hi everyone,
my name is cecile, i have had epilepsy from when i turned 13 & i am now 32.. however i can reasonably handle my seizures thankfully as my 8yr old daughter baileigh was diagnosed with epilepsy when she was 1... i will never forget that day she kept going in & out of seizures & only wanted to sleep so we took her to the doctor as thats what i thought it was...
when we got there, a doctor took us in & looked at her, he told us that she was prob sick & was just febral seizures & that we should hurry up & leave the hosp before anyone stopped us!!! however on the way out she had about another 4 so they just rushed her into emergency & we were in the hosp for about 2 wks while they tried to get it somewhat under control...
her seizures have changed a lot from then thankgoodness however now she does have trouble breathing, i am pretty sure she has tonic clonic seizures but has recently had a few focal seizures!!! the actual seizure part doesnt last very long, but sometimes it can take her about half an hour before she is coherant again... she gets really scared at times as tho she sees something scary othertimes she is as tho she is looking for something & doesnt know where she is she will even get off her bed & walk around the house!!! & othertimes she just has a huge smile on her face & is laughing at something.... it almost always has to do with her needing to do a wee however she is scared of the toilet so that is really hard to get her to relax enough!! she has previously locked herself in the bathroom & fallen off the toilet smashing her 2 front teeth & having a seizure....
her learning has always been stunted from the epilepsy she has trouble retaining information, & that was really pronounced when she was taking lamictal for a couple of yrs so much so that the teacher didnt believe she had epilepsy just thought she was being a trouble maker!!! until she finally got bais records at the end of the year!!!
thankfully she got a really gd teacher last year that got really involved she got the school dressing up in purple & donations going to the epilepsy foundation she informed the class all about epilepsy & even had a purple day activity for the kids in the class & they got to have purple food & stuff like that... anyway she had a couple of really big seizures in the 1st few weeks which is why the teacher wanted to inform the class & get them involved!!
once the doctor put her onto keppra the seizures stopped for a few mths & her learning abilities improved, she was still nervy & needed assistance with anything new & stuff but she learnt so much last year they put her in the class next to where she was last year so she wouldnt be so nervy this year & the teachers have commented on how much she has learnt... its a pity tho that she didnt stay seizure free for very long.. however the seizures were usually late at night or early hrs of the morning so we speand our nights listening out for her just incase (she still having at least 1 a night)
saw the nuro the other day & she has decided her keppra is too high & to take her off of lamictal & introduce topomax to the keppra... so we got the topomax sprinkles as she is not good with tablets yet!!! so far has only had it lastnight & she still had a seizure so i am really nervous about how it is going to be after these 4 weeks while weaned off lamictal & weaned onto the topomax...
my question in the forum is if anyone else has experienced anything i have mentioned or if anyone has had the topomax with keppra & if they think it is a good mix or not.... any experiences would be really good
thankyou
