Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Well, I'm in shock after Denis' latest eeg experience. Denis takes 1,500 mg of Vigabatrin and finished hormone therapy this fall. We started him on the keto diet in October. Before starting the diet, we did two eegs, both of which showed no seizure activity. Denis has done great with the diet. Ketones are always high and we have seen absolutely no signs of seizure activity. Last Friday Denis went for his first check-up and we had another eeg. At the time, Denis was suffering from major constipation (our only problem associated with the diet) and was extremely agitated (I think he was trying to pass a stool.) He squirmed and wiggled throughout the eeg and did a lot of vocalizing. I assumed the whole experience was a wash, so I was shocked when the technician told us that Denis had actually been sleeping for 30 minutes and that his eeg showed the return of hypsarrithmia! During the time he was supposedly asleep, Denis continued to wriggle, vocalize and open and shut his eyes every minute or so. My questions are these: 1) Can the keto diet cause an eeg to worsen? (We made no other changes to Denis' meds in the time period between eegs) 2) Can Denis have hypsarrithmia without any outward sign of seizures? (Believe me, we look for them like hawks!) 3)Could constipation have caused abnormal brain wave activity to return? 4) Could Denis' wriggling have affected the eeg results? Sorry for this long message but I'm completely thrown for a loop here and I don't know when the doctor will look at the eeg and respond. --Kasey, mother of Denis, 2.5 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 I don't have any direct experience on the diet and eeg's. Our daughter has always had over 90% of the time, seizure brain activity. That didn't change on the diet. What is often reported is that the med levels can be toxic when combined with the diet. We found personally that the diet changed how the medication worked and its affects. So, I would conclude that the diet could affect the eeg through the change in the way the medication affects the body and the brain. Constipation is a high stress for the body and we often get seizures because of it. Constipation also messes up the diet because of the negative affect on digestioin. The diet depends on proper digestion. kcv wrote: > > Well, I'm in shock after Denis' latest eeg experience. Denis takes > 1,500 mg of Vigabatrin and finished hormone therapy this fall. We > started him on the keto diet in October. Before starting the diet, we > did two eegs, both of which showed no seizure activity. Denis has > done great with the diet. Ketones are always high and we have seen > absolutely no signs of seizure activity. > > Last Friday Denis went for his first check-up and we had another eeg. > At the time, Denis was suffering from major constipation (our only > problem associated with the diet) and was extremely agitated (I think > he was trying to pass a stool.) He squirmed and wiggled throughout > the eeg and did a lot of vocalizing. I assumed the whole experience > was a wash, so I was shocked when the technician told us that Denis > had actually been sleeping for 30 minutes and that his eeg showed the > return of hypsarrithmia! During the time he was supposedly asleep, > Denis continued to wriggle, vocalize and open and shut his eyes every > minute or so. > > My questions are these: > 1) Can the keto diet cause an eeg to worsen? (We made no other > changes to Denis' meds in the time period between eegs) > 2) Can Denis have hypsarrithmia without any outward sign of seizures? > (Believe me, we look for them like hawks!) > 3)Could constipation have caused abnormal brain wave activity to > return? > 4) Could Denis' wriggling have affected the eeg results? > > Sorry for this long message but I'm completely thrown for a loop here > and I don't know when the doctor will look at the eeg and respond. > > --Kasey, mother of Denis, 2.5 years > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Dear Kasey My first surprise is that the technician took it upon themselves to tell you this. At our hospital they do the EEG and the neuro reads it and draws the conclusions. Certainly not the technician! So on that note, I would definitely wait to hear what your neuro has to say! Constipation can be a seizure trigger. It seems a constant threat to many children and we have found giving a magnesium supplement takes care of the problem. If Denis is taking calcium, which he should be, and it is not coupled with magnesium, he will most likely always be constipated. So.........my response is that " yes " constipation can trigger seizure activity. I have always been in the room when the EEG is done. From what you have said, it sounds like you were not. My suggestion for next time is to stay with Denis so you know exactly what is going on (hindsight is always best). Also, if you are not satisfied that the EEG was done accurately, reschedule for another one. I hate them almost as much as my daughter and have never had one that offered any significant help in her treatment so I am not eager to have any extras done, but if this is pointing to another problem that you must deal with, I certainly would consider having it redone. Try to get that constipation issue dealt with before it really does start him seizuring. , 's mumma kcv kcvannett@...> wrote: Well, I'm in shock after Denis' latest eeg experience. Denis takes 1,500 mg of Vigabatrin and finished hormone therapy this fall. We started him on the keto diet in October. Before starting the diet, we did two eegs, both of which showed no seizure activity. Denis has done great with the diet. Ketones are always high and we have seen absolutely no signs of seizure activity. Last Friday Denis went for his first check-up and we had another eeg. At the time, Denis was suffering from major constipation (our only problem associated with the diet) and was extremely agitated (I think he was trying to pass a stool.) He squirmed and wiggled throughout the eeg and did a lot of vocalizing. I assumed the whole experience was a wash, so I was shocked when the technician told us that Denis had actually been sleeping for 30 minutes and that his eeg showed the return of hypsarrithmia! During the time he was supposedly asleep, Denis continued to wriggle, vocalize and open and shut his eyes every minute or so. My questions are these: 1) Can the keto diet cause an eeg to worsen? (We made no other changes to Denis' meds in the time period between eegs) 2) Can Denis have hypsarrithmia without any outward sign of seizures? (Believe me, we look for them like hawks!) 