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Old 07-11-2014, 12:18 PM   #31
sleepingbean
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Did anyone else read the Ehlers Danlos review of fastpass in the passporter newsletter? My eyes bugged out when I saw that. Yay for raising awareness.
I am sharing some products we have used on a blog, just in case they can help anyone else. Something new that I'll add to. I know we have struggled through trial and error and other people's suggestions have helped us out a ton!
Hoping to give it back a little
http://ehlersdanlossyndromehere.blogspot.com/
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The Gluten Free Dairy Free Food We Ate in Disney World
We are NOT Disney People - The First trip report - Pt 1


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Old 07-11-2014, 12:19 PM   #32
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http://www.passporter.com/articles/d...rd-review.html
That is the article
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The Gluten Free Dairy Free Food We Ate in Disney World
We are NOT Disney People - The First trip report - Pt 1


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Old 07-11-2014, 07:00 PM   #33
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Aha sleepingbean--So now I know maybe why the sling wouldn't work-they're posterior dislocations! Mine are inferior or anterior. Occasionally anterior/superior on the left thanks to a 180- labral tear, but never posterior! I'm curious-does that vest thingie do anything to help keep the shoulders in socket, or does it only help with scapular control? I have a half-vest thing that was supposed to help the scapula, but it pulled my shoulders back to the point that the humerus would pull out forward.

I actually went looking for this thread the other day and didn't see it?
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Old 07-11-2014, 07:23 PM   #34
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The vest thing (the s3 ) may help, but I can't report as it was too big to work properly for my kid. By supporting her scapula, that can help prevent posterior dislocation, but it didn't fit across that area properly, so that wasn't working for her.
We are working toward getting something custom made for her (fingers crossed)
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The Gluten Free Dairy Free Food We Ate in Disney World
We are NOT Disney People - The First trip report - Pt 1


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Old 07-15-2014, 06:09 PM   #35
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Quote:
Originally Posted by sleepingbean View Post
Did anyone else read the Ehlers Danlos review of fastpass in the passporter newsletter? My eyes bugged out when I saw that. Yay for raising awareness.
I am sharing some products we have used on a blog, just in case they can help anyone else. Something new that I'll add to. I know we have struggled through trial and error and other people's suggestions have helped us out a ton!
Hoping to give it back a little
http://ehlersdanlossyndromehere.blogspot.com/

No.. I hadn't seen the post until you shared it. That's cool. We've used the DAS in Oct and June for my son since he is the worst of us all. The best part I found out a few weeks ago was that I held onto the card we got in Oct, just so I could show them THIS is what we need for him.. they didn't ask a single question this time.. just scanned the code and printed a new one! Needless to say, I'm hanging on to the one we got for our next trip in hopes that it will be that easy again. But YES! IT works so great! Plus it helps to get the red tag for his stroller as well. Not sure what we'll do about that next time though, he'll be about grown out of it by then.

I do want to add though that the info is a tad outdated on the site. I realize it was written this year and only a few months ago, but the cast members have a stamp they use instead of their initials now.
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Old 07-20-2014, 09:27 AM   #36
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Hi everyone, I'm so glad to see this thread. DS17 was just diagnosed a couple of weeks ago during the Marfan family conference. The geneticist here diagnosed him clinically with Marfans last summer. We weren't satisfied with his opinion so we took him ti dr. Dietz at Johns Hopkins and he says it's EDS, hypermobility. This was good news because I feel we can relax a little bit about his heart. He has been seeing a cardiologist, and will continue to do so.

He has the problems with his feet that I see some of you share. He is getting custom orthotics next week. He has also torn cartilage in his knee and had eye surgery to correct the muscles in his eyes. He has joint pain, mostly in his knees and back, and feels faint when he stands up.

Dr. Dietz recommended he go on beta blockers, have a PT develop a work out plan for joint protection and that he should regularly over-hydrate.

DS also suffers from anxiety and depression, which I read is common in folks with this type of EDS. I don't know if anyone else in the family has it. DD and I are both bendy, but she hasn't got the extreme stretch marks or joint pain her brother has.

