Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Hey there, - UGH... sorry to hear about the seizure! BUT... as I read thru your message - am wondering if Langan is coming down w/a tummy bug or is cutting a tooth? Maybe the seizure was related to not feeling quite up to par. Just wondered since she spit out her meds. Does she usually do that or is it new? I would think if could " possibly " be due to the ratio change as well. It was probably enough of a change to throw her system for a loop. I'd definitely hold off increasing the Trileptal until after you are SURE it's not related to a bug of some kind. I laughed when I read how much fruit Langan gets now - I know how she adores fruit (and I can't get to eat ANY!) Can't help you w/the ketones being low before bed and high upon awakening - will be waiting to hear a response to that one! HEY - - question for ya. I'm making my lactose free yogurt this morning - made it w/the yeast starter instead of plain yogurt. Did you ever do this or did you always use yogurt as the starter? Also, how much yogurt cream do you give Langan w/each meal? How do you calculate it? Do you just " pretend " you're using regular cream? Thought you might have to add extra numbers for the starter. Did you flavor it w/anything? I'm having a REALLY hard time getting 's vitamin in. He won't take it in his water like he used to and won't let me syringe it in. I'm thinking if I can't hide it in the yogurt, I'll have to switch to a new multivitamin b/c those 3 tsps. are a struggle. Am thinkin the kid hasn't had the whole dose in about a month and obviously he needs the whole amount. Was so worried that I took him in for blood work today to see if something jumps out. He seems more wobbly lately - don't know if it's b/c he has been sick for the last week or if it's a vit. deficiency. Am thinking of giving him carnitine to see if that helps w/the coordination. Well, gotta run - am making up some new meal plans - trying to stay away w/foods w/salicylites which ain't easy. HUGS to Langan! --- langansmom tuckerwing@...> wrote: > Hello all. Well, per the neuro's ok, we lowered > Langan to a 2:1 > ratio on Saturday. Wow! What a difference in food! > But for the > scale, I would swear she wasn't even on keto any > more. She gets more > fruit now than I think she ate BEFORE the diet. And > she is loving it! > > On to the not so great part: After 13 days seizure > free (on 3:1 > ratio and small amount of trileptal), she had a sz > Saturday night. > She spit out most of her trileptal dose a few hours > before, so I have > no idea whether it was that or the new ratio or her > adjusting to the > new ratio. Ugh. Last night, she woke up and looked > like she was > going to have a sz, but she seemed to " shake it off " > and went back to > sleep. So who knows. I don't want to increase the > meds, esp. since > she is also waking up at night with what appears to > be tummy pain and > I worry that it is the meds, but at the same time I > am not sure what > to do. We are coming off keto b/c of the acidosis, > so it is only a > matter of time, but when it comes to the meds I am > all about delay, > delay, delay. > > I took BHB levels and they are strange- really low > before bed and > then large in the morning????? That is the total > opposite of how > they have been. I wonder if they are low at night > b/c of all the > extra carbs during the day and then are getting > higher overnight when > she's not eating??? Any thoughts from the keto > experts out there? > > Also, do you get withdrawal when coming down off of > keto, like you do > with the meds? I am trying to decide whether the sz > and the almost > sz last night could be withdrawal or whether we need > to up the > trileptal. Should I just hold tight for a week and > see if things > settle? That 13 days spoiled me.... > > Thanks! > > , mom to Langan, 2 yrs old and keto kid since > 11/03; med free > 4/2/04 until this month, now coming off keto due to > metabolic > acidosis and on 2:1 ratio and small amount of > trileptal. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Hey there, - UGH... sorry to hear about the seizure! BUT... as I read thru your message - am wondering if Langan is coming down w/a tummy bug or is cutting a tooth? Maybe the seizure was related to not feeling quite up to par. Just wondered since she spit out her meds. Does she usually do that or is it new? I would think if could " possibly " be due to the ratio change as well. It was probably enough of a change to throw her system for a loop. I'd definitely hold off increasing the Trileptal until after you are SURE it's not related to a bug of some kind. I laughed when I read how much fruit Langan gets now - I know how she adores fruit (and I can't get to eat ANY!) Can't help you w/the ketones being low before bed and high upon awakening - will be waiting to hear a response to that one! HEY - - question for ya. I'm making my lactose free yogurt this morning - made it w/the yeast starter instead of plain yogurt. Did you ever do this or did you always use yogurt as the starter? Also, how much yogurt cream do you give Langan w/each meal? How do you calculate it? Do you just " pretend " you're using regular cream? Thought you might have to add extra numbers for the starter. Did you flavor it w/anything? I'm having a REALLY hard time getting 's vitamin in. He won't take it in his water like he used to and won't let me syringe it in. I'm thinking if I can't hide it in the yogurt, I'll have to switch to a new multivitamin b/c those 3 tsps. are a struggle. Am thinkin the kid hasn't had the whole dose in about a month and obviously he needs the whole amount. Was so worried that I took him in for blood work today to see if something jumps out. He seems more wobbly lately - don't know if it's b/c he has been sick for the last week or if it's a vit. deficiency. Am thinking of giving him carnitine to see if that helps w/the coordination. Well, gotta run - am making up some new meal plans - trying to stay away w/foods w/salicylites which ain't easy. HUGS to Langan! --- langansmom tuckerwing@...