Is it EDS?

[grasshopper2000]

My 11 year old daughter has an autoimmune bleeding disorder, ASD, dyslexia and visual stress. She has also been suffering from various joint and muscle pains in her feet, legs, hips and wrists for at least 18 months but the pysio, rheumatolgist and haematologist seem a bit confussed by it.

I came across EDS as a few people said it can be common with ASD and I realised my daughter has many of the symptoms.

I thought she definitely wasn't hypermobile but I looked at the Beighton scale and realised she is definitley hypermobile in her fingers and thumbs/wrists and possibly also her elbows, but I'm not sure. If she isn't in her elbows then could she still have EDS as she wouldn't score 5 or 6+?

The problems the rheumatologist and pysio picked up are 'noteable quadriceps wasting superior to her knees' (very low muscle tone). 'Prominent knees bilaterally with soft tissue thickening especially in the infrapatellar area' (swelling below her knees). She also has very tight hamstrings. The pysio says restricted movement in her arms but the rhymatologist disagreed with this. She suffers from painful feet at the bottom and the back of the ankle which we have been told is severs disease. She also has an incorrect gait which means her heels roll inwards and she walks on the side of her feet.

The pysio now thinks it is just growing pains. But I don't think so. Also if it was I'm not convinced she'd want to see my daughter every 4 weeks which she has done since the beggining of the year and she is pleased the rheum is seeing her again. Also despite being given about 30 mins of exercise a day for a few months it has not helped any of the pain.

Could this be EDS? She also has lots of other symtpoms too but they overlap with symptoms of her bleeding disorder so I'm not sure if they are related.

[bantam12]

Has she had thyroid blood tests done, if she has one autoimmune condition she is at risk of others.

[cyberbarn]

It does sound like she could have EDS. My son has pain on the bottom of his feet too, and it took us several years for anyone to take it seriously.

Have you seen a podiatrist? They are the experts at lower limb problems and can analyse gate and recommend insoles and supportive footwear.

And as for growing pains, it is basically saying we don't know what is causing the pain. There is little to no evidence that children are in pain as they grow, but there is good evidence that is mounting that children with 'growing pains' have a hypermobility disorder.

Next time a physio suggests growing pains perhaps you could ask them for the peer reviewed evidence that children should be in pain when they grow. It might get them thinking about things differently.

[lily82]

She hasn't by any chance had any illnesses?

(Not to scare you, but this is just a example) I have EDS but I also had Rheumatic Fever from untreated Strep, as a child which caused muscle weakness, gait issue etc. I was labelled with 'growing pains' but I was in agony.

They Chorea from the Strep caused hyperflexibiltiy in my hands and wrists.

I'm not saying your daughter has anything as drastic as this- but multiple conditions can cause the same symptoms.

There's no reason a child could have a few things wrong.