Guest guest Posted October 17, 2001 Report Share Posted October 17, 2001 RICHARD HILL wrote: 5) What else should we be checking apart from ketones. I read PH levels and glucose should be monitored as well, our team don't see the need. Just read what I've written, if anyone has managed to keep reading to the end, would love some help! Just one quick answer before I run to bed It is best to have urine stix that will measure ketones and blood at a minimum. Most stix also measure glucose but if you want to monitor glucose on diet, monitor blood glucose not urine. Some do, some don't. But the blood is an important one to watch for kidney stones. Also nice to specific gravity on stix because it will tell you how dehydrated he is Bye for now and welcome to the list , mom of (8) ketokid since 2/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2001 Report Share Posted October 17, 2001 Dear : Welcome!! From Hill-mother to in NZ I hope every one does long introductory messages, here goes! Like others in NZ we are finding our hospital is not that experienced in the diet, definitely need help, hopefully I can add my 10 cents worth when I know what I'm doing! will be five at the end of Nov, seizures started at three and a half, prior to this he was completely "normal", the cause of his disorder is unknown, diagnosis still uncertain. He has a mixed seizure disorder, previously labelled Lennox Gastaut, this was removed as he doesn't have the usual EEG pattern or tonic seizures, and his background activity is not slowed on the odd occasion he is not having seizures. A Canadian epileptologist that we took to in Wellington thinks he has Myoclonic Astatic Epilepsy of Early Childhood or 'Doose Syndrome', but this diagnosis is tentative as well. For those not familiar with this one, the prognosis can be as bleak as with LGS, but around 51% of kids 'grow out' of the disorder around age 7, most of this 'lucky' group, with no cognitive dysfunction when the seizures abate. The challenge is therefore obviously to try and keep him 'intact', free of damage from seizures, should he be a 'lucky one'. So far we don't think he's actually regressed, but he's not really gone forward either, not that he's had much chance to. Because he was quite advanced before the seizures started, he is still hanging in around 'age appropriate' in most areas. He is however ataxic, dysarthric (slow speech)and he has a mild intention tremor. The hope is of course, that this is drug or seizure related, or both. Most of the known 'nasties' (progressive, degenerative etc) have been ruled out, but his reaction to the diet makes us suspect he may have an as yet undiagnosed metabolic disorder. We had on low (but not excessively so) carbs the weekend prior to hospital admission to start the diet on the 3rd Sep( 6 weeks ago). He had dinner as usual on the Sun nite, skipped breakfast on the Mon, and by 12 o'clock (midday) he was in 16+ ketosis. His blood glucose level had already dropped to 2.7, and went as low as 1.7 the next day even after starting eating the food on the diet. His ketones remained high, despite eating, and 30-50 mls lemonade did not have much effect in bringing them down. More on his levels etc later, I'll try not to bombarb you all with too many questions! If anyone else experienced this, and wants to go into it further, or can help with possible causes, please let me know, I have most of his enzyme assay, spinal tap results etc. I have 5 'main' questions, any opinions greatly appreciated. 1) After a fairly dramatic gradual improvement, by day 5, was seizure free except for 1 or 2 lingering early morn (asleep) seizures. I see from previous posts this is not unusual. This I could have lived with, with the obvious hope that these too would gradually go. However had been 'borderline' toxic on meds prior to starting the diet.(Epilim 350mg am & pm, Lamictal 75mg am & 100mg pm, and diazepam 5mg am) As each day went on, he showed more and more signs, and by day 14 of the diet he was in status, the Drs' concensus being toxicity was the cause. Should I mention we feared this was going to happen, and asked for a reduction before starting the diet? Anyway, he finally came out of it 10 days ago, and we were back to where we were prior to the status, with 2 early morning (asleep) seizures only, huge improvement cognitively, but with a very unsteady gait, and even more slowed speech than usual. We did another lamictal decrease of 2.5 mgs at night on Oct 10th (previously went down to 50 mgs am & 75mgs pm on the 2nd Oct to try and get him out of status), and now we're in trouble again. Day 7 of the last decrease saw 7 bad nightime seizures yesterday, and 4 day time seizures as well. He is drooling again, I fear due to heaps of 'subclinical' seizures. We of course don't know if these are withdrawl seizures, or whether, as I know our neuro will say, he needs to go back up. I know epilim is not recommended on the diet, and don't know whether to reduce that instead, thereby reducing the actual concurrent lamictal dose that way, or to persevere wiht the lamictal reduction, and hope he doesn't tip back into status. By lowering the lamictal in his system through the epilim dose instead, do they still get lamictal withdrawl seizures to the same extent as changing the lamictal directly? Our gut feeling is that the lamictal has increased 's myoclonic seizures (and others as well, he had never experienced status before being on this drug) since Nov last year, which is why we're wanting to not go too slow in getting it out of his system, toxicity issue aside. Comments? ****Yes I agree toxitity-He sure is on a high amount of meds-my son experienced drooling, developmental delays and nocturnal seizures while on Lamictal-and the Epival (we call it that in Canada) caused liver damage. We did a quick drop of the Epival prior to the diet (the day we started) which caused 2 to 3 months of ketone bounce-dazed stait, and low PH-ACIDITY which we counteracted by adding Club Soda to his Keto Koolaid. I started putting about 10 mls in a jug of koolaid and ended up adjusting it as required. Our son would experience low activity-rages, red ears and cheeks and he smelled live nail polish remover. These were our clues on the PH problem. Now if you can get your hands on some Lab Stiks by Bayer or Multi Stiks you can watch his PH. It took 10 months of weaning Lamictal and tons of withdrawl seizures per day to become seizure free and to realize that the drugs had caused his developmental delays (along with the horrendous seizure activity) 2) Reading the diet book and watching the tape from Hopkins Hospital, they say if seizures break through while withdrawing a drug you should put it back up and try again later. Does this apply if you suspect the drug is actually the cause of the problems? This is where I disagree-so you will have to wait and see what the other list mates say. (I'm really anti-drug after experiencing horrible side effects and toxitity and developmental delays, and living without them for awhile-it is soooooooooooo wonderful) 3) They also say that if you had good control, and then lose it, that there is usually a cause, that the diet is not like drugs etc, you do not really get a 'honeymoon effect' where it works for a while, and then stops.'Sleuthing' will usually see control achieved again. I know it is relatively early days for us, and eating the food is going okay with , so we will perservere, have I still got cause