Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 , Are you getting deep ketones on the ratio she's on? Did the dietitian want to increase her ratio? If she's not in deep ketosis I would go ahead and change the ratio. I don't think it would hurt to do both at the same time. We lowered meds at the same time we started the diet. Kinda the same. Better ketones shouldn't hurt anyway. Bobbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 We get deep ketones at the end of the day but they start off low and we think they are low in the middle of the night (when she is having seizures) so the dietician upped her ratio to 3.6:1 from 3.4:1. We're changing that starting tomorrow and I am wondering how long to wait to start the wean. Think it's ok to do both at the same time? Re: Speeding up the wean? , Are you getting deep ketones on the ratio she's on? Did the dietitian want to increase her ratio? If she's not in deep ketosis I would go ahead and change the ratio. I don't think it would hurt to do both at the same time. We lowered meds at the same time we started the diet. Kinda the same. Better ketones shouldn't hurt anyway. Bobbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 , Sounds like you've got a great plan...lucky Langan for having such a smart, involved momma. If it were me (and it isn't, remember...follow YOUR heart), I'd go ahead with both. If you are consistently seeing seizures at about the time the dose peaks, I'd definitely think there is something to it. The diet could be magnifying the effects of the lamictal. The lamictal may be interfering with the ketones, who knows? As Bobbi said, higher ketones aren't going to hurt for now, unless she starts showing signs of being too ketotic...I know you'll be on top of that if she does. Good luck! By the way, my husband has always been the one that needs to be convinced of everything, too. Remind him nicely that you know her better than anyone! Glenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 , If you make both changes you will never know if it is the wean or ratio change that improved or made the seizures worse. Go with your gut instinct to which you think may help improve the seizures and try it for a week or more. I’m leaning towards dropping the lamictal since you may be seeing a pattern after giving it. We had a seizure pattern with lamictal which resolved when we dropped it. I think the seizures may have come 1-2 hours after giving it. Rhonda (mom to Shan, age 8, ketokid 22 months) OK, Langan just had what I think was a simple partial seizure- woke up shaking and freaked out and could not be calmed. The shaking would stop and then start again. If it was a simple partial, it never generalized. It looked exactly like what she did last night, except last night it generalized. The interesting thing is that it happened EXACTLY 1 1/2 hours after her last lamictal dose. Her other seizures since starting the diet have also been 1 1/2 to 2 hours after a dose. My husband thinks I am crazy but I swear there has to be something to this. We planned to increase the ratio for a week and then start the weaning but I am tempted to do both starting tomorrow. Langan's normal seizure pattern was once a week but now they are coming so much more frequently. If it is the lamictal, don't I need to get rid of it ASAP? I hate the thought of giving it to her if it is causing these problems!! Any thoughts? , mom to Langan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 , I agree with Glenna!! My husband is the same. Our gut instinct is the best tool we have. Bobbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 That is what we are going to do, starting today. I went back and forth about changing two things at once but I really want her off the lamictal sooner rather than later, and at the same time I am concerned that her ketones are dipping so low in the morning. I think part of it may be that I am getting her to drink water at night but no food. She drinks so little of her allotment and has so much constipation. She gets thirsty in the night, so I keep water by the bed but I am thinking that may be what is dipping the ketones so low. I know they naturally dip, but this is a huge dip. And she is having seizures at the times when they register low so I hope upping the ratio will help. PLUS my husband is starting to hint that he wants to ditch the diet and go back to the AEDs and the sooner I get her off the AEDs the quicker he will realize that's not gonna happen until I am SURE this isn't going to work. Thanks for the advice! >From: hammett45@... >Reply-To: ketogenic >To: ketogenic >Subject: Re: Speeding up the wean? >Date: Mon, 15 Dec 2003 21:20:51 EST > _________________________________________________________________ Our best dial-up offer is back. Get MSN Dial-up Internet Service for 6 months @ $9.95/month now! http://join.msn.com/?page=dept/dialup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 I don't feel very smart at all these days but I am going to go ahead with both. It is just so hard to give her that lamictal every day knowing that it might be causing problems. I can give it to her if I know that we are reducing it. We'll see what happens. I just can't believe that those 16 days were a fluke- plus, so many people have had similar experiences with lamictal. Thanks for everything! > >Reply-To: ketogenic >To: ketogenic >Subject: Re: Speeding up the wean? >Date: Tue, 16 Dec 2003 03:14:17 -0000 > _________________________________________________________________ Get holiday tips for festive fun. http://special.msn.com/network/happyholidays.