Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 on 8/16/04 1:52 PM, Atwater at .Atwater@... wrote: .... Thank you for your help and reply. Sometimes it feels so lonely since I know nobody in the area or my friends with these issues. Maybe in Kindergarten I will run into someone in the same predicament. I don't have an IEP person for her as of yet. I asked for one, but they won't evaluate her until she starts school. I asked for an earlier one, but they said it wasn't necessary. I heard you need to fight a bit to get help, since this is tax payers money, but I also heard our school is a pretty good school. I don't know about disabilities though. Our school is only half days for kindergarten, so I will have to take her to the daycare she's known for years afterwards. I will then have to have her there for the afternoon where there will be lunch and snacks. I will need to have some meetings with them to see what I need to do about that. I am also self employed, so I will have some free time, but like I mentioned, she's very clingy to me and she will want to be with me so I won't be able to stay or help out. I wish I could. Sheridan also has some emotional issues with separation from me and she cries sometimes during the day. I just don't know what to expect since this is a whole new school. She moves around just like all the other kids, but she's so behind in her learning skills. She certainly cannot focus at this time. Who knows...it could only be weeks away with this diet! Any suggestions? I'm so nervous. Thanks a million for your email. I wish our kids were going to the same school. I'm sure Sheridan feels alone also. I don't want that. I also want to give this diet as much chance as I possibly can. I think the meds blurr up the brain too much to concentrate, so if I can get this diet to stop the seizures, then she can actually focus to learn. Thanks again.... At 02:10 PM 8/16/2004, you wrote: >, >stella has been on the diet since May 10th of this year, she had 3 days of >seizure freedom from day 1 then has seized almost everyday since. She has >mostly drops, but also lots of complex/partial seizures and tonic/clonics. >I have stopped giving her stevia, other than that, I give her mostly >fruit/veggies/lots of oil/cheese and some butter/cream. We use only organic >food too. >She too is to start kindergarden next month, she will have an aid w/ her as >her falls are very dangerous. Do you have an IEP for her? We need to make >some additions for ours to include the keto diet, I do hope it's a smooth >transition for your daughter. Both my husband and I are self employed so we >spend our days off at school just in case. >I wish you the best of luck, and hang in there, just when I was thinking of >giving up, the sun started to shine. Our children are remarkable, and on >good days it fuels us for the long days of many seizures. > >amanda >-- ><http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143>h ttp://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143 > > > > > > > " 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 23, 2004 Report Share Posted August 23, 2004 , Hello. So glad to hear from you! To answer your question, I don't think Langan is cutting a tooth- she has them all for now. And I don't think she has a tummy bug but I could be wrong. I am bringing her to the doc this evening to look in her ears- I am wondering if maybe that ear infection earlier this month didn't clear all the way up. She went most of her life with only 3 ear infections but now she is around other kids more and is into everything so I am wondering if we're going to see the more typical infection stuff. We'll see. Also, I have talked to some adults who take trileptal who say it is really tough on the stomach so grrrrr maybe that is part of it. I don't know. On the yogurt, I count it the same as the cream and I use the same amount as I did with the cream- just no need to flavor it b/c it is tasty by itself. I think Rhonda Ackerman said someone else said to cut the carb #s in half, but Rhonda thought that wasn't accurate either. I just thought it would be safest to count them the same as long as I am only using the yogurt. Sorry if that's not so helpful! What are salycylites? Shows how much I know about foods.... What foods are they in? I read " Feeding the Starving Brain " about natural food type remedies to neuro problems but don't remember if they talked about them. I need to pull that book out and see. You know, I am always looking for the answer to this mess.... Sorry is wobbly lately. I hope that changes soon. I know that when Langan isn't feeling well her strength is off and she is wobbly, so hopefully as he gets over the bug he had then he'll be back stronger than ever! Keep me posted and give that little guy big hugs for me! > > > 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 , Hello. So glad to hear from you! To answer your question, I don't think Langan is cutting a tooth- she has them all for now. And I don't think she has a tummy bug but I could be wrong. I am bringing her to the doc this evening to look in her ears- I am