Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Hi Saro What are Rohan's calories and weight? Faye sanaljay wrote: > Hi Listmates, > I just thought I'd give an update on my son Rohan. > He's 12 yrs old and been free of drugs for 5 months. > The last two Aeds were phenobarbitone and depakote. > At the start of diet (Feb '00) inspite of too many cals > etc. he was free of sz for a month. > Then we started weaning pheno and he had a secondary > generalized sz the day after we finished. Next we had > a difficult time weaning dep with several sleep sz on > certain days after reducing the med. Since becoming > drug-free he started daytime sz again but concentration, > mood etc. improved and the no: of sz/month was also > marginally better. > However last month he had more sz than when on AEds > (mostly in the night). This month we got rid of night sz > by stopping vit E (given at night) and had a couple of fairly > good days. Then last Tuesday he forgot to take his cream > and oil at school, we continued with 2.1:1 ratio as normal > for dinner, and the ketones went high and he had 4 night sz. > Since then he has been having night sz ( ketones at night > 6-8 and mornings 0.5). For the last 4 days he has been > v.daydreamy/distracted and can't remember things and also > angry at times - just like when he was on high doses of drugs!! > I just don't know what's happening - HAS ANYONE SEEN > SOMETHING LIKE THIS ?? Could it be the night sz are > wiping him out? or is it a passing phase and some AEDs > are coming out of his system now after so many months? > Or his condition is deteriorating? I know I should see his Dr. > They'll just want to put him back on some drug - has been wanting > to even before we finished weaning. Results of tests done over > a month ago are not back. Rohan hates the idea of going on > AEDs again. I could bear going on even if the no: sz are > slightly more if he's better in himself (as he was till a few days > ago) > He has more sz on moderate to high ketones. Can't tolerate > oils much- makes him tired and yawny. He also seems to have > some digestive problems - horrid breath and v.stinky stools. > We've been giving him digestive enzymes on and off since > last month. > If anything occurs to anybody I'd be v.interested. > Thanks > Saro....Rohan's mum > > " 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 June 10, 2001 Report Share Posted June 10, 2001 Rohan's calories are 1560 and weight 42kg Saro kevin cooper wrote: > Hi Saro > What are Rohan's calories and weight? > Faye > > sanaljay wrote: > > > Hi Listmates, > > I just thought I'd give an update on my son Rohan. > > He's 12 yrs old and been free of drugs for 5 months. > > The last two Aeds were phenobarbitone and depakote. > > At the start of diet (Feb '00) inspite of too many cals > > etc. he was free of sz for a month. > > Then we started weaning pheno and he had a secondary > > generalized sz the day after we finished. Next we had > > a difficult time weaning dep with several sleep sz on > > certain days after reducing the med. Since becoming > > drug-free he started daytime sz again but concentration, > > mood etc. improved and the no: of sz/month was also > > marginally better. > > However last month he had more sz than when on AEds > > (mostly in the night). This month we got rid of night sz > > by stopping vit E (given at night) and had a couple of fairly > > good days. Then last Tuesday he forgot to take his cream > > and oil at school, we continued with 2.1:1 ratio as normal > > for dinner, and the ketones went high and he had 4 night sz. > > Since then he has been having night sz ( ketones at night > > 6-8 and mornings 0.5). For the last 4 days he has been > > v.daydreamy/distracted and can't remember things and also > > angry at times - just like when he was on high doses of drugs!! > > I just don't know what's happening - HAS ANYONE SEEN > > SOMETHING LIKE THIS ?? Could it be the night sz are > > wiping him out? or is it a passing phase and some AEDs > > are coming out of his system now after so many months? > > Or his condition is deteriorating? I know I should see his Dr. > > They'll just want to put him back on some drug - has been wanting > > to even before we finished weaning. Results of tests done over > > a month ago are not back. Rohan hates the idea of going on > > AEDs again. I could bear going on even if the no: sz are > > slightly more if he's better in himself (as he was till a few days > > ago) > > He has more sz on moderate to high ketones. Can't tolerate > > oils much- makes him tired and yawny. He also seems to have > > some digestive problems - horrid breath and v.stinky stools. > > We've been giving him digestive enzymes on and off since > > last month. > > If anything occurs to anybody I'd be v.interested. > > Thanks > > Saro....Rohan's mum > > > > " 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 June 10, 2001 Report Share Posted June 10, 2001 Saro... I know this is a scary thought, but what about going even lower on the ratio. If he's 6-8 at night, maybe it's still just too high for him. I seem to remember though that you had more stares (?) when you went lower??? I know that the month free at the beginning is such a strong lure, especially since he feels so much better med free. Sometimes though, I feel like I'm chasing a dream, and Sev gives me just enough fuel (good times) to keep me chasing. I say as long as he feels better, even if the seizures are the same, keep trying. If he continues to not feel as well, maybe it's time to consider the diet in combination with a low dose of a med. Not pheno or depakote or topamax, but maybe neurontin? It didn't effect Sev very much and they seem similiar. He actually seemed to have some cognitive improvements as well as improved vision on it. It just didn't control his seizures. I know this is such a horrid thought, but if he continues to have these hazy days, it might be worth thinking about. Quality of life is the issue...I've taken to looking at the zonegran package more often, kinda getting used to it if that's what it comes to get Sev's quality of life back up. Thankfully he's on the upswing again and I can quit looking at it for awhile...I really thought it was even an ugly package! Anyway...I know struggle you are facing. Hang in there and know that many of us are so impressed with your efforts to help Rohan..you put so much time and energy in to helping him...someday it'll pay off! Nan ----Original Message Follows---- Reply-To: ketogenic To: ketolist <ketogenic > Subject: Rohan - Update Date: Sun, 10 Jun 2001 23:19:02 +0100 Hi Listmates, I just thought I'd give an update on my son Rohan. He's 12 yrs old and been free of drugs for 5 months. The last two Aeds were phenobarbitone and depakote. At the start of diet (Feb '00) inspite of too many cals etc. he was free of sz for a month. Then we started weaning pheno and he had a secondary generalized sz the day after we finished. Next we had a difficult time weaning dep with several sleep sz on certain days after reducing the med. Since becoming drug-free he started daytime sz again but concentration, mood etc. improved and the no: of sz/month was also marginally better. However last month he had more sz than when on AEds (mostly in the night). This month we got rid of night sz by stopping vit E (given at night) and had a couple of fairly good days. Then last Tuesday he forgot to take his cream and oil at school, we continued with 2.1:1 ratio as normal for dinner, and the ketones went high and he had 4 night sz. Since then he has been having night sz ( ketones at night 6-8 and mornings 0.5). For the last 4 days he has been v.daydreamy/distracted and can't remember things and also angry at times - just like when he was on high doses of drugs!! I just don't know what's happening - HAS ANYONE SEEN SOMETHING LIKE THIS ?? Could it be the night sz are wiping him out? or is it a passing phase and some AEDs are coming out of his system now after so many months? Or his condition is deteriorating? I know I should see his Dr. They'll just want to put him back on some drug - has been wanting to even before we finished weaning. Results of tests done over a month ago are not back. Rohan hates the idea of going on AEDs again. I could bear going on even if the no: sz are slightly more if he's better in himself (as he was till a few days ago) He has more sz on moderate to high ketones. Can't tolerate oils much- makes him tired and yawny. He also seems to have some digestive problems - horrid breath and v.stinky stools. We've been giving him digestive enzymes on and off since last month. If anything occurs to anybody I'd be v.interested. Thanks Saro....Rohan's mum _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Dear Saro: What is your schedule on the Digestive Ensymes? We give Josh digestive ensymes with Breakfast and with Supper-it seems to clean out his digestive track twice a day-with the B-6 which I understand to be a Protein, Fat and Carbohtdrate Metabolizer it stopped the yawny-hyperventalation stuff. Saro you are a super Mom-this has been such a hard row for you. Can you call your Neuro to get those results. I would be very angry, as you are about the length of time they are taking on those. I am praying that you get your answer soon-you guys sure deserve it!! Hugs Diane Rohan - Update > Hi Listmates, > I just thought I'd give an update on my son Rohan. > He's 12 yrs old and been free of drugs for 5 months. > The last two Aeds were phenobarbitone and depakote. > At the start of diet (Feb '00) inspite of too many cals > etc. he was free of sz for a month. > Then we started weaning pheno and he had a secondary > generalized sz the day after we finished. Next we had > a difficult time weaning dep with several sleep sz on > certain days after reducing the med. Since becoming > drug-free he started daytime sz again but concentration, > mood etc. improved and the no: of sz/month was also > marginally better. > However last month he had more sz than when on AEds > (mostly in the night). This month we got rid of night sz > by stopping vit E (given at night) and had a couple of fairly > good days. Then last Tuesday he forgot to take his cream > and oil at school, we continued with 2.1:1 ratio as normal > for dinner, and the ketones went high and he had 4 night sz. > Since then he has been having night sz ( ketones at night > 6-8 and mornings 0.5). For the last 4 days he has been > v.daydreamy/distracted and can't remember things and also > angry at times - just like when he was on high doses of drugs!! > I just don't know what's happening - HAS ANYONE SEEN > SOMETHING LIKE THIS ?? Could it be the night sz are > wiping him out? or is it a passing phase and some AEDs > are coming out of his system now after so many months? > Or his condition is deteriorating? I know I should see his Dr. > They'll just want to put him back on some drug - has been wanting > to even before we finished weaning. Results of tests done over > a month ago are not back. Rohan hates the idea of going on > AEDs again. I could bear going on even if the no: sz are > slightly more if he's better in himself (as he was till a few days > ago) > He has more sz on moderate to high ketones. Can't tolerate > oils much- makes him tired and yawny. He also seems to have > some digestive problems - horrid breath and v.stinky stools. > We've been giving him digestive enzymes on and off since > last month. > If anything occurs to anybody I'd be v.interested. > Thanks > Saro....Rohan's mum > > > " 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 June 10, 2001 Report Share Posted June 10, 2001 Dear Saro, I have not weaned pheno and depakote so I can't comment on them in particular, but I can comment on my experience of Hannah's lamictal wean. During the wean we only saw a slight reduction in sz control, but after the wean was completed things got quite bad, in fact worse than they had been for more than two years. Tonic clonics began again and some needed rectal valium. So, although the drugs are different and the symptoms are too, my point is that sz control can in fact become worse well after a wean is done. I do believe it can take a long time after the wean is finished to finally get all of the drug out of the system. The neuro's inclination was to REintroduce lamictal, but I stood firm in my belief that the increased sz were withdrawals, although she was not too keen on the idea. In the end I was proven right and we are now lamictal free and the big sz's have stopped. Still a few partials each day but no more than we had pre-wean. Hope this encourages you in some way to hang in there and go with any gut feling you might have. In our case it was clearly withdrawals happening, and I hope that you can find the answer to Rohan's problems real soon. Sorry I have nothing concrete to offer. Love and hugs (Hannah's mum, Australia) ----- Original Message ----- > However last month he had more sz than when on AEds > (mostly in the night). This month we got rid of night sz > by stopping vit E (given at night) and had a couple of fairly > good days. Then last Tuesday he forgot to take his cream > and oil at school, we continued with 2.1:1 ratio as normal > for dinner, and the ketones went high and he had 4 night sz. > Since then he has been having night sz ( ketones at night > 6-8 and mornings 0.5). For the last 4 days he has been > v.daydreamy/distracted and can't remember things and also > angry at times - just like when he was on high doses of drugs!! > I just don't know what's happening - HAS ANYONE SEEN > SOMETHING LIKE THIS ?? Could it be the night sz are > wiping him out? or is it a passing phase and some AEDs > are coming out of his system now after so many months? > Or his condition is deteriorating? I know I should see his Dr. > They'll just want to put him back on some drug - has been wanting > to even before we finished weaning. Results of tests done over > a month ago are not back. Rohan hates the idea of going on > AEDs again. I could bear going on even if the no: sz are > slightly more if he's better in himself (as he was till a few days > ago) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Nan, Thank you v.much for your thoughts. I've been thinking along the same lines. Last night Rohan had sz coming every 10mts or so, gave 10mg r.diazipam twice in 20mts with no effect on sz, except making him too groggy to wake up. We tried to give him some depakote -yes it's true , as a desperate measure, but couldn't get him awake to swallow. In the end when a sz was starting, we pulled him up to a sitting position rubbed his ears and talked to him and managed to avert two of them becoming full-blown. This very thing happened over an year ago when he first started the diet. He'd been free of depakote for about 3 weeks by then, because his Dr. stopped it all at once before the diet. He had sleep sz every few mts (26 one night, where diazipam didn't work) but was OK when awake. Then his Dr. put 3/4 of the depakote back, and it stopped the sleep-sz. The sz free month happened after that. Depakote on its own or with other AEDs hadn't helped Rohan before, but he was put on it again after abandoning it 7 years ago, as it seemed to have fewer side effects and his Drs thought it might help in some combination with other AEDs. My theory is, there must be still some dep hanging around and ketones and it must be balanced. ie if level of dep is high the ketones can be high without sz, but if the level of dep is low the ketones must be correspondingly low (proved during the wean). Currently ketones are high at night - probably because of the d.enzymes. I think the problem with vit E was also that it made the ketones higher. Whatever the cause, high ketones are bad news for Rohan! I think d.enzymes could have been helping the digestive problems but after a week or so, things go bad due to high ketones. However when I try to decrease the ratio below 2, he has more stopping/freezing incidents and any generalized sz are more prolonged. So after much confused thinking round and round, decided to stick to 2.1 and stop d.enzymes. I'm more confused about the 'dazed' behaviour the last four days or so. In March Rohan was so with it at school - got 96% in a maths test (the highest in his group) and was put into gp A, but now he seems 'not to be there at times'. Sorry for the lenthy reply - it helped me to put my thoughts together. Saro nanett prausa wrote: > Saro... > > I know this is a scary thought, but what about going even lower on the > > ratio. If he's 6-8 at night, maybe it's still just too high for him. > I seem > to remember though that you had more stares (?) when you went > lower??? I > know that the month free at the beginning is such a strong lure, > especially > since he feels so much better med free. Sometimes though, I feel like > I'm > chasing a dream, and Sev gives me just enough fuel (good times) to > keep me > chasing. I say as long as he feels better, even if the seizures are > the > same, keep trying. If he continues to not feel as well, maybe it's > time to > consider the diet in combination with a low dose of a med. Not pheno > or > depakote or topamax, but maybe neurontin? It didn't effect Sev very > much > and they seem similiar. He actually seemed to have some cognitive > improvements as well as improved vision on it. It just didn't control > his > seizures. I know this is such a horrid thought, but if he continues to > have > these hazy days, it might be worth thinking about. Quality of life is > the > issue...I've taken to looking at the zonegran package more often, > kinda > getting used to it if that's what it comes to get Sev's quality of > life back > up. Thankfully he's on the upswing again and I can quit looking at it > for > awhile...I really thought it was even an ugly package! Anyway...I > know > struggle you are facing. Hang in there and know that many of us are > so > impressed with your efforts to help Rohan..you put so much time and > energy > in to helping him...someday it'll pay off! Nan > > > ----Original Message Follows---- > > Reply-To: ketogenic > To: ketolist <ketogenic > > Subject: Rohan - Update > Date: Sun, 10 Jun 2001 23:19:02 +0100 > > Hi Listmates, > I just thought I'd give an update on my son Rohan. > He's 12 yrs old and been free of drugs for 5 months. > The last two Aeds were phenobarbitone and depakote. > At the start of diet (Feb '00) inspite of too many cals > etc. he was free of sz for a month. > Then we started weaning pheno and he had a secondary > generalized sz the day after we finished. Next we had > a difficult time weaning dep with several sleep sz on > certain days after reducing the med. Since becoming > drug-free he started daytime sz again but concentration, > mood etc. improved and the no: of sz/month was also > marginally better. > However last month he had more sz than when on AEds > (mostly in the night). This month we got rid of night sz > by stopping vit E (given at night) and had a couple of fairly > good days. Then last Tuesday he forgot to take his cream > and oil at school, we continued with 2.1:1 ratio as normal > for dinner, and the ketones went high and he had 4 night sz. > Since then he has been having night sz ( ketones at night > 6-8 and mornings 0.5). For the last 4 days he has been > v.daydreamy/distracted and can't remember things and also > angry at times - just like when he was on high doses of drugs!! > I just don't know what's happening - HAS ANYONE SEEN > SOMETHING LIKE THIS ?? Could it be the night sz are > wiping him out? or is it a passing phase and some AEDs > are coming out of his system now after so many months? > Or his condition is deteriorating? I know I should see his Dr. > They'll just want to put him back on some drug - has been wanting > to even before we finished weaning. Results of tests done over > a month ago are not back. Rohan hates the idea of going on > AEDs again. I could bear going on even if the no: sz are > slightly more if he's better in himself (as he was till a few days > ago) > He has more sz on moderate to high ketones. Can't tolerate > oils much- makes him tired and yawny. He also seems to have > some digestive problems - horrid breath and v.stinky stools. > We've been giving him digestive enzymes on and off since > last month. > If anything occurs to anybody I'd be v.interested. > Thanks > Saro....Rohan's mum > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Nan, Thank you v.much for your thoughts. I've been thinking along the same lines. Last night Rohan had sz coming every 10mts or so, gave 10mg r.diazipam twice in 20mts with no effect on sz, except making him too groggy to wake up. We tried to give him some depakote -yes it's true , as a desperate measure, but couldn't get him awake to swallow. In the end when a sz was starting, we pulled him up to a sitting position rubbed his ears and talked to him and managed to avert two of them becoming full-blown. This very thing happened over an year ago when he first started the diet. He'd been free of depakote for about 3 weeks by then, because his Dr. stopped it all at once before the diet. He had sleep sz every few mts (26 one night, where diazipam didn't work) but was OK when awake. Then his Dr. put 3/4 of the depakote back, and it stopped the sleep-sz. The sz free month happened after that. Depakote on its own or with other AEDs hadn't helped Rohan before, but he was put on it again after abandoning it 7 years ago, as it seemed to have fewer side effects and his Drs thought it might help in some combination with other AEDs. My theory is, there must be still some dep hanging around and ketones and it must be balanced. ie if level of dep is high the ketones can be high without sz, but if the level of dep is low the ketones must be correspondingly low (proved during the wean). Currently