Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Bill, We have actually been weaning from the diet since early July, when it became clear to our neuro that Langan's acidosis could not be controlled on keto. We have gone from 4:1 to 3:1 to 2:1. I think the neuro believes we are now ok to go off, on an 8 day schedule. This is apparently the method that they usually use to wean, and they seem comfortable doing it. We have diastat if we need it, and they are available if there is an emergency. Luckily, Langan has never had problems with status seizures and hs only once since being diagnosed had more than one seizure a day. I am prepared for some seizures- we usually saw a few with each reduction. I just hope it does not spiral out of control. We are on a small dose of trileptal and they have agreed to keep us on that dose until we see what happens. Keto worked for Langan to some extent, but with the severe acidosis we could not safely remain on it. Even at 2:1 her bicarbs are too low. As we have lowered the ratio, she has become increasingly stronger and more interactive. As thrilled as I was to be able to see her medicine free for 4 months, Langan's development basically stood still for the 9 months she was on keto. I know it was not the diet itself- it was her body's reaction to the diet (the acidosis) that was the problem. Despite everything, keto is one of the best things we have ever done for Langan, and if we could do it again without the danger of the acidosis, I would in a heartbeat. It has allowed us to discover this acidosis, which apparently is related to her as yet undiagnosed underlying problem, and it has allowed us to get her off of the meds at least for a while. I think every parent should look into keto early on if their child doesn't respond to the meds or if they are concerned about the med side effects. When we started keto, I was sure that it was our " last chance " to get some control. I now have a better outlook about it. I am so sad that it didn't work for Langan. But I am so proud of her and of us for giving it 100%. I am also so happy that we met the people in this wonderful support group, and I will be following these kids regularly and praying for them. Take care! > > Hello all. As most of you know, we have been s-l-o-w-l-y weaning > > Langan from keto because of her persistent acidosis issues. We were > > at a 3:1 ratio for quite a while and moved down to 2:1 last > > Saturday. When we lowered, our neuro agreed to let us stay at a very > > small dose of trileptal (75 mg 2X a day) to see what happened, > > instead of increasing with the diet change. We saw a seizure the > > first night and one 3 days later and then they started tapering off. > > Strangely, though, Langan had low ketones when we first dropped and > > then they jumped to large by the middle of the week. And, > > unfortunately, even at 2:1 her bicarbs were 16, which is just not an > > acceptable level given her history. Soooo the neuro and dietician > > have given us an 8 day weaning schedule. And I am TERRIFIED!!! What > > am I going to do without the scale???? If we saw seizures with each > > change when we were moving at a snail's pace, how bad is it going to > > be at this pace? I totally agree with the neuro that it needs to be > > done so we can see what is going on metabolically with Langan, but at > > the same time I am so scared. We're staying where we are medicine- > > wise to see what happens and hopefully we can weather the storm and > > stay at a low dose. PLEASE wish us luck. We'll keep everyone > > posted, and I'll still be around this wonderful keto family, but I am > > just sooo scared to take this step. > > > > Thanks! > > > > , mom to Langan, 2 yrs old and keto kid since 11/03; weaning > > from keto due to metabolic acidosis, scared to death!! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Bill, I wish! But even at 2:1 she remains acidotic and continues to have large ketones. Getting her into ketosis has never been the problem. In fact, she registered large ketones the weekend before the diet. At the time, the dietician blamed it on a slight cold Langan had. Now I wonder if it was not an indicator of something else. Hopefully, once we are off of keto, our wonderful neuro and nephrologist can figure it out! Take care! > > Hello all. As most of you know, we have been s-l-o-w-l-y weaning > > Langan from keto because of her persistent acidosis issues. We were > > at a 3:1 ratio for quite a while and moved down to 2:1 last > > Saturday. When we lowered, our neuro agreed to let us stay at a very > > small dose of trileptal (75 mg 2X a day) to see what happened, > > instead of increasing with the diet change. We saw a seizure the > > first night and one 3 days later and then they started tapering off. > > Strangely, though, Langan had low ketones when we first dropped and > > then they jumped to large by the middle of the week. And, > > unfortunately, even at 2:1 her bicarbs were 16, which is just not an > > acceptable level given her history. Soooo the neuro and dietician > > have given us an 8 day weaning schedule. And I am TERRIFIED!!! What > > am I going to do without the scale???? If we saw seizures with each > > change when we were moving at a snail's pace, how bad is it going to > > be at this pace? I totally agree with the neuro that it needs to be > > done so we can see what is going on metabolically with Langan, but at > > the same time I am so scared. We're staying where we are medicine- > > wise to see what happens and hopefully we can weather the storm and > > stay at a low dose. PLEASE wish us luck. We'll keep everyone > > posted, and I'll still be around this wonderful keto family, but I am > > just sooo scared to take this step. > > > > Thanks! > > > > , mom to Langan, 2 yrs old and keto kid since 11/03; weaning > > from keto due to metabolic acidosis, scared to death!! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 , It sounds like there is something going on that you should be able to figure out. Bill langansmom wrote: > Bill, > > I wish! But even at 2:1 she remains acidotic and continues to have > large ketones. Getting her into ketosis has never been the problem. > In fact, she registered large ketones the weekend before the diet. > At the time, the dietician blamed it on a slight cold Langan had. > Now I wonder if it was not an indicator of something else. > Hopefully, once we are off of keto, our wonderful neuro and > nephrologist can figure it out! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Wnedy, We found the same thing. The diet wasn't a " cure " . But it allowed for much more alertness and getting off the medications and their side effects. You shouldn't be sad. Less than 5% of children are 100 percent cured by the diet. But many are vastly improved and as in your case, they " come back " . When you find out about the acidosis and get that conquered, maybe a keto or similar diet will be beneficial. Bill langansmom wrote: > Bill, > > We have actually been weaning from the diet since early July, when it > became clear to our neuro that Langan's acidosis could not be > controlled on keto. We have gone from 4:1 to 3:1 to 2:1. I think > the neuro believes we are now ok to go off, on an 8 day schedule. > This is apparently the method that they usually use to wean, and they > seem comfortable doing it. We have diastat if we need it, and they > are available if there is an emergency. Luckily, Langan has never > had problems with status seizures and hs only once since being > diagnosed had more than one seizure a day. I am prepared for some > seizures- we usually saw a few with each reduction. I just hope it > does not spiral out of control. We are on a small dose of trileptal > and they have agreed to keep us on that dose until we see what > happens. > > Keto worked for Langan to some extent, but with the severe acidosis > we could not safely remain on it. Even at 2:1 her bicarbs are too > low. As we have lowered the ratio, she has become increasingly > stronger and more interactive. As thrilled as I was to be able to > see her medicine free for 4 months, Langan's development basically > stood still for the 9 months she was on keto. I know it was not the > diet itself- it was her body's reaction to the diet (the acidosis) > that was the problem. Despite everything, keto is one of the best > things we have ever done for Langan, and if we could do it again > without the danger of the acidosis, I would in a heartbeat. It has > allowed us to discover this acidosis, which apparently is related to > her as yet undiagnosed underlying problem, and it has allowed us to > get her off of the meds at least for a while. I think every parent > should look into keto early on if their child doesn't respond to the > meds or if they are concerned about the med side effects. > > When we started keto, I was sure that it was our " last chance " to get > some control. I now have a better outlook about it. I am so sad > that it didn't work for Langan. But