This
conference draws approximately 500 people -- families
and individual affected by hydrocephalus. The "faculty"
are a broad array of renown neurosurgeons, neurologists
and PhD researchers from the medical advisory board
and some experts from the local university & hospital
-- in this case Johns Hopkins. The conference has
a mix of "connecting" sessions that are
participant to participant, parent to parent, plenary
sessions and single speaker sessions.
Sessions I attended
and brief comments:
Anatomy of the Brain,
Pat McAllister, PhD., Wayne State University
Placed a shunt in a plastic brain. Didn't realize
the obvious "gush" of CSF when the stylus
is removed. Is there a risk of overdrainage?
Fathers of Infants with Hydrocephalus
Great connecting session with about 20 dads. Makes
you feel like you are not in the boat alone.
Building Support for Hydrocephalus, John
Lawrence, Chief of Staff to Nancy Pelosi
Great advice and playbook for how to work the congressional
food chain. He forwarded his speech to me afterwards
so I will attach that. But the killer part of this
was that his 10 year old son Elijah, who has hydrocephalus,
said "thank you" by signing "What a
Wonderful World" acapella and spectacularly.
It was incredibly moving.
Seizures & Hydrocephalus, Eric
Kossoff, MD, Johns Hopkins
Largely a review of newer seizures meds and their
side effects (like Topamax is nicknamed "Dopamax").
Keppra actually has a cognitive benefit for language
acquisition though it is noted to cause irritability.
Dr. Kossoff, from Hopkins, puts many patients on a
ketogenic diet, similar to the Atkins diet, which
has a significant impact in reducing seizures in certain
patients.
Shunt Malfunctions & Infections,
Paul Wang, MD, Johns Hopkins
I wasn't able to attend this whole talk but it gave
interesting data about anti-siphoning devices and
overdrainage scenarios. The slides were pretty self-explanatory
so it will be good to see them.
New Theories in the Dynamics of Hydrocephalus,
Curt Stewart, Brainchild Foundation
This was a lay persons overview of the current theories
of the neurosurgeons and PhD's working together with
the Brainchild Foundation. The core theory is about
how the heart pumps all fluid, including CSF, through
our whole body and is dampened, or pressure regulated,
at appropriate points where cell walls are thinner.
This theory is finding that there is damage to the
dampening system in the brain in hydrocephalus and
is potentially treated through medications that temporarily
stimulate the heart rate. This group put out the "10
things we don't know about hydrocephalus and should"
paper and it is good to see people working on something
new in hydro research.
Learning Disabilities & Neuropsychological Testing,
Aaron Zabel, MD, Kennedy Kreiger
Great presentation that emphasized not being sucked
into generalizations like NVLD and looking at the
kid functionally. What is the kid not doing that you
need him/her to do? Let's look at the skill development
necessary to accomplish that. He covered a lot of
data based on work by Maureen Dennis that separates
assembled processing from associative processing.
The nature of the brain injury associated with hydrocephalus
often makes the former more difficult. It is hard
to remediate but quite possible to work around it.
Assembled processing is more relational in nature
where you figure things out by their relationship
to another where associative is more of a rote process
of connecting things sequentially. Hence reading is
easy but reading comprehension is hard. This was a
fascinating and practical talk. He advises not doing
neuropsych testing until 6 years old.
Clinical Trials from a Patient's Perspective,
Gordon McComb, MD, UCLA & Mike Williams, MD, Johns
Hopkins
Interesting presentation on what clinical trials are
about, the ethics, and some good help in determining
if they are right for you or your family member. Makes
clear that it is more about avoiding harm than getting
access to a more beneficial treatment.
Slit Ventricle Syndrome, Hal Rekate,
MD, Barrows Institute
Fascinating discussion that speaks directly to my
son William's condition. Dr. Rekate believes strongly
in testing ICP at apparent shunt failure times and
has a concrete decision tree for ventricle changes
(or lack there of) in the face of varying pressure
scenarios. He clamps off the shunt to see what happens
with the ventricles and the pressure and then has
different diagnoses and protocols as a function of
that including ETV for supposed "communicating"
hydrocephalus. He is a firm believer in trying to
live "shunt free" if possible.
Advocacy Day Planning, Jim Kranz
HA provided a script and organized us by state. We
rehearsed and then fine tuned the script. It was a
good exercise in consistent messaging to legislators.
Advocacy Day
Met with health and legislative assistants for Senator
Cantwell and Representatives McDermott and Insley.
Good constructive, brief meetings that did some awareness
building on hydrocephalus and asked for support of
an upcoming resolution to direct NIH to dedicate more
resources to hydrocephalus research. We also took
pictures on the the capitol steps with the 150 people
in attendance.
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