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Undiagnosed Symptoms Community
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Avatar universal

Help for my daughter!

This is regarding my 10 year old daughter. Her pediatrician is perplexed. She has had random ankle and wrist pain over the last 4 years. We have seen the dr and she has done X-rays. Nothing can be found. On May 2,2015, she came to me because her ankle was sore and had a purple bruise covering her ankle and foot. Again nothing showed on X-rays. Sent me to orthopedic dr. They put her in a cast for 4 weeks. The cast came off, the bruise was gone. She continued to have soreness and pain. 3 weeks after having the cast removed, her ankle turned purple again. They put her in an air cast boot for 2 weeks. Now she is in physical therapy once a week. She still has pain while running or any type of exercise. She is and always has been the type of person whose cold all the time. I will have sweat running off me and she's in full winter gear. The only other thing is, she has gotten a few nosebleeds in the last few weeks. I have no clue and I'm worried there's more to this. Need some outside the box ideas.
6 Responses
620923 tn?1452919248

  Hi..have they tested her for Ehlers-Danlos Syndrome? It is a connective tissue disorder that can cause joints to sublux and  move this can be painful....and it can also cause one to bruise easily and we heal very slowly....she may have sprained her ankle or it may have popped out of joint.....Has she ever been considered to be "double jointed" ?

Those with EDS also are prone to have Raynauds phenomenon which causes an issue with circulation and results in cold extremities....and dealing with the cold can be difficult as it hurts.

Not knowing where  you are from to suggest where to go, but try a rheumatoid Dr for the EDS and start there .....
1530171 tn?1448133193
Yes I agree with Selma and the details in your post point to the classic
EDS types  which affect typically the skin, joints and blood vessels.

There's no medical cure for EDS at this point, only symptom management.

Should she get an EDS dx, please let me know, as I have some information on a holistic treatment, which may help.

Best wishes
Niko
Avatar universal
Now that you mention that, her pediatrician did have her bend over to touch her toes. Seeing if maybe she was really flexible. So I gues EDS is out.
1530171 tn?1448133193
I suggest you ask for a skin biopsy also , before you accept this determination as final just by this simple test.
And come to think of it, wouldn't a Rheumatologist be the doctor to properly diagnose or rule out EDS, since the suspicion is some sort of a connective tissue disorder?
Avatar universal
I believe that our next step is a visit to a rheumatologist. I'm sure that will take forever to get an appointment too.
1530171 tn?1448133193
Put your name down on the cancellation list, to be called when there's a cancellation.
Rheumatologists deal with a lot of elderly patients (mainly due to arthritic conditions) and there are usually above average medical appointment cancellations in this age group.

While you're waiting for an appointment you can look into an abstract of a study titled:
"A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements".

Search under: PMID: 15607555 [PubMed}

I may have a more recent and expanded report on this study saved ...somewhere.

Best,
Niko
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