worst day

1905

Well-Known Member
I took my kids for a well check-up at the Dr. today and I waited in the waiting room. The Dr. came out and asked me what happened to Conner's back. I said I didn't know, what? He showed me the kids back looked like he was severely whipped!!! His entire back was covered with horizontal, not quite healed scars!!! I was horrified, but the worst was Conner laughing saying nothing happened. Nobody would do this, I know I didn't and husband would never. The Dr. said he has no choice but to call DYFS. I said if I worked for DYFS and saw this, I would take the kids! Now I am still shaking hours later about this. But it turns out he has this genetic codition where if you are really double-jointed all over,(I am and had to show him) plus you scar easily, I had to show him something that happened recently at work. -to prove it, now he knows what it is. But I still have to go to Childrens hospital to talk to a specialist about this EDS its called, TG he knew what it was or I would be freaking out right now. Waiting for DYFS to show up. I'm having a glass of wine and might even have another. Meanwhile his back is going to be scarred like this . Conner kept saying he scratched it himself. Laughing. The Dr. said show me and yes that is how he scratches. But still, his poor back!!!!!-Alyssa
 

tiredmommy

Well-Known Member
Oh dear! Watch the wine, you don't want them to show up with you tipsy! Make your doctor gets this condition documented on difficult child's chart in case this comes up again.
 

Hound dog

Nana's are Beautiful
I ditto TM. Make sure this gets documented to the Nth degree.

Goodness. I'm glad doctor knew about the condition. :smile:
 

DammitJanet

Well-Known Member
Are you talking about Ehlers Danlos Syndrome? If so, there is a website called EDS Today that has a lot of information. Hypermobile joints can really cause pain and problems when grown. I read several people on a chronic pain board that I visit who have problems with it.
 

1905

Well-Known Member
Janet, Thats it!!! I'm going on that website next. I did get a printout from the Dr. all about it, it can shorten your life span. He does have big problems with his knees. He has trouble walking up the steps in my house. He likes tto play football and it hurts, but he plays through the pain.-Alyssa
 

1905

Well-Known Member
Well that website scared the heck out of me. The 14 yr. old who died from this was the first and last thing I read. I have to make an apt. at Childrens hospital. tomorrow with a specific specialist, and I'll get my info then. Everything is all documented but he has all the characteristics and I do also.. This Dr. is from Childrens hospital of Phila (the one I saw today). -Alyssa
 

DammitJanet

Well-Known Member
Im sorry if I sent you someplace scary! I didnt go look. I just know people on the site I go to that have it and they are around my age or older. Some may be slightly younger than me too I guess.

But yes, the hypermobile joints will cause quite a bit of pain. That is what everyone talks about. Pain in the knees, ankles, shoulders. Even hips. I have a slight case of being more mobile than one would think I should be considering my dxes but my hips flex too far and my knee caps wont stay put.

Do let me know what you find out ok? I will be interested and keeping you guys in my thoughts.
 

Lothlorien

Active Member
Working for an orthopedic surgeon, we have seen some odd and similar cases. The doctor I work for has performed surgery on hypermobile ankles and such, because of pain or frequent dislocations. They cut the ligaments and tighten them so the dislocations don't happen as frequently. This is the first I'm hearing of the scarring, though. I have only seen Ehlers Danlos patients that had issues with ankles and knees.

CHOP is excellent.

So glad you got a diagnosis right away and dr. didn't have to call dyfs.
 

everywoman

Active Member
I hope you get some answers soon. Not knowing is so scary. Sometimes the fear of something is worse than the something you're afraid of...I'll keep you in my thoughts.
 

1905

Well-Known Member
I know, if you could see his back you would be horrified. He said it never hurt. Never. I now have an appointment at least, but its not until September 19th. I had to have all records from pediatrician. dr., dentist, and eye dr faxed over first for them to review before they would give me that. I have the printout from the Dr. saying it causes severe scarring- just in case anyone questions his back. I'm planning on going to the beach so it will be noticed by people, not everyone minds their own busines.-Alyssa
 
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