Re: Started the diet 12 days ago and have questions

March 11, 2002

I don't know about some of your drugs, but I do know that we had to drop

Lamictal due to toxicity. Jackie is brighter on the diet, and on fewer drugs

than before she started it. Seizure control is sometimes a matter of

" tweaking " . Which means you need to adjust the diet to your own kids

metabolism and illness. Jackie does better with a moderate to high ketones,

and if her ketones are too high she starts to seize. The whole thing is

confusing, since its based on each kid, but the diet has helped us immensly.

I do know from reading that some of the night seizures are due to a drop of

either meds or ketosis. I'm not sure which. Anyway, good luck. We keep

watching for Jackie to improve, and sometimes wonder if it is " all in our

head. " You are the one though who best knows your kid, and sometimes slight

improvements are major milestones to you.

mother of Jackie

age six

keto since 12/10/01

March 11, 2002

Hi Pam,

I think it sounds like the diet holds a LOT of promise for Kim! She's only been on it for a short time and those first weeks are often rough ones but you should see things stabilize over time. At first, the body fights being in ketosis so that should get easier. You do have a number of other things going on, though....med weaning and constipation..... which makes it hard to know what's causing what. Med weans can be tricky things.... some kids will have withdrawal seizures (some docs don't acknowledge these even exist but we know better!) but again, that's something that will pass and stabilize in time. It's hard to know if the med drop was what caused her seizures but it doesn't necessarily mean that she needed that med... just that it kinda destabilizes everything when you start taking it away. Hopefully, she can ride it out if you just take it slow and it will be worth it in the long run! I definitely do NOT think that these seizures are an indication that the diet isn't working for her. It just sometimes take some time.... you may not see total seizure control from the diet until all the meds are gone. That has been the experience of a number of other Keto families. Then again, she may always need the Neurontin..... but you never know. Time will tell. Eventually, you might be able to kiss that one goodbye, too!

The constipation issue can be a real problem, and I know some parents report that their kids will seize more when they are really constipated and needing to go! It's important to find what works for Kim for that. Many parents here have found that increasing the amount of magesium supplements works wonders. I don't know if you're already using it but many families use a product from Whole Life called Cal/Mag/Zinc ...... others of us use other magnesium products. Many are advised to give Calcium and Magnesium in a 2:1 ratio (which is, I think, what the Cal/Mag/Zinc product has in it) but some parents feel their kids need more like equal amounts of Cal and Mag and that has really helped. Magnesium will just cause loose bowells if you are giving more than they need. Also, magnesium is known for calming the central nervous system and helping with sleep. There's no worry about carb content if you're using just a plain magnesium powder or capsuled supplement .... but there are different forms of mag and you may find that some work better than others, some are absorbed better than others. Many parents find that, when necessary, good of Milk of Magnesia does the trick.... the plain, unflavored original one is Keto friendly. (MOM is just magnesium in a liquid suspension.) Another thing that may help is using some healthy oils for some of her fat sources instead of just the cream. You may already be doing that but I thought I'd mention it. Flax oil is one that a lot of us try to incorporate a little of into the diet..... it's a very healthy oil for the brain and helps raise and stabilize ketones, too. Suppositories and enemas are sometimes necessary but, of course, you can't use those on a daily basis... so hopefully some of these ideas will work for her.

My daughter (age 5 and on the diet 17 months) always has ketones of around 160... in fact, our problem has been more one of keeping her from getting too ketotic. Over time, we have had to keep lowering her ratio... now almost down to 2:1. Each kids is different.... hang in there and keep asking questions.... you'll get a lot of ideas and support here.

Patti, mom to Katera, Keto since 10-10-2000.... med-free, seizure-free for the most part (has had a total of five seizures, only with fever, since starting the diet.... last one was December 3rd).

Started the diet 12 days ago and have questions

Hi Everyone,

We have been on the diet about 12 days. My daughter Kim who is 9 has very hard to control seizures from viral encephalitis she had 3 years ago. We live in the suburbs of Philadelphia, Pa. I am so glad I have found this group, Rona, Wyatt's Mom that I know from another group told me about this group.

Ok I have some questions and I hope some of you can help me.

