Dutch Kentucky Syndome

My child has a rare disorder called Dutch Kentucky. I have it too. His mouth opening is small. Dutch Kentucky involves the shortening of the tendons of the feet, hands, and jaw, and shallow hip sockets. I am looking for anyone that I can talk to about it or share some experience….also looking for treatments.

There are several members in my husband’s family with Dutch Kentucky syndrome. Each of them is affected differently. They have this disorder in the hands and two wore cast on our feet. One of them had tendon surgery on wrists. This did help some. We are also trying to find out more about the mouth. He is able to eat by pushing his food into his mouth, but brushing his teeth is a bit difficult. His middle sister has three children and the oldest is affected in the hands, feet, and in the mouth.

I am a mother with 3 children and my eldest has dutch kentucky syndrome. My husband also has it as well as his mother and three of his cousins. my daughter has a mild form as her hands are fine she had her first surgery at 5 months old or so. recently she has had botox injections in her feet and it worked wonders. The doctor that we deal with is one of the leading doctors in this disese today, the previous doctor has retired and he dealt with all family members. I am willing to offer any help to other people with the disease.

I had to change my user name due to not comming here enough. I am Zephara with a new user name.
As I stated before my daughter has had botox injections in steadof the ususal surgery and cutting of the tendons in her feet.
It has worked wonders!! I am so happy that the doctor that she is seeing has thought about this.
so now there are no more scars to affect her little legs, and no more trauma for us as paretns having to watch our little girl going through all that surgery entails.

The docotr that has handled her for the past few years said that they can give the injections in the dr.sofice but it is not covered by my medical plan so she books her a spot in the O.R., that way there is no cost to us.I forget what she quoted the cost at but it was a pretty hefty amount.


The doctor in question sees paitients at the childrens hospital in B.C. she is in the orthotics dept. She is ust an absolutley amazing doctor and I feel really lucky to have her. You do need a refferal to see her.

My family has a long history of Kentucky Dutch. To try to help with experience; here are a few tips. Life can be good, don't be discouraged. The syndrome may cause more mental stress for boys, who are expected in this society, to be athletic.
Doctors recommended that stacks of tongue depressors be used to increase the mouth opening of my son and daughter. It is difficult to discipline youngsters to this regimen. Our adherence wasn't of long duration. We did not see any improvement.
Teeth braces are possible. Dentists will always be confounded by the mouth size. If braces are needed ask about a palatal expander. Its works, but all of these things are tough.
I bought a trampoline when my children were young. They used it a lot. I can't say how much it helped but I'm sure it moved them beyond where they otherwise might have been. I recommend a trampoline.
With my grandchildren, my daughter is not giving them a child's chair. They will eventually lose the ability to set in an upright position on the floor although they possess that ability as a child. It does seem to be helping as they have retained that ability beyond the age where my children could no longer do so.
My son as a teenager was able to bulk up the upper body which looked very athletic. He was never able however to improve muscles in the legs.
Two children of my daughter were club footed(as a consequence of Dutch Kentucky) and were treated at Shriners as was my daughter in the 80's. The series of casts for my daughter did not seem to help at all and was very painful. My daughter allowed the casting treatment for her son but would not permit it for her youngest daughter. There did not seem to be any improvement with her son until the Achilles tendon was cut. Later he had a bone fragment removed from one side of the foot and placed in the other. He also had Z lengthening of tendons. Three surgeries in all. Her daughter did not go through casting. She did receive Achilles tendon surgery and her feet look better today.

Dentures are also possible, although these have to be custom made with very short teeth.

As strength wanes with age, channel lock pliers can help to accomplish many daily chores.

I hope this helps someone, there are many other things that keep coming to mind as I write.

Most of my family has dutch kentucy syndrome and was never researched until just recently when i had my son. We have a rare gentetic disorder that leaves us with a small mouth, can fully extend fingers when hand is bent at the wrist, short tendants in legs, fore arms ect. I have the same condition along with my mom but my sons is farther worse. His toes are bent straight down. We are doing physical therapy right now, but will this ever work. I just thought I would talk to others and see what you think.