BJ's Story: Growing up with Juvenile Scleroderma
My son, BJ, was not any different from any toddler until one day in pre-school the teacher reported to me that BJ was having difficulty cutting with scissors and with finger painting. I started to notice shortly after that he wasn't as active as other children, and he was not able to use his hands like other children.
By this time BJ's right fingers were becoming a bit crooked. His pediatrician suspected it could possibly be arthritis. I thought to myself he really never complained of joint pain. Although, we do have strong family history of arthritis, but not in children. How could this be possible? His pediatrician sent us to see a pediatric rheumatologist.
December 1995, the nightmare began for weeks trying to find out what was wrong with BJ. The pediatric rheumatologist ordered a number of blood tests every two weeks. BJ was so terrified of needles it took myself and my mom to hold him down. BJ would try to bite and fight us to get away. It broke my heart to see him this way.
 After the first blood test came back the pediatric rheumatologist wasn't sure what he had. He mentioned to me that BJ could have Juvenile Rheumatoid Arthritis (JRA), Lupus or Eosinophilic Leukemia. When I heard the word Leukemia I thought my son was going to die. I did not know what Lupus was at the time. And generally, when you think arthritis, you think elderly people get this, and not children. I had to wait a month to find out what my son had because the hospital lab kept losing his blood tests.
Finally the nerve wrecking day was here to find out what is wrong with my son. At the age of 4 years and 10 months he was diagnosed with JRA. The pediatric rheumatologist said to me if BJ doesn't take his medication and get physical therapy (PT) and occupational therapy (OT) JRA can be a crippling disease if not treated aggressively.
At the beginning of his diagnoses he was taking a nonsteriodal anti-inflammatory drug (NSAID). This was to relieve some of his pain and stiffness. It appeared that after a months use of an NSAID, BJ was beginning to run a little bit stiff, and he had difficulty getting in and out of a car and his bed. There were times he would get out of bed and fall to the ground because he couldn't walk. BJ said his feet felt like they were twisted. I had to carry him to the bathroom or from one room to another at times.
I had taken BJ back to the pediatric rheumatologist because I was not satisfied with his treatment for JRA. The pediatric rheumatologist put BJ on corticosteriods for about two weeks. Within the two weeks BJ had improved quite a bit. He could get in and out of the car and his bed with no problem.
June 1996, BJ's JRA had turned for the worst. BJ couldn't sit on the floor like the other children in his pre-school class. He couldn't play a lot of the outside activities with the other kids. BJ missed a lot of school from feeling fatigue and from his legs hurting. BJ was starting to have problems dressing his self, brushing his teeth and hair. He started sleeping more frequently. Finally I decided to take him to a different pediatric rheumatologist for treatment. The new pediatric rheumatologist agreed BJ had JRA. He decided to increase BJ's medications to NSAID and an disease-modifying anti-rheumatic drug (DMARD).
After two months of his treatment BJ had showed no improvement. On the right side of his arm he developed a light and dark pigmentation on his skin. The pediatric rheumatologist thought this could be vitiligo. On the right side of BJ's hair line he start to lose hair.
I remember clearly the day I was sitting in the hospital clinic, BJ was seeing the PT after his rheumatology appointment. The PT noticed BJ was starting to lose his foot prints, and the right foot was an centimeter shorter than his left foot. Because BJ was so stiff and his skin was becoming tight the PT and his pediatric rheumatologist decided to admit him to the rehabilitation unit at the hospital. I didn't want my son to see me get upset. I tried so hard to keep the tears back, but I just couldn't control it any longer. I burst out in tears. The worst thing in the world is for your child to see you cry. So my son started crying, too. I had to explain to him why I was crying. The pediatric rheumatology nurse gave us a tour of the rehabilitation unit. I was told BJ had to stay there for six weeks for PT and OT everyday.
August 1996, days before BJ was to be admitted, he had developed a brown, shiny spot on his stomach. I thought what is going on now. I called up his pediatric rheumatologist to explain this. He said since BJ would be coming to the hospital in a couple of days he would look at it. Those couple of days seemed to take forever. Once, BJ was admitted, his pediatric rheumatologist came in to see him. He looked at BJ's stomach. He didn't say much because he didn't want me to know what he thought BJ might have. He knew I was the type of mom who does research if I don't know something. He ordered new blood tests. So once again, I had to sit and wait to see what else was wrong with BJ.
