Saturday, February 23, 2008

Diagnosis - Focal Encephalitis in the Right Occipital Lobe


This is a letter that I sent out to everyone that might be concerned for Jessie after we were discharged from Cooks on 12/15/2007.

To Everyone that knows our daughter Jessie,

Thank You so much for all of the support and encouragement that you have given us over the past 5 months. From the school, to our friends, to our family, everyone has been great, and we appreciate it so much. Also, we apologize for not keeping everyone up to date. We realize that this is new news to some of you, and we apologize for that. We also apologize if we have missed anyone and they receive this email second hand.

In August, Jessie had her first seizure, and in September, she was diagnosed with Focal Onset Seizure Disorder (A fancy word for Epilepsy). Her seizures were not what most people think of seizures, like what you see in movies. Most of her seizures were blank stares and small movements. Anyway, after many doctors visits, neurologist, epileptologist, and hospital visits…and after being scanned with MRIs, EEGs, CATs, PETs, blood tests, spinal tap, and lots of other stuff that we don’t understand, Jessie received a new diagnosis last night at Cook’s Children’s Hospital after being Video EEG monitored for 3 days. She is out of the hospital and home with us.

She was diagnosed with Focal Encephalitis. This is NOT an infectious or contagious disease or a disease at all for that matter. It is a condition that is the result of a one in a million freak occurrence. It could have come from literally hundreds of different things or she may have been born with it. It caused a small lesion in the occipital lobe of her brain (back of her head) about the size of a quarter. It is not a tumor or cancer. You can’t catch it.

She will be treated with Anabolic Steroids for 7 weeks. So watch out Barry Bonds in T-Ball next year she will be juiced up J. The best case scenario will be that the steroids stop the spread of the lesion and she is completely cured. That is what we hope and pray and ask you to do the same. The prognosis is good for treating this type of condition with steroids.

For those of you that are around Jessie on a day-to-day basis, here are some side effects that you may see from the steroids.
1) She may be a bit grumpy (which as you know is not at all her personality), so be patient with her
2) She may put on some weight temporarily
3) She will be more susceptible to infections (so keep those hands washed)

She has a hard time moving her left hand the way she wants to, because of the seizure activity, but we hope this will clear up as well.

Many of you have asked if there is anything that you can do, and we appreciate the thought. What Jessie needs now, the most, is just to be treated normally. You can welcome her back from the hospital or just say hi. Just be normal, because that is what she is. She hasn’t lost any mental capacity at all. She is the same sweet Jessie that you have all come to know and love that likes to read and sing songs and play and be a little girl. She will be back at school on Monday.

Sorry for such a long email, and we will try to keep everyone up to date on the progress. Please feel free to pass this along to anyone that you know would be interested. If you have any questions, do be afraid to call us or send us an email. We don’t mind talking about this at all, and we are being very open with it to her and everyone we know.

Warm Christmas Wishes to Everyone,

Cris and Kristi Hall

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