[ Post a Response | 22q Deletion Interest Board ]
Posted by Susan Gladstone
on 5/20/2008, 5:06 pm, in reply to "Re: deletion 22 q 13 syndrome"
121.217.153.168
Hi Connie
No Jonathan is not blind (although he has vitually lost the sight of one eye as it was a "lazy" eye and he would not keep patches on his good eye, no matter what we tried. He sees well though with 'one' eye. Yes he is prone to cellulitis. This is because he has lymphoedema in both legas and he has been hospitalised with cellulitis. This is a very serious condition. Dr's recommendation was to put Jonathan on daily penicillin, which he has been doing for many years and no side effect and NO MORE CELLULITIS. I hope this helps you and the very best of luck to you all. Susan
:
: Hi Susan,
: I have a 9 year old daughter with
: Phale-McDermid syndrome. She has
: been recently diagnosed as legally
: blind. Does your son have any
: vision problems? We were floored
: because she has never shown any
: indication that she has trouble
: seeing objects. We have to have more
: extensive testing and glasses made,
: but had to cut her appointment short
: due to a meltdown. She has a lot of
: autistic behaviors.
: I also wonder if your son has
: problems with cellulitis and if he
: does what can you do to help prevent
: it?
: Thanks,
: Connie
: --Previous Message--
: Hi. I have a 28 year old son with 22
: q
: 13 syndrome and I would be very
: happy for any parent to contact me
: with any queation they may have
: about this condition. We have been
: through a great deal, but the MAIN
: REASON I can help you is that you
: may be able to PREVENT certain
: things from occuring along the way
: as your child grows and develops,
: having the knowledge of what is
: possible
:
: Yours sincerely
: Susan Gladston
: Sydney Australia
:
:
:
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