OCD...Osteochondritis Dessicans...Anyone?

[kristenrice]

Earlier this year, my DD7 began to complain of her knee getting sore. Her complaints were seemingly random (i.e. not related to an injury or increased activity) but seemed to come on when it was time for bed/school/church etc. So, like a typical mom (who experienced the same type of pain all through my youth), I told her it was "growing pains" and treated her with ibuprofen like my mom did. When I was in high-school, my parents had my knees x-rayed and the diagnosis was "bad knees" and I was told that I could not run more than a mile. I had some PT to strengthen my legs, but I played softball and volleyball with no restrictions other than the "no running". I assumed that DD was experiencing the same type of random knee pain that I had as a kid.

This went on and off for about a month. One day, I went to pick her up at gymnastics class and noticed that she had her left leg bent and she would not bear weight on it. I asked her why and she said, "It popped". It wasn't swollen and she wasn't crying or complaining of pain so I simply carried her out to the car and we went home. I figured she was being a little drama queen and she'd soon forget about it. Lo and behold, the next morning, she was still hopping around and said she could not straighten her leg or bear weight on it. Hmmm...so DH took her to the walk-in orthopedic clinic where they did immediate x-rays. The initial diagnosis was Osteochondritis Dessicans of her left knee. She had an MRI the next day which confirmed it. The doctor said the lesion is still intact and there are no loose fragments within the joint. She has a very minor effusion and two, small bone contusions to her tibia. She never had any trauma to her knee so we are assuming that it is somehow congenital even though I was never formally diagnosed with it.

DH took her to her follow-up appointment and the initial recommendation was 3 months of no impact...no gymnastics, no running/walking more than 1 mile without rest and no excessive jumping (trampoline, etc) which made for a great summer. I have yet to meet her doctor but I have done some internet research on the condition. Most of it is geared towards adults diagnosed with the condition. In adults, surgery is usually the only treatment option. In kids who are still growing, the condition can stabilize as the bone grows.

I am taking her to her appointment next week and I will talk more about it with the doctor. From what I've gleaned from the internet, it looks like the "no impact" and no excessive walking is the recommended treatment for children with OCD. I am concerned that this will last until well into her teenage years when she finally stops growing. That would make her miserable since she is such an active and athletic kiddo. Another (very minor) concern is how this will affect our WDW trips. She would certainly be on her feet for an excessive amount of time and there is no way I would get her into a stroller or wheelchair. Is this something where a GAC would help, by getting her a place to sit in line vs. stand?

Does anyone here have experience with OCD, particularly juvenile OCD? It is a very rare condition (15-30 out of every 100,000 people have it) so finding first-hand information is a little difficult. Any personal experiences would be appreciated.

 

[WheeledTraveler]

There is no place to sit while waiting for a ride at WDW if you don't have a wheelchair or stroller. It's not a matter of getting a GAC, the seats just don't exist. Also the majority of walking/standing is between rides and there seem to be fewer and fewer benches at WDW as time goes on. Despite the fact that it would be a fight, for places like WDW I'd suggest using either a "stroller as a wheelchair" GAC or renting a pediatric wheelchair. At 7 quite a few kids use strollers at WDW who wouldn't at home (or most other places) so she won't stand out, but as she gets older, the pediatric wheelchair may be a better option. I know you'd have to have the fight with her, but she is old enough to have it explained to her that doing this now will prevent problems down the road (not to mention prevent more pain). WDW is honestly one of the best places to use a mobility aid, as well. She's not going to be happy about it either way, but considering it's hard to walk less than 6 miles in a day at WDW, it's something you might have to insist on. You really can point out that if she uses the mobility aids now, it should hopefully prevent her having problems as she's older. If she doesn't use them, she could make it even harder for herself long term and not be able to get back to the activity levels she loves.

