Monday, December 27, 2010

More On Arthritis and Bruce

I do not have an obligation to tell someone of Bruce's illness.  But I do.  My feeling is that the more you stop talking about a situation, the more it becomes uncomfortable.  If it is talked about, the child and the family accepts it (because you have to) and it becomes a part of the family.  Bruce has a good attitude based on our openness of his illness.  At first I felt that I was wearing my feelings on my coat sleeve.  I told everyone.  It was therapy for me. Maybe by opening up it was helping to sink in.  Deep down I knew Bruce's illness wasn't going away.  Its not that I wasn't thinking positive, but God gave me a brain to use.  Don't think I didn't have a few choice words with the big guy.  I needed His help.  I needed to breathe but I couldn't.  Every time I came up for air, I would get pulled down. Bruce's illness consumed me and I had no choice but to be consumed.  We associate Arthritis with older adults, not a child.  I had never thought of it before Bruce got JA.  I knew it existed.  I just didn't pay a lot of attention to it.  To parents and people who do not have a child with a chronic illness its hard to understand. Its very hard on the parents who do have a child with JA or another chronic illness.  You have to first educate yourself and then your spouse, child and family and then the people you associate with.   The  responsibility is overwhelming.  When Bruce was going through the first couple of months and not getting any better, my duty was to protect and help.  But how.  Labs, testing, doctors, all showed that he had nothing.  He was called a fake.  Its not easy to hear that.  They were not at home with him every day and night.  They didn't see Bruce try to get out of bed in the mornings only to fall on the floor.  They didn't see him cry at night due to the pain.  He didn't understand what was happening to him.  He was depressed. I was so angry.  That anger was bottled up and put to good use.  I was going to find out what he had but I felt that I couldn't get any help.  Its not easy to take on this responsibility but you do.  You keep searching till you get some answers.  My husband was my sounding board.  He left me in charge.  He trusted me.  Bruce Sr. never bucked me once and he followed my lead.  That I am thankful for. On those days that I didn't have the strength, Bruce Sr. took over.

 During this time I educated friends on JA.   They would see me at the park or in the grocery store.  Sometimes Bruce would be walking, sometimes in a wheelchair and sometimes he would be sitting in the back of the cart at the store.  I don't think they knew how bad it got.  On the outside he looks well (unless in pain).  That didn't mean he didn't have a flare or joint contractures or exhaustion.  If you don't see a child sick its kind of like the old saying "out of Sight out of Mind".  

Since I home school my kids, I didn't have to go through the school process of trying to make teachers, principals, and guidance counselors understand.  I did have to explain to coaches that were a part of his life. He wasn't doing gymnastics anymore.  His tennis coach understood, she has Osteoarthritis.  Bruce stopped going do to the impact on his legs.  Bruce's coach would call me at least once a week to see how he was doing.  Golf was a sport that he continued to play.  We ended up changing golf coaches.  The one he had didn't understand.  Didn't understand because he couldn't see the illness.  He did see Bruce's frustration and thought he was a hot head.  What he didn't understand was Bruce's mind was telling him that he could do it but his body was saying something else.  During this time Bruce was on Methotrextate and it wasn't doing enough so his body was constantly in fight mode.  He was tired and weak but still wanted to play golf.  There were times that kids didn't understand either.  One boy on the golf course said "Hey, you let your mom carry your clubs".  We were lucky that he could pick up his driver.  I felt bad for him.  The one thing he loved to do and he was getting picked on.  He was silent.  I had a little meeting with some parents right after that at the golf course.  I explained.  They asked a lot of questions.  They apologized.  I don't want an apology I told them.  When your kid sees him sitting in the golf cart hes not lazy.  He cant stand for long periods.  Hes out there for about a half hour and hes pretty much wiped out for the rest of the day.  He cant pick his bag up.  Its too heavy.  The next time Bruce was out there on the course he had a new golf coach and the kids were very helpful and understanding.  I also told Bruce to speak up about his Arthritis.  Own It.  Its yours.  People are going to ask questions.  He said he wanted to tell kids.  Do not be ashamed when you sit out, take a break or even quit.  Know your limits and how far to push yourself.  Pace yourself.  Its a lot to ask of a 9 year old. But he pulled through.  I heard him tell kids that he has Arthritis.  Do you know that one time some kids did a different activity so Bruce could be a part of it?  It was incredible to watch.  I was so thankful that it turned out that way.  It made Bruce more confident and to be himself. 