A couple of days later the blood tests came back. The pediatric rheumatologist said to me BJ has Scleroderma (SD). I thought to myself SCLERO-WHAT!! They gave me one pamplet to read about this disease. It was mentioned to me there isn't much information about SD because it is a rare disease and especially in children. Everythig I read was a death sentence.
I had learned generally when you read about SD it is basically mentioned as a minor lesion to a debilitating and fatal disease. Scleroderma means hard skin and is pronounced skler-o-derma. There are two types of SD: (1) Localized - which affects the skin, subcutanious tissue and occasionally muscle and bone. (2) Systemic - which strikes the esophagus and internal organs as well as the skin and can be life threatening.
BJ was diagnosed with Linear SD a form of Localized SD. This is an area of thickened and tight skin that develops in a "line" down an arm or leg. As mentioned before BJ's right leg is shorter than his left leg because Linear SD can interfere with growth of the limb. The vitiligo was the Linear SD, and the loss of hair was also due to the SD. It had been mentioned when your hair falls out it does not grow back.
After all this time we thought BJ had JRA when he actually had Juvenile Scleroderma (JSD). It's not uncommon for SD to be misdiagnosed for RA or Lupus.
It broke my heart to know there isn't a cure or research being done on JSD. Since SD is basically treated with the same medications as arthritis or other rheumatic diseases, BJ's pediatric rheumatologist decided to keep him on the same DMARD, Methotrexate. This was in hope to slow down the progression.
August 1997, I decided I wasn't going to let the disease run us, we were going to run the disease. I was not going to let this destroy me or my son. I started educating myself more on JSD and about educational rights for children. BJ and I started educating the school teachers and child development students about JSD, and BJ's bad experiences in school.
August 1999, I realized after two years there wasn't enough support for us parents of a child with JSD. I found most SD organizations may use children to promote their organization, but they do not focus on JSD support or programs. There issues and help are for adults suffering with SD. I decided that I was going to turn my and BJ's negative experience with JSD into something positive for us and for other families. This is when I founded the Juvenile Scleroderma Network (JSDN). I run this organization out of my home. We provide educational and emotional support to children and their families and to enhance public awareness.
I have found the best therapy dealing with your own child's chronic illness is to participate in a support group of similar issues regarding children. And if there's not a support group in your area, don't be afraid to start a support group yourself! People working together can make a difference in their special cause!
Of course BJ at times gets really upset that he can't do what other kids his age can do. He finally realizes when people stare at him its only because they are curious. He doesn't have a problem talking about the JSD to other people.
When BJ grows up he wants to be a NASCAR driver and race against Jeff Gordon #24, and he wants to be a cartoonist. He tries not to let the JSD get in his way of drawing, since how he is right handed and the JSD is in the right hand too.
BJ is my inspiration, because I admire how he tries to live a life without limitations and frustrations dealing with a disease everyday. It takes a lot of courage to get up every morning to see what challenges will come his way. I think sometimes BJ handles having JSD better than I do.
I truly believe that God brought JSD into our lives for a reason. A reason to help other families of children with JSD. Until there is a cure for JSD, and beyond that cure I will always be here to help others learn from BJ.
Having a child with a chronic illness does not have to be a negative experience, turn it into a positive mission!
January 2000, BJ had hand surgery to help correct the contractures causing deformity in his right wrist and arm. The orthopaedic surgeon, lengthen his muscles and ligaments in his arm that had contracted around his bone. He had a small skin graft added to his wrist. At the time there was no guarantee how will the benefits be from the surgery.
As of today BJ is ten years old. His JSD continues to progress all through his right side of his body, lesions on his chest, stomach and some on his left side of his arm. He takes Methotrexate by injections once a week. He continues to see his pediatric rheumatologist once a month to monitor the progression, and he has blood test taken on every visit to make sure the medication isn't doing any harm to his body. He has just started seeing an OT two times a week. He has to see a psychotherapist for psychosocial stresses and coping relating to the JSD.
 March 2004: BJ still as of today continues to progress. For awhile last year his skin started to soften up. Now all the softeness has gone away. We have made a new change in BJ's schooling. In March I decided to start homeschooling him. This was the best decision I have ever made. Now we can focus just on his scleroderma without the constant stress from the school. The kids were getting really bad with the teasing. BJ stays more focused on his homeschooling work and now he is opening up to me about his scleroderma. He tells me what he wants to do to make his scleroderma better. I feel we still have a long ways to go, but I'm confident that we will make it through this together.