ketones are high at night - probably because of the d.enzymes. I think the problem with vit E was also that it made the ketones higher. Whatever the cause, high ketones are bad news for Rohan! I think d.enzymes could have been helping the digestive problems but after a week or so, things go bad due to high ketones. However when I try to decrease the ratio below 2, he has more stopping/freezing incidents and any generalized sz are more prolonged. So after much confused thinking round and round, decided to stick to 2.1 and stop d.enzymes. I'm more confused about the 'dazed' behaviour the last four days or so. In March Rohan was so with it at school - got 96% in a maths test (the highest in his group) and was put into gp A, but now he seems 'not to be there at times'. Sorry for the lenthy reply - it helped me to put my thoughts together. Saro nanett prausa wrote: > Saro... > > I know this is a scary thought, but what about going even lower on the > > ratio. If he's 6-8 at night, maybe it's still just too high for him. > I seem > to remember though that you had more stares (?) when you went > lower??? I > know that the month free at the beginning is such a strong lure, > especially > since he feels so much better med free. Sometimes though, I feel like > I'm > chasing a dream, and Sev gives me just enough fuel (good times) to > keep me > chasing. I say as long as he feels better, even if the seizures are > the > same, keep trying. If he continues to not feel as well, maybe it's > time to > consider the diet in combination with a low dose of a med. Not pheno > or > depakote or topamax, but maybe neurontin? It didn't effect Sev very > much > and they seem similiar. He actually seemed to have some cognitive > improvements as well as improved vision on it. It just didn't control > his > seizures. I know this is such a horrid thought, but if he continues to > have > these hazy days, it might be worth thinking about. Quality of life is > the > issue...I've taken to looking at the zonegran package more often, > kinda > getting used to it if that's what it comes to get Sev's quality of > life back > up. Thankfully he's on the upswing again and I can quit looking at it > for > awhile...I really thought it was even an ugly package! Anyway...I > know > struggle you are facing. Hang in there and know that many of us are > so > impressed with your efforts to help Rohan..you put so much time and > energy > in to helping him...someday it'll pay off! Nan > > > ----Original Message Follows---- > > Reply-To: ketogenic > To: ketolist <ketogenic > > Subject: Rohan - Update > Date: Sun, 10 Jun 2001 23:19:02 +0100 > > Hi Listmates, > I just thought I'd give an update on my son Rohan. > He's 12 yrs old and been free of drugs for 5 months. > The last two Aeds were phenobarbitone and depakote. > At the start of diet (Feb '00) inspite of too many cals > etc. he was free of sz for a month. > Then we started weaning pheno and he had a secondary > generalized sz the day after we finished. Next we had > a difficult time weaning dep with several sleep sz on > certain days after reducing the med. Since becoming > drug-free he started daytime sz again but concentration, > mood etc. improved and the no: of sz/month was also > marginally better. > However last month he had more sz than when on AEds > (mostly in the night). This month we got rid of night sz > by stopping vit E (given at night) and had a couple of fairly > good days. Then last Tuesday he forgot to take his cream > and oil at school, we continued with 2.1:1 ratio as normal > for dinner, and the ketones went high and he had 4 night sz. > Since then he has been having night sz ( ketones at night > 6-8 and mornings 0.5). For the last 4 days he has been > v.daydreamy/distracted and can't remember things and also > angry at times - just like when he was on high doses of drugs!! > I just don't know what's happening - HAS ANYONE SEEN > SOMETHING LIKE THIS ?? Could it be the night sz are > wiping him out? or is it a passing phase and some AEDs > are coming out of his system now after so many months? > Or his condition is deteriorating? I know I should see his Dr. > They'll just want to put him back on some drug - has been wanting > to even before we finished weaning. Results of tests done over > a month ago are not back. Rohan hates the idea of going on > AEDs again. I could bear going on even if the no: sz are > slightly more if he's better in himself (as he was till a few days > ago) > He has more sz on moderate to high ketones. Can't tolerate > oils much- makes him tired and yawny. He also seems to have > some digestive problems - horrid breath and v.stinky stools. > We've been giving him digestive enzymes on and off since > last month. > If anything occurs to anybody I'd be v.interested. > Thanks > Saro....Rohan's mum > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Dear Diane, Thanks so much for your input. I'd been giving d.enzymes at breakfast and dinner too. His ketones have been higher at nights - so perhaps it's doing what it's supposed to do - but high ketones are a no-no for Rohan. Re. the test results I've rung four times and they've said they are not back from the labs. Lately, I didn't bother specially as I know their answer is- try another AED (we've done 10 or 11 without success in the past) without trying to help the diet work with some supplements or finding other ways to help. I want to try B6 again (last time the dose was too little to see any results) but am waiting for the holidays. The osteopathy doesn't seem to be doing much if anything, at the moment but we'll see. Thanks again for the moral support. Saro Diane Wall wrote: > Dear Saro: > > What is your schedule on the Digestive Ensymes? We give Josh > digestive > ensymes with Breakfast and with Supper-it seems to clean out his > digestive > track twice a day-with the B-6 which I understand to be a Protein, Fat > and > Carbohtdrate Metabolizer it stopped the yawny-hyperventalation stuff. > > Saro you are a super Mom-this has been such a hard row for you. Can > you > call your Neuro to get those results. I would be very angry, as you > are > about the length of time they are taking on those. > > I am praying that you get your answer soon-you guys sure deserve it!! > > Hugs > Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Dear , I'm glad you stood firm about not putting Lamictal back. It seems to bring on night sz etc. We have been fighting about not putting depakote back during the wean too. The thing is, we've been free of it for 5 months and things have been better after the wean, than now. I must say, I did my best to get him to take some dep last night as a desperate measure. He had frequent sleep sz last night. When the same sort of thing happened and diazipam didn't work - all the hospital did was 'keep an eye on him'. So we felt so helpless, but luckily perhaps, he didn't wake up to swallow! I have a feeling the problem is ketones are too high. Hope Hannah gets through the weans without many problems. Saro....Rohan's mum " GAVAN J. CANAVAN " wrote: > Dear Saro, > I have not weaned pheno and depakote so I can't comment on them in > > particular, but I can comment on my experience of Hannah's lamictal > wean. > During the wean we only saw a slight reduction in sz control, but > after the > wean was completed things got quite bad, in fact worse than they had > been > for more than two years. Tonic clonics began again and some needed > rectal > valium. > So, although the drugs are different and the symptoms are too, my > point > is that sz control can in fact become worse well after a wean is done. > I do > believe it can take a long time after the wean is finished to finally > get > all of the drug out of the system. > The neuro's inclination was to REintroduce lamictal, but I stood > firm in > my belief that the increased sz were withdrawals, although she was not > too > keen on the idea. In the end I was proven right and we are now > lamictal free > and the big sz's have stopped. Still a few partials each day but no > more > than we had pre-wean. > Hope this encourages you in some way to hang in there and go with > any > gut feling you might have. In our case it was clearly withdrawals > happening, > and I hope that you can find the answer to Rohan's problems real soon. > Sorry > I have nothing concrete to offer. > Love and hugs > (Hannah's mum, Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Dear , I'm glad you stood firm about not putting Lamictal back. It seems to bring on night sz etc. We have been fighting about not putting depakote back during the wean too. The thing is, we've been free of it for 5 months and things have been better after the wean, than now. I must say, I did my best to get him to take some dep last night as a desperate measure. He had frequent sleep sz last night. When the same sort of thing happened and diazipam didn't work - all the hospital did was 'keep an eye on him'. So we felt so helpless, but luckily perhaps, he didn't wake up to swallow! I have a feeling the problem is ketones are too high. Hope Hannah gets through the weans without many problems. Saro....Rohan's mum " GAVAN J. CANAVAN " wrote: > Dear Saro, > I have not weaned pheno and depakote so I can't comment on them in > > particular, but I can comment on my experience of Hannah's lamictal > wean. > During the wean we only saw a slight reduction in sz control, but > after the > wean was completed things got quite bad, in fact worse than they had > been > for more than two years. Tonic clonics began again and some needed > rectal > valium. > So, although the drugs are different and the symptoms are too, my > point > is that sz control can in fact become worse well after a wean is done. > I do > believe it can take a long time after the wean is finished to finally > get > all of the drug out of the system. > The neuro's inclination was to REintroduce lamictal, but I stood > firm in > my belief that the increased sz were withdrawals, although she was not > too > keen on the idea. In the end I was proven right and we are now > lamictal free > and the big sz's have stopped. Still a few partials each day but no > more > than we had pre-wean. > Hope this encourages you in some way to hang in there and go with > any > gut feling you might have. In our case it was clearly withdrawals > happening, > and I hope that you can find the answer to Rohan's problems real soon. > Sorry > I have nothing concrete to offer. > Love and hugs > (Hannah's mum, Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Dear , I'm glad you stood firm about not putting Lamictal back. It seems to bring on night sz etc. We have been fighting about not putting depakote back during the wean too. The thing is, we've been free of it for 5 months and things have been better after the wean, than now. I must say, I did my best to get him to take some dep last night as a desperate measure. He