Dumb Luck

I was reading through the Mayo information on Legg Calves Perthes Disease...the fine problem that Braden has and it sounds almost identical to Nathan's problem--but it's NOT.  The signs, symptoms, and treatments have similarities for AVN and Perthes, but there is no known cause for the problem except for the compromised blood supply to the hip. The results are the same as well-limping, shortened muscles, dead hips, needed surgeries, osteoarthritis, and ultimately--a need for a new hip, as well.
http://www.mayoclinic.com/health/legg-calve-perthes-disease/DS00654/METHOD=print

Causes

By Mayo Clinic staff
The underlying cause of Legg-Calve-Perthes disease — also known as ischemic (avascular) necrosis of the hip — isn't clear. But what happens is this: Not enough blood is supplied to the ball portion of the hip joint (femoral head). Without an adequate blood supply, the femoral head deteriorates. As dying bone cells are replaced with new cells, the bone becomes unstable, and it may break easily and heal poorly.
If your child is diagnosed with Legg-Calve-Perthes disease, he or she may be referred to a pediatric orthopedic specialist for treatment.

Treatment is designed to protect the hip from further stress and injury and keep the ball of the thighbone (femur) in the hip socket. While resting the joint may help, prolonged bed rest isn't recommended. Depending on the severity of the condition, treatment options may include:

• Anti-inflammatory medications. Over-the-counter medications such as ibuprofen (Advil, Motrin, others) can help relieve pain. They can also reduce joint inflammation when used for months at a time. The dosage may be decreased as your child's hip begins to heal. Although it is an anti-inflammatory medication, aspirin isn't recommended for use in children.
• Physical therapy. Range-of-motion exercises can help maintain joint mobility. These exercises can be done at home or with the help of a physical therapist.
• Crutches. Crutches can ease pain by keeping your child's weight off his or her hip.
• Casts, braces or traction. Temporarily immobilizing the bone can help promote healing. This may be done with leg or hip casts, leg braces or traction (applying a pulling force to the bone).
• Surgery. If a groin muscle has shortened due to excessive limping, it may be surgically released from the bone. After surgery, the affected leg is put in a cast for six to eight weeks to allow the muscle to grow to a more normal length. Sometimes the hip ball must be replaced within the socket. In other cases, the hip socket is repositioned.

Legg-Calve-Perthes disease can't be prevented. But with appropriate treatment, most children can go back to normal activities within 18 months to two years.

 

Symptoms

Signs and symptoms of Legg-Calve-Perthes disease include:

• Limping
• Pain or stiffness in the hip, groin, thigh or knee
• Limited range of motion
• Shortened leg on the affected side, in some children

In some cases, pain and stiffness get better when your child rests, only to reappear once your child is active again.
When to see a doctorTalk to your child's doctor if your child:

• Begins limping
• Complains of hip, groin or knee pain

According to Wikipedia:
Legg–Calvé–Perthes syndrome is a degenerative disease of the hip joint, where growth/loss of bone mass leads to some degree of collapse of the hip joint and to deformity of the ball of the femur and the surface of the hip socket. The disease is characterized by idiopathic avascular osteonecrosis of the capital femoral epiphysis of the femoral head leading to an interruption of the blood supply of the head of the femur close to the hip joint. The disease is typically found in young children, and it can lead to osteoarthritis in adults. The effects of the disease can sometimes continue into adulthood. It is also known more simply as Perthes disease,^[1] ischemic necrosis of the hip, coxa plana, osteochondritis and avascular necrosis of the femoral head, Legg–Perthes Disease or Legg–Calve-Perthes Disease (LCPD). http://en.wikipedia.org/wiki/Legg%E2%80%93Calv%C3%A9%E2%80%93Perthes_syndrome

Take the name away--and I'd think I was reading Nathan's medical records.  But Nathan has Acute Vascular Necrosis--not Perthes.  Braden has Legg Perthes--which, ultimately is Avascular Osteonecrosis.  So similar--yet not the cause or relation to each other!  So how did we get so lucky to get not one, but TWO bum hips in the same family?  As Dr Tompkins, from our Shriners' team says, the odds are one in a million--1/1,000,000.  He said with those kind of odds, we should be gamblers.  Nice.

So--Braden had surgery in September 2011 to help relieve some of the pain that he was having in his left hip.  I had to call and schedule another appointment for him on Monday, because it looks like the steroid pack was only good for six months. We are going to have to talk about options.  I don't know if I have the patience to wrap my head around everything that needs to be done right now. Nathan didn't have to wait till he was an adult for osteoarthritis to set in and put him on his back in pain.  I don't know how long Braden's hip will take to get to the point where we are with Nathan--but I think I just realized how important it is that we stay in Spokane, close to a Shriners' hospital that deals with such cases.  Nathan will be our trial run with the Mayo clinic, one of the Best Children's hospitals in the country.  We'll have an "in" when the time comes that Braden may need the same kind of surgery as Nathan. 

What were those odds again? Yep.  One in a million.  How'd we get so lucky?