12 year old with SEVERE Osgood-Schlatters

[Lees3rwe]

Not sure if I posted this here or on another board... it's been a crazy few weeks!

My 12 (soon to be 13) year old was recently diagnosed with Osgood-Schlatters Disease in both knees (this is a defect in the growth plate that causes severe tendonitis type pain in the knee, specifically during the "growing years" when the bones are growing at a faster rate than the tendons).

He has had to quit soccer and is unable to participate very much during PE at school because his case is so severe. Ice, Advil, Rest and Physical Therapy is about all that you can do for it. The blessing is that they DO grow out of it (literally, when they stop growing!).

We had originally planned a Universal/LEGOLAND vacation for this summer, but he said he just knows he couldn't do all of that walking and that he would be miserable. We have never been to Universal or LEGOLAND, but we are Disney pros...

We are toying with the idea of renting a jr. wheelchair for him and using it as needed. I know that we would need to get the special card and everything too.

Just curious if anyone has dealt with Osgood-Schlatter at Disney and did you find a wheelchair rental to be the way to go.

Thanks for any advice!

 

[dawnball]

I don't have any experience with that particular disorder - but a wheelchair seems like a good answer. You can use a wheelchair at Legoland/Universal if you wanted, too! No special card needed at any of the three.

 

[SueM in MN]

I don't have any experience with that particular disorder - but a wheelchair seems like a good answer. You can use a wheelchair at Legoland/Universal if you wanted, too! No special card needed at any of the three.

As dawn all posted, you don't need any card to bring the wheelchair into lines with you.
Most lines are Mainstreamed, which means the regular line is accessible.

 

[splashmtnfan]

Those are fantastic for moving about and none of you will get overheated pushing the wheelchair.

 

[Neesy228]

Not sure if I posted this here or on another board... it's been a crazy few weeks!

My 12 (soon to be 13) year old was recently diagnosed with Osgood-Schlatters Disease in both knees (this is a defect in the growth plate that causes severe tendonitis type pain in the knee, specifically during the "growing years" when the bones are growing at a faster rate than the tendons).

He has had to quit soccer and is unable to participate very much during PE at school because his case is so severe. Ice, Advil, Rest and Physical Therapy is about all that you can do for it. The blessing is that they DO grow out of it (literally, when they stop growing!).

We had originally planned a Universal/LEGOLAND vacation for this summer, but he said he just knows he couldn't do all of that walking and that he would be miserable. We have never been to Universal or LEGOLAND, but we are Disney pros...

We are toying with the idea of renting a jr. wheelchair for him and using it as needed. I know that we would need to get the special card and everything too.

Just curious if anyone has dealt with Osgood-Schlatter at Disney and did you find a wheelchair rental to be the way to go.

Thanks for any advice!

Not any direct "been there" advice, but I had it as a child and when the pain was at its worst, I used compression-style knee braces and ice/heat...I would not have wanted to sit in a wheel chair at that age, but I suppose that you could use it as a last resort. Have you talked to your son about how he would feel about it? Maybe just some light days of touring instead and work around his comfort level? I would talk to him about what he thinks would be best. It does improve - I had good stretches and bad stretches through the teen years. It's tough at times though and I really feel for your DS. Swimming in the evenings will help ease the discomfort some too.

Good luck deciding and hang in there!

 

[KPeveler]

Just wanted to say that a 12 yr old would not be allowed to rent an electric scooter. Also, you would need to look at his size when renting a wheelchair - I know a lot of 12 yr old boys who do not need a jr wheelchair - the regular 16 inchers would be just fine. Whatever company you rent from should be able to give advice given his height.

 

[Lees3rwe]

Thanks for all of the replies, and Neesy- he does wear the compression bands on bad days (which, unfortunately, he has been having a lot of).

Maybe I'll check into a Disney Cruise instead!

 

[KPeveler]

Thanks for all of the replies, and Neesy- he does wear the compression bands on bad days (which, unfortunately, he has been having a lot of).

Maybe I'll check into a Disney Cruise instead!

Getting a kid to use a wheelchair can be hard, but if you have it there, if he is in enough pain he may be more open to using it.

When he is not using it, you can use it to carry all the stuff we all inevitably carry in the parks.

In fact, if he pushes it, it may act like a walker and help take the weight off his legs. It may increase his time walking without pain.

