Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 > > There used to be some seizure info on the pecanbread site but I > can't find it. Is it gone or am I overlooking it? > Also I would like to hear from anyone getting increased seizure > control please, especially in a non-asd kiddo > , I am forwarding ypur message to patty D. as she has experience with this Carol F. Toronto, Celiac, SCD 4 yrs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Hi- I have been planning to write a lengthy posting about our success with SCD in helping control our son's seizures, but I have a bad upper back and typing long emails really makes it sore. BUT I do want to write something tonight so that others can benefit..... The main details--- Our son, Dan, age 21, has gone from 28 life threatening grand mal seizures (easily going into status epilepticus) in the year 2002 down to 1 (yes only 1!) in the year 2004. ( He has averaged over twenty grand mals per year for the past ten years and daily anti-seizure meds make his seizures WORSE, so he hasn't been on any daily anti-seizure meds in 8 years.) The changes we made during the past two years??...In 2003, we started giving him an electrolyte solution ( not sure if the brand is important but we use some from www.kt-solutions.com. It's made by a chemist whose daughter had a lot of seizures). During 2003, Dan only had 11 grand mals, but some were still pretty bad and hard to control even with rectal valium once they started . We continue to use the electrolyte solution. In the fall of 2003, we switched from the GFCF diet to the SCD. I could sense almost right away that we were on our way to success. He had one grand mal during the first week but it was easy to control with rectal valium. A few months after we started SCD, we added methyl B12 shots every three days.(We followed Dr. Neubrander's exact protocol). I really can't say if the methyl B12 shots also helped the seizures, but the shots helped our son talk more and focus better, so we continued them. He had one more easy-to-control grand mal December 2003, but otherwise has really been doing great and steadily improving in all areas. In Sept of 2004, he had one easy-to-control grand mal---his only one this year! At the time he was on Custom Probiotics and not doing well on them (hyper and had trouble sleeping). So we stopped the probiotics and he hasn't had a grand mal since. We are sure that SCD is the main reason he has done so well this year. We have tried so many other things in the past ten years (surgery, the vagus nerve stimulator, IVIG, etc.) with some success with each one but NOTHING LIKE THE SUCCESSS WE'VE HAD IN 2004. It's so great to go a whole year with no ambulance rides or long stints in the ER! Well, my back is letting me know I must end this now. Hope this is helpful. Feel free to email questions----I just have to type shorter replies than this! A special HI to Patti D. and Katera!!! Sorry I am so bad at keeping in touch, but we think about you lots and are sooooo grateful for your postings about Katera that gave us the enthusiasm to start SCD. Dorothy in CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Hi- I have been planning to write a lengthy posting about our success with SCD in helping control our son's seizures, but I have a bad upper back and typing long emails really makes it sore. BUT I do want to write something tonight so that others can benefit..... The main details--- Our son, Dan, age 21, has gone from 28 life threatening grand mal seizures (easily going into status epilepticus) in the year 2002 down to 1 (yes only 1!) in the year 2004. ( He has averaged over twenty grand mals per year for the past ten years and daily anti-seizure meds make his seizures WORSE, so he hasn't been on any daily anti-seizure meds in 8 years.) The changes we made during the past two years??...In 2003, we started giving him an electrolyte solution ( not sure if the brand is important but we use some from www.kt-solutions.com. It's made by a chemist whose daughter had a lot of seizures). During 2003, Dan only had 11 grand mals, but some were still pretty bad and hard to control even with rectal valium once they started . We continue to use the electrolyte solution. In the fall of 2003, we switched from the GFCF diet to the SCD. I could sense almost right away that we were on our way to success. He had one grand mal during the first week but it was easy to control with rectal valium. A few months after we started SCD, we added methyl B12 shots every three days.