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Old 05-19-2013, 10:15 AM   #16
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ssand23
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Join Date: May 2009
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Re: How would you feel if your child's diagnosis was removed?

Quote:
Originally Posted by UnderTheStars View Post
Every time they do a test to diagnose him and it comes back negative, I feel like I should be happy like everyone else is but instead I'm just....frustrated. The geneticists were almost positive my son had DiGeorge/22q Deletion Syndrome (as was I) and everything I read about it I found myself nodding along to. Well, he was cleared by genetics as not having it and I was honestly disappointed. I actually feel guilty about it, but I just need the closure. I need to know what we're dealing with, I need to know if he has a broad genetic thing that he can pass to his kids, I want him to be able to tell people "I have XYZ" when they ask, instead of saying "well I struggle with this, and this is hard, and I had surgery for this...etc...etc...".

If he HAD a diagnosis that seemed off or didn't seem like it "fit", I would be disappointed but glad to be on a new path to the correct diagnosis. If he had diagnosis that seemed to fit and then it were taken away and I was left in nowhereland? Frustrating would be an understatement. I'm sorry you are there right now.
This was us, too in "nowhereland"! The drs really thought DeGeorge/22q and when genetic testing came back normal, it threw a monkey wrench in things since now no one has any clue but agrees something isn't right and is getting worse. My son has the facial palsy that has been progressively getting worse. Genetics declared it a birth defect since it didn't pop up as a genetic issue so that opened the door for a Special Child Health Nurse but still doesn't explain what is going on and why it's getting worse. I was trying to make myself okay with just going on "birth defect" but now that it's suddenly changing, I'm not okay with not knowing what's going on.

His face looked typical at birth but around 2 1/2 years, the right side of his mouth would freeze shut when he smiles. It remained about the same but now at 3 years, when he smiles, his right eye shuts on it's own, too, like the mouth does and that is new. It looks like he's winking but he's not and can't control it. What's confused the doctors is that most kids with that facial palsy, have it from birth and it stays the same and he didn't have any issue at birth or as a baby. Genetics said everything is fine from their end. We have been seeing an ENT as he needs ear tubes and they want an MRI of his brain, which I agree with that it needs doing.
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