to be optimistic, or are there lots out there, where the kids stop the seizures, and then they just return (drug problems aside) Here is where you are going to have to go with your heart-there are tons of Moms here who would much rather spend their time Sleuthing than continue the AED treatment which caused such problems and has such a slight chance of working. You have some huge drug weaning to do and this in itself is going to be slow and require intense patience and bravery by both you (I KNOW YOU ARE BRAVE) and your Keto Team. You have to only do one change every 2 weeks-if you panic and do too many changes you will have no idea which change helped or hurt your progress. The drug wean will play havoc if your is any-thing like most of the children on the list. 4) 's ketone levels when he wakes (between 7 and 8 am) are between 8 and 12, and then, whether he has had breakfast or not, they just 'drop' to between 2 and 4 by about 11am. They then go back to about 8 by 1 o'clock, and are always 16 again by 4 o'clock, and for the rest of the day. Any suggestions to stop that morning drop in ketone levels, as since this started a week ago, he has a seizure 2 hrs approx after this reading, I presume this is why we are seeing that one. Now here you may have to look at your schedule-example what time he eats breakfast-how much liquids he is taking in etc. May-be he needs an earlier breakfast? May-be he needs a late night snack? Their are alot of Moms who have struggled with this one including myself-we resolved this by supplementing with MCT Oil during the periods that his Ketone levels dropped. I am sure you will get tons of advice on this. Alot of the Moms do not like the MCT Oil so listen to their advice. 5) What else should we be checking apart from ketones. I read PH levels and glucose should be monitored as well, our team don't see the need. I would definately start testing PH-It was wonderful to not have to guess my son's acidity. This was a HUGE problem for us. We actually got him so ketoic that he started dropping from low blood sugar. Of course they thought it was a new seizure type and wanted to add a new drug until I talked them into doing some testing. Each child is so..........different. Some stop seizuring immediately-some take some serious detective work. You need your team to give this their all. This list is nothing short of a God Send-keep on asking-reading and they just might send you in the right direction and save you months of anquish-like they did for me. Just read what I've written, if anyone has managed to keep reading to the end, would love some help! Hill, stressed out mother to (7), (nearly 5), and (18 mths) Hugs to you all Diane (Dwayne), Jordan 10, 8 (seizure free 225 days) and Hanna 5 "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 October 17, 2001 Report Share Posted October 17, 2001 Wow, . I made it through your post and was impressed with the clear and detailed way you can express yourself about all of this. Welcome to the list, and I do believe you will contribute a great deal as time goes by. I dont have a lot of comments to make but here are my thoughts so far. His ketones remained high, despite eating, and 30-50 mls lemonade did not have much effect in bringing them down I dont know if high ketones are still a problem, or even if the 16 value is too high for . My only thought about ketones being consistently too high is to lower the ratio of his meals. You would do this if he was exhibiting symptoms of acidosis (flushed cheeks, red ears, panting, high ketones, low pH, vomiting) Acidosis is caused by ketones being too strong, because ketones are by natue acidic. Day 7 of the last decrease saw 7 bad nightime seizures yesterday, and 4 day time seizures as well. He is drooling again, I fear due to heaps of 'subclinical' seizures. We of course don't know if these are withdrawl seizures, or whether, as I know our neuro will say, he needs to go back up Reading the diet book and watching the tape from Hopkins Hospital, they say if seizures break through while withdrawing a drug you should put it back up and try again later. Does this apply if you suspect the drug is actually the cause of the problems? Neuros most often think the meds should be increased because, to them, more seizures mean that the drug MUST be needed. They rarely acknowledge withdrawal seizures, and you will have to follow your gut feelings on this. You will instinctively know if them weans are causing more sz's and if you are strong and patient, you will be able to give enough time to see if they decrease without upping the dose. You are right about the dilemma with lamictal and epilim. I cant comment on this as I have no experience with the two together, but there are many on the list who have endured this and I'm sure they'll have some guidance for you. What else should we be checking apart from ketones. I read PH levels and glucose should be monitored as well, our team don't see the need. We use the multistix with 8 tests on each one. I usually just check ketones, but always I'm alert for positives for blood (may be symptom of UTI or kidney stones), nitrites (indicator of UTI), and pH (one of the symptoms of acidosis in Hannah is low pH - ie:very acidic. Hope this helps a little . Keep asking lots of questions and you will succeed. Cheers (Hannah's mum, Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2001 Report Share Posted October 17, 2001 Wow. . .what a story. . .I see a lot of similarities to my 6 year-old daughter, . I don't know that I can comment on much but one thing did stand out: 2) Reading the diet book and watching the tape from > Hopkins Hospital, they say if seizures break through > while withdrawing a drug you should put it back up > and try again later. Does this apply if you suspect > the drug is actually the cause of the problems? I don't agree. We weaned Lamictal while on the diet. The neuro recommended that we wait until she was completely controlled. We just had one of those gut feelings that the drug was harming her -- and so we began to wean. The neuro had initially recommended one tablet per week for a six week wean. We knew that would be too fast, so we went down 1/2 tablet per week which took us a little over 3 months. We did have withdrawl seizures, as well as a replay of a lot of things that had happened to her as a result of Lamictal -- aggressiveness, inattentiveness, night terrors, night seizures. We still seem to be battling the night seizures -- but the rest (thank God) has subsided. There's lots of stories regarding weaning. .. . keep asking away and best of luck!