For some, the architecture of the wrist differs from the norm. When the ulna (the skinny arm bone on the pinky side), isn't the same length as the radius (the fatter arm bone on the thumb side), the bones of the wrist have to act differently. The lunate, the specific wrist bone that is dying, has to take more pressure than it was built to carry. It may not be able to handle the job.

Another factor is the vascularization of the wrist. Most times the lunate has 2 or more vessels supplying it. For those with only one vessel, any insult, single or repetitive, can do harm.

Wrist x-rays are difficult to read at best; children's x-rays, more so. The bones are smaller and there are naturally occurring anomalies because the bones are still growing. Generally, it takes a well-qualified orthopedist to spot Kienbock's Disease even in adults; it's very common for this to be misdiagnosed more than once before it's finally caught.

There is some speculation that steroidal medications may be involved in the disease process. This evidence is largely anecdotal and applies mainly to Avascular Necrosis of the hip rather than the wrist, but even so, the conditions (like asthma) that warrant the use of steroidal medications in children, are far worse than Kienbock's Disease. In other words, even if corticosteroids may add to the possibility of developing KD, the risk of asthma demands treatment. No undue guilt should be felt if your child used corticosteroids.

There are other risk factors, you can find them by doing your research, but the fact remains that you did not cause this. You are not to blame. Nothing you could have done would have changed the course of events.

Things just happen.

Whatever has caused it, the lunate bone of the wrist is now dying. You want to know what happens next, how this will affect her in the long run, what are her limitations, what are the choices, and how you can help her.

An excellent place to begin your search for a qualified doctor is The American Society for Surgery of the Hand.

Read Questions for your Doctor. Take a clean copy of the printer-friendly version with you each time you visit the doctor. Make copious notes, date the pages, and keep them for reference.

Tell your child's doctor that Drs. Culp, Osterman and Bednar at the Philadelphia Hand Clinic have done research on pediatric Kienbock's Disease and may be available to answer questions.

Doctors tend to be conservative when treating kids. The first step is usually to cast the affected wrist, which lets it rest, protects it, and may allow it to begin healing on it own. In children under 12, this is often effective. In older kids and in adults, it's often not. Even in younger kids, the stage has to be taken into account. Earlier stages are most likely to benefit.

While in a cast, your child should have some restrictions on her activities. Obviously, no contact sports should be allowed. If she resists, tell her that, even though her own arm is well protected, her cast could hurt someone else. Kids usually will accept that better than telling them it's for their own good. This approach may also buffer them from any feeling that they may be to blame if the casting doesn't provide healing. After the cast is removed, there will be more x-rays to determine if there have been any changes.

See also: Cast Care

There will be lots of x-rays over the next few months. X-ray machines have come a long way in the past 50 years; they are safe. However, try to remember to ask that your child's torso be shielded with a lead apron to protect your grandchildren.

If there have been no changes, your doctor may continue with a wait-and-see approach. The determining factor in this would be pain. If there are no changes and no pain, wait-and-see may be the best course.

If there have been positive changes, if the wrist looks like it's rebuilding itself, so to speak, wait-and-see is definitely a good approach. Recheck it on schedule and react quickly to any injuries or pains.

If there are negative changes, further deterioration and/or pain, you may be given the choice to act quickly with surgical intervention. The available procedures are dependant upon the possible predisposing factors and the current Lichtman stage.

While you wait for surgery, visit the Pre-op Page.

There are many options for surgical treatment. You'll need to learn about them so that you can actively participate in your child's care. Most of the surgeries have about an 80% success rate, though some may go as low as 50%, which means there's at least a 20% chance that she may need another surgery in the future. However, those figures were taken from studies of adults. Children can expect to have a better outcome because they heal quite well.

