Thursday, January 7, 2010

Houston, we have a diagnosis.

Thank you for the prayers and support. We now have a diagnosis.

Yesterday evening, Isaiah had a grand mal seizure - full convulsions and loss of consciousness. As weird as it seems, this was what we hoped to see because the video EEG got a full reading of his brain activity during the seizure. It lasted for 2.5 minutes and he came out of it without aid from the Diastat (valium cocktail), a good sign. 

It was a long night because we knew this morning's visit with the doctor would likely shed some light on his condition. 

We were right. Dr. Wilfong came in this morning and confirmed we had a diagnosis. There are four central kinds of epilepsy with 30 different variations - it is a complicated and random condition. Of the four kinds, there are two categories - generalized and localized epilepsy. Generalized can be difficult to treat because they do not originate in any part of the brain and episodes are random. Surgery is not an option for this type of seizure. 

Localized means that they begin in a central area. Often,  the specific point can be identified through an MRI, although Isaiah's brain is still too young and developing to see this spot. 

Isaiah has a localized form of epilepsy that originates in the left frontal lobe of his brain. It is likely a genetic condition, although we cannot find any family members who have had epilepsy. Frontal lobe affects executive decision making and speech, but Dr. Wilfong does not think this condition will affect either. It is not the best kind of epilepsy to have, but it is certainly not the worst kind either. Isaiah's overall development to date is a positive sign, as is the fact that he went seizure free for three weeks recently. Also, there is no forecast on his future. He'll be who he is and we do not have enough information to know anything more than that his prognosis for a healthy future is probable.

So what's next?

Isaiah will go back on the Clonazapam today and then transition to Zonagram, a safe anti-seizure medicine that has minimal side effects. These meds only work in 60 percent of patients, so we may end up changing medicines to find one that works. If he doesn't respond to medicine, we will then conduct another MRI to try to see more clearly the specific area affected. The current MRI shows nothing, but there is a higher resolution MRI (I think of it as MRI HD) that we can do when he is a little older. An alternate treatment is surgery to the frontal left lobe to remove the problem cells. Obviously we don't want surgery, but Dr. Wilfong said this is actually a good course of action if the seizures are not controllable and the risk is minimal (outside normal risk with operating on a young child) and the ability to solve the problem is high. It is a good option, although not for right now.

A few other random notes:
  • Seizures don't hurt him at the rate he is currently having them
  • His sleep is categorized as "normal" even though we know it is not
  • We will try store bought formula beginning next week
  • The care at Texas Children's Hospital has been outstanding
  • Prayers for a diagnosis worked - praise GOD
We are thankful and relieved. We will continue to live normal lives and we are happy that Isaiah is healthy, developing normally at a rapid rate, and that he seems to be very "normal.: We are so very blessed. We come home tomorrow.


Carolyn said...

LeeAnn -- give the little man a kiss and the big man a hug for me. I am so happy you have real information and a potential path forward.

Sarah Halley said...

The power of prayer. I love you guys.

The "Burbwalds" said...

What a relief for you to finally have answers! We will keep praying for a clear and speedy treatment plan!

Anonymous said...

What a love bug of a baby you have. I came across your blog from Grant and Brooke's (I was friends w/G in college). I just wanted to let you know that I have been saying my prayers for your entire family. I'm so happy you have answers-great progess. I have a 14 month old little girl and can't imagine the stress you've been under. Whatever you're doing now is working! Eat, pray and love, love, love. I'll continue to say prayers for your strength!

the sharpes said...

i'm so glad things have gone smoothly for you all in Houston! It is pretty impressive isn't it?! I'm sure you all are exhausted. I've been thinking about you all this week and you've definitely been in my prayers! Praying for a smooth and safe trip home and continued forward progress for sweet isaiah!