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February 2012 Moms
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Generic counselor update

preggersINschool25preggersINschool25 member
in February 2012 Moms
Grant's appointment today was a bust. Basically they don't know if his duplication is the cause of his problems or if it is a non problematic duplication. They are going to test my husband and I for the duplication. If we have it then they will think Grant's duplication is not significant and will do a genome sequencing which is more precise compared to the test he had done.

SO waiting continues until our next appointment in May!


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Re: Generic counselor update

  • Cathyr1003Cathyr1003 member
    Sorry the appt didnt go as you hoped.  I cant imagine how frustrating that must be. Hopefully your next appt in May will give you answers.
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  • ssimon621ssimon621 member

    Preggers I saw this news report and immediately thought about you.  I hope this isn't what is wrong with Grant and hope he wouldn't need a surgery, but maybe his condition is really rare like this little girl.  Maybe you can ask his pedi or research more about the condition.  In the report the parents said that the little girl wasn't using her left hand and that is when the tests started.  I know you said Grant wasn't grabbing things so that's why I thought of you.

    https://www.cbsnews.com/8301-204_162-57569708/toddler-gets-non-invasive-brain-surgery-with-help-of-medical-crazy-glue/

    I swear I'm not trying to freak you out!!  I just thought it might be something to look into.

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  • preggersINschool25preggersINschool25 member
    Ssimon I hope if he had that they would have caught it on his MRI! I tried looking up if an MRI catches that and from what I could tell it does.

    I couldn't get them to speculate if they thought this duplication was the cause of his problems or not. Maybe I'm reading too far into this but the next appointment is scheduled with the counselor and the primary genetisis. Makes me think that the duplication is our answer.


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  • ssimon621ssimon621 member

    imagepreggersINschool25:
    Ssimon I hope if he had that they would have caught it on his MRI! I tried looking up if an MRI catches that and from what I could tell it does. I couldn't get them to speculate if they thought this duplication was the cause of his problems or not. Maybe I'm reading too far into this but the next appointment is scheduled with the counselor and the primary genetisis. Makes me think that the duplication is our answer.

    Ok, I thought he had a MRI but I couldn't remember.  I know you guys have gone through quite a bit of testing.  I really hope you get answers soon.  And we want to see some new pictures of Grant!

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  • Jeanine88Jeanine88 member
    That is so frustrating! I'm sorry. 
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  • jldubb0626jldubb0626 member
    I'm so sorry you didn't get anymore answers. 
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  • preggersINschool25preggersINschool25 member
    Bears thank you for that article.

    I'm going to call on Monday and see if we can do the sequencing at the same time as the test they want to run on us. I was told the sequencing takes 4 months and they were only going to do it if our results came up positive. That means we wouldn't have answers til September or October... that's a ridiculous long time.


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