(We followed Dr. Neubrander's exact protocol). I really can't say if the methyl B12 shots also helped the seizures, but the shots helped our son talk more and focus better, so we continued them. He had one more easy-to-control grand mal December 2003, but otherwise has really been doing great and steadily improving in all areas. In Sept of 2004, he had one easy-to-control grand mal---his only one this year! At the time he was on Custom Probiotics and not doing well on them (hyper and had trouble sleeping). So we stopped the probiotics and he hasn't had a grand mal since. We are sure that SCD is the main reason he has done so well this year. We have tried so many other things in the past ten years (surgery, the vagus nerve stimulator, IVIG, etc.) with some success with each one but NOTHING LIKE THE SUCCESSS WE'VE HAD IN 2004. It's so great to go a whole year with no ambulance rides or long stints in the ER! Well, my back is letting me know I must end this now. Hope this is helpful. Feel free to email questions----I just have to type shorter replies than this! A special HI to Patti D. and Katera!!! Sorry I am so bad at keeping in touch, but we think about you lots and are sooooo grateful for your postings about Katera that gave us the enthusiasm to start SCD. Dorothy in CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Hi- I have been planning to write a lengthy posting about our success with SCD in helping control our son's seizures, but I have a bad upper back and typing long emails really makes it sore. BUT I do want to write something tonight so that others can benefit..... The main details--- Our son, Dan, age 21, has gone from 28 life threatening grand mal seizures (easily going into status epilepticus) in the year 2002 down to 1 (yes only 1!) in the year 2004. ( He has averaged over twenty grand mals per year for the past ten years and daily anti-seizure meds make his seizures WORSE, so he hasn't been on any daily anti-seizure meds in 8 years.) The changes we made during the past two years??...In 2003, we started giving him an electrolyte solution ( not sure if the brand is important but we use some from www.kt-solutions.com. It's made by a chemist whose daughter had a lot of seizures). During 2003, Dan only had 11 grand mals, but some were still pretty bad and hard to control even with rectal valium once they started . We continue to use the electrolyte solution. In the fall of 2003, we switched from the GFCF diet to the SCD. I could sense almost right away that we were on our way to success. He had one grand mal during the first week but it was easy to control with rectal valium. A few months after we started SCD, we added methyl B12 shots every three days.(We followed Dr. Neubrander's exact protocol). I really can't say if the methyl B12 shots also helped the seizures, but the shots helped our son talk more and focus better, so we continued them. He had one more easy-to-control grand mal December 2003, but otherwise has really been doing great and steadily improving in all areas. In Sept of 2004, he had one easy-to-control grand mal---his only one this year! At the time he was on Custom Probiotics and not doing well on them (hyper and had trouble sleeping). So we stopped the probiotics and he hasn't had a grand mal since. We are sure that SCD is the main reason he has done so well this year. We have tried so many other things in the past ten years (surgery, the vagus nerve stimulator, IVIG, etc.) with some success with each one but NOTHING LIKE THE SUCCESSS WE'VE HAD IN 2004. It's so great to go a whole year with no ambulance rides or long stints in the ER! Well, my back is letting me know I must end this now. Hope this is helpful. Feel free to email questions----I just have to type shorter replies than this! A special HI to Patti D. and Katera!!! Sorry I am so bad at keeping in touch, but we think about you lots and are sooooo grateful for your postings about Katera that gave us the enthusiasm to start SCD. Dorothy in CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Although I know is especially seeking a report from non-ASD kids, I thought that I would contribute our story nonetheless. We have had significant seizure control for our son, Dakota, since starting SCD. Dakota has gone from hundreds of seizures (some EEGs showed thousands of discharges) a day (complex and simple partial types--absent, ian, food induced, etc; grand mals, and status epilepticus). Due to the profound range of seizure types, he has been given the Lennox-Gastault diagnosis. He also has Landau-Kleffner seizure patterning and severe apraxia. We truly feel that SCD has benefited Dakota in a way like none other. Although we are not expecting a cure (but fight like the blazes to find one for at least one of his conditions if not all), we have seen radical improvement with Dakota. I think for most of us in a complex health situation (especially neurological disorders resulting in brain injury), this diet serves to weed out a lot of the troubles so that we can focus on those areas that just cannot be cured by diet alone. We started with Dr. Rapp and the elimination diet years ago, and then went GFCF over three years ago. Soy and rice made Dakota slip away into seizures and deeper into the spectrum, and any dyes bring on the status epilepticus seizures. The primary problem for Dakota is Neurofibromatosis Type I, a genetic disorder that involves the 17th chromosome. Seizures, autism, learning difficulties, digestive difficulties, scoliosis, and tumors are a few of the associated problems. Dakota's intestinal tumors have greatly improved (less swelling and I know that at least one has been completely resolved) since starting the diet (and worsened under the GFCF diet). Dakota also has Beckwidth -Wideman Syndrome (another genetic disorder that involves the kidneys and more