--DeEtte ===== DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ " I know God would never give me more than I can handle. . .I just wish he didn't trust me so much. " -- Mother Theresa __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 , I have no experience with weaning meds on the diet but lots of other parents here do and I'm sure you'll receive lots of input. Have you tried flax oil? Some say it steadies ketones. Hoping you can get things straightened out soon. Hang in there..... and welcome to the list. Patti, mom to Katera, age 5, Keto Kid for one year on 10/10.... med free, seizure free since May. From Hill-mother to in NZ I hope every one does long introductory messages, here goes! Like others in NZ we are finding our hospital is not that experienced in the diet, definitely need help, hopefully I can add my 10 cents worth when I know what I'm doing! will be five at the end of Nov, seizures started at three and a half, prior to this he was completely "normal", the cause of his disorder is unknown, diagnosis still uncertain. He has a mixed seizure disorder, previously labelled Lennox Gastaut, this was removed as he doesn't have the usual EEG pattern or tonic seizures, and his background activity is not slowed on the odd occasion he is not having seizures. A Canadian epileptologist that we took to in Wellington thinks he has Myoclonic Astatic Epilepsy of Early Childhood or 'Doose Syndrome', but this diagnosis is tentative as well. For those not familiar with this one, the prognosis can be as bleak as with LGS, but around 51% of kids 'grow out' of the disorder around age 7, most of this 'lucky' group, with no cognitive dysfunction when the seizures abate. The challenge is therefore obviously to try and keep him 'intact', free of damage from seizures, should he be a 'lucky one'. So far we don't think he's actually regressed, but he's not really gone forward either, not that he's had much chance to. Because he was quite advanced before the seizures started, he is still hanging in around 'age appropriate' in most areas. He is however ataxic, dysarthric (slow speech)and he has a mild intention tremor. The hope is of course, that this is drug or seizure related, or both. Most of the known 'nasties' (progressive, degenerative etc) have been ruled out, but his reaction to the diet makes us suspect he may have an as yet undiagnosed metabolic disorder. We had on low (but not excessively so) carbs the weekend prior to hospital admission to start the diet on the 3rd Sep( 6 weeks ago). He had dinner as usual on the Sun nite, skipped breakfast on the Mon, and by 12 o'clock (midday) he was in 16+ ketosis. His blood glucose level had already dropped to 2.7, and went as low as 1.7 the next day even after starting eating the food on the diet. His ketones remained high, despite eating, and 30-50 mls lemonade did not have much effect in bringing them down. More on his levels etc later, I'll try not to bombarb you all with too many questions! If anyone else experienced this, and wants to go into it further, or can help with possible causes, please let me know, I have most of his enzyme assay, spinal tap results etc. I have 5 'main' questions, any opinions greatly appreciated. 1) After a fairly dramatic gradual improvement, by day 5, was seizure free except for 1 or 2 lingering early morn (asleep) seizures. I see from previous posts this is not unusual. This I could have lived with, with the obvious hope that these too would gradually go. However had been 'borderline' toxic on meds prior to starting the diet.(Epilim 350mg am & pm, Lamictal 75mg am & 100mg pm, and diazepam 5mg am) As each day went on, he showed more and more signs, and by day 14 of the diet he was in status, the Drs' concensus being toxicity was the cause. Should I mention we feared this was going to happen, and asked for a reduction before starting the diet? Anyway, he finally came out of it 10 days ago, and we were back to where we were prior to the status, with 2 early morning (asleep) seizures only, huge improvement cognitively, but with a very unsteady gait, and even more slowed speech than usual. We did another lamictal decrease of 2.5 mgs at night on Oct 10th (previously went down to 50 mgs am & 75mgs pm on the 2nd Oct to try and get him out of status), and now we're in trouble again. Day 7 of the last decrease saw 7 bad nightime seizures yesterday, and 4 day time seizures as well. He is drooling again, I fear due to heaps of 'subclinical' seizures. We of course don't know if these are withdrawl seizures, or whether, as I know our neuro will say, he needs to go back up. I know epilim is not recommended on the diet, and don't know whether to reduce that instead, thereby reducing the actual concurrent lamictal dose that way, or to persevere wiht the lamictal reduction, and hope he doesn't tip back into status. By lowering the lamictal in his system through the epilim dose instead, do they still get lamictal withdrawl seizures to the same extent as changing the lamictal directly? Our gut feeling is that the lamictal has increased 's myoclonic seizures (and others as well, he had never experienced status before being on this drug) since Nov last year, which is why we're wanting to not go too slow in getting it out of his system, toxicity issue aside. Comments? 2) Reading the diet book and watching the tape from Hopkins Hospital, they say if seizures break through while withdrawing a drug you should put it back up and try again later. Does this apply if you suspect the drug is actually the cause of the problems? 3) They also say that if you had good control, and then lose it, that there is usually a cause, that the diet is not like drugs etc, you do not really get a 'honeymoon effect' where it works for a while, and then stops.'Sleuthing' will usually see control achieved again. I know it is relatively early days for us, and eating the food is going okay with , so we will perservere, have I still got cause to be optimistic, or are there lots out there, where the kids stop the seizures, and then they just return (drug problems aside) 4) 's ketone levels when he wakes (between 7 and 8 am) are between 8 and 12, and then, whether he has had breakfast or not, they just 'drop' to between 2 and 4 by about 11am. They then go back to about 8 by 1 o'clock, and are always 16 again by 4 o'clock, and for the rest of the day. Any suggestions to stop that morning drop in ketone levels, as since this started a week ago, he has a seizure 2 hrs approx after this reading, I presume this is why we are seeing that one. 5) What else should we be checking apart from ketones. I read PH levels and glucose should be monitored as well, our team don't see the need. Just read what I've written, if anyone has managed to keep reading to the end, would love some help! Hill, stressed out mother to (7), (nearly 5), and (18 mths) "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 October 18, 2001 Report Share Posted October 18, 2001 Hi . I have been given your number by Louise in Auckland but I just wanted to give a quick response to your letter. Jack wasn't diagnosed with his Metabolic Disorder until he was 3 years and 2 months old so I know how you feel, not knowing what you're dealing with. I hope someone online has some answers in relation to the seizures is having. We started the diet at Starship the week after you and when Jack was ketotic by lunchtime the dietitians were amazed that it had happened twice in two weeks. I remember them saying that they had dropped 's ratio to 3.5:1 because his ketones were too high. Jack's ketones are exactly the same as s, around 4 or less in the morning, 8 by lunchtime and always 16 by around 3-4 in the afternoon. I am reluctant to give him any lemonade because they are so low in the morning. I had a thought the other night though, do you brush his teeth before he goes to bed? We do but were told that there is no carbohydrate in NZ toothpastes. Did you query this? For some reason, the dietitians (we have a local one but everything is done on 's advise) won't decrease the ratio and just keep adding calories, 100 last week and another 100 this week. He went from 12.4kg to 13kg in that time so I'm a little unsure the reason behind it. How are you finding Callum? I'm sure he will do everything to find out what condition has. Good luck