October 2005: It is often when we have a child with JSD they can experience some kind of depression. Some are mild depression, and some are so severe it could lead to
suicide. Never let any type of depression slip by you even if you are not sure
if your child is suffering from depression. Talk to you child's pediatric
rheumatologist, pediatrician, and if possible contact a child psychologist. If
your child needs medication for his/her depression don't forget to let your
child's pediatric rheumatologist know right away.
I cannot express enough how important this is because I'm living it with my son,
BJ. BJ has suffered depression for years. I've tried a couple of times to find
him a 'good' counselor. This is also important, if the child and counselor do
not connect the child won't open up and it will almost be impossible for the
child to get help from that counselor.
What I didn't know about BJ's behavior problems years ago til current was this
was part of his depression. I had always thought my child was a troubled child
and just acted out. Little did I know. The mood swings were horrible.
From July to November 2004 BJ was put on Solumedrol for his JSD. During that time, til current his mood swings became out of control. His anger was like a monster coming out of him. He hated me, he hated himself. He wished I was dead, and he wished he
was dead. He thought of ways to kill me, and he thought of ways to kill
himself.
Sunday, March 27, 2005 our lives have now completely changed for the worst! He
went into a full blown out of control rage out of nowhere. This rage landed him
in a mental health hospital the next day. He went voluntarily with me because
he wants the help to get better. BJ did very well in the hospital. He had to stay there for two weeks. While he was in the hospital his psychiatrist diagnosed him with bipolar disorder (BPD). So from what I thought was just a severe depression has now been diagnosed into BPD. BJ has made comments to me saying he fells like his body his falling apart because he has so many different things wrong with him. This is just another illness we will have to work through.
So, please if you think or if your child is suffering from any type of
depression get help now!
Shortly after BJ was released from the hospital we immediately found him a licensed clinical social worker and a psychiatrist. Giving BJ’s medication history of Solumedrol, and how his behavior/depression had been even being off the Solumedrol to his psychiatrist he knew right away BJ’s BPD was drug-induced by the Solumedrol.
We have also made changes in how he is being schooled. BJ wanted to go back to a public school, but I didn’t want him to go back to a public school. So, we met each other half way…he’s now in a charter School. He goes to school twice a week for a couple of hours each time. I thought homeschooling was great, having him in a charter school is better! His medical appointments and school time do not clash. We work around his school time so he doesn’t miss any school. He has a wonderful teacher!
At BJ’s last pediatric rheumatology appointment, August 2005, his pediatric rheumatologist agreed with me and BJ that his JSD had seemed to soften up once again, and some of his lesions are fading away. We hope this continues to stay positive! At this time he currently is on no medications for his JSD. We will take one pediatric rheumatology visit at a time to see what happens.
BJ is back in with OT/PT. His occupational therapist will probably make him a wrist splint. She is checking into silver ring splints for his two fingers on his right hand. His PT he is having a blast. They are doing pool therapy instead of land therapy. He sees his occupational therapist and physical therapist weekly for an hour. He still wears his orthotics and we are in the process of getting a shoe lift added onto his right shoe.
 Just recently, August 2005, BJ had the opportunity to make a wish with the Make-a-Wish Foundation. His wish was granted to go on a $2500.00 shopping spree! The foundation sent over a limo to pick us up, and take us to the mall of his choice. He chose Southbay Galleria because he knew for sure his favorite store, Hot Topic, was there. He got to go to lunch of his choice. So, while we were at the Galleria BJ wanted to eat at the Red Robin, another favorite of his. He shopped til he dropped. He came home with so much stuff from clothes to a computer. That boy knows how to shop!
 BJ has been very busy with joining a film club at the Boys and Girls Club of San Pedro, and learning to play the drums there as well. Now that he’s become a teenager he has changed his mind from becoming a NASCAR driver to a film director. I’m sure he will be a very successful film director, and I’m sure being a film director is a much safer career than a NASCAR driver.
We can only hope for the best, and see what 2006 brings to us. Stay positive!
2006
We were hoping for a positive
2006, but that just didn’t happen for us. I think 2006 was one
of the worst years for us.
 October
2005 BJ got the chance to ice skate with the Los Angeles Kings.
Now we are big hockey fans! That was a lot of fun watching him
out there on the ice. Although, his feet hurt in the hockey
skates and he couldn’t really skate the Kings players were
awesome with BJ holding on to him around the ice rink.
