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sgalg 11-25-2003 06:21 PM

very mild Cp and hip pain
 
My daughter is 12, a straight "A" student, and has just recently been diagnosed with very, very mild CP. We went to an orthopedic doctor 6 months ago for hip pain. The doctor discovered some abnormalities in her right side that we had seen and pointed out to our pediatrician since she was less than 1 year old but could not get anyone to help us with at the time. The orthepedic doctor referred her to a nuerologist who after listening to her life from birth to now and ordering a brain MRI has diagnosed her mild CP. At this point we still do not have any answers regarding the hip pain which lasts about 3 weeks and comes back every couple months.

Is anyone else experiencing intermittent hip pain with their mild CP child?

desperatemother 11-26-2003 02:29 PM

Re: very mild Cp and hip pain
 
[QUOTE=sgalg]My daughter is 12, a straight "A" student, and has just recently been diagnosed with very, very mild CP. We went to an orthopedic doctor 6 months ago for hip pain. The doctor discovered some abnormalities in her right side that we had seen and pointed out to our pediatrician since she was less than 1 year old but could not get anyone to help us with at the time. The orthepedic doctor referred her to a nuerologist who after listening to her life from birth to now and ordering a brain MRI has diagnosed her mild CP. At this point we still do not have any answers regarding the hip pain which lasts about 3 weeks and comes back every couple months.

Is anyone else experiencing intermittent hip pain with their mild CP child?[/QUOTE]



hi,
my daughter has cp shes 15 about 18mths ago she started complaining with a pain in her hip. some times it was really painful and she couldnt walk other times she was ok. the orthopedic doctor had her hips xrayed. has your daughter had xrays on her hips? the problem with my daughters hip was that there was a small piece of bone splintered and sticking out. causing her the pain. this may not be the case with your daughter . all i can say is if she keeps getting the pain get it checked and keep getting her checked until you are satisfied with what the doctors are telling you. good luck :)

sgalg 11-28-2003 05:17 AM

Re: very mild Cp and hip pain
 
[QUOTE=desperatemother]hi,
my daughter has cp shes 15 about 18mths ago she started complaining with a pain in her hip. some times it was really painful and she couldnt walk other times she was ok. the orthopedic doctor had her hips xrayed. has your daughter had xrays on her hips? the problem with my daughters hip was that there was a small piece of bone splintered and sticking out. causing her the pain. this may not be the case with your daughter . all i can say is if she keeps getting the pain get it checked and keep getting her checked until you are satisfied with what the doctors are telling you. good luck :)[/QUOTE]


Hi, Thank you for your response. My daughter has had hip x-rays and an MRI but nothing conclusive was found. I have not been happy with the doctors' willingness to continue to search for the cause of the pain. Now that the pain has returned, I plan to start over with new doctors. I am hoping that they will use her past images as a baseline and do new x-rays or an MRI to compare. What have they done for your daughter. Did she have to have surgery to remove the bone splinter? How is she doing now?

desperatemother 12-07-2003 02:13 PM

Re: very mild Cp and hip pain
 
[QUOTE=sgalg]Hi, Thank you for your response. My daughter has had hip x-rays and an MRI but nothing conclusive was found. I have not been happy with the doctors' willingness to continue to search for the cause of the pain. Now that the pain has returned, I plan to start over with new doctors. I am hoping that they will use her past images as a baseline and do new x-rays or an MRI to compare. What have they done for your daughter. Did she have to have surgery to remove the bone splinter? How is she doing now?[/QUOTE]


hi,
my daughter has had operations, and the splinterd bone was corrected although the operation was not just for that she had her legs straightened and muscles, tendons stretched metal plate put into her legs to help. i dont think they would of operated just for the splinter it was seen to because they were working in that area anyway. the metal plate they put into her leg hips and foot her right leg hurt her after havin this put in. and weve had a really bad few months with her her leg swole etc eventually they took notice and discovered that her leg was infected she had the metal plate took out of the top of her leg on thursday shes now back home and out of pain.
as i said before if your daughter is in pain keep on at them make a fuss and get her seen by another doctor if your not happy with results. a child dont say there in pain and carry on saying it for no reason in my experience.
good luck keep me posted

AliceBlueBelle 12-07-2003 05:25 PM

Re: very mild Cp and hip pain
 
something as simple as one leg shorter than the other can cause problems. It doesn't have to be very much and usually not noticeable. It may be that she is not walking smoothly and may need a little physical therapy to stretch and strengthen. I think I would ask the doctor if, he doesn't suggest it first, if he thought that physical therapy might be helpful. If you get a good therapist they can be very valuable with their knowledge and suggestions.

Best of luck in your quest.

alice

prisc1125 12-16-2003 07:48 PM

Re: very mild Cp and hip pain
 
Hi
I am 35 with mild spastic diplegia, just dx'd 3 yrs ago prior to multiple (four as of Feb) foot surgeries to correct talipes equinas. It became quite clear through the pre-op gait tests and my recoveries that my hamstrings and hips were also fairly involved. In fact, prior to the surgeries, I had a pretty marked inversion and continue to despite the work.

Aside from my calf and foot issues, I've been dealing with the hip flexor pain that comes and goes with various and often unpredictable triggers. I often held my leg up during the extended recovery and that started the cycle of pain. My ortho noted a leg length discrepancy and rx'd a small lift for my shoe. I agree that the leg length discrepancy can contribute greatly to the hip pain, esp since the whole body is a kinetic chain with muscles and joints, etc. very interdependent. With spasticity, the compensation and wear are even that much greater.

