Help Needed (kayakmom Etc) - Epilepsy Message Board

niecsey · 10-05-2005, 04:15 AM

Hi all took little one for her appnt yesterday seen an older doc and he told us straight... if she were my 9 yr old daughter she would of been on meds ages ago! GULP! He also told me she has left temple epilepsy? sorry l dont know all the technical words as l was gobsmacked and got a lot of info in a size too big to swallow! He told us it was up to us but he said if shes on meds it will give her a chance of having it supressed so after 2 years of the med it might never happen again. He also give us his number to ring him after we had time to think about things and said he would have his prescription pad ready. WOW l feel like ive been scalded l cant even remember the name of the med other than its a syrup and it begins with C (stupid l know) lm all mixed up and want to do whats best. He made me see how dangerous it is to not treat it and told us she shouldnt be swimming or riding a bike untreated! Until last month that we know of all the seizures happened whilst asleep or before waking the last one a few weeks ago she was wondering around confused etc (l posted about this one) I think l just want some reassurance of you guys its a massive step and im scared thank you all for been here any replies greatly appreciated xxx niecsey

buliem · 10-05-2005, 08:45 AM

Niecsey,
Don't beat yourself up about it. We all do the best we can. Patrick went undiagnosed and unmedicated for years. I didn't realize he was having absence seizures until his eyes started rolling up in his head. I just thought he was inattentive. It then took 3 months to get into the epilepsy clinic. I watched him have those seizures for an entire summer. His GP said it was no big deal. Yeah right. I didn't know about kindling. I think if I had caught it sooner he might not have had progressed to TCs/grand mals. Coulda, shoulda, woulda you know?

Anyway just keep a close eye on her and watch for side effects. I don't know what med it is that she's on but she'll probably experience some sleepiness at first. Keep us posted and good luck on controlling her seizures.

Take Care,
Julie

niecsey · 10-05-2005, 10:22 AM

Hi Julie shes been prescribed 75mg carbamazepine twice a day were starting the med on the 15th Oct as she has a busy week ahead of her at school and will not be able to take part if doped up to the eyeballs! Its scary!! You know with not having med pressed before now we have it makes it more 'serious' if you know what l mean.. we dont know how long the siezures have been going on because we only realised oct 2003 when she didnt feel well and slept with us and because shes been a 'mammy type of girl' wanting to sleep with me or we wouldnt of known for god knows how long! I will eb posting here alot! The thyroid board will be taking a 2nd seating now (me with hyperthyroidism) does anyone know anything about left temple seizures? (probally havnt pronounce dit right lol something to do with my stress head at mo

Thanks again for replying good luck to you and yours niecsey x

kayakmom · 10-05-2005, 02:32 PM

SOrry I have not been in for a few days and missed this one! I really hope the med will help her! I know it is so hard to get to that point and be told you HAVE to.....I am impressed that he let you go home and think it through and did not just push the script into your hand!!

It is a blow, but try to think of it as a start to something better! Really hoping the Carbatrol will help her. YOu start at 75 and then do you go up from there? Be patient with these meds. Best to start out slow and work up and it takes 4-6 weeks to get adjusted. Some of the side effects can ease in time.

(((hugs))) Gin

niecsey · 10-06-2005, 08:17 AM

Hi hunx lm, worse today

lm terrified l actually had a panic attack

lm a volcano waiting to explode sooner rather than later. I believe the idea is to start her on alow dose then move up did you feel like this or am l been stupid? Im terrified and the love l feel for her is unmeasurable beyond belief,,,,, lm so confused l dont know what the heck lm doing or where l am. Oh forgot to mention l found out the reason why she gets lots of phglem.......... EPILEPSY! Ive been taking her to docs for yrs they even thought she had asthma but didnt weird aint it and stomach aches everythings coming together now its takes a heck of alot for Kym to moan about anything but l can see loads of things l couldnt before! Im going off now lve got myself upset sorry