Ehlers Danlos Syndrome Thread

[Glittercat]

All very good points @Mommee! Another thing I have to add is that we require more anesthesia that people without EDS. Having been one of those to wake up on the operating table during surgery as a child I know this one by heart. Also as our connective tissue is faulty we don't heal in the same way and our scarring is often quite severe.

I agree you really do have to live life a bit differently with EDS.

 

[lizard1]

Thank you for the advice, you both have given me a lot to think about. That makes sense now about more anesthesia....I wonder if that is why any medications they have tried have had no effect on my pain and why the epidurals I have had only took the edge off but I could still feel everything (when they worked). If I try to get a diagnosis, my hope would be that they could better treat my pain with no surgery.

 

[Glittercat]

Thank you for the advice, you both have given me a lot to think about. That makes sense now about more anesthesia....I wonder if that is why any medications they have tried have had no effect on my pain and why the epidurals I have had only took the edge off but I could still feel everything (when they worked). If I try to get a diagnosis, my hope would be that they could better treat my pain with no surgery.

Let us know what you learn.

 

[Glittercat]

Can we talk about pain here? What do you do for it? I use a lot of heat, ice, and baths (or swimming) and humor. The hand and joint pain is out of control right now and I just wondered if anyone had any helpful tips for how they cope.

​

 

[Mommee]

LOVE my theracane for muscle spasms. Epsom salt baths work a little, but I usually just soak my feet because it dries out my skin and makes it feel weird. I have a heating pad with a foam pad you get wet for moist heat-it works better that way on my back. For hands, paraffin baths and splinting for rest is all I've found. I just had my second fusion on my right hand in March so I'm hoping that will help some. Hands are one of my worst parts!

 

[Glittercat]

LOVE my theracane for muscle spasms. Epsom salt baths work a little, but I usually just soak my feet because it dries out my skin and makes it feel weird. I have a heating pad with a foam pad you get wet for moist heat-it works better that way on my back. For hands, paraffin baths and splinting for rest is all I've found. I just had my second fusion on my right hand in March so I'm hoping that will help some. Hands are one of my worst parts!

That heating pad sounds helpful indeed! I forgot about the paraffin, that might help! Hands. *sigh* They hurt something fierce don't they. Mine too. Scared now because what happens when can no longer push rims of wheelchair- thought this would happen later, not now. Are you in a wheelchair too?

 

[Mommee]

I have a transport chair that someone pushes me in when my hips are acting up or it's going to be more than 10 minutes of walking. My shoulders are a mess, too, so pushing myself is out of the question. I've had 4 shoulder reconstructions but the ligaments just stretch back out and the labrum re-tears. I have a rollator I can use at home when needed and use my feet to scoot around if needed.
I've heard they make pedals that you can strap to hand bracing to push without needing to grip. i don't know a lot about it, though. Otherwise I guess a power chair would be your next step!

 

[Glittercat]

*gentle

I have a transport chair that someone pushes me in when my hips are acting up or it's going to be more than 10 minutes of walking. My shoulders are a mess, too, so pushing myself is out of the question. I've had 4 shoulder reconstructions but the ligaments just stretch back out and the labrum re-tears. I have a rollator I can use at home when needed and use my feet to scoot around if needed.
I've heard they make pedals that you can strap to hand bracing to push without needing to grip. i don't know a lot about it, though. Otherwise I guess a power chair would be your next step!

*gentle * Some days this stuff is rough. My surgeries have been knees thus far, but shoulder ligaments tear some from dislocating. I'm truly sorry for what you go through.

We may have to look into a power assist chair, but I just don't feel ready. The RA is doing a number on my hands though. *shrug* I have no idea. =/

At least we still have Disney right? *little smile*

 

[disney world dreamer]

this is so crazy because we just found out my 2yr old niece has this a couple days ago and then i saw this thread.

since january 2014 she has been receiving PT and OT and then later in 2014 she started receiving speech therapy.

(not sure if it has anything to do with EDS but she wants to tell you so many things but you have no idea what she is saying. she will even repeat herself several times and say it slower but you still can't understand her. she has been getting much better but only certain words are crystal clear like "mom", "i stuck" which she says when she wants down even if she's not actually stuck lol, "mickey", "let it go" lol....)

she also goes to a playtime therapy with other kids and she has aqua therapy once a week.

she has special shoes and little foot braces.

she went from not even being able to get in a crawling position or rolling over to walking and running after about 9 months of PT and OT.

 

[Mommee]

That's amazing progress for your neice! I really feel more of us could avoid becoming so disabled if it's identified early enough and proper therapy and activity modification take place.

 

[Glittercat]

(not sure if it has anything to do with EDS but she wants to tell you so many things but you have no idea what she is saying. she will even repeat herself several times and say it slower but you still can't understand her. she has been getting much better but only certain words are crystal clear like "mom", "i stuck" which she says when she wants down even if she's not actually stuck lol, "mickey", "let it go" lol....)

