Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Thank you to Jill,,Barbara,, rose and Saro, It is very helpful to know someone care about you and you are not completely alone... aël began the keto diet in the end of june this year but it was french hospital manners and when I checked the ratio, they said it's a ratio 5.1 it was in fact 1,5.1!!!!!! Nath was still seizuring a lot about 20 t c sz a night! So I decided to buy Freeman's book and I did the real 4.1 ratio. a week later Nath was better,( doctors tried at the same time trileptal 225 mg a day), so I was very enthousiast! But 3 weeks later he became in acidosis , vomiting all day and night long, so I went back to hospital, they didn't know what to do ....I decided to decrease the ratio, first to 3.1 then 2.5.1 then 2.1 because still bad... And unfortunately sz came back irregularely but back and he started again to have status seizures.... Nath is 6 years old, 122 cm height, 19 kg, He's now since yesterday to ratio 2.5.1, 1224 cal/day. I give him some basics salts I think he's better with. I try to give him less cream because that makes him sick, so I prefer butter or good oils. What is VNS? Thanks for beeing there and for yours prayers... Carolyn and his little angel aël Carolyn/ ael > > > Hi Carolyn, > > How is Nath (do you mind, if I call him that as I'm not very good > at typing?) doing? > I've been thinking of you guys and wondering whether you got any > more help with the acidosis and continuing on the diet. > I do hope you got some help from the hospital and dr.s and things > are better. > > Saro > > > > > " 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 September 12, 2004 Report Share Posted September 12, 2004 Carolyn 1.5:1 was too low (no suprise there) and 4:1was too high. So you did 2:1and now moved up to 2.5:1. I think you might be on the right track. Maybe its just a matter of finding the right ratio for him. I would leave him at 2.5:1 for at least two weeks if you can. If no change with seizures, or better but still not good enough, then move to 3:1. And reassess again in a few weeks. One more thing, whats his weight and height been doing since you started diet? I think I would check weight and height on good accurate scales (always use same scales once you start) and plot him on a growth chart. Just to make sure calories are neither too high nor too low. You don't really want to see him gaining weight without the height to go with it. Kids tend to do better on diet at around the 25th percentile for weight on the growth charts but at any rate, you wouldn't want him above the 50th percentile. Hope thats helpful caronath wrote: > Thank you to Jill,,Barbara,, rose and Saro, > > It is very helpful to know someone care about you and you are not > completely alone... > > aël began the keto diet in the end of june this year but it was > french hospital manners and when I checked the ratio, they said it's a > ratio 5.1 it was in fact 1,5.1!!!!!! Nath was still seizuring a lot > about 20 t c sz a night! > > So I decided to buy Freeman's book and I did the real 4.1 ratio. a > week later Nath was better,( doctors tried at the same time trileptal > 225 mg a day), so I was very enthousiast! > > But 3 weeks later he became in acidosis , vomiting all day and night > long, so I went back to hospital, they didn't know what to do ....I > decided to decrease the ratio, first to 3.1 then 2.5.1 then 2.1 > because still bad... > And unfortunately sz came back irregularely but back and he started > again to have status seizures.... > > Nath is 6 years old, 122 cm height, 19 kg, > He's now since yesterday to ratio 2.5.1, 1224 cal/day. > I give him some basics salts I think he's better with. > > I try to give him less cream because that makes him sick, so I prefer > butter or good oils. > What is VNS? > Thanks for beeing there and for yours prayers... > > Carolyn and his little angel aël > > > > > > > > Carolyn/ ael > > > > > > Hi Carolyn, > > > > How is Nath (do you mind, if I call him that as I'm not very good > > > at typing?) doing? > > I've been thinking of you guys and wondering whether you got any > > more help with the acidosis and continuing on the diet. > > I do hope you got some help from the hospital and dr.s and things > > > are better. > > > > Saro > > > > > > > > > > " 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 September 12, 2004 Report Share Posted September 12, 2004 mmc@... wrote: > One more thing, whats his weight and height been doing since you > started > diet? I think I would check weight and height on good accurate scales > (always use