had frequent sleep sz last night. When the same sort of thing happened and diazipam didn't work - all the hospital did was 'keep an eye on him'. So we felt so helpless, but luckily perhaps, he didn't wake up to swallow! I have a feeling the problem is ketones are too high. Hope Hannah gets through the weans without many problems. Saro....Rohan's mum " GAVAN J. CANAVAN " wrote: > Dear Saro, > I have not weaned pheno and depakote so I can't comment on them in > > particular, but I can comment on my experience of Hannah's lamictal > wean. > During the wean we only saw a slight reduction in sz control, but > after the > wean was completed things got quite bad, in fact worse than they had > been > for more than two years. Tonic clonics began again and some needed > rectal > valium. > So, although the drugs are different and the symptoms are too, my > point > is that sz control can in fact become worse well after a wean is done. > I do > believe it can take a long time after the wean is finished to finally > get > all of the drug out of the system. > The neuro's inclination was to REintroduce lamictal, but I stood > firm in > my belief that the increased sz were withdrawals, although she was not > too > keen on the idea. In the end I was proven right and we are now > lamictal free > and the big sz's have stopped. Still a few partials each day but no > more > than we had pre-wean. > Hope this encourages you in some way to hang in there and go with > any > gut feling you might have. In our case it was clearly withdrawals > happening, > and I hope that you can find the answer to Rohan's problems real soon. > Sorry > I have nothing concrete to offer. > Love and hugs > (Hannah's mum, Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Nan, Thank you v.much for your thoughts. I've been thinking along the same lines. Last night Rohan had sz coming every 10mts or so, gave 10mg r.diazipam twice in 20mts with no effect on sz, except making him too groggy to wake up. We tried to give him some depakote -yes it's true , as a desperate measure, but couldn't get him awake to swallow. In the end when a sz was starting, we pulled him up to a sitting position rubbed his ears and talked to him and managed to avert two of them becoming full-blown. This very thing happened over an year ago when he first started the diet. He'd been free of depakote for about 3 weeks by then, because his Dr. stopped it all at once before the diet. He had sleep sz every few mts (26 one night, where diazipam didn't work) but was OK when awake. Then his Dr. put 3/4 of the depakote back, and it stopped the sleep-sz. The sz free month happened after that. Depakote on its own or with other AEDs hadn't helped Rohan before, but he was put on it again after abandoning it 7 years ago, as it seemed to have fewer side effects and his Drs thought it might help in some combination with other AEDs. My theory is, there must be still some dep hanging around and ketones and it must be balanced. ie if level of dep is high the ketones can be high without sz, but if the level of dep is low the ketones must be correspondingly low (proved during the wean). Currently ketones are high at night - probably because of the d.enzymes. I think the problem with vit E was also that it made the ketones higher. Whatever the cause, high ketones are bad news for Rohan! I think d.enzymes could have been helping the digestive problems but after a week or so, things go bad due to high ketones. However when I try to decrease the ratio below 2, he has more stopping/freezing incidents and any generalized sz are more prolonged. So after much confused thinking round and round, decided to stick to 2.1 and stop d.enzymes. I'm more confused about the 'dazed' behaviour the last four days or so. In March Rohan was so with it at school - got 96% in a maths test (the highest in his group) and was put into gp A, but now he seems 'not to be there at times'. Sorry for the lenthy reply - it helped me to put my thoughts together. Saro nanett prausa wrote: > Saro... > > I know this is a scary thought, but what about going even lower on the > > ratio. If he's 6-8 at night, maybe it's still just too high for him. > I seem > to remember though that you had more stares (?) when you went > lower??? I > know that the month free at the beginning is such a strong lure, > especially > since he feels so much better med free. Sometimes though, I feel like > I'm > chasing a dream, and Sev gives me just enough fuel (good times) to > keep me > chasing. I say as long as he feels better, even if the seizures are > the > same, keep trying. If he continues to not feel as well, maybe it's > time to > consider the diet in combination with a low dose of a med. Not pheno > or > depakote or topamax, but maybe neurontin? It didn't effect Sev very > much > and they seem similiar. He actually seemed to have some cognitive > improvements as well as improved vision on it. It just didn't control > his > seizures. I know this is such a horrid thought, but if he continues to > have > these hazy days, it might be worth thinking about. Quality of life is > the > issue...I've taken to looking at the zonegran package more often, > kinda > getting used to it if that's what it comes to get Sev's quality of > life back > up. Thankfully he's on the upswing again and I can quit looking at it > for > awhile...I really thought it was even an ugly package! Anyway...I > know > struggle you are facing. Hang in there and know that many of us are > so > impressed with your efforts to help Rohan..you put so much time and > energy > in to helping him...someday it'll pay off! Nan > > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Nan, Thank you v.much for your thoughts. I've been thinking along the same lines. Last night Rohan had sz coming every 10mts or so, gave 10mg r.diazipam twice in 20mts with no effect on sz, except making him too groggy to wake up. We tried to give him some depakote -yes it's true , as a desperate measure, but couldn't get him awake to swallow. In the end when a sz was starting, we pulled him up to a sitting position rubbed his ears and talked to him and managed to avert two of them becoming full-blown. This very thing happened over an year ago when he first started the diet. He'd been free of depakote for about 3 weeks by then, because his Dr. stopped it all at once before the diet. He had sleep sz every few mts (26 one night, where diazipam didn't work) but was OK when awake. Then his Dr. put 3/4 of the depakote back, and it stopped the sleep-sz. The sz free month happened after that. Depakote on its own or with other AEDs hadn't helped Rohan before, but he was put on it again after abandoning it 7 years ago, as it seemed to have fewer side effects and his Drs thought it might help in some combination with other AEDs. My theory is, there must be still some dep hanging around and ketones and it must be balanced. ie if level of dep is high the ketones can be high without sz, but if the level of dep is low the ketones must be correspondingly low (proved during the wean). Currently ketones are high at night - probably because of the d.enzymes. I think the problem with vit E was also that it made the ketones higher. Whatever the cause, high ketones are bad news for Rohan! I think d.enzymes could have been helping the digestive problems but after a week or so, things go bad due to high ketones. However when I try to decrease the ratio below 2, he has more stopping/freezing incidents and any generalized sz are more prolonged. So after much confused thinking round and round, decided to stick to 2.1 and stop d.enzymes. I'm more confused about the 'dazed' behaviour the last four days or so. In March Rohan was so with it at school - got 96% in a maths test (the highest in his group) and was put into gp A, but now he seems 'not to be there at times'. Sorry for the lenthy reply - it helped me to put my thoughts together. Saro nanett prausa wrote: > Saro... > > I know this is a scary thought, but what about going even lower on the > > ratio. If he's 6-8 at night, maybe it's still just too high for him. > I seem > to remember though that you had more stares (?) when you went > lower??? I > know that the month free at the beginning is such a strong lure, > especially > since he feels so much better med free. Sometimes though, I feel like > I'm > chasing a dream, and Sev gives me just enough fuel (good times) to > keep me > chasing. I say as long as he feels better, even if the seizures are > the > same, keep trying. If he continues to not feel as well, maybe it's > time to > consider the diet in combination with a low dose of a med. Not pheno > or > depakote or topamax, but maybe neurontin? It didn't effect Sev very > much > and they seem similiar. He actually seemed to have some cognitive > improvements as well as improved vision on it. It just didn't control > his > seizures. I know this is such a horrid thought, but if he continues to > have > these hazy days, it might be worth thinking about. Quality of life is > the > issue...I've taken to looking at the zonegran package more often, > kinda > getting used to it if that's what it comes to get Sev's quality of > life back > up. Thankfully he's on the upswing again and I can quit looking at it > for > awhile...I really thought it was even an ugly package! Anyway...I > know > struggle you are facing. Hang in there and know that many of us are > so > impressed with your efforts to help Rohan..you put so much time and > energy > in to helping him...someday it'll pay off! Nan > > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Saro... Sev has these good and bad spells as well. I never know for sure if what I'm doing is the cause or if it is just a coincidence. Pretty much the only things I know for sure about Sev at this point is: 1. He's much better off on the diet than he was on the meds...more alert, fewer seizures. One thing that bothers me though is that he had never had a grand mal prior to the diet...they started about a month into it. He had begun having the long (15-30 minutes) starey partials before the diet, so possibly he was moving towards the grand mals anyway, but I'll never know. 2. Even moderate ketones increases his seizures. I think even small does though I was not really successful at maintaining small long enough to know. He'd either go negative or back up to moderate. I thought he did better with fewer oils, but this past week camping, he mostly had bottles with the RCF...lots of oils and he had decent control...only the one I mentioned before. So now I'm confused on that point too. I really think Sev's body just craves change. If I settle into anything too long, he goes beserk. Like I said, he's the classic honeymoon kid...we'll get a good week or two out of most changes, then it begins to fall apart. I wish someone knew why certain systems seem to adapt to things so quickly and then rebel against