Ehlers Danlos Syndrome Thread

[chiefmickeymouse]

DS18 started college on Monday and he's already run into trouble. He was approved for accommodations through the Student Services office, but the letters to the professors don't go out until later this week. Today in English he had to hand write an essay that is supposed to determine if he is working at a high enough level to stay in the class or if he needs remedial English. Handwriting is very painful for him, and he has an accommodation for it, but the professor doesn't know that because the accommodation letters haven't gone out yet. He only managed a few paragraphs and had to stop because of the pain. After that he had to stand through a two hour class because there weren't enough seats. Poor kid.

I told him to go talk the disability support person at student services tomorrow and tell her what is going on and then visit each professor during office hours and tell them what he needs. He's not really assertive, so I hope he'll speak up loudly about this.

 

[happymommy]

I'm so sorry to hear that! My daughter also has issues with writing, but not that bad so far. He fingers bend too far when she grips a pencil or pen. I think if the professor knew, even if your son told him, he would have worked with him, but I understand the not being assertive - my daughter is the same way!

Standing is not good - I feel so bad for him! I hope things turn around fast!!!

Has he looked into ring splints for his fingers? We're going to get some for my daughter after she gets an orthopedic doctor. They keep the fingers from hyperextending. For girls, the silver ones look like cool jewelry - maybe guys would rather use the plastic ones though!!

 

[chiefmickeymouse]

I'm so sorry to hear that! My daughter also has issues with writing, but not that bad so far. He fingers bend too far when she grips a pencil or pen. I think if the professor knew, even if your son told him, he would have worked with him, but I understand the not being assertive - my daughter is the same way!

Standing is not good - I feel so bad for him! I hope things turn around fast!!!

Has he looked into ring splints for his fingers? We're going to get some for my daughter after she gets an orthopedic doctor. They keep the fingers from hyperextending. For girls, the silver ones look like cool jewelry - maybe guys would rather use the plastic ones though!!

I don't think he'd wear splints. He's really subconscious about standing out in any way. He's going to go get his accommodation letters tomorrow and deliver them to his teachers. Today was his longest day of classes. I hope tomorrow is easier for him.

 

[Mommee]

Chief! How's your son doing?

 

[chiefmickeymouse]

Chief! How's your son doing?

A little better. He got accommodations approved to sit in lab and to use a laptop in English. I found an EDS support group in town and got some doctors names. How is everybody else doing these days?

 

[ammag]

Hi all....I had a good friend diagnosed recently and her list of symptoms was shockingly fitting to my issues. Currently I have a chronic fatigue syndrome, fibro, polyarthritis (knee, kneecap, big toes), IBS, non specific sinus tachacrrdia and PVC among a few more diagnoses. These are not new, I've disabled since I was 21 and I am now. 39.

I am curious how much genetic testing for EDS is, as I have two kids and I want to be prepared if they have symptoms if I do indeed have it, also to help wih the disability reviews. Where should I start to get answers? I only have Medicare now no supplemental so I am concerned abt the cost. Thanks for any help! I am on a quest to get some of my life back the last two years I've gone downhill fast! Hoping I find somehitng to help

 

[Mommee]

I don't know how medicare works so I can't answer that part specifically, but diagnosis ranges from a physical exam and taking a family and personal history for hypermobile type, to also sending off for blood tests for vascular type if it is suspected. Are you hypermobile or have skin issues or organ ruptures? diagnostic criteria for each type can be found at ednf.org.

 

[happymommy]

Maybe I can help? My DD just went last month to Johns Hopkins Pediatric Genetics (took since the spring to get in). They were wonderful; we spent half the day there. First they did an echocardiogram at the cardiology department (yeah - I get two bills!) and really checked her heart & vessels out. Thankfully, no vascular issues! So that ruled out vascular. Then the genetics fellow and geneticist examined her. They ruled her hypermobile type with some crossover with classic. Since hypermobile type gene hasn't been isolated, she didn't have blood drawn. It's diagnosed clinically, so I don't know right now if you need to worry about your kids as of yet. Definitely have the pediatrician clinically check them for hypermobility; if they have that, I don't think you need to go further with any diagnosis; you can just take it as they have it or don't probably.

PS: hope you're doing okay now, and also your kids!

 

[sparkleandmagic]

hiya everyone ..sorry to intrude ..but I have eds/pots..spinal neck discs issue/fibromyagia and other health issue and im looking for tips/ on coping with Disney parks..i wont be walking(definitely be using a wheel chair)taking one with me ..im going with my kids (there first time and mine since my condition/mobility/pain has worsen)..any advice from fellow zebras would be grateful..thank you

 

[Cierese]

Pace yourself. Don't try to do everything in one day. STAY HYDRATED. Take breaks midday. Etc.

 

[sparkleandmagic]

thank you.. very nervous about it all.. x

 

[happymommy]

Are you going soon? We'll be there 3/24 to 4/2. My daughter will be in a rented wheelchair - let me know if you will be there at that time!