wondering if maybe that ear infection earlier this month didn't clear all the way up. She went most of her life with only 3 ear infections but now she is around other kids more and is into everything so I am wondering if we're going to see the more typical infection stuff. We'll see. Also, I have talked to some adults who take trileptal who say it is really tough on the stomach so grrrrr maybe that is part of it. I don't know. On the yogurt, I count it the same as the cream and I use the same amount as I did with the cream- just no need to flavor it b/c it is tasty by itself. I think Rhonda Ackerman said someone else said to cut the carb #s in half, but Rhonda thought that wasn't accurate either. I just thought it would be safest to count them the same as long as I am only using the yogurt. Sorry if that's not so helpful! What are salycylites? Shows how much I know about foods.... What foods are they in? I read " Feeding the Starving Brain " about natural food type remedies to neuro problems but don't remember if they talked about them. I need to pull that book out and see. You know, I am always looking for the answer to this mess.... Sorry is wobbly lately. I hope that changes soon. I know that when Langan isn't feeling well her strength is off and she is wobbly, so hopefully as he gets over the bug he had then he'll be back stronger than ever! Keep me posted and give that little guy big hugs for me! > > > 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 , Hello. So glad to hear from you! To answer your question, I don't think Langan is cutting a tooth- she has them all for now. And I don't think she has a tummy bug but I could be wrong. I am bringing her to the doc this evening to look in her ears- I am wondering if maybe that ear infection earlier this month didn't clear all the way up. She went most of her life with only 3 ear infections but now she is around other kids more and is into everything so I am wondering if we're going to see the more typical infection stuff. We'll see. Also, I have talked to some adults who take trileptal who say it is really tough on the stomach so grrrrr maybe that is part of it. I don't know. On the yogurt, I count it the same as the cream and I use the same amount as I did with the cream- just no need to flavor it b/c it is tasty by itself. I think Rhonda Ackerman said someone else said to cut the carb #s in half, but Rhonda thought that wasn't accurate either. I just thought it would be safest to count them the same as long as I am only using the yogurt. Sorry if that's not so helpful! What are salycylites? Shows how much I know about foods.... What foods are they in? I read " Feeding the Starving Brain " about natural food type remedies to neuro problems but don't remember if they talked about them. I need to pull that book out and see. You know, I am always looking for the answer to this mess.... Sorry is wobbly lately. I hope that changes soon. I know that when Langan isn't feeling well her strength is off and she is wobbly, so hopefully as he gets over the bug he had then he'll be back stronger than ever! Keep me posted and give that little guy big hugs for me! > > > 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 24, 2004 Report Share Posted August 24, 2004 Hi - Your posting caught me off guard - Is Jess alright? The other --- mmc@... wrote: > I have seen this before but it was good to reread. > But this quote > > > > Pillas: I tell parents all the time to draw an > imaginary line and to put a > > foot on either side of the line. One foot should > always be in hope, > > because if you don't have hope you don't have > anything, and the other > > foot should be in reality. > > > > brought tears to my eyes. I have been trying to > convince myself lately > to have have hope. If I expect the worst (or at > least a continuation of > the same) and get better than that, its gravy. But > every time I have > hope, its devestating. > Sorry for the downer, just really hit me when I read > it > , 's mom > > Hallie wrote: > > > http://my.webmd.com/content/article/78/95807.htm > > > > This was interesting. > > Hallie > > > > > > " 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 24, 2004 Report Share Posted August 24, 2004 michelle paulson wrote: > Hi - > Your posting caught me off guard - Is Jess alright? > > The other Oh she is fine........for the moment. Its just that I certainly don't think (won't let myself believe) by any stretch of the imagination, that THEY are gone. They are just in hiatus......for now. I basically believe this is her life story (well, thats a little inaccurate cuz she sure can have a great life in between bouts!) and if we find something that gives us a year or two of control ( like the diet did on two separate occasions) thats as good as we will ever do, until we find the next temp fix. So at the moment, either the carnosine or the keppra or the combination is working (geez that would be the first time an AED ever worked for us with the exception of the diamox which only worked in conjunction with the diet). But I just don't expect it to last. Sorry, geuss that was a