them? Given all of this, we are certainly staying on the diet. I know you feel the same way, but I wonder about the day when I can't find the next change that helps. I'd give Rohan a good week before deciding to do anything drastic. Maybe he's fighting a little infection. Maybe something the osteopath is doing is making some progress under the whole 'darkest before the dawn' theory. I know it's hard not to be actively doing something when it seems like things are falling apart, but sometimes that's the best solution. If I had given Sev the zonegran when things were at their darkest before the vacation, I would've thought the zonegran was responsible for his good control on vacation. I really believe now that two weeks is the best time to wait before making a change. Try to hold tight and see if he comes around. Since he does poorly on the higher ketones, maybe give some OJ before bed and see if that keeps them down during the night. Just try to get through the next week and give yourself some time to think and mull things over. I'll be praying for you and Rohan. I know how hard it is to feel helpless when you are trying so hard. You must be exhausted...try to get some rest. Love, Nan ----Original Message Follows---- Reply-To: ketogenic To: ketogenic Subject: Re: Rohan - Update Date: Mon, 11 Jun 2001 13:45:59 +0100 Nan, Thank you v.much for your thoughts. I've been thinking along the same lines. Last night Rohan had sz coming every 10mts or so, gave 10mg r.diazipam twice in 20mts with no effect on sz, except making him too groggy to wake up. We tried to give him some depakote -yes it's true , as a desperate measure, but couldn't get him awake to swallow. In the end when a sz was starting, we pulled him up to a sitting position rubbed his ears and talked to him and managed to avert two of them becoming full-blown. This very thing happened over an year ago when he first started the diet. He'd been free of depakote for about 3 weeks by then, because his Dr. stopped it all at once before the diet. He had sleep sz every few mts (26 one night, where diazipam didn't work) but was OK when awake. Then his Dr. put 3/4 of the depakote back, and it stopped the sleep-sz. The sz free month happened after that. Depakote on its own or with other AEDs hadn't helped Rohan before, but he was put on it again after abandoning it 7 years ago, as it seemed to have fewer side effects and his Drs thought it might help in some combination with other AEDs. My theory is, there must be still some dep hanging around and ketones and it must be balanced. ie if level of dep is high the ketones can be high without sz, but if the level of dep is low the ketones must be correspondingly low (proved during the wean). Currently ketones are high at night - probably because of the d.enzymes. I think the problem with vit E was also that it made the ketones higher. Whatever the cause, high ketones are bad news for Rohan! I think d.enzymes could have been helping the digestive problems but after a week or so, things go bad due to high ketones. However when I try to decrease the ratio below 2, he has more stopping/freezing incidents and any generalized sz are more prolonged. So after much confused thinking round and round, decided to stick to 2.1 and stop d.enzymes. I'm more confused about the 'dazed' behaviour the last four days or so. In March Rohan was so with it at school - got 96% in a maths test (the highest in his group) and was put into gp A, but now he seems 'not to be there at times'. Sorry for the lenthy reply - it helped me to put my thoughts together. Saro nanett prausa wrote: > Saro... > > I know this is a scary thought, but what about going even lower on the > > ratio. If he's 6-8 at night, maybe it's still just too high for him. > I seem > to remember though that you had more stares (?) when you went > lower??? I > know that the month free at the beginning is such a strong lure, > especially > since he feels so much better med free. Sometimes though, I feel like > I'm > chasing a dream, and Sev gives me just enough fuel (good times) to > keep me > chasing. I say as long as he feels better, even if the seizures are > the > same, keep trying. If he continues to not feel as well, maybe it's > time to > consider the diet in combination with a low dose of a med. Not pheno > or > depakote or topamax, but maybe neurontin? It didn't effect Sev very > much > and they seem similiar. He actually seemed to have some cognitive > improvements as well as improved vision on it. It just didn't control > his > seizures. I know this is such a horrid thought, but if he continues to > have > these hazy days, it might be worth thinking about. Quality of life is > the > issue...I've taken to looking at the zonegran package more often, > kinda > getting used to it if that's what it comes to get Sev's quality of > life back > up. Thankfully he's on the upswing again and I can quit looking at it > for > awhile...I really thought it was even an ugly package! Anyway...I > know > struggle you are facing. Hang in there and know that many of us are > so > impressed with your efforts to help Rohan..you put so much time and > energy > in to helping him...someday it'll pay off! Nan > > > ----Original Message Follows---- > > Reply-To: ketogenic > To: ketolist <ketogenic > > Subject: Rohan - Update > Date: Sun, 10 Jun 2001 23:19:02 +0100 > > Hi Listmates, > I just thought I'd give an update on my son Rohan. > He's 12 yrs old and been free of drugs for 5 months. > The last two Aeds were phenobarbitone and depakote. > At the start of diet (Feb '00) inspite of too many cals > etc. he was free of sz for a month. > Then we started weaning pheno and he had a secondary > generalized sz the day after we finished. Next we had > a difficult time weaning dep with several sleep sz on > certain days after reducing the med. Since becoming > drug-free he started daytime sz again but concentration, > mood etc. improved and the no: of sz/month was also > marginally better. > However last month he had more sz than when on AEds > (mostly in the night). This month we got rid of night sz > by stopping vit E (given at night) and had a couple of fairly > good days. Then last Tuesday he forgot to take his cream > and oil at school, we continued with 2.1:1 ratio as normal > for dinner, and the ketones went high and he had 4 night sz. > Since then he has been having night sz ( ketones at night > 6-8 and mornings 0.5). For the last 4 days he has been > v.daydreamy/distracted and can't remember things and also > angry at times - just like when he was on high doses of drugs!! > I just don't know what's happening - HAS ANYONE SEEN > SOMETHING LIKE THIS ?? Could it be the night sz are > wiping him out? or is it a passing phase and some AEDs > are coming out of his system now after so many months? > Or his condition is deteriorating? I know I should see his Dr. > They'll just want to put him back on some drug - has been wanting > to even before we finished weaning. Results of tests done over > a month ago are not back. Rohan hates the idea of going on > AEDs again. I could bear going on even if the no: sz are > slightly more if he's better in himself (as he was till a few days > ago) > He has more sz on moderate to high ketones. Can't tolerate > oils much- makes him tired and yawny. He also seems to have > some digestive problems - horrid breath and v.stinky stools. > We've been giving him digestive enzymes on and off since > last month. > If anything occurs to anybody I'd be v.interested. > Thanks > Saro....Rohan's mum > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 My theory is, there must be still some dep hanging around and ketones and it must be balanced. ie if level of dep is high the ketones can be high without sz, but if the level of dep is low the ketones must be correspondingly low (proved during the wean). Hey Saro.. Sorry to read bout your recent seizures!!! I do agree with ya on the depacrap, well in part anyway...I was knocking around the idea with Opal that maybe since Dep is transported in the fats (the reason its contraindicated wit the diet) that maybe somehow its stored in the fats?? our theory is that eventually after weaning (could be several months) that you get into the fat stores containing the remaining dep??? and see those weaning seizures return! I donno about the corresponding ketone level...I know most kids have had to reduce ratios with dep, but Bry could never get to high ketones so we never had that experience. When did you finish weaning Dep?? our return of the withdrawels happened about 3 months later. Currently ketones are high at night - probably because of the d.enzymes. I think the problem with vit E was also that it made the ketones higher. Whatever the cause, high ketones are bad news for Rohan! I donno.... I think it was and Jess had a problem with digestive enzymes but If I remember right it was from decreased acidity?? I highly recommend the enzymes! what kind are you using?? on the E what kind are you using?? I was told to make sure to use mixed Tocopherols...in english....there are several different forms of e and you need to be sure its not the dl (synthetic form) could be diluted with rancid oils too...Twin labs makes a mixed dry e (no carbs) that has the d-alpha, D beta, ect...but currently im using one dr recommended by A. C. Grace called Unique E. its700 mgs which Bry gets twice daily. C and E are extremely important antioxidants necessary with this diet!! there are even studies on E and seizures too! I would look into this further! Bry takes 2000 C daily and 1400 e daily cya Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 At 11:09 AM 6/11/01 -0600, you wrote: >I thought he did better with fewer oils, but this past week camping, he >mostly had bottles with the RCF...lots of oils and he had decent >control...only the one I mentioned before. So now I'm confused on that >point too. I really think Sev's body just craves change. If I settle into >anything too long, he goes beserk. Like I said, he's the classic honeymoon >kid...we'll get a good week or two out of most changes, then it begins to >fall apart. Nan, Just a thought about Sev and his " honeymooning " . Maybe he's the kind of kid that needs things cycled in and out. Like with the oils, they didn't " work " after a while, but after a time they might " work " again. I know with the echinacea that I take, it works better for me if I take it 3 weeks on and a week or two off. Maybe that kind of change would be the thing for your guy. I know...one more thing to keep track of, but maybe that would keep you from running out of things!! mom to Esther (Aicardi Syndrome) in northern California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 {{{{{{{{{{{{{{{SARO}}}}}}}}}}}}}}}}}} Praying for you............love, Deb > Hi Listmates, > I just thought I'd give an update on my son Rohan. > He's 12 yrs old and been free of drugs for 5 months. > The