who wants to test their knowledge on Heds

My son and I have it, among us are possible others in the family. My question is, that since my brother and I are so close in age, we are the same age for three days, so that would mean that three months after he was born, I was concieved. Therefore stirring a notion that since I was born in a window that even normal people aren't suposed to do, has this cursed me and accelerated my eds? Reason I ask is because my father who passed away from pretty much all his organs failing in his late 60s showed signs several years before of what I'm going through now. Bilateral dropfoot for example. But I started showing major signs in my 20s and while that's not uncommon among edsrs, my son who is but one years old was diagnosed same day as me and he's allready in pain, his bones are looser than mine. He is 14 months almost and while he can stand, he is still afraid to step, he's starting late, he learned to crawl on veterans day"hand salute" but he was several


months late. I cai t imagine what's going to happen with his son. Are we being erased from exestence

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22 replies. Join the discussion

Srry my phone doesn't let me scroll down so I messed the last part up and couldn't fix. :P

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Hi revenan77,

Here is the problem...EDS is an under-researched condition resplendent with questions. Take a look at Dr. Fracomano's Powerpoint from last year's Conference entitled "What we know and what we don't know"...it's a very interesting read...http://www.ednf.org/images/2011conference/Handouts/Francomano_EDS2011_What_ We_Know_2slides.pdf

It just isn't known why one generation is more severely impacted than another nor do we know why siblings who both have EDS will have differences in severity and differences in which bits and pieces are impacted. It's a genetic mystery.

Your son's (adorable, btw) development is not "late". Children reach milestones in a huge range...for instance, a baby reaching the milestone to stand: 8 - 13.5 months old. There is a huge range in which it is all considered "normal". The milestone for walking? 9 - 16 months old. Your son is hitting the milestones as he should...in his time.

Now then, the "quality" of those skills may be atypical if there are physical impediments hampering those skills. However, as long as he is progressing in skill development and not regressing or staying stagnant, I would not worry.

He may be more severely impacted by EDS than you...or he may not. Or he may have completely different issues than you...in fact, that is highly likely. Also you are not being erased from existence. For better or worse, we EDSers continue to find love, marry, and have children...we aren't dwindling out of existence, in fact we are growing our numbers.

In the end, EDS is currently treated by treating the symptoms. Without a crystal ball, attempting to predict your son's future is futile. Rejoice in today and treat the symptoms he has today. In five years, he will probably have different issues and you will figure out how to treat those at that time. Continue educating yourself about EDS for your benefit and his and celebrate that your son will have the gift of knowing what the pain is and having a family who seeks treatment from the get-go....that is a gift few of us have had.

I know it is hard, but don't waste time worrying about the future. Your son is developing well according to your description...he in no way would qualify for special education services with how he is hitting milestones...he is "normal".

Take care...

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Hi revenan77,
I'm going through a lot of this with my own kids and I wondered about the age thing too. My son is only 14 months younger than his sister. My daughter (very hypermobile) didn't walk until she ws 14 months old. My brother didn't get around to it until he ws 18 months old! He's got some pain in his shoulders and knees but does very well. Your son is absolutely adorable. I will pray for both of you.

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Call your local school district. Did you know they can help if your child shows delays even from birth?

My youngest has Ausperger's and both my girls now 15 and 16 have HEDS. Their therapy caught them up and now both are above age and grade in many area's. As all kids they still struggle in some areas like math, but they are doing well. The schools came in and did Occupational, Speech, and Physical Therapy with my oldest at 7 months old. They also helped me get them to expert testing for neuro, ortho, and more. It is called an IEP and if your child shows delays something I recommend. They come to your home or daycare even. They show the parents and family games and activities that help with catching up. I would swear by the services I got for them in North Carolina and California. They do it because testing shows the earlier the intervention the more effective it is lifelong.

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As for the age thing. My son only has one hypermobile joint. No other symptoms. However his sister who is 4 years younger has very severe type 3 EDS. The one thing we know for sure is that there is no cookie cutter one size fits all when it comes to this disorder.

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Hi Michelle,

Early intervention is highly effective and I am happy your family benefitted from it. That is the job I was doing when I was suddenly placed on medical leave due to EDS...and where I am now.

Based only on the gross motor skills revenan77 described, his son would not be found eligible for pt through early intervention because there is no significant delay. However if the "quality" of the skill is not typical for the age range, then sometimes services can be provided due to atypical skill development. Of course, there may be significant delays (a minimum of a 25% delay) in fine motor, communication, cognition, social-emotional, or self-help skills, but revenan77 did not mention any. If there are significant delays in any of the areas of childhood development, contact the Infants and Toddlers Early Intervention Program...this is usually managed by the health department, but in some areas it is managed through the school system or mental health department. If you are not able to locate the program in your area (in the U.S.), contact your local Child Find with the special education department of your school system and they can provide you with the contact information for the Infants and Toddlers Early Intervention Program.

Gentle hugs..

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I had forgot to mention that he didn't crawl untill 11 months, and he picked up ssitting standing(with help) not long after that. His head size is in the 100th percentile, and is schedualed for a brain scan, I'm not worried about intelligence, he's pretty smart, I just don't want him to feel my pain this early

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You might want to contact Dr. Diana on this site or on her site, www.prettyill.com (a good site to become familiar with by the way) about your son's head circumference. In the meantime, go ahead a read through this thread: http://www.inspire.com/groups/ehlers-danlos-national-foundation/journal/my- next-clinical-trial-for-eds/

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Thanks for your thoughts, I have to bring up that this is the photo taken on last veterans day. The day he learned to crawl. A nice veterans day gift for me as I am a disabled vet

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Your son is cute, he gets that from his mama. :) yes that's my boy, he will be a great walker soon tas he gets the confidence he gets after the first step. We work on it daily. He's our cute little monkey who loves to climb his daddy like a tree and reach for the ceiling. Almost resembling him reaching for the stars. Just like his daddy did. You can reach for the stars and tho u don't always catch one, at least you wont come up with a hand full of mud.

