Here we are.

By the end of the week, my family will be coming off of the adrenaline that is created when my daughter enters another health emergency.  On Wednesday, she will be having another surgery to remove the kidney stone and the stint that was put in her last week.  By Thursday she'll be in recovery mode, and by Monday she will be normal again.  We'll all breathe a giant sigh of relief, and we'll carry on from here.  Well-meaning people will say things like, "Wow!!  I'm sorry she went through all of that!!  Hopefully that will be the last time anything like that happens."  I will respond back with something like, "I hope so, " and we'll move on because, let's face it, they won't want to hear the truth that we'll face something like this again, or possibly worse.  That's just how epilepsy rolls. 

We will have periods of peace where she will be in good health.  The meds will be working, and she'll have seizure control.  School will go on like always, and she'll make progress.  And we will love all of those moments.  We'll hold them dear to us, and treasure them always.  Don't ever think we take those moments for granted because they are a gift to us.

But let's face reality, shall we?  We'll face another health crisis.  It may or may not be worse than this one, and it will have our family realing.  We'll wonder why she has to go through so much, and when enough is enough.  And through those moments of peace, she'll get sick with a cold or strep, and it will be a huge deal because we won't know if a seizure is coming along for the ride.  It's never JUST a cold or JUST a strep infection.  It's a cold/strep with the possibility of a seizure.

And what if a seizure does happen?  We have to look and see what the trigger was.  Was she sick?  That's easily explained, and we'll probably do a slight medicine adjustment.  What if there wasn't anything obvious?  That's a bigger medicine change and an EEG.  What if the medicine doesn't work?  Well, that's a bigger issue altogether.

I hold so much hope.  I'm probably one of the most optimistic people you'll ever meet, but I'm also a realist when it comes to this.  I appreciate the hope that she'll grow out of this someday because I hope the same thing.  I pray for it daily.  I also know that the likelihood of that happening is low.  She responds relatively well to treatment, but if for some reason her medicine levels get low, she has a seizure.  She'll probably be medicated for epilepsy for the rest of her life.

I know why most people will hope that this doesn't happen again, and why they so desperately need to hear that she'll probably grow out of this.  I get it.  It is hard to comprehend that she will carry this with her for the rest of her life, and this little event won't be the last time that we get on a first name basis with the doctors at Scott & White.  It wears on your soul if you think about it too much.  It's easier to think that she'll get better from this, and be completely healthy in her adult life.  Please believe that I want that more than anything else on this planet. 

I want you to understand what it means to have epilepsy.  It's not just the seizures and the medications to control them.  It's the side effects of those medications.  It's the weakened immune systems because of the medications.  It's the brain damage from the seizures.  It's the three-inch thick binder that's full of your child's medical history.  It's the thirty-seven minute seizures that lead to days in the ICU.  It's the ambulance rides.  It's the helicopter rides.  It's the fear of the common cold and what it will bring to your child.  It's the list of doctors your child has to see just to maintain status quo.  It's the fights with the schools.  It's the closed minds of people in public when your child is having a meltdown that may or may not be related to seizures or the medication.  It's the hundreds of dollars spent monthly on medications.  It's the hours of research you do to understand what your child is going through.  It's the late nights when you're holding your child because she is in so much pain from who-knows-what.  It's fighting tears when all you want to do is cry because you have to be strong for your child.  It's the quiet moments you steal in the shower so that you can cry by yourself.  It's the fifteen doctors on speed dial versus the four or five regular life people.  It's the checking on your child compulsively in the middle of the night because you're afraid of nocturnal seizures.  It's the night terrors where you're chasing your child down the hallway in your house because she is heading out the front door.  It's the ER visits that last fifteen hours long.  It's knowing more about your child's conditions than most specialists around.  It's fighting to be taken seriously by those specialists. 