My instincts tell me the diet is working for us but maybe I just want it to work so bad that I have lost my objectivity.

Kim use to have cluster seizures we would go sometimes a week or two without seizures and then have a cluster of 7 or 8 seizures in a few days. A few months ago our doctor weaned the phenobarb and things got worse and the month before the diet we had 18 seizures.

We had one seizure 9 days ago but the ketones had dropped to moderate.

We are having a hard time keeping the ketones high large(160). Kim takes Neurontin, keppra and Felbatol(being weaned). Neutontin has alot of carb's in it but she really needs it it works for her so we switched to tablet form and we take it with the meal, nutritionist said it would be good for neurontin to be digested with the fat because of the carb content.

When the ketones dropped last week, I had given her a "Colace tablet" for constipation and it has a small amount of sorbitol so we thought it could of been that.

This weekend she was the best I have seen her in a long, long time, maybe the best i have seen her since her illness. Out riding her bike!! We reduced the Felbatol slightly(200mg) on Sunday as directed by her neurologist but Felbatol has a long half life of somethiing like 24 to 36 hours.

Last night the ketones were "low large"(80) and this morning they were closer to moderate(40). She had 2 seizures during the night, the first in a week. I used a "Fleet glycerin Suppository" on her before bed. Could the drop in ketones been from the glycerin suppository? And it didn't work, no bowel movement, she hasn't had one in a week. The neurologist told me to use the suppository instead of the Colace because of the sorbitol in the Colace.

What range are most of your children's ketones at bed-time and in the morning?

Do you think the seizures were from the drop in the medication (Felbatol)?

My other question is the meds have only been dropped slightly and have been this low before but she seems much, much more alert to me and clearer in her thinking since the diet, has anyone else experienced this?

I was very, very depressed to see the seizures during the night, does this mean the diet is not working for us?

Thank-You all so much. This is all new to me and I would to have your input.

Fondly,

Pam and Kim

"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

March 11, 2002

Dear Pam (), Thank-You for the e-mail and for the GREAT advice you gave me. I hope 's seizures stop. Thank-You, Pam (Gilligan) Started the diet 12 days ago and have questions Hi Everyone, We have been on the diet about 12 days. My daughter Kim who is 9 has very hard to control seizures from viral encephalitis she had 3 years ago. We live in the suburbs of Philadelphia, Pa. I am so glad I have found this group, Rona, Wyatt's Mom that I know from another group told me about this group. Ok I have some questions and I hope some of you can help me. My instincts tell me the diet is working for us but maybe I just want it to work so bad that I have lost my objectivity. Kim use to have cluster seizures we would go sometimes a week or two without seizures and then have a cluster of 7 or 8 seizures in a few days. A few months ago our doctor weaned the phenobarb and things got worse and the month before the diet we had 18 seizures. We had one seizure 9 days ago but the ketones had dropped to moderate. We are having a hard time keeping the ketones high large(160). Kim takes Neurontin, keppra and Felbatol(being weaned). Neutontin has alot of carb's in it but she really needs it it works for her so we switched to tablet form and we take it with the meal, nutritionist said it would be good for neurontin to be digested with the fat because of the carb content. When the ketones dropped last week, I had given her a "Colace tablet" for constipation and it has a small amount of sorbitol so we thought it could of been that. This weekend she was the best I have seen her in a long, long time, maybe the best i have seen her since her illness. Out riding her bike!! We reduced the Felbatol slightly(200mg) on Sunday as directed by her neurologist but Felbatol has a long half life of somethiing like 24 to 36 hours. Last night the ketones were "low large"(80) and this morning they were closer to moderate(40). She had 2 seizures during the night, the first in a week. I used a "Fleet glycerin Suppository" on her before bed. Could the drop in ketones been from the glycerin suppository? And it didn't work, no bowel movement, she hasn't had one in a week. The neurologist told me to use the suppository instead of the Colace because of the sorbitol in the Colace. What range are most of your children's ketones at bed-time and in the morning? Do you think the seizures were from the drop in the medication (Felbatol)? My other question is the meds have only been dropped slightly and have been this low before but she seems much, much more alert to me and clearer in her thinking since the diet, has anyone else experienced this? I was very, very depressed to see the seizures during the night, does this mean the diet is not working for us? Thank-You all so much. This is all new to me and I would to have your input. Fondly, Pam and Kim "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

