Saturday, December 31, 2011

So long 2011...

I have two blogs. 

I've kept a private blog about Ben for a few years now.  It's mostly a way for far away family to see him grow.  It's an easy way to share pictures and experiences.  I love it because I'm able to quickly jot down some of my most favorite memories.  Then I use blurb.com and turn the blog directly into a book.  I was working on the 2011 book a few weeks ago and I was editing a post that was written on January 12, 2011. 

This is what was written:

light at the end of the tunnel

We ventured to Cook's Children's Hospital today and visited with Ben's neurologist. Dr. Perry is very nice and easy to talk with and today he had wonderful news! 
It's been 1 year and 3 months since his last seizure. So if all continues to go well, we won't go back until October. And he said at that point we will develop a plan to get him off of his medication! This is wonderful news because we were told that we needed to get to 3 years without a seizure before we could start weaning, but it looks as if we can begin the process at the 2 year mark. I'm thrilled beyond words and so thankful for God's protection on Ben's life. I pray that he will continue to experience healing and truly be able to be 'trileptal' free by the end of 2011!



You just never know what the future is going to hold.  We are "trileptal free" (the first med he ever took), but this isn't how I imagined it. 

Last year on New Year's Eve, my friend, Angie and I made these blessing jars.  The idea behind it is to count your blessings for the entire year.  Each time you experience a blessing, you write it down and place it in the jar.  We get to open up the jar and read all of the blessings we received this New Year's Eve! 

Here's a picture of our blessing jar (bear in mind that I'm not the most craftiest of people):



I included the lyrics on the jar because I love that old song!  I remember singing it as a little girl in church - I can still see Pastor Stephens and Mr. Karjala up there leading us.  :)

Here are the lyrics:

When upon life billows, you are tempest-tossed,
When you are discouraged, thinking all is lost.
Count your many blessings, name them one by one.
And it will surprise you what the Lord has done.

Count your blessings, name them one by one
Count your blessings see what God has done.
Count your many blessings, name them one by one
Count your many blessings, see what God has done.

Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,
And you will keep singing as the days go by.

When you look at others with their land and gold,
Think that Christ has promised you His wealth untold.
Count your many blessings - wealth can never buy
Your reward in heaven; nor your home on high.

So, amid the conflict whether great or small,
Do not be discouraged; God is over all!
Count your many blessings; angels will attend,
Help and comfort give you to your journey's end.

In case you've never heard it before, here's the song:




I don't know what 2012 will hold...I don't even know what tomorrow will hold...but I know that God will help us through every day of 2012.  He is with us through our current struggle and is using it to create something beautiful.  We don't see it all yet, but I know it.  He has promised to finish working out all the things that he started. 

If you are looking for a great book to read on this subject, click here, I've really enjoyed reading it.


Happy New Year!

Friday, December 30, 2011

more meds

Ben had another 2 1/2 minute tonic clonic seizure during his nap, but at this very moment I've only noticed a few drops in the past hour or so.  That is an improvement.
We hit a spot a while ago where if he'd have a tonic clonic seizure first thing in the morning, then he wouldn't have any drops or myos for the rest of the day.  Maybe that tonic clonic during his nap got some of them out of him.  I'm sure that's not how it works.  There really is no rhyme or reason to any of it.

We got in touch with the doctor and his depakote level today was 78.5!  I guess that's kinda good and bad.  Good that his level is not dropping and increased from the time we left the hospital.  But bad because if the level is above 50, it should be working.  But at least we still have room to go up - it can be as high as 100.  We will increase the depakote and we are also going to add clonazapam back in.

So here's his current daily regimen:

Morning:
250mg depakote
3.75mg tranxene
125mg phosphate
10mg clobazam
.25mg clonazapam
1/2 centrum multivitamin tablet

Noon:
250mg depakote
10mg clobazam
.25mg clonazapam

Bedtime:
250mg depakote
3.75mg tranxene
125mg phosphate
20mg clobazam
.25mg clonazapam
1 calcium vitamin
2 Vitamin D drops

We finally had to break down and buy a pill scheduler box to keep it all straight. 

I'm concerned about the amount of meds we are having to use in order to get seizure control.  There are so many potential side effects from all of these meds.  It's too much for one little body.

But if we can get the seizures under control, then that is what we ultimately need to do. 

Thank you for praying!

We have seen pictures of people sporting their 'Team Ben' gear, watched an adorable video of my friends' daughter doing back flips for Ben, and had a special visitor with an advent gift for Ben.  He has loved all of it! 

Thank you for being such a source of encouragement.  We are hoping with the med changes, we can have a great day tomorrow!

Thursday, December 29, 2011

more of the same

Ben has had a lot of seizures today.

I think they are a combo of myoclonic and drop seizures although they are slow, not fast jerks.  They are happening about once every 2 or 3 minutes.

He's having a very hard time walking in a straight line. 

We gave him an extra dose of tranxene this afternoon because he was clustering so badly. 

Tonight he has had 2 tonic clonic (grand mal) seizures.  One lasted 2 minutes and the other 1 minute. 

I watched this video a long time ago - when we first got the diagnosis of Doose.  I'm going to post it here because alot of you have asked what the seizures look like.  It is difficult to watch.  I've never been able to capture Ben's seizures on video - mostly because when they are happening I can't think of anything else except to make them stop. 

