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Jo: Mother of a Child with Morphea Scleroderma

I am so grateful that there are sites like this where I can get information.

Wooden Bear, Photographjy by Shelley Ensz During the summer of 1999, we noticed that our daughter had a blotchy, purple-red rash all over the lower part of her left leg. After a trip to the local dermatologist, Rachel was given the diagnosis of dermatitis and some cortisone cream to apply to the area. This did nothing for the rash. This rash did not seem to bother Rachel, so my husband and I assumed that, perhaps, it was some sort of allergic reaction as the dermatologist had suspected. My husband and I both have allergies and assumed that our daughter had inherited them. The dermatologist had suggested allergy testing when she got a little older, and we were going to follow up with that.

As the summer turned into fall, we noticed that Rachel started to experience some stiffness in her knee and, coincidentally (or so we thought at the time), it was in the left knee on the same leg as the rash. After trips to an orthopedic doctor (who diagnosed psoriatic rheumatoid arthritis) and a rheumatologist (who diagnosed pauciarticular rheumatoid arthritis), we were referred to a pediatric rheumatologist who thought it was scleroderma.

When I first heard the word scleroderma, I almost fell on the floor. The only form of scleroderma I knew about was the systemic kind, and I immediately thought my daughter was going to die. The doctor took a lot of time to explain morphea scleroderma to us and subsequently confirmed his diagnosis with a skin biopsy.

Rachel is returning to the pediatric rheumatologist in the next few days and will start treatment. The morphea has also spread up the left side of her body, and she now has patches on her stomach, left shoulder blade, behind her left ear, and around her hairline at the nape of her neck.

I am so grateful there are websites like this where I can get information and get in contact with other people who are living with morphea, and particularly from parents coping with a child with morphea.

~ Update - May 2000 ~

Rachel is currently on treatments, which she will take over the next six months with a gradual tapering off. She will continue on methotrexate for about eighteen months. The doctor said that after being off medication, we will look for any signs of progression of the illness and use more medication, if the illness continues to progress. Rachel is also going to physical therapy this week to help with range of motion in her foot and leg affected by the morphea. She will also have some massage techniques on the plaques, or hardened areas of skin. My husband and I will learn these exercises and massage techniques so we can continue them when physical therapy is over.

Other than some puffiness in the face, caused by the prednisone, Rachel really has not had any side effects from the medicines. So far, so good!

~ Update - Early June 2001 ~

Rachel is now off the prednisone and continues her weekly dose of methotrexate. However, the leg that has been affected is still significantly smaller than her other leg. The doctor has some concern over this, as do my husband and I. She may have to have some special lifts (orthotics) for her shoes to make sure her walking is normal due to the size and length differences in the legs.

She will be seeing an occupational therapist and physical therapist at her next doctor's visit in a couple of weeks. The doctor is considering an MRI to evaluate the depth to which the morphea has affected her leg, with respect to muscle and bone growth. I do not like the idea of an MRI because Rachel will have to be anesthetized to ensure she will lie still during the procedure, which is a lot to ask of a four-year-old child!I know it has to be done if that is what is best for her, but I still do not like it!

Actually, I do not like any of it. I would rather cut off my right arm than have a sick child, but we cope as best as we can and always hope and pray for the best.

~ Update - Late June 2001 ~

We saw the pediatric rheumatologist this week as well as the physical therapist. The physical therapist recommended a built-up heel for Rachel's shoe on the affected leg because it is about a half inch shorter than the other. This will help her walk more normally and prevent any problems a length difference can create.

The doctor has also decided to do the MRI within the next month. Based on the MRI, he can decide what type of medication will encourage her leg to grow. He thought he could possibly put her back on the prednisone or other immunosuppressant drugs to help her. He plans to consult with other physicians in Pittsburgh and New York City because they see more cases of this than he does.

So we are just waiting to have the MRI done and we will go from there. Just for a helpful hint to others: check with your insurance before your child has an MRI. If anesthesia is necessary to keep a child still, your insurance may require a letter from your doctor explaining why the anesthesia is medically necessary; otherwise, the anesthesia portion of the procedure may not be covered. Obviously, they have never had to keep a child still for longer than a minute or they would know!

~ Update - January 2002 ~

Rachel had her MRI in October 2001, and the good news is the scleroderma only goes as deep as the fat; there is no involvement in the muscle and bone. We were very relieved and thankful for that news. We had another visit with the rheumatologist in January and learned that the growth difference between Rachel's upper thighs (the affected leg versus the healthy leg) is now only 1 cm., meaning her affected leg has actually grown!

