Friday, November 21, 2014

when seizures become a part of life

we went to riley childrens hospital on thursday to see lexis neuro down there. we knew going down there that there was little options left to treat her epilepsy as thats what her neuro close to home has said. we went with an open mind. first all the neuro was happy with the way lexi looked this time. much better than in july when her body was rejecting her vns. she went over her meds and said the only meds left for us to try is phenobarbital and dilantin. she was going to start her on pheno but i then asked about the ketogenic diet. reason i asked was because its not meds and its a diet and could possibly help. she said it wont help with the focal seizures but her other types it might. so we go back in 3 weeks to the keto clinic and talk to the dieticians. im hoping we can at least try it so we can say we have tried everything. i understand it can be part of lexis life that she will always have seizures but i dont ever want to give up on her. i want to know i have tried everything

Saturday, November 1, 2014

halloween and random updates

the past couple weeks have been busy. we went to zoo boo last weekend and it was alot of fun. it was our first time going and i believe we will be going again next year. lexi enjoyed it alot i think. we also went and got pumpkins to paint and she had a blast painting her pumpkin. we paint pumpkins because 1 its something she can do and 2 i always paint mine purple to help raise awareness for epilepsy. we went trick or treating last night and it was freezing. we only lasted 30 minutes but we went to a few houses and got a bit of candy. i probably would have lasted longer but we went with my sister in law and her kids so they was complaining it was too cold. as far as medically speaking lexi is doing good. she has lost weight so we are supplementing more and her gi dr has referred her to feeding therapy. what her issue is with feeding is she has weak muscles so she doesnt like to have to feed herself or eat stuff that takes work to eat. her developmental ped referred her to a new ent who specializes in airway issues in hopes to figure out what to do about her jaw. neuro has increased her lamictal in hopes that we can start weaning banzel soon. we see her other neuro in a few weeks so im anxious to see how that goes. other than that everything has gone well shes still sleeping in her own bed and that has been the best decision we have ever made.