Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Tracey has recently had a bout with reoccuring seizures and no diet changes. The only culprit has been constipation and the more constipated he gets, the more seizures. This am he had 10 head drops which is more than he has had in a cluster in 3 or 4 years. I hate those nasty buggers. We have recently added magnesium and that seems to help along with Probiotics for his stomach. I gave him a suppository tonight and am going to increase his magnesium tommorrow. Its just trial and error. Lots of luck to you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Tracey has recently had a bout with reoccuring seizures and no diet changes. The only culprit has been constipation and the more constipated he gets, the more seizures. This am he had 10 head drops which is more than he has had in a cluster in 3 or 4 years. I hate those nasty buggers. We have recently added magnesium and that seems to help along with Probiotics for his stomach. I gave him a suppository tonight and am going to increase his magnesium tommorrow. Its just trial and error. Lots of luck to you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Tracey has recently had a bout with reoccuring seizures and no diet changes. The only culprit has been constipation and the more constipated he gets, the more seizures. This am he had 10 head drops which is more than he has had in a cluster in 3 or 4 years. I hate those nasty buggers. We have recently added magnesium and that seems to help along with Probiotics for his stomach. I gave him a suppository tonight and am going to increase his magnesium tommorrow. Its just trial and error. Lots of luck to you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Don't think it works directly on ketones, but it sure seems to have been shown to increase seizures? Sorry, don't know about your nuts question tflourie@... wrote: > Will constipation cause a decrease in ketones an > increase in seizures?> > Skyler is NEVER constipated (he's on the MCT version of the > diet)...but now > hasn't pooped in a few days. Today we saw some facial twitching which > I just > *know* was seizure activity. > > Are nuts constipating?? > > Thanks. > Tracey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Don't think it works directly on ketones, but it sure seems to have been shown to increase seizures? Sorry, don't know about your nuts question tflourie@... wrote: > Will constipation cause a decrease in ketones an > increase in seizures?> > Skyler is NEVER constipated (he's on the MCT version of the > diet)...but now > hasn't pooped in a few days. Today we saw some facial twitching which > I just > *know* was seizure activity. > > Are nuts constipating?? > > Thanks. > Tracey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Don't think it works directly on ketones, but it sure seems to have been shown to increase seizures? Sorry, don't know about your nuts question tflourie@... wrote: > Will constipation cause a decrease in ketones an > increase in seizures?> > Skyler is NEVER constipated (he's on the MCT version of the > diet)...but now > hasn't pooped in a few days. Today we saw some facial twitching which > I just > *know* was seizure activity. > > Are nuts constipating?? > > Thanks. > Tracey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Nuts are constipating if too many are given, I know personally and from Stella, if I give her too many macadamia nuts she gets clogged. Try the free lettuce, and remember to give lots of water. With Stella, if she gets to much cheese she gets clogged. I use grapeseed oil and it has helped a lot, i substitute that when cooking and alternate w/ macadamia nut oil and olive oil. Adding the magnesium may help too, if worst case scenerio, try colace, it's a softener so it should not cause any discomfort. We've also used M.O.M, but Stella has stomach issues with that. I know Stella's urine is always very concentrated, so we ignore the limited fluids, maybe that is an issue for your son. If you are still using MÇT oil, there may be another problem. We had to quit the MCT oil version as it made her way too ketotic,and she was vomiting. I hope you find some success soon, the constipation really stinks!!! (literally too) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Constipation definitely interferes with the diet, decreases ketones and can cause seizures. (Vomiting too). The ketogenic diet is constipating; not sure about nuts. Bill tflourie@... wrote: > Will constipation cause a decrease in ketones increase in seizures?