MRI

Conner had an MRI on Friday and it was normal. I am glad. He has been seizure free since my last post, and we continue on just Trileptal. I see progress everyday with his speech,  although it is slow. I am almost afraid to get my hopes up that the seizures may finally be controlled. I find myself always watching over my shoulder to make sure he is OK. I hope everyone else is having some luck, I see a lot of new research being done for Epilepsy. Fingers are crossed that this helps more people with uncontrolled seizures! God Bless,
Aileen

Merry Christmas

     I think Conner had a seizure today while I was in the shower. He had been up maybe 2 hours and when I was done, I found him asleep on the couch. Not like him as he usually has way to much energy. He slept three hours and is now on hour two of another nap. He isn't sick and the only time he sleeps like this is after a seizure. I finally got an account to post comments today and have left a few. I am looking forward to January 3, 2012 when he undergoes another MRI. I really hope something is lurking on the left temporal lobe and causing these seizures. That would the simple answer, minus having brain surgery. There was nothing a year ago, so I don't hold my breath. I shudder to think we won't know if he can outgrow this until he's 12/13. That's another 10 years away. My heart aches for everyone who has dealt with seizures for so many years, how do you do it??
     Christmas is in a few days, may everyone have a wonderful day with friends and  family and I am adding seizure free! God Bless!
Aileen
I am not alone at all, I thought. I was never alone at all. And that, of course, is the message of Christmas. We are never alone. Not when the night is darkest, the wind coldest, the world seemingly most indifferent. For this is still the time God chooses.”
    

Another trip to the doctor

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

Seizure #1 Vetern's Day

At the beginning, eyes big, lips cyanotic...not responding to name

What a week!

     It's been awhile since I posted, and a lot has happened including the answer to what is wrong with Conner. His SCN1A is normal, and we just finished a 4 day ambulatory EEG. During these four days he was not given any medicine and for the first time in 18 months we caught 4 of the episodes that occur most often in the car seat. Needless to say, the moment I saw him have the seizure I felt like thousands of pounds just lifted off of my shoulders and I cried. This was Wednesday and yesterday he had 3 more on the way to the hospital. A total of 9 in 5 days, made me a bit on edge. So the doctor called today and Conner has been diagnosed with complex partial seizures that are located in the left temporal lobe. All 4 seizures started in the exact same spot. Now it's another MRI, and an appointment in about 3 weeks. I am not sure of the plan, but the doctor wants to be aggressive. As of today 18 months later, Conner has had 121 seizures. I am now sure that the car seat ones happen partially because of the sunlight. I am thankful to know the reason, now to find a way to control them. My heart and prayers to everyone who has epilepsy,  seizures or a sick family member.

     "Count your blessings. Once you realize how valuable you are and how much you have going for you, the smiles will return, the sun will break out, the music will play, and you will finally be able to move forward the life that God intended for you with grace, strength, courage, and confidence." Og Mandino

Fall is in the air...

 As I look out the window I see a blaze of oranges sweep by, and I realize that today is the 19th. Crazy thing to remember but 4 weeks without a seizure make me super happy!! We will be going for a ambulatory EEG next month, it will remain on 4 days. I am going to pray for at least one seizure during this time only because I want the doctors to have some answers. We are still waiting for the SCN1A test results to come back...hopefully it will only be a few more weeks.

We went to the pumpkin patch this weekend and the boys had such a fun time...I will try to post some pictures here in the next few days.  Conner continues with speech therapy weekly, and has made some great progress. Another reason I pray for a seizure next month. Maybe it's connected to some of his speech difficulties?? So many questions....enjoy the beauty of the season and god bless!

Aileen

Monday Morning

     I just loaded the kids in the car, the same car we were in 100 times in the last 3 weeks. I hear smacking, and one look in the rear view mirror shows blue lips, wide eyes that are locked in a stare, and uncontrolled movement of two little arms that were just playing with a toy. Thankfully, it only lasted about a minute, and I have discovered he also urinates with these as well. So much for the hope he didn't do that.
     My biggest fear is explaining to my baby that he isn't normal and then saying "hey, we don't know for sure what is wrong with you." No doctor can ever convince me these are not seizures, between all of his test I know it's not:
1. Heart problems
2. Sandifer Syndrome

What it may be
1. Simple Partial Complex Seizures
2. ???? the doctor doesn't know
     Frustration clouds my day today, a big storm cloud that looms just over the horizon. I cried again today, wishing I could make him well. I say prayers for all of the families I know affected by seizures...god bless