Dutch Kentucky Syndome

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.

Dutch Kentucky Syndrome has been in our family for many generations. I am affected with it along with 1 out of 3 of my children. We have adapted with it for one because you have to. I just say I have my own way of doing things! (exspecially when it comes to using my hands.) When I was a child I was a little shy & self concious about it but came out of that as a adult now I can do anything I set my mind to. I have been a hairstylist for 13 years and can out bowl my boyfriend! Both of those things you think would be impossible with the short tendons in the wrists. So if this helps anyone who has the same thing we have even if it just helps the self concious part of the disease for someone i will be glad. And I was suprised to know there is alot more people with this than I knew, gosh i thought my family was the only ones!!!

My 5 year old son was just diagnosed with Hecht's Syndrome or Dutch Kentucky Syndrome. He is showing symptoms with a very limited jaw opening, shortening of tendons in hands and feet. He has had one surgery on his jaw, but that seemed to have a limited impact on the opening. Just looking for someone who has had some experience with this disorder :)

Here is what I know. Ask question! Your doctor has probley never even heard of this much less seen it. But they have to put on a brave face and give you a plan any way. This means that they may be (and in the case of my family) wrong. We treid stretching my brothers mouth and it was extremely painfully and tramic. It wasn't till my mom saw his ex rays and realized that his jaw bone was disformed and hooking onto his skull that we realized that this would not help him in the least. All that pain for nothing. Getting all of your doctors on the same page is a pain as well. What worked for me is getting them to write all they know out and giving it do the other worked better than playing telephone through me. The most important thing is that you are your biggest advocate. You live with this. You know your body and your abilities. Tell the doctors that! If you went to a pest control guy and said you had an ant problem and he said it was because you kept your house to hot you would not hesitate to get a second or even third opinion on that. Then why put blind faith in a person who may have found your diagnoses on Google; or worse in a book of diseases that VERRY well may have been published before the move Twilight came out. And yes my doctor found our diagnoses in one such book. Stay positive because your are a beautiful and powerful person who can kick butt and take names even if you can't fit a cupcake in your moth hole!

I'm in my mid 30's now, and have what I would guess would be a mild case of this disorder; severe inability to open hands fully, restricted mouth opening, and slightly in the feet.  I did see a doctor when I was much younger and actually had 2 surgeries on my mouth.  At that time, which was some time in the mid 80's, there didn't seem to be a lot of available information on proceedures that were even remotly successful.  I remember extrememly painful sessions of jamming popsickle sticks in my mouth hoping to stretch tendons, followed by an amzing advancement in technolgy when a large wooden screw was used in place of the popsicle sticks.  All to what seems to be little to no improvement.  I am wondering now if anyone has been more recently and if there have been advancements enough that it would be worth going through this again.  I have certainly learned to live around the limitation, so it would just be for my own benefit, not out of necessity.   I was amazed to see people even discussing this, so I am very curious of any new information!

I have this. One surgery at 1 yr old. 55 now and having trouble from rotator cuff tendons. Does this progress with age?

Thank you for the tips. I was born with DKS as were many of my family members children and grandchildren. I am now 70 years old and I am finding the muscles in my legs feet and back are getting shorter and tighter. My mother ended up crippled because it was too painful to try to walk. She was born clubfooted and always had a certain amount of deformities. Any tips that anyone has would be greatly appreciated

I have a 15 year old daughter and my wife was both diagnosed and confirmed by dna that they both have Dutch Kentucky , my wife shows in hands and mouth , thru my daughters infancy Dutch Kentucky was discovered because of extreme failure to thrive and while the GI doctors at children’s hospital in Cincinnati Ohio USA was about to do a operation to check out her upper digestive tract they discovered the mouth which having smart doctors knew instantly what was wrong confirming first by looking at both my hands feet and my wife , then they followed up with DNA testing , which I can tell you the closest testing lab around us was in Canada , our journey started in 2005 , my daughter lived 12 years on a feed pump to receive enough calories to live , at 12 the button was removed from her belly although she can only open her mouth about a half inch ,
I have yet to find a knowledgeable doctor other than the GI department that knows how to keep these babies alive , my wife brother could only open his mouth about a half inch at the age of 18 in 2004 a dentist misdiagnosed his mouth and operated treating him for TMJ my brother in law now can not open his mouth and forces food between his teeth to eat , Children’s hospital doctors will not operate on Kentucky Dutch , because there is no mouth operation that has been proven to work , we used , wedged rubber exercise pieces for my daughter to chew on while trying to force into mouth to stretch the tendon , there was not a measurable improvement over several years .
I read once in a medical magazine that a China doctor removed a set of tendons in the second stage of mouth opening and fixed the mouth , since this was never proven to work it is not a option in the States , since my daughter is able to maintain weight she is no longer considered a risk and now we have no help unless her condition worsens . Dealing with rare disease in the United States is tough because most don’t know and the ones that know don’t understand , this is what I can offer , I’m. Going to look for a Facebook group if I can’t find one I will create one come and find

Hi I have found a few message boards that are like this one , people post but it's over time and really don't help , I have made a public group on Facebook called Kentucky Dutch syndrome , please join the group if your family deals with this disorder , The group is for support and sharing knowledge, Thank you , if this isn't allowed on this board please delete and sorry for the troubles but there comes a time that we need to pull together to get our loved ones knowledgeable help !