last two Aeds were phenobarbitone and depakote. > At the start of diet (Feb '00) inspite of too many cals > etc. he was free of sz for a month. > Then we started weaning pheno and he had a secondary > generalized sz the day after we finished. Next we had > a difficult time weaning dep with several sleep sz on > certain days after reducing the med. Since becoming > drug-free he started daytime sz again but concentration, > mood etc. improved and the no: of sz/month was also > marginally better. > However last month he had more sz than when on AEds > (mostly in the night). This month we got rid of night sz > by stopping vit E (given at night) and had a couple of fairly > good days. Then last Tuesday he forgot to take his cream > and oil at school, we continued with 2.1:1 ratio as normal > for dinner, and the ketones went high and he had 4 night sz. > Since then he has been having night sz ( ketones at night > 6-8 and mornings 0.5). For the last 4 days he has been > v.daydreamy/distracted and can't remember things and also > angry at times - just like when he was on high doses of drugs!! > I just don't know what's happening - HAS ANYONE SEEN > SOMETHING LIKE THIS ?? Could it be the night sz are > wiping him out? or is it a passing phase and some AEDs > are coming out of his system now after so many months? > Or his condition is deteriorating? I know I should see his Dr. > They'll just want to put him back on some drug - has been wanting > to even before we finished weaning. Results of tests done over > a month ago are not back. Rohan hates the idea of going on > AEDs again. I could bear going on even if the no: sz are > slightly more if he's better in himself (as he was till a few days > ago) > He has more sz on moderate to high ketones. Can't tolerate > oils much- makes him tired and yawny. He also seems to have > some digestive problems - horrid breath and v.stinky stools. > We've been giving him digestive enzymes on and off since > last month. > If anything occurs to anybody I'd be v.interested. > Thanks > Saro....Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 {{{{{{{{{{{{{{{SARO}}}}}}}}}}}}}}}}}} Praying for you............love, Deb > Hi Listmates, > I just thought I'd give an update on my son Rohan. > He's 12 yrs old and been free of drugs for 5 months. > The last two Aeds were phenobarbitone and depakote. > At the start of diet (Feb '00) inspite of too many cals > etc. he was free of sz for a month. > Then we started weaning pheno and he had a secondary > generalized sz the day after we finished. Next we had > a difficult time weaning dep with several sleep sz on > certain days after reducing the med. Since becoming > drug-free he started daytime sz again but concentration, > mood etc. improved and the no: of sz/month was also > marginally better. > However last month he had more sz than when on AEds > (mostly in the night). This month we got rid of night sz > by stopping vit E (given at night) and had a couple of fairly > good days. Then last Tuesday he forgot to take his cream > and oil at school, we continued with 2.1:1 ratio as normal > for dinner, and the ketones went high and he had 4 night sz. > Since then he has been having night sz ( ketones at night > 6-8 and mornings 0.5). For the last 4 days he has been > v.daydreamy/distracted and can't remember things and also > angry at times - just like when he was on high doses of drugs!! > I just don't know what's happening - HAS ANYONE SEEN > SOMETHING LIKE THIS ?? Could it be the night sz are > wiping him out? or is it a passing phase and some AEDs > are coming out of his system now after so many months? > Or his condition is deteriorating? I know I should see his Dr. > They'll just want to put him back on some drug - has been wanting > to even before we finished weaning. Results of tests done over > a month ago are not back. Rohan hates the idea of going on > AEDs again. I could bear going on even if the no: sz are > slightly more if he's better in himself (as he was till a few days > ago) > He has more sz on moderate to high ketones. Can't tolerate > oils much- makes him tired and yawny. He also seems to have > some digestive problems - horrid breath and v.stinky stools. > We've been giving him digestive enzymes on and off since > last month. > If anything occurs to anybody I'd be v.interested. > Thanks > Saro....Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Nan, Sev and Rohan certainly seem v.hard to figure out. Apart from the B6, do you give Sev any other supplements? I am trying hard to stick to the 'one thing at a time' rule., and trying to give time for things to settle down. These days when ketones go high in the evenings, I've been giving OJ and a lower ratio for dinner - but hasn't helped. It certainly worked during the dep wean, though. I wonder if a sudden fluctuation in ketones is bad as well -think someone mentioned it recently. I'm glad your holiday went well apart from the one sz. Btw, Sev looks cute and so do the others. Saro nanett prausa wrote: > Saro... > > Sev has these good and bad spells as well. I never know for sure if > what > I'm doing is the cause or if it is just a coincidence. Pretty much > the only > things I know for sure about Sev at this point is: > 1. He's much better off on the diet than he was on the meds...more > alert, > fewer seizures. One thing that bothers me though is that he had never > had a > grand mal prior to the diet...they started about a month into it. He > had > begun having the long (15-30 minutes) starey partials before the diet, > so > possibly he was moving towards the grand mals anyway, but I'll never > know. > 2. Even moderate ketones increases his seizures. I think even small > does > though I was not really successful at maintaining small long enough to > know. > He'd either go negative or back up to moderate. > > I thought he did better with fewer oils, but this past week camping, > he > mostly had bottles with the RCF...lots of oils and he had decent > control...only the one I mentioned before. So now I'm confused on > that > point too. I really think Sev's body just craves change. If I settle > into > anything too long, he goes beserk. Like I said, he's the classic > honeymoon > kid...we'll get a good week or two out of most changes, then it begins > to > fall apart. I wish someone knew why certain systems seem to adapt to > things > so quickly and then rebel against them? > > Given all of this, we are certainly staying on the diet. I know you > feel > the same way, but I wonder about the day when I can't find the next > change > that helps. I'd give Rohan a good week before deciding to do anything > > drastic. Maybe he's fighting a little infection. Maybe something the > osteopath is doing is making some progress under the whole 'darkest > before > the dawn' theory. I know it's hard not to be actively doing something > when > it seems like things are falling apart, but sometimes that's the best > solution. If I had given Sev the zonegran when things were at their > darkest > before the vacation, I would've thought the zonegran was responsible > for his > good control on vacation. I really believe now that two weeks is the > best > time to wait before making a change. Try to hold tight and see if he > comes > around. Since he does poorly on the higher ketones, maybe give some > OJ > before bed and see if that keeps them down during the night. Just try > to > get through the next week and give yourself some time to think and > mull > things over. I'll be praying for you and Rohan. I know how hard it > is to > feel helpless when you are trying so hard. You must be > exhausted...try to > get some rest. Love, Nan > > > ----Original Message Follows---- > > Reply-To: ketogenic > To: ketogenic > Subject: Re: Rohan - Update > Date: Mon, 11 Jun 2001 13:45:59 +0100 > > Nan, > Thank you v.much for your thoughts. I've been thinking > along the same lines. Last night Rohan had sz coming > every 10mts or so, gave 10mg r.diazipam twice in 20mts > with no effect on sz, except making him too groggy to wake > up. We tried to give him some depakote -yes it's true , > as a desperate measure, but couldn't get him awake to > swallow. In the end when a sz was starting, we pulled him > up to a sitting position rubbed his ears and talked to him > and managed to avert two of them becoming full-blown. > > This very thing happened over an year ago when he first > started the diet. He'd been free of depakote for about 3 > weeks by then, because his Dr. stopped it all at once before > the diet. He had sleep sz every few mts (26 one night, where > diazipam didn't work) but was OK when awake. Then his > Dr. put 3/4 of the depakote back, and it stopped the sleep-sz. > The sz free month happened after that. Depakote on its own > or with other AEDs hadn't helped Rohan before, but he was > put on it again after abandoning it 7 years ago, as it seemed > to have fewer side effects and his Drs thought it might help > in some combination with other AEDs. > My theory is, there must be still some dep hanging around > and ketones and it must be balanced. ie if level of dep is high > the ketones can be high without sz, but if the level of dep is > low the ketones must be correspondingly low (proved during > the wean). Currently ketones are high at night - probably > because of the d.enzymes. I think the problem with vit E > was also that it made the ketones higher. Whatever the cause, > high ketones are bad news for Rohan! I think d.enzymes > could have been helping the digestive problems but after > a week or so, things go bad due to high ketones. However > when I try to decrease the ratio below 2, he has more > stopping/freezing incidents and any generalized sz are more > prolonged. > So after much confused thinking round and round, decided to > stick to 2.1 and stop d.enzymes. I'm more confused about the > 'dazed' behaviour the last four days or so. In March Rohan > was so with it at school - got 96% in a maths test (the highest > in his group) and was put into gp A, but now he seems 'not > to be there at times'. > Sorry for the lenthy reply - it helped me to put my thoughts > together. > Saro > > nanett prausa wrote: > > > Saro... > > > > I know this is a scary thought, but what about going even lower on > the > > > > ratio. If he's 6-8 at night, maybe it's still just too high for him. > > > I seem > > to remember though that you had more stares (?) when you went > > lower??? I > > know that the month free at the beginning is such a strong lure, > > especially > > since he feels so much better med free. Sometimes though, I feel > like > > I'm > > chasing a dream, and Sev gives me just enough fuel (good times) to > > keep me > > chasing. I say as long as he feels better, even if the seizures are > > > the > > same, keep trying. If he continues to not feel as well, maybe it's > > time to > > consider the diet in combination with a low dose of a med. Not > pheno > > or > > depakote or topamax, but maybe neurontin? It didn't effect Sev very > > > much > > and they seem similiar. He actually seemed to have some cognitive > > improvements as well as improved vision on it. It just didn't > control > > his > > seizures. I know this is such a horrid thought, but if he continues > to > > have > > these hazy days, it might be worth thinking about. Quality of life > is > > the > > issue...I've taken to looking at the zonegran package more often, > > kinda > > getting used to it if that's what it comes to get Sev's quality of > > life back > > up. Thankfully he's on the upswing again and I can quit looking at > it > > for > > awhile...I really thought it was even an ugly package! Anyway...I > > know > > struggle you are facing. Hang in there and know that many of us are > > > so > > impressed with your efforts to help Rohan..you put so much time and > > energy > > in to helping him...someday it'll pay off! Nan > > > > > > ----Original Message Follows---- > > > > Reply-To: ketogenic > > To: ketolist <ketogenic > > > Subject: Rohan - Update > > Date: Sun, 10 Jun 2001 23:19:02 +0100 > > > > Hi Listmates, > > I just thought I'd give an update on my son Rohan. > > He's 12 yrs old and been free of drugs for 5 months. > > The last two Aeds were phenobarbitone and depakote. > > At the start of diet (Feb '00) inspite of too many cals > > etc. he was free of sz for a month. > > Then we started weaning pheno and he had a secondary > > generalized sz the day after we finished. Next we had > > a difficult time weaning dep with several sleep sz on > > certain days after reducing the med. Since becoming > > drug-free he started daytime sz again but concentration, > > mood etc. improved and the no: of sz/month was also > > marginally better. > > However last month he had more sz than when on AEds > > (mostly in the night). This month we got rid of night sz > > by stopping vit E (given at night) and had a couple of fairly > > good days. Then last Tuesday he forgot to take his cream > > and oil at school, we continued with 2.1:1 ratio as normal > > for dinner, and the ketones went high and he had 4 night sz. > > Since then he has been having night sz ( ketones at night > > 6-8 and mornings 0.5). For the last 4 days he has been > > v.daydreamy/distracted and can't remember things and also > > angry at times - just like when he was on high doses of drugs!! > > I just don't know what's happening - HAS ANYONE SEEN > > SOMETHING LIKE THIS ?? Could it be the night sz are > > wiping him out? or is it a passing phase and some AEDs > > are coming out of his system now after so many months? > > Or his condition is deteriorating? I know I should see his Dr. > > They'll just want to put him back on some drug - has been wanting > > to even before we finished weaning. Results of tests done over > > a month ago are not back. Rohan hates the idea of going on > > AEDs again. I could bear going on even if the no: sz are > > slightly more if he's better in himself (as he was till a few days > > ago) > > He has more sz on moderate to high ketones. Can't tolerate > > oils much- makes him tired and yawny. He also seems to have > > some digestive problems - horrid breath and v.stinky stools. > > We've been giving him digestive enzymes on and off since > > last month. > > If anything occurs to anybody I'd be v.interested. > > Thanks > > Saro....Rohan's mum > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Nan, Sev and Rohan certainly seem v.hard to figure out. Apart from the B6, do you give Sev any other supplements? I am trying hard to stick to the 'one thing at a time' rule., and trying to give time for things to settle down. These days when ketones go high in the evenings, I've been giving OJ and a lower ratio for dinner - but hasn't helped. It certainly worked during the dep wean, though. I wonder if a sudden fluctuation in ketones is bad as well -think someone mentioned it recently. I'm glad your holiday went well apart from the one sz. Btw, Sev looks cute and so do the others. Saro nanett prausa wrote: > Saro... > > Sev has these good and bad spells as well. I never know for sure if > what > I'm doing is the cause or if it is just a coincidence. Pretty much > the only > things I know for sure about Sev at this point is: > 1. He's much better off on the diet than he was on the meds...more > alert, > fewer seizures. One thing that bothers me though is that he had never > had a > grand mal prior to the diet...they started about a month into it. He > had > begun having the long (15-30 minutes) starey partials before the diet, > so > possibly he was moving towards the grand mals anyway, but I'll never > know. > 2. Even moderate ketones increases his seizures. I think even small > does > though I was not really successful at maintaining small long enough to > know. > He'd either go negative or back up to moderate. > > I thought he did better with fewer oils, but this past week camping, > he > mostly had bottles with the RCF...lots of oils and he had decent > control...only the one I mentioned before. So now I'm confused on > that > point too. I really think Sev's body just craves change. If I settle > into > anything too long, he goes beserk. Like I said, he's the classic > honeymoon > kid...we'll get a good week or two out of most changes, then it begins > to > fall apart. I wish someone knew why certain systems seem to adapt to > things > so quickly and then rebel against them? > > Given all of this, we are certainly staying on the diet. I know you > feel > the same way, but I wonder about the day when I can't find the next > change > that helps. I'd give Rohan a good week before deciding to do anything > > drastic. Maybe he's fighting a little infection. Maybe something the > osteopath is doing is making some progress under the whole 'darkest > before > the dawn' theory. I know it's hard not to be actively doing something > when > it seems like things are falling apart, but sometimes that's the best > solution. If I had given Sev the zonegran when things were at their > darkest > before the vacation, I would've thought the zonegran was responsible > for his > good control on vacation. I really believe now that two weeks is the > best > time to wait before making a change. Try to hold tight and see if he > comes > around. Since he does poorly on the higher ketones, maybe give some > OJ > before bed and see if that keeps them down during the night. Just try > to > get through the next week and give yourself some time to think and > mull > things over. I'll be praying for you and Rohan. I know how hard it > is to > feel helpless when you are trying so hard. You must be > exhausted...try to > get some rest. Love, Nan > > > ----Original Message Follows---- > > Reply-To: ketogenic > To: ketogenic > Subject: Re: Rohan - Update > Date: Mon, 11 Jun 2001 13:45:59 +0100 > > Nan, > Thank you v.much for your thoughts. I've been thinking > along the same lines. Last night Rohan had sz coming > every 10mts or so, gave 10mg r.diazipam twice in 20mts > with no effect on sz, except making him too groggy to wake > up. We tried to give him some depakote -yes it's true , > as a desperate measure, but couldn't get him awake to > swallow. In the end when a sz was starting, we pulled him > up to a sitting position rubbed his ears and talked to him > and managed to avert two of them becoming full-blown. > > This very thing happened over an year ago when he first > started the diet. He'd been free of depakote for about 3 > weeks by then, because his Dr. stopped it all at once before > the diet. He had sleep sz every few mts (26 one night, where > diazipam didn't work) but was OK when awake. Then his > Dr. put 3/4 of the depakote back, and it stopped the sleep-sz. > The sz free month happened after that. Depakote on its own > or with other AEDs hadn't helped Rohan before, but he was > put on it again after abandoning it 7 years ago, as it seemed > to have fewer side effects and his Drs thought it might help > in some combination with other AEDs. > My theory is, there must be still some dep hanging around > and ketones and it must be balanced. ie if level of dep is high > the ketones can be high without sz, but if the level of dep is > low the ketones must be correspondingly low (proved during > the wean). Currently ketones are high at night - probably > because of the d.enzymes. I think the problem with vit E > was also that it made the ketones higher. Whatever the cause, > high ketones are bad news for Rohan! I think d.enzymes > could have been helping the digestive problems but after > a week or so, things go bad due to high ketones. However > when I try to decrease the ratio below 2, he has more > stopping/freezing incidents and any generalized sz are more > prolonged. > So after much confused thinking round and round, decided to > stick to 2.1 and stop d.enzymes. I'm more confused about the > 'dazed' behaviour the last four days or so. In March Rohan > was so with it at school - got 96% in a maths test (the highest > in his group) and was put into gp A, but now he seems 'not > to be there at times'. > Sorry for the lenthy reply - it helped me to put my thoughts > together. > Saro > > nanett prausa wrote: > > > Saro... > > > > I know this is a scary thought, but what about going even lower on > the > > > > ratio. If he's 6-8 at night, maybe it's still just too high for him. > > > I seem > > to remember though that you had more stares (?) when you went > > lower??? I > > know that the month free at the beginning is such a strong lure, > > especially > > since he feels so much better med free. Sometimes though, I feel > like > > I'm > > chasing a dream, and Sev gives me just enough fuel (good times) to > > keep me > > chasing. I say as long as he feels better, even if the seizures are > > > the > > same, keep trying. If he continues to not feel as well, maybe it's > > time to > > consider the diet in combination with a low dose of a med. Not > pheno > > or > > depakote or topamax, but maybe neurontin? It didn't effect Sev very > > > much > > and they seem similiar. He actually seemed to have some cognitive > > improvements as well as improved vision on it. It just didn't > control > > his > > seizures. I know this is such a horrid thought, but if he continues > to > > have > > these hazy days, it might be worth thinking about. Quality of life > is > > the > > issue...I've taken to looking at the zonegran package more often, > > kinda > > getting used to it if that's what it comes to get Sev's quality of > > life back > > up. Thankfully he's on the upswing again and I can quit looking at > it > > for > > awhile...I really thought it was even an ugly package! Anyway...I > > know > > struggle you are facing. Hang in there and know that many of us are > > > so > > impressed with your efforts to help Rohan..you put so much time and > > energy > > in to helping him...someday