I used to be able to relate to only the beginning - the tonic clonic seizure and the scene at the breakfast table.  But now we are seeing more of the rest of the video as well.  We are now seeing hundreds of seizures a day.

Here's the video:



The good news is that Lauren is doing well today.  She has been seizure free over a year.  You can read her blog here.  She has some lasting effects from the seizures.  She is attending a special needs kindergarten, BUT she is seizure free!

We have hope!  We just need to continue to persevere.

Wednesday, December 28, 2011

we are home

Ben has been seizing a lot.  About every 2 or 3 minutes, he is having some sort of seizure.  I think some of them are drops, some are myoclonic, some are just strange.  Everything is just slower.  Before the drops and myos were quick sudden movements.  Now they are almost in slow motion.  I think it's because of so many drugs.  I had to put his helmet back on when we got home because he is stumbling and falling over from seizures.  He fell completely backwards in the kitchen while I was trying to make his pizza.  His arms were up in the air and he just fell like a tree.

We have increased his bedtime dose of depakote.  We have started the first med of tranxene in place of clobazam. 

Please pray that this will work.  We are very overwhelmed right now.  Pray specifically that this increase of depakote will get him back on track.  Pray that eliminating 2 of the 3 doses of clonazapam will make the depakote stop dropping.  Pray that tranxene is effective at eliminating the seizures.
I just keep listening to this song to remind myself that He won't let go of us.  He's got this.  He's going to come through for us in His timing.  We have to hold on to the promise He gave us:
 "About Benjamin, He said, 'Let the beloved of the Lord rest secure in Him for He shields him all day long and the one the Lord loves rests on His shoulders.'" 




It's hard tonight...

Here's some tangible ways you can continue to support us...
~  send us your favorite scriptures, online sermons, music, anything that will continue to increase our faith (some of you have already been doing this and it's been so uplifting)
~ if you have a Team Ben bracelet or T-shirt, snap a picture - I'd love to show Ben how many people are cheering for him
~ pray.  pray for him and pray for your friends that are battling things silently.  We are amazed by the support we have received and I always think about the people who are hurting alone - without such support.  I don't know how they do it. 
You can email me at laurieanne1@sbcglobal.net.

Thank you so much.

we are going home!!! :)

Ben slept heavily last night.  He woke up this morning and ate breakfast!  :)  He sat up independently, was talking more, aware of his surroundings a bit more, etc.  We even took him to another part of the hospital to watch some drummers perform (he had his beloved drum sticks with him). 

We met with the doctor just a few minutes ago.  His depakote level dropped again, this time it's below the therapeutic level.  The doctor thinks that maybe the clonazapam is interacting with this med.  Its hard to understand because we've been on this combo before without difficulty.  But we are going to slowly trade clonazapam for transene.  We will also increase his bedtime dose of depakote.

He just had another 20 second tonic clonic seizure while he was sleeping (nocturnal).  :(

But we are going home!  We will give him his meds at 3:00 and then be discharged sometime after that.  It's always with mixed feelings that we leave the hospital.  We are always thrilled to go home, but in my mind I always hope that he'd be completely better.  I mean, we come to the hospital so they can fix him; make everything better.  But we are going home with the same issue, it's just a little more controlled.  We have to keep looking at the small victories.

Here's what some of those victories are:
1.  He ate breakfast and was willing to drink fluids.
2.  All of his seizures are milder in intensity, duration, and frequency.
3.  Those mysterious seizures may NOT be tonic afterall. (oh, I hope so!)  The doctor observed a milder one and he thought it looked more like a generalized type seizure, I'm not exactly sure what that means, but it's good!
4.  He has maintained ketosis since we started the diet.
5.  The nurses have been amazing for us. 
6.  Ben is able to rest without constant seizing.
7.  He is able to hold his body up while seated and can walk with assistance - he'll be back up and running in no time - we just need the high powered meds to clear his system and for him to get used to the increased depakote and adjust to the transene.
8.  We are going HOME!!!  Things always look better at home.  :)

Thank you for reading and for praying.  We keep hearing from and about people who are supporting us - some of them we don't even know.  Thank you for your love and concern.

Tuesday, December 27, 2011

I'm not sure where to begin...

Leeon and I have talked about how throughout our ordeal with Ben there are certain images that are forever burned in our memory....his first seizure...July 5th...a drop seizure in JoAnn's that threw him to the ground...a tonic clonic in the HEB parking lot...a tonic clonic in the bathtub...a tonic clonic at the park...and now our trip to the ER at Cook Childrens on Christmas Day...

The last time I blogged, it was Christmas Eve.  That evening turned out to be a rather difficult one for Ben.  He had multiple seizures during the night.  We kept talking about whether we should call 911, call the answering service, or just take him in ourselves to the hospital and each time we decided to just keep waiting to see if things would improve with diastat and extra clonazapam.

He woke up on Christmas Eve and we had a wonderful morning together.  He was a little lethargic and had a difficult time opening his presents, but he was thrilled with his new drum set! 

We had a quiet morning and got ready to go to church for the 1:00 service.  He fell asleep on my lap and had two tonic clonic seizures there at church.  Our church family is wonderful.  They prayed with us and encouraged us.  When we got home he cried for a very long time.  His body was just aching, but he finally got to sleep.  Later, we went to my mother-in-loves and spent time with family. 

