I am sorry you had to find us. I believe you will find a very knowledgeable and caring people in our family. I am a patient, but others are care givers. We have several past care givers, who stayed with the group and are very helpful. No questions or to sensitive to ask. We are not only living the disease. but, we hate it with passion and WILL find a cure. Welcome to the family.. God Bless, Judy & Jim Stark New here. > I was just glancing thru the last few mesage posts. > > Seems like a nice group of people here. > > My wife (45) has been diagnosed with MSA/Shy-Drager. > > She has been taking Norpace for PVC's for 8 years now. She started > taking ProAmatine for orthostatic hypotension 4 months ago.. Thats > when the Cardiologist sent her to a different Neruologist. > > Dr's seem to be scared to talk about where she is at in the > progression of this disease. We both know how serious it is. But > pointed questions are him-hawed... > > Can anyone tell me what the advanced stages are like? I know she has > been having problems for 8 years that seem to be related to MSA. > > Current symptoms are low blood pressure, irregular heart rate, light > headedness, blurred vision/night blindness, speach slurring/wrong > words spoken, slight tremor in the right hand, sleep apnia, problems > swallowing, bladder urgency, constipation, hypokalemia and > hypocalcemia. She is taking massive doses of Potassium and Calcium. > > Peace and Love.. > T. Cochran II > Canon City, Co. > > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Marilyn, I agree for the most part with this thought. Most MSA patients do die from aspiration pneumonia or heart failure (I feel). Charlotte was alive at 12:35 PM and we found her dead at 1:10 PM just 35 minutes later. She never made a sound as I was in the next room. She was unable to move by herself at that time and had to eat pureed food if it was by mouth. She had little sppech at death and then usaully only during her Sinemet " ON " period. Take care, Bill Werre ================== and Marilyn wrote: >, > >I do not believe that anyone can tell you exactly what the final stages look >like. They appear to me to be different from patient to patient. > >My husband just passsed away at 70+ years old. I too wondered what it would >be like near the end. Even so, his death came as a shock to all of his >family including me. Yes, he had been weak, but he seemed to be as good as >any other day. We had a stomach tube implanted so that he could get >nourishment and medication in easier. He was to leave the hospital that >very day. When I awoke that morning at about 6:00 am to a quiet room, I new >he was gone. He had a long history of noise while asleep. > >Many others can tell you other stories, but the exact symptoms will have >been different. Thus, I believe that none of us can tell you exactly what >those last days will be like. > >Marilyn in TN > > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Marilyn, I agree for the most part with this thought. Most MSA patients do die from aspiration pneumonia or heart failure (I feel). Charlotte was alive at 12:35 PM and we found her dead at 1:10 PM just 35 minutes later. She never made a sound as I was in the next room. She was unable to move by herself at that time and had to eat pureed food if it was by mouth. She had little sppech at death and then usaully only during her Sinemet " ON " period. Take care, Bill Werre ================== and Marilyn wrote: >, > >I do not believe that anyone can tell you exactly what the final stages look >like. They appear to me to be different from patient to patient. > >My husband just passsed away at 70+ years old. I too wondered what it would >be like near the end. Even so, his death came as a shock to all of his >family including me. Yes, he had been weak, but he seemed to be as good as >any other day. We had a stomach tube implanted so that he could get >nourishment and medication in easier. He was to leave the hospital that >very day. When I awoke that morning at about 6:00 am to a quiet room, I new >he was gone. He had a long history of noise while asleep. > >Many others can tell you other stories, but the exact symptoms will have >been different. Thus, I believe that none of us can tell you exactly what >those last days will be like. > >Marilyn in TN > > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
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