Unfortunately, it looks like Jessie is having seizures again. She is currently in the EMU at Cook Children's in Fort Worth, and the epileptologists believe that she has some seizure activity coming from her hemispherectomy side, from a missed connection and brain tissue left behind in the first surgery. It is deep tissue, and hard to pick up on the scalp EEG.
There is some activity on that side, but thank God, there is no activity coming from her good left side. They did a SPECT Scan (like a PET only it looks at blood flow vs sugar uptake...idea being seizure tissue causes more blood flow to seizure area). The results from the SPECT are not in yet.
In addition, they will do a T3 detailed MRI tomorrow. At that point, they will make the decision on what to do.
Today, she required Ativan to stop a status seizure. She is not doing well, and is eating very little. They are slowly increasing her tegretol, however, we have told the epileptologist and surgeon that if they can pinpoint the tissue and connection, that we want it out and NOW! AEDs and other meds have very little long-term effect on Rasmussen's Encephalitis inflamed tissue.
We continue to trust in God and His Plan, and ask for your prayers for Jessie. We believe in the power of prayer and good medical treatment.
Blessings to All,
Cris
Tuesday, November 30, 2010
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8 comments:
Kristi, Cris and my sweet Jessie baseball pal. Love hugs and prayers. Please let us know if we can do anything.
Love
Susie and family
We are so saddened by this news. Jessie, we are thinking of you often and praying. Love be with you, sweet girl.
We will pray for your sweet little girl. We pray for strength and peace for you, too. We are fighting the same Rasmussen's battle, and are close to Cook's if you need anything.
Millie and John Stanbery
Fort Worth
I'm sorry to hear the news. Sending good vibes your way. Gavyns seizures started to slow down the past two days. RE is a mysterious thing. Hope for the best.
Cristy & Gavyn
I am sorry to hear that Jessie is having seizures. I continue to watch your blog for news about Jessie to get a glimpse into our possible future. Like Jessie, my son also needed a shunt after an extended time following his hemispherectomy without one. It is very brave of you to share your experience with those of us who have and are battling Rasmussen's.
I'm sorry to hear that Jessie is having seizures. My prayers continue.
Sharon C.
Dallas
So sorry to hear this news. I'm praying hard for Jessie.
Praying for you all.
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