Guest guest Posted January 1, 1970 Report Share Posted January 1, 1970 has asked if I can compile some of the answers. I would be glad to throw something together. Anybody else like to respond? ashley ---------- To: ketogenic Subject: questions Date: Tue, Jun 18, 2002, 9:23 AM Hi everyone, I've got some questions--we're curious about how everyone has done on the diet. 1. How long have you been on the diet? 2. How long did it take to work? 3. What ratio are you on? 4. What type of seizures does your child have? 5. How much reduction in seizures have you seen? (i.e., pre-diet, 10 per day, down to 1 per day) 6. Is your child still on medication? 7. Does your child have a diagnosis? We're debating switching ratios. is currently on a 4:1, but seems to keep his ketones pretty high, even when there's been a " slip " . We see our dietician and neuro next Wednesday and we would love to have some other examples to help us make our decisions (weaning meds & ratio). Our answers: 1. we've been on the diet since 5/13/02 2. Not working yet (seizure-wise), but have seen great improvements in mood, alertness & interactions 3. we're on 4:1 4. alex has all types: mostly tonic, head drops, drop attacks, but also atypical absence, occasional myoclonics & tonic-clonics 5. Pre-diet had anywhere from 4-12 per day (drop attacks, tonic & head drops) and unknown number of atypical absence. We're seeing 4-7 per day, but mostly less severe. 6. is on 100mg per day of Zonegran, .5mg Klonipin 7. has been diagnosed with Lennox-Gastaut Thanks for all your help! ashley " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 1970 Report Share Posted January 1, 1970 has asked if I can compile some of the answers. I would be glad to throw something together. Anybody else like to respond? ashley ---------- To: ketogenic Subject: questions Date: Tue, Jun 18, 2002, 9:23 AM Hi everyone, I've got some questions--we're curious about how everyone has done on the diet. 1. How long have you been on the diet? 2. How long did it take to work? 3. What ratio are you on? 4. What type of seizures does your child have? 5. How much reduction in seizures have you seen? (i.e., pre-diet, 10 per day, down to 1 per day) 6. Is your child still on medication? 7. Does your child have a diagnosis? We're debating switching ratios. is currently on a 4:1, but seems to keep his ketones pretty high, even when there's been a " slip " . We see our dietician and neuro next Wednesday and we would love to have some other examples to help us make our decisions (weaning meds & ratio). Our answers: 1. we've been on the diet since 5/13/02 2. Not working yet (seizure-wise), but have seen great improvements in mood, alertness & interactions 3. we're on 4:1 4. alex has all types: mostly tonic, head drops, drop attacks, but also atypical absence, occasional myoclonics & tonic-clonics 5. Pre-diet had anywhere from 4-12 per day (drop attacks, tonic & head drops) and unknown number of atypical absence. We're seeing 4-7 per day, but mostly less severe. 6. is on 100mg per day of Zonegran, .5mg Klonipin 7. has been diagnosed with Lennox-Gastaut Thanks for all your help! ashley " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 What lamictal dose is she on? Re: questions > Hi , > More answers: > 1. We've been on the diet for 41 days. > 2. Allie had her last seizure on day 5. > 3. Ratio is 3:1 > 4. Seizure types: myoclonic-atonic (combined), myoclonic and atonic alone, > atypical absence, and generalized TC > 5. We went from well over 100 seizures daily to none that I've seen (in > fairness, she had started Topamax as a " stop gap " about 5 weeks prior to > starting the diet - but broke through at progressively higher doses, but at > the time we started the diet, she was only having 5-15 seizures daily). > 6. She is still on Topamax and Lamictal > 7. Diagnosis is Myoclonic-Astatic Epilepsy (Doose Syndrome) > > Chris > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 In a message dated 6/18/2002 9:22:52 PM Eastern Daylight Time, ashleygill@... writes: << 1. How long have you been on the diet? 2. How long did it take to work? 3. What ratio are you on? 4. What type of seizures does your child have? 5. How much reduction in seizures have you seen? (i.e., pre-diet, 10 per day, down to 1 per day) 6. Is your child still on medication? 7. Does your child have a diagnosis? >> Hi , I'll answer, too, but it may not be as helpful as others who've been on the diet longer...I'm really looking forward to people's answers myself! Molly started the diet only 2 weeks ago, 6/3/02/ We started on a 3:1 ratio, but had not seen a reduction in seizures, just in how long they last, so we talked to the neuro and dietician yesterday and have increased to 3.5:1. (And wouldn't you know it, she had terrible, intense, long lasting seizures last night!...However, I guess I'm a slow learned because yesterday we also added L-carnitine and sunflower oil!!!! So today I am taking those out, so we are JUST dealing with a ratio change!) We have seen an increase in mood and alertness, but there are also days of stiffness/irritability and days of sleepiness (those are the days her mood is best..when she's awake, that is!) Molly has infantile spasms every time she wakes (5-6 times day and night) also when she's tired or after she startles. They look like a series of " crunches " . She also has myoclonic jerks/tics all day long, and what I think may be atypical absense...eyes fluttering, mouth open, head back, no loss of consious? These " littler " seizures showed up on the EEG, but the neuro had a hard time on video " seeing " what Molly was actually doing (to her it looked like she was just yawning, but clearly she is not.) She is on no meds. She does have diagnosis of brain injury, cerebral palsy, infantile spasms, cortical visual impairment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2008 Report Share Posted July 18, 2008 I don't have the ie book I went on line at amazon.com and there are several versions of the book which one does everybody use hopefulwishful Quote Link to comment Share on other sites More sharing options...
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