Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Pam -- How is she doing seizure-wise? If her ketones are still strong and her seizures are roughly unchanged from prior to your drop, you could drop another .2 on the ratio. Could be that as you're weaning the meds, she's needing a lower ratio for the same level of control. I think that's what I would do. Good luck!--D __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Maybe take the same step down....to 3.6:1? It sounds like you need to do something, and that would probably be reasonable. Barb Swoyer, Jake's mom advice please is returning to the state she was in just 2 weeks ago when she had to be hospitalized. She is in too high ketosis. She is always black on stick. She started vomitting again yesterday. We were able to bring the ketosis into 16 purple range only after giving her 45mls of applejuice 4 times between 1:00pm and 10:00pm. I personally think this is ridiculous. I took it upon myself to bring her ratio down from 4:1 to 3.8 : 1 a couple of weeks ago for this very reason. If I am having to give her applejuice so often to break her ketosis, couldn't she just be on a lower ratio. What do you think I should do? If you think I should drop the ratio, how much? She is down to 375 mg of Epival a day now. We are getting very close to being done with meds now. Pam "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 February 26, 2002 Report Share Posted February 26, 2002 She had 7 seizures in 2 days, 2 weeks ago when she was vomitting and way too far in ketosis. She was also severely dehydrated at the time. I chocked up those seizures as "breakthrough" from illness too. She had a nasty cough. Other than those her seizure control has been great. She goes 25 day stretches even while weaning meds. She has better control on the diet than she did fully loaded with drugs pre-diet. Pam Re: advice please Pam -- How is she doing seizure-wise? If her ketonesare still strong and her seizures are roughlyunchanged from prior to your drop, you could dropanother .2 on the ratio. Could be that as you'reweaning the meds, she's needing a lower ratio for thesame level of control. I think that's what I woulddo. Good luck!--D__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Go to 3:1 to get any real change at all. You might even have to go lower. After 1 day at 3:1, then consider going lower still. What about the fats you are on. Could these be a factor? At 3:1 you can always go back up to 3.5:1 if necessary. > Pam wrote: > > is returning to the state she was in just 2 weeks ago when she > had to be hospitalized. She is in too high ketosis. She is always > black on stick. She started vomitting again yesterday. We were able > to bring the ketosis into 16 purple range only after giving her 45mls > of applejuice 4 times between 1:00pm and 10:00pm. > > I personally think this is ridiculous. I took it upon myself to > bring her ratio down from 4:1 to 3.8 : 1 a couple of weeks ago for > this very reason. If I am having to give her applejuice so often to > break her ketosis, couldn't she just be on a lower ratio. > > What do you think I should do? If you think I should drop the ratio, > how much? > > She is down to 375 mg of Epival a day now. We are getting very close > to being done with meds now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 I know that MCT oil can give higher ketones than other oils. Not sure about the others, but it seems possible. Since you are using a mixture perhaps that isn't something to be overly concerned about. You might see a pattern after a particular meal plan. You are using a mixture of fat sources. Looks like a much better choice than my daughter is getting. 8-) Do you make up your own meal plans? Perhaps there is an error is one or more calculations? You might post one (some?) here for review. Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 She gets her fat in through Hellman's Mayo (most often mixed with chicken), canola oil (mixed in her 35% whipping cream). We also use BECEL margarine to fry her eggs in. Those are her sources of fat. How does the source of fat change things? Guess I'm down to fine tuning now. Pam Re: advice please Go to 3:1 to get any real change at all. You might even have to golower. After 1 day at 3:1, then consider going lower still. What aboutthe fats you are on. Could these be a factor?At 3:1 you can always go back up to 3.5:1 if necessary.> Pam wrote:> > is returning to the state she was in just 2 weeks ago when she> had to be hospitalized. She is in too high ketosis. She is always> black on stick. She started vomitting again yesterday. We were able> to bring the ketosis into 16 purple range only after giving her 45mls> of applejuice 4 times between 1:00pm and 10:00pm.> > I personally think this is ridiculous. I took it upon myself to> bring her ratio down from 4:1 to 3.8 : 1 a couple of weeks ago for> this very reason. If I am having to give her applejuice so often to> break her ketosis, couldn't she just be on a lower ratio.