She has grown three-quarters of an inch taller between October and January. I was so happy with this news, I could have cried. The areas on her affected leg have softened significantly and do not seem to be as deep. The skin is not as dry as it once was.

Things are going really well. Thanks to all the people who have emailed me.

~ Update 11-13-06 ~

Rachel has been doing well overall. In fact, she rarely gets sick with any of the normal childhood illnesses. Other than the fact that her left leg and foot are shorter and smaller than her right, her height and weight have progressed proportionally.

We did have a scare last winter. I had noticed that she developed a tan area on the right side of her back near her armpit. Until then, the scleroderma had only been on the left side of her body. I also noticed some blotchy tan areas on her left hand and wrist and pointed out all these changes to her rheumatologist. He felt this was cause for concern, and strongly recommended that we see another rheumatologist, one whose main specialty was children with scleroderma. He had suggested a specialist in New York City, and of course, I came right to this site to try and find all the rheumatologists whose specialty was juvenile scleroderma. It was a huge help, and we ended up choosing Dr. Thomas Lehman of NYC. All the reading I did seemed to suggest that he was an expert in the field with excellent credentials.

I also did more research and was disappointed to find that only one other physician seemed to specialize in juvenile scleroderma on the east coast, and he was at Children's Hospital of Pittsburgh (who by the way was trained by Dr. Lehman!). The only other physicians I could find listed were researchers, and did not seem to have an official office practice.

Although Dr. Lehman did not accept any insurance, his web site stressed the fact that the patient would have a full one hour visit with him (unlike most doctors) and of course we were more than willing to pay the cost to make sure Rachel got the best care available. Having a limited income, I did find a site that does help families with this type of thing, and found them very helpful. They responded very quickly to my e-mail questions, and were also very helpful when I phoned them with additional questions. The web site is the First Hand Foundation and they offer all kinds of assistance for people with children who have medical problems.

Fortunately, I was able to pay for the visit. I cannot tell you how impressed and pleased I was with our visit to Dr. Lehman. He performs all the things a nurse would normally, like weight/height, blood pressure, along with the regular physical exam. He evaluated Rachel from head to toe (literally), even examining her with a light magnifying device over her entire body to make sure he did not miss a single thing. His bed-side manner was excellent, and I was very impressed with how his focus was on Rachel, and making sure he treated her with respect and made her comfortable, joking with her and talking throughout the exam. He also took a detailed history from me, and answered all my questions in depth in a way that I could understand. He voiced some concern over the spot on her right shoulder, as linear scleroderma normally affects only one side of the body.

He wanted further testing done to make sure that the scleroderma had not gotten worse, and had progressed to possible involvement in her internal organs. Needless to say, I was scared to death when I heard this. He fully reassured me that the chances of this happening were 1 case out of 100. But, as a mother, I wanted to hear 0 cases out of 100!

We spent a full hour with Dr. Lehman and it was more than worth the three hour trip to his office in White Plains, NY and the expense of the visit. He ordered an echocardiogram, and pulmonary functioning test, and of course, I was worried sick until the tests were performed. I was ecstatic to learn that both tests were completely normal and that we could just proceed as before with her regular rheumatologist and course of treatment (currently methotrexate).

Our only obstacles now are that Rachel is more aware now of her illness, and that she is different from other children due to this. As she has gotten older she has become more self-conscious of her leg, along with fact that she cannot wear the same shoes as other children, and has to have quite a high lift on her left shoe. It also bothers her that she cannot run as fast, and is not as coordinated as other kids. I try very hard to emphasize her other strengths, such as her intelligence, even going so far as to tell her that being a good runner will only get most people so far in life, but that intelligence will take you as far as you want to go!

The thing that broke my heart the most was when she said to me, "I'll never wear high heels, will I Mommy?"

I tried to reassure her that they were uncomfortable and not good for your feet anyway. But, inside I hurt so badly for her and made a vow that even if I had to have a custom pair made, she would someday have a pair of high heels.

I am sure we will have many more obstacles to face as she grows older, but am thankful for this site, and everyone who writes here, for all their information and support. God bless you all!

To Contact the Author

Jo
New Email: [email protected]
Story posted 4-21-00
Update posted 5-22-00
Update posted 6-3-01
Update posted 6-28-01
Update posted 1-21-02
Story edited 7-17-03 SLE
Story edited VH1: JTD 9-4-03
Email note posted 01-24-05 SLE
New email posted 02-08-06 SLE
Update posted 11-27-06 SLE

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
LINKS
Dr. Thomas Lehman
Morphea Scleroderma
Juvenile Scleroderma
Rheumatoid Arthritis
Scleroderma
Scleroderma Experts

This story is featured in the book
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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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