Someone else can correct me if I'm wrong here, but I don't think speech issues have anything to do with EDS. Our connective tissue is faulty and research is vital if we ever hope to understand these disorders.

she also goes to a playtime therapy with other kids and she has aqua therapy once a week.

Yay for this! Playtime with others is good for on so many levels! Swimming will help her body quite a bit! I swim twice per week, but would every single day if I had the option! So glad she's getting good solid care!

she went from not even being able to get in a crawling position or rolling over to walking and running after about 9 months of PT and OT.

This is wonderful news! I was an early talker and a late walker, they also used to call hypermobilty "double jointed" and since the damage isn't often apparent as a small child, it is usually missed completely or ignored until later life.

Props to you and your family for being aware and getting her the care she needs! It is exciting that she was diagnosed so young and that her medical team take it seriously as odds are much of the wear and tear on her joints can be prevented or mitigated. So happy she has you in her life!

 

[KPeveler]

Glittercat, what kind of pushrims do you have? My hands are a mess and my wrists just can't keep pushing, so I am getting Natural Fit handrims on my next chair. They are amazing!

 

[SueM in MN]

My daughter has natural fit pushpins. They have made quite a difference in her ability to push her chair and avoid pain (cerebral palsy and related arthritic changes to her hands/wrists).

 

[SueM in MN]

Someone else can correct me if I'm wrong here, but I don't think speech issues have anything to do with EDS. Our connective tissue is faulty and research is vital if we ever hope to understand these disorders.

Yay for this! Playtime with others is good for on so many levels! Swimming will help her body quite a bit! I swim twice per week, but would every single day if I had the option! So glad she's getting good solid care!

This is wonderful news! I was an early talker and a late walker, they also used to call hypermobilty "double jointed" and since the damage isn't often apparent as a small child, it is usually missed completely or ignored until later life.

Props to you and your family for being aware and getting her the care she needs! It is exciting that she was diagnosed so young and that her medical team take it seriously as odds are much of the wear and tear on her joints can be prevented or mitigated. So happy she has you in her life!

Being an RN with a child who can't speak, there could be quite an effect on speak for some people with EDS.
There are a lot of components to speech that happen automatically that we tend to not think about.
Breathing needs to be coordinated with speech and in some people their connective tissue abnormalities may make a difference in their ability to control their breathing in coordination with making the correct mouth movements.
Some people might also have abnormalities in the connective tissue parts of the mouth and how muscles insert into bones. I don't know how common it is with EDS and the people I knew with it did not have speech issues, but it's a possibility.

 

[KPeveler]

Being an RN with a child who can't speak, there could be quite an effect on speak for some people with EDS.
There are a lot of components to speech that happen automatically that we tend to not think about.
Breathing needs to be coordinated with speech and in some people their connective tissue abnormalities may make a difference in their ability to control their breathing in coordination with making the correct mouth movements.
Some people might also have abnormalities in the connective tissue parts of the mouth and how muscles insert into bones. I don't know how common it is with EDS and the people I knew with it did not have speech issues, but it's a possibility.

So much about EDS is not known yet. There is a very high correlation between people with EDS and people with cognitive/behavioral disorders, especially ADHD and ASD. In fact, most of the people I know with EDS also have something like ADHD or autism or SPD or something. So it may be there is a brain connection we do not know yet, and that caused speech delay.

Unfortunately, sometimes the best information we have right now is anecdotal. There is so much research still to be done.

 

[happymommy]

Just wanted to say, "Hi!" to everyone here. I'm glad to find this thread!
My DD (16) has EDS, and we're waiting until September to go to Hopkins genetics clinic (and her echocardiogram).
We just discovered she also has major depression, probably has a lot to do with the pain, but we also have strong family history of it.
We're having a lot of issues now; she thought she had a seizure this weekend, but the psychiatrist said it was likely not one at all. So going today to the primary doctor, and I want them to order a scan immediately to rule out aneurysm. I know they'll want her to go to the neurologist, but I don't want to wait for yet another appointment!
All summer it's been doctor after doctor. At least now we know what has been wrong with her though!
It was frustrating; having so many people (NOT me!) thinking her symptoms were all in her head.
Thanks for letting me vent.
PS: we're going to the EDNF learning conference in Baltimore. Anyone else here going? It cost a fortune, but she really wants to go (and she really doesn't ask for a lot ever, so I figure it's worth it).

