Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Hi , If tough times build character, I've often marveled at parents of kids with seizures. One of the things that makes it so tough is not knowing what the future holds. It seems to range from dire to normal. Now how does that effect character development in us? We strive to go on living happily admist all the worry and uncertainly. I guess uncertainty is a good thing. I mean, at least it offers hope for the very best. But what a tough road, with all the ups and downs. We're all traveling this road together. Was 's last seizure in Dec. '03, over one year ago? If it was, perhaps has outgrown the seizures already> I doubt you would allow yourself to be that optomistic. I don't think any of us would after all the dashed hopes. We don't know what these " events " are that Ethan is having. But the doctor feels we can deal with them in ways other than medicaiton, which is great. We are going to try biofeedback. The diet is still important, because we think it is keeping the real seizures at bay. There is the chance, but it seems slim to me (too good to be true) that the seizures have stopped becasue he is off medication. I imagine we will lower the ratio to 3.0 in a month or so and see if he does just as well at that ratio. YOu hit my feelings on the nose, and it seems to be your experience, too. For the first time in 3 years, I am daring to dream of a normal life for Ethan. He just might live on his own someday and have a family, and a meaningful career... We are off to buy him a rat today. When he started the diet, I asked him to think of a reward he would like to work for. I strongly suggested a game cube or whatever those things are. I even had my 13 year old build it up, which he did with no arm- twisting what-so-ever (because he wants one, too). But Ethan has settled on a rat for his keto-diet reward. At least it isn't a snake. Gretchen > Hi Gretchen, > MAE is Myoclonic Astatic Epilepsy of early childhood, otherwise known as > Doose Syndrome. In a similar spectrum to Lennox Gastaut, but with different > predominant seizure types (myoclonics absences and drops, rarely tonics and > focals) and a different EEG pattern. > Spontaneous remission is definitely possible with this one, often without > any specific treatment changes, it can one day just 'stop'. Average duration > of the seizures in those who outgrow it is 1-3 yrs after the first seizure. > 's last seizure in late Dec 03 was 3 yrs 6 mths after his first one, > so dunno whether this has been his fate or not. One can but hope.... > Prognosis varies, some are absolutely fine cognitively etc despite the > mths/yrs of persistent seizures, others go on to have quite severe delays. > Some stop having seizures, some don't, some respond to meds, some don't...so > a huge range of possible outcomes. > Percentages for likelihood of remission vary depending on which journal > paper you read, but it seems to be pretty much a 50/50 scenario on the > whole. > Hypersensitivity to meds and a tendency to paradoxical seizure reactions > from quite a few AEDS seems to be a common trait with a lot of Doose kids, > with the keto diet and ACTH (steroids) are now being touted as the most > effective treatments for this condition. So your expereince with Ethan and > adverse AED reactions is certainly one we can relate to, as can many other > parents of Doose kiddies that I am in fairly close and regular contact with. > So these 'episodes' are being termed, what? Psuedo seizures sof some sort? > Cripes, like the ones we DO know about aren't enough to worry about? > Hold onto that 'life may actually be normal' concept...things are sounding > positive enough over that way to certainly be daring to think that way > Know the one though, do I or don't I set myself up for yet another > fall.... > > > > ----- Original Message ----- > From: " gretchen_kissock " > > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Hi Gretchen, below in *** ----- Original Message ----- >Now how does that effect character development in us? We > strive to go on living happily admist all the worry and > uncertainly. I guess uncertainty is a good thing. I mean, at > least it offers hope for the very best. But what a tough road, with > all the ups and downs. We're all traveling this road together. ***Indeed we are, and as far as uncertainty is concerned, well yes, it sure keeps us on our toes, but gimme a settled predictable boring life any ole' day :) > Was 's last seizure in Dec. '03, over one year ago? If it > was, perhaps has outgrown the seizures already ***Last seizure was 24 Dec 03, so still 5 and a half mths to go before we reach the 12 mth mark. Am I ticking the calendar each day that passes? You betcha >I doubt you would allow yourself to be that optomistic. I don't think any of us > would after all the dashed hopes. ***No I don't allow myself the luxury of that thought yet. Hubby is more optimistic than me, he thinks has outgrown, I am not so sure. My gut says 'not yet', wish it didn't, but it does. > We don't know what these " events " are that Ethan is having. But > the doctor feels we can deal with them in ways other than > medicaiton, which is great. We are going to try biofeedback. ***I don't know much about biofeedback, except what I have read on here and on another webring. If you try an archive search you might find some posts from others who have tried it. > The diet is still important, because we think it is keeping the real > seizures at bay. There is the chance, but it seems slim to me (too > good to be true) that the seizures have stopped becasue he is off > medication. I imagine we will lower the ratio to 3.0 in a month or > so and see if he does just as well at that ratio. ***What is his actual diagnosis? Does he have one? > YOu hit my feelings on the nose, and it seems to be your > experience, too. For the first time in 3 years, I am daring to > dream of a normal life for Ethan. He just might live on his own > someday and have a family, and a meaningful career... ***Scary isn't it. For so long we have thought this will not be the case with , where's that crystal ball?? > We are off to buy him a rat today. When he started the diet, I > asked him to think of a reward he would like to work for. I > strongly suggested a game cube or whatever those things are. I > even had my 13 year old build it up, which he did with no arm- > twisting what-so-ever (because he wants one, too). But Ethan has > settled on a rat for his keto-diet reward. At least it isn't a > snake. ***Um, a rat? Good grief Not much to choose between a rat and a snake in my opinion, but I am a bit squeamish with critters like that. Thank Goodness isn't that way inclined, cos like you I'd probably give it if it was what he really wanted. We really, really want to get him a puppy actually, but I just can't handle the thought of a new responsibility like that right now, mebbe next yr if and when things are still stable on the seizure front. Happy rat shopping, if that's the right expression > Gretchen ** Quote Link to comment Share on other sites More sharing options...
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