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Good to know I'm not the only mom out on a limb here.... Although I am sure that if this thing is a success (and I am determined that it will be), SOME PEOPLE will forget who was in it for the long haul and who was ready to jump ship.... = ) >From: hammett45@... >Reply-To: ketogenic >To: ketogenic >Subject: Re: Re: Speeding up the wean? >Date: Tue, 16 Dec 2003 10:48:45 EST > _________________________________________________________________ Shop online for kids’ toys by age group, price range, and toy category at MSN Shopping. No waiting for a clerk to help you! http://shopping.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 I wouldn't make both changes at once, could be too stressful for her body. Sit down, take a deep breath and go which whatever one your gut tells you to do first. Although if it was me, I think I would up ratio first, sort of like putting some backup in place before the wean michelle langansmom wrote: > OK, Langan just had what I think was a simple partial seizure- woke > up shaking and freaked out and could not be calmed. The shaking > would stop and then start again. If it was a simple partial, it > never generalized. It looked exactly like what she did last night, > except last night it generalized. The interesting thing is that it > happened EXACTLY 1 1/2 hours after her last lamictal dose. Her > other seizures since starting the diet have also been 1 1/2 to 2 > hours after a dose. My husband thinks I am crazy but I swear there > has to be something to this. We planned to increase the ratio for a > week and then start the weaning but I am tempted to do both starting > tomorrow. Langan's normal seizure pattern was once a week but now > they are coming so much more frequently. If it is the lamictal, > don't I need to get rid of it ASAP? I hate the thought of giving it > to her if it is causing these problems!! Any thoughts? > > , mom to Langan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 , After reading all your posts I would be doing the same thing. In fact, I did the same thing. In the first 3 months of the diet we often had to make more than one change at a time. There are times when logic tells you that things need to be adjusted in more than one area and you are not willing to wait around and adjust 1 thing at a time every 2 weeks and watch the condition deteriorate. After 6 months we were finally at a stable point where we could make changes 1 at a time. When we were weaning drugs it was rather a given that we would decrease the dose every 2 weeks. While we weaned we made adjustments in the diet (eliminated foods, adjusted ratio's etc.). If we had done changes 1 at a time every 1-2 weeks it would have taken 1-2 years to achieve what we achieved in 6 months, not to mention that our daughter would have deteriorated at some points during the year instead of making the gains she had made. I think you are being very wise. Rhonda That is what we are going to do, starting today. I went back and forth about changing two things at once but I really want her off the lamictal sooner rather than later, and at the same time I am concerned that her ketones are dipping so low in the morning. I think part of it may be that I am getting her to drink water at night but no food. She drinks so little of her allotment and has so much constipation. She gets thirsty in the night, so I keep water by the bed but I am thinking that may be what is dipping the ketones so low. I know they naturally dip, but this is a huge dip. And she is having seizures at the times when they register low so I hope upping the ratio will help. PLUS my husband is starting to hint that he wants to ditch the diet and go back to the AEDs and the sooner I get her off the AEDs the quicker he will realize that's not gonna happen until I am SURE this isn't going to work. Thanks for the advice! >From: hammett45@... >Reply-To: ketogenic >To: ketogenic >Subject: Re: Speeding up the wean? >Date: Mon, 15 Dec 2003 21:20:51 EST > _________________________________________________________________ Our best dial-up offer is back. Get MSN Dial-up Internet Service for 6 months @ $9.95/month now! http://join.msn.com/?page=dept/dialup Quote Link to comment Share on other sites More sharing options...
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