Just wanted to share - daughter's newly diagnosed EDS

happymommy

DIS Veteran
Joined
Jan 8, 2006
Hi, All!
I've been to WDW so many times, before kids and then after kids. We all love it so much, but my DH and DS have grown away from it lately :(
I find so much useful information here, and just wanted to "talk"!
My daughter used to always get more tired than most kids get at Disney (well, we do walk a LOT!). I last brought a stroller to share when she was in first grade, and then a year or two later (I forget) ended up renting one for a day for her to nap in.
Long story short, we are finding (still waiting on the final diagnosis from the pediatric rheumatologist) that she has a connective tissue disorder. Her joints ache, and she fatigues easily, has skin that stretches more than normal, has stretch marks on her legs (and chest), gets headaches, and throws up easily and often. Fun times!
Last trip was a week ago, and after one day, she asked for a wheelchair rental. I knew nothing about them, but gave it a shot and rented one (ended up renting for 4 of our days, the long walking ones). Wow, what a gift from above! She could rest her legs, and still do everything she wanted! Most lines we could go through with it too!
If any other parents have kids like her, what she MAY have is Ehler Danlos Syndrome. In any case, it could be WAY worse!
We actually just planned another mom-daughter trip for 10 nights in August, and I already know we'll either rent chairs at the parks, or ask at Pop (where I booked us - she's always wanted to stay there!) if they have a loaner to really minimizer her walking.
Any advice is totally welcome! We did get her the new card (first day - she said she knew she couldn't stand long, so we could get return times and let her rest instead), and that worked out very well! It's not like we had to do every ride; we've been many times so a few things a day was fine!
 
Glad the use of the chair helped your daughter... :) :) hope your next trip is even better... from what Ive heard renting off site is better... 1 Because you can take it back to your hotel , getting back to your hotel can be killer.. and 2.. depending on where you rent from ,, its cheaper..
 
Glad the use of the chair helped your daughter... :) :) hope your next trip is even better... from what Ive heard renting off site is better... 1 Because you can take it back to your hotel , getting back to your hotel can be killer.. and 2.. depending on where you rent from ,, its cheaper..
I'm looking into that for sure! Thanks! I know Pop is a kind of big resort, so it may be nice to have it all the time!
She can walk at home, but Disney is another story. I used my iPhone 6 health app, and we walked close to 10 miles a day.
 
I second the off site rentals, that trip to transportation, car, bus, boat or monorail can be a killer and that does not count size of resort
 
I third the off-site rental. Any loaner a resort may have will likely not be in the best condition.
 
Thanks - I'm going to definitely do that! I figure we'll want to go over the bridge to AOA and walk around there (their breakfast menu sounds really good, so for breakfast one day would be fun). In the heat of August it would be nice to have a chair at the resort!
 
I love Disney-it's set up so ican sit back and be entertained with my family-as an EDSer with severe hand and shoulder issues its one of the few things I can "do"! Being pushed in a chair allows me to last several hours before the fatigue gets to be too much.
There's an eds thread on the disabilities community board if you'd like to check it out :goodvibes
 


I love Disney-it's set up so ican sit back and be entertained with my family-as an EDSer with severe hand and shoulder issues its one of the few things I can "do"! Being pushed in a chair allows me to last several hours before the fatigue gets to be too much.
There's an eds thread on the disabilities community board if you'd like to check it out :goodvibes

Oh my gosh, THANK YOU!

I also found out on Craigslist that there are some nice wheelchairs nearby to buy for what I'd pay to rent one. I figured, it WON'T be our last trip, so it may be nice to have our own to bring from home!

Funny you mention shoulder - that was one of her main issues this trip. She thought it was her little backpack. Poor girl has been in bed since Thursday night with nausea - two meds from the GI doc aren't helping, so we can't wait for her rheumatologist appointment to see what they can do! She's had so many tests done.
 
ANother vote for off site rental, if you don't buy one. walker Mobility was great for me and I"m 5'1" 120 and I got the larger kids chair and it worked great.
 
