Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 - Just read your post to Gretchen and noted that had nocturnal seizures...which were well controlled by Topamax?? Very interesting as that is Skyler's resistant seizure pattern as well. We've had two attempted go-rounds w/Topamax but both w/pretty severe cognitive and language side effects, even at low doses. How has fared on these two arenas w/the Topamax? Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Gretchen, is 10, and is 4, so at 7 is our middle child. I changed their pics in the photo section this morning actually, the other ones in there were getting a bit old. It's quite nice of the 3 of them, though was looking at the camera at that angle to get red eye, but never mind and Jake are like genetic peas in the pod, so desperately hoping that epilepsy wise, it doesn't extend too far.... Yep, is still on topomax....but this wasn't actually gonna be the plan originally when it was started back in Dec. As we felt so strongly that 's problems were from an intolerance to benzodiazepines in conjunction with high ketones brought about by the introduction of carnitine, we were sure we were going to improve him by taking away the oral diazepam completely (regular AED previously), but the abrubt withdrawl after 3 yrs use left him in deep you know what at the other end of the scale. When he had these reactions to weaning meds prior, we were always able to jump in with an emergency med (usually a benzo cousin) to stop the withdrawal cycle. This time though we had nothing, as his file had been noted with benzo hypersensitivity and had probably caused the problems in the first place....phenytoin and phenobarb are not recommended with his syndrome, (can aggravtate their seizures) and parladehyde had done nothing. That's where the topomax rapid introduction came in, it had worked in a few cases round the world to break status when introduced very rapidly (not usually recommended, can lead to quite severe side effects but we were desperate) and this is what the consulting ped epi had recommended trying to 'stop the cycle'. It worked very quickly if indeed it was that (as you know we are still not 100% sure), and we were able to stop the rapid incrementing up after 5 days, so at that point he was only on 5 mgs per kg (plan had been to go up as high as 12 mgs per kg), the very lowest end of 'theraputic'. Because all the seizures stopped completely soon afterwards, (including night ones which had always been his main problem post-diet) no one, including us, was keen on taking the topomax away, 'just in case' it had done more than stop the cycle and was finally a med that actually worked for him. So that's where we are stuck, on the same dose with it causing some problems ph/acidity wise in conjunction with the diet and not sure what to change, if anything at all... But - I'm not complaining too loudly, it is a lowish dose and doesn't seem to have affected him badly in any other area, and of course with no seizures happening, I am just grateful that something (whatever it may be...) is working for him. It may be that the diet without benzos on board finally is now working 100% for him (he had in the main daytime control for his first 2 yrs on the diet, just the intermittent night ones left), or there is a slight chance that he has actually 'outgrown' his syndrome fullstop, this can happen with MAE, but I haven't let myself dream quite that far yet Ask me again in 12 mths time.... ----- Original Message ----- > HI , > I'm glad to hear is doing well. Is he still taking > topomax? How old are your other two kids? > Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi , I'll have to check out your family photo. After what went through with the seizure cycle, I completely understand why you are sticking with the topomax. I'm so glad it hasn't affected him too adversly. You were lucky there. What is MAE? Is there a good chance will outgrow his seizures completely? We met with our doctor this week, and he thinks Ethan was one of those rare cases where the AEDs actually made the seizures worse. He thinks the diet is completly working for Ethan, and he even lowered the ratio to 3.5:1. For so many years, doctor visits always left me feeling worse, but since starting the diet and since meeting our new doctor, each visit gives me new hope. In April, one month after starting the diet, Ethan's old seizures stopped, and this new type started. They can last up to 30 minutes, but seem very benign otherwise. He just looses consciousness as though he were asleep. Since they don't show up on the EEG and don't fit other symptoms of seizures (Ethan very conveniently had one the doctor's office the other day), the doctor thinks they are not really seizures. We are going to start biofeedback and look for other ways to stop them. I am so thankful for this diet, that has allowed us to get Ethan off AEDs. And I am so thankful for this group that helped keep me going through the times when I feared the diet wasn't working and wanted to quit. I am even daring to think that Ethan might have a completly 'normal' future. What a concept! Gretchen > Hi Gretchen, > is 10, and is 4, so at 7 is our middle child. I > changed their pics in the photo section this morning actually, the other > ones in there were getting a bit old. It's quite nice of the 3 of them, > though was looking at the camera at that angle to get red eye, but > never mind > and Jake are like genetic peas in the pod, so desperately hoping > that epilepsy wise, it doesn't extend too far.... > Yep, is still on topomax....but this wasn't actually gonna be the > plan originally when it was started back in Dec. > As we felt so strongly that 's problems were from an intolerance to > benzodiazepines in conjunction with high ketones brought about by the > introduction of carnitine, we were sure we were going to improve him by > taking away the oral diazepam completely (regular AED previously), but the > abrubt withdrawl after 3 yrs use left him in deep you know what at the other > end of the scale. When he had these reactions to weaning meds prior, we were > always able to jump in with an emergency med (usually a benzo cousin) to > stop the withdrawal cycle. This time though we had nothing, as his file had > been noted with benzo hypersensitivity and had probably caused the problems > in the first place....phenytoin and phenobarb are not recommended with his > syndrome, (can aggravtate their seizures) and parladehyde had done nothing. > That's where the topomax rapid introduction came in, it had worked in a few > cases round the world to break status when introduced very rapidly (not > usually recommended, can lead to quite severe side effects but we were > desperate) and this is what the consulting ped epi had recommended trying to > 'stop the cycle'. It worked very quickly if indeed it was that (as you know > we are still not 100% sure), and we were able to stop the rapid incrementing > up after 5 days, so at that point he was only on 5 mgs per kg (plan had been > to go up as high as 12 mgs per kg), the very lowest end of 'theraputic'. > Because all the seizures stopped completely soon afterwards, (including > night ones which had always been his main problem post-diet) no one, > including us, was keen on taking the topomax away, 'just in case' it had > done more than stop the cycle and was finally a med that actually worked for > him. > So that's where we are stuck, on the same dose with it causing some > problems ph/acidity wise in conjunction with the diet and not sure what to > change, if anything at all... > But - I'm not complaining too loudly, it is a lowish dose and doesn't seem > to have affected him badly in any other area, and of course with no seizures > happening, I am just grateful that something (whatever it may be...) is > working for him. It may be that the diet without benzos on board finally is > now working 100% for him (he had in the main daytime control for his first 2 > yrs on the diet, just the intermittent night ones left), or there is a > slight chance that he has actually 'outgrown' his syndrome fullstop, this > can happen with MAE, but I haven't let myself dream quite that far yet > Ask me again in 12 mths time.... > > > > ----- Original Message ----- > From: " gretchen_kissock " > > > HI , > > I'm glad to hear is doing well. Is he still taking > > topomax? How old are your other two kids? > > Gretchen Quote Link to comment Share on other sites More sharing options...
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