Sunday, December 26, 2010


 I am writing this blog for my child Bruce so that we may educate and make aware an illness among children.  Juvenile Arthritis.  Bruce at the age of 8 was a very active boy.  Was in gymnastics and made team, played basketball, soccer and was very outgoing in water activities...swimming,boogie boarding and we were getting ready for him to begin surf lessons.  Golf and tennis at the age of nine was twice a week and he was excelling at them both.  Over the years we had noticed that he tired easily but still did well in spite of this.  We had attributed this to his small size and didn't think any more of it.  In November of 2009 Bruce was at tennis and asked me if he could stay out for the day his ankle was bothering him.  I said yes and to stay off it, he was kind of limping(barely) and it was fine when I took a look at it.  The next day he woke up and told me both ankles were bothering him.  Again I took a look and there was no swelling.  He said they were stiff and I thought maybe it was his shoes and planned on getting him some new shoes.  A couple of days later he had complained of both knees bothering him and in pain.  He started walking funny that day and he had a hard time getting out of bed that morning and the next morning.  Of course this was now Friday morning and his Pediatrician was out of the office.  That day pain was intermittent from one ankle to the the knees.  Applied moist heat and cold but by this time we knew it was not a sports injury.

Saturday Nov. 21st around 8 pm Bruce complained of pain (a 12 on a kids pain scale) and was not able to stretch out both legs.  Did not want me to move legs(knees).  We gave him Motrin to help with the pain.  He slept through the night.  Dad slept in his room.  Bruce was in so much pain that he kept saying, hurt, hurt, hurt until Motrin kicked in and he fell asleep.

Sunday Nov. 22 Bruce could not get up and could hardly walk on his legs.  Extremely stiff.   We decided to take him to the hospital only to have the Dr. to tell me it was growing pains and to continue to give him Motrin.  All labs were normal and so were the X-rays of legs.  We left there with Bruce walking out of the hospital like a little old man and the nurses all saying..."Oh hes so cute, we hope he feels better."

Monday Nov. 23rd Took Bruce to pediatricians office.  She did a complete physical on him.  Checked for strep.  I thought he was "arthritic" .  Dr. didn't think so because he didn't have any warmth or swelling in his knees and ankles.  She thought it might be tendonitis but did a complete blood panel on him.  He was walking a little bit better from that morning and he wanted to get out so I took him to get a hot dog and to walk around Target.  We got to the back of the store and he couldn't walk anymore.  We used a shopping cart to get him to the car.  He could not put any weight on his legs due to pain.  I had to carry Bruce into the house.  When we got home I gave him a warm bath and Motrin.

Tuesday Nov 24th Bruce woke up stiff and limping favoring right leg.  Motrin given.  By noon he was feeling better and asked to go to the movies and then to walk around.  I am thinking he is better and maybe it was tendonitis and its over.  Bruce was careful not to jump or use his knees in any way.  He said he was afraid that the pain would come back.  Bruce went to bed feeling good.

Wednesday Nov. 25th Bruce woke up limping favoring right leg.  Knee and ankle pain but no swelling.  Dr. called and the lab results were normal. Doctor told me to get him new shoes and to see a physical therapist?  Bruce could not bend or squat.  I am beside myself.  By looking at my child.  He looks like he has Arthritis.  Holiday and weekend.  I have to wait for Monday but didn't know what I was going to do.

Thursday Nov. 26th Bruce woke up stiff.  Went swimming in the heated pool in our community.  Bruce was feeling well until he sat down to watch a movie and got very stiff and in pain.  My son asked for a "pain pill".  He felt better but there was still pain.

Friday Nov. 27th Woke up stiff.  By 2 pm Bruce started feeling better.  I think he wanted to see what he could do so he started jumping rope.  Very bad idea.  Pain was bad.  We took Bruce to a Children's Hospital about an hour away only for them to ask if he was faking it.  All labs and X-rays were normal.

