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Was your child diagnosed with a syndrome of any kind??

My son was diagnosed with 'Branchiotorenal Syndrome' just recently. He had genetics testing done and confirmed it. It affects ears neck and kidneys...worst case it can lead to end-stage kidney disease. Theres a chance I could have it too since we are alike...but i've yet to confirm it. Also its VERY rare...

I was just wonderin was your child diagnosed with any syndrome? What and when?

Answer Question
 
YerMami24

Asked by YerMami24 at 1:54 PM on Jun. 28, 2011 in Health

Level 14 (1,431 Credits)
Answers (5)
  • What was it that brought you in to get his tested that maybe other mom's should watch for?
    maxsmom11807

    Answer by maxsmom11807 at 1:55 PM on Jun. 28, 2011

  • When he was born he had tiny pinholes in his neck that leaked a sticky fluid...(as well as i did when i was born) he had surgery to remove the branchial cleft cysts (holes in neck) but he is also hard of hearing and his ears are tiny and deformed (as mine are as well), and the doctors just wanted him to get genetics testing to see if there was anything underlying. The ears neck and kidneys all form at the same time in the womb.
    YerMami24

    Comment by YerMami24 (original poster) at 1:58 PM on Jun. 28, 2011

  • WOW, so he is better now?
    yesmaam

    Answer by yesmaam at 1:58 PM on Jun. 28, 2011

  • well they did an ultrasound on his kidneys and they were fine but he has a 'thick' bladder. I've yet to find out what that means. But it doesn't bother him.
    YerMami24

    Comment by YerMami24 (original poster) at 2:00 PM on Jun. 28, 2011

  • Yes and it saddens me daily. From the looks of her my daughter looks like an average 13 yr old, maybe smaller in build! Butshe was born with fatty tissue on her spinal cord, causing her bladder and kidneys to be smaller. So she is incontinent and has infections all the time. When she was born she was the 6th or 7th person to have this thing, its some sort of spina bifida, but its some long name i have forgotten to spell! Its a daily struggle, especially when shes in pain and asks me why this is happening to her. I pray that your son does well in the future.
    krisnroc

    Answer by krisnroc at 4:47 PM on Jun. 28, 2011

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