You can always park the wheelchair in stroller parking when you go on rides.

Also speak to his doctor about the trip. He may want to increase, add, or change meds, just for the duration of the trip to make him more comfortable.

 

[Denine]

DD, 10, also has this. She wears knee braces when it is bad. I give her aleve too. It was really painful in the begining. Her poor little knees were so swollen and painful to the touch. She did manage to continue playing softball through the pain. It has calmed down and she is much better right now. I am sure it will flare up again when she hits another growth spurt.

We did go to WDW during the painful period. She wouldn't wear the knee braces. I am guessing she didn't want anyone to see them. Her knees did hurt a bit more, but we took breaks.

Good luck!

Hope his knees feel better soon!

 

[Lees3rwe]

Denine- Did her first flare seem to be the worst? I am hoping that it will ease up and each additional episode will not be as bad.

Does she have it in both knees? His look pure red and angry some days... it is awful.

 

[Mama Who]

Thanks for all of the replies, and Neesy- he does wear the compression bands on bad days (which, unfortunately, he has been having a lot of).

Maybe I'll check into a Disney Cruise instead!

Maybe a land and sea package? I'm sorry, I can offer no real advice. My husband had O-S, but it was before we met.

 

[SharkyGoddess]

Not sure if I posted this here or on another board... it's been a crazy few weeks!

My 12 (soon to be 13) year old was recently diagnosed with Osgood-Schlatters Disease in both knees (this is a defect in the growth plate that causes severe tendonitis type pain in the knee, specifically during the "growing years" when the bones are growing at a faster rate than the tendons).

He has had to quit soccer and is unable to participate very much during PE at school because his case is so severe. Ice, Advil, Rest and Physical Therapy is about all that you can do for it. The blessing is that they DO grow out of it (literally, when they stop growing!).

We had originally planned a Universal/LEGOLAND vacation for this summer, but he said he just knows he couldn't do all of that walking and that he would be miserable. We have never been to Universal or LEGOLAND, but we are Disney pros...

We are toying with the idea of renting a jr. wheelchair for him and using it as needed. I know that we would need to get the special card and everything too.

Just curious if anyone has dealt with Osgood-Schlatter at Disney and did you find a wheelchair rental to be the way to go.

Thanks for any advice!

First of all, my DEEPEST sympathies for your son. My daughter developed OS in the 7th grade and at the age of 17 she is still suffering from it on a daily basis. She had to quit XC and it devastated her. She too wears knee races and does all of the ice/heat and OTC anti-inflammatory. Sadly a lot of kids develop arthritis and other knee/leg problems.

Secondly, I have seen kids under the age of 16 who have used the ECVs. Check into renting one from one of the outside companies for him so he can be comfortable and you guys can avoid getting tired from pushing a wheel chair. I would also suggest allowing him to use one prior to going to get a feel for it. We are returning to Fl in the Fall and just may have to get one for our daughter this round.

Wishing you guys a happy trip!

 

[Mama Who]

Secondly, I have seen kids under the age of 16 who have used the ECVs. Check into renting one from one of the outside companies

Those may be personal scooters. I know many of the outside agencies alson have a minimum age of 18 or 21.

 

[Lees3rwe]

Oh Sharky... I am so sorry that your daughter is still suffering for that long.
I think our Ortho was trying to prepare us that my son has a REALLY bad case.

I had never even heard of this before he was diagnosed and it has really been hard on him.

Thanks again, so much, for all of the feedback and suggestions.

 

[Denine]

Denine- Did her first flare seem to be the worst? I am hoping that it will ease up and each additional episode will not be as bad.

Does she have it in both knees? His look pure red and angry some days... it is awful.

We just figured out she had it in January. So far, it has been her only flare. Yes, it is in both knees. She plays softball and is a pitcher. The knee of her landing leg seems to be worse, and I have a different brace for when she pitches. Both knees are fine right now though. My husband had it when he was a kid. His knees have never been right. I hope DD won't have problems for life with her knees. She already has to deal with having celiac disease.

 

[SueM in MN]

Those may be personal scooters. I know many of the outside agencies alson have a minimum age of 18 or 21.

There are kids who have their own personal ECV because they can walk, but have a condition that makes walking long distances impossible.
I have seen kids at WDW using personal ECVs and I have known some kids with conditions like arthritis, cerebral palsy and muscular dystrophy who had one.
It's much easier to transport an ECV than a power wheelchair, so someone who needs a power mobility device may choose an ECV.