same scales once you start) and plot him on a growth > chart. Sorry, meant to say check his height and weight once a week Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 It sounds like you are getting on top of the diet. It is mostly trial and error as you have discovered. We went through exactly the same problems; vomiting every meal, terrible reflux, agonizing constipation, everyone you know asking why you are abusing your child, etc. It took a long time and eventually, things settled down. Seizures never went away completely, but were much reduced and very short with an immediate recovery. Things that you have to watch out for include constipation, reflux, drug toxicity, inadequate vitamin and mineral supplements. Once you get things under control and he is finishing meals without vomiting, you can start to do some fine tuning and get better control. I can't imagine starting the diet without reading Dr. Freeman's book. That would seem to be an impossible task. Combine that with an inexperienced keto team and it is no wonder that you had such problems. Good luck, Bill caronath wrote: > Thank you to Jill,,Barbara,, rose and Saro, > > It is very helpful to know someone care about you and you are not completely alone... > > aël began the keto diet in the end of june this year but it was french hospital manners and when I checked the ratio, they said it's a ratio 5.1 it was in fact 1,5.1!!!!!! Nath was still seizuring a lot about 20 t c sz a night! > > So I decided to buy Freeman's book and I did the real 4.1 ratio. a week later Nath was better,( doctors tried at the same time trileptal 225 mg a day), so I was very enthousiast! > > But 3 weeks later he became in acidosis , vomiting all day and night long, so I went back to hospital, they didn't know what to do ....I decided to decrease the ratio, first to 3.1 then 2.5.1 then 2.1 because still bad... > And unfortunately sz came back irregularely but back and he started again to have status seizures.... > > Nath is 6 years old, 122 cm height, 19 kg, > He's now since yesterday to ratio 2.5.1, 1224 cal/day. > I give him some basics salts I think he's better with. > > I try to give him less cream because that makes him sick, so I prefer butter or good oils. > What is VNS? > Thanks for beeing there and for yours prayers... > > Carolyn and his little angel aël Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Dear Carolyn, I've been reading your posts since you joined (even though I rarely post myself) and it just about breaks my heart every time. One can tell that you are having such a tough time, and it is especially frustrating to know that you don't have competant medical support. I can't really help with suggestions, as so many of the parents here can. My daughter and I are new to the diet, having started in March. She is doing pretty well, but still has seizures, and has had a rough patch lately, but nothing like what you deal with on a daily basis. If this is any help to you, I'll tell you about Lily. She had bacterial meningitis as an infant and it left her with multiple issues, but the seizures didn't start until 18 months. They were so subtle at first I didn't recognize them. They increased in frequency and we started on meds. After 120 mg of Topamax and .75 mg of Klonapin didn't really help, our neuro suggested the diet. Lily has been fairly successful (her meds are way down, she's less sleepy, recovers better from the seizures, etc.) on the diet at 3.75:1 Recently, I have thought that her ketones might be a little too high, so I lowered the ratio at little to 3.5:1. I think you have to give the new ratio at least 2 weeks trial before trying something else. I just use the ketostix, not the monitor that some others her use. I'd love to have one, but don't know how to go about it. That's one of the hardest things about the diet. I feel that I don't really know what I'm doing, like Lily is some sort of lab experiment. Trial and error, see what works. It's hard to be patient when she's having a seizure. I think that if I understood the diet better, I could prevent the seizures, but that's not reasonable, I know. I still think it, though. I'm still waiting to see if the lowered ratio will work. She had one today, but very mild. It didn't even make her sleepy. That's an improvement from Saturday's really strong one, but that was better than last Thursday's strongest one in a long time. Is it getting better? Wait and see. After that long message, if you are still reading this, know that you are not alone, we are all with you. I'll try to be more vocal with my support. I