Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 has been fairly spaced out all day and just wanting to lie on the settee - hardly surprising considering the amount of valium he had last night! Anyway the day has gone as follows: 8.30am - t/c seizure - about 1 minute in duration. Fell asleep again after this one. 10.30am Ketones 1.8 Glucose 4.3 11am 540 calorie breakfast 1.20pm Ketones 1.4 Glucose 3.2 - 60 calorie snack given. 3pm 600 calorie lunch given (late because breakfast was so late) 5.20pm 60 calorie snack given 5.30pm Ketones 4.2 Glucose 3.2 7.15pm 660 calorie dinner given 8.30 60 calorie snack given and then he fell asleep. 9.30pm - t/c seizure - again about 1 minute in duration 10.20pm - t/c seizure - about 1 minute - gave 10mg valium. 1am - Ketones 4.0 Glucose 3.8 He has slept soundly since the valium - hopefully it will be like that for the rest of the night. I am sleeping downstairs with him again tonight. I gave him carnitine this morning - but will not give it tomorrow and see how he goes. All I am glad about at the moment is that he is sleeping and hopefully his body is having some time to recover from all the seizures he has been having. (Touching everything wood at the moment!!) Wish us luck and good luck to everyone else who is trying to work through their own traumas as well - what a fun time we have!!! Take Care everyone and thanks again - you guys are a real life line to me at the moment. Lots of love, Emma - Mum to . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Dear Emma I understand what you are going through and how hard it is to watch your child suffer and not be able to do a thing for them. Keep being strong and remember even though it is really hard someday you will be able to give another parent hope and support because of what you are going through with . This is how I keep sain I have been able to help so many parents because of my little angel Casey. She has been through much of what your is going through keep up the great work and remember there is always someone to talk to on the sight. Carol Caseys mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Hi Carol and all. Thanks for your message - I hope that I will be able to help other parents avoid all this. I'm almost afraid to post this, but is better than he was - he only had 3 seizures last night and even had an afternoon nap without having a seizure. His favourite time is about 1-2 hours after he has gone to bed and about 7-8am in the morning. I am not altering anything else on the diet at the moment and giving his system time to calm down and settle for a while before any more 'tweaking' is done. This whole episode has been such a reminder of what life used to be like before the diet and I really don't want go back there again if at all possible. The more I go on with this the more I hate epilepsy and what it can do to a child and the family as a whole. I really wish that all our little ones could find their 'cure' and live their lives without having to deal with all this. I am sure parents of all special needs children feel the same way. For all the stress and pain that we go through with our children, I know that all of it has changed me so drastically - no longer do material things matter, no longer can I tolerate shallow people whose whinges and moans consist of not being able to afford a second holiday, the latest designs or their cleaner not turning up etc, etc (some of the conversations outside my daughters school are priceless!) - funnily enough none of these conversations ever take place outside my sons school - it is always " how are you? " and we talk about how our children are doing, hospital appointments etc - some of us look tired on particular weeks, so we have a fair idea how things are going! Maybe I should be more tolerant of other people - after all their problems are real to them, but there are times I just want to scream at them that it doesn't really matter and they should go home and dance round the kitchen with their kids, but they would probably look at me like I was mad! I did that this evening, I danced round the kitchen with Alice, her two friends and - he stood there watching me and looking totally bewildered and when I looked at him, he just smiled at me and gave me a hug - he can't talk but that hug spoke a million words and it was just what we needed. God knows why I am writing all this down and posting it on site - I just need to, so I am sorry about my wittering on. I read most of the posts on this site (when I can) and I see you all struggling and doing the best you can and this is where I feel comfortable being, we know what every one of us are going through, the trials, tribulations and the successes and I love reading about the successes - I know very few of you but I care about all of you and your children - call it 'brothers in arms' (or sisters!) if you like. When first had epilepsy, I was very angry and I wanted to know why? - why me? what had I done that was so bad that my child was punished in this way? why couldn't it have been put on me and not my baby? - I felt