and you can email me at any time on ssenior@.... Sue - mum to Jack 3 1/2 and Molly 18 months From Hill-mother to in NZ I hope every one does long introductory messages, here goes! Like others in NZ we are finding our hospital is not that experienced in the diet, definitely need help, hopefully I can add my 10 cents worth when I know what I'm doing! will be five at the end of Nov, seizures started at three and a half, prior to this he was completely "normal", the cause of his disorder is unknown, diagnosis still uncertain. He has a mixed seizure disorder, previously labelled Lennox Gastaut, this was removed as he doesn't have the usual EEG pattern or tonic seizures, and his background activity is not slowed on the odd occasion he is not having seizures. A Canadian epileptologist that we took to in Wellington thinks he has Myoclonic Astatic Epilepsy of Early Childhood or 'Doose Syndrome', but this diagnosis is tentative as well. For those not familiar with this one, the prognosis can be as bleak as with LGS, but around 51% of kids 'grow out' of the disorder around age 7, most of this 'lucky' group, with no cognitive dysfunction when the seizures abate. The challenge is therefore obviously to try and keep him 'intact', free of damage from seizures, should he be a 'lucky one'. So far we don't think he's actually regressed, but he's not really gone forward either, not that he's had much chance to. Because he was quite advanced before the seizures started, he is still hanging in around 'age appropriate' in most areas. He is however ataxic, dysarthric (slow speech)and he has a mild intention tremor. The hope is of course, that this is drug or seizure related, or both. Most of the known 'nasties' (progressive, degenerative etc) have been ruled out, but his reaction to the diet makes us suspect he may have an as yet undiagnosed metabolic disorder. We had on low (but not excessively so) carbs the weekend prior to hospital admission to start the diet on the 3rd Sep( 6 weeks ago). He had dinner as usual on the Sun nite, skipped breakfast on the Mon, and by 12 o'clock (midday) he was in 16+ ketosis. His blood glucose level had already dropped to 2.7, and went as low as 1.7 the next day even after starting eating the food on the diet. His ketones remained high, despite eating, and 30-50 mls lemonade did not have much effect in bringing them down. More on his levels etc later, I'll try not to bombarb you all with too many questions! If anyone else experienced this, and wants to go into it further, or can help with possible causes, please let me know, I have most of his enzyme assay, spinal tap results etc. I have 5 'main' questions, any opinions greatly appreciated. 1) After a fairly dramatic gradual improvement, by day 5, was seizure free except for 1 or 2 lingering early morn (asleep) seizures. I see from previous posts this is not unusual. This I could have lived with, with the obvious hope that these too would gradually go. However had been 'borderline' toxic on meds prior to starting the diet.(Epilim 350mg am & pm, Lamictal 75mg am & 100mg pm, and diazepam 5mg am) As each day went on, he showed more and more signs, and by day 14 of the diet he was in status, the Drs' concensus being toxicity was the cause. Should I mention we feared this was going to happen, and asked for a reduction before starting the diet? Anyway, he finally came out of it 10 days ago, and we were back to where we were prior to the status, with 2 early morning (asleep) seizures only, huge improvement cognitively, but with a very unsteady gait, and even more slowed speech than usual. We did another lamictal decrease of 2.5 mgs at night on Oct 10th (previously went down to 50 mgs am & 75mgs pm on the 2nd Oct to try and get him out of status), and now we're in trouble again. Day 7 of the last decrease saw 7 bad nightime seizures yesterday, and 4 day time seizures as well. He is drooling again, I fear due to heaps of 'subclinical' seizures. We of course don't know if these are withdrawl seizures, or whether, as I know our neuro will say, he needs to go back up. I know epilim is not recommended on the diet, and don't know whether to reduce that instead, thereby reducing the actual concurrent lamictal dose that way, or to persevere wiht the lamictal reduction, and hope he doesn't tip back into status. By lowering the lamictal in his system through the epilim dose instead, do they still get lamictal withdrawl seizures to the same extent as changing the lamictal directly? Our gut feeling is that the lamictal has increased 's myoclonic seizures (and others as well, he had never experienced status before being on this drug) since Nov last year, which is why we're wanting to not go too slow in getting it out of his system, toxicity issue aside. Comments? 2) Reading the diet book and watching the tape from Hopkins Hospital, they say if seizures break through while withdrawing a drug you should put it back up and try again later. Does this apply if you suspect the drug is actually the cause of the problems? 3) They also say that if you had good control, and then lose it, that there is usually a cause, that the diet is not like drugs etc, you do not really get a 'honeymoon effect' where it works for a while, and then stops.'Sleuthing' will usually see control achieved again. I know it is relatively early days for us, and eating the food is going okay with , so we will perservere, have I still got cause to be optimistic, or are there lots out there, where the kids stop the seizures, and then they just return (drug problems aside) 4) 's ketone levels when he wakes (between 7 and 8 am) are between 8 and 12, and then, whether he has had breakfast or not, they just 'drop' to between 2 and 4 by about 11am. They then go back to about 8 by 1 o'clock, and are always 16 again by 4 o'clock, and for the rest of the day. Any suggestions to stop that morning drop in ketone levels, as since this started a week ago, he has a seizure 2 hrs approx after this reading, I presume this is why we are seeing that one. 5) What else should we be checking apart from ketones. I read PH levels and glucose should be monitored as well, our team don't see the need. Just read what I've written, if anyone has managed to keep reading to the end, would love some help! Hill, stressed out mother to (7), (nearly 5), and (18 mths) "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 October 18, 2001 Report Share Posted October 18, 2001 Dear Sue, If I get you right the dietician has increased your calories to 200 per day more the the diet ratio. I don't like the sound of that and he is putting on weight fast. I am wondering how he is in himself and whether he is getting hungry between meals. Louise of NZ, Mother to Kian now an Angel. -----Original Message-----From: Trent & Sue Senior Sent: Thursday, 18 October 2001 20:15To: ketogenic Subject: Re: daniel Hi . I have been given your number by Louise in Auckland but I just wanted to give a quick response to your letter. Jack wasn't diagnosed with his Metabolic Disorder until he was 3 years and 2 months old so I know how you feel, not knowing what you're dealing with. I hope someone online has some answers in relation to the seizures is having. We started the diet at Starship the week after you and when Jack was ketotic by lunchtime the dietitians were amazed that it had happened twice in two weeks. I remember them saying that they had dropped 's ratio to 3.5:1 because his ketones were too high. Jack's