Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 Bill, we don't leave Kalob alone in the hospital either out of fear. Right after his brain injury, which was a little over two years ago, he spent 2 months in the hospital and the nurses talked me into going home one night. About 6am I called to check on him, only to find out that during the night one of the nurses saw him tremoring (which was part of the brain injury and not a seizure) thought he was having a seizure and took it upon herself to give him rectal valium. On another occasion, I went to get a cup of coffee and came back to find Kalob laying in vomit and the nurse was walking out of the room and said he was sleeping as I walked in. NEVER does he spend time alone! I can't blame you at all. The last time we were in I had to put a nasty note on the door just so they would let the poor kids sleep and still had to chase people out of the room every half hour! At least I know i'm not nuts for being so controlling of his care... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hi Bill, sorry i dind,t get back with you on my last post, i read so many of these post its hard to keep track.I talked to the doctor and dietician about Caden,s behavior he has been a littel aggresive latley, they said that they usally dont see this with the diet, but he has never been that way until the diet, but he is so hungry all the time, they thought they would raise his ratio, i know you said it was a big jump from 4:01 to 3:01, but thats what they did , its only been not quite a week so we will have to see, but his ketones are staying pretty high. Cade does keep high ketones fairly easy but his seizures vary from dad to day , it seems his seizures were best when he first came home, from the hospital,so that might be telling me that he was doing better because he wasnt eating as much then no appetite, so we might have went in the wrong direction,he might need lower than 4:01 , and he just started carnitor, so the doctor wanted to see if this would help him some, we have done no med decrease yet. he wants to wait until Deceber to start weaning him off the Depakote and see what happens, he is also taking CLONAZPAM, so you wander if the drugs are getting in the way , i know depakote is not a good one to be on with this diet, Iam so new to this diet so much to learn feel very helpless at times. Thank you for asking about Caden. Any thoughts are welcome, GodBless Caden,s Viola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Viola, I know that it is hard to keep up with everything, especially when things aren't going too well. Sorry to hear that you are still having problems. Unless there is a strong reason to change the ratio, it is probably good to stick with 4:1 for some time. It sounds like things are not stable enough to really evaluate the ratio. Many drugs make the diet more difficult to manage. Many people get better results without the medications. Reducing medications is one of the primary goals of the diet. Often the calories are set too high to get good results on the diet. What are your findings on weight and height? I am thinking about Caden and wishing him well! Here is a message from someone that sounds similar to your experience. Do you agree? " > Hallie wrote: >> This was posted by my daughter on the Landau Kleffner site but I >> thought I would get your opinions on it also. Thanks, Hallie >> >> by Joanie, (my daughter) My son Tanner has been taking Lamictal for >> about 6 months along with depakote.. His EEG on Oct. 20th showed very >> frequent seizures in his left temporal area of his brain. The neuro >> increased his lamictal from 20mg twice a day, to 30 mg twice a day >> (currently at 25mg twice a day). Tanner had not had any clinical >> seizures since starting the keto diet in July. His EEG in June showed >> constant seizures generalized to the whole brain, so we have seen >> improvement. After the increase in lamictal Tanner improved >> significantly in school, but then a week into the increase he began >> having cluster seizures and twice have had to use diazepam to stop >> them. I am wondering if it is the lamictal increase, but the neuro >> doesn't think so (hasn't seen this happen with Lamictal). I also >> asked about taking Tanner off depakote, but the doctor checked his >> level and said it was fine and that if we dc'd depakote he would have >> to increase lamictal significantly to get the same benefit from it. >> It's confusing to me that Tanner had such significant gains in school >> and at the same time started having clinical seizure activity. I am >> curious if anyone else has seen this with Lamictal. Tanner had a >> Lamictal level drawn yesterday but we won't have the results for a >> week. >> >> Thanks for any info. Joanie >> >> Also he has appeared very emotional, crys easily, is not going to >> sleep as easily. He had not had any seizures that showed without the >> EEG since July 1st. The last week he has had them every other day >> and has been given diazapam on the days he has them which stops the >> seizure but makes him bounce off the walls. He also had a flu shot a >> week ago. His Grandma Hallie All the best Viola, Bill vihairaffair2000 wrote: > > Hi Bill, sorry i dind,t get back with you on my last post, i read so > many of these post its hard to keep track.I talked to the doctor and > dietician about Caden,s behavior he has been a littel aggresive > latley, they said that they usally dont see this with the diet, but > he has never been that way until the diet, but he is so hungry all > the time, they thought they would raise his ratio, i know you said > it was a big jump from 4:01 to 3:01, but thats what they did , its > only been not quite a week so we will have to see, but his ketones > are staying pretty high. Cade does keep high ketones fairly easy but > his seizures vary from dad to day , it seems his seizures were best > when he first came home, from the hospital,so that might be telling > me that he was doing better because he wasnt eating as much then no > appetite, so we might have went in the wrong direction,he might need > lower than 4:01 , and he just started carnitor, so the doctor wanted > to see if this would help him some, we have done no med decrease > yet. he wants to wait until Deceber to start weaning him off the > Depakote and see what happens, he is also taking CLONAZPAM, so you > wander if the drugs are getting in the way , i know depakote is not > a good one to be on with this diet, Iam so new to this diet so much > to learn feel very helpless at times. Thank you for asking about > Caden. Any thoughts are welcome, GodBless Caden,s Viola > > > > > > Quote Link to comment Share on other sites More sharing options...
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