- cranio-facial team visit

August 20, 2002

Hi all -

Interesting update on . About 2 years ago, at her annual

genetics checkup, the visit summary lists the 3-4 things they wanted

us to do and one said " cranio-facial team visit by age 5-6. " I

forgot that.

At the convention, Dr. H again commented that 's voice is too

hypernasal (despite the extreme improvement in articulation due to

speech therapy). Judy Gardner from Easter Seals told me to go back to

a good ENT and demand better testing.

So off we went to the head of the Head and Neck Surgery unit at

UCLA. Saw her yesterday, and she agrees that may have a

mechanical problem versus just weak muscles - allowing air to escape,

hence the hypernasality.

So she books in for team visit to the " cranial-facial team "

atUCLA. This Wednesday. WOW, talk about fast. She said that they

put in a room, and all these different specialists move

around from patient to patient-- instead of the child moving. ENT,

surgeon, speech therapist, lab technicians, etc. They want to

examine her entire " cranial/jaw/facial " .

I have NO idea what this entails but will email you tomorrow. She

did say that although I had complete velopharyngeal insufficiency

(which caused my hypernasality as a child which was surgically

corrected at age 17), she didn't think 's was that- although

it may be a gap " back there " which might have to be surgically

corrected.

And my husband is working in Connecticut as usual. I hate always

doing this stuff on my own. I feel like I need a backup to help me

listen (should just audiotape it!).

So, I will keep you all posted. Although I hate the thought of

surgery, I almost wish for that instead of more speech therapy, which

hasn't seemed to make any improvement in the nasality (but removes

her from class all the time....)

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