March 11, 2002

Dear Patti, Thank-You so much for the e-mail. I was so comforted to hear you say that you definitely don't think the seizures were an indication that the diet was not working for us. We ordered the vitamins from whole life but have been waiting for them to come in the mail. It was great of you to answere me. Thanks, Pam Started the diet 12 days ago and have questions Hi Everyone, We have been on the diet about 12 days. My daughter Kim who is 9 has very hard to control seizures from viral encephalitis she had 3 years ago. We live in the suburbs of Philadelphia, Pa. I am so glad I have found this group, Rona, Wyatt's Mom that I know from another group told me about this group. Ok I have some questions and I hope some of you can help me. My instincts tell me the diet is working for us but maybe I just want it to work so bad that I have lost my objectivity. Kim use to have cluster seizures we would go sometimes a week or two without seizures and then have a cluster of 7 or 8 seizures in a few days. A few months ago our doctor weaned the phenobarb and things got worse and the month before the diet we had 18 seizures. We had one seizure 9 days ago but the ketones had dropped to moderate. We are having a hard time keeping the ketones high large(160). Kim takes Neurontin, keppra and Felbatol(being weaned). Neutontin has alot of carb's in it but she really needs it it works for her so we switched to tablet form and we take it with the meal, nutritionist said it would be good for neurontin to be digested with the fat because of the carb content. When the ketones dropped last week, I had given her a "Colace tablet" for constipation and it has a small amount of sorbitol so we thought it could of been that. This weekend she was the best I have seen her in a long, long time, maybe the best i have seen her since her illness. Out riding her bike!! We reduced the Felbatol slightly(200mg) on Sunday as directed by her neurologist but Felbatol has a long half life of somethiing like 24 to 36 hours. Last night the ketones were "low large"(80) and this morning they were closer to moderate(40). She had 2 seizures during the night, the first in a week. I used a "Fleet glycerin Suppository" on her before bed. Could the drop in ketones been from the glycerin suppository? And it didn't work, no bowel movement, she hasn't had one in a week. The neurologist told me to use the suppository instead of the Colace because of the sorbitol in the Colace. What range are most of your children's ketones at bed-time and in the morning? Do you think the seizures were from the drop in the medication (Felbatol)? My other question is the meds have only been dropped slightly and have been this low before but she seems much, much more alert to me and clearer in her thinking since the diet, has anyone else experienced this? I was very, very depressed to see the seizures during the night, does this mean the diet is not working for us? Thank-You all so much. This is all new to me and I would to have your input. Fondly, Pam and Kim "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

March 11, 2002

Pam,

It is very easy to get discouraged when our children have seizures. For my daughter, , we had to space her meals out a bit further. Pre-diet, she was eating breakfast at 7:30am, lunch around 11:30am and supper at approx. 5:30pm. She was going 14 hours without food. Since starting on the diet, we have spread those meals out so that she isn't going quite so long at night without "fat" to burn. Her ketones have been fine in the morning since doing that and no more night seizures.

This diet is a roller coaster of emotions. There are highs when you break your last record of days without seizures....for us we hit 23 days. There are lows. I won't deny it to you. We are 6 months into the diet now and has had a very bad few days again. I have to sit back and look from a distance and remind myself what we had originally hoped for when we started the diet. Our mission....if you can call it that....was to acheive better seizure control with less medication so that our daughter could live a more "normal" (I hate that word) life. That has happenned. She is off of 150 mg Topamax and weaned down to 250mg of Epival from a starting point of 1275mg of Epival.

It can be hard though. My daughter is currently very upset with her seizures she has had since Friday...crying, moping, etc. She has lost some confidence again...the pull-up went on this morning. When she does that I know her self-esteem is shot again.

As far as constipation goes, a glycerin suppository will only help if the poop is right at the anus (so a nurse told me). Maybe try a tbsp of mineral oil. It is not absorbed so it does not need to be calculated into the diet.

Pam