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smdl
I love Gary too..on a plate!
Member since 5/06 32461 total posts
Name: me
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Wish us luck for today!!!! UPDATE
UPDATE: DH, me and DS went to the Dr. They did a physical eval of EJ. EJ has no physical signs of autism whatsoever. Apparently some kids do. I did not know that. Like skin lesions, etc..
In short, DS will take a blood test and they will do genetic testing on it. It usually only sees about 25% max of any possible issues. The genetic counselor had told me 4 weeks. Well, the Dr. said 6-8 weeks to get the results. The test is becoming very "popular" and it's in high demand.
IF DS tests positive, then DH and I would be tested also. If we test positive, then our chance of having another child with autism is 50/50. That's pretty high. The Dr. said that we could have a gene/chromosone issue, either DH or me, and be very healthy. It just did not get triggered and plenty of people have issues they don't know about. So that would take another 6-8 weeks for our results.
IF DS tests negative, we (DS) would have to go to Boston (or they would send tests to Boston... not sure anymore, the guy lost me a few times). It's a very in depth test. EVEN more than the micro array test done with the bloodtest. Most likely we need pre-approval from our insurance (no way of knowing how long that would take just for the pre-approval). I did not even bother to ask how it would take to get the results. That test only covers another 10% to catch anything genetic related.
DH and I left a bit defeated. We are going to do the bloodtest for DS. Then see how it goes depending on his results. DH and I really thought that if we are going to have another child, it would be this year. Next year, my risks will be even higher for the risks of "general" chromosone issues. So our chance for down synd. would increase. I would not just have to worry about autism. It's a bit draining just thinking about it. We think it might take about 6 months to do all the testing. Way longer than we thought we would have started TTC for #2.Anyway, lots of food for thoughts.
Just so people don't MISUNDERSTAND. This is NOT a test that you just ask your PED to do if you feel your child is behind on milestones. You probably can. But people who do those tests already have a child diagnosed by a Developmental Dr. or a psychologist.
I just wanted to share our journey, DH, EJ and me together during his therapies and trying to "regain" some normalcy in our life. Whether it means we only have DS or not. We are trying to make sure that we don't divert our attention from EJ if we can "avoid" having a child that would require special needs too like our dear son. We want to make sure EJ does not "suffer" from the decision of having another child if that child needed as much if not more therapies than DS has already. Not that we can guarantee anything in life (obviously!!!!).
****************************** We are seeing a medical geneticist today for DS. The Dr. only flies to the US twice a month from Colombia (the Country!). Luckily DH is a great actor and BEGGED for him to see us before the next available appt which was in the Fall.
This visit might very well determine if EJ will be a brother or not.
Message edited 7/10/2009 6:31:59 PM.
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Posted 7/10/09 8:36 AM |
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jmf423
:)
Member since 5/05 6372 total posts
Name:
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Re: Wish us luck for today!!!!
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Posted 7/10/09 8:42 AM |
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Porrruss
Nya nya nya
Member since 5/05 11618 total posts
Name: Amy
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Re: Wish us luck for today!!!!
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Posted 7/10/09 8:47 AM |
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bayla
Love my two kiddos :)
Member since 8/06 7178 total posts
Name:
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Re: Wish us luck for today!!!!
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Posted 7/10/09 8:47 AM |
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MrsPornStar
Partners in crime
Member since 10/05 14656 total posts
Name: Mama
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Re: Wish us luck for today!!!!
Good luck today, Sophie!
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Posted 7/10/09 8:53 AM |
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lvdolphins
My Loves!
Member since 5/05 46292 total posts
Name:
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Re: Wish us luck for today!!!!
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Posted 7/10/09 8:55 AM |
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msbree825
whole lotta cute...
Member since 1/08 1242 total posts
Name:
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Re: Wish us luck for today!!!!
good luck!
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Posted 7/10/09 9:41 AM |
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Ladybug3
Two is better than one!!!
Member since 12/07 4474 total posts
Name:
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Re: Wish us luck for today!!!!
good luck!
