Sunday, July 17, 2011

Epilepsy Statistics

I just came across a very informative article on 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.


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.

Thursday, July 7, 2011

Meds, Meds, Meds...

The last few months have been 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.

Valproic Acid

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.