Bimanual Synkinesis (mirror hand movements) Kallmann's Syndrome

[myfourkiddos]

My 17 month old has mirror hand movements.  If he is scratching his ear with left hand his right hand is identical to left hand but scratching in the air.  Left and Right hand do exactly the same thing 24/7.  He also has a very small private area and undescended testicles.  He was born with congenital hydrocephalus, but was shunted at birth and the hydro seems to be the least of his problems.  I have tried to talk to his neurologist/neurosurgeon about his hand movements etc but they keep telling me this is normal in kids.  He had his first Occupational Evaluation and the OT was in complete shock when she saw his hand movements.  She stated that in all of her years as an OT she has never seen a child move their hands like he does.  Any suggestions.  I am having a horrible time trying to get him in to be genetics tested.  Am I blowing this completely out of proportion?  Any suggestions would be appreciated.
Thank you

[Quixotic1]

NO! You are not blowing it out of proportion.  The kind of mirroring movement you are describing is not normal at any age.  I worked for 10 years as a developmental pediatrician.  You need several things:

Your son needs a complete PEDIATRIC neurological and genetic evaluation.  I also suggest you find a board-certified pediatrician less willing to say "Oh, All kids do that."

Look at your nearest university medical center that has a large pediatric service.  Often they will have an entire hospital dedicated to kids.  Make an appointment with a pediatric neurologist. That's where I would start.  You may have to travel to the evaluation, but it is worth it!

Because your son has what is called "Multiple Congenital Anomalies"  he should have had a complete genetic evaluation at birth.  This is not just running a blood chromosome test, but a "hands on" evaluation by a board-certified geneticist.  This specialty is almost always at the academic medical centers.  I would also make an appointment with them concurrently.  Depending on how far we are looking at you can decide if these visits need to be on the same trip.

You are right to be your child's best advocate.  You may have to be loud and pushy, but you clearly have a better idea of "abnormality" than your child's current doctor.

Good luck, your kiddos are lucky to have you.  Come back and let us know what's happening.  Quix

[myfourkiddos]

Thanks for your response.  After all the research I finally found a genetics doctor at Harvard /Dr. William Crowley that is going to take a look at all of Kaden's medical records and followup with genetics testing.  He also stated that bimanual synkinesis is very uncommon.

Thank you

[angel122248]

I have this condition, since birth.  I have always if anyone else has experienced it.  I am 52 years old.  It can be quite a nuisance, but you get used to it.  Both my hands do the same thing at the same time.  Even my nuerologist couldn't give me an answer as to what it is.  I was born with spina bifida occulta...but I am normal.  i have no real deficits.

[OT1999]

I am an OT working with a child having mirror hand syndrome, and has already been diagnosed.  Do you have any suggestions for things that have worked for you to decrease this abnormality? Thanks