Mom living with Ehlers-Danlos Syndrome (EDS)

Danielle - posted on 04/17/2009 ( 6 moms have responded )

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I am a single mom of a 4 year old hyper active boy. I was just finally diagnosed with EDS. I have been dealing with pain in every part of my body and other heath issues that for the longest something that the doctor could not pen point what was going on or why. But finally at least they have figured it.. EDS is a very hard thing for most doctors to pen point. EDS effects everything in your body including destroying your joints. I have had 2 knee surgeries on my right knee and I just had my first one on my left knee. My right knee still just pops out whenever it wants to and now I have to worry about the left one doing the same thing. My son has only known a mom that can not run, jump, rough house, or any of the other fun stuff. he only knows that mom's knees and body hurt. This makes me feel so horrible that I can not be the active mom I should be for fear of poping a joint or hurting so bad it takes everything I have to function. I am lucky that we do have my sister, her husband, and my mom and dad that takes him to do the fun things I can not, but it makes me feel very left out!!!! I also have a great boyfriend that plays with him.. What can I do?? Does anyone else out there have this??? Any suggestions on activities I can do with him on my bad days???

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Joanne - posted on 05/04/2009

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I also have EDS, and also it took forever to get a diagnosis. I know how you feel being the odd mom who looks like she doesn't participate but actually can't. It's hard. I go to school functions and of course, I LOOK ok, so why won't I help with parties or run a around with my son, etc etc? It can be very alienating, especially when people have never heard of the condition.
My son is about to turn twelve, and shows all the signs of EDS himself, so that's a nightmare in and of itself. (sigh)
When he was younger, I would have him invite friends over when possible. My house is set up to create separate little zones, meaning, if the kids are rough housing in one area, I am sitting at the table reading with the sofa between us. That way I can be nearby and keeping an eye on what's going on, but no one can knock into me by accident, you see?
On bad days... yes, that's tricky, I know. We moved into an apartment complex right next to the pool. In the summer I can hobble down the stairs and be near him in the shade. Really, if you can, change your life around to fit EDS in it. I realize it may not be possible due to money issues, etc, ours is limited. But, when we moved it was a huge factor. So this place has a playground nearby, a lot of seating, a lake with ducks we can feed, that sort of thing.
When he was younger I would take him to McDonalds to let him loose in the Playland for a while, especially on rainy days. For a dollar ice cream cone, it kept him occupied for a looong time and was worth it, although painful to sit for too long (for me).
We recently got a Wii, complete with Wii Fit. It's far more active than regular video games, and I've had amazing results with using the balance board myself! It's really cool. There's tons I cannot possibly do on it (anything using arm movements or sudden balance shifts) because of my issues, but there's a bonus as well: we make him do 30 minutes of Wii Fit before he can play OTHER games, so he is still getting exercise and not being a little couch potato. He was when he was younger. He watched so much TV. People didn't understand- I would work and be exhausted and couldn't do anything with him. It was hard for him. Now that he's older he understands better, but it's still hard. When he offers to carry stuff for me it just kills me inside. (sigh)
Sorry this is kind of random and rambling, I can't sit for long at the computer.
Does any of that help at all? I have more ideas, but I'll have to wait till I can sit down here again...
Take care of yourself.
That's the most important thing you can possibly do. And it will give you more times that you feel well enough to do more with him. I know it's hard.
*hugs*

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Carolyn - posted on 05/17/2016

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Hang in there mom I wasnt diagnosed until this past yr when my daughter started showing signs like mine ive dealt withit since I was 15 the pain and dislocations of my left knee my daughter is 13 and her shou lders dislocate we have type 3 ehlers danlos syndrome hypermobile one and I wasnt able to do thoes things either with her because of it so dont feel so bad hugs to you stay strong I know how hard it is.

Carolyn - posted on 05/17/2016

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Hi im a single mom wh at the age of 15 started to have many dislocations of the left knee even now, ive had hypermobile joints all my life and was really flexible wasnt untill i gave birth early and had issuses with that and then my daughter jst bout a year ago started to dislocate her shoulders like my knee that the decided to test the bothof us for ehlers danlos syndrome they say we show signs of type 3 the hypermobile type but they had to do even more testing because they found out that im missing also missing a small portion of one of my chromosmes as well so they tested my mom and daughter too for the same abnormality any one else here that wasnt diagnosed until years later like me? And that hav vee children with the same thing.

Gaby - posted on 12/03/2012

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Well i have EDS and my three kids too,



I have Dysautonomia too.



The oldest with 6 years old has Wolff parkinson white



The middle boy has strabismus



The youngest has hypotonia.



So believe me im here for you,

Marie - posted on 05/04/2009

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Sweetheart, I have had the same problem, I've been sick for 12 years and my 11 year old has been there through it all, to this day she still cannot ride a bike, but you cannot afford to have all that guilt, get over it and get on with the things you can do--if you have to be down and in a stationary position, then we used to do scrapbooking, read books, color, play with play-do, flashcards, just about anything you can think of to do sitting or lying down, the children really get into it when you let them know that Mommy doesn't feel good and these are the things that you can do together, they will love and appreciate you so much more, after you get rid of the guilt, you will feel so much better and you will not have the stress in your voice and you'll be able to enjoy your children and they will enjoy being with mom and they are learning empathy for others, so you see, it's not altogether a terrible thing, you just have to make the best of a bad situation, Good luck, these things do work, now I have a 2 year old and we have a ball.

Michelle - posted on 04/30/2009

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Thank you thank you I thought I was alone. I was just diagnosed with eds last week. I also feel that my son 3 is missing out on so much. i've had 8 surgeries on my shoulders. i'm use to relocating my hip's and spraining just about everything else. My parents allow me to live with them and help me out. What I've been able to do is set up my living room to support me (pillows, lovesac which is like a big bean bag but soft, and blankets) Also i work with my son on the intellectual side and then my friends have us over to play. According to my counselor me being in the area where he's active will allow him to associate physical play and mom. I understand that doesn't help with the wanting and longing to do it. One thing that i've seen on here is that doing things in pools(lakes) helps the ladys do more and not pay for it as badly later. Maybe you could try that with your son. I'm praying for you and I am sorry you have to have this. Truly sorry for what you are going through physically and mentally.

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