3)Could constipation have caused abnormal brain wave activity to return? 4) Could Denis' wriggling have affected the eeg results? Sorry for this long message but I'm completely thrown for a loop here and I don't know when the doctor will look at the eeg and respond. --Kasey, mother of Denis, 2.5 years " 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 November 29, 2004 Report Share Posted November 29, 2004 If he was very active during the EEG, muscle artefact could have skewed the result. Whether it would resemble an actual hypsarrthymia pattern or not though, I'm not sure. had a lot of EEGs in PICU last yr where false results were given initially by the technician, (who shouldn't really be relaying info, but we pushed for it, as you do...) and then in the actual written reports, but his was the opp scenario - some reports came back with no seizure activity, only muscle artefact, where in fact a 2nd opinion determined that there had been seizure actvity all along, which the muscle artefact had masked. It takes a very experienced pediatric neurologist/epileptologist to accurately interpret an EEG where there has been a lot of physical activity during it, and a technician as far as I am aware, would not be able to tell the difference whilst it is being carried out. If however it turns out that there is no doubt it was seizure activity, the diet itself shouldn't worsen an EEG, (unless it has unmasked an underlying metabolic condition that is worsened with carb restrictions etc, but this would be pretty rare) but the interactions with medications could - in that meds (without increasing the physical dose) can get more potent from being in ketosis. This could in turn lead to toxicity, so toxicity induced seizure activity, along with changes in the EEG in areas like background activity - ie - a more drugged effect can cause a slowed background etc. Constipation can also cause seizure activity, and we found even more so when was on meds that were too high for him to cope with - like a sort of toxic build up seemed to happen in his case. Regular magnesium supplementation helped with this one with - even missing one caspule sees a change in that dept here, ----- Original Message ----- From: kcv Well, I'm in shock after Denis' latest eeg experience. Denis takes 1,500 mg of Vigabatrin and finished hormone therapy this fall. We started him on the keto diet in October. Before starting the diet, we did two eegs, both of which showed no seizure activity. Denis has done great with the diet. Ketones are always high and we have seen absolutely no signs of seizure activity. Last Friday Denis went for his first check-up and we had another eeg. At the time, Denis was suffering from major constipation (our only problem associated with the diet) and was extremely agitated (I think he was trying to pass a stool.) He squirmed and wiggled throughout the eeg and did a lot of vocalizing. I assumed the whole experience was a wash, so I was shocked when the technician told us that Denis had actually been sleeping for 30 minutes and that his eeg showed the return of hypsarrithmia! During the time he was supposedly asleep, Denis continued to wriggle, vocalize and open and shut his eyes every minute or so. My questions are these: 1) Can the keto diet cause an eeg to worsen? (We made no other changes to Denis' meds in the time period between eegs) 2) Can Denis have hypsarrithmia without any outward sign of seizures? (Believe me, we look for them like hawks!) 3)Could constipation have caused abnormal brain wave activity to return? 4) Could Denis' wriggling have affected the eeg results? Sorry for this long message but I'm completely thrown for a loop here and I don't know when the doctor will look at the eeg and respond. --Kasey, mother of Denis, 2.5 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Thank you so much for your replies , and Bill. You all really are a wealth of information. I will take up the subject of magnesium with Denis' dietician immediately. He is indeed on calcium without the magnesium supplement so this seems like something we need to address. I was very interested to hear about the possibility of the diet changing the effectiveness of medication. Our goal has always been to wean Denis off the Vigabatrin and everything I've heard here now has convinced me we need to continue with that plan. I'll post again when I hear the final eeg interpretation from Denis' doctor. --Kasey, mother of Denis, 2.5 years > If he was very active during the EEG, muscle artefact could have skewed the result. Whether it would resemble an actual hypsarrthymia pattern or not though, I'm not sure. > had a lot of EEGs in PICU last yr where false results were given initially by the technician, (who shouldn't really be relaying info, but we pushed for it, as you do...) and then in the actual written reports, but his was the opp scenario - some reports came back with no seizure activity, only muscle artefact, where in fact a 2nd opinion determined that there had been seizure actvity all along, which the muscle artefact had masked. It takes a very experienced pediatric neurologist/epileptologist to accurately interpret an EEG where there has been a lot of physical activity during it, and a technician as far as I am aware, would not be able to tell the difference whilst it is being carried out. > If however it turns out that there is no doubt it