like that for a long time and then I read a book by Betty J Eadie called 'Embraced by the Light' and my whole attitude changed overnight. I really do feel very blessed to have a child like now - although there are times of panic, heartbreak, worry, sleepless nights etc. The times that are good and the 'dancing round the kitchen' times really make up for it and my God, do I appreciate them. With love and prayers to all of you and our little ones. I don't know what is possessing me to write all this - but please bear with me and let me just 'get it out' - Thanks. Emma. Mum to . > Dear Emma > I understand what you are going through and how hard it is to watch > your child suffer and not be able to do a thing for them. Keep being > strong and remember even though it is really hard someday you will > be able to give another parent hope and support because of what you > are going through with . This is how I keep sain I have been > able to help so many parents because of my little angel Casey. She > has been through much of what your is going through keep up > the > great work and remember there is always someone to talk to on the > sight. > Carol Caseys mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Felt all of it here too, many many times before Emma - do that kitchen dance whenever you can. I won't mention you know what - but keeping everything crossed, ssssshhh ----- Original Message ----- From: ketomum68 Hi Carol and all. Thanks for your message - I hope that I will be able to help other parents avoid all this. I'm almost afraid to post this, but is better than he was - he only had 3 seizures last night and even had an afternoon nap without having a seizure. His favourite time is about 1-2 hours after he has gone to bed and about 7-8am in the morning. I am not altering anything else on the diet at the moment and giving his system time to calm down and settle for a while before any more 'tweaking' is done. This whole episode has been such a reminder of what life used to be like before the diet and I really don't want go back there again if at all possible. The more I go on with this the more I hate epilepsy and what it can do to a child and the family as a whole. I really wish that all our little ones could find their 'cure' and live their lives without having to deal with all this. I am sure parents of all special needs children feel the same way. For all the stress and pain that we go through with our children, I know that all of it has changed me so drastically - no longer do material things matter, no longer can I tolerate shallow people whose whinges and moans consist of not being able to afford a second holiday, the latest designs or their cleaner not turning up etc, etc (some of the conversations outside my daughters school are priceless!) - funnily enough none of these conversations ever take place outside my sons school - it is always " how are you? " and we talk about how our children are doing, hospital appointments etc - some of us look tired on particular weeks, so we have a fair idea how things are going! Maybe I should be more tolerant of other people - after all their problems are real to them, but there are times I just want to scream at them that it doesn't really matter and they should go home and dance round the kitchen with their kids, but they would probably look at me like I was mad! I did that this evening, I danced round the kitchen with Alice, her two friends and - he stood there watching me and looking totally bewildered and when I looked at him, he just smiled at me and gave me a hug - he can't talk but that hug spoke a million words and it was just what we needed. God knows why I am writing all this down and posting it on site - I just need to, so I am sorry about my wittering on. I read most of the posts on this site (when I can) and I see you all struggling and doing the best you can and this is where I feel comfortable being, we know what every one of us are going through, the trials, tribulations and the successes and I love reading about the successes - I know very few of you but I care about all of you and your children - call it 'brothers in arms' (or sisters!) if you like. When first had epilepsy, I was very angry and I wanted to know why? - why me? what had I done that was so bad that my child was punished in this way? why couldn't it have been put on me and not my baby? - I felt like that for a long time and then I read a book by Betty J Eadie called 'Embraced by the Light' and my whole attitude changed overnight. I really do feel very blessed to have a child like now - although there are times of panic, heartbreak, worry, sleepless nights etc. The times that are good and the 'dancing round the kitchen' times really make up for it and my God, do I appreciate them. With love and prayers to all of you and our little ones. I don't know what is possessing me to write all this - but please bear with me and let me just 'get it out' - Thanks. Emma. Mum to . Quote Link to comment Share on other sites More sharing options...
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