Special Needs
Hemihypertrophy
I was just wondering if anyone else has a child with hemihypertrophy/ how old they are and your experiences with it. My daughter is 12 weeks old and was diagnosed a few weeks ago. Her legs were the same size at birth but her left leg is now smaller than her right. Her left arm is also smaller but just a little. We have just started alot of testing and specialist appointments.
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Re: Hemihypertrophy
My DS technically has hemihypertrophy but we consider it more of a leg length discrepancy since his legs are really the only areas that cause any concern. We first noticed the asymmetry at about 4 months of age but we are fairly confident he was born asymmetric we just didn't notice since he had other issues going on that were more important at the time. He has a genetic growth disorder, Russell Silver Syndrome and one of the characteristics of his disorder is limb asymmetry. Currently its not a huge difference but it is projected to continue to increase in difference (right now his right leg is almost 2cm shorter than his left leg and has a final adult projection of a 4cm difference). As a side note, not all kids with limb asymmetry have an asymmetry that continues to grow as they grow. Some of the specialists we talked with (we go to Shriner's Hospital in Lexington, KY) said that many kids will be born with say a 1.5-2cm difference and it will never get any bigger. We went to a medical convention this summer and spoke with some specialists and will probably do a limb lengthening procedure down the line to correct the difference since 4cm is pretty large. I know for DS his asymmetry is somewhat unusual because it is not the result of an overgrowth of the larger side (which is where the increased risk for Wilms tumors comes into play) but rather an undergrowth of the smaller side.
I have done a decent amount of research about both limb lengthening and Epiphysiodesis (the other surgical option for correcting limb asymmetry) so feel free to ask any questions you might have. Do they have any idea what is causing the hemihypertrophy? Hopefully you can get some answers soon! GL!