It's the moments of peace and happiness that you treasure and look back on when things are crappy.  It's the handful of people that really "get it."  It's hope.  It's understanding.  It's awareness.  It's being thankful because even though things really suck, it's not cancer or something else as equally as terrible and frightening.  It's finding the strength you didn't know you had to carry on for your familly.  It's the reflecting on your experiences, and what the future means, and knowing that the beginning of this little journey is a lot closer than the end.

Okay, so....

Gosh...I don't even know where to start. 

On Monday night, I had to take my daughter to the hospital due to extreme stomach pain and vomiting.  I honestly thought she had a virus, but with her and the fact that she has epilepsy, you really can't be too careful.  I'll spare you the details of the next thirteen hours, but the diagnosis after all of that was a kidney stone in her right kidney.  Approximately 5 mm in diameter, and it had lodged itself in the opening to the tube that drains her kidney into her bladder.  Consequently, her kidney was filling up with fluid and leaking into her body, causing her body to become sick. 

A stone similar to the one my daughter has.

She had a stint put in yesterday to help drain her kidney, and some time in the next couple of weeks, she'll be having another surgery to remove the stone, and take out the stint. 

Why am I putting this in an epilepsy blog?   EXCELLENT QUESTION!!


Up until Monday night, my daughter had been on Zonegran.  One of the rare side effects is kidney stones.  (I won't mention that in the last few months, my daughter has experienced several bathroom accidents, and every time I took her to the doctor and said I really thought she had a kidney stone, I was told I was wrong.) 

First and foremost, this is an argument for being informed and educated about the side effects of all medications.  ALWAYS, ALWAYS, ALWAYS BE AWARE!! Second of all, this is an argument for being more assertive with doctors about the fact that sometimes the parent really does know best, and I'm not some freak with a need for attention.  I could have ended this months ago if I had put my foot down, and let the doctors know I was not going to be dismissed.

Finally, this is a chance for me to explain that this is just as much related to her diagnosis of epilepsy as her seizures are.  The fact of the matter is that if she didn't have epilepsy, she wouldn't have had a kidney stone.  To treat them as separate medical issues that aren't related would be wrong.

She's being placed on Tegretol.  The pediatric attending at the hospital told me it was a sister drug to Trileptal, which scared the bejeezus out of me.  She'd been on Trileptal before, and it was a horrible experience for us.  Her seizures increased from a few every six to eight weeks to a few a day nearly every day of the week, and I feel that Trileptal is to blame partially for that.  It also could have been the natural progression of her condition, too.

The last thirty-six hours have been wearing.  We're all exhausted, even though my daughter is doing so much better.  We're also all scared of what this medication change could mean for us.  Will it bring back uncontrolled seizures?  If it does, will she start losing development again?  We've made so much progress the last few years, and the thought of losing it all again scares me senseless.

Treatments for Epilepsy

Good morning!! 

As I've mentioned before, there is no cure for epilepsy, but you can treat the seizures in the hope that they become controlled.  I'm going to provide a bunch of links to research and information about different treatment options.  I had planned on doing a blog posting about meds, the Ketogenic Diet, and surgery, but why re-invent the wheel?  ;-)

• Medications- This is the first step towards achieving seizure control.  In a perfect world, the first medicine would work, and you'd never experience another seizure ever again.  Unfortunately, this isn't the case.  In most situations, seizures will continue to occur until therepeutic levels are reached for the medicine.  The best way to measure this is blood work.  The doctor will order it, and it will measure how much of the medicine is in your blood after being metabolized.  Once it reaches a certain level, the doctor will not increase the medicine unless another seizure occurs.  As with all medications, if you take too much, it can hurt your body.  Additionally, you have to consider the possibility that the first medication won't be successful in controlling seizures.  If it isn't, you may discontinue use of that medication, and then start a new one, OR you may be prescribed an additonal medication.  Eight out of ten people achieve seizure control when on two or more medications.  My daughter is on three medications to control her seizures: Zonegran, Banzel, and Klonopin.  She's only experienced two seizures this year, so I consider her seizures to be controlled for now. 

