Just wanted to share - daughter's newly diagnosed EDS

[chiefmickeymouse]

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.

He's going to go to a local college, but he wants to live in the dorm so he'll have a place to rest nearby. He has a lot of stomach issues too, so that's an issue. That's good to know about the disability office, I'll look into that tomorrow.

 

[chiefmickeymouse]

happymommy, (sorry quote thing won't work for some reason),

DS being at home has made things easier, both for rest and ease of scheduling doctor's appointments, of which he has many. He does school on-line. You might want to look into that over a tutor if your daughter works well independently. He was accepted at a good college, it was not an issue that he did school on-line. That's great that your daughter is already narrowing down what field of study she wants to do. DS has chosen biochemistry. I think he's nuts, but that's what he's interested in.

 

[happymommy]

She'll home school for the rest of this year, but we already have her contract in for next year, so we're responsible for her tuition (and it's over $20,000). I love her school, but hope next year she will have better health.
We started this year biting off more than she could chew! She was on equestrian team and robotics team, plus has to do community service and does math competitions. It was just way too much! Now we know better, and she's dropped all of it. She may do robotics, since she's the best programmer on her team, but nothing else (community service we'll have her do over the summer like we did a couple of years ago).

 

[chiefmickeymouse]

She'll home school for the rest of this year, but we alreay have her contract in for next year, so we're responsible for her tuition (and it's over $20,000). I love her school, but hope next year she will have better health.
We started this year biting off more than she could chew! She was on equestrian team and robotics team, plus has to do community service and does math competitions. It was just way too much! Now we know better, and she's dropped all of it. She may do robotics, since she's the best programmer on her team, but nothing else (community service we'll have her do over the summer like we did a couple of years ago).

She sounds like a great kid. My daughter's geneticist called me last night and said she has had good luck with her EDS patients taking meditation classes as a way to deal with pain. I'm trying to talk DS into this, but he's pretty skeptical. From what I understand the pain gets worse with age.

 

[Mommee]

The pain dos not have to get worse. With joint protection and proper, safe strengthening of the muscles surrounding the joints it's possible to experience improvement or in the very least prevent a downward slide. The pain gets worse due to cumulative trauma and/or de conditioning from not staying active.
pacing-doing what you can safely while maintaining stability and doing it regularly- is also important. Finding the proper treatment for any gi and orthostatic issues helps, too. I recently discovered salt tablets and for the first time in years I can keep my blood pressure over 100/70!

 

[happymommy]

She sounds like a great kid. My daughter's geneticist called me last night and said she has had good luck with her EDS patients taking meditation classes as a way to deal with pain. I'm trying to talk DS into this, but he's pretty skeptical. From what I understand the pain gets worse with age.

I'm sure meditation can always help! Especially with the stress of illness.
I've heard it can get worse, or it can peak during the teenage years.
I am looking forward to seeing what the geneticist says in August.
We're also probably going to the EDNF conference in Baltimore, since we live nearby (and go to Johns Hopkins for specialists). It's expensive, but we want to get information!

 

[chiefmickeymouse]

I'm sure meditation can always help! Especially with the stress of illness.
I've heard it can get worse, or it can peak during the teenage years.
I am looking forward to seeing what the geneticist says in August.
We're also probably going to the EDNF conference in Baltimore, since we live nearby (and go to Johns Hopkins for specialists). It's expensive, but we want to get information!

We went to Johns Hopkins last July for the Marfan Family Conference. We saw Dr. Dietz and he was the one who suggested the EDS diagnosis, as well as POTS. It's well worth the time and money, as it changed his diagnosis.

 

[chiefmickeymouse]

Once again the quote feature doesn't work. Mommee, how long have you had your diagnosis? Do you have POTS as well?

