Wow, this week has been crazy! We went to the neurologist again Thursday. I really hate 5 hour long car trips-one way! We learned that since this is technically our 5th medication, Conner is running out of options. Trileptal will be increased again if he has another seizure. If this doesn't work our case will be taken to the epilepsy council. They again mentioned the brain dissection, a procedure that makes us nervous!! I am anxious to see what the MRI shows and if anything has changed in the last year. I only have to wait three weeks until this is done. We are being referred to speech pathology there for his tongue and again because he doesn't really talk right. The lady here does great work but they feel when Conner has his tongue clipped at 6 weeks it wasn't clipped right. My baby never catches a break. Tuesday he fell and put his bottom teeth all of the way through his bottom lip, resulting in ER and liquid stitches. This year has been long, but I am thankful for the answers we have received.
Several people comment on breath holding spells, on youtube.com and how Conner may just do this when he doesn't want to do something. My comment to you, no he does not hold is breath because he will be walking and fall over into a seizure. We have 14 positive EEG's that confirmm left temporal lobe epilpesy, as well as seizures that occur while he sleeps. Second, he is always in the middle of an activity before a seizure ( like playing) which he enjoys. May everyone have a Merry Christmas, and remember to be thankful for all of the things in your life. So many blessings are overlooked!
Aileen
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