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Ehlers-Danlos Support UK
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About my son...

Hello, I wonder whether anyone could tell me whether it sounds as though my 9 1/2 year old son might have EDS, or something similar?

Clumsy / poor coordination

Tires easily (physically) / seems very unfit

Unable to ride a bike

Vertigo (struggles to walk down gentle slopes & panics on jetties, near heights etc.)

Bloating and bowel problems

Always twisting ankles etc.

Very sensitive to pain

Slow-healing skin

Struggles to recognise people he knows when seen out of context

Lumbering walking / running gait

Constant mild phlegmy cough

He doesn't seem particularly flexible in his joints, but his little sister is.

He's doing really well at school and has a wonderful memory. He is terrible at all sports (unless chess counts :) ).

He's basically well in himself and no one else has ever expressed any concerns about him. The only thing I've taken him to the doctor about are his bowel issues.

I know that no one can diagnose him over the internet, but I thought maybe someone familiar with the symptoms could help me decide whether I'm worrying unnecessarily or not!

Many Thanks

Annabel

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It is possible. I was just wondering if EDS runs in the family?

Have you spoken to a specialist about it? I hope you get the answers you are looking for

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Thanks for your reply Morespoonsplease.

As far as I know EDS doesn't run in our family, although we do have some weird autoimmune/genetic things going on. His little sister is completely different from him (very agile and sporty) but she has extremely noisy, clicky joints all over her body and hyper flexible in some.

I've never spoken to anyone about it, other than the GP about his bowel problems. I'm worried about coming across like a hypochondriac as he is, as I say, basically fine.

Thanks again :)

Reply

It sounds like a referral to the community paediatrician might be in order. Have you seen the RCGP EDS toolkit? Have a read up of it yourself and show it to your GP, and that might get the ball rolling.

In additional to EDS there are other things that some people with EDS also have such as neurodevelopmental difficulties like autism, sensory integration problems, and so on.

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Thank you Cyberbarn, have had a quick look and will read properly when I have more time (I'm at work). Would you say diagnosis is important as I've just read that most people tend to just manage the symptoms themselves without much intervention from GP or medication etc.

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Most people can manage themselves, especially if they have the diagnoses! The diagnosis is helpful in signposting to the right services. There are differences in things, like physio, where it is better to know and have the diagnoses because then they can do things differently. Then there is being believed. I don't have the formal diagnoses in my notes, (GP refused to do it) so the physio didn't believe that I had it! As you have noticed he has slow wound healing, so if he had surgery or a deep cut that needed stitches, it would be best to have non-absorbable ones. But will they listen to you in A&E when you tell them that if the diagnoses isn't in the notes?

With the neurodevelopmental stuff there are interventions that can be really helpful. For instance there are exercises that can help their brain develop so that they aren't so clumsy. And although he is doing well at school now, he might struggle later and need more support and understanding.

So yes, while many people can self manage, that doesn't mean that a diagnoses isn't also useful.

Reply

Unfortunately you are correct your son cannot be diagnosed over the internet but you could make a start with a rheumatologist who should then refer you to an EDS specialist in your area.

My daughter was 16 when she was diagnosed she does have severe symptoms and dislocates easily in every joint she always fell when doing sports was put down to being clumsy and even lazy. She also hasIBS which is also a symptom she has what is called cigarette skin like ciggaret papers /tissue. Her ability to walk any distance is a real issue as her ankles swell she is flat footed and has calices on the bottom of her feet. She has had suits made by our rehabilitation team with rods down each side but because her body does not make collagen when she took off the suit she found the muscles would not support her skeleton. Making the issues worse also be careful of physiotherapist who do not know EDS and are not trained for EDS patients can indeed make the situation much worse and the condition much more painful and do more damage than good unintentionally of course.

She has like your son a multitude of health issues she is now 22 and a very intelligent young woman. About to go to university to study equine management and become a lecturer as she has only every been able to excercise from a sitting position hence her relationship with horses. I wish you well for his future.

If you do get a diagnoses you will also be entitled to mobility and carers allowance and living allowance. Please if you qualify do apply because this will allow you to get swimming lessons riding lessons all sorts of therapy for him because as he gets older you may find his confidence is massively affected. If I knew then what I know I would defiantly have made sure he socialised more. All the best.

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