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dawn

Scleroderma And Children

27 posts in this topic

Carolyn,

 

Hi. I have been away from the computer for a bit. Sorry it has taken so long to write you.

 

My daughter was on methotrexate for a little over 2 years, she was 6 years old and in kindergarten. Recently we thought her L. scleroderma was spreading and she was started back on MTX in October when she was 9 years old. For the 2 years she was on it she never had a problem but in October she got a luekopenic - once the MTX was stopped the body corrected the low WBC level with out a problem.

 

The scleroderma was found not to be spreading (by biopsy) so we didn't have to restart it again. We (my husband and I) wouldn't have a problem using MTX again if her linear scleroderma started to spread. She was a little cranky and tired the day after but we never had any problems with it. At this point she barely remembers getting the shots of methotrexate when she was 6 & 7. She was on 25mg/1cc injections once a week.

 

Before people/kids would ask her why her foot was purple but it is mostly faded now if I didn't tell you, you probably wouldn't even know she has L. scleroderma and the morphea on her hip has disappeared -I can't even find it.

 

I used to give her shots in the middle of the night (2 and 3 am), she would have a little wimper but mostly didn't remember that I had given her the shot in the morning. You give it with an insulin syringe so the needle is very fine and short.

 

The best advice I can give you, is follow your heart and have a good doctor that will monitor your child closely. The right thing for your child isn't always the easy route to take. Methotrexate was a success for her but broke my heart to give her... and hopefully it will continue to be a vague memory for her.

 

It is helpful to chat with other parents that really understand the agony this disease causes the whole family!

 

Keep in touch.

Dawn

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Hi again Dawn. Thank you so much for the information on Methotrexate. I've come across a few people who have had their kids on it without any side effects. This is definitely encouraging news, as the specialist scared the pants off me with his list of side effects!! We may have to go on to our third specialist, as this one seems very unwilling to treat the morphea with anything other than Diprosone. He believes it is fairly superficial and unlikely to cause any bone growth problems etc, but the fact that it is spreading across his face is of great concern to us......especially if he's wrong about it causing permanent damage!! I might have to pull out the old line.."What would you do if this was YOUR son??"

 

Anyway, I'm busy googling specialists in my area and will hopefully come across someone who has had a bit of experience with it.

 

I'm so glad your daughter is going well and that her injections are a distant memory. It's been such a comfort to hear from other parents who do understand exactly how I'm feeling.

 

All the best for a healthy happy year!

 

Carolyn

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