For the hips, I've had myofascial release massage work done in a PT setting (easier that way for insurance purposes) and had marginal success -- not sure why. I do Pilates now to strength the core muscles and stretch the limbs/encourage ROM. Having a strong core has helped me enormously. I also swim alot and bike/do weights. Used to be a distance runner but things are different now.

Being active has been important to encourage that ROM in the hips, etc., and keep me going mentally. I try all modalities and am slowly learning how to gauge myself. It is a hard pill to swallow, but trial and tribulation have been what this journey is all about.

Good luck and feel free to ask any questions. I've been there lots and intensely over the last three years and am more than happy to share knowledge/experience.

Cheers,
Prisc1125

blackbelt 01-03-2004 05:41 PM

Re: very mild Cp and hip pain
 
Hi,
I have mild cp and I'm 26. I used to have extremely bad hip pain from ages 15-23. No doctor was ever able to tell why the hip pain occured. The doctor never did any hip x-rays. I do have one leg longer than the other. My right leg is 3/8 an inch longer than the left. I got a "lift" in my left shoe, and this evens me out. This relieved the hip pain for a while. When I took a class that involved running 1 1/2 miles 3 times per week, my hip throbbed.
In college, I thought the pain might be related to my gait. My hip was still hurting, especially when walking across campus to class. ( I could've driven, but I hate sitting still, and hated the traffic on campus) I walk flat footed with my right leg. My right ankle and knee also go in the inside. I thought this way of walking might have something to do with my hip. I thought a brace might improve my gait and reduce or eliminate the hip pain.
My second opinion with an orthopedist proved to be a life saver. He prescribed the brace (an AFO=Ankle Foot Orthosis). On the first day I got it, I ran around in the front yard with the dog. My leg didn't hurt at all! :D Sometimes my hip still hurts, but sometimes this is from doing too much exercise (like running a 5K run on New Year's Eve), or from not wearing my brace (it has been causing pressure sores lately, so I've been keeping it off).
My brace has been a life saver. I can now move relatively pain free. However, if someone had told me to wear a brace when I was 12, there would have been no way. I already felt like I stuck out because of the cp.

BB

musicmaker650 01-04-2004 02:58 PM

Re: very mild Cp and hip pain
 
[QUOTE=prisc1125]Hi
I am 35 with mild spastic diplegia, just dx'd 3 yrs ago prior to multiple (four as of Feb) foot surgeries to correct talipes equinas. It became quite clear through the pre-op gait tests and my recoveries that my hamstrings and hips were also fairly involved. In fact, prior to the surgeries, I had a pretty marked inversion and continue to despite the work.

Aside from my calf and foot issues, I've been dealing with the hip flexor pain that comes and goes with various and often unpredictable triggers. I often held my leg up during the extended recovery and that started the cycle of pain. My ortho noted a leg length discrepancy and rx'd a small lift for my shoe. I agree that the leg length discrepancy can contribute greatly to the hip pain, esp since the whole body is a kinetic chain with muscles and joints, etc. very interdependent. With spasticity, the compensation and wear are even that much greater.

For the hips, I've had myofascial release massage work done in a PT setting (easier that way for insurance purposes) and had marginal success -- not sure why. I do Pilates now to strength the core muscles and stretch the limbs/encourage ROM. Having a strong core has helped me enormously. I also swim alot and bike/do weights. Used to be a distance runner but things are different now.

Being active has been important to encourage that ROM in the hips, etc., and keep me going mentally. I try all modalities and am slowly learning how to gauge myself. It is a hard pill to swallow, but trial and tribulation have been what this journey is all about.

Good luck and feel free to ask any questions. I've been there lots and intensely over the last three years and am more than happy to share knowledge/experience.

Cheers,
Prisc1125[/QUOTE]

Hello guys,

we all have mild CP don't we? Mild or not, CP causes us to walk a litlle different, stand a little different, and even sit a little different. I hated braces when I was young too, and at your ages, you still have a long life ahead of you. The main thing to do now, is to try and find out what is causing your pain. From what you say, it sounds like joint inflamation. I hope you haven't damaged the joints, but it would seem like your doctors would be able to detect such damage.

I played wheelchair basketball for 10 years. I have worked out in a gym for 6 years straight. I can bench 400 pounds, so I am not a stranger to your athletic abilities. I am 53 years old so please believe me, I am not lying to you... We need to learn to accept our disability and live with it, and not to deny it! I was told at 11 that I would need new knees by 50. They forgot the fact that my legs were operated on to make them stiff, so that I could stand upright without using braces. When legs are stiff the knee joints aren't used much right? I have exercised my legs the best I could for years. I have had the hamstrings, and quadresept OP's too. I have no foot, knee, leg or hip pain. At 53 I do have arthritis in my right thumb, and the usual aches and pains of age. You don't have to do a lot of exercise, just joint motion, and mild stretching, until you know the status of your hip joints. You are young, and I'm sure you don't want to have to use a wheelchair later. For me, I like to choose wether I use my wheelchair or not, on any given day. I do use 2 canes when I walk though. I am tall at 6 foot 1 inch. That's tall for a gimp, believe me. My back knows it!

Good luck to you!


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