Epilepsy Research

In an attempt to better understand the possible diagnosis of my daughter, I have done some research on Childhood Occipital Epilepsy. I think that this will also help others to understand the syndrome as well. (Please remember, as I remind myself as well, that they have not diagnosed Elizabeth with epilepsy, but have given us a great place to start. The neurologist believes that this is the most likely diagnosis.)

Epileptic seizures are brought on by a bombardment of electrical pulses to the brain. The average brain, at any given time of day, receives 80 electrical pulses per second. At the time of a seizure, the brain can be receiving up to 500 pulses per second. The pulses can affect only a specific lobe of the brain (partial), but all seizures have the ability to spread throughout the entire brain. In Elizabeth's case, it seems as though her seizures are limited to the occipital lobe. The occipital lobe is located at the back of the brain and it's main function is the operation and control of vision. A seizure to this area of the brain can cause loss of or blurred vision, hallucinations, etc.

Unfortunately there are many types of seizures and many forms of epilepsy. I am not yet 100% convinced that Elizabeth's seizures are occipital. I feel as though there are other symptoms (incontinence, confusion, length of episodes, etc.) that aren't covered in the spectrum of occipital epilepsy. Maybe her epilepsy is not partial (limited to one lobe of the brain) but rather spread to additional areas.

Elizabeth's EEG on Tuesday will mainly focus on the occipital lobe of her brain. The test will take roughly an hour, depending on her cooperation. We will be able to get the results an hour later. I am eager for answers and to talk about treatment. Assuming that her case of epilepsy (no matter which type) is text book, she can easily be treated with medication. Childhood epilepsy is often gone by the time the child reaches puberty. EEGs are run every three years to adjust or remove medications accordingly.

Taking a minute to learn about the syndrome has given me so much understanding of what Elizabeth is going through. Even though she doesn't remember the episodes, she must feel very alone and scared when it is happening. As her mother, I wish that I could clap my hands and she would snap out of it. There's nothing that we can do to help pass an episode; we just have to wait and all the while, let her know that we are there with her. Anybody who has a relationship with a child (mother or father, grandparent, aunt or uncle) wishes that they could take the pain that child is experiencing (a burn, a cold, or a seizure) and place it upon themselves. Elizabeth is so small, innocent, and undeserving of disease. As much as I wish I could fight all of her battles for her, I can't. Instead, I pray for Elizabeth's strength to get her through whatever her diagnosis might be. Nathan and I (among many others) will be there to help her along the way.

Having a "sick" child most certainly puts a lot into perspective. Life is very precious and we may have taken our health for granite. Because of the seizures, and the absolute randomness of their occurrences, Elizabeth needs to be monitored around the clock. I think that she's already tired of us asking her, "Elizabeth, are you feeling OK?"!

I am so grateful for all of the support that we have received from friends, family, and medical professionals (I felt terrible for the nurses and doctors that were working in the ER on Christmas Eve). We are blessed with such charismatic relationships and thank each and every one of you for your support.

I will continue to update my blog with Elizabeth's status.

Trish VanDusseldorp


http://www.livestrong.com/ has a lot of great information on not only epilepsy, but many other syndromes, diseases, and ailments. I got tired of trying to read between the lines filled with medical jargon. It's a great website if your looking for answers.

Christmas in a Nutshell

MERRY CHRISTMAS AND HAPPY NEW YEAR!

Despite a few hiccups in our holiday celebrations, the VanDusseldorp Family Christmas was so much fun! It took Abigail a few days to fully understand what the Christmas tree and Santa Clause were all about. Eating her daily advent candy helped her along! Elizabeth didn't need any convincing at all! In fact, I think that she was ready to celebrate Jesus' Birthday as soon as Easter had passed!

We kicked off the holiday season the day after Thanksgiving. We went to the Englewood tree lighting and froze!

There was a very large hill of snow. Abby struggled to the top but eventually made it.

Elizabeth must have climbed and slid down the hill 20 times.

In the days leading up to Christmas, there was shopping, baking, crafts, and holiday programs.

The kids at Christ Community sang Away in a Manger.

Elizabeth was invited to play Mary in her pre-K Christmas program. She says that the baby Jesus was a little too heavy for her.

The Annual White Elephant Christmas Party was a blast, as always! This year, we decided to change things up a little bit and host the party at The Celtic Tavern. We had a great private space with couches and a fireplace. It turned out to be a great party.

Dan and Julie VanDusseldorp.

Cara models her White Elephant gift.

Jeremy and Lindsay VanDusseldorp.

After our "Christmas vacation" to Grand Lake, it was time to get serious. There was shopping to finish, cookies to bake, and wrapping to be done. It was a hectic time, but the product was well worth the effort.

Grand Lake is always beautiful, but it's so quiet and peaceful in the winter time. I can't imagine a better retreat to spend time with friends and relax. (Thanks again, Dana. You and you're family are so generous.)

Christmas Eve finally rolled around. Elizabeth was about to bust with anticipation! Unfortunately, she had another episode (similar to the one she experienced over the summer) and we had to take her to the emergency room. We were in the ER for an hour and Elizabeth was discharged to go home. We were still able to read The Night Before Christmas and get to bed at a decent time.

Abby must have ran around in circles all night long! Where does she get all of her energy?

Nathan and I pose for a Christmas photo.


Christmas Eve at Great-Grandma Sandy's has always been a tradition. Elizabeth was pouting because we had to eat dinner before we could open presents.

Such a sweet face! I adore how eager and innocent the kids are. They love Santa and Jesus and Christmas. It's an innocence lost and found again when you have children!

After a great night's sleep (not for Nate and I, we were up all night worried about Elizabeth), Christmas morning finally arrived! Elizabeth woke up early and came running into our bedroom. It took us a little while to make our coffee, put the cinnamon rolls in the oven, and get the camera all set up (a painfully daunting experience for children, as I recall from my youth).

Daddy (a.k.a. Santa Clause) picked out a guitar for Elizabeth. She wants to learn and be able to sit in on Dad's banjo lessons.

The girls also received a big wooden train set.

Two is a great age at Christmas. Abby enjoyed opening gifts and sincerely enjoyed the contents of each and every package she opened. She often said, "I love it!" while hugging the gift!

Christmas day brought us to church and then to YaYa and Pops' house to visit with all of the family and to exchange more gifts.

Abigail opening gifts at YaYa's. She looks exhausted, but that didn't stop her.

Both of the girls were spoiled rotten. They were showered with gifts from YaYa and Pops, Great-Grandma and PawPaw Hebert, Aunt Sharon and Uncle Ron, and Great-Grandpa and Grandma Kavadas!

Then, it was off to the VanDusseldorp Family Christmas. The girls were in dire need of a nap, so we took them home to nap for 45 minutes before heading over to Grandpa and Grandma's house.

Caleb was also at a really fun age for Christmas. He doesn't quite understand all of the themes of Christmas, but the kid loves to tear into presents! He had a blast!

This was Jude for most of the evening. He got to sit back and watch while his parents opened his gifts for him! That's the life.

All four of the kids had a great time together. Elizabeth and Abigail loved to help their baby cousins open their gifts.

I think that Caleb and Abby are going to be great friends!

All in all, it was a great Christmas. We wish you and your family a very, very happy new year, with hopes that 2012 will bring you happiness and health.

God Bless!

Love,

The VanDusseldorp Family