Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Started him with the carnitine supplement about 10 days ago - took me a while to get a carb free one from our local health food shop etc. Am going to stop it as from tomorrow (he has already had it today!) and see what happens. Ended up having to give 20mg valium last night but he didn't have a seizure from 11.50pm to 8.30am although they did try to get through - he had the odd big twitch like something was trying to get out. I managed to stay up watching him until about 4am and then passed out next to him till he had the seizure at 8.30am. He is pretty much spaced out today and is just lying in bed - I managed to get some food down him at about 11am this morning and am just about to do another lot of tests. He is still looking very clammy and sweaty especially in the face and around his nose area - he doesn't have a temperature at all. The only thing I can think of is that it is the pain - you know how it is when you are in pain and ache, it does make you clammy (or maybe it is just me!) Any thoughts on that one? I've changed all the bed (thank god for a sofa bed) and given him a 'blanket bath' this morning and freshened him up and he is currently watching Teletubbies propped up with lots of nice soft pillows (just trying to make my boy a bit more comfy). My best mate came over this morning and sat with him while I had a shower - so I am feeling a lot better and smell a lot nicer too!!! How did your cakes go? Matt likes coke cola muffins that I make for him - they sound disgusting but they actually taste really good. I have got his birthday party coming up on the 11th September (my boy is 10 on the 8th Sept) and we have a few keto kids coming so I am making a keto birthday cake!!! I booked a trampoliniing party for him - he likes doing that - Just hope I can get him well enough by then to enjoy it. Take Care. Emma. x Mum to . > I know 's glucose is looking like being the problem right > now, but - had a thought - carnitine - you were going to start > supplementing I think? Did you keep up with it? > If so, he would have been on it what, 2-3 weeks now? > 's first hosp admission relating to going catabolic in Feb 03 > was approx 14 days after starting carnitine as a supplement. It had > sped everything up with him, including we assume calorie absorption, > food was metabolising quicker and more efficiently - we knew this > because of a concurrent ketone increase, so his cal shortfall in > between needs was even greater. Deeper ketosis also meant Aeds hit > harder, so toxic on meds too, and so on.... > Anyways....there was always the packet insert warning in the back of > my mind that did state that in some seizure syndromes carnitine > aggravated seizures......so I never really knew whether had > an adverse reaction to the supplement itself, or whether this was > one of the reasons some kiddies did have that adverse reaction, just > as 's had been - a sort of metabolic chain of events. > Soooo.......not the same scenario as 's I know, but just in > case he has had an adverse reaction to the carn supplement, maybe it > would pay to stop them for a while? > If he isn't on it, lol, well ignore all of the above. > Hope your night went ok, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 V pleased you had a break for a shower etc - it helps Well the valium did it's job fairly well last night didn't it, but sorry to hear he is dazed from it today - to be expected tho Not sure about the sweaty stuff, I haven't really seen that here before, but yeah, any sort of stress could invoke a reaction like that I guess. That first batch of cakes was awful, second one not AS bad, changed the temp I baked them at, helped a bit. Have saved them for the party tomorrow, looks pretty keen on them, so that's the main thing He loves cashew nuts, and I have managed to squeeze quite a few into the mealplan, so all in all I think he will be happy. It is a pool party he is going to - doesn't excite me a lot - I think it will be pretty nervewracking watching him in the water, wish the birthday kid had picked another venue/theme... Cola muffins eh? Made with almonds or eggwhites? Er, are they easy? My sister's birthday is Sep 8th too, but thankfully someone else is doing her cake > Started him with the carnitine supplement about 10 days ago - took me > a while to get a carb free one from our local health food shop etc. > Am going to stop it as from tomorrow (he has already had it today!) > and see what happens. > > Ended up having to give 20mg valium last night but he didn't > have a seizure from 11.50pm to 8.30am although they did try to get > through - he had the odd big twitch like something was trying to get > out. I managed to stay up watching him until about 4am and then > passed out next to him till he had the seizure at 8.30am. > > He is pretty much spaced out today and is just lying in bed - I > managed to get some food down him at about 11am this morning and am > just about to do another lot of tests. He is still looking very > clammy and sweaty especially in the face and around