Monday, October 31, 2011

Monday

Ben woke up great this morning, but ended up having 2 tonic clonic (grand mal) seizures at my mother in laws house during his nap.

I left school for a minute to bring him a clonazapam and while I was gone I was able to talk with the doctor's nurse.  They advised that we increase the clobazam.  So we will now give him 10 mg of clobazam 3 times a day.  There aren't any increases left. 

The doctor said that because it's not really working that we need to start the process for the ketogenic diet.  They said it takes a little time to get it all scheduled and that someone would be calling us soon. 

We don't even know what to think at this point. 
Leeon and I said through this whole thing that we need to just focus on right now. 
Don't look too far ahead to the diet or what not - just focus on the current med at the current dose. 
To take it one step at a time. 

But here we are. 

I hope they call tomorrow - I have lots of questions to be answered.

We are thanking God that:
~  the myoclonic and drop seizures still have not returned
~  my mother in law is able to watch Ben while we are at work
~  that my principal and team mates are so willing to help and I was able to leave work to help get Ben settled

We are continuing to pray that we will have wisdom to know what to do and for a complete healing for Ben.

Sunday, October 30, 2011

Sunday

Ben had another tonic clonic (grand mal) seizure this morning before he woke up.  We are thankful that he made it through most of the night without any.  This seizure was shorter too so that's a good thing.

We haven't seen any myoclonic or drop seizures today at all!  I love seeing my little guy without that helmet!

I will call the neurologist in the morning to see what we should do.  We just increased Clobazam on Saturday so I want to wait before we increase again (despite the fact that he had another seizure this morning).  Given that we only have one more increase, I'd like to use it when we know for sure it is necessary.

A Rollercoaster Ride

It seems that epilepsy can be a rollercoaster ride and we have definately experienced that lately.

On Thursday, October 20th Ben had 24 myoclonic and drop seizures.  His average is about 10-12.  On Friday he had about 14.  My parents came into to town that evening and we were thrilled to have them with us.  On Saturday, we increased the clobazam and he had a few drops - about 7.  Sunday morning he had a tonic clonic seizure while asleep.  It lasted about 2 minutes, he stopped breathing, and it was a pretty typical seizure for him.  We braced ourselves for a day filled with more myos and drops.

But they never came!

In fact he did not have a seizure on Monday, Tuesday, Wednesday, or Thursday.  We were rejoicing!  It seemed like Ben was coming back.  He even played in his T-ball game on Thursday night!

On Friday, during his nap he had another tonic clonic seizure.  My mother in law said that it was short - only about 1 minute.  We called the doctor and we would increase his clobazam again in the morning.

Friday night, he had numerous tonic clonic seizures - 7 in all.  They started at 10:00 pm and his last one was at 6:00 am.  It seemed like everytime we laid our heads down, one of us was yelling for the other to come help.  We administered diastat, but that didn't work.  We called the on call doctor and he advised we give him a clonazapam and keep giving him as much as he needed but to watch for decreased breathing. 

After two clonazapams and another seizure we decided to call 911.  The paramedics came and checked his vitals - he was breathing well.  The paramedics talked with the on call doctor and then I talked with the doctor as well.  He said it basically came down to what we can handle.  He said that they could bring him in for an overnight observation period and give him some IV drugs, but there was very little they could do.

At this point I felt like the worst mom in the world.  I didn't know what to do.  But Leeon and I decided to wait.  It was almost time for his scheduled meds and we thought we'd just try to hold on a bit longer.

I'm glad we decided to wait.  We gave him his meds and he was seizure free for the rest of the day! 

He had another tonic clonic seizure this morning while asleep.  It was about 1 minute long.  It will be interesting to see what today will hold.

Right now, we are thanking God that:
~  He hasn't had any myo or drop seizures for 7 days which means we haven't had to wear the helmet!
~  God gave us wisdom in the moment to keep him home.
~  The few days we had of no seizures we got to see a big improvement in his speech as well as just in general.  This means that once we can get the seizures under control some of the things we've been worrying about will probably disappear.
~  We have so many people lifting us up in prayer.

We are praying that:
~  Ben will be completely healed.
~  Leeon and I will be strengthened physically, emotionally, and spiritually.
~  We will have wisdom to know what to do next.

Ben with some gifts from people praying for him. 
 Look!  No helmet!

Epilepsy

I'm starting a blog about epilepsy.

I never once imagined that those words would be true or necessary or that I would ever understand anything about epilepsy.

But I do.

I understand that over 45,000 children are diagnosed with epilepsy each year. 
I understand that for over 70% of people with epilepsy a cause will never be determined.
I understand that about 40% of people with epilepsy will have irretractable epilepsy meaning that the seizures are resistant to drugs.

My son, Ben has been diagnosed with Doose syndrome this summer. 
His seizures are generalized and there is no known cause. 
At this point, he has failed numerous drugs and is considered to be drug resistant.

I've started this blog for a few reasons:
~  I need a place to share updates about his health with our family and friends.
~  There is little information about Doose Syndrome as it is very rare.  I'm hoping to connect with other families.
~  My prayer is that God would use this as a place to offer courage, strength, and hope to others who are walking through a crisis - no matter what kind.

Thank you for joining me here.  Of course, we appreciate your prayers for Ben and the thousands of other families who are dealing with epilepsy.