Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Thanks for the information Kathy. I am playing phone tag with our neuro right now but have decided to decrease the depakote by one capsule since he is having such stomach problems. I do not want to start any new drugs right now thats for sure! Since we don't have our appt. at the ketocenter until the end of Sept., I was wondering if anyone could recommend a good way to start heading towards the keto way of eating so that its not such a shock to lin? I figured I would stop buying any junk food, cookies, sugar, things like that. We probably eat healthier than the average American diet but cookies are pretty much a mainstay. Also, what do you do about your other children? I just can't picture lin accepting the fact that his 2 year old sister can have cookies and he can't. I figure cookies and sweets will just have to be off limit for her also. She loves fruit so that will be a good substitute. Kathy Welcome Kathy & lin > Hi Kathy, > Welcome to the list. We started on the diet right after he turned > 5. We had been through about 8 drugs & the only thing we got from them > was side-effects. The diet has been our miracle, so you can see how I > highly recommend it. You've picked a good starting place - the Freeman > book. It will explain the diet thoroughly, but don't think the mealplans > are limited to mayo and lettuce ( doesn't like either). That is the > only misconception I came away with after reading it. > Stick around our list, you will learn a lot. You have one smart Doc > because he is open to the diet (many neuros dismiss the diet because they > are uneducated on it & they don't want to fool with it). Also, he feels > the fast is unnecessary, which I agree with 100%. We started without a > fast and went into ketosis nice and easy. > Many docs don't like giving Topamax with the diet because it carries a > risk of kidney stones (as does the diet) and it can suppress the appetite > (as does the ketosis of the diet). If you are serious about trying the > diet (and it sounds like you are), I'd hold off on adding any meds. In > some kids, the diet will work better once the meds are weaned. The more > he is on, the more you'll probably want to wean. I'm so glad your are > looking into the diet so soon after the seizures began (I wish I had > looked into the diet 6 months after 's first seizure). > Good luck on your research. Please ask any questions you have and > you'll get a full prospective from the wonderful parents on this list. > Once again, welcome to our list. > Kathy in Tennessee > Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced > Mom to 'lil sis, a - 3 > " Even to your old age and gray hairs I am He, I am He who will sustain > you. I have made you and I will carry you; I will sustain you and I will > rescue you. " > Isaiah 46:4 > > > > On Wed, 15 Aug 2001 15:21:21 -0500 " Kathy Greenwood " > writes: > > I have just joined this list as I need to find out more about the > > ketogenic diet. My son, lin, is 3 1/2 years old. He had his > > first seizure in January this year and has been diagnosed with > > idiopathic generalized seizures. He was just having tonic-clonic > > seizures but now has myoclonic, absence and atonic seizures. The > > atonic (drop) seizures are the worst and he has anywhere from 5 - 15 > > a day. He was on Lamictal but that gave him the shakes and didn't > > control his seizures. Then switched to zonegran but it didn't > > control his seizures and we maxed out on the dosage. Now he is on > > depakote and we are maxing out on it and the seizures are still with > > us. Our ped. neurologist has suggested the keto diet but he doesn't > > think hospitalization is needed and the dietician he sent me to > > seemed to know less about it than I do. I found a keto center in > > Dallas (6 hours away from us) and have an appt. for the end of > > September for a consultation. Until then, I am hoping to learn more > > about the diet and get prepared. I bought the latest Hopkins > > book. I have seen discussion here and on another list that depakote > > and the ketogenic diet do not co-exist well together. Are there any > > drugs that do go better with the diet? Our neuro is suggesting > > Topamax as the next drug to try. lin actually did best on a > > combination of zonegran and low dose of depakote but our neuro > > wanted to push the depakote by itself and see if it would work. We > > are currently up to 9 capsules of the sprinkles and its not working > > and he's having lots of stomach problems so I am wanting to start > > cutting back on it. > > > > I saw a few posts from people saying that if you didn't like your > > ped. neuro. that you should just go to another one. Thats not so > > easy depending on what part of the country you are in. There is > > exactly ONE ped. neuro. here in NE Oklahoma and the keto center in > > Dallas (I called Hopkins to find it) is the only one nearby. > > There isn't any in Ok, MO, KS or Arkansas. > > > > I'm looking forward to learning more from you all!! > > > > thanks, > > Kathy > > ________________________________________________________________ > 