
The 3 courses of treatment for hip instability are 1. leave it alone. 2. wait and see and do a hip replacement when necessary. 3. or more aggressive treatment. Most doctors have been going the "wait and see" route, because surgeries have shown to have a 50% failure rate in patients with Trisomy 21. There has also been a high rate of infections after the surgery. Children's Hosptial of Philadelphia, however, has worked to find better answers and possibilities for treating their patients with Down Syndrome. After researching the cause of the hip instability, they found that patients with Down Syndrome have hips that are tilted backward, and they dislocate to the back. They perform a procedure called "complete redirectional acetabular osteotomy", which provides more support and stability in the back of the hip. They actually reorient the socket to prevent the it from slipping back. The success rate has gone from 50% to 91% with this new technique. That alone makes me LOVE CHOP!
The other hip disorder is called a slipped epiphysis or SCFE. This is common in adolescents, and it is higher is boys and the African American population.

Factors that affect the SCFE are endocrine or horomone factor, overweight, and Trisomy 21. The symptoms are hip, KNEE, and thigh pain. Knee pain is highlighted, because it is a common complaint, even though it is actually the hip causing the problem. The child may also have a limp or worse gait than usual. The SCFE is often misdiagnosed as a groin pull. Since patients with Down Syndome can often have a limp, it can be difficult to diagnose this problem. The patient may not express pain, but their limp or walk will change. These are all signs to watch out for. Doctors find that treating the SCFE an be difficult, because the patient may not comply afterward with staying off of their feet to heal. There is a high rate of bone death from a SCFE.

Thinking of all of these things can be overwhelming. I often wonder about Kamdyn, because her hips are very loose, as most children with Down Syndrome are. I try to push away the worry, and just file these things in the back of my mind, just in case I need them one day. Writing it out like this also helps me remember it.
I am really excited about my next post. It's going to be about making a Care Notebook. I am just getting started, but I am very excited about it.
A little sneak peek.
Our 4 year old Allison was just diagnosed with his dysplasia. Very trying time for us as she had heart surgery at age two and that was rough. I will mention what I read here and hope that she will not have to go through anymore pain.
ReplyDelete