Child with MS

[tink&cinderella]

Hi

I am leaving with a friend to WDW on Friday. She has an 11 year old son who has MS - he is presently in the midst of an attack and presently his vision is impaired at 20/400 - In the past prednisone has cleared this up but this time it is not working and they think his vision loss is permanent. Other times the MS attacks affect his ability to walk.

He also goes for monthly chemotherapy to do something to his immune system ( I think level it to 0).

Presently, he is very moody - his mother refers to it as having PMS, has gained an awful lot of weight, is sun sensitive, can't see very well and is terribly impatient and depressed.( I understand that MS is not too commonly diagnosed in children)

Any suggestions how we can ensure that he gets the most of our trip??? We are going with another 9 year old boy and two 7 year old girls.

Thanks

I am wondering

 

[SueM in MN]

Hi

I am leaving with a friend to WDW on Friday. She has an 11 year old son who has MS - he is presently in the midst of an attack and presently his vision is impaired at 20/400 - In the past prednisone has cleared this up but this time it is not working and they think his vision loss is permanent. Other times the MS attacks affect his ability to walk.

He also goes for monthly chemotherapy to do something to his immune system ( I think level it to 0).

Presently, he is very moody - his mother refers to it as having PMS, has gained an awful lot of weight, is sun sensitive, can't see very well and is terribly impatient and depressed.( I understand that MS is not too commonly diagnosed in children)

Any suggestions how we can ensure that he gets the most of our trip??? We are going with another 9 year old boy and two 7 year old girls.

Thanks

I am wondering

MS is more common in adults, but there are some kids with it.
The symptoms you are mentioning ("PMS", weight gain, sun sensitive, impatience and depression) are side effects of Prednisone.

If he doesn't have a wheelchair, you could look into getting one for him to use (that way, he would not have to worry about navigating).
Getting one from one of the off-site companies will help because he would have it to use at the resort as well as at the parks. They do have a small number of pediatric wheelchairs and it might be good to look into one of them (unless he is a large 11 yr old, an adult wheelchair will be a little large for him). A pillow to place behind him would help so his knees end up closer to the edge of the chair may help.

A young friend of mine who has MS, suggested an 11 year old is probably very aware of not wanting to stand out or be looked at by others and may rebel at using a wheelchair. He suggested getting a cane or walking stick - even though the 11 yr old doesn't have (I think?) any problems with walking this time, a cane would help him to keep steady.

Four other things: sunscreen, water (lots of it), rest, hat(with a brim).
My friend said to make sure the 11 yr old carries water with him and drinks a lot. Dehydration can really make the MS symptoms much worse.

If you go to the parks as early as possible in the day, you will avoid most of the heat and the crowds and get to see the most with the shortest waits. That is true even during the busiest times. If you get there at opening, you ahould be able to get on some attractions pretty much walking right in. Later in the morning, when the park gets busier and it's hotter outside, you can go somewhere air conditioned inside (that would be a good time to go somewhere like Disney Quest or the arcade in the resort).

Also, check out some of the threads on this board that mention either "GAC" or "Guest Assistance Card"; those are requested from Guest Relations in any of the parks. There is also a recent thread about visual disabilities. Tell the CMs there the things that you mentioned in your post. Keep in mind that a GAC is not meant to shorten or eliminate waits in line, but may give a shaded, cooler place to wait (may, because just because you have a GAC doesn't mean the attraction has it available). Plus, the time you spend waiting in line is just a small part of a day at WDW. A lot of time is spent walking back and forth to get to things.