ketones are exactly the same as s, around 4 or less in the morning, 8 by lunchtime and always 16 by around 3-4 in the afternoon. I am reluctant to give him any lemonade because they are so low in the morning. I had a thought the other night though, do you brush his teeth before he goes to bed? We do but were told that there is no carbohydrate in NZ toothpastes. Did you query this? For some reason, the dietitians (we have a local one but everything is done on 's advise) won't decrease the ratio and just keep adding calories, 100 last week and another 100 this week. He went from 12.4kg to 13kg in that time so I'm a little unsure the reason behind it. How are you finding Callum? I'm sure he will do everything to find out what condition has. Good luck and you can email me at any time on ssenior@.... Sue - mum to Jack 3 1/2 and Molly 18 months From Hill-mother to in NZ I hope every one does long introductory messages, here goes! Like others in NZ we are finding our hospital is not that experienced in the diet, definitely need help, hopefully I can add my 10 cents worth when I know what I'm doing! will be five at the end of Nov, seizures started at three and a half, prior to this he was completely "normal", the cause of his disorder is unknown, diagnosis still uncertain. He has a mixed seizure disorder, previously labelled Lennox Gastaut, this was removed as he doesn't have the usual EEG pattern or tonic seizures, and his background activity is not slowed on the odd occasion he is not having seizures. A Canadian epileptologist that we took to in Wellington thinks he has Myoclonic Astatic Epilepsy of Early Childhood or 'Doose Syndrome', but this diagnosis is tentative as well. For those not familiar with this one, the prognosis can be as bleak as with LGS, but around 51% of kids 'grow out' of the disorder around age 7, most of this 'lucky' group, with no cognitive dysfunction when the seizures abate. The challenge is therefore obviously to try and keep him 'intact', free of damage from seizures, should he be a 'lucky one'. So far we don't think he's actually regressed, but he's not really gone forward either, not that he's had much chance to. Because he was quite advanced before the seizures started, he is still hanging in around 'age appropriate' in most areas. He is however ataxic, dysarthric (slow speech)and he has a mild intention tremor. The hope is of course, that this is drug or seizure related, or both. Most of the known 'nasties' (progressive, degenerative etc) have been ruled out, but his reaction to the diet makes us suspect he may have an as yet undiagnosed metabolic disorder. We had on low (but not excessively so) carbs the weekend prior to hospital admission to start the diet on the 3rd Sep( 6 weeks ago). He had dinner as usual on the Sun nite, skipped breakfast on the Mon, and by 12 o'clock (midday) he was in 16+ ketosis. His blood glucose level had already dropped to 2.7, and went as low as 1.7 the next day even after starting eating the food on the diet. His ketones remained high, despite eating, and 30-50 mls lemonade did not have much effect in bringing them down. More on his levels etc later, I'll try not to bombarb you all with too many questions! If anyone else experienced this, and wants to go into it further, or can help with possible causes, please let me know, I have most of his enzyme assay, spinal tap results etc. I have 5 'main' questions, any opinions greatly appreciated. 1) After a fairly dramatic gradual improvement, by day 5, was seizure free except for 1 or 2 lingering early morn (asleep) seizures. I see from previous posts this is not unusual. This I could have lived with, with the obvious hope that these too would gradually go. However had been 'borderline' toxic on meds prior to starting the diet.(Epilim 350mg am & pm, Lamictal 75mg am & 100mg pm, and diazepam 5mg am) As each day went on, he showed more and more signs, and by day 14 of the diet he was in status, the Drs' concensus being toxicity was the cause. Should I mention we feared this was going to happen, and asked for a reduction before starting the diet? Anyway, he finally came out of it 10 days ago, and we were back to where we were prior to the status, with 2 early morning (asleep) seizures only, huge improvement cognitively, but with a very unsteady gait, and even more slowed speech than usual. We did another lamictal decrease of 2.5 mgs at night on Oct 10th (previously went down to 50 mgs am & 75mgs pm on the 2nd Oct to try and get him out of status), and now we're in trouble again. Day 7 of the last decrease saw 7 bad nightime seizures yesterday, and 4 day time seizures as well. He is drooling again, I fear due to heaps of 'subclinical' seizures. We of course don't know if these are withdrawl seizures, or whether, as I know our neuro will say, he needs to go back up. I know epilim is not recommended on the diet, and don't know whether to reduce that instead, thereby reducing the actual concurrent lamictal dose that way, or to persevere wiht the lamictal reduction, and hope he doesn't tip back into status. By lowering the lamictal in his system through the epilim dose instead, do they still get lamictal withdrawl seizures to the same extent as changing the lamictal directly? Our gut feeling is that the lamictal has increased 's myoclonic seizures (and others as well, he had never experienced status before being on this drug) since Nov last year, which is why we're wanting to not go too slow in getting it out of his system, toxicity issue aside. Comments? 2) Reading the diet book and watching the tape from Hopkins Hospital, they say if seizures break through while withdrawing a drug you should put it back up and try again later. Does this apply if you suspect the drug is actually the cause of the problems? 3) They also say that if you had good control, and then lose it, that there is usually a cause, that the diet is not like drugs etc, you do not really get a 'honeymoon effect' where it works for a while, and then stops.'Sleuthing' will usually see control achieved again. I know it is relatively early days for us, and eating the food is going okay with , so we will perservere, have I still got cause to be optimistic, or are there lots out there, where the kids stop the seizures, and then they just return (drug problems aside) 4) 's ketone levels when he wakes (between 7 and 8 am) are between 8 and 12, and then, whether he has had breakfast or not, they just 'drop' to between 2 and 4 by about 11am. They then go back to about 8 by 1 o'clock, and are always 16 again by 4 o'clock, and for the rest of the day. Any suggestions to stop that morning drop in ketone levels, as since this started a week ago, he has a seizure 2 hrs approx after this reading, I presume this is why we are seeing that one. 5) What else should we be checking apart from ketones. I read PH levels and glucose should be monitored as well, our team don't see the need. Just read what I've written, if anyone has managed to keep reading to the end, would love some help! Hill, stressed out mother to (7), (nearly 5), and (18 mths) "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 October 18, 2001 Report Share Posted October 18, 2001 Dear Sue and Yeeeeeaaaaahhh!!!! You found your way onto the list. So good to have you on. I loved you novel of an intro, you don't mess about do you girl. On a serious note a late night snack before bed might bring his keytones up in the morning. Have the dieticians