I am so proud of her and of us > for giving it 100%. I am also so happy that we met the people in > this wonderful support group, and I will be following these kids > regularly and praying for them. > > Take care! > > > > >> >>>Hello all. As most of you know, we have been s-l-o-w-l-y weaning >>>Langan from keto because of her persistent acidosis issues. We >> > were > >>>at a 3:1 ratio for quite a while and moved down to 2:1 last >>>Saturday. When we lowered, our neuro agreed to let us stay at a >> > very > >>>small dose of trileptal (75 mg 2X a day) to see what happened, >>>instead of increasing with the diet change. We saw a seizure the >>>first night and one 3 days later and then they started tapering >> > off. > >>>Strangely, though, Langan had low ketones when we first dropped >> > and > >>>then they jumped to large by the middle of the week. And, >>>unfortunately, even at 2:1 her bicarbs were 16, which is just not >> > an > >>>acceptable level given her history. Soooo the neuro and >> > dietician > >>>have given us an 8 day weaning schedule. And I am TERRIFIED!!! >> > What > >>>am I going to do without the scale???? If we saw seizures with >> > each > >>>change when we were moving at a snail's pace, how bad is it going >> > to > >>>be at this pace? I totally agree with the neuro that it needs to >> > be > >>>done so we can see what is going on metabolically with Langan, >> > but at > >>>the same time I am so scared. We're staying where we are >> > medicine- > >>>wise to see what happens and hopefully we can weather the storm >> > and > >>>stay at a low dose. PLEASE wish us luck. We'll keep everyone >>>posted, and I'll still be around this wonderful keto family, but >> > I am > >>>just sooo scared to take this step. >>> >>>Thanks! >>> >>>, mom to Langan, 2 yrs old and keto kid since 11/03; weaning >>>from keto due to metabolic acidosis, scared to death!! >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Bill, I try to rehydrate aël as I can because they sait at hospital he's ok....he's not so bad even if he doesn't drink (he driks about one glass per day!!!). I would have to have his medical results to see about the acidosis...but for the moment I didn't manage to get it Carolyn Re: Wish Us Luck!!!/ It sounds like your child is extremely dehydrated. You should take him to the hospital or a clinic and get him properly hydrated. Don't forget that the keto diet results in an increase in acidity as the ketone bodies are acidic. Bill caronath wrote: > , > > Your story sounds our... > aël is on keto diet since the end of july 04 and he's on acidosis, We're now at 2.1 ratio too but he's still on acidosis, the problem is that I don't know what to do with this, neuro from hospital didn't say anything ....We are alone!!!! > I'm very scared too because Nath was a bit better but still have tonic clonic seizures but he's so miserable that it hurts me a lot to see him poor , tired, sick, white and his rings under his eyes!!! > I wish you good luck of course for the following and if you could tell me more about metabolic acidosis it'll be great...I give you my email caronath@... . > I give since yesterday Nath bicarbonate of sodium in powder but I don't even know how much to give him.... > > Lots of love > > Carolyn, aël's mum > > PS/ Saro gave me the idea to ask you,thanks to her! > " 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 3, 2004 Report Share Posted September 3, 2004 The guideline is to have a minimum of 1 cc per calorie on the diet. So, for 900 calories per day you need to give 900 cc per day. Anything less than that can cause many problems including kidney stones, constipation, etc. For some children a g-tube is used to give adequate fluids and food. Bill caronath wrote: > Bill, > > I try to rehydrate aël as I can because they sait at hospital he's ok....he's not so bad even if he doesn't drink (he driks about one glass per day!!!). > I would have to have his medical results to see about the acidosis...but for the moment I didn't manage to get it > > Carolyn > > Re: Wish Us Luck!!!