Saturday Nov. 28th Woke up stiff.  Other places hurt Bruce when stretching.  Bruce complained of pain in shoulders and elbows.  Bruce was very worried about going for a walk, playing.  He didn't want to do anything.  When Bruce would stop moving he would stiffen but when he walked he couldn't walk far.  He would be in pain.  Even with Aleve, Bruce said the pain never goes away.

 It was months down the road for an opening.  I had decided to video tape him and send in the video so someone could look at him.  I stopped going to his pediatrician because I was so mad that she didn't investigate further.  I had to wait to see a new doctor and a Pediatric Rheumatologist.  I was thankful that I had made the decision in the beginning of the school year to home school.  There was no way he would of made it through school everyday.

Over the next 2 days Bruce got progressively worse.  He now could not get out of bed on his own and had to be carried to use the bathroom.  He was getting what was called joint contractures.  His knees, elbows, and shoulders would stiffen up and they could not be moved.  We were actually picking him up to put him into bed with a pillow under his legs and his hands crossed at the chest.

I lay in bed one night and had a good talking with God.  I told him that if he was going to give me this lesson, he was going to have to help me find the right path so I can help my child.  I think he heard me and my husbands prayers.  The next morning I got a call to see a Pediatric Rheumatologist.  Actually 2.  One North of us and one South of us.  Dec. 9th was the big day.  Bruce Sr. and I didn't think it could come quick enough.  In order to get out of the house we got a wheelchair.  Now there is something wrong when parents are happy to get a wheel chair for there child.  Its just not right.  Our daughter Katie who was 11 at the time was such a good sport for the last month but she was starting to get cabin fever and needed out.  We all did.  This boosted our spirits.

Over the next month Bruce was put through a great deal of MRIs  and bone scans with and without contrast.  Gallium and Gadelinium contrast is very hard on the body of a young child but it was necessary to do in order to see the joints.  During this time he was also put on an NSAID that is stronger than Aleve or Motrin.  It helped for a week but then the pain would come and go and it just wasn't enough.  There is a certain protocol that Rheumatologists follow when it comes to Arthritis medication.  First it is NSAIDS, then if that doesn't work, Steroids go along with the NSAIDS.  When those don't work then it goes to Methotrexate, a chemotherapy drug, then to stronger medications such as Enbrel and Humira and then on to more powerful medications when those don't work.  Each time you switch out a drug for the next the doctors would like for you to be on it for at least 12 weeks. So there is no guessing if we took Bruce off too soon.  Some of these meds can take up to 12 weeks to work.  So it all takes time and its a waiting game.  NSAIDS alone didn't work for Bruce and prednisone didn't work at all.  I didn't have enough confidence in the doctor that we had.  She just wasn't aggressive enough and she had said that Bruce was probably sick prior to and that it was a virus attacking his joints.  We home school and I can say that for that whole school year, Bruce didn't have one cold, not even the sniffles.  

Bruce had a few labs that came back and were questionable.  The doctor wanted us to see a cancer specialist to rule out cancer.  There was no cancer.  Its a wonder that we made it through this time but you just do because you really don't have a choice.  You have to be strong for your child that is ill and for your other child too.  I know Katie was scared for her brother.

We are now approaching February 2010 and Bruce is still in what is called flairs.  Almost weekly he would have days of pain.  Weakness had set in and now he was having trouble getting off the floor.  We were meeting with a new Pediatric Rheumatology doctor down south.  The new doctor took one look at him and said he might have a muscle disease and to see a neurologist because he was weak in the hips and shoulders.  Three days later we saw a Pediatric Neurologist who also ran some lab tests and wanted to do a muscle biopsy on him.  It was a few days of waiting for the lab results to come back.  We were at home and one morning it was cold and rainy.  Bruce was watching TV on the floor and he called for me.  He couldn't get up.  He couldn't move!  I tried to pick him up but every where I touched he was in pain.  I called my husband at work and told him to come home.  I was scared.  Because all his labs came back normal, no doctor wanted to see him at this time.  They all were stumped.  Of course it was a Friday.   We hadn't seen the new pediatrician yet.  I was screaming into the phone that someone was going to see my son and that I was not going to take him to the ER.  I did that twice and they were no help.  Bruce Sr. got our son in the car and we took him to see the new doctor.  Within 5 minutes of looking him over he asked me where we wanted the muscle biopsy done.  We had the muscle biopsy done the following Thursday.  It took till the end of March to get all the results back.  They were all negative.  Great! No Muscular Dystrophy. Bruce is still in pain and still unable to get off the floor.  We had an appointment with another Rheumatologist on the west coast.