Again, great to find you all here!
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Old 07-20-2014, 11:52 AM   #37
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CMM; its not specifically eds but rather having a chrinicall illness or disability that has an increased risk of depression and other mental health issues. Simply put; fearing what a futyre might bring, realisibg one needs to revisit their ideas about life, future, hopes and dreams. That in itself doesnt have to be a negative thing, but does trigger the "half empty glas" for most before it becoming "glas half full".

Been there, done that. Deep depression, looking back triggered by my own way of thinking, dealing with etc. Held myself hostage with "cant work anymore". Having wrongly labelled work with core values I found a must have for life quality, it was no wonder I ended up where I did. Had to shift my focus from what isnt or cant to what is and can. Even the most healthy person has a big enough cant and isnt list and will be in a dark place if making life about that.

I had to re-examine my believes and labelling. Realiae I labelled work as a vehicle to stuff like "self development" etc. but there are many other vehicles to fullfill those needs that do fit my physical abilities. Needed to get over myself on this subject and do what I did with all those other aspects in life and health: focus on what us and can and work with those.

Back than I basically had loads of physical abilities, looking back. A decade later I have much less physical abilities, happen to be one of those on the very bad part of the eds variety scale. But much more important: have learned what huge influence I have on how I view my life, how I live it and as a result: influence the quality of my life. Result; a much happier person and would rate my overall quality of life higher now than I did back than. Which ultimately is the most important imho, how one feels and values, not just facts or health stats.

Its a common comorbidity in general and sons age isnt the easiest. One that already comes with big luve questiins, higher risk of depression etc. Good thing about this all; it being so common has lead to good insight into how to treat and work on preventing relapse. Depending on severity of his depression and physical issues there can be options within the medical psycology (more knowledge and experience with issues related to health/disability than general psych) or physical rehab. The latter combines physical and mental, since both are connected and do influence. They are heavy programs though and ask a lot on both parts. A reason why theyll want to ***** if someone has the abilities for it. Sometimes it is best to first work on mental before doing rehab. Not because they think someone is faking but because it is so demanding. Very worth it though, on both parts.
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Does it really work that way? Doors closing, windows opening, can you really allways count on that? I'll just continue to wish, hope and pray to make sure. Knock on wood, one, twice and trice. Still can't believe it, I really get to visit Mickey again..........


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Old 07-20-2014, 12:07 PM   #38
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With regards to the marfan to heds: what made first doc think mfs? Most of the times that gets triggered by cardio and/or vascular issues in ones medical history. If so; are you aware of vascular eds? Has some likings to mfs. Since all have some overlap of symptoms, diagnosing right type can be difficult. Many with heds will have some overlap with veds symptoms but not have veds and some (lot less than heds though) end up having their diagnose having to be altered from heds to veds.

If there were cardiovascular issues that made them think mfs, it is adviced to have a check up of heart and main vascular system.

If veds (again; most are heds), research has shown one specific betablocker called celiprolol to decrease risks of cardiovascular complications like anuerysm, ruptures etc in those with veds. Most cardiologists are not aware of this research since much more gets published rhan one could ever keep up with, it having limited amount of publications and veds being never or once in a lifetime case for most cardiologists. Good results though and good scientific testing, though limited group. As such most cardiologists are open to this but pointing it out is needed
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Does it really work that way? Doors closing, windows opening, can you really allways count on that? I'll just continue to wish, hope and pray to make sure. Knock on wood, one, twice and trice. Still can't believe it, I really get to visit Mickey again..........


Always keep wishing, dreaming and hoping.



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Old 07-20-2014, 12:14 PM   #39
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Quote:
Originally Posted by goofieslonglostsis View Post
CMM; its not specifically eds but rather having a chrinicall illness or disability that has an increased risk of depression and other mental health issues. Simply put; fearing what a futyre might bring, realisibg one needs to revisit their ideas about life, future, hopes and dreams. That in itself doesnt have to be a negative thing, but does trigger the "half empty glas" for most before it becoming "glas half full".

Been there, done that. Deep depression, looking back triggered by my own way of thinking, dealing with etc. Held myself hostage with "cant work anymore". Having wrongly labelled work with core values I found a must have for life quality, it was no wonder I ended up where I did. Had to shift my focus from what isnt or cant to what is and can. Even the most healthy person has a big enough cant and isnt list and will be in a dark place if making life about that.