I don't have experience with Osteochondritis Dissecans, but I do have a condition that got blamed on "growing pains" as a kid (and that involves severe knee problems). I'd suggest direct her exercise activities towards things that are low impact. I don't know what her doctor would think about bike riding with her knees, but swimming (other than breast stroke) is a great low-impact exercise. If you have access to a pool or can find a local swim team, that may be a good direction for her. I'd explain to the doctor that she very much enjoys being physically active and you can't just direct her to more sedate hobbies. It's also worth asking if there's physical therapy or something else she can do. If you aren't satisfied by this doctor, don't be afraid to get a second opinion. I'd also highly suggest getting her some therapy to deal with this since it looks like it's going to continue to be a on-going problem. (I'm assuming based on how you've posted that while her symptoms are such that she's weight-bearing, she's still in some pain.) It sounds like your entire family may be quite active and it is hard as a kid to deal with not being able to do what everyone else is doing. My family didn't recognize that I had more than temporary issues as a kid and even just not being able to keep up was rough (it didn't help that it was assumed more that I was lazy or faking than that there was an actual physical issue). It may also be worth looking at some of the family activities and adapting to slightly less active ones so that she doesn't feel left out. I'm not saying stop all athletics or anything, but make sure that there are also family activities that are more sedate and that those are shown as being just as important and fun as the physically active ones. There's no shame in having a physical disability. It's something that's different, but doesn't make her less of a person and she may need outside reinforcement to remember that (especially because so much of the world subtly suggests the opposite).

ETA: One thing I learned when my physical problems started to really become a problem as a teenager and then in trying to get a diagnosis as an adult is that many things get classified as "growing pains" that aren't. I've even read a couple articles that have said point blank that anything called "growing pains" is being falsely labeled because growing shouldn't hurt. Certainly once I read descriptions of what growing pains were supposed to be like I knew that what I'd been told were growing pains weren't. Growing pains should only be muscular and really only occur in late afternoon/evening, and be more of an ache/sore than any sort of sharp pain from my understanding. The idea is that it has to do with muscle fatigue. My "growing pains" were often in the morning, usually sharp, and sometimes joint rather than muscular. (I have a genetic condition that causes my joints to hyperextend and dislocate.)

 

[kristenrice]

There is no place to sit while waiting for a ride at WDW if you don't have a wheelchair or stroller. It's not a matter of getting a GAC, the seats just don't exist. Also the majority of walking/standing is between rides and there seem to be fewer and fewer benches at WDW as time goes on. Despite the fact that it would be a fight, for places like WDW I'd suggest using either a "stroller as a wheelchair" GAC or renting a pediatric wheelchair. At 7 quite a few kids use strollers at WDW who wouldn't at home (or most other places) so she won't stand out, but as she gets older, the pediatric wheelchair may be a better option. I know you'd have to have the fight with her, but she is old enough to have it explained to her that doing this now will prevent problems down the road (not to mention prevent more pain). WDW is honestly one of the best places to use a mobility aid, as well. She's not going to be happy about it either way, but considering it's hard to walk less than 6 miles in a day at WDW, it's something you might have to insist on. You really can point out that if she uses the mobility aids now, it should hopefully prevent her having problems as she's older. If she doesn't use them, she could make it even harder for herself long term and not be able to get back to the activity levels she loves.

I don't have experience with Osteochondritis Dissecans, but I do have a condition that got blamed on "growing pains" as a kid (and that involves severe knee problems). I'd suggest direct her exercise activities towards things that are low impact. I don't know what her doctor would think about bike riding with her knees, but swimming (other than breast stroke) is a great low-impact exercise. If you have access to a pool or can find a local swim team, that may be a good direction for her. I'd explain to the doctor that she very much enjoys being physically active and you can't just direct her to more sedate hobbies. It's also worth asking if there's physical therapy or something else she can do. If you aren't satisfied by this doctor, don't be afraid to get a second opinion. I'd also highly suggest getting her some therapy to deal with this since it looks like it's going to continue to be a on-going problem. (I'm assuming based on how you've posted that while her symptoms are such that she's weight-bearing, she's still in some pain.) It sounds like your entire family may be quite active and it is hard as a kid to deal with not being able to do what everyone else is doing. My family didn't recognize that I had more than temporary issues as a kid and even just not being able to keep up was rough (it didn't help that it was assumed more that I was lazy or faking than that there was an actual physical issue). It may also be worth looking at some of the family activities and adapting to slightly less active ones so that she doesn't feel left out. I'm not saying stop all athletics or anything, but make sure that there are also family activities that are more sedate and that those are shown as being just as important and fun as the physically active ones. There's no shame in having a physical disability. It's something that's different, but doesn't make her less of a person and she may need outside reinforcement to remember that (especially because so much of the world subtly suggests the opposite).