The 1st of April was a time I wont forget.  The new doctor looked at Bruce and new exactly what he had.  Poly Juvenile Arthritis with Enthesitis related Arthritis.  Poly meaning more than 4 joints and Enthesitis meaning pain in the tendons that surround the joint.  Bruce was a classic case.  He was a boy almost 9 and pain in his Achilles which is the tendon into the foot. The doctor put Bruce on a stronger NSAID that would benefit his type of Arthritis and Methotrexate(MTX) injections once a week.  Within a couple of weeks Bruce was feeling much better and the pain and weakness was leaving him.  He was always tired which meant that  the disease wasn't under control.  His body was always fighting. We just had to be careful because his immune system had been affected and it was easier for him to get sick.  When it comes to medication, it can be very scary.  Bruce's body was very weak and in pain.  We had no choice.  His quality of life was at stake.  MTX is a chemo drug and yes there are side effects but you really don't have a choice.  Don't think for one minute that we were not scared to give him this medication.  As a parent you have to make a decision.  I would of done anything at that time and the MTX was the answer.  The only answer.  His mental state was taking a toll.   Bruce was depressed.  He was in pain, constantly.  It had been way too long for him to go without the proper medication.

Bruce was doing well.  The pain was not as severe and the weakness was subsiding.  When school started up in August he was having difficulty concentrating and his back was starting to get tight.  At first he was starting to stretch his back all the time.  Then he was trying to crack it.  Then he could not get any relief.  He couldn't sit or stand.  His only relief was the pool.  He also couldn't retain anything.  The attention problem happens in some children when taking MTX. Also the MTX was not enough for him.  He is now taking Enbrel shots 2 times a week.  During the first 8 weeks he went back to not getting off the floor and in pain.  The doctor upped his medication and with in a few days he was doing great.  The only down side of the Enbrel is that it blocks all the cells in the body.  The good ones too.  His immune system is at risk.  

We hope that Enbrel is the drug for Bruce to stay on and hope that he goes into remission.  We cannot take him off the drug too soon or the Arthritis can come back stronger.  We have to be patient.  One day at a time.  We just changed injection sites from the arms to the belly.  The medication can burn.  On some children it does.  Bruce it doesn't, except lately and maybe that was because we used his arms a lot. Since we changed sites, it hasn't.  It is very difficult to give your child something that is going to hurt him. I'm giving it to him. I'm giving Bruce something painful.  Because of the PH it makes the Enbrel very acidic. Bruce has never complained about any shot. I guess he knows it will make him better.  The last few times they hurt and he was very scared.  Thank goodness that he can take it somewhere else.  It was just getting over the thought of giving it to him in the belly.  Both of us had a hard time with it.  But we did it!  I'm very proud of him not to mention that he makes my job easier.

Bruce has a new diagnosis.  It is now in his back and SI Joints.  Bruce has Juvenile Spondylitis.  He is one of the youngest to have this illness.  This doesn't normally show up in the back until late teens or even into 20s and 30s.  

There are 300,000 children with Juvenile Arthritis.  1,000 children have Juvenile Spondylitis  This disease does what it wants to.  There is nothing definitive about this illness. You can be positive in all labs that point to JA or you can be negative in all labs and it still points to JA.  It is a guessing game.  Anything goes.  What does the future hold for Bruce?  Only time will tell and we are thankful for finding a doctor who knew what Bruce had and has him on the right medicine.  Without this medicine it can further damage his joints and he would still have pain.  Hopefully we can be pain free and in the future be in remission.  That's all we can ask for.

It took Bruce 1 year to be on the right medication and to feel better.  I have updated all who will read this and will continue to do so to help any parent who has to go down this hard road.