> wrote: > Hello all. Well, per the neuro's ok, we lowered > Langan to a 2:1 > ratio on Saturday. Wow! What a difference in food! > But for the > scale, I would swear she wasn't even on keto any > more. She gets more > fruit now than I think she ate BEFORE the diet. And > she is loving it! > > On to the not so great part: After 13 days seizure > free (on 3:1 > ratio and small amount of trileptal), she had a sz > Saturday night. > She spit out most of her trileptal dose a few hours > before, so I have > no idea whether it was that or the new ratio or her > adjusting to the > new ratio. Ugh. Last night, she woke up and looked > like she was > going to have a sz, but she seemed to " shake it off " > and went back to > sleep. So who knows. I don't want to increase the > meds, esp. since > she is also waking up at night with what appears to > be tummy pain and > I worry that it is the meds, but at the same time I > am not sure what > to do. We are coming off keto b/c of the acidosis, > so it is only a > matter of time, but when it comes to the meds I am > all about delay, > delay, delay. > > I took BHB levels and they are strange- really low > before bed and > then large in the morning????? That is the total > opposite of how > they have been. I wonder if they are low at night > b/c of all the > extra carbs during the day and then are getting > higher overnight when > she's not eating??? Any thoughts from the keto > experts out there? > > Also, do you get withdrawal when coming down off of > keto, like you do > with the meds? I am trying to decide whether the sz > and the almost > sz last night could be withdrawal or whether we need > to up the > trileptal. Should I just hold tight for a week and > see if things > settle? That 13 days spoiled me.... > > Thanks! > > , mom to Langan, 2 yrs old and keto kid since > 11/03; med free > 4/2/04 until this month, now coming off keto due to > metabolic > acidosis and on 2:1 ratio and small amount of > trileptal. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Hey there, - UGH... sorry to hear about the seizure! BUT... as I read thru your message - am wondering if Langan is coming down w/a tummy bug or is cutting a tooth? Maybe the seizure was related to not feeling quite up to par. Just wondered since she spit out her meds. Does she usually do that or is it new? I would think if could " possibly " be due to the ratio change as well. It was probably enough of a change to throw her system for a loop. I'd definitely hold off increasing the Trileptal until after you are SURE it's not related to a bug of some kind. I laughed when I read how much fruit Langan gets now - I know how she adores fruit (and I can't get to eat ANY!) Can't help you w/the ketones being low before bed and high upon awakening - will be waiting to hear a response to that one! HEY - - question for ya. I'm making my lactose free yogurt this morning - made it w/the yeast starter instead of plain yogurt. Did you ever do this or did you always use yogurt as the starter? Also, how much yogurt cream do you give Langan w/each meal? How do you calculate it? Do you just " pretend " you're using regular cream? Thought you might have to add extra numbers for the starter. Did you flavor it w/anything? I'm having a REALLY hard time getting 's vitamin in. He won't take it in his water like he used to and won't let me syringe it in. I'm thinking if I can't hide it in the yogurt, I'll have to switch to a new multivitamin b/c those 3 tsps. are a struggle. Am thinkin the kid hasn't had the whole dose in about a month and obviously he needs the whole amount. Was so worried that I took him in for blood work today to see if something jumps out. He seems more wobbly lately - don't know if it's b/c he has been sick for the last week or if it's a vit. deficiency. Am thinking of giving him carnitine to see if that helps w/the coordination. Well, gotta run - am making up some new meal plans - trying to stay away w/foods w/salicylites which ain't easy. HUGS to Langan! --- langansmom tuckerwing@...