Saturday, July 18, 2009

A Step in the Right Direction

This past week we had an EEG, an MRI and started Lila on a new cocktail of meds.

We had the EEG at Children's Hospital in Los Angeles. Children's Hospital LA is one of the most depressing places I have ever been. It put this whole seizure situation into perspective. For the EEG, they strategically placed electrodes all over Lila's scalp to track her brain activity. After the electrodes were in place, they wrapped her head in a towel. She looked like she was at the spa...albeit a very depressing spa. They ran the EEG for about forty-five minutes. During the test, they were able to catch one of her seizure episodes. Hooray for that! Later that afternoon, our neurologist called to give us the results. She determined that Lila has focal onset epilepsy. She listed off some of the things that could be causing the seizures, i.e., cortical dysplasia, tuberous sclerosis, or idiopathic seizure activity. We took in all of this info and had ourselves a good-time with Dr. Google. In the future I am NEVER going to visit Dr. Google again. I cried buckets of tears as I read what cortical dysplasia and tuberous sclerosis were. The rest of the week was a haze of crying, being depressed, eating chocolate cake and popcorn for dinner, and wishing that the seizures would end or that the Keppra would start working.

Friday was the first day in a long time that Lila started off as her old self. She was playful, energetic, she almost rolled over and she only had one seizure all morning/afternoon. It was terrific! Around 3:30 PM, she had a seizure followed by eight more that evening. We were so bummed out. We thought we were making progress. Saturday morning we called the neurologist to ask about putting Lila on another medication. She called in a prescription for Zonegran to be used in conjunction with Keppra. The rest of Saturday afternoon was spent watching Lila sleep and have seizures. Saturday night, our friend Brenda invited us to have dinner at her house. It was nice to finally get out and not be prisoners in our own home. We started Lila on the Zonegran that night. On Sunday we once again got out of the house. We went out for lunch, ran some errands, and went by St. Monica's Church to have a priest bless Lila and to say some prayers that the MRI would come back normal and that the seizures were idiopathic.

Monday morning we showed up at UCLA for Lila's MRI. The doctors and nurses all marveled at how social and chubby she is. The anesthesiologist came by to explain how he was going to sedate her and that she would return to her normal self shortly after the procedure. The procedure took about two hours. It usually only takes forty-five minutes but Lila was pretty active and they had to give her more anesthesia. Tuesday morning we had our appointment with the Neurologist to get the results of Lila's MRI. Idiopathic -- meaning no known cause of the seizures! Hooray! We both felt like the weight of the world had been lifted off of our shoulders. When else in our lives will we be completely overjoyed for there to be no information or cause? In addition to this great news Lila has not had a seizure since Sunday afternoon! Her last seizure happened immediately after we left the church. Not sure how to interpret that, but I'm grateful.

Our next appointment with the neurologist is in two months. We will be tracking Lila's development to make sure that she remains on track for her age group. Currently, she is on track and above in her development. Proud Mama talking right there. Right now we are enjoying every single second with Lila and hoping that the seizures continue to be controlled by this new cocktail of medications. We're hopeful that she grows out of the seizures and that her future is as bright as it is for any other child her age.

8 comments:

GeGe said...

Tracy and Brett,
Hi Carrie-Jo's mom here. I too had childhood epilepsy. Mine started in puberty, however. Lila will be okay. You will suffer more than she will. (welcome to the world of parenthood). Seizures do not hurt, and mine were grande mal. The slippery slope is finding medication that works. It sounds like you are on the right track.
I put her on my prayer list the moment I read your post. I have been praying for you and Brett too, for peace and the ability to advocate for your precious little one while you are suffering from so many emotions yourselves right now.
By the way, I have been siezure free for 39 years, and meds free for 29. I hope this helps a little.

jojo said...

I'm another success story of early diagnosis and medication. i don't have epilepsy, but cardiomyopathy, which i've had since a very small child. i'm on a cocktail of drugs, but i wake up each day with energy and drive. my medication has looked after me my whole life and i have great faith that i will live long and prosper! GeGe's right - my mum worried about me a lot more than I did (and still does to a certain degree)..

Don't worry, Tracy. You, Brett and Lila will be OK.

I'm thinking of you all the time and sending you much love and hope for a peaceful and happy future.

xxx

Baby Dreams said...

Hi Tracy, Brett & Lila,

I have been thinking of you everyday, waiting for news of baby Lila.

She sounds like she is going to be just fine. I pray for this for your family.

We are thinking, and praying for you.

Love & Hugs,

Pamela

Carrie Jo said...

Tracy, Brett, and Lila,

Like my mom said, once you get the meds right, I am positive that you will just get to enjoy your daughter again. I hope for your sakes that it happens soon! All the best from Mumbai.

Angelicamom said...

Tracy,
I had no idea all this was going on! You have been through so much already!
You will get the meds right and things will be fine again.
You and your wonderful family are definitely in my prayers. I look forward to a playdate in the park as soon as things settle.
xoxo,
Najla

Mandy said...

Oh I'm so glad she is back on track, she is in my thoughts and prayers.

You guys have been such GREAT parents and i know Lila is greatful. All the best and i hope she continues without any episodes.

:)

Rhonda and Gerry W said...

Thinking of you so often and praying for you all.

Amani said...

Wow, you are going through so much. Poor little Lila, poor parents. I am glad there is no known cause. I hope it all settles down and one day she is off medication and the seizures are in the past.