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New here..Son diagnose with Hemihyperplasia...


Forum: Children with Special Needs

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  #1  
November 2nd, 2011, 08:30 AM
LisaMarie!'s Avatar Platinum Supermommy
Join Date: Jun 2007
Location: San Antonio, TX
Posts: 9,710
Hi Ladies, don't know if I really belong here but I decided to introduce myself and my boys since I've been lurking on and off since my son was diagnose with it. Iím married for 5 years and have 2 wonderful boys.. Aiden 3.5 and Preston 2 year old.

Sorry this might get long...

This all started when my 2 year old was about 9 months old. I noticed his legs were different length but it wasn't a lot so I didn't worry about it. I kept and eye on it and noticed it was getting worse. At his one year check up, I told his doctor about it. They check his hips and had us go get x-rays done on his legs. We determine that his left leg was a little shorter. He also heard a heart murmur. At this time his doctor referred us our to a heart specialist and an orthopedic doctor.


The heart specialist hooked him up to a machine and saw a little spike so then did an ultrasound but did not see anything. He said he doesnít see a reason for us to come back since the ultrasound is more reliable then the other machine.

We then went to our orthopedic doctor and I took the x-rays with me so he had them to look at. Since they were just done we didnít get more done that day. But he did explain what the plan was going to be. We were going to come back in 3 months and monitor the growth of his leg. We went back 3 months later and the leg went from being about .5 cm to almost 3cm different. We then got a shoe lift added to his shoe and we are currently on his second shoe lift. He also had us do an ultrasound on his abdomen and everything turned out fine. He did explain by the looks of his leg not able to keep up with his other one that he will need surgery. He said that anything between 1.5cm-3cm they can stunt the growth of the longer leg and anything 3cm and greater then they would have to do leg lengthening surgery. He is now at 3cm and still under 2 years old so he does believe that he will need the lengthening surgery. I believe it has gotten worse but we donít go back until Jan for his next appointment. He is walking great with the shoe lift.

At his next check with his pedi doctor, he charted his growth and his circumstance of his head and thought his head was not growing. He then referred us out to a Geneticist doctor. When we finally were about to get seen by him, which took months, I explained everything going on with him about the leg and his growth. They called to get a copy of his current x-rays from his orthopedic doctor. They doctor then diagnose him with Hemihpyerplasia. Preston had blood work and another ultrasound of his abdomen and everything turned out normal. We went back 3 months later for his next check upÖ The doctor looked at his leg again and talked about his growth, which he wasnít growing much. I guess from his research from the last blood work he wrote down on his notes that he might be short stature. He decided to have him referred out to an Endocrinologist doctor and did more blood work testing his chromosome. He thinks we might need to put him on growth hormones but donít want to do anything until the Endocrinologist takes a look at him. He also said her hear a heart murmur too. I so caught up in things from the short stature and endocrinologist stuff that I forgot to mention that his other doctor heard one too a year ago and about seeing the heart specialist. Iíll have to try to remember to bring this up in Feb when we go back.

This is now where we are at todayÖ 1.5 years later He is diagnosed with Hemihyperplasia, seeing 3 specialists plus his regular doctor. We have our first appointment with the Endocrinologist in Dec 6th, Orthopedics end of Jan, and the Geneticist in Feb 13.

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  #2  
November 2nd, 2011, 09:44 AM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150
You guys certainly have a lot going on!

First of all, you certainly belong here. This is a great board for support when you're dealing with things (like you are) that most moms will never have to face.

Does the Hemihyperplasia only affect his legs? (I read that there can be organ and brain involvement). Does he get therapy or has he adapted well to the difference in leg lengths?

My little girl is Carrie. She is undiagnosed and her specialists believe that she will never be diagnosed. She just turned 4 years old and has been through the ringer on specialists. She has seen (and most continues to see) a neurologist, dermatologist, cardiologist (like your son, has a heart murmur), ophthalmologist, vascular specialist, developmental pediatrician, gastroenterologist, epiliptologist, audiologist, regular pediatrician, ABA therapist, speech therapist, physical therapist, and occupational therapist. (we've seen multiple of each specialist, because we've lived in 5 states since her birth)

There is no one who understands that kind of stress like the ladies here.
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  #3  
November 2nd, 2011, 10:37 AM
LisaMarie!'s Avatar Platinum Supermommy
Join Date: Jun 2007
Location: San Antonio, TX
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Thanks... It can affect his organs and any body part. Right now it has only affected his leg and I do think it is also affecting his face too but it isn't that noticeable. Everyone is different on how it affect them. Thankfully the only thing we know for sure that is wrong is his leg and will need surgery. I guess we might know more in a few months once we get through all these appointments.
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  #4  
November 6th, 2011, 04:29 PM
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Location: OH-IO
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Of course you belong here! Welcome! I think seeing an endo is a very good idea. My DD was dx'ed with growth hormone defiency as well as her other issues. She sees an endo every 2-3 mths. I'm so glad his scans are clear.
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  #5  
November 7th, 2011, 11:19 AM
mamma_anna's Avatar Mega Super Mommy
Join Date: Feb 2011
Posts: 1,953
Hi LisaMarie! Welcome to the board. You'll certainly fit right in here. Hope we can be of some support.

I'm Anna. I have 4 daughters and my little one Ellie has cerebral palsy, chronic lung disease and a few other issues. We're definitely not strangers to juggling all the specialists and therapies.

Looking forward to getting to know you and your boys.
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