Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Cris, My thoughts and prayers are with you and h too. Sorry i couldn't think of your daughters name at the time i wrote the other post! Brain overload gets us all! It seems the world of epilepsy has the ability to plummet us into the depths of despair only for us to come up again with renewed hope..and so the cycle goes on.... My daughter Leah(2 yrs on the kgd) was just last Friday night having so many sz's she could barely finish a sentence, and yet tonight she is on the telephone entering a singing competition and winning herself a CD....no sz's and so full of life and vitality! Will we ever get used to the ups and downs! love and hugs to you and h, Jeanette, Australia > >Reply-To: ketogenic >To: ketogenic >Subject: how do things go from bad to worse SO quickly??? >Date: Thu, 13 Jun 2002 17:13:11 -0000 > >We have just had THE worst 36 hours EVER...Any time I have to give >h Diastat to break up a cluster of SZ's we are supposed to speak >with the Neuro on-call at CHOB 'first'...I administer first and call >2nd, but that's just me being me...The other morning I called three >seperate times and waited on hold each time for MORE than 10 minutes >each time...finally the SZ's started breaking thru the Diastat--I >knew we were in deep trouble, so I packed the kids into the truck, >called Rod from the road so he could punch out from work and come >with us to the hospital. Long story short, mariah ended up with a >dose of Ativan which did a good snow job on her, but did make her >stop SZing...Wednesday it started all over again, and I ended up >giving her 5mg of Diastat which broke the cluster and she was fine >the rest of the evening...waited on hold AGAIN for another total of >about 20 minutes and STILL didn't ahold of anyone. When the systems >fails, it fails big-time. > >The strange thing here is that in the last couple/few weeks h >has been experiencing drop SZ's, which she has NEVER had before. She >is also experiencing LONGER SZ's and then these crazy clusters that >she has...what gives??? Isn't it bad enough her SZ are uncontrolled >by drugs and diet...do we now have to contend with the types and >duration of SZ's changing??? I know I have very little control in >this whole thing (physically, I mean, not the doctor stuff...)but >ENOUGH already!!! The poor child does not deserve this...and the >doctors think I am insane--someone was mentioning Munchausen Syndrome >the other day at the hospital--so great, now the staff thinks I'm >insane--none of this is happening, right??? I just want >attention...YEAH RIGHT!!! Then one of the Fellows says it's probably >Lennox-Gastaut that we are dealing with. I KNOW THAT, I'm the one >that has been pursuing that for at least a year now. My issue with >that is that THEY won't do genetic testing to give us more of an >answer...and LGS DOES have a genetic component to it. > >Am I the only one who is ready to start grabbing these darn white- >coated docotrs by the shirt-collars and give them a little education?? >They say try this drug and that drug, or hey, I know--let's apply the >VNS, even tho it probably doesn't have much better odds of doing any >good at this point. Why can't they CARE more, or at the very least >admit they don't have ANY answers. I have requested admissions over >and over to the hospital and they won't--I want another long term >monitor since we are seeing this big change in type/pattern...they >see no need. h hasn't been to school since Monday due to having >and recovering from her SZ's...she is going batty being around here >so much during the day, and then SZing in the afternoon. I hope she >does OK today--i need to get out of this house for awhile...I feel >aweful eveing typing that, but I am so emotionally spent right now, I >don't know if I can DO anymore. > >Sorry this turned into a rather long and repetitive vent...I guess >it's better to let loose with people who understand than to keep it >inside and have it eat a hole in my soul. > >Thanks for listening to me yet again ) >Cris > _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 cris, i feel your pain. my daughter isabela and i have been walking in your shoes for almost a year now. the better and worse times are so hard. she is on three meds, the diet and VNS and all help and we have better days and horrible days still. i have to say all of the treatments she has had, the diet, VNS and meds all do help and i wish we would have total control like so many of the kids. we can have a great week meaning maybe 40-50 seizures a day or 200 or so seizures a day. no rhyme or reason. just intractable epilepsy. my only saving grace is our great epipileptologist. i am a very aggressive mom, like you and all we want is for our children to have quality of life and i pushed and pushed and we gave every therapy a couple of months and with it working but not optimally we went for the diet after not total control with the meds. then diet helped greatly for awhile and then we kept the meds and diet and have gotten the VNS and that has definately helped i think with subclinical seizures which has given her a better quality of life. i wish there was something i could say to make