Wednesday, September 1, 2010

Hydrocephalus Symptoms - Not by the Book

Hi All,

I just wanted to report that Jessie is doing so much better since her shunt
placement, and her neurologist is beginning to reduce Tegretol again, since it
turned out to not be seizures (even though it looked like seizures).

So, I have made a note of her pre-shunt symptoms, and noted which ones are
influenced by the shunt...or at least the best we can tell. This is not
science, but one parent to another to say "this is what we've observed". I hope
that it is useful in some way.

1.) rocking - Much Better, less rocking, even when she is excited.
2.) nervous hands - no noticealbe change
3.) hand strumming - completely gone (Many of you saw this at the Hemi Family
Retreat. She doesn't do it at all any more)
4.) tummy episodes -reduced significantly
5.) vomiting - reduced significantly
6.) biting clothes - gone
7.) hurts when we rub her neck - I don't think this is related
8.) left bug eye - gone
9.) behavior - Ideal Behavior
10.) ventricle size - Waiting for yesterday's MRI
11.) nose wiping - Gone
12.) lip picking - Still does it
13,) lip / finger preseverating - Less, but not gone
14.) general nervousness - Better
15.) bad short term memory - Better (She recently memorized a 14 line, 4 verse
poem called "I am Responsible for Me".
16.) loses focus - Better
17.) Startled Easily - Gone

So, what looked exactly like seizures a couple of months ago turned out to be
hydrocephalus. Or maybe the pressure was actually causing small seizures as
the brain was compressed. But the bottom line is that things are getting

Thanks for all of your support and encouragement.

Jessie's Dad (R Hemi in 2008 for RE, L VP Shunt in 2010)
"Hope in One Hemisphere!"