suggested that yet? Louise of New Zealand, Mother to Kian now an Angel. From Hill-mother to in NZ I hope every one does long introductory messages, here goes! Like others in NZ we are finding our hospital is not that experienced in the diet, definitely need help, hopefully I can add my 10 cents worth when I know what I'm doing! will be five at the end of Nov, seizures started at three and a half, prior to this he was completely "normal", the cause of his disorder is unknown, diagnosis still uncertain. He has a mixed seizure disorder, previously labelled Lennox Gastaut, this was removed as he doesn't have the usual EEG pattern or tonic seizures, and his background activity is not slowed on the odd occasion he is not having seizures. A Canadian epileptologist that we took to in Wellington thinks he has Myoclonic Astatic Epilepsy of Early Childhood or 'Doose Syndrome', but this diagnosis is tentative as well. For those not familiar with this one, the prognosis can be as bleak as with LGS, but around 51% of kids 'grow out' of the disorder around age 7, most of this 'lucky' group, with no cognitive dysfunction when the seizures abate. The challenge is therefore obviously to try and keep him 'intact', free of damage from seizures, should he be a 'lucky one'. So far we don't think he's actually regressed, but he's not really gone forward either, not that he's had much chance to. Because he was quite advanced before the seizures started, he is still hanging in around 'age appropriate' in most areas. He is however ataxic, dysarthric (slow speech)and he has a mild intention tremor. The hope is of course, that this is drug or seizure related, or both. Most of the known 'nasties' (progressive, degenerative etc) have been ruled out, but his reaction to the diet makes us suspect he may have an as yet undiagnosed metabolic disorder. We had on low (but not excessively so) carbs the weekend prior to hospital admission to start the diet on the 3rd Sep( 6 weeks ago). He had dinner as usual on the Sun nite, skipped breakfast on the Mon, and by 12 o'clock (midday) he was in 16+ ketosis. His blood glucose level had already dropped to 2.7, and went as low as 1.7 the next day even after starting eating the food on the diet. His ketones remained high, despite eating, and 30-50 mls lemonade did not have much effect in bringing them down. More on his levels etc later, I'll try not to bombarb you all with too many questions! If anyone else experienced this, and wants to go into it further, or can help with possible causes, please let me know, I have most of his enzyme assay, spinal tap results etc. I have 5 'main' questions, any opinions greatly appreciated. 1) After a fairly dramatic gradual improvement, by day 5, was seizure free except for 1 or 2 lingering early morn (asleep) seizures. I see from previous posts this is not unusual. This I could have lived with, with the obvious hope that these too would gradually go. However had been 'borderline' toxic on meds prior to starting the diet.(Epilim 350mg am & pm, Lamictal 75mg am & 100mg pm, and diazepam 5mg am) As each day went on, he showed more and more signs, and by day 14 of the diet he was in status, the Drs' concensus being toxicity was the cause. Should I mention we feared this was going to happen, and asked for a reduction before starting the diet? Anyway, he finally came out of it 10 days ago, and we were back to where we were prior to the status, with 2 early morning (asleep) seizures only, huge improvement cognitively, but with a very unsteady gait, and even more slowed speech than usual. We did another lamictal decrease of 2.5 mgs at night on Oct 10th (previously went down to 50 mgs am & 75mgs pm on the 2nd Oct to try and get him out of status), and now we're in trouble again. Day 7 of the last decrease saw 7 bad nightime seizures yesterday, and 4 day time seizures as well. He is drooling again, I fear due to heaps of 'subclinical' seizures. We of course don't know if these are withdrawl seizures, or whether, as I know our neuro will say, he needs to go back up. I know epilim is not recommended on the diet, and don't know whether to reduce that instead, thereby reducing the actual concurrent lamictal dose that way, or to persevere wiht the lamictal reduction, and hope he doesn't tip back into status. By lowering the lamictal in his system through the epilim dose instead, do they still get lamictal withdrawl seizures to the same extent as changing the lamictal directly? Our gut feeling is that the lamictal has increased 's myoclonic seizures (and others as well, he had never experienced status before being on this drug) since Nov last year, which is why we're wanting to not go too slow in getting it out of his system, toxicity issue aside. Comments? 2) Reading the diet book and watching the tape from Hopkins Hospital, they say if seizures break through while withdrawing a drug you should put it back up and try again later. Does this apply if you suspect the drug is actually the cause of the problems? 3) They also say that if you had good control, and then lose it, that there is usually a cause, that the diet is not like drugs etc, you do not really get a 'honeymoon effect' where it works for a while, and then stops.'Sleuthing' will usually see control achieved again. I know it is relatively early days for us, and eating the food is going okay with , so we will perservere, have I still got cause to be optimistic, or are there lots out there, where the kids stop the seizures, and then they just return (drug problems aside) 4) 's ketone levels when he wakes (between 7 and 8 am) are between 8 and 12, and then, whether he has had breakfast or not, they just 'drop' to between 2 and 4 by about 11am. They then go back to about 8 by 1 o'clock, and are always 16 again by 4 o'clock, and for the rest of the day. Any suggestions to stop that morning drop in ketone levels, as since this started a week ago, he has a seizure 2 hrs approx after this reading, I presume this is why we are seeing that one. 5) What else should we be checking apart from ketones. I read PH levels and glucose should be monitored as well, our team don't see the need. Just read what I've written, if anyone has managed to keep reading to the end, would love some help! Hill, stressed out mother to (7), (nearly 5), and (18 mths) "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 October 18, 2001 Report Share Posted October 18, 2001 My daughter's seizures started at birth. She has microcephaly, has been on many medications. Her seizures have been mostly staring to one side, stiffening out, then a cry at the end. Our neuro tells me that they are secondarily generalized. I don't know. Her EEG is " very abnormal " " nearly all the time " . She is 25 years old. As far as I know she is the first adult in Canada to try the diet. > RICHARD HILL wrote: > We had on low (but not excessively so) carbs the weekend prior > to hospital admission to start the diet on the 3rd Sep( 6 weeks ago). > He had dinner as usual on the Sun nite, skipped breakfast on the Mon, > and by 12 o'clock (midday) he was in 16+ ketosis. His blood glucose > level had already dropped to 2.7, and went as low as 1.7 the next day > even after starting eating the food on the diet. His ketones remained > high, despite eating, and 30-50 mls lemonade did not have much effect > in bringing them down We had similar experience with ketones and blood glucose levels. Of course that is now nearly 1 year ago, so I am a bit fuzzy on the details. We saw immediate large changes in behaviour at the beginning of the diet; much more awareness, signs of medication toxicity were absent. With each day, there were new surprizes. > > I have 5 'main' questions, any opinions greatly appreciated. > > 1) After a fairly dramatic gradual improvement, by day 5, was > seizure free except for 1 or 2 lingering early morn (asleep) seizures. > I see from previous posts this is not unusual. This I could have lived > with, with the obvious hope that these too would gradually go. However > had been 'borderline' toxic on meds prior to starting the > diet.