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HELP** seizures may be metabolic???
Mon, 08/06/2007 - 22:30Topic: Parents & Caregivers
well in and out of hospital many test cameback negative few are still pending neur. suggesting janelle may have a metabolic problem has 'anyone out there' heard of such, and treatment wise.. any hope for janelle to ever be able to control her sz's she is currently taking keppra, topamax and pheno. 3 months on the 8th
Re: HELP** seizures may be metabolic???
Submitted by sushina on Sat, 2008-05-31 - 03:37
well its been a long time since i've logged in i'm glad i came across your comment a drug that seem to help janelle the most is trileptal, she is also on toppamax- just recently she started the keto-genic diet :) which has been working out, but not made a huge difference .. since 11/07 janelle became seizure free i change from my neuro to an epilepsy specialist i live in california we go to ucsf' great people since then, janelles had a muscle biopsy still pending results numerous eeg's, mri's ect they seem to really take charge of the situation :) we are also seen by a gentics recently she has scn1a test done which came back abnormal her dna coding is very different both I and my husban both got blood drawn to see if either one of us have the same abnormaltie if we do then thats not causing janelles seizures and delay but if we don't then thats why she is seizing and delayed and would also make a mark in the medical book and possibly be named after a gentic disorder where her blood work was sent (athena)? they said they have no data with anyone similar to janelles dna ?? crazy
i hope all works out for your family its been very differcult for us' one thing i learned if your not getting the treatment you think you should-- go to another dr.. call your insurance get a health coach, look for specalist in your area don't settle for anything less- i thought my daughter would have never stopped seizing' until i got another opinon, we still have a long ways to go, and i'm sure finding the answer wont change our situation but it will bring me peace- janelle is severly delayed, legally blind, can not hold her head up does not smile thu she does eat well from a bottle'. every baby is different this is how my baby is- she has been this way since birth i've meet alot of other people whos babys seized for longer period then janelle and they are more aware, functioning ect.. your story maybe different'
thankfully i have my mom to depend on its hard to raise a special needs baby i appericate all the help i can get i'm sure your daughter/son feel the same its tough and i wish i could tell you else wise- best of luck!
well its been a long time since i've logged in i'm glad i came across your comment a drug that seem to help janelle the most is trileptal, she is also on toppamax- just recently she started the keto-genic diet :) which has been working out, but not made a huge difference .. since 11/07 janelle became seizure free i change from my neuro to an epilepsy specialist i live in california we go to ucsf' great people since then, janelles had a muscle biopsy still pending results numerous eeg's, mri's ect they seem to really take charge of the situation :) we are also seen by a gentics recently she has scn1a test done which came back abnormal her dna coding is very different both I and my husban both got blood drawn to see if either one of us have the same abnormaltie if we do then thats not causing janelles seizures and delay but if we don't then thats why she is seizing and delayed and would also make a mark in the medical book and possibly be named after a gentic disorder where her blood work was sent (athena)? they said they have no data with anyone similar to janelles dna ?? crazy
i hope all works out for your family its been very differcult for us' one thing i learned if your not getting the treatment you think you should-- go to another dr.. call your insurance get a health coach, look for specalist in your area don't settle for anything less- i thought my daughter would have never stopped seizing' until i got another opinon, we still have a long ways to go, and i'm sure finding the answer wont change our situation but it will bring me peace- janelle is severly delayed, legally blind, can not hold her head up does not smile thu she does eat well from a bottle'. every baby is different this is how my baby is- she has been this way since birth i've meet alot of other people whos babys seized for longer period then janelle and they are more aware, functioning ect.. your story maybe different'
thankfully i have my mom to depend on its hard to raise a special needs baby i appericate all the help i can get i'm sure your daughter/son feel the same its tough and i wish i could tell you else wise- best of luck!