Is There Something Else Wrong With Your Kid?

Most of our family members, friends, and new acquaintances really don't know much about epilepsy.  We appreciate that others feel comfortable enough to ask us questions about his condition, and happily answer them to the best of our ability.  However, I do feel especially alert and protective when asked certain things.  Questions or comments that induce the Momma Bear in me may include:

"Your son is always unhappy, that's not normal."

"Have you had him assessed by a Psychiatrist?"

"Does your son have Autism?"

I am also often offered advice of how they would deal with misbehavior.

Now don't get me wrong, I am comfortable with these types of questions when I feel it's given with sincere concern.  I will admit it could be possible there are other conditions contributing to his behavior, but none we know of with certainty.  On the other hand, I'm not too happy when I feel these types of questions are posed with a judgmental and somewhat critical air. 

How to tell the difference?  Well, it's not simple.  I have to stop my mind from reacting instinctively and do my best to give the person the benefit of the doubt.  Sometimes it's not so easy to be generous in thinking the best of other's intentions. 

In attempting to answer some of these questions myself, it only takes a glance at our son's seizure history and the amount of medication he is taking, and has taken in the past, to see it's amazing he's doing as well as he is.  Wouldn't you be prone to mood swings and depression if you were that frequently sleep deprived or disoriented from seizures, and add onto that massive amounts of medication???

The topic of our son's behavior and cognitive abilities comes up frequently in our discussions with our Neurologist, and he has a word that completely sums up what our son is going through....Encephalopathy.

I turned to MedicineNet.com to describe what encephalopathy is and it's symptoms.

What is encephalopathy?
Encephalopathy is a term that means brain disease, damage or malfunction.  Encephalopathy can present a very broad spectrum of symptoms that range from mild, such as some memory loss or subtle personality changes, to severe, such as dementia, seizures, coma, or death.  In general, encephalopathy is manifested by an altered mental state that is sometimes accompanied by physical manifestations (for example, poor coordination of limb movements).

The term encephalopathy is very broad and in most cases, is preceded by various terms that describe the reason, cause, or special conditions of the patient that leads to brain malfunction.

The cause of encephalopathy in our son is clearly Epilepsy.

What are the symptoms of encephalopathy?
Despite the numerous and varied causes, at least one symptom in all cases is an altered mental state.  The altered mental state may be subtle and develop slowly over years or be profoundly obvious and develop rapidly.  Often, symptoms of altered mental status can present as inattentiveness, poor judgement, or poor coordination of movements.

Other symptoms that my occur include:lethargy, dementia, seizures...

Often the severity and type of symptoms are related to the severity and cause of the brain disease or damage

So to answer the questions mentioned at the beginning of this post, our son's behavior and mood is directed related to his epilepsy. 

Epilepsy Statistics

I just came across a very informative article on SheKnows.com intended to create some awareness regarding epilepsy.

It included some incredible numbers like the fact that epilepsy and seizures affect 3 million Americans of all ages.  That's double the number of people known to be affected by autism.

Go to SheKnows to read more.

Topamax

The most recent addition to our son's med cocktail is a drug called Topamax (Topiramate).

The improvements to our son's health have been amazing!! He has gone from having 2-8 tonic clonic seizures per day along with many absence seizures, to only 2-4 per week!

Now I don't want to get my hopes too high regarding this drug, seeing as we need to get past the honeymoon phase.  However, I can't help but feel grateful for any improvement to our son's health.  He is able to communicate better, wants to play with friends more often, and is regaining a desire to pursue his interests.  He is even picking on his little brother with renewed enthusiasm.

The recognition of any side effects from Topamax is still up in the air.  It is particularly difficult to tell what drug is causing "what" because he is on 3 different medications, but I'm keeping a watchful eye and hoping we don't see anything too severe.

Another possible treatment we are looking into, and has been received by others with success is the Ketogenic Diet.  We have several friends who have found the diet to work miracles in their children's seizure control and their overall well being. They are a wealth of knowledge and support if we do decide to go down that route.  For now, we are in discussions to with our Neurologist and Dietician to possibly start the diet after we've had time to monitor Topamax.

Oh there's more...we've added 2 more pieces to our puzzle:
A Naturopath who specializes in epilepsy and
An upcoming Ictal SPECT.

Meds, Meds, Meds...

The last few months have been ridiculous...so many medication changes!
In fact, I've been monitoring our big guy's seizure activity 24/7 for the last 2 months.  I slept in his room, and watched his every move so I could track EVERYTHING and know exactly what these drugs were doing, good or bad.

First off, our Big Guy was taking 5 different medications.

Keppra
Clonazepam
Lamotrigine
Valproic Acid
Hydrocortisone

Good news, he is no longer taking Valproic Acid.  I've talked before about the awful decline our son experienced as a result of this medication.  We're done with it.

Next we weaned him off the Lamotrigine because it didn't seem to help, and actually seemed to increase seizures.  Oh, it was awful.  We were so very close to taking our poor boy to the hospital because we thought he was in Status.

One night I counted 7 Tonic Clonic seizures in his sleep and countless absence, it was extremely upsetting. What was even more frightening was the development of new seizures, which were probably Complex Partials.   Our son would wake from sleeping and stare off into the distance, completely unresponsive and then look terrified of whatever he was staring at.  A few times he screamed in fear.  It was heartbreaking to watch and then hear him talk later about seeing something scary. He would ask, "When is this going to end"?

Since he's stopped taking the Lamotrigine, he's also stopped having his "scary" seizures.  No one misses those ones.

Well, I was feeling pretty good that we were down 2 meds, but there was another that we were leery to begin in the first place...the hydrocortisone. Hello, it's a steroid in an 8 year olds body...not good.  He gained probably 15 lbs within 6-8 weeks,  his blood pressure was increasing along with mood swings. We were working with the assumption that he had an autoimmune condition, and a steroid should have cut seizures down drastically.  It did not.

As much as these medications can do good, they can also do harm.  It is a huge relief to not give them to our son any more.  However, when so many medications are taken away there is usually another to take their place.  Our newest, and possibly last medication option: Topiramate, otherwise known as Topamax.

Famous Epileptics

A friend shared with me an interesting slideshow of famous epileptics featured on the LIFE website.

Take a look!

Family Fun Part 3

Day 3 To Do List:

- Geocaching...of course.
- Visit Prehistoric Creatures...who doesn't in their time off?
- Soak up some overdue sun...this one is permanently on the list.
- Wrap up our mini holiday...sad but true.

Took a brief break from our traveling to pick up a cache.

He had to a photo taken next to the first dinosaur he saw!

Yes! Real Dinosaurs!!

Always a nice performance for the camera.

Cute Baby is definitely more excited about his walking than being surrounded by dinosaurs.

A much deserved rest before heading home.

Close to Home Fun Part 2

Everyone in our family feels more alive in the outdoors, especially in the mountains.  So, naturally, we headed to the mountains on our 2nd day of family time.  We hiked, found geocaches, and had a little picnic where the boys were eager to help out with a camp fire. The day was just full of smiles.

Another Geocache!! 

Cute Baby learns early what to do with rocks when near a body of water.

He feels like his older brothers now!

Our happy hiker.

Geocache #2 for the day.

Happy Hiker turned Pirate.