(Epilim 350mg am & pm, Lamictal 75mg am & 100mg pm, and diazepam > 5mg am) As each day went on, he showed more and more signs, and by day > 14 of the diet he was in status, the Drs' concensus being toxicity was > the cause. Should I mention we feared this was going to happen, and > asked for a reduction before starting the diet? Anyway, he finally > came out of it 10 days ago, and we were back to where we were prior to > the status, with 2 early morning (asleep) seizures only, huge > improvement cognitively, but with a very unsteady gait, and even more > slowed speech than usual. We did another lamictal decrease of 2.5 mgs > at night on Oct 10th (previously went down to 50 mgs am & 75mgs pm on > the 2nd Oct to try and get him out of status), and now we're in > trouble again. Day 7 of the last decrease saw 7 bad nightime seizures > yesterday, and 4 day time seizures as well. He is drooling again, I > fear due to heaps of 'subclinical' seizures. We of course don't know > if these are withdrawl seizures, or whether, as I know our neuro will > say, he needs to go back up. I know epilim is not recommended on the > diet, and don't know whether to reduce that instead, thereby reducing > the actual concurrent lamictal dose that way, or to persevere wiht the > lamictal reduction, and hope he doesn't tip back into status. By > lowering the lamictal in his system through the epilim dose instead, > do they still get lamictal withdrawl seizures to the same extent as > changing the lamictal directly? Our gut feeling is that the lamictal > has increased 's myoclonic seizures (and others as well, he had > never experienced status before being on this drug) since Nov last > year, which is why we're wanting to not go too slow in getting it out > of his system, toxicity issue aside. Comments? We started the diet on tegretol. I also wanted to wean off that at the beginning of the diet. The diet actually indicated to me that she had been toxic on the meds; very sleepy during the day and her eyes would dart back and forth. This went away on the diet. I was convinced to wait a bit before weaning. The doctor wanted one year, we comprimised on 3 months. There were so many changes in behaviour on the diet, one of which was the type of seizures. I can't really label them, but she was having jerks, tremors, looking right, then left. We were having to " describe " new seizure types nearly every day. However, she was down to basically a couple of seizures in the morning, one at about 10:30 am and one about 2:30 pm. I thought that they were caused by the tegretol. Now I am not so sure. They might be a result of ketone or fluid levels or a combination. Seizures were far fewer, much shorter on the diet. The recovery was immediate, like nothing had happened. I really don't know about meds with the diet. I do think that they can cause seizures and that there is a strong possibility that they could interfere with the diet. The other difficulty is that the diet is a major change to the body and there are long term changes due to the diet. It is difficult to determine how the diet is working. As the body changes to accommodate the diet, we have to make changes in the diet for it to work well. > > 2) Reading the diet book and watching the tape from Hopkins Hospital, > they say if seizures break through while withdrawing a drug you should > put it back up and try again later. Does this apply if you suspect the > drug is actually the cause of the problems? I don't know about " break through " seizures. To me this means, no seizures then one seizure happens. However, I do agree with their suggestion. When we tried to wean the tegretol, we followed the recommended withdrawal regimen and got into serious trouble. I don't know if it was " status " or " clusters " , but just after stopping the medication, she started having seizures one after the other about 3 minutes apart starting at midnight. She had never had seizures so close together, usually at least one hour apart. We wound up in emergency and restarted the tegretol. After 2 or 3 weeks things settled down. The initial reduction was over one month, 25% each time. I worked out my own schedule after doing some research and reviewing what had happened. There were studies that showed serious difficulties in reducing tegretol; British publications about 10 years ago. I reduced on a logarithmic scale; 50% of the previous level every one to two weeks. It took about 3 months. Even then we probably got some extra seizures, but nothing like the previous time. > > 3) They also say that if you had good control, and then lose it, that > there is usually a cause, that the diet is not like drugs etc, you do > not really get a 'honeymoon effect' where it works for a while, and > then stops.'Sleuthing' will usually see control achieved again. I know > it is relatively early days for us, and eating the food is going okay > with , so we will perservere, have I still got cause to be > optimistic, or are there lots out there, where the kids stop the > seizures, and then they just return (drug problems aside) For us every day is a new day. Changes have to be gradual and ideally only one thing at a time. We are fine tuning after one year. We still have seizures, but much less than before the diet and behaviours are much better and we are off drugs. > > 4) 's ketone levels when he wakes (between 7 and 8 am) are > between 8 and 12, and then, whether he has had breakfast or not, they > just 'drop' to between 2 and 4 by about 11am. They then go back to > about 8 by 1 o'clock, and are always 16 again by 4 o'clock, and for > the rest of the day. Any suggestions to stop that morning drop in > ketone levels, as since this started a week ago, he has a seizure 2 > hrs approx after this reading, I presume this is why we are seeing > that one. We are still working on this too. > > 5) What else should we be checking apart from ketones. I read PH > levels and glucose should be monitored as well, our team don't see the > need. > I am not even too concerned about ketone levels at present. We have been on a bit of a holiday as we had too much weight loss and gained a few pounds over the last couple of months. Now we are fine tuning calories and will fine tune ketones later. There are now blood ketone testers available and I am looking into borrowing one from the diabetes department as we have trouble getting high blood ketones when urine ketones are high. I wonder if this is why adults don't have as much success on the diet. We get extensive blood tests every 2 to 3 months at the hospital, so I am not too concerned about home testing. I have read about testing glucose, but we had the same results as you with the initial fasting drop, then back up again. Whenever we did test, they were always exactly the same. > Just read what I've written, if anyone has managed to