tumors), and his kidneys are no longer enlarged since beginning the diet. His ASD diagnosis is Childhood Disintegrative Disorder with epileptiform regression, and although we still battle with incontinence, he is now moving steadily away from the classic CDD to the other end of the ASD spectrum. This I definitely contribute to the diet and supplements/epsom salt baths. I can only say that we are so grateful to Elaine and everyone on this site for their dedication and commitment to help all of us have heathier kids. It has literally saved our son--I have a loving boy who greets each day with a smile rather than a seizure. A blessing indeed! :-) whole family SCD 1+ year Mom to Dakota (age 7) and (4--and a wonderfully supportive, healthy little brother) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Although I know is especially seeking a report from non-ASD kids, I thought that I would contribute our story nonetheless. We have had significant seizure control for our son, Dakota, since starting SCD. Dakota has gone from hundreds of seizures (some EEGs showed thousands of discharges) a day (complex and simple partial types--absent, ian, food induced, etc; grand mals, and status epilepticus). Due to the profound range of seizure types, he has been given the Lennox-Gastault diagnosis. He also has Landau-Kleffner seizure patterning and severe apraxia. We truly feel that SCD has benefited Dakota in a way like none other. Although we are not expecting a cure (but fight like the blazes to find one for at least one of his conditions if not all), we have seen radical improvement with Dakota. I think for most of us in a complex health situation (especially neurological disorders resulting in brain injury), this diet serves to weed out a lot of the troubles so that we can focus on those areas that just cannot be cured by diet alone. We started with Dr. Rapp and the elimination diet years ago, and then went GFCF over three years ago. Soy and rice made Dakota slip away into seizures and deeper into the spectrum, and any dyes bring on the status epilepticus seizures. The primary problem for Dakota is Neurofibromatosis Type I, a genetic disorder that involves the 17th chromosome. Seizures, autism, learning difficulties, digestive difficulties, scoliosis, and tumors are a few of the associated problems. Dakota's intestinal tumors have greatly improved (less swelling and I know that at least one has been completely resolved) since starting the diet (and worsened under the GFCF diet). Dakota also has Beckwidth -Wideman Syndrome (another genetic disorder that involves the kidneys and more tumors), and his kidneys are no longer enlarged since beginning the diet. His ASD diagnosis is Childhood Disintegrative Disorder with epileptiform regression, and although we still battle with incontinence, he is now moving steadily away from the classic CDD to the other end of the ASD spectrum. This I definitely contribute to the diet and supplements/epsom salt baths. I can only say that we are so grateful to Elaine and everyone on this site for their dedication and commitment to help all of us have heathier kids. It has literally saved our son--I have a loving boy who greets each day with a smile rather than a seizure. A blessing indeed! :-) whole family SCD 1+ year Mom to Dakota (age 7) and (4--and a wonderfully supportive, healthy little brother) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Although I know is especially seeking a report from non-ASD kids, I thought that I would contribute our story nonetheless. We have had significant seizure control for our son, Dakota, since starting SCD. Dakota has gone from hundreds of seizures (some EEGs showed thousands of discharges) a day (complex and simple partial types--absent, ian, food induced, etc; grand mals, and status epilepticus). Due to the profound range of seizure types, he has been given the Lennox-Gastault diagnosis. He also has Landau-Kleffner seizure patterning and severe apraxia. We truly feel that SCD has benefited Dakota in a way like none other. Although we are not expecting a cure (but fight like the blazes to find one for at least one of his conditions if not all), we have seen radical improvement with Dakota. I think for most of us in a complex health situation (especially neurological disorders resulting in brain injury), this diet serves to weed out a lot of the troubles so that we can focus on those areas that just cannot be cured by diet alone. We started with Dr. Rapp and the elimination diet years ago, and then went GFCF over three years ago. Soy and rice made Dakota slip away into seizures and deeper into the spectrum, and any dyes bring on the status epilepticus seizures. The primary problem for Dakota is Neurofibromatosis Type I, a genetic disorder that involves the 17th chromosome. Seizures, autism, learning difficulties, digestive difficulties, scoliosis, and tumors are a few of the associated problems. Dakota's intestinal tumors have greatly improved (less swelling and I know that at least one has been completely resolved) since starting the diet (and worsened under the GFCF diet). Dakota also has Beckwidth -Wideman Syndrome (another genetic disorder that