 

[happymommy]

hiya everyone ..sorry to intrude ..but I have eds/pots..spinal neck discs issue/fibromyagia and other health issue and im looking for tips/ on coping with Disney parks..i wont be walking(definitely be using a wheel chair)taking one with me ..im going with my kids (there first time and mine since my condition/mobility/pain has worsen)..any advice from fellow zebras would be grateful..thank you

Oh and also look into the guest assistance card at guest services. We get one for my daughter so we can get a return time for some rides. In the past they let her wait in a shaded area (Haunted Mansion) or we avoid the walking in line and go in another entrance (Spaceship Earth). It helps her a lot! We spend a lot of down time at Disney the older she gets! She actually is the one to have asked to rent a wheelchair last trip - she seemed to have partially dislocated her shoulder (subluxed?) and her ankles were killing her. Now we just get it - she is in heaven to be able to relax and not walk so much!

 

[sparkleandmagic]

Not going until next may..but I'm worried about it as my conditions has worsen over last two significantly.. Ur daughter sounds similar to me.. My shoulder and ankles are subluxation quite badly..Although as u know u have good bad and really bad days..x thanks for tips..x I love the haunted mansions.. Makes up for having to miss out on some of the big rides

 

[happymommy]

We went to the convention in Baltimore last summer, and learned so much! Sorry about subluxing sparkleandmagic! My DD is going to see an orthopedic doctor soon, and she wants to start some PT. We waited, as she's been busy with robotics which finally ended for the year. She uses KT tape sometimes (never knew about that stuff). She may get a few ring splints for her fingers too.

I hope when you go it's great! Having a wheel chair helps so much with pain and fatigue. Now we know she won't travel without renting one (we may or may not purchase one, but it would have to be a good one). She's fine walking at home, but no way can she do the type of walking we do at Disney!

I found zebra pajama pants last year at Walmart - she's wearing them now! Too cute.

 

[sparkleandmagic]

Hiya..pt does help.as you know you learn to deal with pain and all the complications that comes with eds..I do my best not to give in..but I also know I have to pace..I'm definitely looking to buy an electric wheelchair in the near future.. As I struggle walking any distance.. But I'm not ready to stay home all the time or be totally reliant on others..this is why the trip is so important to me..I want to enjoy it with my kids..forget the pain and stress for awhile..x oh the zebra pj sound great

 

[happymommy]

Just stopping by to say hi to all you zebras!

We booked another Disney trip last week of August, just my DD and me. We went spring break and DH and DS joined us (DS wasn't planned, but lucky we had a one bedroom booked at AKV Kidani that could sleep all of us, since I had rented it from redweek & it was prepaid & not able to change it).

We got free QSDP again, so are going to save our tickets (we upgraded last summer to AP's and they're good until the last two days of next trip, so those will be days we'll do mini golf or relax at the resort).

She doesn't stand in the shower well (gets dizzy), so we booked a room at Pop with a king bed and roll in shower that comes with the connected double bed room (it's a bookable category, says king bed and double bed but it's really two rooms). That way she will be able to sit in the shower, plus I can get up and make coffee (I always bring my coffee maker since Pop doesn't have them) and let her sleep in. She needs to sleep! Especially on vacations!

They do have shower seats, but once we got one that fit in the shower and it worked okay. Last time at Pop (we were only there two nights) they brought us this huge one, and we were like this won't fit in the tub! So she just sat in the tub & it worked okay for two nights.

She uses a shower seat at home, and years ago if we had known I would have converted her bathroom. Now that she only has a year left until college, I don't think it's worth it to tear her bathroom out to do that.

Just an FYI that Disney does provide shower seats for guests.

We'll rent a wheelchair again too.

 

[chiefmickeymouse]

Hi happy, glad you had a great trip and found accommodations that worked well for your daughter. I haven't been on here in a while. DS19 has finished his first year of college. He lived on campus the first semester, but we got him a medical waiver to live at home for the second. The dorm beds were too small (he's 6'5) and there were problems with his diet, trying to eat on campus all the time. Additionally, the air conditioning was set at 78 and they couldn't lower it. With POTS, he was sweating and overheating all the time.

DD16 has an appointment with the geneticist next week to see if she has EDS too. She doesn't have as many symptoms as her brother, but has pain, hypermobility and POTS. We'll see what they say. I found a local support group and they are a very smart group of people, very proactive, and I've learned a lot.

No Disney trips in my near future, as life is complicated right now. I hope all you Zebras and baby Zebras are doing great!

 

[happymommy]

Hi, Chief! We found our Maryland support group, and my daughter likes having it! She needs to know she's not alone. Sometimes it breaks my heart, but our zebras are amazing!

 

[KPeveler]

Hi, Chief! We found our Maryland support group, and my daughter likes having it! She needs to know she's not alone. Sometimes it breaks my heart, but our zebras are amazing!

That was the biggest thing for me when I was diagnosed - now I know zebras from all over the country!