As soon as we got home, he had a tonic clonic while awake.  This was the first awake seizure he had in over a month.  At this point we called the doctor.  These were our options:

~ try a new med...but the pharmacies were all closed
~ keep trying diastat and clonazapam....but we had been doing that for 6 days already
~ wait it out and talk to Dr. Perry...but they wouldn't be in until Tuesday
~ take him into the hospital to get him 'loaded'...

We decided to take him in.  I'm glad we did.

He had a tonic clonic in the car on the way there.

Leeon dropped me off at the ER entrance to park the car.
He had another one while I was seated - a paramedic picked him up and carried him back.

As soon as we reached the back, it seemed like there were 30 people in the room with us all frantically doing something while he lay seizing on the bed.

We answered a millon intake questions, breathed for a minute and the nurses went on their way getting the drugs ready and such. 

Then he seized again.  His oxygen level dropped very low and very fast and his head was tilted back in anticipation of intervention.  They placed an oxygen mask on him, the seizure stopped, but he couldn't stop crying.

They gave him fosphenytoin in an IV.  They wheeled us up to our room and he finally fell asleep.  In the haste to get him here, we forgot his clobazam.  This drug has finally been FDA approved, but it's not available here in the states yet.  So this meant that Leeon had to go home and get it.  He also picked up a few odds and ends and made a pepperoni/peanut meal for later.  Poor Leeon - it was after 3:00 am before he got back to the hospital.

Really from here it's almost a blur...seizures continue, valsporic acid level is too low so depakote is given in an IV, seizures continue, more depakote given, seizures continue, ativan is given, depakote level is still too low, more given, regular depakote dosage increased, etc.

The doctor thinks that a new seizure has emerged.  He's calling it a tonic seizure.  Ben's arms stiffen and pull upward as if he's shielding his face, he appears "out of it" - not unconscious like during a tonic clonic, but unable to respond.  They only last a few seconds.  This is what the beginning of his tonic-clonic seizures look like.  Dr. Perry told us once that tonic seizures usually look like the superman pose - arms extended straight and up in the air.  I'm a bit confused about whether these new episodes are indeed tonic seizures. 

At the very beginning of this journey, we were directed to the International League Against Epilepsy website.  According to this site, "Nocturnal generalized tonic-clonic seizures, which may develop later, are another unfavorable sign. If tonic seizures appear, prognosis is poor."  I told the doctor this and he said, "yes it is true that prognosis is poor but he was going to leave the conversation of prognosis to Dr. Perry, but it's good that I'm aware of the possible prognosis."

BUT!!!!  There are a few things I'm sure of:
1.  They may not be tonic seizures.
2.  If they are tonic seizures, it doesn't change his diagnosis or treatment.
3.  As someone told me - when you meet a child with Doose, you've met a child with Doose - that's how varied they are.  No two Doose kids are alike.
4.  I know that our God is greater than Doose.

So, we have to continue to focus on right now.  We can't let our minds go down the road too far ahead of us.  I have a magnet on my fridge that says, "don't fear the future - God is already there".  We need to deal with what is actually happening and not what might happen.

Right now we need Ben to eat and drink more.  We need him to continue to become more alert.  We need his depakote level to stabilize.  We need to go home...

We are so thankful for:
1.  the Guidrys!  Angie came to visit with us today and ended up driving all the way home with me to make some meals for Ben and then coming all the way back.  I love this family!
2.  Ben is trying to talk more.  He is sitting up better and has better control of his body.
3.  The seizures have been declining all day long. 
4.  He requested to go for a walk so we took him downstairs in the wheelchair for a minute.
5.  The care we have received from our nurses has been great - we've had some of the same nurses each time we've come so it feels more familiar.
6.  We have received so many messages of encouragement from our friends and family.


We are praying that:
1.  Ben will be healed.
2.  That his depakote level will stabilize.
3.  The doctors will continue to have wisdom.

We continue to have hope. 

Saturday, December 24, 2011

Christmas Eve

Ben had another rough night.  He had 7 seizures during the night.  Five of them happened in a four hour period.  We tried diastat (valium) - it gave us an hour and a half of uninterrupted sleep.  Then we tried clonazapam - and he had another seizure 10 minutes after that.

But this morning, he's doing good.  He is stumbling a lot, but he has a lot of drugs in his system.

He's actually trying to vaccuum the house.  :)

**********************************************************************************

It's Christmas Eve!

The tree is lit and there are even a few gifts under it already.

Leeon and I would give just about anything to wrap a gift of healing for Ben.

But as soon as I start thinking about Christmas and what it really means, my heart is filled with hope.

God has already given us the greatest gift - His Son.  His divine plan is to heal us from our greatest sickness - sin.  All we have to do is accept this gift! 

I feel compelled to share with you His message of hope

He longs to have a relationship with us - with you. 

I don't have it all figured out.  There are a lot of human emotions that get in the way of my relationship with God at times.  I have a lot of unanswered questions.  I don't know why Ben is sick or why we are on this roller coaster ride.  I don't know why everything we try seems to fail.

But I do know that His plan is greater than my own!  He has promised to work out everything for good.  He loves Ben with a perfect love - He has wonderful things in store for him.  We can't see the big picture, but He has it all planned out. 

