One Day at a Time

Interesting morning.  

As we met with the dietician I kept thinking how different Chris's perspective is from mine.  In his mind, he's up every day ready to go to work by 11:00 and eats breakfast, lunch and dinner.  The reality I see is he can rarely get out of bed before at least noon, sometimes makes it to work by about 3:00 and doesn't eat at all until he's starving late in the day. 

Having a 22 year old young man who needs to comply with a special diet won't be easy, especially when he thinks he already is.  Getting nervous about this process, and hoping that once he reaches ketosis and feels better, he will also sleep better and will get on a more normal schedule.  Of course, as the mom, I'm nothing but a nag when I correct him and remind him of his real habits - the ones I actually witness.  Getting this one healthy so he can leave the nest will be a challenge.

Through tears, I told him I will FIGHT for him and do my best, but he needs to be realistic and also do his best to comply with this difficult diet.  It will be worth it, I tell myself.  It will all be worth it.

In the meantime, we will do the best we can.  This month is all about learning the ins and outs of the Modified Atkins Diet and what Chris can and cannot eat.  Now I'm grateful we are not trying to do the 4:1 ratio in the traditional ketogenic diet.  This is going to be hard enough.  Getting a 2:1 ratio of fats to protein involves an army of calculations on my part - and determination on his part to feed his brain properly.

I bought Ketostix and Chris peed on the stick for the first time today.  It looks like he's between 15 - 40 on the scale.  We've got a ways to go to reach ketosis.

I keep reminding myself: one day at a time.

The Ketogenic Diet: Is it just Our NEXT Best Last Hope, or a CURE?

I should be further along in researching the Ketogenic Diet by now.  I’ve had the book, Ketogenic Diets, for a month. I am slowly, so slowly making my way through the book, taking careful notes. Now I have a second book about the Atkins diet and a cookbook to pore over.

So, why do I drag my feet when something so important  - no, not just important - life altering, is at stake?  After much soul searching, I’m convinced it’s because something so important is at stake that I do this.

I’m convinced the Ketogenic Diet is our last best hope for Chris being at least close to seizure free.  It doesn’t matter that there have been several last best hopes so far:  medication changes (so far, nothing has given the relief we’d hoped for), video EEG in the hospital for a week (seizure focus wasn’t located), surgically implanted electrodes in his brain with another week of video EEG in the hospital (still nothing definitive - seizures propagate so fast it’s impossible to see where they begin - and then he had that brain bleed to recover from…), MRI with dye to show fluid flow to the brain (there is no blockage), Ictal SPECT (finally located general area  of seizure focus but it is inoperable).  And so it goes.

Of course, if the Keto Diet doesn’t work, there will be more last best hopes.  We still haven’t tried the VNS.

But THIS.  THIS is our last best hope for now.  It’s a non-invasive, natural remedy that has actually cured children and adults of their epilepsy.  Yes, I said it: cured.  They go off meds, and later off the diet and have no more seizures.

And I am afraid.

Afraid that what has happened with all the other last best hopes will happen again.  That my dream of Chris living a life free of seizures and the side effects from medication is just a pipe dream.  

But I will plow through and I will buy the right food and come up with recipes and find a way to help a 22 year old business owner live daily life while on a restrictive diet to control his seizures.  I will do it, because that’s what we warrior moms do.  Our desire for our kids to live a normal life into adulthood trumps the uncertainties.  The fear will still be there.  But fear is to be kicked in the teeth and pushed aside for the mission at hand.  We will do this diet and we will watch to see the results.  Waiting and hoping for the best outcome.

And if the results are not what our hopes and dreams had envisioned, we will try the next last best hope.  And the next. 

The Graduation that Wasn't

I felt a momentary twinge of sadness, regret even, when I noticed that the college graduations happening over the weekend were those of my son’s former classmates.  Four years already? Was my first thought – how could it have been four years since his high school graduation? And then, the sadness.  Sadness that we are not celebrating Chris’s college graduation.  Sadness that his plans were interrupted.  Sadness that life sometimes throws a curveball.

How could we have known that day Chris came home after his sophomore year that the sleep deprivation he suffered was caused by nighttime seizures? Or that by following the brain mapping road we assumed would lead to brain surgery and a cure ultimately left Chris in the same place as before but with two years lost?

And then, it was gone.  My brief flirt with self-pity and regret was replaced with gratitude.  I mean, really? I was mourning the loss of a diploma and a party.  What I have instead is a son who is being transformed by God and his circumstances into a young man of grace and sincerity during these years of uncertainty.

Although he struggles daily with side effects from his meds and we don’t really know if he is still experiencing seizures in the night hours, in many ways Chris is thriving.  His experience dealing with what can be a debilitating and sometimes fatal medical condition has left him with a renewed vision for his future.  Each day he accomplishes something that brings him closer to owning his own business; with entrepreneurial dreams he looks to the years ahead with hope and not dread.

What about you? Have you been haunted or filled with regret by what you see as lost days, weeks, months or even years?  God sent a big fish to interrupt Jonah’s life, then caused that fish to carry Jonah right to where God wanted him.  Your “fish” (situation) has been carrying you to the exact place you need to be when you are released from it.  You might say that epilepsy is Chris’s fish, the time spent inside it is shaping him to be the man he needs to be.  This time is not lost time, it’s grace time.

Just the other day Chris asked me if there’s a Bible verse that speaks to moving

forward and forgetting the past.  I gave him this:

“…Forgetting what is behind and straining toward what is ahead.  I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”  Philippians 3:13-14

Yes. I can learn a lot from this young man.