ETA: One thing I learned when my physical problems started to really become a problem as a teenager and then in trying to get a diagnosis as an adult is that many things get classified as "growing pains" that aren't. I've even read a couple articles that have said point blank that anything called "growing pains" is being falsely labeled because growing shouldn't hurt. Certainly once I read descriptions of what growing pains were supposed to be like I knew that what I'd been told were growing pains weren't. Growing pains should only be muscular and really only occur in late afternoon/evening, and be more of an ache/sore than any sort of sharp pain from my understanding. The idea is that it has to do with muscle fatigue. My "growing pains" were often in the morning, usually sharp, and sometimes joint rather than muscular. (I have a genetic condition that causes my joints to hyperextend and dislocate.)

Thank you for your thoughtful response. DD has actually started taking some yoga classes with me. I'd never done them before but her doctor said that it would be a nice, low-impact exercise for her. We just have to watch some of the poses that stress her knee joint. She has been to two classes so far and she really likes it. The doctor also said that bicycling and swimming would be perfect for her as well.

I am really looking forward to meeting her doctor next week. He is a pediatric sports medicine specialist so I know he will have some insight to what the best options will be going forward. Fortunately, our next trip to WDW isn't until next fall so there is a good chance that DD's knee may have already begun to heal and mobility won't be an issue. She will be 9 at that time so a stroller will certainly be out of the question.

 

[kylieh]

My DD is almost 11 and has OCD.

Here is some of our story. DD started having problems around 6 or 7, but getting someone to believe there was an issue or something other than growing pains was quite difficult. Then by complete coincidence, at our family doctor DD's knee "locked" and she fell. It was at that stage the Dr finally believed there was something wrong - at this stage we had been to physios, podiatrists, muscle drs, neurologist to rule out Cerebral Palsy (there is/was other symptoms), and quite a few others. Even her pediatrician couldn't work it out.

The family Dr sent us for a MRI, and it was found.

This was 2 years ago. We were sent to a Pediatric Orthopedic Surgeon, did more X-rays, said no impact sports, exercise bike, gentle yoga only. DD also has hyperjoint mobility which DD's new sports muscle Dr believes to be a co-related diagnosis, so that may be worth checking out. Our 3 months of no-impact has turned into 2 years, our surgeon said as long as she wasn't getting worse he didn't want to do surgery.

We spend a lot of time in physio to build up her muscles to stop them wasting (Distrophy) which is quite common as no exercise is going on.

DD's next xray is in October and symptomatically she is the best she has been in years, I believe at least the knee has finally cleared up, or will be close.

On Disneyworld, last trip DD was 9 1/2. We hired a wheelchair. We had it waiting at the room when we arrived. She used it a lot, perhaps 75% of the time in the parks. You won't need a GAC with a chair. And sometimes your DD will be able to walk, which is great, but you don't want her to be in any pain. There are pediatric wheelchairs that you can rent offsite.

If there are any signs of it, or your daughter is tiring easily, it is truely worth getting.

Our next trip is in December to Disneyland. At this stage I think DD is now strong enough to go without a wheelchair if we take it easy, but I won't hesitate at all to hire one if there are signs of pain or soreness.

 

[kristenrice]

Well, after the 3 months of no-impact, DD's lesion went from stable to unstable. There was evidence of increased joint effusion so the doctor recommended surgery. On Jan. 23, they drilled 6 holes through the lesion and into the bone to try and get the blood flow restored to the lesion. DD has been non-weight-bearing since then. She has no bandage or immobilizer in place because they want her to bend and move her leg, but not put any weight on it. She has become very adept at hopping around on one leg. Her balance is remarkable. She has crutches for use at home and when we go out for short trips. For school, we have her in a wheelchair because the temptation to put that leg down is just too great. Her classmates take turns being her "special helper" for the day. She has to stay inside for recess so her "special helper" keeps her company. On March 12, she has her follow-up x-rays to see if the surgery was successful. She has been almost completely pain-free since the surgery. In fact, she could have probably gone to school that afternoon.

The next step is to make sure that her knee is completely healed and then she wants to start training for her May 2015 Expedition Everest Challenge. We're praying that she does not develop the same problem in her other knee.