Need advice on ICP monitoring for 15 month old

June 20, 2002

In a message dated 6/20/2002 11:54:18 AM Eastern Daylight Time,

jjkagood@... writes:

> How is this procedure on the child?

> Recovery time?

>

Though is not a baby, cognitively she is severly delayed and very

little. She had the ICP monitoring (hydro & Chairi) done. I think I was the

one with the problem ....... I put off her having this done for quite a long

time. Till her NSG said that we needed to get it done.

has had quite a few very extensive surgeries. This procedure was a

walk in the park for her. She hates anything that is on her body - IV's,

bandages, etc and she did not mess with the bolt the entire time. She

basically slept through most of the 24 hours after.

The only problem we encountered was that she had to lay down the entire time.

When it came time to take the bolt out, the NSG resident basically unscrewed

it and pulled it out. I had a fit and told him I can't believe you are just

going to do that right here with no sedation. Welllllll, she didn't feel

anything it seemed because she didn't even flinch.

There didn't seem to be any recover time issues beside the fact that she had

had anesthesia. We went home and that was that.

That was our experience.

Tory ('s mom)

19 yrs. old, craniofacial abnormalities, midline facial cleft, hydrocephalus,

partial agenesis of the corpus collasum, growth hormone (weighs 53 lbs.) and

thyroid deficient, blind, severly delayed, choanal atresia, optic nerve

hypoplasia, artificial tear duct, 12-P chromosome deletion, sensory

integration disorder, probable malignant hyperthermia, ACM II w/30mm

herniation, basilar impression. History of 45 surgeries. (and musically

talented)

June 20, 2002

Our Peds NSG has recommended a 24 hour ICP monitoring procedure for

our son with Chiari I. He had moderate hydro, with some delay in

reaching the " normal " milestones for a regular 15 month old.

How is this procedure on the child?

Recovery time?

Thanks

Jim

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