CHARGE syndrome refers to a specific set of birth defects in children. CHARGE is an acronym for some of the most seen features in this syndrome.
CHARGE syndrome is sometimes ...
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my yuli almost 4 years old
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i would like to get any info... about epilapsy in charge s. and also specific details about hearing loss - is it possible that my girl does n't speak only because of conductive hearing loss? what kind of medical tests did your children had? can a hearing aid help?
one last thing- did the specialists recommanded to do spine c.t? do you have name of some well knowen specialist for charge s? lots of thanks wish i had more free time to write i hope you all feel good and happy!!! hugs Posted on 05/30/08, 04:05 pm |
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I'm sorry, I don't have any info about epilepsy in CHARGE S ... but I can tell you a bit about my son's hearing issues. We found out that he has mild loss because at age 3 he only knew about 20 words. Often myself or my husband would have to "translate" for him when he would speak and the other person couldn't understand him. He is now almost 8 and has been wearing hearing aides for school purposes for the last 4 years. They really help a lot. He is also able to use the FM unit in the classroom to help him better hear his teacher. So I would say, YES, your daughter probably doesn't speak much because she may have some hearing loss. My son has a yearly hearing screening to determine how much of his hearing is lost so that the aides can be "turned up". He IS losing his hearing little by litte, but VERY little has been lost so far. My son has had all sorts of tests done, but not a spinal CT, but he has had lots of other CT's for his nose/sinuses. He's had a renal ultrasound.
well i guess that's kind of all i can think of off hand ... ask away if you have more questions. blessings! 
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Anyone's CHARGE child in school yet? If yes, does he/she have any behavioral issues?