• Ketogenic Diet- I kind of think of the Ketogenic Diet as the Atkins Diet for epilepsy.  It's very low in carbs, and very high in fats and proteins.  In all the research that I've done on it, I've never found a doctor that can explains why this diet works.  I have seen that in children that are on the diet, two out of three have decreased seizures, and one out of three achieve seizure control.  Please note that the diet is a whole family commitment, and it has to be monitored by a medical team.  Please don't just decide you want to try it, and then do it.  Talk to your doctor, and do it right.  :)

• VNS Implant- This is almost like a pacemaker for the brain.  I've known people that have been on up to thirty-four pills a day to control their seizures, and once having the VNS done, they reduced to no more than six to ten.  It is really, really amazing.

• Surgery- This would be to remove the section of the brain that is causing the seizures.  I consider this to be the last option for seizure control, though I can understand why people consider it.  It has never been an option for us since my daughter's doctor has been concerned that some of her seizures start out as generalized rather than in one section of the brain and spreading. 

How is epilepsy diagnosed?

For all my talk of epilepsy, I haven't really discussed how a diagnosis comes to pass.  Through my experiences, I've noticed that a lot of doctors are hesitant to offer up a diagnosis of epilepsy when a person is having seizures.  It seems that the doctor will always look for another medical reason for the seizures to be occurring.  Most of the time, that is the doctor just being thorough in his diagnosis. The doctors honestly don't want to suggest epilepsy if there is another reason why the seizures are occurring.  For example, in children, if the child is experiencing a high fever, then a seizure can often be experienced.  These are called febrile seizures, and in most instances, they're relatively harmless and the child will usually not experience one again. 

When a person experiences two or more seizures without an obvious cause (fevers, result of a head trauma, etc.), then you're facing a diagnosis of epilepsy. 

First the doctor will take a thorough medical history.  You will usually be asked variations of the following questions:

•A list of any drugs you have taken, including prescribed medications and recreational drugs.


•Any medical conditions you may have been diagnosed with. Some medical conditions may cause seizures to occur.

•Any chemicals you may have come in contact with.

•Whether or not you have a family history of epilepsy.

•Any recent head trauma, infection, or fever.

The doctor will continue by asking what your seizures are like.  This is one of the reasons why it is so very important to document everything you feel before, during, and after.  Have the people that are with you while you are seizing document what you do during a seizure.  TIME IT!!  As I've mentioned before, it helps establish a pattern if you can document everything in relation to before, during and after a seizure. 

You'll have blood tests run.  The doctor is checking for harmful substances in your blood, your blood sugar, electrolytes, etc.  Be ready for them to take several tubes. 

Next step would be to have an electroencephalogram (EEG).  You will have sensors attached to your head that will measure brain activity in all the areas of the brain.  Each sensor will measure sections of electrical activity in the brain.  If there is any abnormal brain activity, then an EEG will find it.  As a side note, it is completely normal to have a normal EEG, but still have a diagnosis of epilepsy.  My daughter has had hundreds of seizures, but with the exception of two or three EEGs taken immediately after seizure activity, all of her EEGs have been normal. 

A head CT scan or MRI can also be ran, but that is usually to measure for any abnormal growths or brain abnormalities. 

Once there is a diagnosis of epilepsy, you start the process of trying to find a medicine to treat the seizures. This could take awhile because every brain is different.  The really positive thing is that there are many really good epilepsy medications available to treat seizures and maintain seizure control.  If medications fail, there is also the possibility of treating the seizures via the Ketogenic Diet.  Additionally, there are surgery options. 

There isn't a cure for epilepsy.  However, in some cases, a person can grow out of them, and after two years of having seizure control on medications, the doctor will usually begin the weening process to see if the patient can retain seizure control off of medications.  We've never reached that point.  We reach about 20 months of seizure control, and it never fails that my daughter has a seizure.  We start the count all over again.