14 yo Cant walk any more, all scans clear

Posted , 6 users are following.

Hi,

Not too sure where to post this as we dont have a diagnosis yet...

14 Year old daughter who has been dancing for many years, approx 3 nights per week, has never had any knee issues or injuries.

4-5 months ago she started have sore knees, we thought it was just growing pains.

Knee's became so painful she had to stop dancing and walking was becoming difficult, doc susspected Osgood Schlatter syndrome.

1 month later my daughter cant go to school and is confined to a wheelchair at home, just too painful to even stand up.

Doc does not know, referred us to a pediatric speacialist who ordered x-ray, MRI's on both knees, bloods.

X-ray = normal

MRIx2 = normal

Blood tests incl Lupus = normal

She has full movement but just increadibly painful, she descibes it as bone on bone grinding.

Knees have NO swelling though are hot to touch.

NO redness

She has NO fever

The knees DO crack when she tries to move, this cracking sends a shooting pain down her calf and she is then in pain for several hours afterwards and crippled. We have been to various hospital emergency depts when this happens, they dont know the cause and can only offer drugs Endone which does not even help with the pain...

Pediatrician has referred us to a child Rheumatologist, waiting for appointment.

She has been off school for almost 3 months now and in a wheelchair for 2 months.

Any ideas appreciated...

0 likes, 14 replies

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14 Replies

  • Posted

    http://patient.info/health/osgood-schlatter-disease-leaflet

    It looks like your doctor was right.

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    • Posted

      Thank you for the responses.

      Speacialist disagreed with initial docs diagnosis of Osgood schlatter as that normally is not debilitative to the extent of being wheelchair-bound.

      I guess it could be an extreme case...

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  • Posted

    Rest......rest......rest. Icing a couple of times a day to help swelling. Muscle simply fatigued. Through one of my grandkids I met a pediatric ortho at a children's hospital. He was all for physical exercise daily for kids but his opinion was that kids who go from one sport to another seasonally are in for problems because they just don5 give their muscles a chance to recover from muscle fatigue. Even adults that are in speciality sports like weight lifting , etc are told to rest every other day. Look at baseball pitchers.....game day they throw hard and long....100 plus pitches.....then straight to a bucket or tub of ice water to start the healing....next day complete rest except or a light jogging or sprinting but no throwing. Day 2.....little heavier leg/lung lifting work....day 3 .....leg work/controlled lifting and throwing on the side then day 4 or 5 back to the mound. Never do they do the same thing every day the same way. Kids in dance, gymnastics and some other sports push it hard every day and never take a day off completely. Some even participate in 2 or 3cat the same time and The work load can actually be counter productive.

    You next group of Dr's may find something more specifi or a completely different rationale. Lets hope it's more overload than complications

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    • Posted

      I usually agree with what you post, but this little girl doesn't have any swelling. She says her daughter is only dancing three days a week, so it's not even an every day thing. If it were, your response would be right on.

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    • Posted

      I'm guessing she practices on her days away from the studio. With certain types of strain you don't have much external brusing and what you have internalized. Its the continual starin on the soft tissue and where it attaches to the bone. Similar to shin splints. As an example but certainly not in the same category: if you get a bump on the head its much more severe and dangerous if the swelling inward than if you have external swelling. My guess, a neurologist will also be involved because some of this is nerve related. I've Never been in or around dance students but have been involved in athletics all my life. I've always been one to schedule practices at different levels of exertion and excercise and know from experience you can't keep putting the same strain on the same muscles over and over without problems. There is no difference in the strain of practice at home, in a studio or performance. Getting the right professional is going to be key and listening to their advice, more important.

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  • Posted

    The poor por little thing of course I can't say what is wrong but the referral sounds good and also to say a friend of my daughter had similar problems sadly I can't say what it was called but she too is a dancer,in the end they operated on her knees and the good news is she now has her own dance school. So take heart there will be an answer out there I'm sure,it just needs to be found 

    Very very best wishes

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  • Posted

    Reading through the leaflet the link sends you to, it looks like once she has stopped growing it will gradually go.

    Girls reach their full height at around 15, so hopefully things may start to improve soon.

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  • Posted

    Reading this just breaks my heart. I can only imagine how yours has hurt. I hope someone on here might have some light to shine on this. I'm praying the medical people you interact with will quickly be able to diagnose and start treating her.

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  • Posted

    Thank you to all for the responses.

    One thing I didnt mention was that the speacialist disagreed with initial docs diagnosis of Osgood schlatter saying that its not debilitative to the extent of being wheelchair-bound...

    I guess it could be an extreme case...

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  • Posted

    Hey, I replied to you in another post but it's being moderated because I also included a link.  Please look up Complex Regional Pain Syndrome....is it possible your daughter has this? It affects teens, I believe the majority are active girls.

    A friend of mine's daughter had it when she was in middle school..severe pain in her feet/legs. She couldn't walk...she missed months of school.  She was admitted to a Children's Hospital for in-patient treatment over the summer a few years ago.  With physical therapy and counseling, she is pain free today.  Good luck to you.

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  • Posted

    Hi,

    I am pleased to announce that after a further 4 months our daughter is now walking again and transitioning back into school.

    Official diagnosis was CPS (Complex Pain Syndrome), as I have come to understand it its a kind of like a loop the body & brain gets stuck in where anxiety of pain amplifies normal muscle pain so rest is sought exaserbating the sensations when movement is attempted again, more rest = more pain to the point where movement is restricted altogether!

     

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    • Posted

      Diagnosis is always the key but such a rare (I'm assuming it's rare) one had to be both enlightening and a relief. I remember when you 1st addressed the situation on this forum and you could feel the anxiety and fear in your words. Hope all continues to go well. What's the prognosis as far as the future of dance?

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    • Posted

      Yes, it certainly is a relief, 8 months in total off school, 5 months in the wheelchair!

      She is actually starting dancing again tonight, it will be a slow transition but a long awaited one.

      Thank you to everyone for your thoughts and interest.

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