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angelmans syndrome

EMP0301EMP0301
in Special Needs

does anyone here have experience with it?

I posted here once before.  Long story short I have a 2.5 yr old delayed (in every area) daughter.  She is so happy all the time and will give the biggest smile ear to ear.  One of the signs of angelmans is a happy demeanor and excessive smiling.  It kills me to know that they are testing my daughter for a genetic disorder because she is "overly happy" and delayed.  They are also running a panel for fragile x and triple x.  

 It would be great to hear any advice if anyone is dealing with angelmans because that is where she is seeming to fit right now and I have to wait 2-4 weeks for results.  It could end up as nothing but I like to prepare myself.

 thank you for reading.  

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Re: angelmans syndrome

  • DougsBrideOct04DougsBrideOct04
    My daughter was tested for angelmans 2 years ago.  She has a seizure disorder that sometimes goes along with it and she is delayed as well.  It turned out that she does not have it but I can sympathize with you about the wait and everything you are going through.  I remember her doctor saying she was "too happy" and that was what made him think angelmans, turns out she's just a happy girl!  I wish you the best, this board has been very helpful for me.
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  • EmAreEmAre member
    My daughter was tested for Williams Syndrome due to being overly happy and social, among other things. She was found to not have WS, but does have another genetic disorder.

    The wait was unbearable and I found myself wondering when we still thought it was WS if all of her beautiful personality was just the result of a disorder. I found myself questioning all of the things that I had previously loved about my daughter because I thought they were only a result of an accident during conception. But during that wait, I came to terms with the possible diagnosis. If your daughter does have Angelmans, it is as much of a part of her as her eye color and hair color. It is part of who makes her who she is and if that makes her extra happy, than so be it!

    I wish you the best of luck while waiting for your results. Whatever the answer is, just know it doesn't change your little girl. It simply provides a label to ensure she gets the most services possible.
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  • mopdop2000mopdop2000

    I have no experience with angelmans syndrome, however I did have to wait for a fragile x genetics test on our adoped son. It was meant to take 2-4 weeks, but actually took 3 months. I spent that time familiarizing myself with fragile x, wondering what life would be like if the test came back positive,angry that we were even on this journey etc. The day the test came back positive, I felt more ready to accept the news than if I hadn't had the previous few months to worry, stress etc.

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  • EMP0301EMP0301

    Thank you, everyone for your wonderful insight. Do I want a diagnosis?  YES, it would make the future a little more clear.  Is it hard playing the waiting game? YES. Will it change the way I look at or treat my child? NO.

    As one of you said- if she is diagnosed it is as much her as her hair and eye color.  My daughter is a beautiful person inside and out and I treasure that.  We have a large supportive group of family and friends and I couldn't ask for much more. 

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  • MrsBalletStar05MrsBalletStar05 member
    My son was tested for Fragile X and had a chromosomal array done.  We were somewhat concerned with Angelman's as well.  As far as we know now, he doesn't have either of these conditions or any other known genetic conditions.  He does have a lot of similar characteristics to these syndromes though.  He has a very happy demeanor, motor delay, speech delay, social issues and even *light* features - blonde hair, blue eyes even though his father is black.  It didn't take too long to get the results back - just a few weeks - and when we found NOTHING from these tests I cried and cried.  No one understood.  I wanted answers and we got none.  Now we are waiting to get into the developmental pediatrician group here which should be (much) later this year.  I am part of a Fragile X support group on FB though.  Even though that is not what he has, he has so many common traits with these kids and it's really helpful to talk with other special need parents.
    Adrian 7.6.07 - ADHD, Disruptive Behavior Disorder, Learning Disability-NOS
    Cam 6.6.10 - Autism, Global Developmental Delay, Mixed Receptive/Expressive Communication Disorder
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