> > Skyler is NEVER constipated (he's on the MCT version of the diet)...but now > hasn't pooped in a few days. Today we saw some facial twitching which I just > *know* was seizure activity. > > Are nuts constipating?? > > Thanks. > Tracey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Thanks, Bill. My kid went from a regular once a day pooper...to no BM's for up to 3 days and sz have skyrocketed (and he's on the MCT Oil version of the diet!!) Neuro suggests M.o.M. Can I expect, then, do you think, that once he returns to 'regularity,' that the seizures might settle down? Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 In a message dated 9/1/2004 10:09:07 AM Pacific Daylight Time, torontobarber@... writes: How are the ketone levels? All over the place!! We don't pay much mind to urine ketones--which are always high. So we measure blood ketones when seizures go whacky. Last week, e.g., he had very low blood levels in the morning (like 1.3) and off-the chart levels (+6.0) by evening. Honestly, it's as if the diet suddenly quit working overnight. Skyler's seizures (all nocturnal) had been down to 0-3 and are now 20+/night. We're engaged in a very slow phenobarb wean and thought that might be the culprit. With every wean, we are used to seeing a 3-4 night increase in sz, and then things have always settled back down. We ran levels this week to see if we might have finally landed on a sub-therapeutic dose...but that was not the case at all: In fact, his level has barely fallen despite having dropped nearly 50 mg of phenobarb. I am completely at odds as to what has happened and what to do. These horrid, wretched nights are killing us both. At this point, I'd like to blame constipation...but who knows. ANY advice/suggestions/opinions would be warmly welcomed and appreciated. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Tracey, try a little colace too, it may help soften the stools if they are really hard, the MCT did nothing for STella's stools either but the colace helps some so she's not crying in pain. amanda -- http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Regularity may settle down seizures. How are the ketone levels? You may have to experiment with other oils or vary the ratio or calories during fine tuning. Bill tflourie@... wrote: > Thanks, Bill. My kid went from a regular once a day pooper...to no BM's for > up to 3 days and sz have skyrocketed (and he's on the MCT Oil version of the > diet!!) Neuro suggests M.o.M. > Can I expect, then, do you think, that once he returns to 'regularity,' that > the seizures might settle down? > Tracey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 , I feel for you! We had a similar thing last month and despaired, even got a prescription for a new med! Medications and the diet can interfere with each other. Sub-therapeutic means little when both are operating and more so if there are withdrawal seizures. It isn't surprising that you are seeing more seizures with a wean. Many of these drugs are stored in the body's tissues and it can take a long time to wean them. Go slow. Be patient. I know; nearly impossible task. Anything seems to be possible on a drug wean, mostly bad. My only thought would be that the high night ketones might be actually causing seizures. Who knows? Maybe try giving some apple juice at bedtime and see if the ketones drop a bit and if the seizures are less. We got a prescription for ativan (sublingual) for those very bad nights. I don't know whether it helped or not; possibly. Bill tflourie@... wrote: > In a message dated 9/1/2004 10:09:07 AM Pacific Daylight Time, > torontobarber@... writes: > > How are the ketone levels? > > > All over the place!! We don't pay much mind to urine ketones--which are > always high. So we measure blood ketones when seizures go whacky. Last week, > e.g., he had very low blood levels in the morning (like 1.3) and off-the chart > levels (+6.0) by evening. > Honestly, it's as if the diet suddenly quit working overnight. > Skyler's seizures (all nocturnal) had been down to 0-3 and are now 20+/night. > > We're engaged in a very slow phenobarb wean and thought that might be the > culprit. With every wean, we are used to seeing a 3-4 night increase in sz, > and then things have always settled back down. We ran levels this week to see > if we might have finally landed on a sub-therapeutic dose...but that was not > the case at all: In fact, his level has barely fallen despite having > dropped nearly 50 mg of phenobarb. > > I am completely at odds as to what has happened and what to do. These > horrid, wretched nights are killing us both. At this point, I'd like to blame > constipation...but who knows. > > ANY advice/suggestions/opinions would be warmly welcomed and appreciated. > Tracey > > > Quote Link to comment Share on other sites More sharing options...
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