Kohlers Disease

WDWRookie2009

Mouseketeer
Joined
Feb 16, 2009
My 12 year old son has Kohlers. He was diagnosed at age 6. Doctors thought by 9 he would be better but unfortunately he was not. He has spent a good part of the last 6 years in walking boots- soft casts and even a wheel chair at one point. Unlike most cases he has it in both feet. Right is the worst as it is the foot bone that collapsed.

We have done Disneyland several times the past 6 years with lots of breaks , ice soaks and pain meds. However Disneyworld is a whole other ball game. Since walking and standing on his feet cause them to swell and hurt we are planning on rope drops and fast passes to minimize time he has to wait in line and so forth. I have been reading up on DAS but just don’t know what to do.

Thank you all who took the time to read my novel lol.
 

lanejudy

Moderator
Moderator
Joined
Oct 27, 2011
Have you used or needed DAS at DLR? It generally won’t be granted for a mobility/stamina need. A wheelchair or other mobility device is recommended. WDW ismich more spread out than DLR, with the average guest walking 6-10 miles. If your son has other needs, you can request a DAS.

Enjoy your vacation!
 

WDWRookie2009

Mouseketeer
Joined
Feb 16, 2009
Thank you for your response !! :)

No DAS. We often just start out with him walking. Then go back to hotel, RICE for a bit and then go back with a wheelchair (which he hates but I make him). Last time we were at disneyworld (10 years ago) I remember the amount of walking was at least double if not more than DLR. We will most likely have him in his wheel chair but maybe there are more tips (shortcuts, best rest areas, tips on touring styles, etc) out there that we can use since his mood drastically changes when we make him use the chair and the last thing I want is to damper his mood.
 
  • gap2368

    DIS Veteran
    Joined
    Feb 27, 2015
    I really can not see the DAS helping as he really need to cut down on his walking standing, and the DAS does not do either of those. the few benches at Disney have been disappearing so setting can be hard to come by. Some lines even FP are very long ( TSM, soring, come to mind)

    A few tips have you tried touring planes yet? this can help with where to go and you can set it so you are not crossing back and forth in the parks.

    first aid will be a good place to go for RICE.

    As out @mamabunny would say tell him a wheelchair is just a tool for him to have a good time just like someone that sucks at spelling use spell check, someone that has a hard time seeing use glasses, or hard of hearing, hearing aid, these like his wheelchair are tools so that someone with a different ability can do something easier /longer. Ask him if he would rather spend time at the hotel/ first aid in pain or would he rather be out in the park riding rides and having fun? Let him know the chance of someone seeing him that he knows ( or really seeing anyone besides the people he is with) is slim not none and slim just left the room. You could buy something for him to put on his chair I have seen some very cool chair at Disney but you could let him have some fun with it.
     

    Hoodie

    <font color=purple>Going to BC and GF with one wee
    Joined
    Jun 3, 2008
    The entrances to the parks from Disney transportation are pretty far at WDW. What you could do is take the wheelchair with you and park it while you do different sections. That way you have it with you if he needs it, but he doesn't need to rely on it all the time. DAS is difficult to say. At WDW you need to go to the ride to get the return time, so there tends to be a lot more walking back and forth, especially to rides that are out of the way. Someone in your party can do that for him, but it's still a lot more walking than in Disneyland. There are also some really fun hills, particularly in Animal kingdom.

    For size comparison and how your day may go based on your DL experiences, here is the list of the size of Disney properties. Note that although AK is the largest, a lot of that is the Safari ride and not walking areas:


    1. Disney's Animal Kingdom - 403 acres
    2. Epcot - 300 acres
    3. Tokyo DisneySea - 176 acres
    4. Disney's Hollywood Studios - 135 acres
    5. Disneyland Paris - 126 acres
    6. Tokyo Disneyland - 115 acres
    7. Magic Kingdom - 105 acres
    8. Disneyland - 85 acres
    9. Disney California Adventure - 72 acres
    10. Hong Kong Disneyland - 68 acres
    11. Walt Disney Studios, Paris - 62 acres
    As you can see, the parks themselves are a much larger area than in California, so be prepared!
     

    seven dwarfs

    DIS Veteran
    Joined
    Jul 8, 2006
    My 12 year old son has Kohlers. He was diagnosed at age 6. Doctors thought by 9 he would be better but unfortunately he was not. He has spent a good part of the last 6 years in walking boots- soft casts and even a wheel chair at one point. Unlike most cases he has it in both feet. Right is the worst as it is the foot bone that collapsed.

    We have done Disneyland several times the past 6 years with lots of breaks , ice soaks and pain meds. However Disneyworld is a whole other ball game. Since walking and standing on his feet cause them to swell and hurt we are planning on rope drops and fast passes to minimize time he has to wait in line and so forth. I have been reading up on DAS but just don’t know what to do.

    Thank you all who took the time to read my novel lol.
    They make an old fashion ice bag. (English ice cap ice bag) Its cloth with the round tip. I got one recently at rite aide. It is very easy to fill with the open karts that sell sodas because they have ice in the coolers. It was a life saver for us when I went 3 days after emergency surgery on my arm. It is easy access to ice at all times.

    Also I would request the Das. I do think this would help you along with fast passes.

    Good luck on your trip. While I would have rather gone when I was more recovered. We made the best off it and I got to enjoy Disney in a different way.
     

    OurBigTrip

    DIS Veteran
    Joined
    May 27, 2013
    I would look at renting a wheelchair offsite for use while you're there - you can get one that is sized for a child, and save money to boot.

    Unless your son has other issues, it's highly unlikely he would be granted a DAS.
     
  • bababear_50

    DIS Veteran
    Joined
    Feb 5, 2007
    My 12 year old son has Kohlers. He was diagnosed at age 6. Doctors thought by 9 he would be better but unfortunately he was not. He has spent a good part of the last 6 years in walking boots- soft casts and even a wheel chair at one point. Unlike most cases he has it in both feet. Right is the worst as it is the foot bone that collapsed.

    We have done Disneyland several times the past 6 years with lots of breaks , ice soaks and pain meds. However Disneyworld is a whole other ball game. Since walking and standing on his feet cause them to swell and hurt we are planning on rope drops and fast passes to minimize time he has to wait in line and so forth. I have been reading up on DAS but just don’t know what to do.

    Thank you all who took the time to read my novel lol.
    Hi WDWRookie2009
    I was wondering if your son has ever driven a kids electric wheelchair,,and if this independence would help him?
    I work with kids that have special medical needs and many of them 6 years and up drive electric wheelchairs. I would consider at least a rollator so that I could have the weight taken off my feet when needed,,unfortunately WDW has very few spots where people can just sit for a break.
    I would have a look at the first Aid station in each park on a map and maybe consider some breaks there.
    It can't hurt to explain your sons needs ( frequent breaks in an alternate location with his feet elevated above chest etc). and see if a DAS would be granted.
    Start off at Magic Kingdom as it is the smallest of the Theme Parks in WDW,,Animal Kingdom has alot of ups and downs with a manual wheelchair.
    Best wishes in your search for ideas and answers and I hope you guys have a wonderful Holiday.
    Hugs
    Mel
     
    Last edited:

    Lilsia

    DIS Veteran
    Joined
    Feb 17, 2018
    I would definitely rent a wheelchair for him offsite so that you have the use of it the whole time. They will not give you a DAS for mobility issues. Also each park has a first aid where you can get ice packs if needed.
     

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