[ Post a Response | 22q Deletion Interest Board ]
Posted by Amy I've always felt that it's better to know than to guess. That's just my bias - I know not everyone feels that way..especially when you're facing something upsetting. I think if you feel there's a need to have your older kids tested than you should. If the tests are negative, you can put those fears to rest. If they're positive, you'll know what you're dealing with. As an interesting sidebar, our middle child (out of five) has 22q deletion. Her older brother and sister participated with her in a research study on thinking and memory skills of 22q kids and their siblings. Although the older two don't have the deletion, they do have similar thinking/ memory patterns. All of my kids learn better verbally. Visual-spacial concepts (math) come harder. All I'm getting at is, 22q/ Digeorge isn't the sole definition of who our kids are (as moms we know that:) And we should listen to our gut. If we have the sense that there's something "off" with our child's behavior, learning or health - we should look for answers , and keep looking until we have them. We are their best advocates. And thanks to families, friends and even message boards like this one, we have support. We're not lone ranger moms. Let us know what you decide, or if you just want to talk more. We're all pulling for you. --Previous Message--
on 10/22/2005, 5:42 pm, in reply to "Re: Lost one baby to digeorge"
64.108.150.83
Lisa,
It sounds like you're really scared and stressed out. I hope you have someone close to talk to. If not, you have us!
Amy
: I know there are behavioral problems
: involved with the varietys of the
: deletion, and my 4 yr old is very
: stubborn. She will take fits,
: sometimes so totally out of control.
: She is very smart, though, and I
: wonder if she could have some mild
: form of this. I am just too afraid
: to have her tested. My five year old
: is in K, and her teacher has told me
: she has spells where she just stares
: into space. I have read about these
: being mild seizures in children with
: the deletion. But she is very smart,
: above average in her class. I am so
: confused! No one on either side of
: the family has these kind of
: problems.
:
: --Previous Message--
: Lisa,
: I'm so sorry for your loss. I'm not
: surprised that you're worried about
: having another child with DiGeorge.
: Most of the 22q/digeorge cases are
: not repeated in a family. Most are
: "genetic glitches" that
: occur to only one child
:
: If you're pregnant, you could have
: an amniocentesis to check for 22q
: deletion, but there's a small risk
: of miscarriage from the procedure.
: Another option - what we did- is to
: have the new baby tested by sending
: the umbilical cord blood to a lab
: after the baby's born. That way soon
: after birth, you can have the
: assurance that the baby is fine.
: I hope it all goes well.
: Amy
:
: --Previous Message--
: Hi, I have lost my 2 month old
: daughter almost 2 years ago to
: complications of digeorge, and I am
: pregnant ( I think) again, is there
: a chance to have another child
: affected by this? I have a 4 and 5
: yr old who are perfectly fine.
:
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