@happymommy - our daughter has many orthopedic issues, and has long had her own "wheels". Buying a chair off of Craigslist can be great - just please remember a couple of things:

1. ALWAYS MEET IN A PUBLIC PLACE. Like, the parking lot of the Police Station. Not kidding. Seriously.
2. When it comes to used DME, do a bit of research before if possible. Ask for a model number - wheelchairs can weigh a lot, and so you want to find the lightest possible chair that will still be comfortable for her all day.
3. Sanitize the bejeebers out of any DME you buy on CL :::shudder:::
4. If you can find a used Ti-Lite, that would be awesome (Titanium chairs are strong and lightweight) and Ti-Lite chairs, though typically custom-fit, are really comfortable.
5. Purchase a new gel-pad or memory foam cushion for the chair. Our daughter swears by hers; it's expensive, but when you are sitting all day, it's important.
6. Let her decorate her chair! Our daughter's first chair had streamers and lights and SO MUCH GLITTER. OH THE GLITTER STICKERS. GLITTER STICKERS EVERYWHERE LOL But it was an extension of her, and so we got out the pink spray paint, and went to town!
7. Don't let anyone fool around with her chair - remind siblings, classmates, cousins, etc. that it's not a toy, it's her legs.
8. Check with your medical insurance provider regarding DME (Durable Medical Equipement) like wheelchairs first, to see if/what they will cover. Also, check locally with your church, the Shriners and/or Masons (often they have TONS of kid-sized wheelchairs, or will be able to help you source one). (Our daughter went to the Shriner's Hospital until she was 18, and we always donated her chairs back to the local Shrine Temple as she outgrew them).

You have a super attitude - and I promise you, as the mom of a well-adjusted (if I do say so myself! LOL) 21 year old, it makes a difference! We have always said at our house that "We will be positive until we just can't be anymore!" and "We will keep going until we just can't anymore, and then we will do something different!". It made a huge difference in her attitude growing up, and now as an adult. We disciplined her just like any other kid, and even though I sometimes got dirty looks at the store from other parents for taking away something she wanted... I didn't care. (Oh boy - just try taking a toy away from an adorable kid in a pink wheelchair. You will get side-eye like you won't believe, and more shade than you can imagine!) We didn't want her to grow up thinking that just because she uses wheels, she gets everything given to her.

It sucks - I won't lie. But just don't let it rule your world. Regardless of what the actual diagnosis is, just remember that we ALL have "something" "wrong" with us. My Mom was a Special Needs teacher, and she told me one time that EVERYONE HAS SOMETHING. Some people suck at math. Some people struggle with issues like Dyslexia. Other people need glasses, or hearing aids. And some people have bodies that just don't work they way we want them to. Use the tools at your disposal - whether it's a calculator to do math, or a wheelchair to supplement walking, and go on, and have an amazing life.

(((hugs)))
 
@happymommy - our daughter has many orthopedic issues, and has long had her own "wheels". Buying a chair off of Craigslist can be great - just please remember a couple of things:

1. ALWAYS MEET IN A PUBLIC PLACE. Like, the parking lot of the Police Station. Not kidding. Seriously.
2. When it comes to used DME, do a bit of research before if possible. Ask for a model number - wheelchairs can weigh a lot, and so you want to find the lightest possible chair that will still be comfortable for her all day.
3. Sanitize the bejeebers out of any DME you buy on CL :::shudder:::
4. If you can find a used Ti-Lite, that would be awesome (Titanium chairs are strong and lightweight) and Ti-Lite chairs, though typically custom-fit, are really comfortable.
5. Purchase a new gel-pad or memory foam cushion for the chair. Our daughter swears by hers; it's expensive, but when you are sitting all day, it's important.
6. Let her decorate her chair! Our daughter's first chair had streamers and lights and SO MUCH GLITTER. OH THE GLITTER STICKERS. GLITTER STICKERS EVERYWHERE LOL But it was an extension of her, and so we got out the pink spray paint, and went to town!
7. Don't let anyone fool around with her chair - remind siblings, classmates, cousins, etc. that it's not a toy, it's her legs.
8. Check with your medical insurance provider regarding DME (Durable Medical Equipement) like wheelchairs first, to see if/what they will cover. Also, check locally with your church, the Shriners and/or Masons (often they have TONS of kid-sized wheelchairs, or will be able to help you source one). (Our daughter went to the Shriner's Hospital until she was 18, and we always donated her chairs back to the local Shrine Temple as she outgrew them).

