4yr old with localised scleroderma

Hi I'm new on here! My 4yr old daughter has just been diagnosed with localised scleroderma. She has four patches altogether under both arms and on both hips. She started oral methotrexate yesterday and has to go back to alder hey in august to start an iv steroid regime. It's all a bit overwhelming at the moment. Is there anyone else with a child who has this?

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  • Hi there, my daughter has systemic scleroderma (affects all organs, not just the skin) and started on oral methotrexate and steroid tablets at around 6 years old. It first presented itself via hard patches on her thighs at the age of 4, and so far (we hope!) has not spread to other parts of her body. She has regular tests/scans etc to check what's going on with her other organs, plus physio and OT sessions every few months.

    We had real problems getting her to take the methotrexate tablets, so our consultant changed her to injections instead. She doesn't like them either, but at least it's a nurse doing the injection and not me trying to persuade her to take the tablets (which was sometimes an hour-long tearful battle for both of us no matter how much I tried to keep calm!).

    It has been a real journey of ups and downs (she is now 12), but overall she is healthy and happy so my advice would be to try and see the big picture. There may be moments when you wish your daughter didn't have to go through all this (and you'll ask 'why us?' or 'did I do something to cause it?') but you need to just keep going, be thankful that she's in good hands, and try not to let the scleroderma become a big feature of her life. (I used to talk about my daughter as though scleroderma was her middle name until I realised that there were so many other things about her I should be drawing attention to - she's creative, funny, kind etc.).

    In the end I think she's a stronger person as a result of everything she's been through, and I've learnt a lot about myself.

    Sorry - I'm waffling! But I hope some of this helps.

    Alison x

  • Localised Sclero is nothing like Systemic and I thought the UVA1 light therapy was the up to date treatment for that and Morphea. Use google to do some research and find out everything you can.

  • Hi Mum2threegirls,

    I'm a 26 year old male who was diagnosed with localised scleroderma as a child. My patches grew to be quite extensive, covering most of the right hand side of my body.

    It must be a very overwhelming time for your and your family right now. A few bits of personal advice/experience that might help you:

    I think the differences between systemic scleroderma and localised scleroderma are becoming more apparent to medical professionals, from what I understand current thinking is that they are most likely totally different diseases. Try to approach your daughter's condition with that in mind.

    Also bear in mind that scleroderma really does affect every person very differently. The points I write below are mainly due to linear scleroderma and morphea, and even if she has those doesn't mean she will be affected in the same way.

    I was on methotrexate for a number of years but reacted badly to it as it made me very nauseous. I ended up seeing Professor Carol Black's team in London's Royal Free Hospital. I cannot recommend them enough. It's a bit of travel but they are experts on all forms of scleroderma. She ended up placing me on mycophenolate, an immunosuppressive, which I had no adverse reaction to.

    My disease eventually went into remission after being active for 4/5 years. I think it is commonly accepted that localised scleroderma will go into (hopefully permanent) remission after a few years. Whether or not my disease went into remission because of the medication, or just did so naturally, I cannot say.

    My biggest advice is - physio physio physio. The single most beneficial treatment for me by far was physiotherapy. It is essential for keeping joints mobile, skin supple and muscles strong. If your daughter does end up with contractions in her fingers/joints, physio and occupational therapists can use splinting or plaster casting to straighten them out again. My fingers used to be almost totally contracted so that I couldn't straighten them, but thanks to splinting I have about 70% movement back.

    I also had the ultraviolet light therapy. It gave me an amazing tan, but I don't think it did anything to halt disease progression. However I can say that exposure to heat/sunshine loosens your joints and skin up a bit.

    The fact that disease has been caught and diagnosed really is positive news, fingers crossed your daughter has an excellent future ahead of her. I hope this has helped rather then hindered your feeling of being overwhelmed. If you want to discuss anything further let me know!

  • Thank you for your replies

  • Hi my daughter has been diagnosed today with Morphea by a dermatologist. We haven't had it confirmed by biopsy yet she is 14 and saying she doesn't want one. I was so scared that she had cancer because it looks like nothing I have seen before. At he appointment I was relieved but now as I look this illness up I am concerned again.

  • Hi mellis mum. I have just replied to your post. Please don't worry too much. Morpheoa generally affects just the skin, occasionally it can affect the muscles, joints etc underneath. My daughter didn't have a punch biopsy just dx by it being looked at. It usually becomes inactive (stops spreading) within 3-7yrs but treatment can speed that up. It may be worth askibg for a second opinion from a paediatric rheumatologist who specialises in scleroderma. Good luck

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