keep reading to > the end, would love some help! > > Hill, stressed out mother to (7), (nearly 5), and > (18 mths) Get used to the stress. Taking pills is lot easier than the diet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 Dear Louise, Yes Jack was getting hungry between meals but personally I think it is due to habit, he used to eat every half hour before starting the diet. His weight before we went to Auckland was 13.7kg and when we left he was 12.4kg. After the vomiting bug he went back to 12.4kg and the last two weeks he went up to 12.8 and then 13kg. They said at the start that if his ketones remained high they would bring his ratio down, but instead they have added calories (he started out on 980 calories per day and is now on 1176). His meals are quite big but he still asks for each meal, habit I'm sure. We queried about adding a snack, but that was passed over for what reason I'm not sure either. They think that his ketones will go down with the added calories, but so far they are still exactly the same. Next week I think they will have to do something different. Here's hoping! Sue From Hill-mother to in NZ I hope every one does long introductory messages, here goes! Like others in NZ we are finding our hospital is not that experienced in the diet, definitely need help, hopefully I can add my 10 cents worth when I know what I'm doing! will be five at the end of Nov, seizures started at three and a half, prior to this he was completely "normal", the cause of his disorder is unknown, diagnosis still uncertain. He has a mixed seizure disorder, previously labelled Lennox Gastaut, this was removed as he doesn't have the usual EEG pattern or tonic seizures, and his background activity is not slowed on the odd occasion he is not having seizures. A Canadian epileptologist that we took to in Wellington thinks he has Myoclonic Astatic Epilepsy of Early Childhood or 'Doose Syndrome', but this diagnosis is tentative as well. For those not familiar with this one, the prognosis can be as bleak as with LGS, but around 51% of kids 'grow out' of the disorder around age 7, most of this 'lucky' group, with no cognitive dysfunction when the seizures abate. The challenge is therefore obviously to try and keep him 'intact', free of damage from seizures, should he be a 'lucky one'. So far we don't think he's actually regressed, but he's not really gone forward either, not that he's had much chance to. Because he was quite advanced before the seizures started, he is still hanging in around 'age appropriate' in most areas. He is however ataxic, dysarthric (slow speech)and he has a mild intention tremor. The hope is of course, that this is drug or seizure related, or both. Most of the known 'nasties' (progressive, degenerative etc) have been ruled out, but his reaction to the diet makes us suspect he may have an as yet undiagnosed metabolic disorder. We had on low (but not excessively so) carbs the weekend prior to hospital admission to start the diet on the 3rd Sep( 6 weeks ago). He had dinner as usual on the Sun nite, skipped breakfast on the Mon, and by 12 o'clock (midday) he was in 16+ ketosis. His blood glucose level had already dropped to 2.7, and went as low as 1.7 the next day even after starting eating the food on the diet. His ketones remained high, despite eating, and 30-50 mls lemonade did not have much effect in bringing them down. More on his levels etc later, I'll try not to bombarb you all with too many questions! If anyone else experienced this, and wants to go into it further, or can help with possible causes, please let me know, I have most of his enzyme assay, spinal tap results etc. I have 5 'main' questions, any opinions greatly appreciated. 1) After a fairly dramatic gradual improvement, by day 5, was seizure free except for 1 or 2 lingering early morn (asleep) seizures. I see from previous posts this is not unusual. This I could have lived with, with the obvious hope that these too would gradually go. However had been 'borderline' toxic on meds prior to starting the diet.(Epilim 350mg am & pm, Lamictal 75mg am & 100mg pm, and diazepam 5mg am) As each day went on, he showed more and more signs, and by day 14 of the diet he was in status, the Drs' concensus being toxicity was the cause. Should I mention we feared this was going to happen, and asked for a reduction before starting the diet? Anyway, he finally came out of it 10 days ago, and we were back to where we were prior to the status, with 2 early morning (asleep) seizures only, huge improvement cognitively, but with a very unsteady gait, and even more slowed speech than usual. We did another lamictal decrease of 2.5 mgs at night on Oct 10th (previously went down to 50 mgs am & 75mgs pm on the 2nd Oct to try and get him out of status), and now we're in trouble again. Day 7 of the last decrease saw 7 bad nightime seizures yesterday, and 4 day time seizures as well. He is drooling again, I fear due to heaps of 'subclinical' seizures. We of course don't know if these are withdrawl seizures, or whether, as I know our neuro will say, he needs to go back up. I know epilim is not recommended on the diet, and don't know whether to reduce that instead, thereby reducing the actual concurrent lamictal dose that way, or to persevere wiht the lamictal reduction, and hope he doesn't tip back into status. By lowering the lamictal in his system through the epilim dose instead, do they still get lamictal withdrawl seizures to the same extent as changing the lamictal directly? Our gut feeling is that the lamictal has increased 's myoclonic seizures (and others as well, he had never experienced status before being on this drug) since Nov last year, which is why we're wanting to not go too slow in getting it out of his system, toxicity issue aside. Comments? 2) Reading the diet book and watching the tape from Hopkins Hospital, they say if seizures break through while withdrawing a drug you should put it back up and try again later. Does this apply if you suspect the drug is actually the cause of the problems? 3) They also say that if you had good control, and then lose it, that there is usually a cause, that the diet is not like drugs etc, you do not really get a 'honeymoon effect' where it works for a while, and then stops.'Sleuthing' will usually see control achieved again. I know it is relatively early days for us, and eating the food is going okay with , so we will perservere, have I still got cause to be optimistic, or are there lots out there, where the kids stop the seizures, and then they just return (drug problems aside) 4) 's ketone levels when he wakes (between 7 and 8 am) are between 8 and 12, and then, whether he has had breakfast or not, they just 'drop' to between 2 and 4 by about 11am. They then go back to about 8 by 1 o'clock, and are always 16 again by 4 o'clock, and for the rest of the day. Any suggestions to stop that morning drop in ketone levels, as since this started a week ago, he has a seizure 2 hrs approx after this reading, I presume this is why we are seeing that one. 5) What else should we be checking apart from ketones. I read PH levels and glucose should be monitored as well, our team don't see the need. Just read what I've written, if anyone has managed to keep reading to the end, would love some help! Hill, stressed out mother to (7), (nearly 5), and (18 mths) "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...
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