I had to re-examine my believes and labelling. Realiae I labelled work as a vehicle to stuff like "self development" etc. but there are many other vehicles to fullfill those needs that do fit my physical abilities. Needed to get over myself on this subject and do what I did with all those other aspects in life and health: focus on what us and can and work with those.

Back than I basically had loads of physical abilities, looking back. A decade later I have much less physical abilities, happen to be one of those on the very bad part of the eds variety scale. But much more important: have learned what huge influence I have on how I view my life, how I live it and as a result: influence the quality of my life. Result; a much happier person and would rate my overall quality of life higher now than I did back than. Which ultimately is the most important imho, how one feels and values, not just facts or health stats.

Its a common comorbidity in general and sons age isnt the easiest. One that already comes with big luve questiins, higher risk of depression etc. Good thing about this all; it being so common has lead to good insight into how to treat and work on preventing relapse. Depending on severity of his depression and physical issues there can be options within the medical psycology (more knowledge and experience with issues related to health/disability than general psych) or physical rehab. The latter combines physical and mental, since both are connected and do influence. They are heavy programs though and ask a lot on both parts. A reason why theyll want to ***** if someone has the abilities for it. Sometimes it is best to first work on mental before doing rehab. Not because they think someone is faking but because it is so demanding. Very worth it though, on both parts.
He is seeing a therapist and has a psychiatrist for medications. Neither really know anything about EDS. It has been a real challenge finding a good medication for him and we had a really hard year last year. He is stable right now, but gained a bunch of weight as a side-effect of one of the medications he tried. This is bad for his joints, he knows and is trying to get the weight off. So far his pain levels haven't required any narcotic type drugs, so we're thankful for that.

Despiteall this, his grades are very good and he is planning for college (he'll be a senior this year). He wants to be a doctor, but I am not sure if he will physically be able to deal with the stresses of completing a medical program. He is such a kind, sweet, smart kid. I feel so bad that this is happening to him. I know it is important to keep positive for him. We are going to see his family practice doctor this week to tell her the results from Johns Hopkins and hopefully get things rolling for physical therapy and a "tip table test" the geneticist thinks he should do.

Thanks for your advice and words of wisdom.
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Old 07-20-2014, 12:22 PM   #40
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Quote:
Originally Posted by goofieslonglostsis View Post
With regards to the marfan to heds: what made first doc think mfs? Most of the times that gets triggered by cardio and/or vascular issues in ones medical history. If so; are you aware of vascular eds? Has some likings to mfs. Since all have some overlap of symptoms, diagnosing right type can be difficult. Many with heds will have some overlap with veds symptoms but not have veds and some (lot less than heds though) end up having their diagnose having to be altered from heds to veds.

If there were cardiovascular issues that made them think mfs, it is adviced to have a check up of heart and main vascular system.

If veds (again; most are heds), research has shown one specific betablocker called celiprolol to decrease risks of cardiovascular complications like anuerysm, ruptures etc in those with veds. Most cardiologists are not aware of this research since much more gets published rhan one could ever keep up with, it having limited amount of publications and veds being never or once in a lifetime case for most cardiologists. Good results though and good scientific testing, though limited group. As such most cardiologists are open to this but pointing it out is needed
They originally thought Marfans because he is 6'6, has loose joints, terrible stretch marks, easily injured joints, strabismus and completely flat feet that supine extensively. His father is very tall too. He has regular cardiological work-ups with a pediatric cardiologist who specializes in genetic disorders
and his aortic root is not dilated, which is the big cardiovascular complication for Marfans.

The geneticist in our town said Marfans, even though DS doesn't have either the enlarged aortic root or lens dislocation of the eye. This was why we questioned the diagnosis. He closed his practice after our second visit and there is currently no geneticist in our town. The doctor he saw at Johns Hopkins is the doctor who discovered Loweys-Dietz (sp?) another related connective tissue disorder. He also examined my son's echocardiograms and told us the aortic root is normal, so that was a huge relief.
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Old 07-20-2014, 04:36 PM   #41
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Quote:
Originally Posted by chiefmickeymouse

He is seeing a therapist and has a psychiatrist for medications. Neither really know anything about EDS. It has been a real challenge finding a good medication for him and we had a really hard year last year. He is stable right now, but gained a bunch of weight as a side-effect of one of the medications he tried. This is bad for his joints, he knows and is trying to get the weight off. So far his pain levels haven't required any narcotic type drugs, so we're thankful for that.

