Thursday, December 2, 2010

Seizures and What to do Next

Jessie is having a much better day today. She is eating again, smiling, and active. She is a different kid than she was yesterday. She even did her homework today. Praise God and the doctors for watching over our girl !!

Her seizures today are much less severe and less frequent. Because they had to give her rescue medicine 2 days ago (Ativan) for a Status Seizure (one that won’t stop on its own), and other sedation for yesterday’s MRI, it appears that the cycle is broken, temporarily. This buys us some time and allows her to gain strength, eat, and rest from the seizures. Here primary epilepsy medication (Tegretol) has been increased, and will continue to increase to hold off the seizure activity.

Dr. Hernandez (epileptologist) came by today, and showed me her EEG. It was obvious that she was having seizures in the right hemisphere. He also showed me her MRI today. He showed me that there was some leftover tissue and two connections that were the suspect areas. The SPECT scans should verify this. We will know tomorrow.

The good news is that there is no seizure activity in the Left Hemisphere (her good side). This, of-course, would be devastating news for a child that only has the left half of her Cerebral Cortex.

So what are the next steps? Well, unfortunately, it looks like Jessie will have to undergo brain surgery to have this tissue removed and the connections clipped. Medication is usually very ineffective, in the long-term, for Rasmussen’s tissue, and Kristi and I don’t want to take a chance with the connections that are still there. The last thing that we need is seizure activity crossing over to the good Hemisphere. This follow-up surgery is not uncommon in the Hemispherectomy community…which is unfortunate. In the “Hemi Community” we call this surgery a “Redo”, which is bit of a misnomer.

The rehabilitation should be much easier this time, and her hospital stay should be much shorter than in 2008. As you all know, Jessie an extremely strong-willed child, and she is going to be fine, especially with all of you praying for her and God continuing with His glorious plan for her.

Thanks to everyone for your prayers, cards, gifts and visits. The prayers are the most important thing. We ask that if feel compelled to do something for Jessie over the next few weeks, please consider a donation to one of the following Public Charities in Jessie’s Name. You can donate online or by mail, just specify “Jessie Hall” in the comment field. All three below are IRS 501c3 organizations, which means you get a nice end-of-the-year deduction.

The Hemispherectomy Foundation :
The RE Children’s Project :
Citizen’s United for Research in Epilepsy :

Blessings to All for your support over the past few days.



Hollis said...

Thinking of you all, and sending our love and hope from MA. Hollis is still having seizures too. Had a tonic-clonic for the first time a couple weeks ago - absolutely devastating.

Jan said...

Thanks so much for your update. Its such a long road for you all. Our kids are so strong. Keane is in year 7 with szs. having them everyday and often status once a week with ativan. He continues to not be a canadite for surgery as they effect his whole brain. (we hope for a cure for him some day) he now has been diagnosed with Lennox-Gastric Syndrome. Last week the ambulance was called to school for him, he had cracked his head open, even though he wears a helmet at all times, and lost a lot of blood. He is doing fine now. Your family is strong and glad God is in control and that you get your strength each day from him. Jessie is a very strong girl. So much for her to go through. Bless her heart.

Deirdre said...

Thinking of you as Jessie faces this new challenge. We were devastated to hear that the seizures had returned but very relieved they are not coming from her left hemisphere. Once the remaining right hemisphere tissue/connection is removed, Jessie will finally be able to put this terrible disease behind her. With all our best wishes and thanks for your support for us in Freya's journey with RE.
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