Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 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 30, 2004 Report Share Posted August 30, 2004 , The very best of luck to you - I will have everything crossed for you. You have been through so much and so has Langan. You are an incredible lady and mum. Let us know how it goes. Take Care and all the best. Emma - UK mum to . x > 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 30, 2004 Report Share Posted August 30, 2004 Luck Much of it from this way - ----- Original Message ----- From: langansmom 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 luck luck luck! Ally Wish Us Luck!!! > 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!! > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Hi, I second 's wonderful post to you. There is always the chance she will do better off the diet and on a low trileptal dose than with anything else you have tried. I'm hoping for that. If that doesn't work, my next hope is that the metabolic issues can be resolved and the diet can be tried again in the future, if needed. You have taken the scary approach before (weaning the meds), and if not for the acidosis, it would have worked. How bad were Langan's seizures before keto, and are you looking at the Vagus Nerve stimulator? I'll be thinking of you and looking for your posts over the next few weeks. Langan will probably really enjoy all the new foods she will get to have. Gretchen > 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 Lots and lots of luck to you guys! Saro....Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 You should be prepared to have many seizures with a quick wean off the diet. You may need to use an emergency medication or go to the emergency at the hospital. It sounds like the diet may be working for you. Bill langansmom wrote: > 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 With her metabolism maybe 2:1 ratio is adequate for seizure control. Low ketones and seizures, large ketones and seizures stopped? Bill langansmom wrote: > 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 Thanks ! I'll be keeping an eye on and his progress. I saw his pix in the photo page. He is such a cutie!! > Luck Much of it from this way - > > > > ----- Original Message ----- > From: langansmom > > > 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! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Hi , I totally know you you feel about the weaning, I'm terrified myself when we start it too. Good luck with everything, and I hope just the low dose of trileptal will kick in. Satnam, mom to Kristan, 21 months Keto kid since August 2003 > 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...
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