it'll pay off! Nan > > > > > > ----Original Message Follows---- > > > > Reply-To: ketogenic > > To: ketolist <ketogenic > > > Subject: Rohan - Update > > Date: Sun, 10 Jun 2001 23:19:02 +0100 > > > > Hi Listmates, > > I just thought I'd give an update on my son Rohan. > > He's 12 yrs old and been free of drugs for 5 months. > > The last two Aeds were phenobarbitone and depakote. > > At the start of diet (Feb '00) inspite of too many cals > > etc. he was free of sz for a month. > > Then we started weaning pheno and he had a secondary > > generalized sz the day after we finished. Next we had > > a difficult time weaning dep with several sleep sz on > > certain days after reducing the med. Since becoming > > drug-free he started daytime sz again but concentration, > > mood etc. improved and the no: of sz/month was also > > marginally better. > > However last month he had more sz than when on AEds > > (mostly in the night). This month we got rid of night sz > > by stopping vit E (given at night) and had a couple of fairly > > good days. Then last Tuesday he forgot to take his cream > > and oil at school, we continued with 2.1:1 ratio as normal > > for dinner, and the ketones went high and he had 4 night sz. > > Since then he has been having night sz ( ketones at night > > 6-8 and mornings 0.5). For the last 4 days he has been > > v.daydreamy/distracted and can't remember things and also > > angry at times - just like when he was on high doses of drugs!! > > I just don't know what's happening - HAS ANYONE SEEN > > SOMETHING LIKE THIS ?? Could it be the night sz are > > wiping him out? or is it a passing phase and some AEDs > > are coming out of his system now after so many months? > > Or his condition is deteriorating? I know I should see his Dr. > > They'll just want to put him back on some drug - has been wanting > > to even before we finished weaning. Results of tests done over > > a month ago are not back. Rohan hates the idea of going on > > AEDs again. I could bear going on even if the no: sz are > > slightly more if he's better in himself (as he was till a few days > > ago) > > He has more sz on moderate to high ketones. Can't tolerate > > oils much- makes him tired and yawny. He also seems to have > > some digestive problems - horrid breath and v.stinky stools. > > We've been giving him digestive enzymes on and off since > > last month. > > If anything occurs to anybody I'd be v.interested. > > Thanks > > Saro....Rohan's mum > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Hi Barb, martin wrote: > My theory is, there must be still some dep hanging around > and ketones and it must be balanced. ie if level of dep is high > the ketones can be high without sz, but if the level of dep is > low the ketones must be correspondingly low (proved during > the wean). > > Hey Saro.. > Sorry to read bout your recent seizures!!! I do agree with ya on the > depacrap, well > in part anyway...I was knocking around the idea with Opal that maybe > since Dep is > transported in the fats (the reason its contraindicated wit the diet) > that maybe somehow > its stored in the fats?? our theory is that eventually after weaning > (could be several months) > that you get into the fat stores containing the remaining dep??? and > see those weaning > seizures return! I donno about the corresponding ketone level...I > know most kids have had > to reduce ratios with dep, but Bry could never get to high ketones so > we never had that > experience. When did you finish weaning Dep?? our return of the > withdrawels happened > about 3 months later. Sleep sz (just as when weaning the depacrap) started 4 months after stopping dep and have become worse now, just after 5 months. The ones two nights ago, that came 10 mts apart and were not stopped by r.diazipam happen only in sleep, and stop if we can get him awake. This happened at the start of the diet (the depakote had been stopped 3 weeks earlier) and was only helped by putting 3/4 of the depakote back. I know this type of sz is definitely to do with the depacrap. Though it stopped these type of sz, with the diet on board, dep hadn't helped before, to stop sz. > > Currently ketones are high at night - probably > because of the d.enzymes. I think the problem with vit E > was also that it made the ketones higher. Whatever the cause, > high ketones are bad news for Rohan! > > I donno.... I think it was and Jess had a problem with > digestive enzymes > but If I remember right it was from decreased acidity?? I highly > recommend the > enzymes! what kind are you using?? on the E what kind are you > using?? I was > told to make sure to use mixed Tocopherols...in english....there are > several different > forms of e and you need to be sure its not the dl (synthetic form) > could be diluted with > rancid oils too...Twin labs makes a mixed dry e (no carbs) that has > the d-alpha, D beta, > ect...but currently im using one dr recommended by A. C. Grace called > Unique E. its700 > mgs which Bry gets twice daily. C and E are extremely important > antioxidants necessary > with this diet!! there are even studies on E and seizures too! I > would look into this > further! Bry takes 2000 C daily and 1400 e daily The d.enzymes from Solgar - dibasic cal. phosphate ox-bile extract pancreatin aspergillus oryzae diastase betaine HCL papain pesin extract Vit E (solgar) Dry containing d-alpha tocopheryl succinate prep. We only had a few good days and this was on stopping vit E. Now things are bad again and ketones are up at night. Both vit E and d.e seem to increase ketones. I know these things are supposed to be good, but Rohan's response seems to be bad. It's the same with flax - only 0.5g makes him yawny and tired. I have tried going lower than 2 on the ratio to reduce the ketones but he has lots of absence like sz and the generalized ones last longer. When did 's withdrwal type sz that came after 3 months, stop? If what Rohan's going through is that type - hopefully they'll stop and we can gradually put back the supplements. Thanks for the helpful info. Keep us posted about 's progress. Saro....Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Hi Barb, martin wrote: > My theory is, there must be still some dep hanging around > and ketones and it must be balanced. ie if level of dep is high > the ketones can be high without sz, but if the level of dep is > low the ketones must be correspondingly low (proved during > the wean). > > Hey Saro.. > Sorry to read bout your recent seizures!!! I do agree with ya on the > depacrap, well > in part anyway...I was knocking around the idea with Opal that maybe > since Dep is > transported in the fats (the reason its contraindicated wit the diet) > that maybe somehow > its stored in the fats?? our theory is that eventually after weaning > (could be several months) > that you get into the fat stores containing the remaining dep??? and > see those weaning > seizures return! I donno about the corresponding ketone level...I > know most kids have had > to reduce ratios with dep, but Bry could never get to high ketones so > we never had that > experience. When did you finish weaning Dep?? our return of the > withdrawels happened > about 3 months later. Sleep sz (just as when weaning the depacrap) started 4 months after stopping dep and have become worse now, just after 5 months. The ones two nights ago, that came 10 mts apart and were not stopped by r.diazipam happen only in sleep, and stop if we can get him awake. This happened at the start of the diet (the depakote had been stopped 3 weeks earlier) and was only helped by putting 3/4 of the depakote back. I know this type of sz is definitely to do with the depacrap. Though it stopped these type of sz, with the diet on board, dep hadn't helped before, to stop sz. > > Currently ketones are high at night - probably > because of the d.enzymes. I think the problem with vit E > was also that it made the ketones higher. Whatever the cause, > high ketones are bad news for Rohan! > > I donno.... I think it was and Jess had a problem with > digestive enzymes > but If I remember right it was from decreased acidity?? I highly > recommend the > enzymes! what kind are you using?? on the E what kind are you > using?? I was > told to make sure to use mixed Tocopherols...in english....there are > several different > forms of e and you need to be sure its not the dl (synthetic form) > could be diluted with > rancid oils too...Twin labs makes a mixed dry e (no carbs) that has > the d-alpha, D beta, > ect...but currently im using one dr recommended by A. C. Grace called > Unique E. its700 > mgs which Bry gets twice daily. C and E are extremely important > antioxidants necessary > with this diet!! there are even studies on E and seizures too! I > would look into this > further! Bry takes 2000 C daily and 1400 e daily The d.enzymes from Solgar - dibasic cal. phosphate ox-bile extract pancreatin aspergillus oryzae diastase betaine HCL papain pesin extract Vit E (solgar) Dry containing d-alpha tocopheryl succinate prep. We only had a few good days and this was on stopping vit E. Now things are bad again and ketones are up at night. Both vit E and d.e seem to increase ketones. I know these things are supposed to be good, but Rohan's response seems to be bad. It's the same with flax - only 0.5g makes him yawny and tired. I have tried going lower than 2 on the ratio to reduce the ketones but he has lots of absence like sz and the generalized ones last longer. When did 's withdrwal type sz that came after 3 months, stop? If what Rohan's going through is that type - hopefully they'll stop and we can gradually put back the supplements. Thanks for the helpful info. Keep us posted about 's progress. Saro....Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Saro... I really don't have Sev on any other supplements...he reacts so strangely to everything! He gets a bottle of formula each day, and that gives him a good dose of nutrients. Other than that, I try to get as much nutrition in his diet as I can. He's just had such weird reactions to everything...trace minerals, digestive enzymes, oils...I have just quit trying until now! Nan _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Saro... I really don't have Sev on any other supplements...he reacts so strangely to everything! He gets a bottle of formula each day, and that gives him a good dose of nutrients. Other than that, I try to get as much nutrition in his diet as I can. He's just had such weird reactions to everything...trace minerals, digestive enzymes, oils...I have just quit trying until now! Nan _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 WOW.........Nate's calories are 1530 and he only weighs 21kg! Sometimes I don't remember how lucky we are! Love, D > Rohan's calories are 1560 and weight 42kg > Saro Quote Link to comment Share on other sites More sharing options...
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