Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 I called Kathy and she emailed me back. She also talked to Dr. Holder. Their position is that they have seen that with some kids blood ketone readings seem to elevate during a seizure, although she admitted they have no idea why. They say that the key is consistently high ketones instead of the fluctuations, and that the changed ratio and the medicine reductions often cause fluctuations for 7-10 days and sometimes even longer. Soooo the basic message was to hang in there and let the changes kick in- which means it'll be a while b/c we have 3 more weeks of lamictal reduction even on this new schedule. I wonder if this is why so many parents report problems with the diet and drugs mixing? The fluctuating ketones? Who knows, right.... They also mentioned that we might try, when we sense a seizure brewing, cutting the next meal in half. I am sure that wouldn't be too popular with Langan but if it works we'll try anything! It is a classic chicken or egg question- I don't know if the lack of sleep brings on the seizures or if the lack of sleep is an indicator that a seizure is brewing. I tend to think the latter, just b/c she gets soooooo manic, but I just don't know. We checked ketones this evening and they are still registering " high " . We'll just take one day at a time, I guess.... Thanks for the support. I really appreciate it! Re: /high ketones Oh no, .....sorry to hear about the seizure. It is a mystery that it came at 6+ readings. Just when we think we are starting to figure something out, they go and throw a wrench in our plans, don't they? I would definitely say that like a drug, too much ketosis can cause seizures. I know several on here strongly feel that is the case for their children. I'm not sure if they have blood ketone readings to correlate to, but maybe someone else will jump in who has more knowledge about that. Do you think it is the erratic sleep (and lack of) that causes the seizures the next day? What did Dr. H say about the Lamictal and the possibility of withdrawal seizures? I know the jury is still out on that for a lot of neuros (you've had conflicting reports yourself, right?) Maybe Langan does need that snail's pace wean. Hoping Dr. H will have some words of wisdom and encouragment for you. Did you call Theresa or Kathy (dietitians)? They may have insight on the high ketone - seizures correlation. Just keep remembering that every child is SOOOO different....Langan's lucky number for seizure control may lie somewhere in between the range. Take care, keep us posted.... Glenna > Langan started with a new keto team last week. On Friday, they cut > her carbs and increased her proteins and changed her ratio to 4:1. > They also wrote prescriptions for us to do blood ketone checks. We > got the test strips last night so this morning we started testing. I > tested her early, when she is usually showing lowest with urine. > She didn't smell like ketones and registered low- 3.9. A few hours > later, she started smelling like ketones so we tested again- 4.8. > She went to sleep a bit later and had a seizure and we tested during > the seizure- HIGH- over 6.0!!!! What is going on? Langan's > seizures are usually this time of morning or in the middle of the > night, when we THOUGHT (based on urine tests) that ketones were > low. Is it possible to have seizures at too low AND too high?? > Does this mean the diet is not going to work for her, if she has > seizures when registering high? She also slept only 4 hours last > night and woke up at 3:30 PLAYING for the rest of the night and then > didn't go back to sleep until 10:30 this morning, having her seizure > at 11:15am. This has been a pattern with her- late night " manic " > activity and then a seizure during her nap the next day. Her sleep > had gotten so much better. Now I am feeling a bit discouraged.... > > We are also still weaning her lamictal- we last lowered last > Thursday but have not seen any seizure activity since last Wednesday > (except for some shivering incidents in her sleep). Could that be > the culprit?? > > Help!! > > , mom to Langan, 19 months old and keto kid since 11/03 " 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 March 16, 2004 Report Share Posted March 16, 2004 I called Kathy and she emailed me back. She also talked to Dr. Holder. Their position is that they have seen that with some kids blood ketone readings seem to elevate during a seizure, although she admitted they have no idea why. They say that the key is consistently high ketones instead of the fluctuations, and that the changed ratio and the medicine reductions often cause fluctuations for 7-10 days and sometimes even longer. Soooo the basic message was to hang in there and let the changes kick in- which means it'll be a while b/c we have 3 more weeks of lamictal reduction even on this new schedule. I wonder if this is why so many parents report