"So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever." 
2 Corinthians 4:16-18

We are in a rough spot with Ben.  It does feel like things are falling apart on us at times.  But God is making new life and His grace is unfolding.  He takes the ashes - the parts that are leftover after you've walked through the fires of difficulty - and makes things beautiful again.  He's making beautiful things here in Ben's situation and creating a beautiful home for us in heaven. 

Oh, heaven.  I can't even begin to imagine it!  "...the lavish celebration prepared for us..."  

If you haven't accepted the offer of hope that comes through Jesus, I'd love to talk with you about it. 

If you are walking through your own fiery trial, know that you are not alone.

Hope.

It's God's gift to you this Christmas. 

Friday, December 23, 2011

decisions

Ben had 1 tonic clonic seizure immediately upon falling asleep last night.  We braced ourselves for a long night.

He slept for most of the night, but ended up having 6 seizures between 3:00am and 7:00 am.  At one point, they were happening every 30 min.  We gave him a clonazapam and that gave us 1 hour before the next one.  Clonazapam is easy to administer because it disolves in his mouth.  At 7:00, after the last seizure we really wanted him to take his other meds as well.  But it's so hard because he's postictal.  We couldn't get him to swallow the depakote.  I know we shouldn't try to make him take the meds in that state.  But we didn't know what else to do to try to make them stop. 

It's the helplessness that's unbearable.  The not knowing and second guessing - and it's always when we are exhausted and in the middle of the night.

He's awake now.  But as to be expected, his speech is completely slurred and his balance is really off.  After seeing such a great improvement when the seizures stopped, i know that in time his balance and speech will improve again as well.  But it doesn't make it any easier to see him like this now.

We talked with the doctor again yesterday and he told us that if increasing the clobazam doesn't work, then we have 2 options. 

The first is to try another medication.  I talked with a few moms on the support group and it seems that felbatol has helped some of the kids.  I'm a little confused because as I understand it once you fail 2 drugs, you fail them all.  One mom told me that there is less than a 12% chance that another med will work.  But felbatol has helped control seizures in some of the other Doose kids - even when other drugs have failed.  I don't think any of those kids are seizure free yet, but there has been a reduction.  He mentioned two other drugs, but one of them the moms said either made things worse for their child or didn't help at all.  The other one, no one has said anything about.

The other option is the Vagus Nerve Stimulator (VNS) implant.  Apparantely a wire is twisted around the vagus nerve and a device (like a pacemaker) is implanted in his chest.  It would send impulses throughout the day to help stop the seizures from starting.  Then if he were to have a seizure, we would have a magnet to swipe on his chest to help stop the seizure.  This has as much as a 50% chance of working, but it can take up to 18 months before you really start to see the effects.  We've talked about this a few times with the doctor, but I've never really pressed with the conversation because I never thought we'd actually have to seriously consider it.

Yesterday, I wrote that I am choosing joy.  I was doing great until this conversation with the doctor.  Trying a new med feels a little like we are grasping at straws; guessing; wasting our time, etc.  But the implant feels so overwhelming.

It's just hard to know what to do.  The doctor told us to start researching and we will probably talk again after Christmas. 

We are still choosing joy.  We are still trusting in Him.  We are still so thankful for:
~ the 13 seizure free days we had - they give us hope for the future
~ Ben brings such happiness to our family
~ family and friends support
~ the myoclonic and drop seizures have not returned

We are praying for healing and for wisdom.  We really don't know what to do.  Please pray for us.

Thursday, December 22, 2011

today I choose joy

Ben had 3 more nocturnal tonic clonic seizures starting at 2:30 this morning. 

Yesterday we were playing around and I was pretending to be upset about something he did - we were joking.  He looked at me and said playfully, "Calm down mom, there's nothing to worry about."  He must have said it at least 20 times - over and over again.  I finally looked at Leeon and asked, "Do you think he's trying to tell me something?"

I have to be honest - my heart is afraid.  This road is too familiar.  But there's this little glimmer of hope that maybe this time it'll be different.  But even if it's not...we are not walking alone.

So....

Wednesday, December 21, 2011

the new plan

Everyone agrees that this is not a diet issue because he has maintained ketosis. 

Our new plan is to increase clobazam by another 1/2 tablet at bedtime for one week gradually increasing to a whole tablet at bedtime.  So he would be getting 10 mg in am, 10 at noon, and 20 at bedtime.  If this doesn't work, then further increases of this med will most likely not work either.  The nurse told us that if this doesn't work, we'd have to go to the next step.  But we aren't sure what that step is at this point.  We will take things one step at a time.

We are praying that this will work and that we won't see any more seizures.  Historically, once the tonic clonic ones return it's only a matter of time until the drops and myoclonic jerks return as well.  Hopefully the increase in clobazam will stop that.

I told the dietitian today that it's so frustrating because it seems that we are just guessing - just grasping at straws to figure it out. 

But he's had such a great day!  We are so thankful for his optimism and good demeanor.  He is a blessing from God.

a rough night, but good morning

Ben had 4 tonic clonic seizures between the hours of 1:00 am and 7:00 am.  After the 2nd one, we gave him another clonazapam and that gave us a 4 hour stretch of seizure relief.  He turned blue for each seizure.  I hate that.  Leeon and I are both rubbing on his back asking him to just breathe...it feels like an eternity before he gets that breath in.