You have a super attitude - and I promise you, as the mom of a well-adjusted (if I do say so myself! LOL) 21 year old, it makes a difference! We have always said at our house that "We will be positive until we just can't be anymore!" and "We will keep going until we just can't anymore, and then we will do something different!". It made a huge difference in her attitude growing up, and now as an adult. We disciplined her just like any other kid, and even though I sometimes got dirty looks at the store from other parents for taking away something she wanted... I didn't care. (Oh boy - just try taking a toy away from an adorable kid in a pink wheelchair. You will get side-eye like you won't believe, and more shade than you can imagine!) We didn't want her to grow up thinking that just because she uses wheels, she gets everything given to her.

It sucks - I won't lie. But just don't let it rule your world. Regardless of what the actual diagnosis is, just remember that we ALL have "something" "wrong" with us. My Mom was a Special Needs teacher, and she told me one time that EVERYONE HAS SOMETHING. Some people suck at math. Some people struggle with issues like Dyslexia. Other people need glasses, or hearing aids. And some people have bodies that just don't work they way we want them to. Use the tools at your disposal - whether it's a calculator to do math, or a wheelchair to supplement walking, and go on, and have an amazing life.

(((hugs)))

Oh my gosh, THANK YOU, and Thank you ALL so much!

She got the diagnosis today, EDS. Lucky for her it's not severe (we think, LOL).

I appreciate the info on a lightweight chair (she'll really only need it for LONG walks, so I figure knowing what she has, it's best to have our own) and also on the chair pad. I'm going to call our insurance company - I know they cover a portion (if not all) for DME. I never thought of that!!!!!

We were so kicking ourselves this past trip that we didn't bring our leftover supply of glow sticks to decorate the rentals! It would make her visible (we stayed until almost midnight 3 or 4 nights at the MK - not like us, but with her being pushed it helped! We slept in!).

Thanks again! HUGS to you all!!
 
Oh my gosh, THANK YOU, and Thank you ALL so much!

She got the diagnosis today, EDS. Lucky for her it's not severe (we think, LOL).

I appreciate the info on a lightweight chair (she'll really only need it for LONG walks, so I figure knowing what she has, it's best to have our own) and also on the chair pad. I'm going to call our insurance company - I know they cover a portion (if not all) for DME. I never thought of that!!!!!

We were so kicking ourselves this past trip that we didn't bring our leftover supply of glow sticks to decorate the rentals! It would make her visible (we stayed until almost midnight 3 or 4 nights at the MK - not like us, but with her being pushed it helped! We slept in!).

Thanks again! HUGS to you all!!

Well, I'm glad to hear you have a diagnosis - as tough as it can be to hear it, at least you know what you are up against now!

We always "light up" our personal mobility devices (I use an ECV, and our daughter has her chair) when we are at WDW, or the state fair, at concerts, etc. I'm just a "safety first" kind of girl! I even put some battery operated skate board LED's under my ECV, and they make it "glow" - so it looks super cool, and helps with visibility! (I found them on Amazon)

LOL you aren't the only sleeper-inners - this last trip we slept in WAAAAAAAAY late, and then closed down MK, went to DTD and stayed 'till we couldn't anymore!

OH - one last tip! Get her a good pair of bike gloves if she is going to be doing a lot of "wheeling" but not using the chair on a daily basis. It will help prevent blisters. Also, she might want to work on improving her upper body strength, so she can be a bit more independent.