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Posted 7/10/09 9:41 AM |
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julz33
i run for bacon
Member since 5/05 20584 total posts
Name: julz
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Re: Wish us luck for today!!!!
Good luck!
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Posted 7/10/09 9:43 AM |
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Blissful
Ultimate Expression of LOVE
Member since 6/08 4985 total posts
Name: Maria
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Re: Wish us luck for today!!!!
V
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Posted 7/10/09 9:44 AM |
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dm24angel
Happiness
Member since 5/05 34581 total posts
Name: Donna
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Re: Wish us luck for today!!!!
GOOD LUCK!!!!!!!!!!!! Let us know how it goes!
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Posted 7/10/09 10:04 AM |
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smdl
I love Gary too..on a plate!
Member since 5/06 32461 total posts
Name: me
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Re: Wish us luck for today!!!!
Posted by dm24angel
GOOD LUCK!!!!!!!!!!!! Let us know how it goes!
I will!
If everything goes well and my OWN body willing... we would love to announe that EJ will be a big brother by next year.
If it does not go well, you will see a lot of baby gear/toys for sell soon and a lot less junk in my house. Not that I would mind the junk for a while longer if that means another baby!
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Posted 7/10/09 10:09 AM |
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pickles16
Real Estate Professional
Member since 11/07 17227 total posts
Name: Jen
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Re: Wish us luck for today!!!!
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Posted 7/10/09 10:12 AM |
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twinkletoes807
Mommy's Girls! ♥
Member since 11/07 10116 total posts
Name: Gabi
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Re: Wish us luck for today!!!!
How exciting!! Good luck!!
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Posted 7/10/09 10:13 AM |
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Deedlebugs
Blessed
Member since 12/05 10281 total posts
Name: Kiki
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Re: Wish us luck for today!!!!
Best of luck! I look forward to an update.
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Posted 7/10/09 10:42 AM |
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headoverheels
s'il vous plaît
Member since 6/07 42079 total posts
Name: LB
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Re: Wish us luck for today!!!!
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Posted 7/10/09 10:57 AM |
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chikita315
Love
Member since 8/06 7945 total posts
Name: M-lo
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Re: Wish us luck for today!!!!
Good Luck!!
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Posted 7/10/09 10:59 AM |
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LoveBeingMrsT
Love my Boys!
Member since 12/05 4648 total posts
Name:
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Re: Wish us luck for today!!!!
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Posted 7/10/09 11:01 AM |
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smdl
I love Gary too..on a plate!
Member since 5/06 32461 total posts
Name: me
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Re: Wish us luck for today!!!! UPDATE
update on top
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Posted 7/10/09 6:32 PM |
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twinkletoes807
Mommy's Girls! ♥
Member since 11/07 10116 total posts
Name: Gabi
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Re: Wish us luck for today!!!! UPDATE
I hope that all of the tests come back negative! Good luck to you, DS and DH!!
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Posted 7/10/09 6:35 PM |
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browneyedgirl
family is all that matters
Member since 6/06 6513 total posts
Name: browneyes
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Re: Wish us luck for today!!!! UPDATE
pardon my ignorance, but what do you mean by testing positive? positive for autism? there's a gene for that? or is it just a general chromosomal issue? i just want to understand it better because i've never heard of it before!
best of luck to you guys...i hope you get the answers you are looking for!
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Posted 7/10/09 6:40 PM |
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smdl
I love Gary too..on a plate!
Member since 5/06 32461 total posts
Name: me
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Re: Wish us luck for today!!!! UPDATE
Posted by browneyedgirl
pardon my ignorance, but what do you mean by testing positive?
positive for autism? YES
there's a gene for that? YES
or is it just a general chromosomal issue? YES, it can be a chromosone issue too.
We had an amnio during my PG which you would think detects chromosonal issues. Apparently it's really ONLY a BASIC chromosone test.
From what the Dr. said it's usually a gene but it may not be just one. It's not that easy to pin point the issue because it can be a combination of factors/issues.
