Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 I would love to see a paragraph or two from people whose children are doing very well on SCD or if they themselves are. We deal so much in questions and answers that it sometimes seems we are not having the wonderful progress reports that were so much enjoyed in previous year. I saved most of them but have had very few in the past three months. Are there any whose children have lost their autism diagnosis or showed significent language and behavioral development and who seem to be feeling so much better? Carol F. SCD 4yrs, Celiac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Hi, Carol. I have included our story recently regarding Dakota's progress, but I thought that I would share a little more. Dakota continues to do far better than anyone ever predicted--except for us, who have always held out hope and prayer. He is a mobile, active, and very verbal little boy now who greets each day with a smile and hug to us all. His doctors are very pleased, still a little sceptical, but even they cannot deny the dramatic change--especially in his EEG and abdominal ultrasounds. The good thing is that we are able to now know which days are truly seizure days wheras before everything was an unknown and a blur. These days are seizure activity in excess of 50 a day, but now these have been increasingly rare--maybe once a month now. It has taken us much longer on SCD to note such significant changes, but I think that is because Dakota has so many health concerns--especially neurologically. But, all is improving steadily. I also wanted to add that at our regular consult with everyone, we always see the same families. A few have been very encouraged by Dakota's success, and although they are still clinging to the ketogenic diet (which I understand), the carbs that they are now introducing are SCD legal, and they are seeing changes, as well. Two cried when they saw Dakota this time doing so much more than lying on the floor drooling, and they are going to try SCD now exclusively. So, we are so grateful to Elaine and to SCD. It has brought so much hope and joy to so many families. Mom to Dakota (Neurofibromatosis Type I, Beckwith-Widemann Syndrome, Childhood Disintegrative Disorder with Seizure Activity (Lennox-Gastaut Patterning), and severe apraxia due to Landau-Kleffner Syndrome) GFCF 3+ years; SCD 1+ year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Hi, Carol. I have included our story recently regarding Dakota's progress, but I thought that I would share a little more. Dakota continues to do far better than anyone ever predicted--except for us, who have always held out hope and prayer. He is a mobile, active, and very verbal little boy now who greets each day with a smile and hug to us all. His doctors are very pleased, still a little sceptical, but even they cannot deny the dramatic change--especially in his EEG and abdominal ultrasounds. The good thing is that we are able to now know which days are truly seizure days wheras before everything was an unknown and a blur. These days are seizure activity in excess of 50 a day, but now these have been increasingly rare--maybe once a month now. It has taken us much longer on SCD to note such significant changes, but I think that is because Dakota has so many health concerns--especially neurologically. But, all is improving steadily. I also wanted to add that at our regular consult with everyone, we always see the same families. A few have been very encouraged by Dakota's success, and although they are still clinging to the ketogenic diet (which I understand), the carbs that they are now introducing are SCD legal, and they are seeing changes, as well. Two cried when they saw Dakota this time doing so much more than lying on the floor drooling, and they are going to try SCD now exclusively. So, we are so grateful to Elaine and to SCD. It has brought so much hope and joy to so many families. Mom to Dakota (Neurofibromatosis Type I, Beckwith-Widemann Syndrome, Childhood Disintegrative Disorder with Seizure Activity (Lennox-Gastaut Patterning), and severe apraxia due to Landau-Kleffner Syndrome) GFCF 3+ years; SCD 1+ year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Hi, Carol. I have included our story recently regarding Dakota's progress, but I thought that I would share a little more. Dakota continues to do far better than anyone ever predicted--except for us, who have always held out hope and prayer. He is a mobile, active, and very verbal little boy now who greets each day with a smile and hug to us all. His doctors are very pleased, still a little sceptical, but even they cannot deny the dramatic change--especially in his EEG and abdominal ultrasounds. The good thing is that we are able to now know which days are truly seizure days wheras before everything was an unknown and a blur. These days are seizure activity in excess of 50 a day, but now these have been increasingly rare--maybe once a month now. It has taken us much longer on SCD to note such significant changes, but I think that is because Dakota has so many health concerns--especially neurologically. But, all is improving steadily. I also wanted to add that at our regular consult with everyone, we always see the same families. A few have been very encouraged by Dakota's success, and although they are still clinging to the ketogenic diet (which I understand), the carbs that they are now introducing are SCD legal, and they are seeing changes, as well. Two cried when they saw Dakota this time doing so much more than lying on the floor drooling, and they are going to try SCD now exclusively. So, we are so grateful to Elaine and to SCD. It has brought so much hope and joy to so many families. Mom to Dakota (Neurofibromatosis Type I, Beckwith-Widemann Syndrome, Childhood Disintegrative Disorder with Seizure Activity (Lennox-Gastaut Patterning), and severe apraxia due to Landau-Kleffner Syndrome) GFCF 3+ years; SCD 1+ year Quote Link to comment Share on other sites More sharing options...
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