long convoluted answer to a relatively simple question - Jess if fine, mom is just a bit strange Thanks for asking > > > --- mmc@... wrote: > > > I have seen this before but it was good to reread. > > But this quote > > > > > > > Pillas: I tell parents all the time to draw an > > imaginary line and to put a > > > foot on either side of the line. One foot should > > always be in hope, > > > because if you don't have hope you don't have > > anything, and the other > > > foot should be in reality. > > > > > > > brought tears to my eyes. I have been trying to > > convince myself lately > > to have have hope. If I expect the worst (or at > > least a continuation of > > the same) and get better than that, its gravy. But > > every time I have > > hope, its devestating. > > Sorry for the downer, just really hit me when I read > > it > > , 's mom > > > > Hallie wrote: > > > > > http://my.webmd.com/content/article/78/95807.htm > > > > > > This was interesting. > > > Hallie > > > > > > > > > " 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 24, 2004 Report Share Posted August 24, 2004 - Yeah... know what you mean (big sigh). I feel the same way about 's myoclonic jerks. I feel that they are there - just below the surface and given the tiniest amount of stress - they'll come back. But, for Jess, even if it is a temporary fix - the carnosine and Keppra ARE working and you know what - maybe that's all she will need. It sounds like she is a normal active teenager who is happy - - AND she has one proactive mom who is on top of things and will find temp. fix after temp. fix to hold those buggers off IF that is what it takes. If you can find a way to keep THEM back for a good two years solid - get her thru those teenage years - perhaps you can always keep them at bay even if she has to work at it. I guess I always hope that the older they get the more they will learn about their own bodies and can head them off themselves. You are right about the quote - always hope - and it doesn't hurt to pray hard too! Big hugs to Jess! PS - is she still taking Carn-Aware or the NOW brand? --- mmc@... wrote: > michelle paulson wrote: > > > Hi - > > Your posting caught me off guard - Is Jess > alright? > > > > The other > > Oh she is fine........for the moment. Its just that > I certainly don't > think (won't let myself believe) by any stretch of > the imagination, that > THEY are gone. They are just in hiatus......for now. > I basically believe > this is her life story (well, thats a little > inaccurate cuz she sure can > have a great life in between bouts!) and if we find > something that gives > us a year or two of control ( like the diet did on > two separate > occasions) thats as good as we will ever do, until > we find the next temp > fix. So at the moment, either the carnosine or the > keppra or the > combination is working (geez that would be the first > time an AED ever > worked for us with the exception of the diamox which > only worked in > conjunction with the diet). But I just don't expect > it to last. > > Sorry, geuss that was a long convoluted answer to a > relatively simple > question - Jess if fine, mom is just a bit strange > > Thanks for asking > > > > > > > > --- mmc@... wrote: > > > > > I have seen this before but it was good to > reread. > > > But this quote > > > > > > > > > > Pillas: I tell parents all the time to draw an > > > imaginary line and to put a > > > > foot on either side of the line. One foot > should > > > always be in hope, > > > > because if you don't have hope you don't have > > > anything, and the other > > > > foot should be in reality. > > > > > > > > > > brought tears to my eyes. I have been trying to > > > convince myself lately > > > to have have hope. If I expect the worst (or at > > > least a continuation of > > > the same) and get better than that, its gravy. > But > > > every time I have > > > hope, its devestating. > > > Sorry for the downer, just really hit me when I > read > > > it > > > , 's mom > > > > > > Hallie wrote: > > > > > > > > http://my.webmd.com/content/article/78/95807.htm > > > > > > > > This was interesting. > > > > Hallie > > > > > > > > > > > > " 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 24, 2004 Report Share Posted August 24, 2004 michelle paulson wrote: > If you can find a way > to keep THEM back for a good two years solid - get her > thru those teenage years - perhaps you can always keep > them at bay even if she has to work at it. I guess I > always hope that the older they get the more they will > learn about their own bodies and can head them off > themselves. Well I might have to find a bundle of fixes to get her through the teenage years.......she is only 11 now But true enough, something does seem to be doing the trick at the moment - fingers, toes, eyes and everything else crossed! > PS - is she still taking Carn-Aware or the NOW brand? > We have been using the NOW brand since this past Jan with good success Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 , I agree with you that the success stories here lately- including 's!