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linear scleroderma en coupe de sabre

daughter diagnosed

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8 replies to this topic

#1 rachelw

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Posted 12 December 2012 - 01:05 PM

My 8 year old daughter has just been diagnosed with en coupe de sabre after trying to get a diagnosis for 4 years. We're just starting out on the process of seeing specialists.

It would be great to get some advice from people with the condition as I'm unsure of if it's going to worsen or affect other parts of her head.

Also any advice on what treatments have been tried that work.

We're in Berkshire so local support would be great. Thanks

#2 judyt

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Posted 12 December 2012 - 01:17 PM

Hi,
Very sorry to hear that your little girl has en coup. It is so worrying when your children are ill isn't it.

I personally don't have any experience in this area but we have a number of people on the Forum who do and somebody is sure to join in soon with some advice.

Best wishes to you and your little girl.

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#3 Joelf

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Posted 12 December 2012 - 02:07 PM

Hi Rachel,

Welcome to these forums and I'm sorry to hear that your daughter is suffering with en coup de sabre.

It's a good thing that you are going to consult a Scleroderma specialist as this is very important and I've included a list of UK specialists.

I've included a link to our page on Treatments and also a link to another recent thread which I hope will give you some more information. We also have a page on Juvenile Scleroderma:Overview of coping with a child's chronic illness and we do have other members who have children with en coup de sabre and they may be able to give you more first hand help and advice.

Now that you've found our forums and joined our community, please do keep posting and let us know how your daughter gets on with her specialist appointments.

Kind regards,


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#4 Amanda Thorpe

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Posted 13 December 2012 - 03:33 PM

Hello Rachel

Welcome to the forums although I am sorry your daughter has a diagnosis of scleroderma.

Scleroderma is something of an unknown quantity in that, it affects everyone differently so it is almost impossible to tell someone what to expect. The one thing I can tell you is that en coup de sabre is not a systemic form of scleroderma and does not therefore effect the internal organs or reduce life expectancy.

Treatment with a scleroderma specialist is the best thing you can do for your daughter as well as make contact with other people with scleroderma so that you can receive support. I don't have children of my own but would imagine seeing your young daughter ill with a disease that could change her appearance must be mortifying.

The Scleroderma Society provides caregiver resources and you don't have to be a member to use them. You need to keep well to help keep your daughter well.

Take care and keep posting.
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#5 rachelw

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Posted 14 December 2012 - 10:29 AM

Thanks to everyone for their kind replies. I will let you know how we get on.

#6 rachelw

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Posted 26 January 2013 - 05:57 AM

We have seen our consultant and my daughter has had 3 high doses of steroids and has started methotrexate.

All going well so far and adjusting to the new lifestyle. It would be great if I could chat to and maybe meet up with someone local who has this condition.

Friends and family are very supportive but it would be great to share experiences with someone.

Also any advice on alternative therapies? I've heard vitamin D supplements are good.

#7 Amanda Thorpe

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Posted 27 January 2013 - 08:17 AM

Hello Rachel

I am glad that a treatment regime is now in place and hope it brings improvements but as you no doubt know, these things take their time.

Have a look at the Scleroderma Society local groups to see if there is one in your area, you do not have to be a member of the Society to make use of this resource and it's free.

With regards to supplements/ therapies etc you need to discuss this with your daughter's consultant so that her medication can be factored in whereas any answer given here won't necessarily, in addition some supplements can interfere with the absorption of drugs.

Take care and keep posting.
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#8 Joelf

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Posted 27 January 2013 - 08:42 AM

Hi Rachel,

I'm very pleased to hear that your daughter has been to her appointment with her consultant and has been started on a treatment program.

We do have a medical page on Scleroderma and Alternative Therapies; however, as Amanda has said, some of them can interact with the prescribed medication your daughter is taking, so they should be viewed with caution and shouldn't be taken without your daughter's consultant's say so.

Kind regards,

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#9 Amanda Thorpe

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Posted 14 February 2013 - 11:17 AM

Hello Rachel

 

How'd you get on with contacting a local group? As it happens you can come to mine! I cover Essex, London and Kent and you don't have to be a member of the Scleroderma Society and it's free! We meet again the last Saturday in May and you are most welcome to join us. My husband is the Caregiver resource for the Society and runs his group simultaneously to mine.

 

If you're interested PM me, if you're not no worries!

 

Take care.


Amanda Thorpe
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