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BCDR,
Just curious which joint is your son's only hypermobile joint? Because it's the same with my son and daughter. He has only hypermobile wrists and yet she is very hypermobile!

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@ashes thanks babe, and welcome to the site :)

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I hope you don't mind if I point out that y'all are an adorable family. Welcome, Ashley!

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My son didn't walk until he was 16 months old. When they told me he was delayed at his pre-k testing I was shocked. He is the least affected in our family.

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@the holla ty and ash says thanks she tried to earlier but her phone messed up.

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MichelleShepley I assume you meant your child has Aspergers?
I have found that many people and kids with forms of Autism (I have Aspergers and out of my five kids two have Aspergers and one has classic Autism.) strangely also have loose joint issues. revenan77 Im not saying your son has Autism by these things that you have mentioned but slow walking and large head is also signs of Autism. Here is a link that you can look for red flags http://www.medicinenet.com/script/main/art.asp?articlekey=80625
There is also a quiz you can take. i was very amazed when I googled ADS and Autism and found so many articles about it. Even my Rheumy when we pointed out my hyper mobile joints in my fingers said he had heard it was common for people with forms of Autism, he is also going to pass this on to my Ortho doc. Im going to the hospital for two weeks next weekend so they can find a way to help me. I have Ankylosing Spondylitis but its not typical and I have a lot of issues and severe pain. There is a specialist on EDS there at the hospital, it is a special hospital for people with bone diseases.
My youngest who has classic autism has already been diagnosed with loose joints and low muscle tone in her legs and hips. We have to be careful with her because she tires easily and has fallen and had to go to the ER a few times, the worst being a broken elbow.
I hope you and your son well.

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I didn't walk til I was 3 because of my EDS, but I got the hang of it! (I'm 60 now). Seriously, I know what you mean about the pain. I know you don't want him to hurt. Growing up, my mother was the only person I knew with my disability. We used to talk about how it affected us so differently (much more severe in me) and how what hurt one day didn't the next. Your son may have pain (I'm sorry), but it may not be as bad as yours. Without trying to sound like Pollyanna, focus on what works. One thing with EDS, you can never assume!

My mom had EDS (apparent from birth), I have it (apparent from birth), my older sister has it (but it didn't manifest itself in her til she was In her 50's), my brother's son has it(mild), and his two kids have it. I don't think the EDS in your family is affected by how close in age you are, if that's what you are asking.

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I want to be brief late here and did read all posts with great interest. However MY MOST SINCERE THANKS (luv to learn and even if I'm 57 and wasn't dx'ed til 45 and DO HAVE Classical EDS (at that time they were calling me hypermobile classical lol) TO SLAPASMILE ON for your link ........READ ALL THE WAY THRU it i DO know the physiology quite well so even diagrams a bit hard but helpful! and yes I'd read that an upright MRI much more conducive to very much more results and views than supine...as I do have very severe early onset d.d.d. and cervical is very bad, disc bulge, stenosis, osteophytes, facet joints etc. (iOnce upon a time in a land far way and long, long ago ;-)) was 5'6-1/2" and now am 5'4"; was in denial when first they told me this (some years went by where I just 'grinned, bore it and ignored it' LOL even after the genetic dx. I was still 'viable' enuff for societal norms and all that 'jazz'!
I am enured to the 'back then' ...'are you drunk - on drugs' shocking hurtful remarks because of my very low b.p. sending me careening around, tachys/bradys you name it! and clearly worsening gait, back issues and such. I AM mostly bedridden now very strong symptoms of dysautonomia - so what.....I FOUND YOU and this forum is of incredible help. So there nah nah da boo boo (sorry my humour gets me thru hope you don't mind it!)

thanks SO MUCH for something able to explain for me to people who WANT to learn why I hurt so bad so much of the time. even with meds, and why i can't 'make it' to their dinners & functions.... there's always the break-thru pain and now I can barely walk the hallways let alone drive.......lost a lot of 'normal living' but I'M HERE, the 'activist, advocate tho' never an anarchist' haha TY all but to you " slap a smile on!" 'help ever hurt never' xo and nite nite 'sleep difficulties r us!' t-hee-hee

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p.s. AND I was never able to sustain a pregnancy so likely that cervical insufficency too BUT MAKE NO MISTAKE my happiness is that all your children have so MUCH MORE of a chance at real, cutting edge and early intervention WARNING & HELP! xo and out

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I wish we'd all remember to share NOT publicly sometimes ya know? but i think peeps just start writing & forget all about it but remember we CAN choose members only i think?
@SlapASmileOn again .... I HAD SEEN awhile Dr. Diana's prettyill.com site and my husband and I watched her explain it all but most go there again thanks! Also, I want to find another silver lining in that I have THE most awesome g.p. he by SYMPTOMS is sure of the dysautonomia dx and I await endocrinologist this month 19th.....i have so many issues with it especially, kidney and thirst way & bowel gut acting up now too, bad plus food sensitivity allergies any ideas who can help with the so called salt pill did not! Lead to lack of sleep and which makes everything 'feel worse'.....bowel stuff and even 3 episodes (GOD HELP ME!) of incontinence. Let me finish with this: "I'm too YOUNG to be this OLD!" ha! and...'What the heck ISN'T wrong with me?" lol and xo to all big HUGZZZZZZZZZ and now zzzzzzzzzzzz for mezzzzzzz Patty

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