it all better. our physician says isabela is at risk for LGS also. we have tested her for every metabolic, genetic, gosh knows what else and nothing, no answers.i am so glad all is okay but it will never be okay. we live on a roller coaster. where do you live? just curious about dr.s? i dont know why they wont try any other treatment options, the protocal our dr. uses is tried and failed 4 or more meds, not complete control with the diet, the VNS is a very good treatment option. it only works(total control) for 1/3 patients, 1/3 have some control, 1/3 doesnt work for, but it is worth the effort as you mentioned. please email me, how old is mariah? tasha mom to isabela 23 months > >Reply-To: ketogenic >To: ketogenic >Subject: Cris >Date: Fri, 14 Jun 2002 21:35:20 +0930 > >Cris, > My thoughts and prayers are with you and h too. Sorry i >couldn't >think of your daughters name at the time i wrote the other post! Brain >overload gets us all! > It seems the world of epilepsy has the ability to plummet us into the >depths of despair only for us to come up again with renewed hope..and so >the >cycle goes on.... > My daughter Leah(2 yrs on the kgd) was just last Friday night having so >many sz's she could barely finish a sentence, and yet tonight she is on the >telephone entering a singing competition and winning herself a CD....no >sz's >and so full of life and vitality! Will we ever get used to the ups and >downs! > love and hugs to you and h, > Jeanette, Australia > > > > > > >Reply-To: ketogenic > >To: ketogenic > >Subject: how do things go from bad to worse SO quickly??? > >Date: Thu, 13 Jun 2002 17:13:11 -0000 > > > >We have just had THE worst 36 hours EVER...Any time I have to give > >h Diastat to break up a cluster of SZ's we are supposed to speak > >with the Neuro on-call at CHOB 'first'...I administer first and call > >2nd, but that's just me being me...The other morning I called three > >seperate times and waited on hold each time for MORE than 10 minutes > >each time...finally the SZ's started breaking thru the Diastat--I > >knew we were in deep trouble, so I packed the kids into the truck, > >called Rod from the road so he could punch out from work and come > >with us to the hospital. Long story short, mariah ended up with a > >dose of Ativan which did a good snow job on her, but did make her > >stop SZing...Wednesday it started all over again, and I ended up > >giving her 5mg of Diastat which broke the cluster and she was fine > >the rest of the evening...waited on hold AGAIN for another total of > >about 20 minutes and STILL didn't ahold of anyone. When the systems > >fails, it fails big-time. > > > >The strange thing here is that in the last couple/few weeks h > >has been experiencing drop SZ's, which she has NEVER had before. She > >is also experiencing LONGER SZ's and then these crazy clusters that > >she has...what gives??? Isn't it bad enough her SZ are uncontrolled > >by drugs and diet...do we now have to contend with the types and > >duration of SZ's changing??? I know I have very little control in > >this whole thing (physically, I mean, not the doctor stuff...)but > >ENOUGH already!!! The poor child does not deserve this...and the > >doctors think I am insane--someone was mentioning Munchausen Syndrome > >the other day at the hospital--so great, now the staff thinks I'm > >insane--none of this is happening, right??? I just want > >attention...YEAH RIGHT!!! Then one of the Fellows says it's probably > >Lennox-Gastaut that we are dealing with. I KNOW THAT, I'm the one > >that has been pursuing that for at least a year now. My issue with > >that is that THEY won't do genetic testing to give us more of an > >answer...and LGS DOES have a genetic component to it. > > > >Am I the only one who is ready to start grabbing these darn white- > >coated docotrs by the shirt-collars and give them a little education?? > >They say try this drug and that drug, or hey, I know--let's apply the > >VNS, even tho it probably doesn't have much better odds of doing any > >good at this point. Why can't they CARE more, or at the very least > >admit they don't have ANY answers. I have requested admissions over > >and over to the hospital and they won't--I want another long term > >monitor since we are seeing this big change in type/pattern...they > >see no need. h hasn't been to school since Monday due to having > >and recovering from her SZ's...she is going batty being around here > >so much during the day, and then SZing in the afternoon. I hope she > >does OK today--i need to get out of this house for awhile...I feel > >aweful eveing typing that, but I am so emotionally spent right now, I > >don't know if I can DO anymore. > > > >Sorry this turned into a rather long and repetitive vent...I guess > >it's better to let loose with people who understand than to keep it > >inside and have it eat a hole in my soul. > > > >Thanks for listening to me yet again ) > >Cris > > > > > > >_________________________________________________________________ >Join the world’s largest e-mail service with MSN Hotmail. >http://www.hotmail.com > > > > " 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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