involves the kidneys and more tumors), and his kidneys are no longer enlarged since beginning the diet. His ASD diagnosis is Childhood Disintegrative Disorder with epileptiform regression, and although we still battle with incontinence, he is now moving steadily away from the classic CDD to the other end of the ASD spectrum. This I definitely contribute to the diet and supplements/epsom salt baths. I can only say that we are so grateful to Elaine and everyone on this site for their dedication and commitment to help all of us have heathier kids. It has literally saved our son--I have a loving boy who greets each day with a smile rather than a seizure. A blessing indeed! :-) whole family SCD 1+ year Mom to Dakota (age 7) and (4--and a wonderfully supportive, healthy little brother) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Wow!! Thank you so much for sharing that. I guess I wanted non ASD info b/c my daughter isn't true " autism " . It's sure easy to forget that ASD can occur in other circumstances. I hope Dakota continues to improve! > Although I know is especially seeking a report from non- ASD kids, I > thought that I would contribute our story nonetheless. We have had > significant seizure control for our son, Dakota, since starting SCD. > Dakota has gone from hundreds of seizures (some EEGs showed thousands of > discharges) a day (complex and simple partial types--absent, ian, > food induced, etc; grand mals, and status epilepticus). Due to the profound > range of seizure types, he has been given the Lennox-Gastault diagnosis. He > also has Landau-Kleffner seizure patterning and severe apraxia. We truly > feel that SCD has benefited Dakota in a way like none other. Although we > are not expecting a cure (but fight like the blazes to find one for at least > one of his conditions if not all), we have seen radical improvement with > Dakota. I think for most of us in a complex health situation (especially > neurological disorders resulting in brain injury), this diet serves to weed > out a lot of the troubles so that we can focus on those areas that just > cannot be cured by diet alone. We started with Dr. Rapp and the elimination > diet years ago, and then went GFCF over three years ago. Soy and rice made > Dakota slip away into seizures and deeper into the spectrum, and any dyes > bring on the status epilepticus seizures. The primary problem for Dakota is > Neurofibromatosis Type I, a genetic disorder that involves the 17th > chromosome. Seizures, autism, learning difficulties, digestive > difficulties, scoliosis, and tumors are a few of the associated problems. > Dakota's intestinal tumors have greatly improved (less swelling and I know > that at least one has been completely resolved) since starting the diet > (and worsened under the GFCF diet). Dakota also has Beckwidth - Wideman > Syndrome (another genetic disorder that involves the kidneys and more > tumors), and his kidneys are no longer enlarged since beginning the diet. > His ASD diagnosis is Childhood Disintegrative Disorder with epileptiform > regression, and although we still battle with incontinence, he is now moving > steadily away from the classic CDD to the other end of the ASD spectrum. > This I definitely contribute to the diet and supplements/epsom salt baths. > I can only say that we are so grateful to Elaine and everyone on this site > for their dedication and commitment to help all of us have heathier kids. > It has literally saved our son--I have a loving boy who greets each day with > a smile rather than a seizure. A blessing indeed! :-) > > > whole family SCD 1+ year > Mom to Dakota (age 7) > and (4--and a wonderfully supportive, healthy little brother) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Wow!! Thank you so much for sharing that. I guess I wanted non ASD info b/c my daughter isn't true " autism " . It's sure easy to forget that ASD can occur in other circumstances. I hope Dakota continues to improve! > Although I know is especially seeking a report from non- ASD kids, I > thought that I would contribute our story nonetheless. We have had > significant seizure control for our son, Dakota, since starting SCD. > Dakota has gone from hundreds of seizures (some EEGs showed thousands of > discharges) a day (complex and simple partial types--absent, ian, > food induced, etc; grand mals, and status epilepticus). Due to the profound > range of seizure types, he has been given the Lennox-Gastault diagnosis. He > also has Landau-Kleffner seizure patterning and severe apraxia. We truly > feel that SCD has benefited Dakota in a way like none other. Although we > are not expecting a cure (but fight like the blazes to find one for at least > one of his conditions if not all), we have seen radical improvement with > Dakota. I think for most of us in a complex health situation (especially > neurological disorders resulting in brain injury), this diet serves to weed > out a lot of the troubles so that we can focus on those areas that just > cannot be cured by diet alone. We started with Dr. Rapp and the elimination > diet years ago, and then went GFCF over three years ago. Soy and rice made > Dakota slip away into seizures