Kids are resilient. Any limitations this does cause in the long run (the l-o-n-g run!) will be minor and she will adapt to them because she will know no other way. It may be that she can't be a star hitter for her baseball team or that she can't be goalie on the soccer team. She might not be able to dribble a basketball. Sports tend to be very hard on the wrist. That said, there's a pro golfer and a pro baseball player, as well as an Olympic gymnast who have all had Kienbock's Disease. You can read about them on our Celebrity Page

As your child goes through this ordeal, she may develop some changes in attitude. She may begin to lash out, to rebel against her limitations, to regress into earlier stages of childhood, to become sullen, or to withdraw socially. If these signs appear, seriously consider contacting a therapist to help her adjust, even if only for one or two visits.

As uncertain a time as this is for you and the family, it is doubly so for a child. She is faced with a pain that is hard to understand, limitations that seem insurmountable, and likely a fear that things will never get better. There may be feelings of guilt that she somehow caused this.

If at all possible, shield her from any knowledge of the financial burden this may impose on the family. Try not to let her see disagreement among the parents and/or step-parents about her treatments. Don't play "good cop/bad cop" with freedoms. These things would only add to her turmoil. Emphasize to her that this is not contagious and will not spread to other bones or other parts of her body.

There are small devices available that may help your child to be more independent.

Check out Active Forever for a few products like the Tab Grabber for soda cans, elastic coil shoe laces, North Coast Rheumatic's Black Lite Touch Pen, the Maddak Un-Skru Jar Opener, lap trays, and the Krups one-hand Open Master can opener.

A dry erase board with large markers and a Magna-doodle make easy-to-use note pads.

Loose fitting clothes like T-shirts and sweat pants are easier to manage than jeans and button-down shirts.

The computer, as a social outlet and school-work aid, can be upgraded to include a microphone for chatting, a trackball or touch pad instead of a mouse, and voice recognition software.

Within your judgment, monitor your child's computer activity and remind her never to reveal personal information, address, phone number, city, school name, age, even the name of her doctor, to anyone you don't know. --srhd.

Encourage her to remain active throughout the treatment to avoid putting on extra weight as she's hitting puberty (but don't dwell on her weight; she has enough to worry about!).

Take her to the library or book store as much as you can. She'll have plenty of time to read, so steer her towards the best classics for her age.

Attend local sporting events, carnivals and fairs, concerts, and plays. Getting out and sharing family activities is important. Maintain as active a lifestyle as is possible while avoiding those things which might cause a fall (ice skating or rollerblading) or overwork the wrist (bowling or fishing).

It's especially difficult for a parent to see a child in pain.

Over-the-counter medications such as Tylenol, Advil, or Aleve can be given according to the manufacturers' instructions. Sometimes prescription medications may be necessary.

Other comfort measures can be taken at home without the need of a doctor's orders or prescription. Often these measures are referred to as R.I.C.E.: Rest, Ice, Compression, and Elevation.

Of particular benefit in children is the use of distraction. If you can get her mind off her pain, you've won half the battle. Books and television are good. Stories and jokes are excellent. There's nothing more beautiful than the sound of her laughter.

If she's not in a cast, nag her about wearing her brace. It's important to wear it night and day unless her doctor says otherwise. At night, a brace protects her from the habit of curling or compressing the wrist. During the day, in addition to supporting and protecting, it reminds her and her friends that she does have limitations.

Expect and encourage her to do anything she can. While she may not be able to open a jar of mustard, she is quite capable of cleaning it up if she spills it. She should be able to perform most of her own grooming aside from brushing long or thick hair or fastening difficult buttons or zippers.

Discuss with her how best to handle people who ask her what is wrong with her wrist. She may be embarrassed to say that she has a painful bone condition that requires surgery and recovery. Help her to decide the morality of the little white lie in this situation and how it is used in a polite society.

If you do not feel it would compromise the morals you've tried to teach her, help her to understand that she is not obligated to truthfully answer personal questions posed by well-meaning strangers. Most often people are just making conversation and have no other way of showing care and concern aside from asking, "What did you do to your arm?" Saying that she "broke it" is answer enough in most instances, just as we all tend to say we're "fine" when asked how we're doing.

Inspired by Jennifer
Dedicated to Renee