[ Post a Response | 22q Deletion Interest Board ]
Posted by Connie
on 5/20/2008, 7:55 pm, in reply to "Re: deletion 22 q 13 syndrome"
64.12.117.195
Susan,
Thanks for your help. I hope that we get good news on her other eye. It would be a big relief. I just hope she cooperates and doesn't have another melt down. We have been lucky so far and no cellulitis, but she is still very young (9) so we will definitely keep our eyes open. We are going to the conference this summer and hope to pick a few more brains about some autistic behaviors.
How did your son do in school? I am always second guessing myself with her education. I would love for her to be able to read and write someday, but I don't know if that is a realistic goal. I would hate myself if I have pushed her beyond reason. I guess as parents we will always second guess ourselves even with our childred without 22q.
Thanks for your input.
Take care,
Connie
--Previous Message--
: 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
:
:
:
:
:
Message Thread:
« Back to thread