- are so heart-warming. I hope it gives the other parents who are going through tough seizure times (remember those? ugh!) some fuel to keep on fighting. I know this site helped me so much during those dark days. It really is a fabulous little family! Langan's bicarbs on the last check were " low normal " - 21. They considered it in the range of normal but since she was off of keto they wanted it higher. So here we are. I am just so happy about that. Langan has a long way to go before she is talking in sentences or riding a bike, and I really don't know where she'll be or how far she'll come, but it is so nice to see change in her. You know me, I get impatient and want to see it all NOW. But you are right- it wasn't so long ago that sitting was a big thing for her. I hope we keep going in the right direction- I know how fragile seizure control, even partial control like we have, can be. So we just enjoy what we have for now. My father in law, who is a fabulous guy but very practical and logical (a medical doc) emailed today. We emailed him pix of Langan standing and he wrote back that it brought tears to his eyes. That said so much to me. He would not say something like that lightly. He saw her last month and could not believe the change in her. He'll be in next week so I can hardly wait. If he thought she was doing well then.... at least I hope we are still in a happy place developmentally! On the blood strips, no way will I let you pay for them. It's not like I could return them and it's not like I will use them. So they would just go to waste here. I bought two boxes during the wean b/c I had to mail order them and I was always going a few days without some, and I overestimated how many we would need. So I do have the unopened box. Just email me at tuckerwing@... with an address and I will send them on. It will make me feel good to know that my favorite little guy is getting some benefit from them! Hugs to the little guy! I'll " talk " to you soon! > > > 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 6, 2004 Report Share Posted October 6, 2004 Hi - It's funny, we used to think of as kind of stocky too, before the diet. When we started him on it last Oct., he weighed 30 lbs (not yet 2 yrs. old). He lost a couple lbs. initially, then right around Christmas he got hit with the flu and pneumonia back to back. At his lowest he was 24 lbs. 6 oz....not good. He gradually went up again over the spring and then summer just kind of plateaued. I know how it must feel like you're giving up control to let Theresa calculate 's meals. I can't believe what hard work that must be though. Although, I really would trust her. I have to admit, I would love to go to a lower ratio for , but it kind of scares me too. The only real changes we have ever made are the calories. As for what he eats now, he has gotten very picky! Basically all he will eat now is a sausage or hamburger meal (with margarine/oil, veggie-also picky about fruit, and cream) and we give him an eggnog as his bedtime meal. He started out liking quite a few things though....chicken, mozzarella cheese, hotdogs, bacon, and of course hamburger and sausage. He's definitely a meat eater : ) ! But for being so picky, he definitely shows an interest in what others eat...he doesn't get upset at all, just kind of watches in fascination. Have you let Theresa know that you are willing to change the ratio? I'm waiting to hear back about the cal. increase, but I might also ask about a ratio change instead of waiting for his Nov. appt. Good luck and please keep me posted on how 's doing! {Hugs} michelle paulson michelle101291@...> wrote: Hi - Thanks so much for taking the time to respond! I actually laughed out loud while reading your message (chuckled a good long while). I'll tell you why in a minute. You know, if I had the energy, I'd go back in the files section to the last time you and I talked about and 's size. I SWEAR at one point, they were roughly the same size (ht./wt). Not anymore. I just want you to know that is now exactly " 37 " lbs. and is exactly 36 inches. (95 per centile wt. vs. 25th for ht.) OK - there is something just WRONG there. HA HA - a bit of a gap. Theresa said that he should be more like 29 lbs. - yeah in a perfect world - I don't think could ever lose 8 lbs. He's always been stocky but I will admit, he's now progressed to chunky (and that's being nice). He's currently at 1030 cals., 3:1 ratio, and 17g prot. Theresa wants us to go down to 1000 calories, 3.5:1 ratio and 16g. protein to try to get some wt. off. It's hard for me to give up control of this diet - I've been on my own w/out support of a team of Dr.s since we started this diet but I'm going to do it and trust Theresa that this is the way to go. It's very encouraging to hear that has been seizure free since diet initiation and is now med free - Theresa obviously had the right idea from the beginning where is concerned. You are right, ideally, kids ht./wt should be in the 15-25 per centile or there abouts for optimal seizure control. I'm sure that has something to do w/'s success (and 's lack of). I hope I can get 's wt. down at least 5 lbs. - he certainly