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Daughter just diagnosed

en coup de sabre

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#1 simpson72

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Posted 18 August 2014 - 05:32 AM

Hello - I'm new to the group.  My daughter (9) was just diagnosed by her dermatologist with plague-type morphea.  She has a 2x4 in dark patch on her forehead with an indentation that runs up into her hairline.  After doing some research, it appears to be "en coup de sabre".  She is going to see a specialist on August 27, but I am desperate to learn more about what type of testing she may go through as well as potential treatments and outcomes.  Any information/advice would be greatly appreciated.

 

~jena



#2 Joelf

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Posted 19 August 2014 - 01:17 AM

Hi Jena,

 

Welcome to these forums!

 

I'm sorry to hear that your daughter has been diagnosed with En Coup De Sabre; it must be very worrying for you and I've included a link to our medical page to give you some more information.

 

We do have other members with children who have been affected by this disease; I've included a link to one of our Patient and Caregivers stories Robin M: Daughter with Linear Scleroderma En Coup De Sabre and also an earlier thread on En Coup De Sabre which I hope you'll find helpful and informative.

 

Please do let us know how your daughter gets on with her specialist appointment on 27 August.

 

Kind regards,


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#3 simpson72

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Posted 19 August 2014 - 02:05 AM

Thank you Jo for the warm welcome and information.  I have read just about everything I could find on this site and found a lot of it very helpful.  However, I am extremely nervous and worried about what the future holds.  We have 1 more week until my daughter's appointment where I hope to have all my questions answered and receive good news.  Until then, I will continue to search for answers to some of my questions.  If anyone can help with the following, that would be very much appreciated.

 

- What tests might they run on my daughter?  Blood work?  MRI? Cat scan? I know a biopsy is a possibility.

- Are there any statistics on the effectiveness of certain treatments?  I've read that methotrexate and steriods are common medications, but can't find data on their effectiveness.  I am also concerned about potential side effects.

- I am hoping the specialist can answer this, but I want to know what stage/how far along my daughters' disease is.  Is there a way to tell? 

- I've read that it is difficult to differentiate between En Coup and Raynaud's and am concerned she may end up having the latter.  Does anyone know of any way to determine what she has?  I've read about differences in the tongue and occular issues, but that seems to be all I can find.

 

Finding this forum and reading a lot of the threads has been very helpful, but also very scary.  Taking this one day at a time...

 

~jena



#4 Amanda Thorpe

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Posted 23 August 2014 - 02:46 PM

Hello Jena

 

Welcome and I am sorry about your daughter. I take it you mean Parry-Romberg's rather than Raynaud's in the last question?

 

Here's the problem, there is no clear answer to many of your questions, in particular the efficacy of methotrexate. The only way to decide whether a treatment works is to try it, the only way to decide which is worse, the symptom or the side effect, is to try it. Bearing in mind en coupe de sabre can disfigure I would have thought some serious side effects would have to beat this.

 

A lot of scleroderma is a gray area, what works for one doesn't for another, what happens to one doesn't happen to another and perhaps most frustrating of all is that what one doctor thinks another most certainly does not. We call the systemic form a tailor made disease, those with it snowflakes as everyone is so very different.

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I appreciate you are looking for something concrete to go on but there's precious little of it when it comes to scleroderma. At some point you have to make a decision based on the information you have rather than searching for more of it. If the doctor is a good one then they will be able to help guide you and advise you. 

 

I have had diffuse systemic scleroderma for 7 years now and I understand wanting things cut and dried. Taking things one day at a time is a very good idea, scleroderma will make sure it gives each day plenty worry of its own for sure! We don't need to borrow any from tomorrow!

 

Take care.


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