I've called the doctor.  It appears to me that we are just discovering that clonazapam was probably giving us a little honeymoon period.  I've asked if we could increase his depakote since the last time we checked his levels, there was room to go up.  His diet has been the same - he's not cheated or anything.  We haven't even increased his calories like we talked about.  He is still in ketosis - his ketones are 160+.  It's so hard to figure it all out.

We took him this morning to get a lot of bloodwork done to make sure everything is going ok with the diet - checking his lipids and other things.  This was prescribed at the appointment - not related to the increased seizure activity.

He's doing great now though!  You'd never know we had the kind of night we had.

I'm hoping that the doctor will call back soon.  We are quickly approaching the weekend and Christmas.  I asked him for a plan because I don't want to just rely on information from the on call doctor since they don't know his case very well.

Thank you for praying for our little guy.

Tuesday, December 20, 2011

we are not out of the woods for sure...

Ben just had a 2 1/2 minute tonic clonic seizure while asleep this morning.

He hasn't had a tonic clonic since November 29th. 

I don't think I will ever get used to the sight of him seizing and his lips and hands turning blue...it's just so scary.

So, this means the clock starts over. 

It also means we have to figure out if something went wrong.  His ketones were large last night when he went to bed.  He ate normally.  He missed his nap, but had slept a lot in the car yesterday on our travels to Ft. Worth.  He was up a little late last night, but nothing extraordinary.  He took all of his meds as usual. 

The book talks about being a sleuth and figuring out why they had another seizure.  They said to go and check the toothpaste to see if they may have eaten it.  I just don't see how he got any food yesterday that he wasn't suppossed to.  They say also -

he just had another seizure...

4Rejoice in the Lord always. I will say it again: Rejoice! 5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-7

We just need to keep bringing him to Jesus...

Monday, December 19, 2011

neuro appointment

We met with Dr. Perry this morning.  Ben was so proud to get to tell him, "No more seizures!".  He and the dietitian commented on how much better he looks!  We all agreed that being seizure free is a wonderful Christmas present.  :)


He told us that some of the genetic testing that was done in the hospital has come back negative!!!!  This means that he does not have the genetic mutation found in similar epilepsy syndromes.  We are so very thankful for this news.  It has been in the back of our minds since our November stay and we are thrilled that it's negative.  The doctor did warn us that it's still possible for him to have one of these other syndromes, but it's in his favor if the testing comes back negative.  So, yeah! 



I asked him about clonazapam and we all agreed to leave things as they are for a bit.  We will start weaning that drug in a few months.  Then as time goes on, we can continue to wean other drugs.  The goal is that the diet will take the place of the drugs.  It will probably take us the whole 2 years to wean him off all of his drugs. 

If he continued to have seizure freedom during the weans, then our goal would be to get a normal EEG.  If When that happens, we can then start to wean him off the diet.  The doctor mentioned something about having a 50/50 chance of continued cessation of seizures at that point. 

I was a little shocked and said, "You mean we aren't out of the woods yet?" 
He smiled and said, "No, not even close - you are in a happy place...a less dark part of the woods."

He explained again that Doose is a difficult beast.  Of all his patients, he has about 6 or 7 that have Doose and Ben is the only one who did not respond to meds.  He said that he is on the more 'difficult to treat' end of the spectrum, but he is hopeful because we are in such a good place right now.  He said that honestly when an epileptologist tells you that you have a 50/50 chance it means they have no idea.  He said that there is a huge need for more research in this area because he feels that it's probably 2 different syndromes.  He said for half to get better and the other half not to...there's just not enough research to know why.

We also met with the dietitian and she mostly just encouraged us to keep going.  She's going to try to find some more portable meals.  (We all had a picnic lunch in the car today - pepperoni and peanuts).  We are also going to try to increase his dinner by 50 calories.  It won't increase the amount of food very much at all - especially to keep it within ratio, but we are hoping it'll help. 

We decided to celebrate 13 days of no seizures with a little trip to Chuck E. Cheese. 


So where does this leave us?

We are in a waiting game.  Everything with epilepsy takes time.  The doctor told us that this is the hardest part.  Waiting to see if things are going to continue to work or if they will fail. 

In the words of Dr. Guynes (the beloved former SAGU President),  we have to "hold steady". 

We have to keep on making the diet work and not become 'weary in well doing'.
We have to keep trusting that all of this is in God's hand. 
We have to celebrate today and not be in fear of tomorrow. 
We have to keep believing that whatever side of the 50/50 he lands on, God will continue to be with us every step of the way. 
We have to take things one day at a time.

We go back to see Dr. Perry and our dietitian on April 2nd.  We will probably start the clonazapam wean at that point.  Until then, we will pray for continued seizure control, for good growth on Ben's part, and for His peace and wisdom.

Thank you for praying with us!

Saturday, December 17, 2011

Pancakes...keto style

Saturday mornings have become cooking time for me.  Today I made 4 days worth of pancakes and 4 pizzas.  It took about 2 hours - I'm getting so much faster! 

Here's a look at the pancakes that he LOVES...