problems with the diet and drugs mixing? The fluctuating ketones? Who knows, right.... They also mentioned that we might try, when we sense a seizure brewing, cutting the next meal in half. I am sure that wouldn't be too popular with Langan but if it works we'll try anything! It is a classic chicken or egg question- I don't know if the lack of sleep brings on the seizures or if the lack of sleep is an indicator that a seizure is brewing. I tend to think the latter, just b/c she gets soooooo manic, but I just don't know. We checked ketones this evening and they are still registering " high " . We'll just take one day at a time, I guess.... Thanks for the support. I really appreciate it! Re: /high ketones Oh no, .....sorry to hear about the seizure. It is a mystery that it came at 6+ readings. Just when we think we are starting to figure something out, they go and throw a wrench in our plans, don't they? I would definitely say that like a drug, too much ketosis can cause seizures. I know several on here strongly feel that is the case for their children. I'm not sure if they have blood ketone readings to correlate to, but maybe someone else will jump in who has more knowledge about that. Do you think it is the erratic sleep (and lack of) that causes the seizures the next day? What did Dr. H say about the Lamictal and the possibility of withdrawal seizures? I know the jury is still out on that for a lot of neuros (you've had conflicting reports yourself, right?) Maybe Langan does need that snail's pace wean. Hoping Dr. H will have some words of wisdom and encouragment for you. Did you call Theresa or Kathy (dietitians)? They may have insight on the high ketone - seizures correlation. Just keep remembering that every child is SOOOO different....Langan's lucky number for seizure control may lie somewhere in between the range. Take care, keep us posted.... Glenna > Langan started with a new keto team last week. On Friday, they cut > her carbs and increased her proteins and changed her ratio to 4:1. > They also wrote prescriptions for us to do blood ketone checks. We > got the test strips last night so this morning we started testing. I > tested her early, when she is usually showing lowest with urine. > She didn't smell like ketones and registered low- 3.9. A few hours > later, she started smelling like ketones so we tested again- 4.8. > She went to sleep a bit later and had a seizure and we tested during > the seizure- HIGH- over 6.0!!!! What is going on? Langan's > seizures are usually this time of morning or in the middle of the > night, when we THOUGHT (based on urine tests) that ketones were > low. Is it possible to have seizures at too low AND too high?? > Does this mean the diet is not going to work for her, if she has > seizures when registering high? She also slept only 4 hours last > night and woke up at 3:30 PLAYING for the rest of the night and then > didn't go back to sleep until 10:30 this morning, having her seizure > at 11:15am. This has been a pattern with her- late night " manic " > activity and then a seizure during her nap the next day. Her sleep > had gotten so much better. Now I am feeling a bit discouraged.... > > We are also still weaning her lamictal- we last lowered last > Thursday but have not seen any seizure activity since last Wednesday > (except for some shivering incidents in her sleep). Could that be > the culprit?? > > Help!! > > , mom to Langan, 19 months old and keto kid since 11/03 " 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 March 16, 2004 Report Share Posted March 16, 2004 Hi , below in **** ----- Original Message ----- > I called Kathy and she emailed me back. She also talked to Dr. Holder. Their position is that they have seen that with some kids blood ketone readings seem to elevate during a seizure, although she admitted they have no idea why. **One theory on this is that during a seizure, glucose uptake to the brain is rapidly elevated, so blood glucose levels drop, allowing ketone levels to rise. But......another school of thought says that a seizure brings about a stress response - ie - glucose levels increased, ketones therefore drop. Take your pick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Hi , below in **** ----- Original Message ----- > I called Kathy and she emailed me back. She also talked to Dr. Holder. Their position is that they have seen that with some kids blood ketone readings seem to elevate during a seizure, although she admitted they have no idea why. **One theory on this is that during a seizure, glucose uptake to the brain is rapidly elevated, so blood glucose levels drop, allowing ketone levels to rise. But......another school of thought says that a seizure brings about a stress response - ie - glucose levels increased, ketones therefore drop. Take your pick Quote Link to comment Share on other sites More sharing options...
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