Anyone have a child with Severs Disease?

[left210]

Anyone have a child with Severs Disease and been to WDW? DS inflammation was pretty severe last fall and was taken out of all sports and PE in school last fall trying to get the inflammation down. He is doing fairly well right now and only has issues if he does something with the pounding motion on his heels. I am concerned about all the walking at WDW. We are going in one week. I do plan on taking ice packs and he will wear his shoes that have custom inserts. Anyone had experience with this at WDW?

 

[LMC]

YES! DD has had it for 2 years now. It flares up with activity so WDW is a challenge. Last May she had to use a wc for a couple of days. She also took her boot and used ace bandages on some days. Of course we used ice and her medications to help with the pain. You will need to plan on having to treat a flare up.

 

[left210]

She had to use a wheelchair at WDW? What kind of boot does she use? So far our son has only had to use the custom inserts, ice and restrict activity and do stretching exercises. I am a little fearful thinking about all of the walking at WDW. I considered asking for a GAC pass but not sure if that would be helpful. The only thing I was thinking it would be helpful for is if they could accommodate him if he has a flare up so that he doesnt have to stand during long ride waits but we would still have alot of walking around the parks. Do you wrap your daughters feet with ace bandages in the morning before going to the parks? How old is your daughter?

 

[SueM in MN]

She had to use a wheelchair at WDW? What kind of boot does she use? So far our son has only had to use the custom inserts, ice and restrict activity and do stretching exercises. I am a little fearful thinking about all of the walking at WDW. I considered asking for a GAC pass but not sure if that would be helpful. The only thing I was thinking it would be helpful for is if they could accommodate him if he has a flare up so that he doesnt have to stand during long ride waits but we would still have alot of walking around the parks. Do you wrap your daughters feet with ace bandages in the morning before going to the parks? How old is your daughter?

WDW's suggestion for people who are worried about walking and standing in lines is to use a wheelchair. One of the reasons is that walking in line is just a small portion of the walking involved in a day at WDW. Most guests walk between 6 and 9 miles a day (some up to 12) and a lot of that walking is outside of the lines. Just walking around World Showcase at Epcot is over 1.2 miles!

There is more information about Guest Assistance Cards in post 6 of the disABILITIES FAQs thread. You can find that thread near the top of this board or follow the link in my signature.

GACs are not passes, they are just cards that tell a little about the accommodations that a person with a disability needs. In your child's situation, a GAC is probably not going to be that helpful. GACs don't shorten the distance walked and the only way to assure he has somewhere to sit while waiting is to bring a wheelchair into line with you. GACs are not needed to bring a wheelchair or other mobility device in line; they are more for things that CMs can't see.
Also, there are quite a few attractions that include standing in one spot for a while that is part of the attraction, so a GAC won't do anying for those. There is a link to a past thread about rides with a wait and no place to sit in the disABILITIES FAQs thread post about GACs ( post 6) and also in post 3.

Some people get a wheelchair and just park it in an area then walk around the area and use the wheelchair again to get to the next area.

 

[Singledad]

She had to use a wheelchair at WDW? What kind of boot does she use? So far our son has only had to use the custom inserts, ice and restrict activity and do stretching exercises. I am a little fearful thinking about all of the walking at WDW. I considered asking for a GAC pass but not sure if that would be helpful. The only thing I was thinking it would be helpful for is if they could accommodate him if he has a flare up so that he doesnt have to stand during long ride waits but we would still have alot of walking around the parks. Do you wrap your daughters feet with ace bandages in the morning before going to the parks? How old is your daughter?

the GAC cannot really do that, but a wheelchair can. I know it seems like it would be more work to have the wheelchair, and it may feel like 'I don't really need this' but actually you DO. having a wheelchair or ECV means he will always have somewhere to sit, and if he does start having problems, he can restrict his walking and ride a little. I would look into renting from somewhere offsite as it is cheaper in the long run, but I also suggest reading the FAQ stickyed at the top of this board.

also, where is figment or whoever it is that has the great response about the questions, and the other response about asking about a point about a mile away from home...

