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greebark

Linear Morphea - 12 year old daughter

9 posts in this topic

Hi,

 

My 12yr old daughter has suffered from linear morphea for 2 years (it's on both legs and affects her muscles); our local hospital has tried unsuccessfully to treat her with topical steroids and since September methotroxate, which she has had to stop taking because its affecting her liver. I am really worried as she has stiff joints in both her hands and her arms feel hard to the touch, should she be seen by rheumatology? The hospital don't really know how to treat her and just refer to books and keep saying the morphea will burn itself out after several years. She's back at the hospital on Friday and any advice anyone on here can give me would be greatly appreciated. :(

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Hello Greebark,

 

Welcome to the Forum. I'm so sorry your daughter is having these problems. It's tough to deal with it emotionally when it is your child. You'll be in my thoughts.

 

In answer to your question, I would say she should absolutely be under the care of rheumatology. A pediatrict scleroderma expert would be best, but failing that, a scleroderma expert would be my next choice. A pediatric rheumatologist would be preferable to a general rheumatologist, I'd say. Here is a link to EUSTAR rheumatologists (scleroderma experts), arranged in alphabetic order by country, you'll need to scroll down to nearly the bottom. There is also a UK Scleroderma Study Group list on the UK Scleroderma Society's website.

 

We've got pages on Juvenile Scleroderma and Morphea/Linear Scleroderma that might be helpful to you, especially if you need to push for a referral to be seen by a scleroderma specialist.

 

I hope you'll post often and let us know how you and your daughter are getting on.

 

Warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Greebark,

 

A warm welcome to these forums to you and your daughter!

 

I'm so sorry to hear that she's suffering with Morphea/Linear Scleroderma; it must be very worrying for you.

 

I agree with Jeannie, it really is important to consult a Scleroderma specialist as it's a very complex disease which sadly many consultants and rheumatologists know very little about. Jeannie has given you a useful link to help you to find a Sclero expert and I would certainly push your doctor/local hospital for a referral. I'm afraid that the advice from the hospital you are attending is not an awful lot of help to you and doesn't instill much confidence over the treatment they have suggested. Personally I have received very good treatment from the NHS but would emphasise that you do need to be your daughter's advocate to ensure that she sees the correct specialist even if it involves you having to tell them their job! ;)

 

Do please post again and let us know how you and your daughter get on with Friday's hospital appointment.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Greebark,

 

Oh absolutely. There you go, from the UK, USA and Australia, definately a rheumatologist.

 

You have had excellent advice from Joelf and Jeannie.

 

I wish you and your daughter all the best and thinking of you

:emoticons-group-hug:

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Hello

 

Welcome to the forums although I am sorry it's because your daughter has morphea. I can't add much as you've already been given excellent advise. Whatever your daughter is facing she has the benefit of a mother doing her utmost for her best.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Greebark

 

With a daughter so young a Sclero expert Rheumatologist is not much to ask for.

 

My heart goes out to you.

 

Gil

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Hi

 

Thanks for your replies, the websites you recommended were a big help.

 

Funnily enough when we went to our local hospital (I took a print-out with me of the specialist near us) the dermatologist said he wanted her referred to a children's rheumatologist who specialises in this disease and does research into it (the 1 on my print-out). If only he had done this 2 years ago it might not have spread all the way down her legs.

 

Only problem is there is an 18 week wait to be seen, so were back to using topical steroids which cause stretch marks!

The hospital have tried so many different creams that didn't work, we had to stop methotrexate because it was affecting her liver, prednisone works but she can only take it for 5 weeks at a time. :emoticon-dont-know:

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Hi Greebark,

 

Could you ask to be put on a cancellation list? You never know, you might get lucky. We'll all be hoping for the best and a doctor your daughter loves! :)


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Greebark

 

Excellent outcome although there's a long wait involved. Jeannie's idea is a good one, maybe get a cancellation?

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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