SLD-FORUM Velo Cardio Facial Syndrome

Would be interested to hear from any colleagues who may have or know of

Simon,

I would be interested to know what you mean by a partially open tracheostomy
in terms of his safety requirements. My understanding of tracheostomy is
that there is often a significant risk of sudden onset blockage (by mucous)
and if so wouldn't the safety issues be a factor in the amount of learning
support assistance she needs?

Bev

----- Original Message -----
From: "simonburdis" <simonburdis at tinyonline.co.uk>
To: <sld-forum at ngfl.gov.uk>
Sent: Monday, 3 September 2001 21:44
Subject: SLD-FORUM Velo Cardio Facial Syndrome

> Would be interested to hear from any colleagues who may have or know of
> a child with Velo-Cardio-Facial-Syndrome (VCFS).
>
> Also known as Shprintzen Syndrome, DiGeorge Sequence and increasingly as
> 22q11 Syndrome, referring to the partial deletion of chromosome 22. It
> is one of the most common genetic disorders, but seems to be little
> known here. There is a good American website. VCFS is characterised by
> cleft palate, heart abnormalities, learning disabilites and over 180
> other clinical findings and disabling conditions in various
> combinations.
>
> I have a child moving into Y2 this term working a year behind her
> chronological age: Severe problems with short term memory. Has a
> Tracheostomy still partially open which is a concern to class teachers
> with less than an hour Learning Support Assistant time per day. Also,
> she becomes exhausted easily and needs to be pushed in a buggy to
> participate in PE on the school field, visits to park next to the
> school, etc. I am gathering evidence in support of more LSA time.
> Grateful for any information or suggestions.
> Thanks
> Simon Burdis
> SENCO Ambleside
> Cumbria