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. > > " 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 August 16, 2001 Report Share Posted August 16, 2001 Kathy, I'll comment on some of the stuff you mentioned. > Since we don't have our appt. at the ketocenter > until the end of Sept., I was wondering if anyone could recommend a good > way to start heading towards the keto way of eating so that its not such a > shock to lin? ............................Well, when you start the diet, his body will change the way it obtains energy. The typical body burns mostly carbs for energy. Since the diet deprives the body of many carbs, it is forced to find another source of energy. It turns to fat. When it burns the fat, it produces a by-product (like an ash) called ketones. Docs think these ketones act as a drug to the brain and abate the seizures. This is theory. Anyway, bottom line, the body will not begin burning fat until it can't find enough carbs. Our experience (without the fast) was that 's body made the cross over as smooth as silk. Sure, you could (probably a good idea) try to avoid sugars, soda pop, etc. But, the reason is more for psychological reasons for the child. This would be a good time to experiment with more fruits and veggies. See what he will eat because when you start the diet, you will want to make good choices on the few carbs he will get (fresh fruits and veggies). >I figured I would stop buying any junk food, cookies, > sugar, things like that. We probably eat healthier than the average > American diet but cookies are pretty much a mainstay. Also, what do you do about > your other children? ...................... has totally amazed us on how compliant he is on the diet (trust me this is not a compliant child - bigtime behavior problems). 's sister was 2 when we started the diet. Anyway, for the first few months on the diet, I didn't bring french fries, pizza, spaghetti into the house - his favorites. But after a few months, I would slowly bring them back around and was okay with it. We now will go to Mcs to eat - we eat burgers and fries and eats his chicken, squash and strawberries - then he can go play on the play structure - he never even looks at a french fry. He understood that he could only eat what is on his plate (I have tupperware plates that are ONLY his). I was amazed that he was fine with it. These younger kids can just adjust so much better than older, say teenagers (course some teenagers do great). I still don't have the heart to bring Reeces Cups back into the house (his VERY favorite). When you make the commitment to the diet, it is a family commitment. If the diet works, the things which are sacrificed seem so small in comparision. Most parents may use the phrase " I'd give my left arm " for this or that. We mothers of children with seizures, would willingly give up any arm (or whatever) to achieve seizure control. Especially those of us who find our way to the diet (no hope in the medicines). I'd get rid of the cookies now so maybe he'll forget about them (somewhat) before the diet begins. BTW, there are keto cookies which you could make for him. No, they sure ain't Oreos, but absolutely loves them. Don't under estimate lin - I bet he will adjust fine. I read somewhere that kids between 3 and 6 are easiest, because they adjust so quickly. I know this is a nerve-wracking time - waiting to initiate. Keep learning and researching, your anxiousness will turn to excitement. Be sure to remind us when it is time to initiate, many of us will lift you up to the LORD in prayer during your initiation. Kathy in Tennessee Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced Mom to 'lil sis, a - 3 " Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. " Isaiah 46:4 I just can't picture lin accepting the fact > that his 2 > year old sister can have cookies and he can't. I figure cookies and > sweets > will just have to be off limit for her also. She loves fruit so > that will > be a good substitute. > > Kathy > > Welcome Kathy & lin > > > > Hi Kathy, > > Welcome to the list. We started on the diet right after he > turned > > 5. We had been through about 8 drugs & the only thing we got from > them > > was side-effects. The diet has been our miracle, so you can see > how I > > highly recommend it. You've picked a good starting place - the > Freeman > > book. It will explain the diet thoroughly, but don't think the > mealplans > > are limited to mayo and lettuce ( doesn't like either). That > is the > > only misconception I came away with after reading it. > > Stick around our list, you will learn a lot. You have one smart > Doc > > because he is open to the diet (many neuros dismiss the diet > because they > > are uneducated on it & they don't want to fool with it). Also, he > feels > > the fast is unnecessary, which I agree with 100%. We started > without a > > fast and went into ketosis nice and easy. > > Many docs don't like giving Topamax with the diet because it > carries a > > risk of kidney stones (as does the diet) and it can suppress the > appetite > > (as does the ketosis of the diet). If you are serious about > trying the > > diet (and it