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Hemihypertrophy

 
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amother






Post  Thu, Feb 14 2013, 12:05 pm
Is anyone familiar with this term? Our child was just diagnosed and we are not sure what this really means for the future. It seems to be a mild case as it was not obvious for the first few years of her life.
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lkwdlady









  


Post  Thu, Feb 14 2013, 5:37 pm
This is a condition where one side of the body is slightly larger than the other side. It can affect internal organs as well.

Last edited by lkwdlady on Thu, Feb 14 2013, 11:52 pm; edited 1 time in total
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amother






Post  Thu, Feb 14 2013, 7:51 pm
I've heard that Nordstrom will sell a left and right shoe of different sizes for the price of one pair.
Make sure that you check regularly for scoliosis.
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manhattanmom









  


Post  Thu, Feb 14 2013, 8:04 pm
can you say a little bit about what it means?--maybe that way you'll get more responses--someone may say--hey, my neighbor's kid has that--let me connect you to her...instead of people who are not familiar with medical terminology, passing your post by.
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Rubber Ducky









  


Post  Thu, Feb 14 2013, 8:12 pm
amother wrote:
I've heard that Nordstrom will sell a left and right shoe of different sizes for the price of one pair.

Yes, that's true! My machateiniste wears 2 different shoe sizes due to childhood polio and always buys her shoes at Nordstrom's.
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amother






Post  Thu, Feb 14 2013, 8:13 pm
Do you know for sure if it's isolated- did they rule out Beckwith-Wiedemann syndrome? I work with a little girl who has BWS. The main medical concern is the increased risk of certain tumors. The girl I know has scans done monthly to monitor and detect any growths.

I'm assuming your geneticist has referred you to an orthopedist and an oncologist to discuss specific concerns. If not, please ask for a referral.
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amother






Post  Fri, Feb 15 2013, 12:00 am
amother wrote:
Do you know for sure if it's isolated- did they rule out Beckwith-Wiedemann syndrome? I work with a little girl who has BWS. The main medical concern is the increased risk of certain tumors. The girl I know has scans done monthly to monitor and detect any growths.

I'm assuming your geneticist has referred you to an orthopedist and an oncologist to discuss specific concerns. If not, please ask for a referral.


no - it is not BWS. (Nothing was indicated in chromosome 11) There is a high risk of abdominal tumors until age 8 but we need to check every 3 months (not once a month). Since this appears to be mild and there are no tumors B"H we are not sure what that means once our child becomes an adult. The body part that is slightly larger is hardly noticeable and all blood work and ultra sounds have been fine. But yet, our child has hemihypertrophy.
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amother




Periwinkle


Post  Tue, Jul 11 2017, 9:34 pm
I know this is an old thread, but I know someone who was probably diagnosed with this. Anyone have any more information. Amother from 2013, how's your child now?
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amother




Slateblue


Post  Tue, Jul 11 2017, 10:48 pm
amother wrote:
I know this is an old thread, but I know someone who was probably diagnosed with this. Anyone have any more information. Amother from 2013, how's your child now?


totally fine. It seems that it is a case of 'isolated' hemihypertrophy where it involves only one part of the body. According to the dr. studies show that if it is isolated in a small part then we don't have to worry anymore.
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siyata dishmaya









  


Post  Mon, Jul 17 2017, 9:21 pm
Hi,
I am a mother who was told that my child has hemihypertrophy. I am wondering how you got an official diagnosis. We only got into a geneticist who is giving us an appointment months away. The confusion and vagueness is very difficult. How did you know if it was truly hemihypertrophy?
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amother




Slateblue


Post  Mon, Jul 17 2017, 9:48 pm
siyata dishmaya wrote:
Hi,
I am a mother who was told that my child has hemihypertrophy. I am wondering how you got an official diagnosis. We only got into a geneticist who is giving us an appointment months away. The confusion and vagueness is very difficult. How did you know if it was truly hemihypertrophy?


The geneticist will determine if your child has hemihypertrophy. How old is your child? Why do you think your child has this?

If you tell me where you live, perhaps I can help you with a geneticist who can see you sooner.
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siyata dishmaya









  


Post  Tue, Jul 18 2017, 11:30 am
I would love that! how can we be in touch?
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siyata dishmaya









  


Post  Wed, Aug 09 2017, 12:55 pm
Besides for hemihypertrophy, we were told my son has Beckwith wiedemann. Did that come up?
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siyata dishmaya









  


Post  Fri, Aug 11 2017, 12:03 am
I would love to contact the original poster. Can you please PM me?
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