From: Kraig Warnemuende <ad6075@wayne.edu>

Date: Fri Apr 8, 2005 7:02:32 PM America/Detroit

Subject: Keren’s first neuro appt.

Hi folks!

I'm sending this out to the whole family so all of you can be in the loop. For those who haven't had the latest update, Keren's regular sleep study the other week showed the possibility that she was having some seizures during the night. As the sleep study isn't meant to diagnose that type of thing, we were sent to a pediatric neurologist to delve into it deeper. Yesterday was our first appointment with Dr. G, the neurologist.

At the moment we don't have any more data concerning Keren specifically--the appointment was for consultation. Dr. G was great and explained things quite clearly. She got Keren's case history, and actually has a little experience with T18, having had another patient who was T18 (totally different personality, though! One who was chronically upset). Dr. G. showed me the graph readout of what she had received from the sleep study. In that study, four points in the brain are monitored by electrodes. The chart showed that something was going on in the right side of Keren's brain that then affected the left sign. Dr. G was quick to point out that this was not conclusive, because an EEG (what's used for monitoring seizures) looks at many more parts of the brain. However, it was enough to show that something was happening that needed to be evaluated.

I asked for a little more information as to what exactly seizures are and what their effect is (I knew the general idea, mainly because many folks on the email list we're a part of have had this experience with their kids). In layman's terms, the gist of a seizure is this: certain cells in the brain that are abnormal (in Keren's case, that's a "duh" as they all are!) start malfunctioning--I think Dr. G said something about the cell lining is "irritated". This triggers a chain reaction where chemicals and various enzymes start pouring in and exacerbate the problem. It usually begins in one part of the brain and then triggers other parts of the brain, and then other parts of the body. The concern would be that the more a seizure occurs in one place and triggers other places, the more likely those other places will start having their own seizures. This is where medication comes into play. How long does one stay on medication? Basically until it's observed that the person doesn't have seizures any longer (at first it would be while they're on medication).

Dr. G's feeling is that the only way they can really determine if Keren is having seizures is to do what's called a continual EEG (I think this is because if Keren is having seizures, she doesn't display them in a way that's observed). The continual EEG is for 24 hours, and we were actually able to get an appointment tomorrow to get it set up (please pray that the referral comes through in time!). We'll go in and Keren will get all the monitor leads attached, and then her head swathed up so they won't fall off. All these are attached to a box that fits in some sort of "backpack"--it should be interesting to see how this all works out. Fortunately, even though it will be inconvenient, we will be able to let it run while we're at home, so a slightly more natural setting! The following day we'll go in and turn in the equipment and then let them analyze the data.

I think that's everything.... As you can see, we won't know for a bit what exactly is going on. I'm praying that it's not seizures, but I do know there is a high likelihood of it.... I know that even if Keren does have seizures, there are a lot of the other "triers" we know who live with them, no problem, and that's an encouragement. I guess it was just the one possibility that I wanted to completely avoid. Keren is learning so much and progressing in so many exciting ways, and my biggest fear is that she could regress. It's made me realize again that I've got to give her to God and trust him with her care. Kraig's handling this with a lot less worry than me (thank the Lord) and has been a good shoulder to lean on :) .

Anyway, that's the long note! Once we know more details we'll update you. I haven't sent out a general update yet, but it's not hidden knowledge or anything--anyone who's praying is welcome!!! :)

Love you all lots,

Loren for the gang