> > What do you think I should do? If you think I should drop the ratio,> how much?> > She is down to 375 mg of Epival a day now. We are getting very close> to being done with meds now.> "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 February 26, 2002 Report Share Posted February 26, 2002 I'd definitely drop then. I'm just going by my experience with a very sensitive kid, but I'd only drop .2 at a time. I notice a difference even with that small a drop.--D __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Yes, I think you should lower the ratio... but I personally would go .2 at a time.... not jump straight to 3:1. You may end up there but I believe in taking it slow, especially if you have other things going on (med weaning). My advice would be to go down to 3.6:1.... hang out there for a few days and watch her... you know what signs she shows you when she is too ketotic and obviously, she could potentially have some more seizures if she gets that way again. Then you could go down another .2 until she is comfortable but still in ketosis. You'll need a day or so to see the change and stabilize. Each kid is different.... the goal is seizure control, (not 160+ black ketones!).... and if she can do that at a lower ratio, then great. If your doctor, or keto team is telling you you absolutely must stay at 4:1, then I am betting they have a fairly high failure rate on this diet. Vomiting, dehydration and ultra-black ketones are NOT desireable! You must customize the diet to the child. Katera stays above 80 ketones... sometimes as high as 160... even at a 2.3:1 ratio. Hang in there, Pam.... your instincts are good! Patti advice please is returning to the state she was in just 2 weeks ago when she had to be hospitalized. She is in too high ketosis. She is always black on stick. She started vomitting again yesterday. We were able to bring the ketosis into 16 purple range only after giving her 45mls of applejuice 4 times between 1:00pm and 10:00pm. I personally think this is ridiculous. I took it upon myself to bring her ratio down from 4:1 to 3.8 : 1 a couple of weeks ago for this very reason. If I am having to give her applejuice so often to break her ketosis, couldn't she just be on a lower ratio. What do you think I should do? If you think I should drop the ratio, how much? She is down to 375 mg of Epival a day now. We are getting very close to being done with meds now. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 We went thru the same thing a while ago......too ketotic/acidotic and giving juice frequently to bring it down. I changed the ratio for a more permanent fix, and certainly was the right thing to do. Problem solved. I dropped from 4:1 to 3.5:1, but in retrospect I think I should have gone down by less than that, perhaps to 3.7:1. Anyway, you are on the right track Pam, and perhaps another drop is in order, say......3.6? Best wishes (Hannah's mum Australia) advice please is returning to the state she was in just 2 weeks ago when she had to be hospitalized. She is in too high ketosis. She is always black on stick. She started vomitting again yesterday. We were able to bring the ketosis into 16 purple range only after giving her 45mls of applejuice 4 times between 1:00pm and 10:00pm. I personally think this is ridiculous. I took it upon myself to bring her ratio down from 4:1 to 3.8 : 1 a couple of weeks ago for this very reason. If I am having to give her applejuice so often to break her ketosis, couldn't she just be on a lower ratio. What do you think I should do? If you think I should drop the ratio, how much? She is down to 375 mg of Epival a day now. We are getting very close to being done with meds now. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Pam, My experience has been this.......when weaning Epilim, every time we did a drop of the med, a couple of days later Leah would become too ketotic just as you described. I would then drop the ratio by .1 and it would be smooth sailing again until the next drop in meds. In retrospect, i would now probably make changes in .2 increments. WE weaned Leah in tandem with the Lamictal over the course of 1 year( we chose to go very slowly coz Leah had been on Epilim for 6 years) Over that i year we got down to a ratio of 2.8:1..........since being free of meds we have gradually climbed back up the ratio to stay in good ketosis.