As the Pioneer Woman would say, here are the cast of characters:

7 grams of canola oil
28 grams of egg mixed well (less than 1 large egg)
30 grams of macadamia nuts ground into butter
4-5 drops of Bickford maple flavoring

Add 7 grams of softened European butter with a sprinkle of cinnamon

Mix ingredients together.

Pour onto pan - I've been using Christmas cookie cutters to make it a little bit more interesting.


They are so fluffy and thick when they are in the pan, but as soon as they cool - they completely flatten out.  I'm not really sure why.  Freezing them saves so much time in the morning.  I only have to weigh out the butter and cinnamon and add a little fruit. 

He loves this meal.  I think because it's such a big amount of food.  He doesn't have to eat extra oil, butter, or cream either.  It feels a bit more normal than some of the other meals he has eaten like the hotdog meal he had the other night.  Here's a look at that one:

We tried this one in the hospital, but I mixed the butter in with the peanut butter and he hated it.  This time I added the butter in with the hotdog and he liked it a little better.  But there was quite a lot of butter left over in the bowl that he had to drink. 

But he is drinking the cream now!  We still have to add a little diet, caffeine free soda to it, but he drinks it without complaint.  This is an answer to prayer for sure! 

Tonight he asked for a hamburger.  I was shocked at first because he's never had a hamburger before - even before the diet.  It just wasn't something that we ate frequently.  But I played around on the keto calculator and decided to give it a try. 

He had a patty about the size of a chicken nugget (maybe a little bit bigger) with a lot of oil mixed in.  He had 1 1/2 grapes along with it.  The majority of the calories for this meal came from the cream.  He had to drink 79 grams of cream - that's double what he's used to.  But again - he did it without complaint.  We are so thankful that he's adjusting and we know it is because of God's grace.

My goal for this Christmas break is to find more meals that are complete - like the pancakes and the pizza.  Things that don't require drinking oil and butter.  I also need to find some recipes that are portable.  We'd love to be able to spend the day away from home, but we can't go very far because we have to be back by the next meal.  We can't eat out anymore.  He tolerates the pepperoni with oil, peanuts, and cream meal.  With some planning that is probably the most portable option so far. 

I still can't get over how far we've all come in the past month.  Ben has made HUGE physical gains, but we have all learned so much about how to prepare his meals.  I still have a meltdown here and there with it all, but when I think back to the first night at home - wow!  We've come along way!

And while I've been cooking every Saturday morning, Leeon has been taking Ben to Lowes to build a train!  Thank you Lowes for something fun and free!  He built one car each Saturday and he's so proud of his work!


Thursday, December 15, 2011

one month in...

We made it through our first month on the ketogenic diet.  I honestly didn't think we were going to make it there for a while.  But what a difference a month makes!  He looks better, sounds better and is still seizure FREE! 

He makes it all worth it...

video

Wednesday, December 14, 2011

a great group of supporters

Here's a picture of some of the Team Ben supporters.  There are many more out there - but I am privileged to work alongside these great educators everyday!  It was encouraging to see so much blue!  It strengthens our resolve to keep at this diet, even when it's hard.  I know that there are many praying and loving on us without a t-shirt too.  We just can't thank everyone enough for their outpouring of love.  :)

Go Team Ben!

Tuesday, December 13, 2011

still going strong

Ben is STILL doing good - in fact, he's doing great!  We are seeing more and more of the real Ben everyday.  We just couldn't be happier!

Meal times are still touchy.  He loves breakfast - the macademia nut pancakes are a huge hit.  He also still enjoys the KetoCal pizza.  But dinner is another story.  He'll get excited about his dinner choice, but then when it's time to sit down to eat it he cries.  It's like it overwhelms him.  He eventually eats it, but it's a challenge. 

It's funny how food has taken on a new role in our home.  It used to be that if we had a great day, there was food to celebrate.  If we had a rough day, then we'd order pizza or what not.  Even holidays were filled with sweet treats and goodies.  But now, food is for nourishment.  We try to eat with Ben, but it's still hard.  He wants what we are eating - even if it's something he doesn't like.  His portions are so small that he is almost always done before us and then is upset that he can't have more.  We are learning new ways to eat just as much as he is and learning new ways to celebrate - without food.  :)

We have to test the level of ketones in his urine each day.  (I have a cute little story to share, but I hope it doesn't sound too crude - just bear with me.)  The most accurate way to test his urine is to collect a sample in a small cup.  Then we insert the test strip into the cup and compare the color to determine the level of his ketones.  Ben has wanted to become involved in the process, so we have included him a bit.  Tonight I asked him to use the restroom in the cup and told him that I'd be in there in a minute to help him out.  A minute or two later Leeon asked him if he had dumped it already back into the toilet and he said yes.  I reminded him that he was suppossed to wait for me and he said, "I already measured it!"  We were both shocked, but he did!  The test strip was already discarded as well.  We just thought it was cute how he said it and that he did it by himself! I guess some things are becoming second nature for him too.

Tonight we are thanking God that:
  • he has been seizure free for 7 days now!  woo hoo!!!!!!
  • his sense of humor is returning
  • he seems to have more energy
We are praying that:
  • dinner will go better
  • I will be able to experiment over the Christmas break to find things he'll like
  • his doctor appointment on Monday will give us more insight
  • we will be strengthened

Friday, December 9, 2011

I think it's starting to hit me...

