Tim,
We see Dr Kossoff for neuro at Hopkins and Hoon at Kreger Julia
will be 2 in November. Our Julia has had a tough start with a brain
tumor, infantile spasms that resolved to multi focal in the surgery /
tumor area and she as also been diagnosed with CP and aicardi
syndrome. Basically I have gotten to the point that I don't care
about the diagnoses it's simply a label....WHATEVER!
to get rid of the epilepsy label I think Julia would be a totally
different kid if she didn't have 3 - 7 seizures a day. These
diagnosis get be the best doctors around Dr. Hoon is the Director,
Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine and
Kossoff at Hopkins is the go to guy for infantile spasms and aicardi
syndrome so, I feel that we're in good hands. Dr. Hoon wants me to
let him know when we start and all about her progress. I think he
would really like to study HBOT but, cant because of saftey concerns.
The place I am going to take Julia is called Advanced Hyperbarics
(the web site kinda sucks but here is is http://www.mdhbot.
maybe I can bater my skills as a software engineer for Julia's
treatment. I just called today and they have asked me to fill out a
medical records waver so, they can obtain Julia's records. They are
going to review her records then call us for an appointment. I am so
excited!!! Just an FYI I have read that HBOT increases seizures in
some people but, then the seizures get better however, in others the
seizures are gone after a few treatments. I want to try HBOT because
if I don't I will always wonder...."what if I had"
Wendy
On Fri, Jul 24, 2009 at 10:02 AM, TIMOTHY BALDWIN<tbb1@prodigy.
>
>
> Hi Wendy,
> I've lived in Baltimore county all my life of 52 years, currently I see a
> neurologist at Hopkins, Dr. Gregory L. Krauss. I was surprised when he told
> me that one of his teachers was my previous neurologist, Dr. Alan Krumholz
> who's a professor of neurology at Univ.of MD Hosp.. I still live in Balto.;
> but, since '91 I've been working at the Food and Drug Administration (FDA)
> in D.C., what a trip that is. Because of my epilepsy I don't drive and use
> public transportation down and back each day. In the A.M., I take a bus to
> metro to a MARC train which connects the two cities, Penn. Station or Camden
> Yard in Balto. to D.C.'s Union Station which is only 1/4 mile from the U.S.
> capital building. Each day, I leave home at 6:20am get to work at 8:20am
> work 9 hrs. leave at 5:15pm and get back home at 7:35pm.
>
> --- On Thu, 7/23/09, Wendy Baur <wendy.sue@gmail.
>
> From: Wendy Baur <wendy.sue@gmail.
> Subject: Re: [epilepsy] Re:HBOT Treatment
> To: epilepsy@yahoogroup
> Date: Thursday, July 23, 2009, 9:20 PM
>
>
>
> I talked to Julia's doctors at Kennedy Kreger and John's Hopkins in
> Baltimore, MD today and neither opposed to HBOT so, I am going to make
> an appointment at the HBOT place to find out what the next step is.
> There was one case studay that I read where the seizures got worse
> but, then got better. On the other hand I also read studies where the
> patient had HBOT and no more seizures so, I figure why not what do I
> have to loose besides money!
>
> Wendy
>
> On Thu, Jul 23, 2009 at 7:57 PM, <caBJLB@aol.com> wrote:
>>
>>
>> We have not done it yet but we are also seriously considering it here in
>> Wisconsin for my daughter meghan. ?Where do you live? ?Do they have places
>> in your area?
>> jennifer ?Bertram
>>
>> [Non-text portions of this message have been removed]
>>
>>
>
> [Non-text portions of this message have been removed]
>
>
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