Thursday, June 2, 2011

Hemi Redo Summary - Success

Jessie has been seizure free now for 1 1/2 months, and although we are overjoyed and feel very blessed, we are also grounded and realize that you never know what tomorrow will bring in the world of Epilepsy and our kids.

Nevertheless, I thought that I would share some information about the tissue that was removed and the symptoms that it resolved. I do this in hopes that other kids who may be dealing with the same types of recurring seizurs may benefit.

Jessie's returning seizures were characterized by:
1) Discomfort in the stomach (Aura if you will), followed by...
2) Partial, but not complete loss of cognitive awareness. She could still follow basic commands, nod yes or no. But she obviously wasn't "all there". She never fell to the ground.
3) Ipsilateral (same side as hemispherectomy) eye lid twitching. This was very scary, because we thought that the the seizures were coming from the contralateral good side of her brain. This just goes to show you that the "right controls the left and visa versa" isn't 100% for all tissue.
4) When it was over she heaved a heavy sigh, and wiped her nose.
5) Early on, the EEG was inconclusive. As the seizures progressed, the seizures were present, but they couldn't pinpoint 100% the origination point. Even with PET, SPECT, MRI, and EEG it was still a guess for the 2 Redo surgeries.

Jessie's original Hemispherectomy was anatomical. A word of caution that this doesn't necessarily mean everthing is taken out. It is not black and white, but more of a continuum when conceptualizing the varying degrees of hemispherectomy from "hemisphereotomy" to "Anatomical" and everything between, including "functional".

So the neurosurgeon at Cook Children's, in Jessie's first Re-do, tried to make sure everything was disconnected by retracing the corpus collosum. She was having seizures again soon after her first redo. It was obvious it didn't work. He didn't remove any tissue, because he felt that it was all disconnected.

The second Redo, the one that finally seems to have worked, went after small "button-sized" pieces of tissue in the frontal (Gyrys Rectus), Temporal, and Occipital areas. (I don't say lobes, because there were no lobes left from her original surgery).

The surgeon has decided, because of Jessie, that he plans to remove the Gyrus Rectus from now on in most hemispherectomy cases, especially Rasmussen's kids. This tissue, about the size of a few shirt buttons in the frontal lobe near midline seemed to be causing all of her problems.

Another reason that I want to share this, is that I was on Youtube last night, watching kids with post-hemi seizures, and some presented very similar to Jessie's. Her seizures are also on Youtube to compare. I know all kid's brains are different, but maybe this will help others, especially if the Gyrus Rectus does indeed tend to control ipsilateral eylid twitching.

See everyone in California for the Hemispherectomy Foundation Conference and Family Reunion!


Wednesday, June 1, 2011

Jessie and Her Multiplication Facts

In Aledo, 2nd Graders have to learn their Multiplication Facts up to 5's at the end of the year. Well, Jessie was in the hospital during most of this time, so she has been working hard to get the facts straight.

This is a video of Jessie doing her multiplication facts. My beautiful daughter will finish 2nd Grade this year, has one-half of a brain (literally and anatomically), has been in the hospital over 200 days in the past 4 years, 5 brain surgeries, and missed 3 of the 5 weeks while her classmates learned their multiplication facts. Am I a proud Daddy? You bet I am!!

Also, I have to point out that 4 weeks ago she was having 60+ seizures a day, and slept most of the school day away in the nurse's office. It is absolutely amazing what half a brain can do when the seizures are eliminated on the bad side.

Here is the video, and sorry again about bragging.

See everyone in California in July. Horray only one month away!