> wrote: > Hello all. Well, per the neuro's ok, we lowered > Langan to a 2:1 > ratio on Saturday. Wow! What a difference in food! > But for the > scale, I would swear she wasn't even on keto any > more. She gets more > fruit now than I think she ate BEFORE the diet. And > she is loving it! > > On to the not so great part: After 13 days seizure > free (on 3:1 > ratio and small amount of trileptal), she had a sz > Saturday night. > She spit out most of her trileptal dose a few hours > before, so I have > no idea whether it was that or the new ratio or her > adjusting to the > new ratio. Ugh. Last night, she woke up and looked > like she was > going to have a sz, but she seemed to " shake it off " > and went back to > sleep. So who knows. I don't want to increase the > meds, esp. since > she is also waking up at night with what appears to > be tummy pain and > I worry that it is the meds, but at the same time I > am not sure what > to do. We are coming off keto b/c of the acidosis, > so it is only a > matter of time, but when it comes to the meds I am > all about delay, > delay, delay. > > I took BHB levels and they are strange- really low > before bed and > then large in the morning????? That is the total > opposite of how > they have been. I wonder if they are low at night > b/c of all the > extra carbs during the day and then are getting > higher overnight when > she's not eating??? Any thoughts from the keto > experts out there? > > Also, do you get withdrawal when coming down off of > keto, like you do > with the meds? I am trying to decide whether the sz > and the almost > sz last night could be withdrawal or whether we need > to up the > trileptal. Should I just hold tight for a week and > see if things > settle? That 13 days spoiled me.... > > Thanks! > > , mom to Langan, 2 yrs old and keto kid since > 11/03; med free > 4/2/04 until this month, now coming off keto due to > metabolic > acidosis and on 2:1 ratio and small amount of > trileptal. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 Hi - So good to hear from you! You know, I'm absolutely amazed at all the success stories I've been reading about on here lately! I have been in the best mood hearing how kids are progressing - it is so inspirational and it truly brings hope on otherwise " not so good days " . Hearing first hand how these children blossom once the seizures are controlled makes me want to fight even harder to get " complete " control. Langan sounds like a COMPLETE different little girl. I swear it sounds like a dream to hear that she is taking assisted steps, trying to CLIMB out of here jumpoline, jumping, vocalizing and probably loving to hear her little voice - I'm sure she is " all that! " and more! This is a kid who not long ago was rolling around on the floor all day. It seems unreal to me that a few months can make that much difference in development. How much fun for you all! I'm just so happy, inspired, encouraged, and optimistic for Langan. Close to a miracle, in my opinion. HOORAY that her bicarbs came back normal (I actually thought this was the second time they've come back normal) - probably a dream of mine. I'm sure she is happy, happy,happy because she feels good for the first time in like, forever! Don't blame you one bit for not wanting to increase the Trileptal. I, too, would deal w/the partials as opposed to increasing the drug. You don't want to lose what control you have now, and she is obviously doing quite well developmentally where she is at. Yeah, tend to agree w/you on your feelings of things " building " up to the point of a seizure. can't go much longer than two weeks no matter what w/out a t/c and then out of nowhere he'll have one then go another two wks. WEIRD. I really have a gut feeling that Langan is going to be AOK! She'll be talking in sentences before you know it and riding her bike down the driveway, like Shan. She just is a fighter and has already overcome so much. Her stubborn streak has probably helped her a bit (ha) but boy, she is truly determined little girl. WOW. continues to do well - no seizures since he was sick. Almost increased his carnitor one more time but decided to hold off (he's still at 990mg). Didn't want to risk the increased seizures. Figured I could always increase in a month or so. Also decided to raise his ratio to 3.5:1 and lower his calories by 30 to try to get some weight off. But... am not going to do anything for one more week. You know how good I am at making only one change at a time (not) but figured I'd do it right this time around so I don't have to " undo " anything. Hey, I'd love for you to send me those blood ketone sticks but only if you let me pay you for them. They are too expensive to give away. Do you have a personal e-mail address that I could send you my home address? Let me know. Well, gotta go make my last two keto meals for the day and feed on time. Something you DON'T have to worry about anymore. Does Langan love food these days, or what? I know she at least loves her juice - and you can use food as a motivator during therapy now. I'm sure if I could do that, would be stacking lots of blocks (his least favorite thing to try). Ha! HUGS to Langan! I continue to think of you oodles of times a day! --- langansmom tuckerwing@...> wrote: > > , > > Thanks for checking on us! I am still here- checking > on all my > favorite keto kids. Thanks for asking about Langan. > She is doing > very well. Her bicarbs yesterday were NORMAL- first > time since this > whole acidosis nightmare began. She is continuing > to take assisted > steps and thinks she is " all that " when she does > (and she is, as far > as her unbiased mommy is concerned!). This weekend > she pulled to > stand in her little baby jumpoline, which is like a > little space walk > thing, and was bouncing hard and holding onto the > sides and trying to > climb out. She is a mess. Her therapists are > thrilled with her > progress, and even her speech therapist commented > yesterday that she > is seeing lots of improvement (one of our many areas > of concern, > since she is not yet talking). Her pediatrician > commented yesterday > about the amazing difference in her muscle