BJ was also in our local
magazine, San Pedro Magazine, and local newspaper, San Pedro
More in October 2005. Both talked to BJ about his shopping
spree experience with the Make A Wish Foundation, and about his
Juvenile Scleroderma. They asked me questions about the
Juvenile Scleroderma Network. It was a great article.
 From
the San Pedro Magazine in the article BJ had mentioned one of
his favorite bands being Avenged Sevenfold. Someone in San
Pedro knew one of the guitar player, Zacky Vengeance’s family.
They passed the magazine to the family. Zacky’s mom contacted
me to let me know the band was going to try and set up for BJ to
meet them and attend their concert in December 2005. BJ thought
he died and went to heaven! BJ had the best time of his life
that night meeting the band and being at their concert. Zacky’s
mom is a great lady! We did get to meet the whole family at the
concert.
 October
2005 BJ and his film teacher and two other guys filmed a short
film called The Last Hour. Of course it was a horror short film,
and BJ got to play the psycho killer with the weed whacker!
Their film was one of the many that were entered in the Los
Angeles City College Student Film Festival. BJ said it was
really cool watching their movie on the big screen!
In 2005 BJ had seen different
counselors and psychiatrists since the first time he was
admitted into the mental health hospital in March 2005. The last
psychiatrist who he seen before I had to admit my son a couple
of days before Christmas decided to make his own diagnosis and
took my son off all his medications for Bipolar. Not a good
choice.
From him not being on any
medications and now cutting himself I had to admit him back into
the hospital December 2005. Many kids cut themselves and their
parents have no clue that it is happening to their
child. Generally, kids cut themselves where no one would ever
know they were cutting. My son was cutting his arm up and
down. I’m thinking since his cuts were visible maybe that was a
cry for help. He didn’t get much help the week he spent in the
mental health hospital, but it did wake up the mental health
clinic BJ goes to.
BJ has tried many medications
for his Bipolar. Many of the medications haven’t worked. We are
still playing around with the medications. He’s been on and off
of Methotrexate for his Juvenile Scleroderma.
 I’ve
tried and tried to get the pediatric rheumatology clinic to send
in a prescription for ring splints. That never
happened. Prescriptions were never documented correctly for my
son to see a hand specialist at UCLA, instead of going through
the Medical Treatment Unit (MTU) that California Children
Services provide. To me that MTU is a waste of our time. They
take one look at my son’s arm, wrist and hand and don’t want to
do anything. It’s up to BJ and I to do something at home. He
needs intensive OT for his wrist and hand that I cannot give him
at home. So, now I’ve been waiting on a prescription for him to
see a hand surgeon for suggestions to help his wrist and
fingers.
BJ talked me into sending him
back to a regular, public high school in September 2006. Days
before school was to start I had to admit him back into the
mental health hospital. They let him out the day before school
started. He actually should have stayed in longer.
The first couple of months of
school we had such great support from everyone. After a couple
of months that fizzled out. I started to get phone calls about
him not going to school, and how he needs to go to school. How
I’m setting an example to him that it’s ok to miss school. I
got a truancy letter sent home. I wasn’t happy about that
one. His grades haven’t been bad. He’s managed to keep up with
his missing assignments. It seems the only way to keep up with
his missing assignments is if I email the teachers and/or his
Resource case manager. Which by the way I was informed that I
shouldn’t be emailing for his missing assignments. That it’s up
to BJ to ask for the missing assignments. After I was informed
about that I decided to contact the Special Education Director
at the School District. They’ve put me in touch with someone who
will make sure I get BJ’s missing assignments when he’s not at
school. We’ll see how that goes.
If I had it my way without a
fight with BJ I would send him back to a Charter school.
I’m interested in new
treatments, Photopheresis and/or Minocycline, for BJ’s Juvenile
Scleroderma, since he still progressing. He’s way passed the
‘burn out’ time of 3 to 5 years. We are going on at least 10
years.
The last time we saw his
pediatric rheumatologist in 2006 I brought a list of
medications. One of the treatments she was confused that I
wanted him to see a Dermatologist about Phototherapy. I wasn’t
interested, but did take BJ to see the Dermatologist about it.
I was interested in Photopheresis. The Dermatologist did
recommend the Phototherapy UVB. I decided to put that one off
till maybe this summer. He would have to miss two or three times
a week of school anywhere from six months to a year. The school
would love that one! I’ve decided to try the Minocycline. Now
I’ve just been waiting and waiting for a prescription for
Minocycline to be called in to the pharmacy.