was seizure activity, the diet itself shouldn't worsen an EEG, (unless it has unmasked an underlying metabolic condition that is worsened with carb restrictions etc, but this would be pretty rare) but the interactions with medications could - in that meds (without increasing the physical dose) can get more potent from being in ketosis. This could in turn lead to toxicity, so toxicity induced seizure activity, along with changes in the EEG in areas like background activity - ie - a more drugged effect can cause a slowed background etc. > Constipation can also cause seizure activity, and we found even more so when was on meds that were too high for him to cope with - like a sort of toxic build up seemed to happen in his case. > Regular magnesium supplementation helped with this one with - even missing one caspule sees a change in that dept here, > > > > ----- Original Message ----- > From: kcv > > > > Well, I'm in shock after Denis' latest eeg experience. Denis takes > 1,500 mg of Vigabatrin and finished hormone therapy this fall. We > started him on the keto diet in October. Before starting the diet, we > did two eegs, both of which showed no seizure activity. Denis has > done great with the diet. Ketones are always high and we have seen > absolutely no signs of seizure activity. > > Last Friday Denis went for his first check-up and we had another eeg. > At the time, Denis was suffering from major constipation (our only > problem associated with the diet) and was extremely agitated (I think > he was trying to pass a stool.) He squirmed and wiggled throughout > the eeg and did a lot of vocalizing. I assumed the whole experience > was a wash, so I was shocked when the technician told us that Denis > had actually been sleeping for 30 minutes and that his eeg showed the > return of hypsarrithmia! During the time he was supposedly asleep, > Denis continued to wriggle, vocalize and open and shut his eyes every > minute or so. > > My questions are these: > 1) Can the keto diet cause an eeg to worsen? (We made no other > changes to Denis' meds in the time period between eegs) > 2) Can Denis have hypsarrithmia without any outward sign of seizures? > (Believe me, we look for them like hawks!) > 3)Could constipation have caused abnormal brain wave activity to > return? > 4) Could Denis' wriggling have affected the eeg results? > > Sorry for this long message but I'm completely thrown for a loop here > and I don't know when the doctor will look at the eeg and respond. > > --Kasey, mother of Denis, 2.5 years > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Thanks to all who responded to my e-mail about Denis' eeg earlier this week. I'm happy to report that his neuro just informed us that his eeg actually looked " NORMAL " !!! I'm still waiting to get the details from her by e-mail. I guess this goes to show that we really shouldn't trust the opinion of the technicians (even though most of us probably do try to get them to say something). Since Denis seems to be doing so well on the keto diet, I'm hoping his neuro will also send instructions for weaning him off the Vigabatrin. --Kasey, mother of Denis, 2.5 years > > > > Well, I'm in shock after Denis' latest eeg experience. Denis takes > > 1,500 mg of Vigabatrin and finished hormone therapy this fall. We > > started him on the keto diet in October. Before starting the diet, we > > did two eegs, both of which showed no seizure activity. Denis has > > done great with the diet. Ketones are always high and we have seen > > absolutely no signs of seizure activity. > > > > Last Friday Denis went for his first check-up and we had another eeg. > > At the time, Denis was suffering from major constipation (our only > > problem associated with the diet) and was extremely agitated (I think > > he was trying to pass a stool.) He squirmed and wiggled throughout > > the eeg and did a lot of vocalizing. I assumed the whole experience > > was a wash, so I was shocked when the technician told us that Denis > > had actually been sleeping for 30 minutes and that his eeg showed the > > return of hypsarrithmia! During the time he was supposedly asleep, > > Denis continued to wriggle, vocalize and open and shut his eyes every > > minute or so. > > > > My questions are these: > > 1) Can the keto diet cause an eeg to worsen? (We made no other > > changes to Denis' meds in the time period between eegs) > > 2) Can Denis have hypsarrithmia without any outward sign of seizures? > > (Believe me, we look for them like hawks!) > > 3)Could constipation have caused abnormal brain wave activity to > > return? > > 4) Could Denis' wriggling have affected the eeg results? > > > > Sorry for this long message but I'm completely thrown for a loop here > > and I don't know when the doctor will look at the eeg and respond. > > > > --Kasey, mother of Denis, 2.5 years > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Fabulous news Kasey, yep, it does go to show it pays to wait for the correct interpretation So it was all muscle artefact obviously then that made the EEG look so chaotic? Very glad to see you have a neuro capable of differentiating it correctly and giving you that great result, take it from me - not all of 'em can, as we found out the hard way.... Congrats again, and good luck with the vigabatrin wean, ----- Original Message ----- From: kcv Thanks to all who responded to my e-mail about Denis' eeg earlier this week. I'm happy to report that his neuro just informed us that his eeg actually looked " NORMAL " !!! I'm still waiting to get the details from her by e-mail. I guess this goes to show that we really shouldn't trust the opinion of the technicians (even though most of us probably do try to get them to say something). Since Denis seems to be doing so well on the keto diet, I'm hoping his neuro will also send instructions for weaning him off the Vigabatrin. --Kasey, mother of Denis, 2.5 years Quote Link to comment Share on other sites More sharing options...
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