Son diagnosed today

[Teri80]

My 9 year old son was diagnosed with linear scleroderma. It affects his hand arm and back. His finger is particularly bad and has no flexibility at all. He starts with steroids on Monday was hoping someone could give me some idea as to what to expect. Thanks

[dramatic]

Hi sorry to hear about your son. my daughter has had linear scleroderma affecting her leg since the age of 6 ( now 15). It can seem daunting at the beginning. She has had 3 separate periods of treatments due to flare ups and remission over those tears. Currently on treatment but scleroderma is not active - treatment lasts for a period afterwards to try and dampen it down for the future but she has had time off treatment.

She has been through steroids (IV pulses) and has had different immune suppressant treatments, twice methotrexate which worked well but she hated the injections and the tablets made her sick so she swapped to mycophenalate this time and this has also worked well with no side effects. The steroids are to work quickly to reduce active inflammation, the longer term medications to suppress the over active immune system. The steroids give her a funny taste in the mouth, her face flushes and she does feel tired and washed out. It usually lasts 24 hours we just let her rest- take some mints to suck whilst he has the infusion.

Early intervention I believe is really important because it gives the best chance of recovery. Some children have no flare ups after initial treatment, others like my daughter do and some it can be a struggle to manage. My daughter despite having flare ups has responded well to treatment and has had skin softening as a result of treatment . One of the best bits of information I was given was don't expect a quick fix, it is a long road as the drugs to take time to get in the system. For his ginger I'm sure they will have arranged a physio/OT this will help. Ask school about support with writing and breaks if it's his dominant hand.

We go to Leeds/York where do you go? There is a Facebook support group for parents of children with scleroderma which is helpful and will connect you with other parents.

Good luck !

[Teri80 in reply to dramatic]

Thank you for your help, we are in Glasgow. Glad your daughters doing well. After the steroids he will be starting on methotrexate. Luckily the school are very suppprtive although he's just got diagnosed it's a problem he's had for over a year we just didn't know what it was so he gets breaks or to use an iPad if needed. I was told the steroids could make him hyper! As you can imagine last night was spent awake looking for every bit of information the internet has to offer lol. Did you change your daughters diet in anyway? Also if you don't mind me asking how did your daughter mentally deal with it all my little man is quite anxious anyway and we're finding this past month he's become very emotional thanks I will have a look at the fb page x

[dramatic in reply to Teri80]

Hi sorry been at work all day. I'm glad the school is supportive. We haven't changed her diet but she is pretty healthy with it anyway. She struggled with the methotrexate but has been fine on the mycophenalate. She is a bit bothered about her asymmetry mainly because she dances so it can be seen when she is in leotards but she doesn't let it stop her. Thankfully it isn't too bad but she is aware so is conscious. She did have some psychological support to help her with the injections because she did find them painful, the bloods and steroids didn't bother her at all. I am in a private group chat which includes some other people who are in Scotland, it may help you to have contact with them as well. If you want to join pm me and I can add you in. Xx