I hope you all have a blast on your next Mother-Daughter trip! Our trip last month was to celebrate our daughter's 21st birthday - it was just her and I - and she paid for the trip herself! She and I have gone to WDW three times just us two, and I cherish those memories every day!

Wishing you a Magical time at WDW! :)
 
@happymommy - our daughter has many orthopedic issues, and has long had her own "wheels". Buying a chair off of Craigslist can be great - just please remember a couple of things:

1. ALWAYS MEET IN A PUBLIC PLACE. Like, the parking lot of the Police Station. Not kidding. Seriously.
2. When it comes to used DME, do a bit of research before if possible. Ask for a model number - wheelchairs can weigh a lot, and so you want to find the lightest possible chair that will still be comfortable for her all day.
3. Sanitize the bejeebers out of any DME you buy on CL :::shudder:::
4. If you can find a used Ti-Lite, that would be awesome (Titanium chairs are strong and lightweight) and Ti-Lite chairs, though typically custom-fit, are really comfortable.
5. Purchase a new gel-pad or memory foam cushion for the chair. Our daughter swears by hers; it's expensive, but when you are sitting all day, it's important.
6. Let her decorate her chair! Our daughter's first chair had streamers and lights and SO MUCH GLITTER. OH THE GLITTER STICKERS. GLITTER STICKERS EVERYWHERE LOL But it was an extension of her, and so we got out the pink spray paint, and went to town!
7. Don't let anyone fool around with her chair - remind siblings, classmates, cousins, etc. that it's not a toy, it's her legs.
8. Check with your medical insurance provider regarding DME (Durable Medical Equipement) like wheelchairs first, to see if/what they will cover. Also, check locally with your church, the Shriners and/or Masons (often they have TONS of kid-sized wheelchairs, or will be able to help you source one). (Our daughter went to the Shriner's Hospital until she was 18, and we always donated her chairs back to the local Shrine Temple as she outgrew them).

You have a super attitude - and I promise you, as the mom of a well-adjusted (if I do say so myself! LOL) 21 year old, it makes a difference! We have always said at our house that "We will be positive until we just can't be anymore!" and "We will keep going until we just can't anymore, and then we will do something different!". It made a huge difference in her attitude growing up, and now as an adult. We disciplined her just like any other kid, and even though I sometimes got dirty looks at the store from other parents for taking away something she wanted... I didn't care. (Oh boy - just try taking a toy away from an adorable kid in a pink wheelchair. You will get side-eye like you won't believe, and more shade than you can imagine!) We didn't want her to grow up thinking that just because she uses wheels, she gets everything given to her.

It sucks - I won't lie. But just don't let it rule your world. Regardless of what the actual diagnosis is, just remember that we ALL have "something" "wrong" with us. My Mom was a Special Needs teacher, and she told me one time that EVERYONE HAS SOMETHING. Some people suck at math. Some people struggle with issues like Dyslexia. Other people need glasses, or hearing aids. And some people have bodies that just don't work they way we want them to. Use the tools at your disposal - whether it's a calculator to do math, or a wheelchair to supplement walking, and go on, and have an amazing life.

(((hugs)))

I hope you don't mind, but I would love to print out that last paragraph of your post. I can not tell you what an impact it had on me. I have needed a wheelchair/ecv since I was 13 and have had lots of medical issues. I always have felt "broken" from them (even now at 19) and reading that is the first time I have looked at myself in a different way. I'm good at math, not so much with walking. And that's okay. I have a tool to help me. Wow. Thank you.
 