Day 3.  I think it's starting to hit me that this is actually working.  I keep hearing that there isn't a 'honeymoon' phase on the diet like there is on the medications, but my heart is still cautious to believe.  But we have been noticing a change and others have too!  Ben is coming back.  He is being healed.  We are privileged to get to see the hand of God moving in his little life.

This picture captures some of the differences:
On December 1, we started one of Christmas traditions - to unwrap one of our Christmas books each night before bed as a countdown to the special day.  Notice that his head is tilted back - he was having a hard time holding it at a regular angle.  His eyes are droopy.  His smile is very forced.  His left hand was curled up like this often.

But look at him tonight!  I have tears in my eyes because my heart is starting to actually believe that it is working!  He wants to play - not lay around and watch TV.  He has energy.  His sense of humor is returning - at times to our chagrin.  But at this point, we welcome it.  :)

We took him to the pediatrician today and he has bronchitis.  After a call to the dietitian and some mathematical calculations regarding the number of carbs in the medicine, he can take his antibiotic (the adult version) without having to adjust his diet.  The good news is that he hasn't run a fever so hopefully we can continue to get through this little patch of illness seizure free.

I just listened to Ben play this song on his drums - wow!  "If God is for us - who can be against us?"

Thursday, December 8, 2011

Day 2

Another seizure FREE day!  :)  :)  :)  :)  :)  We are thrilled!

He asked for pizza for dinner tonight.  I told him that he already had his pizza today at Nana's and he said, "No, not that kind - the kind that the man brings to the door and drops it off."  We told him we couldn't have that kind of pizza anymore and he said ok and moved on. 

He chose pepperoni, peanuts, and whipping cream instead. 

I love him.

Wednesday, December 7, 2011

a GREAT day

Ben had a great day today!  No seizure activity!  :)


He had one myoclonic jerk yesterday, so we will count today as Day 1 on the seizure free count.

I asked him today, "Did you shake at Nana's house today?"  He answered, "No, not even once!"
Our appointment with Dr. Perry has been changed so we can meet with the dietitian as well.  We are looking forward to getting to report good news to the doctor in person.  The last time we were in his office, Ben had a few seizures right there!  I've had daily conversations with his nurse for so long, she is rejoicing right along with us that I'm not having to call everyday! 

We are also praising God that Ben hasn't had droopy eyes or a haze about him for the past few days.  It seems that he is coming back to us in a way.  He hasn't had to wear pull ups either for the past few days.  It really is amazing what a difference no seizures make. 

It's so good to see him doing so well and improving each day.  Please continue to pray that this is just the beginning.  Also pray that he will continue to adjust to the diet and not be so hungry.

Our hearts are overflowing with joy and hope!  :)

Monday, December 5, 2011

Hope.

"May the God of hope
 fill you with all joy and peace as you trust in Him,
 so that you may overflow with hope
 by the power of the Holy Spirit."  Romans 15:13

My brother, Brian texted this scripture to me back in August and it has resonated with me throughout this journey. 

Hope is a powerful thing.
It helps you to persevere when times are troubling and the doctors can't give you many answers.
It allows your mind to be filled with joy and peace rather than drown in the fear of the unknown.
Sometimes it is given supernaturally as you choose to trust in Him.

There have been many moments when I have completely fallen apart (just ask my parents or Angie).  But at some of those worst moments, "the God of Hope", well He was right there offering joy and peace.

 It is with great joy that we announce that Ben has had his first seizure free day while on this diet!He has not had ANY noticeable seizure activity today!  Not even shaky hands!  We are overjoyed!  We are hopeful that this is just the beginning of greater things to come for him. 

We are also filled with such joy at the turn out at Chick-fil-A tonight.  Our hearts are overflowing with gratitude.  We sat in the car for a few minutes just overwhelmed by the number of cars in the parking lot and in the drive thru lane.  I'm sitting here now thinking of all the people I got to hug and visit - all from different aspects of my life.  This is a rare opportunity to have so many of your loved ones in one building and I'm so thankful!  I know we didn't get to see everyone and I wish I could have just stayed there all day just talking with each of you. 

Many of you asked for Ben and we still felt it was too early to take him to one of his most favorite restauants.  We told him how much he is loved and he just smiled.  This journey is far from over for him.  This diet is labor intensive and at times inconvenient for us, but it's hard for him and on him.  He has a long road ahead of him.  We are praying continually that he won't experience the long term effects that so many of these Doose kids have to live with.  But we are also filled with hope as we look towards the future.  He has made great progress in the past few days!

I have to take a minute to encourage you.  I know that today some of you came to show your support for us, but you are in the midst of your own crisis.  I don't know what you are going through, but I want to offer you HOPE tonight.  God loves you so very much and He desires to carry you through the storm.  It doesn't mean that your storm will end, but you will be given the grace to sustain it.  Be encouraged tonight that there is hope.  My prayer for you is that

the God of hope
 will fill you with joy and peace
 as you trust in Him,
 so that you may
 overflow with hope.

Sunday, December 4, 2011

5 days!

Our hearts are rejoicing tonight!  Ben made it 5 days without a tonic clonic seizure!  Yippee!!!!  There are moments when my heart is scared to rejoice, but I just can't help it! 

We only saw a couple of "little ones" today.  Could it be that tomorrow will be his first seizure free day?  Oh, we surely hope so!

