[ Post a Response | 22q Deletion Interest Board ]
Posted by Andrea Link: http://mydigeorgesyndrome.com
on 12/12/2005, 8:26 pm, in reply to "At what age was your child diagnosed?"
65.204.67.209
Whitney,
My son Cameron was not diagnosed until he was 4 years old and after he had open heart surgery for a VSD. We were told before we left the hospital when he was born he had a small heart murmer. After seeing a pediatrician we were reassured he would most likely out grow this as he got older. When he was 4 years old we changed his doctor and after a complete exam were told his heart murmer was significant enough to see a cardiologist. Within a 8 month time period we had discovered his heart murmer had developed into a leaking valve. He had open heart surgery that same year at Cleveland Clinic. When we came back home and visited our cardiologist, she suspected Cameron may have VCFS or Digeorge. After testing him it was proven correct. So you see we were 4 years old and already had one surgery. He is doing wonderful, but now that I know he has this symtoms he does have some of the classic symtoms. Folded ears, small stature, small teeth, and he didnt' talk until he was two years old. Our doctor just kept telling us he had nothing to say and would talk when he was ready. This is all classic of 22q deletion. Have him checked it couldn't hurt anything. Knowing the symptoms will give you the knowledge to do everything you can to help him.
--Previous Message--
: Hello everyone. We have a 3 year old
: son and are revisiting the idea of
: having him tested for a 22q
: deletion. He does not have any
: cardiac or palate difficulties that
: we know of (unless they are minor
: and have never shown any sort of
: presentation.) He does have several
: of the characteristic facial
: features (asymetric crying facies,
: broad bridge to his nose, epicanthal
: folds, small teeth, hooded eyelids,
: red/blue circles under his eyes.) He
: had bad GERD as a baby and has
: always been on the small side in
: height and weight. He also showed a
: developmental delay in gross motor
: skills and language development,
: although he has caught up on those
: now and only seems to struggle with
: some fine motor skills. Also, we
: are starting to see some signs of
: social and learning difficulties
: (attention difficulties, fixation on
: one object/topic, severe separation
: anxiety even though he's been in day
: care since 6 months old, sensory
: integration issues etc.) All the
: stories that I read are of children
: who were diagnosed in infancy
: (usually because of cardiac
: problems) and I guess I'd like to
: know if there have been children
: diagnosed later in life.
: Wow! Sorry for the long message.
: Thanks in advance for your help!
:
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