Message edited 7/10/2009 6:46:09 PM.
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Posted 7/10/09 6:45 PM |
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lbelle821
Arghhhhh
Member since 2/06 5285 total posts
Name: Lisa
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Re: Wish us luck for today!!!! UPDATE
I'm glad you posted this because a few weeks ago I was actually going to FM you to ask you if they ever ran any bloodwork on your DS for chromosonal testing.
We saw the neurologist a few weeks ago to discuss his delays. While he did rule out anything on the spectrum for us he still sent us for a battery of bloodtests to see if there are any chromosonal issues going on. I didn't have an amnio when I was pg. We did the tests two weeks ago and are still waiting (he told us it would be around a month). They did a basic CBC, lead test, chromonal micro array, and fragile-x. So far all I know is lead came back ok.
What the doctor told me that these particular tests really only have a 5% chance of identifying any underlying genetic issues that may have caused my sons delays. I'm not sure if maybe because he already doesn't think it is autism is why the odds went down??? He basically told me that most likely it will go unexplained.
But he did mention that it was important for planning another child although I don't think this has altered our decision to have another....but I do know our situations are very different and I could totally understand why this feels so completely unresolved for you.
Once i get all of my son's results I'm very eager to understand what is was they tested for specifically. And then see what they say in terms of having another.
Thanks for sharing
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Posted 7/10/09 7:26 PM |
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browneyedgirl
family is all that matters
Member since 6/06 6513 total posts
Name: browneyes
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Re: Wish us luck for today!!!! UPDATE
Posted by smdl
Posted by browneyedgirl
pardon my ignorance, but what do you mean by testing positive?
positive for autism? YES
there's a gene for that? YES
or is it just a general chromosomal issue? YES, it can be a chromosone issue too.
We had an amnio during my PG which you would think detects chromosonal issues. Apparently it's really ONLY a BASIC chromosone test.
From what the Dr. said it's usually a gene but it may not be just one. It's not that easy to pin point the issue because it can be a combination of factors/issues.
wow. thanks for the information--i had absolutely no idea there's a gene for that.
i wonder...if there's a gene for that, why don't they test babies at birth? or for parents who think it comes from environment/vaccines/etc, it wouldn't be chromosomal right?
again, good luck with everything!
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Posted 7/10/09 8:12 PM |
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smdl
I love Gary too..on a plate!
Member since 5/06 32461 total posts
Name: me
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Re: Wish us luck for today!!!! UPDATE
Posted by browneyedgirl
Posted by smdl
Posted by browneyedgirl
pardon my ignorance, but what do you mean by testing positive?
positive for autism? YES
there's a gene for that? YES
or is it just a general chromosomal issue? YES, it can be a chromosone issue too.
We had an amnio during my PG which you would think detects chromosonal issues. Apparently it's really ONLY a BASIC chromosone test.
From what the Dr. said it's usually a gene but it may not be just one. It's not that easy to pin point the issue because it can be a combination of factors/issues.
wow. thanks for the information--i had absolutely no idea there's a gene for that.
i wonder...if there's a gene for that, why don't they test babies at birth? or for parents who think it comes from environment/vaccines/etc, it wouldn't be chromosomal right?
again, good luck with everything!
You virtually would have to test the entire population. That's not really feasable. If DH and I get tested and test positive, that does not mean we have autism. According to the Dr. MANY MANY people have "Some sort" or genetic/chromosone issues that NEVER get triggered.
In addition, there are enviromental triggers not just genetics. Viruses have been known to trigger autism. I personally thing this is a virus case for our son. I won't go too much in detail but DH and I both know when DS started to lose skills and get behind on milestones. It's not just 1 gene or 1 chromosone. It's not just 1 virus, etc.. It's a bunch of triggers that put together triggers autism. Research is showing right now the discovery of a lack of a gene or incomplete gene. But there is so much to find out. It's all over the place. They don't know how it's caused and even less how it's triggered.
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Posted 7/10/09 8:47 PM |
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