Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Hi Saro, Just sent the pics thru to your direct email, hope they come out ok. He is on topomax 150 mgs (weighs 26-27 kgs, so about 5.5 - 6 mgs per kg - fairly lowish dose) and our old friend (not) depakote, 500 mgs per day (fairly low dose too) and this one is spread over 3 doses in a 24 hr period (one dose at midnight) to try and stop the fairly dramatic peaks and troughs he used to have with this med that used to knock him around so badly. Keto diet ratio 3.5:1, 1450 cals. Leaving all as is for now, obviously we just want some stability back before adjusting anything. His weight has taken a bit of a climb up over the last 2 weeks since the last 50 cal increase, so just waiting for an accurate height measure to see whether we might have overstepped his required cal level. And Rohan? Where are you up to with him? Has he ever had ACTH btw? > , > Great news! and you all deserve it. > What AEDs is on now? > I've forgotten my ID and password for yahoo > and can't see the photos. > > Hugs to > Saro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Hi , Thanks for this info and the pics. They are great. looks a bright little boy even in the September one, though you may have known the difference in him. Infact he and his little brother both look cute. Rohan has not had ACTH. They mentioned it once and I was glad we didn't try it. What made you ask it - do you think it might have helped? We've been having fun games, going to hosptial by ambulance 4 times since the first coma type episode in December. The latest two were trembling/shivering ones with violent head jerks every few seconds. All the time they were increasing Keppra, but since the last episode we are decreasing. The last admission was on the 23rd and we came home on the 25th. Rohan is very tired and his legs and arms are hurting. When he was on 1g Keppra twice a day these were worse and we couldn't even gently touch his legs without him crying out. We are to go down to 625mg twice and we'll stay put if things are fairly OK. You know how you don't want to rock the boat. Saro & Hill wrote: > Hi Saro, > Just sent the pics thru to your direct email, hope they come out ok. > He is on topomax 150 mgs (weighs 26-27 kgs, so about 5.5 - 6 mgs per kg - >fairly lowish dose) and our old friend (not) depakote, 500 mgs per day >(fairly low dose too) and this one is spread over 3 doses in a 24 hr period >(one dose at midnight) to try and stop the fairly dramatic peaks and troughs >he used to have with this med that used to knock him around so badly. > Keto diet ratio 3.5:1, 1450 cals. Leaving all as is for now, obviously we >just want some stability back before adjusting anything. His weight has >taken a bit of a climb up over the last 2 weeks since the last 50 cal >increase, so just waiting for an accurate height measure to see whether we >might have overstepped his required cal level. > And Rohan? Where are you up to with him? Has he ever had ACTH btw? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Hi , Thanks for this info and the pics. They are great. looks a bright little boy even in the September one, though you may have known the difference in him. Infact he and his little brother both look cute. Rohan has not had ACTH. They mentioned it once and I was glad we didn't try it. What made you ask it - do you think it might have helped? We've been having fun games, going to hosptial by ambulance 4 times since the first coma type episode in December. The latest two were trembling/shivering ones with violent head jerks every few seconds. All the time they were increasing Keppra, but since the last episode we are decreasing. The last admission was on the 23rd and we came home on the 25th. Rohan is very tired and his legs and arms are hurting. When he was on 1g Keppra twice a day these were worse and we couldn't even gently touch his legs without him crying out. We are to go down to 625mg twice and we'll stay put if things are fairly OK. You know how you don't want to rock the boat. Saro & Hill wrote: > Hi Saro, > Just sent the pics thru to your direct email, hope they come out ok. > He is on topomax 150 mgs (weighs 26-27 kgs, so about 5.5 - 6 mgs per kg - >fairly lowish dose) and our old friend (not) depakote, 500 mgs per day >(fairly low dose too) and this one is spread over 3 doses in a 24 hr period >(one dose at midnight) to try and stop the fairly dramatic peaks and troughs >he used to have with this med that used to knock him around so badly. > Keto diet ratio 3.5:1, 1450 cals. Leaving all as is for now, obviously we >just want some stability back before adjusting anything. His weight has >taken a bit of a climb up over the last 2 weeks since the last 50 cal >increase, so just waiting for an accurate height measure to see whether we >might have overstepped his required cal level. > And Rohan? Where are you up to with him? Has he ever had ACTH btw? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Oh Saro, sounds like you guys have ben thru the mill recently too. So Rohan must be having an adverse reaction to the keppra then? Do you think there is a happy medium there with this one? Or are you going to keep weaning down? ACTH is used sometimes, and can be v successful with, MAE. (and LGS even tho most of the protocols are based on Infantiale Spasms) Just wondered if it was ever tried with other seizure disorders as well. I guess though becasue of the risk of bone thinning etc it would not be high up there on the list of possibilities with Rohan because of his existing problems. 's last bone density test in Aug was ok, but now that he has had another steroid course (Nov) as well as still being on keto, (and let's not forget AEDs too) I am a bit nervous about it all. Mind you - nervous about everything right now!!! Barb's (kory's Mum) neuro is apparently trying to get a study going on the effects of AEDs on the bones etc, wouldn't it be great if that gets off the ground.... ----- Original Message ----- > Hi , > Thanks for this info and the pics. They are great. looks a bright > little boy even in the September one, though you may have known the > difference in him. Infact he and his little brother both look cute. > Rohan has not had ACTH. They mentioned it once and I was glad we > didn't try it. What made you ask it - do you think it might have helped? > We've been having fun games, going to hosptial by ambulance 4 times > since the first coma type episode in December. The latest two were > trembling/shivering ones with violent head jerks every few seconds. > All the time they were increasing Keppra, but since the last episode we > are decreasing. The last admission was on the 23rd and we came home > on the 25th. > Rohan is very tired and his legs and arms are hurting. When he was on > 1g Keppra twice a day these were worse and we couldn't even gently > touch his legs without him crying out. We are to go down to 625mg twice > and we'll stay put if things are fairly OK. You know how you don't want to > rock the boat. > > Saro Quote Link to comment Share on other sites More sharing options...
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