and deeper into the spectrum, and any dyes > bring on the status epilepticus seizures. The primary problem for Dakota is > Neurofibromatosis Type I, a genetic disorder that involves the 17th > chromosome. Seizures, autism, learning difficulties, digestive > difficulties, scoliosis, and tumors are a few of the associated problems. > Dakota's intestinal tumors have greatly improved (less swelling and I know > that at least one has been completely resolved) since starting the diet > (and worsened under the GFCF diet). Dakota also has Beckwidth - Wideman > Syndrome (another genetic disorder that involves the kidneys and more > tumors), and his kidneys are no longer enlarged since beginning the diet. > His ASD diagnosis is Childhood Disintegrative Disorder with epileptiform > regression, and although we still battle with incontinence, he is now moving > steadily away from the classic CDD to the other end of the ASD spectrum. > This I definitely contribute to the diet and supplements/epsom salt baths. > I can only say that we are so grateful to Elaine and everyone on this site > for their dedication and commitment to help all of us have heathier kids. > It has literally saved our son--I have a loving boy who greets each day with > a smile rather than a seizure. A blessing indeed! :-) > > > whole family SCD 1+ year > Mom to Dakota (age 7) > and (4--and a wonderfully supportive, healthy little brother) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Wow!! Thank you so much for sharing that. I guess I wanted non ASD info b/c my daughter isn't true " autism " . It's sure easy to forget that ASD can occur in other circumstances. I hope Dakota continues to improve! > Although I know is especially seeking a report from non- ASD kids, I > thought that I would contribute our story nonetheless. We have had > significant seizure control for our son, Dakota, since starting SCD. > Dakota has gone from hundreds of seizures (some EEGs showed thousands of > discharges) a day (complex and simple partial types--absent, ian, > food induced, etc; grand mals, and status epilepticus). Due to the profound > range of seizure types, he has been given the Lennox-Gastault diagnosis. He > also has Landau-Kleffner seizure patterning and severe apraxia. We truly > feel that SCD has benefited Dakota in a way like none other. Although we > are not expecting a cure (but fight like the blazes to find one for at least > one of his conditions if not all), we have seen radical improvement with > Dakota. I think for most of us in a complex health situation (especially > neurological disorders resulting in brain injury), this diet serves to weed > out a lot of the troubles so that we can focus on those areas that just > cannot be cured by diet alone. We started with Dr. Rapp and the elimination > diet years ago, and then went GFCF over three years ago. Soy and rice made > Dakota slip away into seizures and deeper into the spectrum, and any dyes > bring on the status epilepticus seizures. The primary problem for Dakota is > Neurofibromatosis Type I, a genetic disorder that involves the 17th > chromosome. Seizures, autism, learning difficulties, digestive > difficulties, scoliosis, and tumors are a few of the associated problems. > Dakota's intestinal tumors have greatly improved (less swelling and I know > that at least one has been completely resolved) since starting the diet > (and worsened under the GFCF diet). Dakota also has Beckwidth - Wideman > Syndrome (another genetic disorder that involves the kidneys and more > tumors), and his kidneys are no longer enlarged since beginning the diet. > His ASD diagnosis is Childhood Disintegrative Disorder with epileptiform > regression, and although we still battle with incontinence, he is now moving > steadily away from the classic CDD to the other end of the ASD spectrum. > This I definitely contribute to the diet and supplements/epsom salt baths. > I can only say that we are so grateful to Elaine and everyone on this site > for their dedication and commitment to help all of us have heathier kids. > It has literally saved our son--I have a loving boy who greets each day with > a smile rather than a seizure. A blessing indeed! :-) > > > whole family SCD 1+ year > Mom to Dakota (age 7) > and (4--and a wonderfully supportive, healthy little brother) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Thanks! He is doing so well--we still have set backs, but nothing like before. I forgot to mention that qe are down to only about a handful of partial seizures a week and no grand mals in quite some time. We still have to use seizure meds (tried to wean him off, but they came back so strong immediately), but SCD has been the one thing that has allowed so many of the noncontrollable seizures to subside. Good luck with your daughter's progress. Re: Seizure info > > > Wow!! Thank you so much for sharing that. I guess I wanted non ASD > info b/c my daughter isn't true " autism " . It's sure easy to forget > that ASD can occur in other circumstances. I hope Dakota continues > to improve! > > > Quote Link to comment Share on other sites More sharing options...
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