Hi Everyone,

My son had his 3-month clinic appointment yesterday and they let me know his hip is (or was) dislocated. At his previous clinic appointment he had an x-ray to monitor any possible scoliosis. At that time, they noticed his hip was dislocated. I was not notified until yesterday. I was told that it is common w/DMD because the muscles are weak and don't help to keep the joint strong. They won't do surgery because of the risks associated, and the fact that he isn't walking (and doesn't seem to be complaining about it). The fact I wasn't notified is what upsets me the most. Looking back over the past few months, I've been getting up to turn him more at night (previously he didn't complain as much), which I think is more about his hip that general aches/pains. It would have been helpful to know it could have been his hip bothering him. It also would be good to have in mind when lifting him. Basically, the drs. advice to me was to put a pillow in between his legs at night to keep his leg neutral (straight). Has anyone else experienced this (hip displacement, in general)?

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I would be SO angry that my Dr did not call and tell me this!! How long b/w appts was it? How long had they known his hip was dislocated and didn't tell you? Seems to me that is malpractice!!! I am not suit happy, but I am SO SO SO tired of docs 1. not knowing, 2. Not caring (because what difference would it make anyway?) and 3. not being willing to find out ANYTHING!!!
I am sorry to rant, I hope your son is better and I am so sorry that you have had to endure this!!! Unfortunately/fortunately(?) I can't help you with this one as I have not experience it, but I can be angry with you!!!
Lori
Hi Lori,

It has been 3 months since his last appointment (and since the x-ray). The doctor basically told me that she reviewed the x-rays the night before his appointment (which was this past Tuesday night) in preparation for today's appointment. Yesterday morning, she went to the head clinic doctor to ask if we had been notified and if it was normal. He told her it was common and explained that when the muscles around the hip are weak, they don't help to keep the joint in place.

No worries about ranting. I'm pretty upset about it, as well. Like I said before, I've never experienced anything like this and am really not quite sure how to handle.

Thanks for your input and support!

Take care,
Christina
Christina,
As well as being a parent, I am also a PTA in rehab. I deal with hip replacements all the time. When a patient has a replacement, they are not allowed to
flex hips past 90 degrees. This is tricky because you flex this much when you reach for things in the seated position.
He cant internally rotate hips, this means no pigeon toes, even when sleeping. Put a pillow between his feet when back sleeping.
He also cant cross legs or ankles. Put pillows between knees when sleeping on unaffected side.

Hope this helps,
Write me if you need more suggestions.

Chrisitne
Hi Christine,

Thank you for the information, it is very helpful. I was told about putting the pillow in between his legs at bedtime, but not with as much detail regarding the limitations as you've provided.

Thanks,
Christina
Hi Christina
Why dont you email Helen Posselt and see what she thinks. Her email is helenposselt@ozemail.com. I was told that positioning in a wheelchair is helpful to avoid this. My son is in an Invacare. He has knee abductors to help postion his legs to stay closed. Not too much pressure, just enough. He also has hip guides and foot plates and laterals to help in positioning.
Michelle
Hip precautions are highly recommended after a person has fractured a hip and then had a hip replacement done to correct the problem. Using the proper hip precautions ( i.e., no adducting the hips/legs, no flexing the knee over 90 degrees, etc) prevent the hip from dislocating ( popping back out of socket) again. Also, people with hip fractures and replacement use a raised toilet seat over the toilet to keep their hips from bending over 90 degrees. Does your son use the toilet? An OT or a PT can order your son a hip abductor pillow to sleep in at night to prevent him from bending abd crossing his legs if the orthopedic doc thinks this is necessary or if your son can even do these movements in the bed. Eventually, Duchenne boys/men can't move their own legs and we need to turn and reposition them.
Since your son did not have surgery, his precautions may not be that restricting. I would suggest a orthopedic consult and follow his/her recommendations if this has not been done, already. Is he having any pain? I understand him not being a surgical candidate since he's nonambulatory but wouldn't they want to do the surgery to prevent arthritis from developing or his pain from getting out of control? They operate on boys with femur fractures. Huh?
Don't be hard on yourself for not discovering your son having a problem. If he wasn't having any pain, how would you know something was wrong? Indicators of a fractured hip aside from a positive X-Ray report and pain would be: obviously a sign of deformity with the leg, internal rotation of the affected leg ( the foot and toes would be turned inward) and the affected leg would be shorter than the other leg.
Keep us posted - Wishing your son a speedy recovery and NO PAIN!

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