tone- > said she looked like > a totally different baby. And, probably the best > thing, she is > happy, happy, happy. She has recently decided that > yelling at the > top of her lungs is just more fun than we could ever > know, so she > does it all the time and laughs after. It makes it > hard to bring her > anywhere quiet- the library trips are out of the > question these > days. = ) I am hoping she gets past this phase > soon, but her > therapist keeps telling me that any expressive > language is good so > I'll keep popping the tylenols and looking into ear > plugs.... LOL > > On the seizure front, we're still seeing some > partials at night and I > am keeping an eye on them. There's no real pattern > to them- one this > night and then none for several nights and then > another one and then > gone again- and I can't seem to discover any foods > or anything that > cause problems. It is like SOMETHING builds up and > then releases > with one of those and the pattern starts again but > without any > pattern. Ugh. Who knows. At this point I am > content to live with > them instead of upping the meds. I remember too > clearly the pattern > of upping the meds with every seizure until she was > all doped up and > still having seizures. No thank you! That lamictal > wean was enough > to cure me of that one! SO we're hanging tight for > now and we'll see > how it goes. > > I am glad to hear that no news is good news with > . I saw some > earlier posts and it looks like szs are spreading > WAY out for him. > YAY!!!! I won't ask about it- I know that jinx > factor- but please > know I am thinking of you guys and following his > progress here. > > BTW, do you use the medisense blood glucose/ketone > meter? I am > pretty sure I have an unopened box of blood ketone > test strips that I > have no use for, if you want them. They are too > pricey to just > expire sitting in Langan's room, so if you want them > they are yours. > Just let me know. > > Hugs to ! > > , mom to Langan, 2 yrs old and keto kid 11/03 > to 9/7/04; weaned > due to severe metabolic acidosis but bicarbs now > NORMAL- YAHOO!! > > > > Hi - > > Was just thinking of you guys - wondering how > Langan > > is doing this week - taking more steps?! > > > > 's status quo - no news is good news around > > here. > > HUGS! > > > > > > > > > > __________________________________ > > Do you Yahoo!? > > Yahoo! Mail - 50x more storage than other > providers! > > http://promotions.yahoo.com/new_mail > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 Hi , I'm so glad to see that Langan's bicarbs are normal and that she is taking great steps developementally (sp). I haven't been following the list closely so don't know what else you've done apart from weaning the diet? Is Langan only on Tripetal now? Rohan is waiting for the VNS still. That sort of thing takes ever so long in the UK. Hugs to Langan Saro....Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 , good luck w/ the trip, I'm sure you are terrified. It's a scary thought, always has been to me too. I usually carry both Ativan and Diastat on the plane with me, " in case. " Sometimes I've even given Jake a small dose of Ativan before we take off, preventatively. Am sure you've covered your bases but thought it worth mentioning. Merry Christmas, she'll be fine I'm sure. Safe trip and happy holidays. 35 days is a nice stretch! Barb Swoyer, Jake's mom > > We head down to Louisiana for Christmas next Wednesday. It is only > an hour flight, but I am terrified. It will be Langan's first flight > since that nightmare airport experience in October. Wish us luck!! > At least I know New Orleans well enough to know how to get to the > hospitals if we need one, but here's hoping we don't. > > I hope all is well with you guys. Update me when you get a chance. > I miss following everyone here! > > Happy Holidays! > > , mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned > due to severe persistent metabolic acidosis (now thought to be pre- > existing), now on trileptal, but keto kid at heart forever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Thanks, Barb. Happy Holidays to you and Jake as well! > , good luck w/ the trip, I'm sure you are terrified. It's a scary > thought, always has been to me too. I usually carry both Ativan and Diastat > on the plane with me, " in case. " Sometimes I've even given Jake a small > dose of Ativan before we take off, preventatively. Am sure you've covered > your bases but thought it worth mentioning. > Merry Christmas, she'll be fine I'm sure. Safe trip and happy holidays. 35 > days is a nice stretch! > Barb Swoyer, Jake's mom > > > > > We head down to Louisiana for Christmas next Wednesday. It is only > > an hour flight, but I am terrified. It will be Langan's first flight > > since that nightmare airport experience in October. Wish us luck!! > > At least I know New Orleans well enough to know how to get to the > > hospitals if we need one, but here's hoping we don't. > > > > I hope all is well with you guys. Update me when you get a chance. > > I miss following everyone here! > > > > Happy Holidays! > > > > , mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned > > due to severe persistent metabolic acidosis (now thought to be pre- > > existing), now on trileptal, but keto kid at heart forever. Quote Link to comment Share on other sites More sharing options...
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