wish I could hand you the magic wand, or magic advice, but my knowledge on this subject is minimal. I'm stumbling around myself, hoping to stumble across the right combination that works for Lily. I hope we both find it. Only one thing is certain: we'll only fail if we stop trying to find the answer, whether or not it's the diet or some other treatment. That reminds me - VNS is a Vagus Nerve Stimulator, sort of a pacemaker for the brain. It stimulates the Vagus Nerve (hence the name ) in and effort to prevent seizures. It's a medical device implanted in the chest. I'm sure you can find much better info online. > > >Saro, > > > >Thanks to worry about us because I haven't the feeling a lot of persons do...I sent a mail to tell my suffering with aël a few days later and noone respond me...I know I'm the only french one on this group maybe it is more difficult for you to come to me, I feel very lonely... > > > >We came back from hospital an other time, I'm so sad to see my little angel with so many seizures all the time. Sometimes it is a bit better but not really. > >He had a status seizure and doctors put him on gardenal , usually it makes him better at least 48 hours and this time 10 hours later he seizured again...They did him diazepam intra rectal, he seizured again, so they stopped and as he was a bit better they said I can go back home....So we're back home. > > He's a bit better now, I try to increase the ratio up to 2,5.1 instead of 2.1, I hope he won't go to acidosis again...Doctors said his acidosis is better now... > >I don't have any numbers about his acidosis... > >I continue the keto diet but still very difficult alone... > > > >Carolyn, aël's mum 6,unknown disease. > > Carolyn/ ael > > > > > > Hi Carolyn, > > > > How is Nath (do you mind, if I call him that as I'm not very good > > at typing?) doing? > > I've been thinking of you guys and wondering whether you got any > > more help with the acidosis and continuing on the diet. > > I do hope you got some help from the hospital and dr.s and things > > are better. > > > > Saro > > > > > > > > > > " 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 September 14, 2004 Report Share Posted September 14, 2004 and all the others, aël is very bad, a lot of t c sz all night long and still now awake.I won't spend our life at hospital, and it doesn't change anything....He 's had 2 clonazepam intra rectal but not better...Could you tell me about ativan? We 've got this under an other name but they don't use it for sz!Which dose do you give? I increased the ratio to 2.5.1 and Nath is not very well, he's again white and nearly vomits...I'm completely desesperated! I think Nath didn't lose or gain weight, I guess he's stable. about height I don't know, it is very difficult to height him... I try to take off cream, that makes him sick I think. Thanks Carolyn, aël's mum Carolyn/ ael > > > > > > Hi Carolyn, > > > > How is Nath (do you mind, if I call him that as I'm not very good > > > at typing?) doing? > > I've been thinking of you guys and wondering whether you got any > > more help with the acidosis and continuing on the diet. > > I do hope you got some help from the hospital and dr.s and things > > > are better. > > > > Saro > > > > > > > > > > " 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 September 14, 2004 Report Share Posted September 14, 2004 Carolyn, You have to take accurate weight, at the doctor's with an accurate scale every week and keep records. That is essential. What meals are you using? The cream can be diluted to make it more like milk for texture. What are the ketone levels you are measuring? Are you treating him for reflux? Bill caronath wrote: > and all the others, > > aël is very bad, a lot of t c sz all night long and still now awake.I won't spend our life at hospital, and it doesn't change anything....He 's had 2 clonazepam intra rectal but not better...Could you tell me about ativan? We 've got this under an other name but they don't use it for sz!Which dose do you give? > > I increased the ratio to 2.5.1 and Nath is not very well, he's again white and nearly vomits...I'm completely desesperated! > I think Nath didn't lose or gain weight, I guess he's stable. about height I don't know, it is very difficult to height him... > I try to take off cream, that makes him sick I think. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 Bill, aël is 19 kg weight, moe or less 0.5 kg... Doctors don't weight him...They don't care about that! I'll do it every week to see if it changes or not. I give him simple meals now like meat, veggies, olive oil an a bit of cream. The most difficult is for breakfast because if I give him cream and yougourt and butter, he's sick....And I was wondering, as he's on acidosis, should I take away acid food as tomatoe.....? I don't treat him for reflux, when he was little, he was always under reflux treatment but he was really better these years. I don't measure blood ketones anymore because they are very very low!!!!I measure urinary ketones and he's still got 3 xxx. Carolyn Re: Carolyn/ ael news Carolyn, You have to take accurate weight, at the doctor's with an accurate scale every week and keep records. That is essential. What meals are you using? The cream can be diluted to make it more like milk for texture. What are the ketone levels you are measuring? Are you treating him for reflux? Bill caronath wrote: > and all the others, > > aël is very bad, a lot of t c sz all night long and still now awake.I won't spend our life at hospital, and it doesn't change anything....He 's had 2 clonazepam intra rectal but not better...Could you tell me about ativan? We 've got this under an other name but they don't use it for sz!Which dose do you give? > > I increased the ratio to 2.5.1 and Nath is not very well, he's again white and nearly vomits...I'm completely desesperated! > I think Nath didn't lose or gain weight, I guess he's stable. about height I don't know, it is very difficult to height him... > I try to take off cream, that makes him sick I think. " 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 September 14, 2004 Report Share Posted September 14, 2004 Carolyn, You may have answered these questions before so I apologize if I am repeating them. I have to delete most of my mail as I get overwhelmed otherwise. Do your doctors have a copy of Dr. Freeman's book? How are they helping you with the diet. They should at least know to weigh your son very accurately once a week as that is very basic to the diet. Are you calculating the meals or is someone doing it for you? For us, we found olive oil and flax oil to be very hard to manage on the diet. We had better success with safflower oil or canola oil as being milder and easier to digest. Reflux is very common on the diet. If your son suffered from it earlier, he may very likely be subject to it again. I would certainly treat him for it now, but you can use other treatments other than medicines. For the acidosis, it is normal on the diet for the blood to be acidic because ketones are acidic. I suppose if you have higher ketones, you would also have greater acidity. I read once that sometimes the CO2 will drop below 10 in some cases and this is considered to be normal on the diet. The body seems to make adjustments to keep things going if not necessarily at the same range that would be considered normal if not on the diet. And I don't think that avoiding tomatoes would make any difference in that regard. The body adjusts for that too. It is more likely that the ratio, calories, ketone levels and fluid intake would have a far greater influence. When you say that urine ketones are 3xxx, does that mean very high? Does this happen right away or after 15 seconds or so? Can you post the numbers in grams that you are using for your meals and can you post the numbers for the individual meals that you are using? Thanks Bill caronath wrote: > Bill, > > aël is 19 kg weight, moe or less 0.5 kg... > Doctors don't weight him...They don't care about that! > I'll do it every week to see if it changes or not. > I give him simple meals now like meat, veggies, olive oil an a bit of cream. The most difficult is for breakfast because if I give him cream and yougourt and butter, he's sick....And I was wondering, as he's on acidosis, should I take away acid food as tomatoe.....? > I don't treat him for reflux, when he was little, he was always under reflux treatment but he was really better these years. > I don't measure blood ketones anymore because they are very very low!!!!I measure urinary ketones and he's still got 3 xxx. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Carolyn, I'm sorry to hear this. I think Ativan is called Lorazepam here in the UK. They only give it as an IV in hospital and not for home use. A couple of times Rohan has had Paraldehyde (something that has a strong smell) given (rectally ) in hospital too. However we've tried Midozolam (put between the cheek and gum ) at home which like diazepam, wasn't of much help. Do you think maybe you ought to explore other options if ael is seizing at 2.5 :1 and at the same time seems acidotic? If it's not acidity then maybe you could try avoiding lactose (milk , cream etc.) Rohan is not on the diet anymore and is on Keppra while we wait for the VNS. I don't know what long term side effects it can have and we've had our problems with it as with any AED but it seems a stopgap. Saro caronath wrote: > and all the others, > >aël is very bad, a lot of t c sz all night long and still now awake.I won't spend our life at hospital, and it doesn't change anything....He 's had 2 clonazepam intra rectal but not better...Could you tell me about ativan? We 've got this under an other name but they don't use it for sz!Which dose do you give? > >I increased the ratio to 2.5.1 and Nath is not very well, he's again white and nearly vomits...I'm completely desesperated! >I think Nath didn't lose or gain weight, I guess he's stable. about height I don't know, it is very difficult to height him... >I try to take off cream, that makes him sick I think. > >Thanks > >Carolyn, aël's mum > > Carolyn/ ael > > > > > > > > > Hi Carolyn, > > > > > > How is Nath (do you mind, if I call him that as I'm not very good > > > > > at typing?) doing? > > > I've been thinking of you guys and wondering whether you got any > > > more help with the acidosis and continuing on the diet. > > > I do hope you got some help from the hospital and dr.s and things > > > > > are better. > > > > > > Saro > > > > > > > > > > > > > > > " 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 September 15, 2004 Report Share Posted September 15, 2004 Hi Carolyn We use Ativan to stop seizures.We use rectal form but recently ph was prescribed oral form (a smal tablet we dissolve in water and give under the cheeck).You have to be really careful with Ativan as overdose( and even smal dose) can result in respiratory arest.The dose has to be prescribed by Nath's doctor Natasha mom to 2 years old ph, suspected SMEI/Dravet's syndrome,keto kid since August 23 2004 > > > > >Saro, > > > > > >Thanks to worry about us because I haven't the feeling a lot of > > persons do...I sent a mail to tell my suffering with aël a few > > days later and noone respond me...I know I'm the only french one on > > this group maybe it is more difficult for you to come to me, I feel > > very lonely... > > > > > >We came back from hospital an other time, I'm so sad to see my > > little angel with so many seizures all the time. Sometimes it is a bit > > better but not really. > > >He had a status seizure and doctors put him on gardenal , usually > > it makes him better at least 48 hours and this time 10 hours later he > > seizured again...They did him diazepam intra rectal, he seizured > > again, so they stopped and as he was a bit better they said I can go > > back home....So we're back home. > > > He's a bit better now, I try to increase the ratio up to 2,5.1 > > instead of 2.1, I hope he won't go to acidosis again...Doctors said > > his acidosis is better now... > > >I don't have any numbers about his acidosis... > > >I continue the keto diet but still very difficult alone... > > > > > >Carolyn, aël's mum 6,unknown disease. > > > Carolyn/ ael > > > > > > > > > Hi Carolyn, > > > > > > How is Nath (do you mind, if I call him that as I'm not very good > > > > > at typing?) doing? > > > I've been thinking of you guys and wondering whether you got any > > > more help with the acidosis and continuing on the diet. > > > I do hope you got some help from the hospital and dr.s and things > > > > > are better. > > > > > > Saro > > > > > > > > > > > > > > > " 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 September 15, 2004 Report Share Posted September 15, 2004 Bill, If you were here you'll never ask if doctors have a copy of Dr F book! When I showed this to the neuro in hospital he sait he wouldn't read it even if someone pay him!!!He didn't have a lot a it and sait he doesn't believe to the keto diet anyway....So it is normal if I can't get any help from them!!! I do calculate aël's meals of course... I don't know what's this oil, canola oil?So I don't know if I use this one... His urine ketones are not so good, it is 3 x but not immediately but after 1 mn and today it was only 2 x... aël takes 4 meals a day 1224 cal/day per meal : prot 6 g fat 27.8 g carb 7.9 g Thanks to tell me what to think about it... Carolyn Re: Carolyn/ ael news Carolyn, You may have answered these questions before so I apologize if I am repeating them. I have to delete most of my mail as I get overwhelmed otherwise. Do your doctors have a copy of Dr. Freeman's book? How are they helping you with the diet. They should at least know to weigh your son very accurately once a week as that