Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Hi Natasha- Thank you so much for your helpful insight as to what could be going on w/. You know, I've only been checking glucose for a few months and in retrospect, I guess I probably overreacted w/his glucose values. Certainly, they are not " high " at all - just indeed, higher than what we are used to seeing and w/the seizure and the recent ratio/calorie changes - I was worried. It's also not " uncommon " for 's glucose to be slightly raised prior to big seizure activity which is why I check it. It's the " why " part that bugs me. Come to find out,this time, he caught the virus my daughter had last week. Simple cold virus w/conjuctivitis. typically has a seizure 2 days before he comes down w/symptoms - I should have thought of this, especially w/the raised glucose. As for calories - he originally was at 1080 calories and I've been slowly coming down. He definitely needs to drop some weight and I'm positive his weight is affecting seizure control. The problem is, we've recently started him on Carnitine which we also have to slowly raise to get to a therapeutic level. Thoughts in that area are - if he wasn't properly metabolizing the fat - chances are - he was burning muscle instead of the calories. If, the carnitine helps to metabolize the fats appropriately, chances are he'll start utilizing cals. more and burn thru them. I don't want to lower his cals. by too much until I see what this carnitine is going to do. There is a lot of metabolic changes going on right now - I'm just hoping we can muddle thru and find the right " balance " . UGHHH.... but again, thank you for your input!! Hope all is going well w/ph! It sounds like you have learned a lot in the little amount of time ph's been on the diet! That's awesome news for ph. (mom to - 2.5yrs. old - ketokid since 6/03 - drug free since 3/27/04 - working on the last of the seizures!) --- natashagainford beasly@...> wrote: > > Hi > Although I am still new and do not have very much > experience( I have > alot of experience with blood sugar though as ph > has > hypoglycemia and his blood sugar rarely exceeds 3.5 > mml/l (something > around 60 I think ) ,I have to agree with Cammie > that glucose is not > an issue.The numbers you provide are within normal > range,I would say > it is perfect blood sugar and it would be quite > weird if had > a seizure because of normal blood sugar.I have a > theory,it could be > silly ,but anyways.Like Cammie said the diet is > supposed to mimic > stavation metabolism that means has to burn > all calories he > gets.If he gets too many calories his body stores > the calories he > did not burn and that means his metabolism does not > mimic starvation > as it should.So his calories excess bilds up for 2 > weeks untill > there are too many calories are stored and his body > does not know > what to do with them but seize( he burns calories > excess during a > seizure as it requres alot of energy).I hope that > makes at least a > little bit sence.Like i said my impression was 1000 > calories are too > many.Even ph who runs like a crazy every day and > is able to sit > down only in front of TV ganed a little bit weight > on 975 calories > and I think we should decrease them.By no means I am > an expert > here,just wanted to share my thoughts.By the way > I've read that > calories restriction one of the magor things that > can help with > seizure control > > Natasha,mom to 2 years old ph,suspected > SMEI/Dravet's > syndrome,keto kid since August 23d 2004 > > > > > > Hey - > > > Am wanting to pick your brain - hopefully you > can shed > > > some light b/c I'm stumped. > > > > > > Opted NOT to increase 's Carnitor so he's > still > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Hi Please keep in mind it was just " my own theory " and I could be wrong. By the way blood sugar ups and downs can affect behaviour and it is what exactly happens with ph.As he has hypoglycemia he is very sensitive to blood sugar " jumps " .When he has " high " blood sugar,which means normal for an average person, he becomes nuts and hyper,sometimes he can have a seizure but it is rather because he runs like crazy than blood sugar itself.In early days of his epilepsy we though blood sugar was an issue as he often had seizures " due to " low blood sugar.Later we discovered he had hypoglycemia and low blood sugar is normal for him ,he is not symptomatic and feels good.His sugar dropped as low as 1.6 mml/l and he did not have any symptoms, had a seizure though,but it is questionable if it was due to low sugar.An ambulance always thinks he has a seizure due to low sugar if it is lower than 3.3, but we know it is not true as he is OK even if his sugar 2.5. At your place I would not really worry about blood sugar untill it is too low ,less than 3.3 mml/l or too high ,greater than 8-10 mml/l ( not after meal).Sorry I do not use the measurment you are use to. Sorry to hear about 's illnes,but on the other hand you have an explanation for his seizure(have to look at posistive things As for ph we do not know if the diet is going to work for him or not.I do hope for the best but there was not very many suscess stories for SMEI kids so we'll see. Natasha,mom to 2 years old ph,suspected SMEI/Dravet's syndrome,keto kid since August 23d 2004 > > > > Hey - > > > > Am wanting to pick your brain - hopefully you > > can shed > > > > some light b/c I'm stumped. > > > > > > > > Opted NOT to increase 's Carnitor so he's > > still > > > === message truncated === > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Hi Please keep in mind it was just " my own theory " and I could be wrong. By the way blood sugar ups and downs can affect behaviour and it is what exactly happens with ph.As he has hypoglycemia he is very sensitive to blood sugar " jumps " .When he has " high " blood sugar,which means normal for an average person, he becomes nuts and hyper,sometimes he can have a seizure but it is rather because he runs like crazy than blood sugar itself.In early days of his epilepsy we though blood sugar was an issue as he often had seizures " due to " low blood sugar.Later we discovered he had hypoglycemia and low blood sugar is normal for him ,he is not symptomatic and feels good.His sugar dropped as low as 1.6 mml/l and he did not have any symptoms, had a seizure though,but it is questionable if it was due to low sugar.An ambulance always thinks he has a seizure due to low sugar if it is lower than 3.3, but we know it is not true as he is OK even if his sugar 2.5. At your place I would not really worry about blood sugar untill it is too low ,less than 3.3 mml/l or too high ,greater than 8-10 mml/l ( not after meal).Sorry I do not use the measurment you are use to. Sorry to hear about 's illnes,but on the other hand you have an explanation for his seizure(have to look at posistive things As for ph we do not know if the diet is going to work for him or not.I do hope for the best but there was not very many suscess stories for SMEI kids so we'll see. Natasha,mom to 2 years old ph,suspected SMEI/Dravet's syndrome,keto kid since August 23d 2004 > > > > Hey - > > > > Am wanting to pick your brain - hopefully you > > can shed > > > > some light b/c I'm stumped. > > > > > > > > Opted NOT to increase 's Carnitor so he's > > still > > > === message truncated === > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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