The Merry-Go-Round of Life

With much consideration, it was decided by the doctor that the big, bad seizure of August 1st was brought on by sleep deprivation.  The sleep deprivation was brought on by chronic pain.  The chronic pain was brought on by a severely herniated (ruptured, actually) L5/S1 disk in Chris's back.  The final blow to the herniation was no doubt delivered when Chris tumbled out of bed during his seizure.  And so it goes.  The merry-go-round of life.

When the pain grew too intense to bear and 8 months of alternative therapy, rest, etc. didn't help, Chris underwent back surgery.  The risk of another sleep-deprivation induced seizure was too great.  The pain was debilitating.  Chris chose his neurosurgeon, who implanted electrodes in his brain last October, to perform the surgery.

The surgery was successful.  Now, a week later, Chris is off pain meds and just trying to heal from it all.  As the doctor said, "As long as he doesn't do anything stupid, he should be great!"

Here's to our young adult sons not doing anything stupid.

~ epimom ~

Here We Go Again...

August 1, 2012

"Today started out in the worst possible way." That simple acknowledgement on my son's facebook page said it all.  And those who know him knew exactly what it meant.  Another seizure.

We here at home knew it meant more:  Life on hold again. No more driving. Blood tests. Doctor visits.

This seizure, only the 3rd tonic clonic (gran mal) in his lifetime, was by far the worst.  In fact, by the time I discovered him as I knocked on his door in the morning to say goodbye before leaving for work, he could have been well into multiple seizures.  It took him a good 3 days to fully recover and feel like himself again.

Why does his brain insist on messing with the best-laid plans?  Why can't it just stick to the "normal" nocturnal complex partials that don't hurt anybody?  How will I ever let my son move out again & trust he will take the necessary precautions to manage these crazy brainstorms?

I added a date to my memory bank that day.  I'm like most people, keeping lists inside my brain containing the dates of birthdays, anniversaries, milestones... and the big seizures:  October 9th, 2009, July 4th, 2011, August 1st, 2012.  The days life stood still, and then took a turn in another direction.

And a Little Dog Shall Lead Them...

June 19, 2012

Dear family and friends:

So many of you have so graciously asked me for info about what is going on with Chris and his brain mapping, that I thought I would share some recent developments.

First of all, there is not much to report on the brain mapping front, with regards to moving forward to surgery.  Two appointments to be admitted to the hospital have now come and gone, January 10th and May 31st, and both have been canceled because the radioactive isotope needed for the next test (SPECT or Single Photon Emission Computed Tomography) is unavailable and currently out of production.  There is FDA red tape involved, so that's another very long story.  Suffice it to say Chris can not move forward until he has this test, which we are told is 90%+ accurate for mapping seizure focus.  Since his seizures are coming from the frontal lobe, and they suspect very near his speech center, there will be no talk of resection surgery until they are absolutely sure the focus is in an operable location.  So, we wait.

In the meantime, Chris has been stable on his meds and hasn't had a seizure (that we know of - they are nocturnal, after all) for several months!  Dr. Sutherling is very happy about that!  The med side effects are just a daily fact of life, and one of the reasons Chris would one day like to have surgery and at least be on a lower dose.  For now, the doctor's instructions to Chris were to "get on with life." It could be several months before the isotope becomes available and he can be admitted for the next test.

In another development, Chris has been blessed with a gift that we could not have guessed would have had such a great impact.  A friend contacted me several weeks ago, saying God told her to give one of her Golden Retriever puppies to Chris "for his recovery and healing."  Wow!  I was speechless - and let me tell you, that sweet puppy has given Chris what we could not = a vision for his future.  I heard him tell more than one friend, "this dog is going to see me through the next 14 years of my life... he's going to be with me when I graduate from college and get married, and he'll play with my kids!" I still get choked up remembering his words.  The other day Chris said to me, "mom, this puppy is the BEST thing that's happened to me in a very long time!"  They truly are best buds, and Samson wants to go with Chris everywhere.  I am so grateful to this sweet friend for hearing God's voice and providing such an incredible blessing!

For now, Chris has survived the first big wave of layoffs at our local supermarket, and that job has truly been great for Chris.  He's been there more than 2 years now and really enjoys  his co-workers.  He has also recently started an internship with a startup company of college grads who are working very hard to build a promotion and marketing company, which is very exciting for Chris, and exactly the area he is very interested in.  He may even get paid one day!  In the meantime, he is learning so much, and as assistant to one of the partners - he is BUSY - which I'm grateful for.  

As far as the future, it's so hard to make plans when Chris could get called up at any time to spend a week in the hospital for the SPECT test.  His leave of absence at his university has ended, but going to classes full time would still be very difficult for him, given the side effects of his meds he is dealing with.  Perhaps a class or two at the community college will be in the plan for this fall.  

So, I'm happy to report that Chris is doing well right now.  This process has turned out to be a much longer journey than we ever thought it would be -- and filled with uncertainties and waiting.  We actually thought he would be in the recovery process after surgery right now.  But God has other plans, and since HE knows the big picture, we are trusting that God's timing for everything will be just right, and that someday we will see the reason for the delays.  

Your prayers, as always, are so appreciated.  Take care, all, and have a wonderful summer!

With love and appreciation,

~ me ~

'For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

Delays

January 9, 2012

I received a call from the doctor today canceling tomorrow's hospital admission date for Chris.  The radioactive isotope they ordered in November for this test is still in a national shortage, and the order did not come in as of this morning.  They will call us when it arrives, and Chris will probably be in the hospital the next day.  I'll keep you posted.

And so, we wait...

Blessings,

~ me ~