is very basic to the diet. Are you calculating the meals or is someone doing it for you? For us, we found olive oil and flax oil to be very hard to manage on the diet. We had better success with safflower oil or canola oil as being milder and easier to digest. Reflux is very common on the diet. If your son suffered from it earlier, he may very likely be subject to it again. I would certainly treat him for it now, but you can use other treatments other than medicines. For the acidosis, it is normal on the diet for the blood to be acidic because ketones are acidic. I suppose if you have higher ketones, you would also have greater acidity. I read once that sometimes the CO2 will drop below 10 in some cases and this is considered to be normal on the diet. The body seems to make adjustments to keep things going if not necessarily at the same range that would be considered normal if not on the diet. And I don't think that avoiding tomatoes would make any difference in that regard. The body adjusts for that too. It is more likely that the ratio, calories, ketone levels and fluid intake would have a far greater influence. When you say that urine ketones are 3xxx, does that mean very high? Does this happen right away or after 15 seconds or so? Can you post the numbers in grams that you are using for your meals and can you post the numbers for the individual meals that you are using? Thanks Bill caronath wrote: > Bill, > > aël is 19 kg weight, moe or less 0.5 kg... > Doctors don't weight him...They don't care about that! > I'll do it every week to see if it changes or not. > I give him simple meals now like meat, veggies, olive oil an a bit of cream. The most difficult is for breakfast because if I give him cream and yougourt and butter, he's sick....And I was wondering, as he's on acidosis, should I take away acid food as tomatoe.....? > I don't treat him for reflux, when he was little, he was always under reflux treatment but he was really better these years. > I don't measure blood ketones anymore because they are very very low!!!!I measure urinary ketones and he's still got 3 xxx. > " 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 September 15, 2004 Report Share Posted September 15, 2004 I can understand now your frustration with the doctors! Canola oil used to be called rapeseed oil. On the urine ketones, it should indicate a time maybe 15 or 30 seconds or so as being when you are supposed to read the strips. You are seeing some ketones so that is good. Consistant would be better, but they do vary naturally during the day. It 3 x the highest level? Can you give me the details of sample meals; breakfast, lunch, dinner and supper with gm of each food you use? Are you using a computer progam to calculate the meals or are you doing them by hand? His calories seem okay, but you might experiment with dropping them to see if that helps with seizures and ketones. If you are getting accurate weight and height, that will help. How active is your son? The ratio - that is something else that you will have to look at, but it is now 2:1 and that is more like a weaning ratio. Usually it has to be 2.5:1 or higher. You might be getting reflux and constipation. They often are seen together and aggravate the situation. You might look at going to 3 meals a day plus 2 snacks a day. I know that it seems like all you do all day is make meals and feed them. You can just take one of your calculated meals and split it in half. If you can give milk of magnesium (original flavour), it will help with reflux and constipation and also with extra mineral. Also a bit of soda water at the end of the meal can also calm down the stomach. Then you should keep your son at 45 degree angle at the end of the meal and raise the head of his bed by about 4 to 6 inches. What sort of a vitamin and mineral supplement have you found? Is it keto friendly? Hope things are settling down, Bill caronath wrote: > Bill, > > If you were here you'll never ask if doctors have a copy of Dr F book! When I showed this to the neuro in hospital he sait he wouldn't read it even if someone pay him!!!He didn't have a lot a it and sait he doesn't believe to the keto diet anyway....So it is normal if I can't get any help from them!!! > > I do calculate aël's meals of course... > > I don't know what's this oil, canola oil?So I don't know if I use this one... > > His urine ketones are not so good, it is 3 x but not immediately but after 1 mn and today it was only 2 x... > > aël takes 4 meals a day > 1224 cal/day > per meal : prot 6 g > fat 27.8 g > carb 7.9 g > > Thanks to tell me what to