Hi, All!
I've been to WDW so many times, before kids and then after kids. We all love it so much, but my DH and DS have grown away from it lately :(
I find so much useful information here, and just wanted to "talk"!
My daughter used to always get more tired than most kids get at Disney (well, we do walk a LOT!). I last brought a stroller to share when she was in first grade, and then a year or two later (I forget) ended up renting one for a day for her to nap in.
Long story short, we are finding (still waiting on the final diagnosis from the pediatric rheumatologist) that she has a connective tissue disorder. Her joints ache, and she fatigues easily, has skin that stretches more than normal, has stretch marks on her legs (and chest), gets headaches, and throws up easily and often. Fun times!
Last trip was a week ago, and after one day, she asked for a wheelchair rental. I knew nothing about them, but gave it a shot and rented one (ended up renting for 4 of our days, the long walking ones). Wow, what a gift from above! She could rest her legs, and still do everything she wanted! Most lines we could go through with it too!
If any other parents have kids like her, what she MAY have is Ehler Danlos Syndrome. In any case, it could be WAY worse!
We actually just planned another mom-daughter trip for 10 nights in August, and I already know we'll either rent chairs at the parks, or ask at Pop (where I booked us - she's always wanted to stay there!) if they have a loaner to really minimizer her walking.
Any advice is totally welcome! We did get her the new card (first day - she said she knew she couldn't stand long, so we could get return times and let her rest instead), and that worked out very well! It's not like we had to do every ride; we've been many times so a few things a day was fine!

I don't have any real Disney advice, but I wanted to say hi since my 18 year old DS was FINALLY diagnosed with EDS type 3 a couple of weeks ago. It was a two year long process that began with a Marfan Syndrome diagnosis. Three geneticists later, we are at EDS. PM me if you like, I haven't met many parents of teens with EDS. Walking is a real issue for DS as well. He's not much of a Disney nut anymore, but if we go we will definitely have a wheel chair of ECV. He can't walk more than a block without severe pain.
 
Chief my 19-yr. old son is also HEDS. So far he only has mild issues, but knows quite a bit due to living with me Pm me if he'd be interested in talking to him. Happy mommy, your daughter, too. Sometimes it helps to hear things from someone close in age instead of a parent.
 
Thanks Mommee and chiefmickeymouse!
We just met with school today, and she's missed 28 full days this year. It's been so rough. Her (small private college prep school) head is wonderful - if it weren't for him, I wouldn't have thought she had EDS (he mentioned it as a possibility - he's a PhD from a medical college). I had never heard of it. Anyway, we're going to hybrid homeschool the rest of this year, to get her stronger. Such a relief for her! And, a friend has a wheelchair we may borrow (or buy from her) for trips.
STILL scheming taking her away for another Disney mom daughter trip. If we do, we're getting annual passes!
HUGS to all of you!
 
Chief my 19-yr. old son is also HEDS. So far he only has mild issues, but knows quite a bit due to living with me Pm me if he'd be interested in talking to him. Happy mommy, your daughter, too. Sometimes it helps to hear things from someone close in age instead of a parent.

Is your son in school? DS is going to college next year and I'm really nervous. He's been doing school on-line because of his various issues with pain. Now that he has a HEDS diagnosis, as well as POTS, I'm not sure what to do about school. Sorry for hijacking happymommy. I get very interested in talking to anyone who has been through similar circumstances. The EDS thread is great but not too many people check it regularly.
 
Yes he is. He's living at home and driving to school every day. He's having some issues with his fingers so he'll be getting ring splints soon. The great thing about college is you can schedule classes later in the day or whatever suits you, even go part time if needed. every school has a disability office that can help with accommodations. If he hasn't met with them yet he might want to.
 
Is your son in school? DS is going to college next year and I'm really nervous. He's been doing school on-line because of his various issues with pain. Now that he has a HEDS diagnosis, as well as POTS, I'm not sure what to do about school. Sorry for hijacking happymommy. I get very interested in talking to anyone who has been through similar circumstances. The EDS thread is great but not too many people check it regularly.

I'm glad if we can all share information and help each other!
My daughter has one more day at school then home school for her! She is looking forward to more rest! She'll go in 3 times a week for studio art (her outlet - she will probably major in art but hopefully double with engineering too - she's really talented but smart in math & science too - sorry to brag LOL!). Getting tutors for 5 subjects this quickly is a PITA! But worth it!

I had visions of college worries dancing through my head, but thought let's take it one year at a time.

I do worry about her having to walk a long way around a campus, so she'll probably either choose a smaller college or also have a scooter if needs arise.
 

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