He's developing a little cough.  Epilepsy and illness don't go well together, so we are praying that this cough is just an allergy and not an indication of infection. 

Please pray that he will sleep all night long, stay healthy, and that we will all have a good first day back in our routines tomorrow. 

Thank you!

Saturday, December 3, 2011

4 days

It has been 4 days since Ben had his last tonic clonic seizure.  Yipee!!! :)

We've had 4 day stretches before.  When my parents were here visiting in October, we reached a good dosage of clobazam and had 4 days of no seizure activity at all!

We had another 4 days of freedom from seizure activity when we first returned from the hospital after starting the keto diet.  (3 days while in the hospital and 1 day at home).

So we are really hoping that we can make it 5 days of no tonic clonic activity! That would be wonderful!

We have seen a big improvement with the myoclonic and drops as well.  He's had about 5 or 6 moments today - sometimes it's a noticeable jerk, others it's the shaky hands, mouth, and eyes.  But this is a big improvement from even just a few days ago.  :)

We have added back clonazapam (he takes it 3 times a day).  We took him off of this when he started clobazam (from Canada).  So it'll be interesting to see how this all works out.  Our history with this drug is that he seems to build a tolerance for it and it stops working.  We've used this drug a lot actually in the past as a "rescue" med of sorts to stop clusters.  I think if we can keep having good results then we will know that it's the diet that's working and not just a 'honeymoon' from the clonazapam.

We go back to the doctor on the 14th so we'll have to see what the doctor recommends.  We are hoping that we can wean.  This drug seems to give him trouble staying asleep at night.  I can tell we are really getting close to having a seizure free day.  I can't wait!

Leeon and I got to go on a little Santa shopping trip/date this afternoon.  This was the first time we have enjoyed a meal together since before November 14th.  It was great to be able to look at each other and conversate instead of focusing on whether Ben has eaten every crumb and if he scraped enough of the butter off the plate or not.  When we eat as a family, we tend to eat quickly because Ben's portion is so small, he gets upset that he can't more if we are still eating.

The other day I was eating some string beans and Ben saw them.  He HATES these.  Before the diet, we'd have the old "you are going to try some before you get up from the table" standoff.  But on this particular day, he said, "Ok I'm gonna try one of those things.  I promise with my whole heart that I'm gonna like it.  Can I have one?"  Augh!  I had to say no.  :(

But we are so thankful...we have come so far in just one week.  Last week I was scared of the future and unsure how we were going to make it through.  But tonight, we are weary and cautiously optimistic, but at the same time rejoicing about the good that is happening right now.

Leeon and I were talking about how blessed we are to have such wonderful friends and family members.  They have organized a t-shirt sale, bracelet sale, and a night at the local Chick-fil-A.  Wow!  We don't even know how to respond to such an outpouring of love except to say, "Thank you!".  I know there has been a lot of work that has gone into this effort and we are very appreciative.  The funds that have been raised are being used to help pay for Ben's medical care and it's making a big difference.  Wow - I just can't get over it. 

We received another blessing today from Ben's old school.  Last year he was enrolled 2 days a week at First Christian Day School.  We loved our experience there.  His teacher, Mrs. Andrea was amazing and he blossomed so much while in her class.  He was even singing a song about the planets and couting to 100 by 10's.  We loved the early morning care he recieved from Mrs. Terri.  She was always so pleasant and welcoming to the kids early in the morning.  We had enrolled him again for this year and kept hoping all summer long that he'd be well enough to attend.  It soon became apparant that he wouldn't be able to attend at all.  They gladly refunded our tuition payment as well as our school supply fee and told us that they would be praying for him.  Today we received a very nice letter from them telling us that they have been praying for him and they enclosed a refund check for our enrollment fee (the non-refundable one) we paid last spring.  They said that they are hoping he'll be able to enroll soon.  What an amazing organization! 

These are just two examples of the love and support that have been shown to us these past few months.  We really feel that these acts, along with the cards and prayer support, are just God's hand of grace and mercy being extended to us.  So, thank you.  Whatever your role has been in being used by God to encourage us - please know that we are deeply touched by your generosity and support.

Thursday, December 1, 2011

A great day!

No tonic clonic seizures again today!  :)

We still saw the shaking, but it was less than yesterday.  As he grew more tired, it definately increased.

But we got to play outside this afternoon - the neighbor kids came by and they played kickball.  It is so sweet to see the bigger kids play with Ben.  He had a noticeable moment when he was seizing for about 20 seconds while standing.  (It's interesting how these seem milder but longer than the myoclonic jerks and drops.)  I held his hand to help him retain his balance until it passed.  The kids were all so sweet asking if he was ok.   Once it was over they just kept on with the game.  They just cheer him on as he tries to keep up with the big kids. 

We are thanking God that:
  • Ben hasn't had a tonic clonic seizure since Tuesday.  :)  :) 
  • We live in a neighborhood with great kids!
  • The flavors finally arrived so tomorrow he gets to try a 'pancake'.
  • I was able to cook and freeze a lot today.
We are still praying that:
  • Ben will be seizure free so we can start the 2 year clock.
  • His tummy will start to feel full - he is still crying a lot during the day about being hungry.
  • God will continue to give us wisdom and guidance as we try to help our little guy.