think about it... > > Carolyn > > > > Re: Carolyn/ ael news > > > Carolyn, > > You may have answered these questions before so I apologize if I am > repeating them. I have to delete most of my mail as I get overwhelmed > otherwise. > > Do your doctors have a copy of Dr. Freeman's book? How are they helping > you with the diet. They should at least know to weigh your son very > accurately once a week as that is very basic to the diet. > > Are you calculating the meals or is someone doing it for you? > > For us, we found olive oil and flax oil to be very hard to manage on the > diet. We had better success with safflower oil or canola oil as being > milder and easier to digest. > > Reflux is very common on the diet. If your son suffered from it earlier, > he may very likely be subject to it again. I would certainly treat him > for it now, but you can use other treatments other than medicines. > > For the acidosis, it is normal on the diet for the blood to be acidic > because ketones are acidic. I suppose if you have higher ketones, you > would also have greater acidity. I read once that sometimes the CO2 will > drop below 10 in some cases and this is considered to be normal on the > diet. The body seems to make adjustments to keep things going if not > necessarily at the same range that would be considered normal if not on > the diet. And I don't think that avoiding tomatoes would make any > difference in that regard. The body adjusts for that too. It is more > likely that the ratio, calories, ketone levels and fluid intake would > have a far greater influence. > > When you say that urine ketones are 3xxx, does that mean very high? Does > this happen right away or after 15 seconds or so? > > Can you post the numbers in grams that you are using for your meals and > can you post the numbers for the individual meals that you are using? > > Thanks > Bill > > caronath wrote: > > Bill, > > > aël is 19 kg weight, moe or less 0.5 kg... > > Doctors don't weight him...They don't care about that! > > I'll do it every week to see if it changes or not. > > I give him simple meals now like meat, veggies, olive oil an a bit of cream. The most difficult is for breakfast because if I give him cream and yougourt and butter, he's sick....And I was wondering, as he's on acidosis, should I take away acid food as tomatoe.....? > > I don't treat him for reflux, when he was little, he was always under reflux treatment but he was really better these years. > > I don't measure blood ketones anymore because they are very very low!!!!I measure urinary ketones and he's still got 3 xxx. > > " 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 September 15, 2004 Report Share Posted September 15, 2004 Carolyn, Is he the only Nuero around there? I think we use Canola oil more in the U.S. than in Europe. Hallie Re: Carolyn/ ael news Carolyn, You may have answered these questions before so I apologize if I am repeating them. I have to delete most of my mail as I get overwhelmed otherwise. Do your doctors have a copy of Dr. Freeman's book? How are they helping you with the diet. They should at least know to weigh your son very accurately once a week as that is very basic to the diet. Are you calculating the meals or is someone doing it for you? For us, we found olive oil and flax oil to be very hard to manage on the diet. We had better success with safflower oil or canola oil as being milder and easier to digest. Reflux is very common on the diet. If your son suffered from it earlier, he may very likely be subject to it again. I would certainly treat him for it now, but you can use other treatments other than medicines. For the acidosis, it is normal on the diet for the blood to be acidic because ketones are acidic. I suppose if you have higher ketones, you would also have greater acidity. I read once that sometimes the CO2 will drop below 10 in some cases and this is considered to be normal on the diet. The body seems to make adjustments to keep things going if not necessarily at the same range that would be considered normal if not on the diet. And I don't think that avoiding tomatoes would make any difference in that regard. The body adjusts for that too. It is more likely that the ratio, calories, ketone levels and fluid intake would have a far greater influence. When you say that urine ketones are 3xxx, does that mean very high? Does this happen right away or after 15 seconds or so? Can you post the numbers in grams that you are using for your meals and can you post the numbers for the individual meals that you are using? Thanks Bill caronath wrote: > Bill, > > aël is 19 kg weight, moe or less 0.5 kg... > Doctors don't weight him...They don't care about that! > I'll do it every week to see if it changes or not. > I give him simple meals now like meat, veggies, olive oil an a bit of cream. The most difficult is for breakfast because if I give him cream and yougourt and butter, he's sick....And I was wondering, as he's on acidosis, should I take away acid food as tomatoe.....? > I don't treat him for reflux, when he was little, he was always under reflux treatment but he was really better these years. > I don't measure blood ketones anymore because they are very very low!!!!I measure urinary ketones and he's still got 3 xxx. > " 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 September 16, 2004 Report Share Posted September 16, 2004 Dear Carolyn, I have been reading your posts and wish that there was more that I could do to help you. You are showing tremendous courage and strength in the midst of all this ! Both ael and yourself are in my prayers. Just a few points - a. Is ael toxic on meds ? Can you check blood levels of these meds ? (This is the first thing that I would do) b. He sounds like he could be intolerant to too much dairy (cream) c. When I feed my son Keenan, I split his meal into a dry (meat and mushrooms with a tiny bit of butter and herbal salt) and wet portion (Cream (small amount) with Olive oil and vegetables - pureed to make a soup. I noticed that when I upped the cream - he stopped wanting it - he was craving the dry less fatty foods. He was too acidic and too ketotic when this happened ! d. What supplements are you giving him ?? Is he on an adult multivitamin - if so, is there anything that could have reached toxic levels ? eg. Vitamin A e.When ratios change - maybe they shift the levels of meds in the system ? I am wondering this myself lately ? We changed Keenan's ratio recently and he went as pale as anything for a few days - he also became extremely hyperactive. Just a few things to think about, Michele - mom to keenan Re: Carolyn/ ael news Carolyn, You may have answered these questions before so I apologize if I am repeating them. I have to delete most of my mail as I get overwhelmed otherwise. Do your doctors have a copy of Dr. Freeman's book? How are they helping you with the diet. They should at least know to weigh your son very accurately once a week as that is very basic to the diet. Are you calculating the meals or is someone doing it for you? For us, we found olive oil and flax oil to be very hard to manage on the diet. We had better success with safflower oil or canola oil as being milder and easier to digest. Reflux is very common on the diet. If your son suffered from it earlier, he may very likely be subject to it again. I would certainly treat him for it now, but you can use other treatments other than medicines. For the acidosis, it is normal on the diet for the blood to be acidic because ketones are acidic. I suppose if you have higher ketones, you would also have greater acidity. I read once that sometimes the CO2 will drop below 10 in some cases and this is considered to be normal on the diet. The body seems to make adjustments to keep things going if not necessarily at the same range that would be considered normal if not on the diet. And I don't think that avoiding tomatoes would make any difference in that regard. The body adjusts for that too. It is more likely that the ratio, calories, ketone levels and fluid intake would have a far greater influence. When you say that urine ketones are 3xxx, does that mean very high? Does this happen right away or after 15 seconds or so? Can you post the numbers in grams that you are using for your meals and can you post the numbers for the individual meals that you are using? Thanks Bill caronath wrote: > Bill, > > aël is 19 kg weight, moe or less 0.5 kg... > Doctors don't weight him...They don't care about that! > I'll do it every week to see if it changes or not. > I give him simple meals now like meat, veggies, olive oil an a bit of cream. The most difficult is for breakfast because if I give him cream and yougourt and butter, he's sick....And I was wondering, as he's on acidosis, should I take away acid food as tomatoe.....? > I don't treat him for reflux, when he was little, he was always under reflux treatment but he was really better these years. > I don't measure blood ketones anymore because they are very very low!!!!I measure urinary ketones and he's still got 3 xxx. > " 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...
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