(now at 3.4:1) Hope this is not too much info! Jeanette, Mum to Leah 10 yrs, sz free, med free > >Reply-To: ketogenic >To: <ketogenic > >Subject: advice please >Date: Tue, 26 Feb 2002 14:30:44 -0500 > > is returning to the state she was in just 2 weeks ago when she had to >be hospitalized. She is in too high ketosis. She is always black on >stick. She started vomitting again yesterday. We were able to bring the >ketosis into 16 purple range only after giving her 45mls of applejuice 4 >times between 1:00pm and 10:00pm. > >I personally think this is ridiculous. I took it upon myself to bring her >ratio down from 4:1 to 3.8 : 1 a couple of weeks ago for this very reason. > If I am having to give her applejuice so often to break her ketosis, >couldn't she just be on a lower ratio. > >What do you think I should do? If you think I should drop the ratio, how >much? > >She is down to 375 mg of Epival a day now. We are getting very close to >being done with meds now. > >Pam _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Could it be something in the mayo? Didnt someone mention something being in the mayo that caused problems for their child. I know I am probably shooting at air here but just thinking out loud. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 There's a couple things with mayo -- I was using the label values for the Spectrum Canola Mayo (as my dietician had told me to do) until I saw Barb post the exact values per 100g. It made a huge difference -- when I recalculated her meals, they ranged from 2.8 to 3.4 (she was on a 3.8 ratio at the time!). The other thing is that some kids are sensitive to soy and that's the base of most standard grocery store mayos (Hellmans, etc.). is sensitive to soy. I didn't see it affect seizures, but she'd have dark circles under her eyes and very red cheeks.--D --- heppner1@... wrote: > Could it be something in the mayo? __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Are dark circles under eyes and very red cheeks signs of allergy? What about puffy under eyes without tearing, or sneezing or any other signs? Jenn DeEtte Person wrote: is sensitive to soy. I didn't see it affect seizures, but she'd have dark circles under her eyes and very red cheeks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Yep. . .signs of an allergy or sensitivity. I think puffy eyes are, also.--D --- heppner1@... wrote: > Are dark circles under eyes and very red cheeks > signs of allergy? What > about puffy under eyes without tearing, or sneezing > or any other signs? > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Sunken eyes are a sign of dehydration. It would also have dry mouth, and lethargy. In addition, in serious dehydration, the skin doesn't return to its original position when pinched. Red cheeks are common with high ketones. Bill heppner1@... wrote: > > Are dark circles under eyes and very red cheeks signs of allergy? What > about puffy under eyes without tearing, or sneezing or any other > signs? > > Jenn > > DeEtte Person wrote: > > > is sensitive to soy. I didn't > > see it affect seizures, but she'd have dark circles > > under her eyes and very red cheeks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Altho Mike doesnt drink as much as he should be drinking we do test for dehydration and so far so good (at least according to the sticks) He does have dark circles under his eyes sometimes (now I will pay really close attention to what he is eating when they appear as well as red cheeks (usually after supper) Thanks for the info - now I have one more thing to watch for Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 I found that those sticks didn't give very meaningful results on the diet. Compared with symptoms of dry mouth, etc., they seemed to give opposite indications. I stopped using them to measure for dehydration and go by symptoms now. Bill heppner1@... wrote: > > Altho Mike doesnt drink as much as he should be drinking we do test for > dehydration and so far so good (at least according to the sticks) He > does have dark circles under his eyes sometimes (now I will pay really > close attention to what he is eating when they appear as well as red > cheeks (usually after supper) Thanks for the info - now I have one more > thing to watch for > > Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 We have been lucky that Mike doesnt have any signs of dehydration (altho he isnt drinking enough) and I would have to agree about the sticks - we do use them when we can (we dont purchase them as they are too expensive but we do get some from the hospital from time to time) He is registering at the top of the scale for hydration yet he isnt drinking alot of fluids. I guess it is still better to go with the signs and he isnt exhibiting any signs either so I guess things are ok. We are working on a way to try to get more fluids into him so when we start the phyllium powder we dont run into trouble. Jenn The Barbers wrote: I found that those sticks didn't give very meaningful results on the diet. Compared with symptoms of dry mouth, etc., they seemed to give opposite indications. I stopped using them to measure for dehydration and go by symptoms now. Bill Quote Link to comment Share on other sites More sharing options...
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