Letter to Dr. Chacon

02/13/2008

Jessie's dexterity and use of her left hand is almost nil. She will use it if we ask her to, but otherwise, it just hangs. Yesterday morning, I watched her hold her cereal bowl with her chin so that it wouldn't slide off the bar when she spooned some cereal. Her twitching is the worst ever. We don't know what to do or where to turn.

I can't sleep tonight, so I get up at 2:00AM and send the following letter to Dr. Chacon and Theresa her nurse.

Dear Dr. Chacon,

In the EMU, on 12/14/2007, Dr. Malik diagnosed Jessie with Focal Encephalitis. She was put on a high-dose steroid cycle, which temporarily ended the continuous twitching in her left hand, returned the function of her left hand, and significantly reduced her Simple Partial Seizures; an indication of reduced inflammation in her brain.

On 02/12/2008, and prior, we reported that the twitching was back and worse, and that she had lost almost all use of her left hand.

1.) Has the diagnosis changed?
2.) If not, why are we experimenting with Anticonvulsants instead of going after the root cause and reducing the inflammation in her brain before she has permanently lost function in her left hand and arm or worse?
3.) Are we waiting for test results? Realistically, how long can we wait before we risk Jessie losing function in her left hand and arm permanently?

As parents, we have an innate feeling that something is dreadfully wrong and that the symptoms (seizures) are being treated, and not the root cause (encephalitis). We can cope with her simple partial seizures (hers are short, and don’t hinder her day), but losing function in her left hand and arm are driving us both toward a nervous breakdown.

Sincerely,

Cris and Kristi Hall

http://jessiekelley.blogspot.com/

The twitching is back - Back to the Hospital - Let's try Zonegran

02/06/2008

Jessie's hand twitches constantly again and as bad as back in December. Dr. Chacon wants to try Zonegran, so we do. The twitching doesn't get any better and Jessie does some really strange things. She begins to talk nonsense, and has some SPS with visual disturbances. One, she lost most sight for a few seconds.

So we discontinue Zonegran and let Dr. Chacon know.

The Simple Partial Seizures are back to about one per day again, and she has lost so much function in her hand that she doesn't like to use it. It mostly just hangs down. She CAN use it if you ask her to, but she doesn't like to.

At this point, Kristi and I are more scared than we've been since this whole nightmare started in August of 2007. We feel like there is something dreadfully wrong.

http://jessiekelley.blogspot.com/