My 20 month old is having siezures....need advice

Re: Re: My 20 month old is having siezures....need advice

Submitted by carsonsmom on Tue, 2006-11-21 - 11:02

Hi my name is Karen ,and I have a 4 year old son who is epileptic .Carson had his first 10 seizures at 18 months and we were also told it was fever related even tho his fever wasnt realy up there . An EEG showed no seizure activity or that there ever was anything wrong in the first place .We were assured it wasn't anything to worry about and went on our merry way .During the next few months we noticed odd things happening . He would be playing and then timber fall like a tree being cut or crawling across the floor and just flop like his batteries ran out . We contacted his family doctor who contacted a pedatrition for us but before we could get an appointment Carson had another another cluster of seizures and was started on seizure meds .That next week we met with the Ped Dr.and he started telling us about the epilepsy statistics. We felt like we had been hit in the face by this news because all along we were told he was fine then one day Bam our world was suddenly changed . We new NOTHING about epilepsy a few people in highschool had it but no one talked about it .I was under the impression that to be epileptic you had to convulse and things like that . We left the office upset , and scared so we decided to go to the book store and buy a book on seizures .It was one of the best purchaces we ever made because with knowledge comes power and with power and knowledge it eases the fear. Over the next few months Carson was admitted several times to hospital with uncontrolled seizures . Finaly in Jan of 2004 he was admitted to local hospital because they couldnt get the seizures to to stop. We were sent by ambulance to the childrens hospltal in the next province where they did a MRI that showed the cause of the epilepsy.There we found out it was caused because his left and right temporal lobes never fully developed .We spent many months blaming ourselves and asking Why?Why?Why?Why our baby what did we do wrong only to realize that the fault lays with no one sometimes epilepsy just happens . I was told that during my pregnancy i likely contracted a virus like the cold or something at the same time his brain was developing . To me my pregnancy was total healthy but i was told that many times we can have a virus that we don't even know we have . Its all a guess and we will probably never know why but its important not to blame yourself. Carson's epilepsy kind of grew with us educating us along the way He started with just turning blue for no apparent reason then it progressed to drop seizures , stiffining, luaghing , crying , yelling , convulsing.At every turn it seamed to get worse. Meds we started didn't seem to help some even made things worst.Right now we are on a combination of lemectal/ valporic acid and he still seizes 1-2 times a day that we are know of.My advice to you is educate yourself and people around you and if your 20month old is having seizures get a helmet it will save a lot of bumps and bruises.Carson wore a helmet for a bout a year .At first I didn't want him to because i didn't want poeple making fun of him but i was surprised by the reactionof most . They were understanding and supportive often telling me they or someone they knew had to were a helmet too, has/had or know someone that has epilepsy.We chose to educate the school where my older boys go they are ages 5 and 7 many kids will ask questions about Carson and epilepsy and I believe that if we educate them now Carson is less likely to have a hard time later being picked on .Hopefully I didnt't babble too much .If you and your family ever want to chat feel free to contact my husband Shawn or myself . We are not experts just parents.