Despiteall this, his grades are very good and he is planning for college (he'll be a senior this year). He wants to be a doctor, but I am not sure if he will physically be able to deal with the stresses of completing a medical program. He is such a kind, sweet, smart kid. I feel so bad that this is happening to him. I know it is important to keep positive for him. We are going to see his family practice doctor this week to tell her the results from Johns Hopkins and hopefully get things rolling for physical therapy and a "tip table test" the geneticist thinks he should do.

Thanks for your advice and words of wisdom.
Pure my experience from own position and through supporting others with eds (do some stuff for eds foundation and have some in my friends group), but knowledge of eds isnt a must. Experience with "medical world" and the effects of chronical illness/disability on psyche and relationships is a must though. While the "vehicle" can alter from diagnose Y or Z, the core issues come down to the same. Grieving the loss of what is no more and learning to accept the new facts. Re-invent yourself in a way. Each person has their own challenges in this, own questions and fears but all go diwn this road. Some find it so difficult, theyll sink into issues like depression. Positive is that underlying blue print which gives knowledge what to do or dont.

If he misses a core click, please search for that click. Its worth it. Many crash on the "you dont get it". Not meaning not understanding eds but the fact that its a different world once entering healthcare. It has its own rules on anything from communication to fact viewing that can be 180 degrees from the rules we have for the same things outside in the "real world". Which makes it very frustrating if talking to someone unaware of those 2 different worlds. Ive seen many crash and burn in "regular" mental healthcare because of this. Most do find that insight within the medical psychology or medical psychiatry. One word extra makes a lot of difference in approach, knowledge and experience.

With regards to ad meds: I would be the last person to tell anyone not to take a medication. There can be very ligit reasons for orescribing ad and using them. I do believe in these situations pill wont ever be "enough". They can be a huge influence, can even safe someones life but talking and learning new life skills or better said: learning to revalue oneself, life etc is also a must. Learning how life with in this case eds can still be very worthwhile. Can still come with huge dreams etcetc. Learning the skills how he can find out what that means for him. What his goals would be, how he can reach them etc. Some of the more physical learning (like where to draw the line and not feel bad about that) are more typical rehab stuff.

Could he have benefit from meeting another person with eds that has been where hes right now, to not just be told so but see things can change? So me people get very empowered by such a glimps into a possible future. If so: have a look round on some boards from usa eds foundation etc.

Its rough to feel as he does mentally. I still call it a worse hell than what the physical can do. Be aware of yourself also, you might find its a bit too much for you as a parent to go through without someone to vent with regularly and/or giving you some coping tools. In phys rehab they take those closest to the "patient" also into account. For kids/teens that would be the parents. Offering them help, support and education. Says enough about how rough it can be for loved ones. Dont feel bad if you find it rough at times. Its human and taking care of yourself allows you to take care of him after all.
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Does it really work that way? Doors closing, windows opening, can you really allways count on that? I'll just continue to wish, hope and pray to make sure. Knock on wood, one, twice and trice. Still can't believe it, I really get to visit Mickey again..........


Always keep wishing, dreaming and hoping.



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Old 07-20-2014, 06:59 PM   #42
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I just wanted to say hi, chief!
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Old 07-21-2014, 01:29 PM   #43
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I just wanted to say hi, chief!
Hi, nice to meet some people who have experience with EDS
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Old 07-28-2014, 08:14 PM   #44
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Job/Career advice?

wrong thing. sorry.

Last edited by ezio; 07-28-2014 at 08:46 PM.
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Old 07-30-2014, 10:11 AM   #45
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We are here now. I rode the mine train yesterday.. I can't do a lot of rides because they are too hard on my body, but the mine train was fine! It went fast at times, but it was SO smooth. The bucket seats really helped to keep me braced, too. Since I spend a lot of time sitting waiting for my family to do the big rides, it was great to know this is one we can do all together.
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