Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Sorry it took so long to respond. She does take the depakote at bedtime. She is in school(when feelong ok) until 300 so she takes it at breakfast at 7:00 ,3:00-and at 7:30pm. Her level was at 100 prior to going on Topamax which had to be stopped for the diet. Now her level is at 74 on the same amount of med and the diet . I wanted to know if anyone found that they needed more depakote-when startedon the diet to maintain their levels? She is still having seizures at night. Now mostly in the middle of the night or early morning. She is on 4:1 tith 3 meals a day. Her ketone s are always high but we are discouraged about the seizures at night. Any thoughts would be appreciated. Thanks!!!!!!!!- In ketogenic , " & Hill " wrote: > Although falling asleep can be a time when seizures are more likely, (has she always had them at this time?) it could also be the effect of higher night ketones in conjunction with her nightly depakote dose, sort of like an 'overload' when the 2 are combined - if she has a nightly dep dose that is.... > When was on a level of depakote that he couldn't cope with in conjunction with ketosis, we used to see seizures approx 90 mins after taking the med, as it peaked in other words. One way to see if this is the problem, is to try and change the dosing times slightly temporarily and see if the time the seizures start changes as well. This was how we found out the problem with , so his was a fairly simple one to solve (well simple compared to the other med/seizure problems we have had with him on the diet). > If not that, then are her ketones going too high or too low at night perhaps? Do you test blood or urine ketones? What sort of range are you seeing? > > > ----- Original Message ----- > From: lmvassil > > > > Hello! My daughter almost six now started having seizures in Jan > 2004. She failed numerous meds and was started on the keto diet 3 > weeks ago. She has Primary generalized Epilepsy. She is currently > on depakote only. She is still having seizures at night. Some just > after falling asleep. Has anyone else had trouble controlling > nightime seizures? Have the kids needed more or less depakote once > starting the diet in order to keep their levels up? Her seizures were > clustered about every two weeks now they are shorter in duration but > almost every night. How long until results were seen? > > > > > > " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 It is usually better to have 2 or 3 snacks a day in addition to regular meals. It does mean recalculating meals. Many people find that the diet works better without depakote. You might want to try slowly weaning it. Sometimes if ketones are too high at night, children have seizures on going to sleep. It means experimenting with giving a bit of juice at bedtime to cut the ketones. Sometimes if ketones are too low in the morning, children have seizures on or before waking. It means adding a snack at bedtime, often at a higher ratio to raise overnight ketones. It will take some trial and error to determine the right things to do. Bill lmvassil wrote: > > Sorry it took so long to respond. She does take the depakote at > bedtime. She is in school(when feelong ok) until 300 so she takes it > at breakfast at 7:00 ,3:00-and at 7:30pm. Her level was at 100 prior > to going on Topamax which had to be stopped for the diet. Now her > level is at 74 on the same amount of med and the diet . I wanted to > know if anyone found that they needed more depakote-when startedon > the diet to maintain their levels? She is still having seizures at > night. Now mostly in the middle of the night or early morning. She is > on 4:1 tith 3 meals a day. Her ketone s are always high but we are > discouraged about the seizures at night. Any thoughts would be > appreciated. Thanks!!!!!!!!- In ketogenic , " & Hill " wrote: > >> Although falling asleep can be a time when seizures are more > > likely, (has she always had them at this time?) it could also be the > effect of higher night ketones in conjunction with her nightly > depakote dose, sort of like an 'overload' when the 2 are combined - > if she has a nightly dep dose that is.... > >> When was on a level of depakote that he couldn't cope with > > in conjunction with ketosis, we used to see seizures approx 90 mins > after taking the med, as it peaked in other words. One way to see if > this is the problem, is to try and change the dosing times slightly > temporarily and see if the time the seizures start changes as well. > This was how we found out the problem with , so his was a > fairly simple one to solve (well simple compared to the other > med/seizure problems we have had with him on the diet). > >> If not that, then are her ketones going too high or too low at > > night perhaps? Do you test blood or urine ketones? What sort of range > are you seeing? > >> >> ----- Original Message ----- >> From: lmvassil >> >> >> >> Hello! My daughter almost six now started having seizures in > > Jan > >> 2004. She failed numerous meds and was started on the keto > > diet 3 > >> weeks ago. She has Primary generalized Epilepsy. She is > > currently > >> on depakote only. She is still having seizures at night. Some > > just > >> after falling asleep. Has anyone else had trouble controlling >> nightime seizures? Have the kids needed more or less depakote > > once > >> starting the diet in order to keep their levels up? Her > > seizures were > >> clustered about every two weeks now they are shorter in > > duration but > >> almost every night. How long until results were seen? >> >> >> >> >> >> " >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Hmm, well re the depakote/topmax interaction, as far as I am aware depakote can lower topomax levels, so by weaning dep you would increase topomax - perhaps when doing it the other way round like you have, the opp happens - ie - taking topomax away lowers dep or something?? Or - Depakote and the diet do have a metabolic fatty acid competition thing happening according to Dr De Vivo (metabolic neurologist), perhaps in your daughter's case, the diet is currently winning the battle? If the seizures are not occurring like 's did as the dep dose peaks, then perhaps either she is having some (possibly temporary) withdrawal reaction to lower depakote blood levels that may abate with time, or it is a diet issue that may need a different meal spacing or cal adjustment to sort out. I guess you could try increasing the depakote to see if that knocks the remaining seizures on the head, if no difference, then perhaps try the opp, wean it (esp the higher amount added before she gets too used to it) and see if she fares better off meds altogether - as you will have gathered by reading posts on here, soemtimes this is actially needed before full control is gained, ----- Original Message ----- From: lmvassil Sorry it took so long to respond. She does take the depakote at bedtime. She is in school(when feelong ok) until 300 so she takes it at breakfast at 7:00 ,3:00-and at 7:30pm. Her level was at 100 prior to going on Topamax which had to be stopped for the diet. Now her level is at 74 on the same amount of med and the diet . I wanted to know if anyone found that they needed more depakote-when startedon the diet to maintain their levels? She is still having seizures at night. Now mostly in the middle of the night or early morning. She is on 4:1 tith 3 meals a day. Her ketone s are always high but we are discouraged about the seizures at night. Any thoughts would be appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
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