Re: Zalewski update -- world

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05/19/26 2:44:20pm

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Subject: Re: Zalewski update

Author:
krz

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Date Posted: 12/28/05 7:35:23pm
In reply to: pa 's message, "Re: Zalewski update" on 12/28/05 4:31:19pm

>thanks for the update krz, our thoughts are with all
>of you. when does tommy have to go back to school? how
>about work for you and geo?

Tommy and at least in theory Danny go back Monday. I am supposed to start 1/6 (Friday of next week) although new employee training is Tuesday. Geo to head back Tuesday as well.

At this point - it looks like home either late tomorrow or Friday. We were able to capture one seizure on EEG yesterday - hoping for one more. If not - they will give him a load of dilantin to quiet his brain for awhile and then start on a new drug as a supplement to the phenobarb. The good news is that all of these seizures are coming from the same focal origin -- and Danny has many areas that start seizure activity. Essentially - this means that the phenobarb is controlling the other areas and controlling it well enough to keep these seizures from spreading to the whole brain. What we need is a drug that will quiet this one spot better than phenobarb alone.

Doc we're seeing is suggesting a diagnosis for Dan - something called Rubinstein Taybi Syndrome. Just starting to look into it now - and not sure it gives us any more guidance then we've had before. At this point a label might just make health coverage easier - not much more than that.

Children's has recruited 3 new epileptists (pediatric neurologists with epilepsy specialization) 2 of the 3 with PhDs who will be setting up research labs in the new addition to Children's ready for completion in 2006. According to the doc we've seen on this admit - the largest referral base for Children's Milw has become northern IL. Pretty amazing for a relatively small town. Again, we are so grateful for the care here - we may be at one of the best places in the nation for pediatric neurology at this point.

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Replies:

Subject	Author	Date
Re: Zalewski update	pjk	12/28/05 7:44:41pm