sounds like you are), I'd hold off on adding any > meds. In > > some kids, the diet will work better once the meds are weaned. > The more > > he is on, the more you'll probably want to wean. I'm so glad your > are > > looking into the diet so soon after the seizures began (I wish I > had > > looked into the diet 6 months after 's first seizure). > > Good luck on your research. Please ask any questions you have and > > you'll get a full prospective from the wonderful parents on this > list. > > Once again, welcome to our list. > > Kathy in Tennessee > > Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% > reduced > > Mom to 'lil sis, a - 3 > > " Even to your old age and gray hairs I am He, I am He who will > sustain > > you. I have made you and I will carry you; I will sustain you and > I will > > rescue you. " > > Isaiah 46:4 > > > > > > > > On Wed, 15 Aug 2001 15:21:21 -0500 " Kathy Greenwood " > > > writes: > > > I have just joined this list as I need to find out more about > the > > > ketogenic diet. My son, lin, is 3 1/2 years old. He had > his > > > first seizure in January this year and has been diagnosed with > > > idiopathic generalized seizures. He was just having > tonic-clonic > > > seizures but now has myoclonic, absence and atonic seizures. > The > > > atonic (drop) seizures are the worst and he has anywhere from 5 > - 15 > > > a day. He was on Lamictal but that gave him the shakes and > didn't > > > control his seizures. Then switched to zonegran but it didn't > > > control his seizures and we maxed out on the dosage. Now he is > on > > > depakote and we are maxing out on it and the seizures are still > with > > > us. Our ped. neurologist has suggested the keto diet but he > doesn't > > > think hospitalization is needed and the dietician he sent me to > > > seemed to know less about it than I do. I found a keto center > in > > > Dallas (6 hours away from us) and have an appt. for the end of > > > September for a consultation. Until then, I am hoping to learn > more > > > about the diet and get prepared. I bought the latest > Hopkins > > > book. I have seen discussion here and on another list that > depakote > > > and the ketogenic diet do not co-exist well together. Are there > any > > > drugs that do go better with the diet? Our neuro is suggesting > > > Topamax as the next drug to try. lin actually did best on a > > > combination of zonegran and low dose of depakote but our neuro > > > wanted to push the depakote by itself and see if it would work. > We > > > are currently up to 9 capsules of the sprinkles and its not > working > > > and he's having lots of stomach problems so I am wanting to > start > > > cutting back on it. > > > > > > I saw a few posts from people saying that if you didn't like > your > > > ped. neuro. that you should just go to another one. Thats not > so > > > easy depending on what part of the country you are in. There is > > > exactly ONE ped. neuro. here in NE Oklahoma and the keto center > in > > > Dallas (I called Hopkins to find it) is the only one > nearby. > > > There isn't any in Ok, MO, KS or Arkansas. > > > > > > I'm looking forward to learning more from you all!! > > > > > > thanks, > > > Kathy > > > > ________________________________________________________________ > > 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. > > > > " 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 August 16, 2001 Report Share Posted August 16, 2001 Kathy -- I had the same concerns. At first we really limited 's younger sister and ourselves. My husband -- bless his heart -- was determined to eat a modified version of whatever ate. We tried to go out to eat the first week and it was a disaster. I cried all the way home because was so distraught and desparate. Gradually, she became accostomed to her new way of eating and everyone began to ease up. We've even eaten pizza with her. . .and she's been fine. I've kind of held out on letting her sister have chicken nuggets and french fries -- but I actually think she'd be okay with that, too. We try to make the diet not a big deal. . .there are things all of us eat that none of the others eat. This is the food needs right now to keep her body healthy and she's very accepting of that. I know it sounds crazy. . .I would never have believed it months ago. . ..but kids really do adapt. I've also come up with lots of adaptations -- fried zucchini strips for french fries, hot dog at the ball game (that I bring), peanut butter cookies (in the recipe files -- peanut butter, butter and egg) for a snack and buy some that look almost exactly like them for her to bring on her snack day. . . you'll get great tips on this list. Best of luck.--D *** Also, what > do you do about your other children? I just can't picture lin accepting the fact that his 2 year old sister can have cookies and he can't. I > figure cookies and sweets will just have to be off limit for her also. She loves fruit so that will > be a good substitute. ===== DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ " I know God would never give me more than I can handle. . .I just wish he didn't trust me so much. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Kathy -- I had the same concerns. At first we really limited 's younger sister and ourselves. My husband -- bless his heart -- was determined to eat a modified version of whatever ate. We tried to go out to eat the first week and it was a disaster. I cried all the way home because was so distraught and desparate. Gradually, she became accostomed to her new way of eating and everyone began to ease up. We've even eaten pizza with her. . .and she's been fine. I've kind of held out on letting her sister have chicken nuggets and french fries -- but I actually think she'd be okay with that, too. We try to make the diet not a big deal. . .there are things all of us eat that none of the others eat. This is the food needs right now to keep her body healthy and she's very accepting of that. I know it sounds crazy. . .I would never have believed it months ago. . ..but kids really do adapt. I've also come up with lots of adaptations -- fried zucchini strips for french fries, hot dog at the ball game (that I bring), peanut butter cookies (in the recipe files -- peanut butter, butter and egg) for a snack and buy some that look almost exactly like them for her to bring on her snack day. . . you'll get great tips on this list. Best of luck.--D *** Also, what > do you do about your other children? I just can't picture lin accepting the fact that his 2 year old sister can have cookies and he can't. I > figure cookies and sweets will just have to be off limit for her also. She loves fruit so that will > be a good substitute. ===== DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ " I know God would never give me more than I can handle. . .I just wish he didn't trust me so much. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Kathy -- I had the same concerns. At first we really limited 's younger sister and ourselves. My husband -- bless his heart -- was determined to eat a modified version of whatever ate. We tried to go out to eat the first week and it was a disaster. I cried all the way home because was so distraught and desparate. Gradually, she became accostomed to her new way of eating and everyone began to ease up. We've even eaten pizza with her. . .and she's been fine. I've kind of held out on letting her sister have chicken nuggets and french fries -- but I actually think she'd be okay with that, too. We try to make the diet not a big deal. . .there are things all of us eat that none of the others eat. This is the food needs right now to keep her body healthy and she's very accepting of that. I know it sounds crazy. . .I would never have believed it months ago. . ..but kids really do adapt. I've also come up with lots of adaptations -- fried zucchini strips for french fries, hot dog at the ball game (that I bring), peanut butter cookies (in the recipe files -- peanut butter, butter and egg) for a snack and buy some that look almost exactly like them for her to bring on her snack day. . . you'll get great tips on this list. Best of luck.--D *** Also, what > do you do about your other children? I just can't picture lin accepting the fact that his 2 year old sister can have cookies and he can't. I > figure cookies and sweets will just have to be off limit for her also. She loves fruit so that will > be a good substitute. ===== DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ " I know God would never give me more than I can handle. . .I just wish he didn't trust me so much. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 Thanks for the post Kathy!! That is wonderful that has adjusted so well! I hope lin does as well! take care, Kathy Welcome Kathy & lin > > > > > > > Hi Kathy, > > > Welcome to the list. We started on the diet right after he > > turned > > > 5. We had been through about 8 drugs & the only thing we got from > > them > > > was side-effects. The diet has been our miracle, so you can see > > how I > > > highly recommend it. You've picked a good starting place - the > > Freeman > > > book. It will explain the diet thoroughly, but don't think the > > mealplans > > > are limited to mayo and lettuce ( doesn't like either). That > > is the > > > only misconception I came away with after reading it. > > > Stick around our list, you will learn a lot. You have one smart > > Doc > > > because he is open to the diet (many neuros dismiss the diet > > because they > > > are uneducated on it & they don't want to fool with it). Also, he > > feels > > > the fast is unnecessary, which I agree with 100%. We started > > without a > > > fast and went into ketosis nice and easy. > > > Many docs don't like giving Topamax with the diet because it > > carries a > > > risk of kidney stones (as does the diet) and it can suppress the > > appetite > > > (as does the ketosis of the diet). If you are serious about > > trying the > > > diet (and it sounds like you are), I'd hold off on adding any > > meds. In > > > some kids, the diet will work better once the meds are weaned. > > The more > > > he is on, the more you'll probably want to wean. I'm so glad your > > are > > > looking into the diet so soon after the seizures began (I wish I > > had > > > looked into the diet 6 months after 's first seizure). > > > Good luck on your research. Please ask any questions you have and > > > you'll get a full prospective from the wonderful parents on this > > list. > > > Once again, welcome to our list. > > > Kathy in Tennessee > > > Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% > > reduced > > > Mom to 'lil sis, a - 3 > > > " Even to your old age and gray hairs I am He, I am He who will > > sustain > > > you. I have made you and I will carry you; I will sustain you and > > I will > > > rescue you. " > > > Isaiah 46:4 > > > > > > > > > > > > On Wed, 15 Aug 2001 15:21:21 -0500 " Kathy Greenwood " > > > > > writes: > > > > I have just joined this list as I need to find out more about > > the > > > > ketogenic diet. My son, lin, is 3 1/2 years old. He had > > his > > > > first seizure in January this year and has been diagnosed with > > > > idiopathic generalized seizures. He was just having > > tonic-clonic > > > > seizures but now has myoclonic, absence and atonic seizures. > > The > > > > atonic (drop) seizures are the worst and he has anywhere from 5 > > - 15 > > > > a day. He was on Lamictal but that gave him the shakes and > > didn't > > > > control his seizures. Then switched to zonegran but it didn't > > > > control his seizures and we maxed out on the dosage. Now he is > > on > > > > depakote and we are maxing out on it and the seizures are still > > with > > > > us. Our ped. neurologist has suggested the keto diet but he > > doesn't > > > > think hospitalization is needed and the dietician he sent me to > > > > seemed to know less about it than I do. I found a keto center > > in > > > > Dallas (6 hours away from us) and have an appt. for the end of > > > > September for a consultation. Until then, I am hoping to learn > > more > > > > about the diet and get prepared. I bought the latest > > Hopkins > > > > book. I have seen discussion here and on another list that > > depakote > > > > and the ketogenic diet do not co-exist well together. Are there > > any > > > > drugs that do go better with the diet? Our neuro is suggesting > > > > Topamax as the next drug to try. lin actually did best on a > > > > combination of zonegran and low dose of depakote but our neuro > > > > wanted to push the depakote by itself and see if it would work. > > We > > > > are currently up to 9 capsules of the sprinkles and its not > > working > > > > and he's having lots of stomach problems so I am wanting to > > start > > > > cutting back on it. > > > > > > > > I saw a few posts from people saying that if you didn't like > > your > > > > ped. neuro. that you should just go to another one. Thats not > > so > > > > easy depending on what part of the country you are in. There is > > > > exactly ONE ped. neuro. here in NE Oklahoma and the keto center > > in > > > > Dallas (I called Hopkins to find it) is the only one > > nearby. > > > > There isn't any in Ok, MO, KS or Arkansas. > > > > > > > > I'm looking forward to learning more from you all!! > > > > > > > > thanks, > > > > Kathy > > > > > > ________________________________________________________________ > > > 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. > > > > > > " 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 August 17, 2001 Report Share Posted August 17, 2001 Thanks for the post Kathy!! That is wonderful that has adjusted so well! I hope lin does as well! take care, Kathy Welcome Kathy & lin > > > > > > > Hi Kathy, > > > Welcome to the list. We started on the diet right after he > > turned > > > 5. We had been through about 8 drugs & the only thing we got from > > them > > > was side-effects. The diet has been our miracle, so you can see > > how I > > > highly recommend it. You've picked a good starting place - the > > Freeman > > > book. It will explain the diet thoroughly, but don't think the > > mealplans > > > are limited to mayo and lettuce ( doesn't like either). That > > is the > > > only misconception I came away with after reading it. > > > Stick around our list, you will learn a lot. You have one smart > > Doc > > > because he is open to the diet (many neuros dismiss the diet > > because they > > > are uneducated on it & they don't want to fool with it). Also, he > > feels > > > the fast is unnecessary, which I agree with 100%. We started > > without a > > > fast and went into ketosis nice and easy. > > > Many docs don't like giving Topamax with the diet because it > > carries a > > > risk of kidney stones (as does the diet) and it can suppress the > > appetite > > > (as does the ketosis of the diet). If you are serious about > > trying the > > > diet (and it sounds like you are), I'd hold off on adding any > > meds. In > > > some kids, the diet will work better once the meds are weaned. > > The more > > > he is on, the more you'll probably want to wean. I'm so glad your > > are > > > looking into the diet so soon after the seizures began (I wish I > > had > > > looked into the diet 6 months after 's first seizure). > > > Good luck on your research. Please ask any questions you have and > > > you'll get a full prospective from the wonderful parents on