needs to lose at least that. Don't blame you for thinkin' it might be time for a change in something for now that he is more active (being in Pre-K - what a big boy). Although, if it ain't broken, why fix it, I'm also thinkin. Perhaps, though, it might be time to try a lower ratio if he's still at 4:1. I would think you could at least go down to 3.5:1 to see what happens and it would be even more fun to go down to 3:1 from there if he tolerates the change well. How exciting for you. I'm sure there would be lots more choices out there for him at the lower ratio. What kinds of foods do you give him at 4:1? Like, what is a typical meal? Does he pretty much like anything you give him? Well, thanks, again for enlightening me on a truly ideal wt. Hey, if was in the 90th percentile pre diet, how long did it take him to drop the wt.? Big hugs to and wishing you lots of continued success if/when you make a change. (mom to ) --- jasonsmom jasonsmom001@...> wrote: > Hi - > I'm so glad you finally got to meet with Dr. Wang > and Theresa! They really are great. Funny you > should ask about calories and weight. I was just > going to email Theresa about that. is 27 lbs. > 10 oz....hasn't gained much in a couple months and > his height is about 35 1/2 inches. We're thinking > cals. need to be increased maybe. He's also much > more active (hard for us to imagine!) since he > started pre-k so I want to see what she thinks. > is at a 4:1 ratio, 1100 calories, 16.5 g of > protein per day. Before the diet he was 90th > percentile for weight and 75-90th for height. Right > now he is between 15-25th for both, which I do know > is good for seizure control, but I really think he > might be needing more calories now. We started out > at 950 calories and gradually increased from there, > but the ratio has stayed the same. We have another > appt. at Strong in Nov. and I'm kind of wondering if > maybe we will do a downward ratio change? Haven't > asked Theresa yet though. > Maybe a ratio change is what you need to tackle > those early morning seizures for ? Let me > know what you decide to do! > > > michelle paulson michelle101291@...> wrote: > Hi - > Just read your post - glad to see you are still > " lurking " since we haven't heard from you in awhile. > > > I'm so glad to hear that 's now med free and > continued seizure free. Bet you are glad to have > the > whole med wean behind you. > > We had our first apt. at Strong (finally) - met > w/Dr. > Wang and Theresa. I absolutely love Theresa - she > has > been a great help. 's down to early morning > seizures one every couple of weeks now so trying to > figure out how to get rid of them. Theresa > suggested > going from a 3:1 ratio to 3.5:1 and lowering his > calories a tad. > > I know I've asked you this before, but what is > 's > stats - i.e. how tall is he/what does he weigh - > what's his ratio/cal/protein? Did you have to > tweak > the diet at all or have you changed anything? Just > trying to convince myself a ratio change is needed - > scared to go there but I do trust Theresa so....... > > > Thanks, ! > > (mom to - 2.5yrs. old - ketokid > since > 6/03 - med free since 3/27/04 - working on the > seizure > free part) > > > > __________________________________ > Do you Yahoo!? > New and Improved Yahoo! Mail - Send 10MB messages! > http://promotions.yahoo.com/new_mail > > > " 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 December 8, 2004 Report Share Posted December 8, 2004 Hi - Thanks for thinking about us. 's appt had to be rescheduled to Dec. 2nd, so we were just there last week. No eeg - the woman who was supposed to do it was awful...wanted him fully asleep before even putting the probes on his head! We have NEVER had to do that before. After almost 2 hrs and only half his head done I had enough and we left. I talked to Kathy at Dr. Wang's office and she said there had been complaints about this woman before so I am going to write a letter. The woman was just so rude...too much to get into now. Dr. Wang didn't see any need to reschedule since he's been doing great and his eeg in Feb. was normal. We have to call with an update every 3 months and no appt. for a year! Anyway, Theresa thought we should leave the ratio where it is (why mess with something that's working) and we increased his calories. He's doing great in pre-k...5 mornings a week, so he's very busy! How are thing with -I really haven't been reading much email lately (actually since the school year started!) What's going on with his cals/ratio? Any appts. coming up at Strong? Hugs to you both. michelle paulson michelle101291@...> wrote: Hi - Just wanted to say hello - I haven't seen you post in forever but remembered had an appt. at Strong in early November. Also remembered you were going to ask Theresa about lowering 's ratio and/or increasing cals. How did your appt. go and more importantly, how is doing these days? HUGS! (mom to - nearly 3 yrs. old - ketokid since 6/03 - med free since 3/04 - working on the seizure free part) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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