 

[Mommee]

I was officially diagnosed about 5 years ago. My oldest was at the same time.
I'm listed as having orthostatic hypotension. I failed the "poor man's title table test" in the hospital but never had formal testing done. When i was in high school I was run through the ringer with testing because I was passing out so often. Being eons ago, they just said I have stretchy veins that over-react....
I'm happy to say that I'm now like a stunt girl- I can drop to the ground and prevent a faint without so much as a bruise

 

[Glittercat]

I also have EDS. *waves* Amazon has great prices on small adult wheelchairs, and I think it would still cost less than renting on site. If she is a smaller person you might want to consider that route that is what we had to do years ago before a trip, and I used it for about 6 years. We saved up for a better chair eventually and I've been in it the last several.

Totally agree with the others lights are NEEDED at night in the Parks. The way we solved this in a hurry was to purchase the string of lights sold at kiosks, and wrap them around the top of my chair. Also to purchase the light up ears, I can't tell you how grateful I was for those in crowds. It's easy to feel and be almost invisible in a wheelchair as you're at about 6 year old height and it is safer for everyone if those on wheels light up like a Christmas tree.

A small backpack on her chair should contain a tire pump if they are inflatable tires, a small set of allan wrenches, a change of clothes (for wet rides or the ridiculous overheating that happens in chairs), an extra set of gloves as those buggers like to go missing. lol. and a book or whatever she would like in case she gets stuck somewhere for a few minutes.

If she is going to mainly be pushing herself I recommend doing a few miles in it every day for several weeks to build up her strength. I shoot for 5- but did not heed my own advice for our trip to DL and paid for it for a week after. For WDW though I do the 5 miles or more and it makes a huge difference in endurance and enjoyment of the park. Every once in awhile my dear husband or children push, but I like to be in control of my own wheels most of the time.

I wish you and your daughter the very best, and you ever want to chat further please let me know. That goes for others with EDS and or wheels as well! *stretchy hugs*

 

[cantwaittoseemickey]

I thought I would say hello. Our daughter who is 17 was just diagnosed with EDS about a month ago. She will be going to college this August. Should I let them know? Will they make accomodations for her? I second the TiLite wheelchair. Our son uses a Tilite and it has been great!

 

[Glittercat]

For some of us the pain does get worse with age. I'll be 40 in a few months and stay fairly fit, but my pain from rheumatoid arthritis and eds are getting more severe, some of that is just because of so many experimental surgeries from childhood though. I'm having to consider a power assist chair years before I thought I would.

Swimming helps more than anything for my own body, and many EDS'ers find the same.

I'm very grateful for my TiLite chair and have used it a couple of years now. Before that it was a small standard chair from a local provider. That chair I painted up this one I haven't yet. Though am going to paint a few covers including one for Disney!

May someone pretty please link the EDS thread? Also any websites where you share info. about EDS, I listed a few of mine they are just Pinterest boards but they really helped when life w/ EDS felt overwhelming.

https://www.pinterest.com/ms_rebecca/adaptability/ EDS, humor, etc.
https://www.pinterest.com/ms_rebecca/adaptability-blingy-wheels/ chair ideas and decorating
https://www.pinterest.com/ms_rebecca/adaptability-vroom-vroom-chair-style/ fashion on wheels
https://www.pinterest.com/ms_rebecca/adaptability-balance/ yoga, breathing, meditation, fitness with chronic illness

 

[lanejudy]

May someone pretty please link the EDS thread?

This is from the disABILITIES Community Board: http://www.disboards.com/threads/ehlers-danlos-syndrome-thread.3177769/

 

[Glittercat]

@lanejudy thank you so much for that link!

 

[happymommy]

Thanks, Everyone!

In the parks, I'll push her. We have a friend with a chair that she no longer needs, so I may borrow it to bring!

She doesn't have POTS that we know of.

She's being homeschooled now to finish out the year, so she can get more rest. That girl can SLEEP!

I thought I would say hello. Our daughter who is 17 was just diagnosed with EDS about a month ago. She will be going to college this August. Should I let them know? Will they make accomodations for her? I second the TiLite wheelchair. Our son uses a Tilite and it has been great!

I am certain that they will make accommodations. My son has ADHD and is a senior, and he'll get them in college too. We're going to work on it ASAP (get them the documentation). He gets extra time on tests, quiet test areas, and computer use instead of handwriting (he's borderline dysgraphic).