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Linda E: Mother of En Coup de Sabre and Morphea Patient

We need to get her to a rheumatologist right away.

My daughter, Kate, was diagnosed with morphea in May 2002. She is nine years old now.

Last summer I noticed what I thought was a really big bruise on the right side of her stomach. I asked her if she had been hit by anything that she could remember and she said no. She is a pretty active kid so I did not think any more about it.

Five weeks later I noticed that the bruise was still there so we went to a pediatrician who referred us to a dermatologist. The dermatologist basically said that it was no big deal and could not remember the name of what he thought it was. I was not happy with this response so we went to another dermatologist who looked her over with a black light so he could see if there were more spots forming under her skin. He got out all his medical books and showed us pictures and said that he wanted to see her whenever she got a new spot.

About a month went by and we did notice more. She now had two on the right side of her back by her shoulder blades and another one starting on her right arm. She had also developed a line starting at her hairline just to the right of her nose and going down to the top of her nose. So we went back to the doctor. He said that this was called en coup de sabre.

Everything was going fine and she did not hurt anywhere, but some kids at school were starting to notice her forehead and making jokes about it. We went back to the dermatologist yesterday and he came in the room, looked at her and said, "We need to get her to a rheumatologist right away." That really scared me. He seemed very concerned because she had developed another spot on her forehead.

I am very nervous about this rheumatologist appointment that we have on January 15th. I don't want her to be poked and prodded if nothing is going to help. I guess I do not know what to expect. I know that there is no cure for what she has and I think that Kate, my husband and I have adjusted to that. I guess I will find out what happens next.

Kate has been reading some of the stories on this website and I think that they are helping her to realize that she is not the only person who has this. I will keep you posted on what the doctor says at the next visit. Thanks for reading my story. It helps to share it. I am still scared, but hopeful.

~ Update 1-17-03 ~

We had our first rheumatologist appointment on Wednesday. The doctor talked to us for almost three hours. She explained everything to Kate. The doctor said that if Kate had another type of localized scleroderma, she probably would not treat her at all and just let the disease run it's course, but she said that the line on Kate's forehead could move down her face or further into her head and cause bone deformities.

So she prescribed Prednisone and Methotrexate. She said that Kate might get puffy from the steroids and that the Methotrexate could make her sick to her stomach. She also said that Kate's appetite will be increased so we will have to watch what she eats.

This is exactly the kind of thing that I did not want to happen! I do not want Kate to become a different person because of this disease! But what are my options? We could either just wait to see if it spreads, or we could try to put a stop to it. I am very sad about this whole thing. I just about cry every time I give her the medication.

Well, that is it for now. We go back in two weeks for blood tests. I will keep you posted.

~Update 3-11-03~

Kate has been on prednisone and methotrexate since January. We had a rheumatologist appointment last Wednesday and we can start to lower her dosage of the prednisone finally.

She has gained eleven pounds and is constantly harrassed at school because she is fat. She comes home just about every day and cries but she does not want to tell them why she has gained weight because then she thinks she will have to explain the whole disease and she does not want them to know about her spots because she will get teased more.

I hope that when she is off this medication she will lose the weight that she has gained. It would make her feel better. She is a very beautiful girl who never says anything bad about anyone and she does not deserve this.

Anyway, she has had no more spots show up that we know of so that is one good thing. The doctor has increased her dosage of methotrexate and we go back to see her in a month.

Can anyone who has been on prednisone tell me what happens when you get off it? Does your appetite go back to normal?

I will write after her next appointment. Any insight to this weight thing would be greatly appreciated.

~ Update 8-5-03 ~

Kate is doing much better. She is off the prednisone and has lost all the weight that she gained while she was on it. She is still on the methotrexate. She takes it once a week. Her lesions are barely visible now and the en coup de sabre is less noticeable. People who haven't seen her in a while don't even notice it.

I am not sure that if the morphea flares up again that I would do the steroid again. It was very hard on her but it seemed to work. Her rheumatologist said that she may be on the methotrexate for a year or longer depending on how she tolerates it but so far she is doing well. Her doctor appointments are down to once every three months. Her next one is in September. After that if no more lesions develop her next appointment will be in six months.

I am hoping that the worst is behind her and that it does not flare up again. Thanks to everyone who has written to me. It really helps a lot to talk to people who understand what you are going through.

~ Update 3-29-04 ~

Kate is doing much better. The lesions on her back are barely visible any more. The large one she had on her stomach is still there, but it is just indented, and no longer discolored. Her forehead is also doing better. It has not grown in length, width, or depth. She is still on the methotrexate and could be on it for up to five years, but she seems to be tolerating it okay.

She is at a different school now and no one there knows anything about her disease unless she wants them to. She has made some very good friends and is doing quite well. This disease has taken a little bit of her spark away, but I think she will be okay. It seems to have just become part of her now.

I want to thank everyone that has written me. It really helps. If I can help any one in any way, please do not hesitate to write to me.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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