[tri-med] Re: dislocated hip

----- Original Message ----- 
From: "Wright"
>>Cindy was very concerned about the dislocated hip.  The doctors told her
it would be a 5 hour surgery and she doesn't think he could survive this.
If they wait a year, it could cause him a lot of pain.  She is wondering if
any of your kids had this surgery and what the outcome was.

Hi Jayne,
This isn't a problem for Alex and my only experience with hip dislocations
has been through my work as an OT.

What is the cause of the dislocation? Children like our kids often suffer
from hip dislocation because of the low tone and using standing frames is
one way of helping to prevent the dislocation.

Technically the hip becomes dislocated through subluxation of the joint.
Basically there is so little tone that the hip just slips out of the socket.
The muscles and tendons are not worked (because our children don't walk) to
give the added support of keeping the hip in the socket, it also often
confounded by having shallow acetabulums (the place where the ball fits into
the hip)

Dislocations due to this reason generally give no or very little pain. The
only time you get pain is if the bones manage to pinch some tissue, this can
be avoided by proper handling and positioning of the limb.

This is not just guesswork or an assumption because our kids can't talk. The
other common condition where subluxation / dislocation of joints occurs is
severe rheumatoid arthritis. Folk with arthritis actually say its less
painful for them once the joint has completely subluxed. (and for these guys
its not just hips but wrists, fingers and shoulders)

What causes pain is if the leg is left dangling (it must be supported at all
times) as the weight of the leg pulls the nerve endings (legs are HEAVY) and
puts pressure on the capsule and may lead to tearing of the capsule.

Their physical therapist should be able to show them how to carry Jonathon,
support the hip and position him so that he is comfortable. They should also
be able to show them how to modify his standing frame so that he is still
weight bearing on the other leg - important for bone strength and so that
the other leg doesn't dislocate also.

I have worked with children who have had hip dislocations for many years
with no measures take to surgically fix the joint. Usually they wont
surgically intervene unless there is a reason - eg the child walks or needs
to have use of the joint for weight bearing.

If there is surgical correction usually the just pin the leg into the
acetabulum. Its effective for a while but does limit the range of movement
of the leg. Often this surgery comes undone after a while (sometimes very
soon) because the bones are often weak and "soft" so the pin just falls out.

Similarly a full hip replacement is usually out of the question for the same
reason - the bones are in such a state that there is nothing to cement the
prosthesis to.

Not much help, but I hope that it gives her some reassurance that Jonathon
shoiuldn't be in pain if they don't go ahead with the surgery. All
orthopedic surgery is risky, and this procedure is no different. Plus you
have the added worry that the surgery may not be very effective. Hard call
but from experience I would defer on the surgery unless it becomes evident
that Jonathon is in pain (does happen infrequently when the dislocation
manages to tear the joint capsule).

"I wanted a perfect ending. Now I've learned, the hard way, that some poems
don't rhyme, and some stories don't have a clear beginning, middle, and end.
Life is about not knowing, having to change, taking the moment and making
the best of it, without knowing what's going to happen next. Delicious
ambiguity."
- Gilda Radner -

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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