 

[SueM in MN]

the GAC cannot really do that, but a wheelchair can. I know it seems like it would be more work to have the wheelchair, and it may feel like 'I don't really need this' but actually you DO. having a wheelchair or ECV means he will always have somewhere to sit, and if he does start having problems, he can restrict his walking and ride a little. I would look into renting from somewhere offsite as it is cheaper in the long run, but I also suggest reading the FAQ stickyed at the top of this board.

also, where is figment or whoever it is that has the great response about the questions, and the other response about asking about a point about a mile away from home...

The mile away from home idea was mine to start with, so I will mention it -
Pick a place about a mile from your house ( or 2 miles, even better). It needs to be a place your child is familiar with so he can picture it easily. Then ask if he could walk there from home. If he says he could, ask if he could walk there AND back. At that point, most people will look at you like you are nuts and say that would be too far. If he thinks he could walk there and back, ask about doing that twice in a row. At 4 miles total, he wouLd have only walked about 1/2 the distance the average person walks a day in WDW. (if your child is young, this may still be an important mental picture for you to look at to help you see what your child needs).

I also want to mention that the parks and most of the offsite rental companies will not rent an ECV to be used by a child under 18. Randy's will sometimes rent for an older teen, but they deliver directly to the person and do reserve the right to not rent if they don't feel the child is mature enough when the ECV is delivered.
There is information about renting wheelchairs in post 2 of the disABILITIES FAQs thread.

 

[left210]

Thanks everyone. It looks like I have a little more research to do. He has been doing so well with it recently compared to a few months ago that I hadnt thought too much about it but now realize I need to be prepared. I think I will figure out who I would need for a wheelchair and then if we need one be prepared to call and get it ASAP. It is hard to consider a wheelchair when you do not think of your child needing one but I do realize that WDW walking is way more than he has ever experienced since having this condition.

 

[LMC]

Yes, she did use a wc for a couple of days but we were there for over a week so the walking took its toll. She has a hard shell boot that goes up about mid-calf. We would wrap her foot daily with the ace and she progressed to the boot then the wc. We have tried a few different heel inserts but they don't help. We iced it down every evening. She is 12 yo and has also now developed plantars faciatis in the other foot so activities are really fun with her (ha ha ha). There was no need for the GAC as she could stay in the chair thru most of the queues.

She had to use a wheelchair at WDW? What kind of boot does she use? So far our son has only had to use the custom inserts, ice and restrict activity and do stretching exercises. I am a little fearful thinking about all of the walking at WDW. I considered asking for a GAC pass but not sure if that would be helpful. The only thing I was thinking it would be helpful for is if they could accommodate him if he has a flare up so that he doesnt have to stand during long ride waits but we would still have alot of walking around the parks. Do you wrap your daughters feet with ace bandages in the morning before going to the parks? How old is your daughter?

 

[left210]

Yes, she did use a wc for a couple of days but we were there for over a week so the walking took its toll. She has a hard shell boot that goes up about mid-calf. We would wrap her foot daily with the ace and she progressed to the boot then the wc. We have tried a few different heel inserts but they don't help. We iced it down every evening. She is 12 yo and has also now developed plantars faciatis in the other foot so activities are really fun with her (ha ha ha). There was no need for the GAC as she could stay in the chair thru most of the queues.

Thank you so much for sharing your experience with me. I have talked to my husband and we are prepared to get him a wheelchair if necessary and will plan to tape in the mornings and ice his heels every night. Have you ever tried the KT tape? Fortunately for us the heel inserts do help him but he still has inflammation when he overdoes it but not like it used to be. We just want to have an enjoyable vacation and for him to be as pain free as possible. We really do not want to get it inflammed to the point of the severe restrictions he had last year because that would not be a fun way to start summer. Sorry to hear your daughter has now developed plantar faciatis in her other foot. It is so hard to see your kids have to deal with these things instead of just being kids. Have you tried custom molded inserts? We tried the over the counter ones from the running store but they did not help but the custom ones do help him. They are pretty expensive but our insurance paid for them. I only wish I had bought the insurance on them for $70 because he has already outgrown them but we still use them. I thought $70 sounded high for the insurance but I guess not for $450 inserts. Now we have to wait another year until insurance will replace them.

 

[LMC]

Maybe our insurance would pay for the inserts since she has the additional diagnosis. They would not cover them with just the severs but I work in a hospital now and have better insurance. She used a cream called Pain Vanish and she loves it. She ran out and we can't find anything comparable. It is all natural and my source is no longer available. I do know it is all natural so maybe I'll try the local health food/drug store.