Most of the rental companies won't rent for use by a younger child. I know Randy's will rent for older teens on a 1:1 basis - they determine when they deliver the ECV whether or not the child is mature enough. Not sure how young they will go, but I have always heard older teens.

The other issue besides age is size. The rental companies are set up for rental by adults and may not have an ECV that is/can be adjusted for use by a child.
So, it is worth calling, but be prepared that many of the offsite companies will not rent for use by younger people.

 

[Piper]

Just wanted to add that you need to be very alert to other people to use an ECV. People stop suddenly in front of you, walk across your path, etc. You don't get to enjoy the ambiance of the parks because you need to be constantly focused on the other people and prepared for them to dart in front of you.

If you are not used to whatever ECV you have, it is more difficult. I know because 2 years ago, I "upgraded" my ECV to a different model from the same manufacturer. There were enough differences, that I made mistakes for a few weeks while I was adjusting. Fortunately, I was just at home, getting my mail, etc. And I was very "used" to my former ECV since I had used it for years! I thought at the time that I was so glad I wasn't at WDW during the learning time!

Although you lose a little independence with a WC, it is much more enjoyable. And you probably wouldn't want your 12 year old to go off without the group.

 

[stitchlovestink]

Just wanted to add that you need to be very alert to other people to use an ECV. People stop suddenly in front of you, walk across your path, etc. You don't get to enjoy the ambiance of the parks because you need to be constantly focused on the other people and prepared for them to dart in front of you.

If you are not used to whatever ECV you have, it is more difficult. I know because 2 years ago, I "upgraded" my ECV to a different model from the same manufacturer. There were enough differences, that I made mistakes for a few weeks while I was adjusting. Fortunately, I was just at home, getting my mail, etc. And I was very "used" to my former ECV since I had used it for years! I thought at the time that I was so glad I wasn't at WDW during the learning time!

Although you lose a little independence with a WC, it is much more enjoyable. And you probably wouldn't want your 12 year old to go off without the group.

Bolding is mine....
That is clearly a matter of opinion. I develope adhesive capsulitis in my shoulder and don't have the strength, nor should I use my shoulder to the extent to 'wheel' myself arould the park in a wheelchair (at the advice of the Dr's). If you are not used to using a wheelchair on a regular basis, it is very tiring to your upper body!! So I disagree, and say you lose a TREMENDOUS amount of independence.

My older DD had this is. She is now 6'1"! DH is 5'9.5" & I am 5'7.5". LOL!!! People can't believe she is ours. But anyway, it was pretty bad. Her knees still bother her on occasion. I think when you have a bad case, it never fully goes away. We had never heard of it until DD was diagnosed and then some people at school (HS PE teachers) accused us of making it up! LoL
DD was a tough cookie and just worked through it. She walked thru the pain. I think the good side is at Disney if you mix things up, she should be able to get a bit of a rest at times sitting watching shows and such, KWIM? Best of Luck to you!! Its not a fun situation.

 

[Piper]

Bolding is mine....
That is clearly a matter of opinion. I develope adhesive capsulitis in my shoulder and don't have the strength, nor should I use my shoulder to the extent to 'wheel' myself arould the park in a wheelchair (at the advice of the Dr's). If you are not used to using a wheelchair on a regular basis, it is very tiring to your upper body!! So I disagree, and say you lose a TREMENDOUS amount of independence.

I am not talking about the child trying to wheel himself. I think that is difficult for even experienced WC users. I don't have enough upper body strength for this myself. The parents will probably push the child.

 

[stitchlovestink]

I am not talking about the child trying to wheel himself. I think that is difficult for even experienced WC users. I don't have enough upper body strength for this myself. The parents will probably push the child.

So then as I previously stated...they would be losing a tremendous amount of independence in a wheelchair vs ecv. If they are responsible enough (and only the parent can decide...and when mine were at age 12, they stayed home alone!!) they may very well want to go off and do something on their own. In my case, there are a few rides that my kids want to do that I simply can't. So they would 'need' that indepedence. Each family's needs/dynamics are different. But it is not unreasonable for a responsible well behaved 12yo to separate from their family in WDW under the right circumstances.