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5yr Old With Poss. Sclero....questions....please

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Hello everyone, I hope you dont mind me intruding!


I am searching for information before our next rheumatologist visit.


I have four boys, all have Ehlers-Danlos syndrome (EDS), a genetic collogen defect. It runs in my family, my mum and brother have it and they think I do also.

EDS is commonly know to have many neurological and auto immune things associated with it.


We also have multiple autoimmune diseases on my mums side, she has hashimotos, rheynauds, rhumatiod arthritis, COAD, poly something, alopecia totalis, fibro, a few other things yet to be diagnosed, and asthma. Needless to say she isnt in a good way.


One of my boys, my 5 yr old, started to develop a strange line of blonde hair around his head, approximately 8-10 mnths ago now, it started at the back and worked its way around both sides now. it is like he has been wearing a baseball cap and it has marked his hair with bleach, except obviously it isnt bleach and it goes right to the skull, the hair also feel a very very soft downy feel, like wool kind of.


The line is perfectly straight, couldnt be any straighter! It is quite blonde, almost white compared to his other hair also.


We also noted (not sure if related) that he had a lump on the top of his ear at around the same time, it was like a bruise, like he had badly bumped it, it went all red and purple and swelled up, then it proceeded over weeks to tone down to normal skin colour but the lump stayed but went very very hard. We did of course see the doctor but he said not to worry.


Since then it has now spread, there is a large area of his ear that is now hard to the touch, like it has bone inside it now instead of cartilage. His ears used to be extrememly soft and floppy, as due to the Ehlers-Danlos it causes the skin to be very soft and very floppy, most with this disorder have hyperextensible skin and joints, my son does to a huge degree.


His ears always used to be like soft cloths, you could almost squish them up or screw them up, they bent any and everyway! now that part of his ear on one side doesn't bend at all.


We had also noted that he has become alot paler over the past year or so, ad looks a tad sickly. We also did note somehting about his face but we always wonder if it is just our imagination and not really anything to worry about!


We felt that his face shape was changing, it was almost like his nose is sinking, his upper face is either not growing or sinking in referance to the rest of his face (i.e. his mouth etc), as his nasal bridge is receeding and his nostrils are starting to almost point so that you can see his nostrils clearly and almost right up his nose. This is not a familial trait in my family, our noses do not turn upwards, it kind of makes his nose have that pig look (sounds terrible but I am trying to describe it so you can understand).


Anyway, thats my son, what do you think?

Could the rhumatologist be on the right track thinking that he may have scoleoderma? My son also has many other issues with hypertonia, dysphagia, dysgraphia, joint hypermobility, chokes, cant chew properly, etc etc, but most of these were put down to the EDS.


I just want to get opinions or if anyone knows of any literature that points to this strange hair colour change in specific and what immplications it can have on his face and skull would be great also!

Thanks so much for taking th etime to read my post and reply :)



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Hi Cindy,

Welcome to the Sclero Forums! I have sclero and I have a daughter that has a definate EDS diagnosis with neuro issues and my other daughter more than likely has EDS but never showed signs of other issues so we never had a definate diag on her but she is more flexible than the younger one.


I haven't heard of any one describe what you are talking about, but hopefully the rheumatologist will have some insight and be able to run the necessary tests to diagnose your son correctly.


Please let us know what happens at the appointment!




Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Cindy,


Welcome to the forums. I am so sorry you are struggling with these issues with your son. I am certainly not a doctor, but what you describe does not sound like typical manifestations of scleroderma. I don't know how much you have read about it, but here is a link to our main medical page on our Sclero A to Z website. From there you can explore lots of different topics. Maybe you will read something here that "clicks". I do hope you can get some answers soon.


Warm wishes,


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Welcome! Please don't feel like you're intruding. This is a public forum for anyone that needs information or support. We're glad you've joined us.


Heidi has provided a great link in which to search for answer to some of your questions. After reading your posting, none of the symptoms you describe sound familiar to me as being symptoms of scleroderma. It's always best to bring up all symptoms to your rheumatologist. As you already know, the rheumatologist has the training in many of the autoimmune diseases so that's your best source.


I hope you find out the cause of these symptoms and there's nothing serious going on. Please let us know what you find out.


Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Cindy--


Welcome. Everyone here loves to help, no apologies necessary.


I'm not a doctor and have absolutely no knowledge of your son's condition. But something I do know from having been an athlete (not even close anymore). There's something called cauliflower ear which wrestlers get and sometimes football players.


It comes from repeatedly injuring your ear from rubbing or bumping it. After a while the ear gets all collagen packed and hard. Looks a bit like "cauliflower". Injury leads to fluid and scaring and then a hardened state.


Perhaps your son injured it, or because of his condition, it injurs easily. Hardness would be a likely result of something like that. Just a guess not trying to minimize, just throwing it out there.


Also, Scleroderma skin involvment is usually symetrical or bilateral, at least with the systemic form of the disease.


I'm sure you are so worried about your little boy. I hope you can rush in to see the rheumatologist soon just to stop what must be agonizing worry. I don't know if you can, but second and third opinions will give you more confidence in what they tell you.


Michael In Florida

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Thanks so much for all your opinions and information.

I have done a lot of reading in the past week about sclero. but obviously my informaiton that I have read is quite small in reality! theres just so much to read!


The rheumatologist thinks that the hair banding is possibly Sclero. I havent mentioned the other things to him yet so I was just speculating with those.


He seems to think that the hair thing might be an under the skin sclero that the hair is slowly dying, i.e. turning white first then will fall out I guess. His other sugesiton was a form of alopecia, which yes my mother does have autimmune alopecia, but this banding is not ever seen in alopecia, that it is a perfect even leve ring around the head, so not sure that that one is relevant.


I guess maybe he thought it might be sclero as in a linear type? dont know I guess I will find out soon enough! I will come back and post what he says about it.

He is a very well known rheumatologist form England originally I believe and one of the top noted doctors with EDS and similar disorders, so hopefully he also knows a bit about the sclero....


thanks again for all your help :)

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