this > > list. > > > Once again, welcome to our list. > > > Kathy in Tennessee > > > Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% > > reduced > > > Mom to 'lil sis, a - 3 > > > " Even to your old age and gray hairs I am He, I am He who will > > sustain > > > you. I have made you and I will carry you; I will sustain you and > > I will > > > rescue you. " > > > Isaiah 46:4 > > > > > > > > > > > > On Wed, 15 Aug 2001 15:21:21 -0500 " Kathy Greenwood " > > > > > writes: > > > > I have just joined this list as I need to find out more about > > the > > > > ketogenic diet. My son, lin, is 3 1/2 years old. He had > > his > > > > first seizure in January this year and has been diagnosed with > > > > idiopathic generalized seizures. He was just having > > tonic-clonic > > > > seizures but now has myoclonic, absence and atonic seizures. > > The > > > > atonic (drop) seizures are the worst and he has anywhere from 5 > > - 15 > > > > a day. He was on Lamictal but that gave him the shakes and > > didn't > > > > control his seizures. Then switched to zonegran but it didn't > > > > control his seizures and we maxed out on the dosage. Now he is > > on > > > > depakote and we are maxing out on it and the seizures are still > > with > > > > us. Our ped. neurologist has suggested the keto diet but he > > doesn't > > > > think hospitalization is needed and the dietician he sent me to > > > > seemed to know less about it than I do. I found a keto center > > in > > > > Dallas (6 hours away from us) and have an appt. for the end of > > > > September for a consultation. Until then, I am hoping to learn > > more > > > > about the diet and get prepared. I bought the latest > > Hopkins > > > > book. I have seen discussion here and on another list that > > depakote > > > > and the ketogenic diet do not co-exist well together. Are there > > any > > > > drugs that do go better with the diet? Our neuro is suggesting > > > > Topamax as the next drug to try. lin actually did best on a > > > > combination of zonegran and low dose of depakote but our neuro > > > > wanted to push the depakote by itself and see if it would work. > > We > > > > are currently up to 9 capsules of the sprinkles and its not > > working > > > > and he's having lots of stomach problems so I am wanting to > > start > > > > cutting back on it. > > > > > > > > I saw a few posts from people saying that if you didn't like > > your > > > > ped. neuro. that you should just go to another one. Thats not > > so > > > > easy depending on what part of the country you are in. There is > > > > exactly ONE ped. neuro. here in NE Oklahoma and the keto center > > in > > > > Dallas (I called Hopkins to find it) is the only one > > nearby. > > > > There isn't any in Ok, MO, KS or Arkansas. > > > > > > > > I'm looking forward to learning more from you all!! > > > > > > > > thanks, > > > > Kathy > > > > > > ________________________________________________________________ > > > 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. > > > > > > " 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 August 17, 2001 Report Share Posted August 17, 2001 Thanks DeEtte! Its a relief to hear that we will adjust to this. Its just got to be better than this drug roller coaster! Kathy Re: Welcome Kathy & lin > Kathy -- I had the same concerns. At first we really > limited 's younger sister and ourselves. My > husband -- bless his heart -- was determined to eat a > modified version of whatever ate. We tried to go > out to eat the first week and it was a disaster. I > cried all the way home because was so distraught > and desparate. Gradually, she became accostomed to > her new way of eating and everyone began to ease up. > We've even eaten pizza with her. . .and she's been > fine. I've kind of held out on letting her sister > have chicken nuggets and french fries -- but I > actually think she'd be okay with that, too. We try > to make the diet not a big deal. . .there are things > all of us eat that none of the others eat. This is > the food needs right now to keep her body healthy > and she's very accepting of that. I know it sounds > crazy. . .I would never have believed it months ago. . > .but kids really do adapt. I've also come up with > lots of adaptations -- fried zucchini strips for > french fries, hot dog at the ball game (that I bring), > peanut butter cookies (in the recipe files -- peanut > butter, butter and egg) for a snack and buy some that > look almost exactly like them for her to bring on her > snack day. . . you'll get great tips on this list. > Best of luck.--D > > > *** > Also, what > > do you do about your other children? I just can't > picture lin accepting the fact that his 2 > year old sister can have cookies and he can't. I > > figure cookies and sweets will just have to be off > limit for her also. She loves fruit so that will > > be a good substitute. > > ===== > DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ > > " I know God would never give me more than I can handle. . .I just wish he didn't trust me so much. " > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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