 

[KPeveler]

Just wanted to say, "Hi!" to everyone here. I'm glad to find this thread!
My DD (16) has EDS, and we're waiting until September to go to Hopkins genetics clinic (and her echocardiogram).
We just discovered she also has major depression, probably has a lot to do with the pain, but we also have strong family history of it.
We're having a lot of issues now; she thought she had a seizure this weekend, but the psychiatrist said it was likely not one at all. So going today to the primary doctor, and I want them to order a scan immediately to rule out aneurysm. I know they'll want her to go to the neurologist, but I don't want to wait for yet another appointment!
All summer it's been doctor after doctor. At least now we know what has been wrong with her though!
It was frustrating; having so many people (NOT me!) thinking her symptoms were all in her head.
Thanks for letting me vent.
PS: we're going to the EDNF learning conference in Baltimore. Anyone else here going? It cost a fortune, but she really wants to go (and she really doesn't ask for a lot ever, so I figure it's worth it).

Welcome! Have you seen Clair Francomano in Baltimore? She is amazing!

One of my friends told me they give "scholarships" to some people who go to the EDNF conference in past years, so in the future you may want to look into that.

I was not diagnosed until I was in my 20s and I was told repeatedly that it was all in my head.

You may want to be aware about the neurological issues that can go with EDS, including Chiari, cranio-cervical instability, and tethered cord. They can sometimes lead to seizures and were a definite cause of some of my pain. I am now fused C2 to my skull and it really helped!

Hope you have a great time at the conference!

 

[happymommy]

Thanks, Katy!
We don't qualify for the scholarships I'm sure, but knew about them. I'm glad to go to support my daughter.
I know we'll learn a lot, but thanks for the info. We need to do so much research. The CT scan was normal, but she's going to a neurologist next week for a full work up to make sure it's all good. At least we know it wasn't a seizure now. And no bleeds in her brain. She's doing well now
I can't wait to find out what we can at the conference.
It's so good to finally know why she, as her pediatrician said once jokingly, always threw up on Fridays! I took her in once when she was little when she threw up, and that was his response (not blowing us off, but he know she had a sensitive tummy on a Friday). She just always threw up - gastroparesis. It's totally better on erythromycin now!
Life will get better!!!

 

[chiefmickeymouse]

Just wanted to say, "Hi!" to everyone here. I'm glad to find this thread!
My DD (16) has EDS, and we're waiting until September to go to Hopkins genetics clinic (and her echocardiogram).
We just discovered she also has major depression, probably has a lot to do with the pain, but we also have strong family history of it.
We're having a lot of issues now; she thought she had a seizure this weekend, but the psychiatrist said it was likely not one at all. So going today to the primary doctor, and I want them to order a scan immediately to rule out aneurysm. I know they'll want her to go to the neurologist, but I don't want to wait for yet another appointment!
All summer it's been doctor after doctor. At least now we know what has been wrong with her though!
It was frustrating; having so many people (NOT me!) thinking her symptoms were all in her head.
Thanks for letting me vent.
PS: we're going to the EDNF learning conference in Baltimore. Anyone else here going? It cost a fortune, but she really wants to go (and she really doesn't ask for a lot ever, so I figure it's worth it).

DS18 has EDS and major depression also. I was among the people who thought it "was all in his head" before I got serious about a diagnosis. We aren't going to the EDNF conference this year, but might think about it for next year. We went to the Marfan conference last year because he had been misdiagnosed with Marfan Syndrome. I'm sure you'll meet some awesome people and collect some new information at the conference. The best part for us was being able to see an expert at Johns Hopkins who FINALLY gave us some answers.

 

[happymommy]

Welcome! Have you seen Clair Francomano in Baltimore? She is amazing!

One of my friends told me they give "scholarships" to some people who go to the EDNF conference in past years, so in the future you may want to look into that.

I was not diagnosed until I was in my 20s and I was told repeatedly that it was all in my head.

You may want to be aware about the neurological issues that can go with EDS, including Chiari, cranio-cervical instability, and tethered cord. They can sometimes lead to seizures and were a definite cause of some of my pain. I am now fused C2 to my skull and it really helped!

Hope you have a great time at the conference!

We haven't even called to get into Dr. Francomano as of yet, only because it's a 2 year wait from what I heard at the conference.

Now we're pretty sure she has POTS, so will address this soon.

We also want to get her examined for the spine issues soon. For now, no roller coasters!

The conference was AMAZING. We learned so much, what we need to do, more doctors to add to her team (and switch at least one). It's quite a job for me! She loved all the information, so even though it was expensive for the 3 of us to go (DS stayed home - we just commuted) it was so worth it! Plus, the Hilton did a great job - they fed us constantly!

So many shared how others thought it was all in their heads. Such a shame. We learned that EDS is the single most underdiagnosed disease in the world. It isn't that uncommon, just not diagnosed or misdiagnosed so much! Now I think it came from me; I have leg swelling (but high blood pressure), bruise easily, had 2 preterm labor issues, so no more kids, already getting arthritis at 48 slightly, but no hypermobility or stretchy skin like she has.