his nose area - > he doesn't have a temperature at all. The only thing I can think of > is that it is the pain - you know how it is when you are in pain and > ache, it does make you clammy (or maybe it is just me!) Any thoughts > on that one? > > I've changed all the bed (thank god for a sofa bed) and given him > a 'blanket bath' this morning and freshened him up and he is > currently watching Teletubbies propped up with lots of nice soft > pillows (just trying to make my boy a bit more comfy). My best mate > came over this morning and sat with him while I had a shower - so I > am feeling a lot better and smell a lot nicer too!!! > > How did your cakes go? Matt likes coke cola muffins that I make for > him - they sound disgusting but they actually taste really good. I > have got his birthday party coming up on the 11th September (my boy > is 10 on the 8th Sept) and we have a few keto kids coming so I am > making a keto birthday cake!!! I booked a trampoliniing party for > him - he likes doing that - Just hope I can get him well enough by > then to enjoy it. > > Take Care. > > Emma. x Mum to . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Re the sweating, these days Rohan has a couple of OKdays and then several sz in one day. On such days we can say it's going to be like that, just by touching his palms. They get so clammy. During a tc seizure his palms will be pouring sweat. His feet get cold/clammy too. We've told his dr. about it. She thought it a reaction of the body to a stressful situation - I think there maybe more to it, perhaps some useful clues. The thing that puzzles me is that went into a catabolic state because of calories being too low. seems to be the opposite as he seems to be having too many calories. Can this cause the same problem?? Emma, I hope things are settling down. Saro spot1938nz wrote: >V pleased you had a break for a shower etc - it helps >Well the valium did it's job fairly well last night didn't it, but >sorry to hear he is dazed from it today - to be expected tho >Not sure about the sweaty stuff, I haven't really seen that here >before, but yeah, any sort of stress could invoke a reaction like >that I guess. >That first batch of cakes was awful, second one not AS bad, changed >the temp I baked them at, helped a bit. Have saved them for the >party tomorrow, looks pretty keen on them, so that's the main >thing He loves cashew nuts, and I have managed to squeeze quite a >few into the mealplan, so all in all I think he will be happy. It is >a pool party he is going to - doesn't excite me a lot - I think it >will be pretty nervewracking watching him in the water, wish the >birthday kid had picked another venue/theme... >Cola muffins eh? Made with almonds or eggwhites? Er, are they easy? >My sister's birthday is Sep 8th too, but thankfully someone else is >doing her cake > > > > > > > > > > > > >>Started him with the carnitine supplement about 10 days ago - took >> >> >me > > >>a while to get a carb free one from our local health food shop >> >> >etc. > > >>Am going to stop it as from tomorrow (he has already had it >> >> >today!) > > >>and see what happens. >> >>Ended up having to give 20mg valium last night but he >> >> >didn't > > >>have a seizure from 11.50pm to 8.30am although they did try to get >>through - he had the odd big twitch like something was trying to >> >> >get > > >>out. I managed to stay up watching him until about 4am and then >>passed out next to him till he had the seizure at 8.30am. >> >>He is pretty much spaced out today and is just lying in bed - I >>managed to get some food down him at about 11am this morning and >> >> >am > > >>just about to do another lot of tests. He is still looking very >>clammy and sweaty especially in the face and around his nose area - >> >> > > > >>he doesn't have a temperature at all. The only thing I can think >> >> >of > > >>is that it is the pain - you know how it is when you are in pain >> >> >and > > >>ache, it does make you clammy (or maybe it is just me!) Any >> >> >thoughts > > >>on that one? >> >>I've changed all the bed (thank god for a sofa bed) and given him >>a 'blanket bath' this morning and freshened him up and he is >>currently watching Teletubbies propped up with lots of nice soft >>pillows (just trying to make my boy a bit more comfy). My best >> >> >mate > > >>came over this morning and sat with him while I had a shower - so >> >> >I > > >>am feeling a lot better and smell a lot nicer too!!! >> >>How did your cakes go? Matt likes coke cola muffins that I make >> >> >for > > >>him - they sound disgusting but they actually taste really good. >> >> >I > > >>have got his birthday party coming up on the 11th September (my >> >> >boy > > >>is 10 on the 8th Sept) and we have a few keto kids coming so I am >>making a keto birthday cake!!! I booked a trampoliniing party for >>him - he likes doing that - Just hope I can get him well enough by >>then to enjoy it. >> >>Take Care. >> >>Emma. x Mum to . >> >> > > > > > > " 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...
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