/ > > > It sounds like your child is extremely dehydrated. You should take him > to the hospital or a clinic and get him properly hydrated. Don't forget > that the keto diet results in an increase in acidity as the ketone > bodies are acidic. > > Bill > > caronath wrote: > > , > > > Your story sounds our... > > aël is on keto diet since the end of july 04 and he's on acidosis, We're now at 2.1 ratio too but he's still on acidosis, the problem is that I don't know what to do with this, neuro from hospital didn't say anything .....We are alone!!!! > > I'm very scared too because Nath was a bit better but still have tonic clonic seizures but he's so miserable that it hurts me a lot to see him poor , tired, sick, white and his rings under his eyes!!! > > I wish you good luck of course for the following and if you could tell me more about metabolic acidosis it'll be great...I give you my email caronath@... . > > I give since yesterday Nath bicarbonate of sodium in powder but I don't even know how much to give him.... > > > Lots of love > > > Carolyn, aël's mum > > > PS/ Saro gave me the idea to ask you,thanks to her! > > " 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 3, 2004 Report Share Posted September 3, 2004 The guideline is to have a minimum of 1 cc per calorie on the diet. So, for 900 calories per day you need to give 900 cc per day. Anything less than that can cause many problems including kidney stones, constipation, etc. For some children a g-tube is used to give adequate fluids and food. Bill caronath wrote: > Bill, > > I try to rehydrate aël as I can because they sait at hospital he's ok....he's not so bad even if he doesn't drink (he driks about one glass per day!!!). > I would have to have his medical results to see about the acidosis...but for the moment I didn't manage to get it > > Carolyn > > Re: Wish Us Luck!!!/ > > > It sounds like your child is extremely dehydrated. You should take him > to the hospital or a clinic and get him properly hydrated. Don't forget > that the keto diet results in an increase in acidity as the ketone > bodies are acidic. > > Bill > > caronath wrote: > > , > > > Your story sounds our... > > aël is on keto diet since the end of july 04 and he's on acidosis, We're now at 2.1 ratio too but he's still on acidosis, the problem is that I don't know what to do with this, neuro from hospital didn't say anything .....We are alone!!!! > > I'm very scared too because Nath was a bit better but still have tonic clonic seizures but he's so miserable that it hurts me a lot to see him poor , tired, sick, white and his rings under his eyes!!! > > I wish you good luck of course for the following and if you could tell me more about metabolic acidosis it'll be great...I give you my email caronath@... . > > I give since yesterday Nath bicarbonate of sodium in powder but I don't even know how much to give him.... > > > Lots of love > > > Carolyn, aël's mum > > > PS/ Saro gave me the idea to ask you,thanks to her! > > " 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 3, 2004 Report Share Posted September 3, 2004 The guideline is to have a minimum of 1 cc per calorie on the diet. So, for 900 calories per day you need to give 900 cc per day. Anything less than that can cause many problems including kidney stones, constipation, etc. For some children a g-tube is used to give adequate fluids and food. Bill caronath wrote: > Bill, > > I try to rehydrate aël as I can because they sait at hospital he's ok....he's not so bad even if he doesn't drink (he driks about one glass per day!!!). > I would have to have his medical results to see about the acidosis...but for the moment I didn't manage to get it > > Carolyn > > Re: Wish Us Luck!!!/ > > > It sounds like your child is extremely dehydrated. You should take him > to the hospital or a clinic and get him properly hydrated. Don't forget > that the keto diet results in an increase in acidity as the ketone > bodies are acidic. > > Bill > > caronath wrote: > > , > > > Your story sounds our... > > aël is on keto diet since the end of july 04 and he's on acidosis, We're now at 2.1 ratio too but he's still on acidosis, the problem is that I don't know what to do with this, neuro from hospital didn't say anything .....We are alone!!!! > > I'm very scared too because Nath was a bit better but still have tonic clonic seizures but he's so miserable that it hurts me a lot to see him poor , tired, sick, white and his rings under his eyes!!! > > I wish you good luck of course for the following and if you could tell me more about metabolic acidosis it'll be great...I give you my email caronath@... . > > I give since yesterday Nath bicarbonate of sodium in powder but I don't even know how much to give him.... > > > Lots of love > > > Carolyn, aël's mum > > > PS/ Saro gave me the idea to ask you,thanks to her! > > " 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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