Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 Patti, I agree that 's diet initiation wasn't handled very well. I questioned them several weeks ago re: MRI and PET scan the first two days of initiation and was told not to worry about it...it would be fine. is on the thin side. She is around the 35th percentile for weight. Besides the one injection of Ativan in the hospital, has never been on any type of Benzo. She has been on Zarontin, Topomax, Felbatol, Lamictal and Depakote with Depakote being the last drug we weaned. I thought I was prepared for anything that could happen during inititation because of my research and mostly because of this listserv and all the information the parents have shared...however, I wan't prepared to bring my little girl home having 3x the number of seizures as when she was admitted. So far, she seems to be able to maintain large ketones at the 3:1 ratio. I'm going to stick with very simple meal plans and try not to change anything for now until we can determine if the diet will provide some some seizure control. Thanks for your support. Beth, mother of age 5 In a message dated 5/25/2003 9:02:07 PM Eastern Standard Time, durovchic@... writes: > > > Beth, > Seems to me that they didn't handle her initiation very well at all. In my > opinion, they shouldn't have initiated the diet on the same day they were > sedating for an MRI..... that's just poor planning. That's a lot for her little > body to handle all at once. RE: the ratio.... Our clinic almost never > starts anyone at higher than 3.5:1 so that's where Katera was started at age 4. > We had already weaned all meds, too. You're lucky there..... it's great that > you won't have the ordeal of weaning them while on the diet. Five weeks is not > very long, though..... in the world of AED's, it's not impossible that there > still could be some fallout/withdrawal-ish stuff at this point. Some of the > drugs hang out in the body for some time...... especially in body fat. Is she > a skinny-minnie? Or does she have a little pudge? Katera had to be on > restricted calories at first in order to lose a little excess weight. They wanted > this because they say they get the best control in kids who are around the > 25th percentile for weight. So, anyway, as they burn that body fat, some of the > drug residue is having to be processed. I have even been told that if the > body perceives a particular substance would be extremely harmful, it will do > whatever it can to protect the brain and CNS from it..... basically treating it > like a toxin..... and will store it in the fat tissue to keep it out of the > blood stream and away from the brain. Now, it may even be that she will need > a little while to clear the Ativan out of her system.... on top of the > sedation med. Has she ever had a problem with any benzo type drugs in the past? > > I hope things stabilize and get better soon for .... and I have a > feeling they will. I would just hold tight with that ratio if her ketones are > between 80 and 160. Try to make as few changes as possible for a while and just > ride it out. Glad to hear she is liking the food.... that's a relief. I'm > sure you're disappointed in seeing an increase in seizures instead of a > decrease.... but hang in there. Give it some time. > > Patti, mom to Katera > Re: Diet Initiation Reaction > > > My daughter , age 5, just completed the diet initiation phase. I > thought I was prepared for what would happen....boy was I surprised. I > just wanted > to get some feedback from the list " experts " to see if 's reaction > is > common? I've always read that most people see some seizure control during > this > phase? > > went in the hospital having anywhere from 30 to 100 absence seizure > s > per day. During the initiation phase she was having anywhere from 300 to > 400 a > day which was confirmed by the video EEG. I think several things impacted > > this including: day one of admission, she was sedated for an MRI; 2nd > day she > wasn't allowed to drink the 2/3's eggnog shakes due to a PET scan that > afternoon. She vomited 4 times that second day and was extremely > lethargic. Her > blood sugar levels dropped to the mid 30's. They ended up giving her 1/2 > of a > popsicle which seemed to help. They lowered her ratio from 4:1 to 3.5 to > 1. > Her second night in the hospital, she had her first nonconvulsive status > seizure, she was given Ativan to bring her out. She has had absence > seizures for > almost 4 years and the longest one she has ever had has been less than 10 > seconds > with most lasting less than 5 seconds. They lowered her ratio again to 3 > to > 1. She seems to be maintaining large ketones at this ratio and I have > been > pleasantly surprised at her reaction to the food. We haven't had any > problems > with her not eating what we fix for her. > > has always been very sensitive to new situations which seem to > bring > on more seizures. I think her reaction was a combination of the low blood > > sugar, the two sedations (MRI and PET scan), and anxiety. I almost > forgot, she > started getting a cold the third day of the initiation phase which still > hasn't > gone away. Has anyone else experienced this????? > > Since we have been home, I have noticed an improvement but still not back > to > where we were before we started the diet. > > Any thoughts would be appreciated. > > Thanks so much, > Beth, Mom of age 5 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Beth, <<I questioned them several weeks ago re: MRI and PET scan the first two days of initiation and was told not to worry about it...it would be fine.>> Ugh! Sounds like that was done for THEIR convenience only, to me. Shame on them! <<She has been on Zarontin, Topomax, Felbatol, Lamictal and Depakote with Depakote being the last drug we weaned.>> I think it's possible that you could still be seeing a little fallout from the Dep...... and she may have been a little closer to her seizure threshold because of it, then you add the stress of the diet on top of that. Who knows..... it's possible though. <<I thought I was prepared for anything ...however, I wan't prepared to bring my little girl home having 3x the number of seizures as when she was admitted.>> That's a big disappointment.....I know you're bummed. I sure hope things settle out quickly and you start seeing them fading away. (((((((((((Beth))))))))))) Patti Quote Link to comment Share on other sites More sharing options...
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