Off medicine

One seizure two years ago after stopping his Trileptal. We restarted it and are now seizure free again for 1 1/2/ years. We  just started weaning the Trileptal and fingers crossed this time works!! Conner does have a few learning delay's but is making progress in school.

Conner has officially been seizure free for 2 years!! I am so thankful for this, we continue medication and doctors appointments. If there is ever a question I can answer, I will continue to help. I know how scary it is when there seems like there is never an answer!!

Conner's changes

Conner has been interesting lately. He had an EKG and lab tests that were all normal. I took him to ER on Saturday for ear drainage as he had an ear infection and holes from tubes being removed. No fever....but a heart rate of 140-150. Usually he is between 110-120. The doctors have referred us to cardiology from the spell a weeks ago but he has had his heart tested several times because of the cyanosis. Neurology thinks he may be having a change in his seizures but wants to cover all bases especially since he was interacting with me. Do these things ever get easier?? I pray that he will outgrow these someday!! I always welcome advice, and although I do not comment back always I do read posted comments. I also am willing to help other parents and have answered several questions via YouTube. God Bless and Happy New Year!

Confusion

Conner never ceases to amaze me, or his Epilepsy. Yesterday, I walked into his room to tell him it was time to go to sleep and he was laying on his bed playing and talking. Normal yes, but his lips were bright blue/purple, as were his eyelids, and his face was pale. Pretty sure it wasn't a seizure because he was having a conversation with me and stacking blocks. No post epileptic nap, or movements. Has anyone else had this problem???

Breakthrough Seizures

Conner has had 5 breakthrough seizures since the beginning of August. We went to the neurologist last week, and his Trileptal was increased to 5 ml instead of 4 ml BID. I hope this stops these seizures. I had lind of relaxed a bit in the car since he hadn't had one since last November. I looked back and he had his famous "blue" lips and huge dilated eyes. He did not jerk, or go to sleep afterwards but I could not get him to respond to me.  There are some great articles on breakthrough seizures. We are scheduled for another MRI in March. So much for being seizure free...

http://www.touchneurology.com/articles/breakthrough-seizures-approach-prevention-and-diagnosis

Sorry life has been hectic! Conner has not had a seizure in over 6+ months which makes life a little more relaxed. I still keep a close eye on him but have learned not to be so "protective".  We still are struggling with speech delays, but he is slowly progressing. If I can ever be of assist to anyone, please let me know!!
God Bless,
Aileen

Almost 6 months seizure free!!!

Sorry it's been so long without a post, our lives have been kind of hectic! Great news, since removing Keppra and just sticking with Trileptal, we have only had 1 seizure in six months. (For the record, Conner was averaging 10+ a month, if not more) I cannot believe he turns 3 tomorrow and has already been through more than any child should. I am sure all parents with an ill child feel that way, overwhelmed and so frustrated. I still find myself checking the rear view mirror for blue lips and rolled eyes. Our doctor says that if we go 2 years seizure free, we can start to reduce the medication. He is hopeful Conner will outgrow this but we are aware that Epilepsy never completely goes away. I thank everyone for continued support, God Bless!
Aileen