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

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
    

And we wait...

Since insurance gave us the go ahead for the SCN1A  testing....I will wait another 4-5 weeks for the results. No seizures at all this past week....a big hallelujah to whoever answers our prayers. I hope more parents will reach out and tell their stories....I know how frustrating it is and it helps to have someone to talk to.

New video

 my latest movie for Conner   Conner's last 3 seizures

Welcome fall!!!

Today it is currently 47 degrees outside...I love it! Perfect weather for hot vanilla caramel coffee and snuggling with my little pumpkins under the blanket. Insurance has decided to pay for the SCN1A gene test....although I fear it will be normal, it's another step along the way. Don't take me wrong but if it wasn't normal we would have an answer, a thought that we could help control these seizures makes me happy. No more since Labor Day!! Today is a short post as I need to finish my chemistry homework, ironically about genetic mutations, DNA, and RNA. Life can be funny like that!! God Bless...........

What a week!!

     This first full week of September proves to be a busy one, for me and the boys!We have all had the sniffles. Conner had appointments with genetics and ENT in Kansas City. I received a letter yesterday from the genetics doctor for insurance so that Conner can be tested for the SCN1A gene. Hopefully it's a go from insurance. I don't think there are very many options after this one, except for the neurosurgery consult and maybe a VNS monitor. We were at about one seizure every 4 weeks and then we went 6 weeks without one. This week he has had 4. Just when I think he may be moving forward, there always seems to be a step back. I am still convinced his new medication Trileptol is the main reason of the seizures slowing down. I sit patiently by my phone today awaiting the call from his neurologist. Yesterday they assured me that seizures can increase with a cold or illness. Who knows....
     Minus the seizures this week has been great! The weather is finally decent. Conner learned how to ride his bike, Shane learned how to write "daddy" and tell time, and Conner figured out how to climb my entertainment shelf and turn on the radio.
      In my next post in a few days, I will go over some of the tests he has had done. In the meantime God Bless.....

A year later

     So technically it's been over a year since the first seizure. Conner was a healthy baby...until around 13 months old. I was on the way into our local Dillon's and I was holding Conner. Shane, our 4 year old, was by me playing and talking to Conner. The next thing I knew Conner was leaning backwards in my arms, pale and blue around the mouth. I rushed him to ER and was told he was dehydrated. Three days later, on a Sunday, my husband witnessed Conner have a spell in the car seat. I believe he said something to the effects of " dammit" and drove my van to the hospital like it was on a nascar track. Conner was admitted to the hospital for "syncope".  I believe we were dismissed three days later, and sure enough he had more "blue" spells. Some in the car and others while being held.
     I finally called the ambulance and he was rushed to the hospital again. By the time he got there he was fine, and we were dismissed. We didn't even make it to the car and he had another one. Finally a doctor seen him have one, and we were taken by ambulance to PICU three hours away.
     So here we are almost 18 months later, and 113 seizures later.  Thousands of hours spent online, on the phone, and at the doctors. I can't even begin to explain how many test Conner has had done. I will leave that for another post as maybe our story will help someone else. We get asked all of the time...how do you do it, handle the seizures? My answer is you don't handle the seizures, they handle you. When you watch your child turn blue, and become unresponsive it literally takes your breath away. Your chest tightens and you pray for that moment to stop and for your loved one to be OK. You can't plan your life around these moments but you have to be prepared for them. Until next time....