After 10 years of pediatric
rheumatologists calling BJ’s Juvenile Scleroderma Linear/Morphea
I was puzzled by why the Dermatologist kept telling me BJ had
Generalized Scleroderma. I kept telling her he has Linear/Morphea.
She insisted it was Generalized. Through email I asked his
pediatric rheumatologist if he had Linear/Morphea or
Generalized. She replied back that he had Limited with a lot of
Morphea plaques, and suggested we should do PFT’s every few
years. Can you imagine what is going on in my head at that
time. I was angry! I emailed her back letting her know how
angry I was after 10 years thinking Linear/Morphea. She replied
and said she meant to say Linear. I’m not sure about that one
because she mentioned about PFT’s. Far as I know you don’t need
PFT’s with Linear. From there I decided to make an appointment
to go to New York in April 2007 for Dr. Lehman to take a look at
BJ.
BJ has had a lot of foot pain
and muscle cramps in his leg. Now we are waiting for a
prescription to see a podiatrist. Although California Children’s
Services say he should be seen by an orthopaedic doctor. We’ve
already seen an orthopaedic doctor earlier this year. That was
a waste of time, too. We didn’t see him for the pain in his
feet. BJ’s legs are two different lengths. His pediatric
rheumatologist, past physical therapist and a chiropractor has
noticed it, but the orthopaedic doctor doesn’t see the leg
length difference. We walked out of that clinic
disappointed. However, I did buy BJ orthotics from the grocery
store. He says his feet feel so much better now!
Well, that’s 2006 in a
nutshell. We’ve been through many trials and tribulations with
life in general this year. Hoping for a better 2007!
2007
October 2006, Robert did
finally start on 100 mg of Minocycline a day. He’s been on
Minocycline for over a year now. He’s been on many, many
different medications since he was first diagnosed in 1995.
Nothing has really helped him. This time it’s different. I’m
still kind of skeptical of Minocycline. I think it might be
because of all the “hype” about Antibiotic Protocol, and that
many pediatric rheumatologist seem to think it’s a “quack” drug
for scleroderma. Despite all of that, my son has made some
progress with his juvenile scleroderma. I was lucky that my son
has an open-minded pediatric rheumatologist that was willing to
prescribe Minocycline to him.
Shortly after my son started on
Minocycline, during one of his pediatric rheumatology
appointments he told his pediatric rheumatologist that he
finally felt like he was on a medication that was working for
him. He had always been so negative about all the other
medications he’s been on in the past. But not this time!
Since starting Minocycline,
I’ve notice some of the lesions are clearing up, his skin is
getting softer, he’s getting some range of motion back, and the
best part we now only have to buy one pair of shoes! Before he
started on Minocycline we had always had to buy two pairs of
shoes in different sizes. His right foot was almost two sizes
smaller. I believe during the summer we happened to notice his
right foot had grown. It hasn’t quite caught up to his left
foot, and it may not. The good thing is it has grown enough to
the point we only have to buy one pair of shoes.
We have been having problems at
the pediatric rheumatology clinic since this summer trying to
get his referrals. He still needs a referral to see the OT and
see a hand specialist. He did get in to see an OT one time, but
he ended up going into a residential treatment center. When he
came out the OT clinic said we had to get another referral. That
hasn’t happened. BJ wants to see a hand specialist because the
OT he seen mentioned, to fix his middle finger he would probably
need surgery. What might have happened to his middle finger is
his tendon slipped off his knuckle. I believe that’s what the OT
said.
February 2007, I took BJ out of
school. Hoping it would have worked out to put him in an
Independent Study Program. After they saw his IEP, they felt
their ISP was not the place for him. I think it was that they
didn’t want to be bothered with him because he had an IEP. He
actually did not go back to school until the fall, September
2007. He goes to a Continuation High School because he had
gotten behind in credits. He has made up his credits and keeps
getting more and more credits completed. He hardly ever misses
school. He’s made Student of the Month in his History class.
He’s been doing really good in school! He plans on taking EMT
classes at the Occupational Center after school.
Despite some set backs we’ve
had in 2007, I think it was a very productive year for my son!
For more information on Juvenile Scleroderma, contact:
Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731
Tel: (310)519-9511 (Pacific Time)
Speak to another JSD parent for emotional and logistical support
provided by home-based JSD volunteers. For medical advice, please
contact your child's physician.
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