Link to Arthritis Foundation


Thursday, December 2, 2010

Unexpected Blessing

Last night I had an expected blessing, definitely an answer to prayer. As many parents with a child with a chronic condition know, you feel isolated by the disease. I've really been feeling this lately and just praying for God to send me someone who understands.

Last night, prayers were answered. At church, I met one of our new members and her daughter was diagnosed with Juvenile Arthritis as a child and is now grown with her own children, one of which has arthritis. We exchanged information so I can meet her daughter and Isabel can meet her granddaughter. They are also a soccer family and the granddaughter is Isabel's age, so we have something besides arthritis in common!

Isabel has developed headaches which we think might be related to medication so she is off the Piroxicam for now and will start something new on Monday. Prayers she'll have some relief.

So far, today is a good day. She turns 12 today and said she felt 12. That's good!

Have a blessed day!

- Posted from my iPhone

Sunday, November 21, 2010

As Dory the Fish says, "Just Keep Swimming"

Yesterday marked one full week of the new treatment plan- Prednisone and Methotrexate.  So far, we have seen limited to no improvement.  Today was one of the worst days with Isabel being so tired and miserable that we could not stay for worship service.  Isabel attended her confirmation class and the rest of us attended Sunday School classes, but after the end of that 1 1/2 hours, Isabel was just not up for anything else.  And it was obvious to all who saw her. 

As we were driving home, we encountered the first snow of the season- good sized flakes, but not much accumulation.  Phoebe, Tessa and Liam could barely contain their excitement and the minute we pulled into our driveway, they jumped out and ran around the yard trying to catch snow on their tongues and scrapping what little snow they could from some stumps in the front yard.  Isabel never said a word, she just went inside.  When I joined her, she was looking out the window longingly and when I asked her if she was ok, she burst into tears.  She wanted to be excited about the snow but was in so much pain, she couldn't enjoy it. 

In general, it has been a rough few days.  When we did her methotrexate shot last night, she said it hurt each time I tried to break the skin with the needle, she cried out in pain.  I probably should have just pushed a little harder, but I gave up and called in Tim to give the shot.  I just couldn't bear to cause her pain and was certain I was doing something wrong. 

This morning was worse.  We made the mistake of leisurely starting our morning, not waking up the kiddos right away.  Big mistake... we should have woke Isabel up early to take a warm bath as she was pretty stiff this morning.  It was pretty much a snowball from there- the pain and stiffness were ahead of us.  When we got home from church, I had Isabel take a warm bath and try some yoga.  She really just wanted to lay around and do nothing.  But the book says I need to encourage her to keep moving, loosen up the joints.  And of course, since Tim is not reading the book yet, he was inclined to let her sit on the couch while I was pushing her to do some yoga.  I'm finding that I don't know how to determine the balance between coddling her, helping her and being empathetic.

Right now, I know that I just have to keep swimming- learning about this disease and how to make daily life better for my child.

Sunday, November 14, 2010

A New Treatment Plan

Just shy of a month after Isabel's diagnosis, she began having pain in her joints that were severe enough to wake her from a sound sleep.  When she would wake, she'd be up for hours, falling asleep after she was finally too exhausted to do anything else.  We called the doctor and they moved up her appointment from November 23 to November 12.  Tim and I felt so helpless, missing the days when a kiss actually did make it feel better. 

With her appointment being moved up by almost 2 weeks, I had to accelerate my research and reading.  I wanted to be prepared for anything the doctor may suggest.  I didn't want to wait while I read up on the treatment and most of all, I didn't want to panic in front of Isabel.  In the last 1 1/2 weeks, I've felt like I was back in school studying for a midterm exam- reading about traditional treatments, types of arthritis, relief therapies, etc. 

It's hard to take it all in.  I find myself asking if it is somehow my fault.  I was so faithful about what foods I ate while pregnant, following the Brewer's Diet so faithfully (everything but the liver).  Did I not eat the right things when I was pregnant?  Did that craving for gummy peach rings somehow harm Isabel before she even left my womb?  Did I let my own aversion to fish keep her from eating a food that could have potentially prevented her from getting arthritis?  Each day seems to bring more questions than answers and I find that I don't have the luxury of feeling sorry for myself, I just have to focus on making things better for Isabel while also not making our other three children feel like they aren't equally important.

Her appointment at Children's Hospital started as her first appointment did.  She saw a fellow and then her regular doctor- 45-60 minutes worth of examinations and questions.  Which based on my research is probably 3-4 times longer than most appointments, so we are thankful to have such a thorough and watchful medical team.  At the end of the appointment, the doctor recommended that Isabel begin taking Methotrexate injections.  As well prepared as I thought I was, it was still like someone had dropped a bomb in the middle of the room and our life had just exploded.  Isabel accepted the news so matter of factly, I just followed her lead.  After another hour or so, we were briefed on how to do the injections, Isabel practiced drawing the meds into the needle using a syringe and what I guess was some kind of saline solution. Then, when the nurse told us that they have us practice giving the injection on one of them, I wanted to pass out on the spot.  Isabel didn't feel ready to go that far so I did it.  Tim has done injections before as part of first aid certifications.  When I did my first aid training, I had to learn about Epi pens and that was enough to make sick to my stomach.  But, somehow, I managed to give the nurse the shot and she said I did a pretty good job.  For Isabel's sake, I prayed she wasn't lying.

At the end of the appointment, we had the prescription for the methotrexate, one for prednisone (to provide some near term relief), one for folic acid, and one for lansoprazole.  Additionally, we added a daily calcium and vitamin D supplement.  All of this on top of the piroxicam she was already taking.  So many pills. 

Last night, we officially survived our first injection.  Liam and Tessa insisted on watching.  Tessa held Isabel's hand.  Liam kept watch.  At the end, Liam told Isabel that she did a good job and was brave, he then rushed out to tell Tim how brave Isabel was during her shot.  Tessa was empathetic and started to cry.

Isabel has not complained about anything other than the taste of her medications.  The prednisone has increased her appetite, probably a good thing since she has not had a strong desire to eat.  Though she may eat us out of house and home before it is over.  Her next visit to Children's is on November 23- physical and possibly occupational therapy, then a visit with her rhuematologist in 6 weeks.  Plus blood work in between and her first ophthalmologist appointment will be scheduled. 

And, in between all that, we wait and pray that something brings her relief from the pain.  Please keep us and other families struggling with chronic illness in a child in your prayers.


Saturday, October 30, 2010

Saturdays are for Soccer

For the last 5 years, Saturdays have been all about soccer for our family.  Isabel and Phoebe were the first to start and we fell in love with the sport.  Now, all four kids play and I coach the girls' team.  Isabel and Phoebe are both very strong players.  They work hard and give it their all.  Tessa and Liam are both clearly following in their footsteps (Tessa scored a very sweet goal this morning!).

Since the onset of symptoms for Isabel, she's had to work a little bit harder.  Not just physically, but mentally.  I can watch her mentally preparing for the game.  Not in the way most kids do, but something different.  She knows that at the end of the game, she will have pain- in her feet, in her hips, in her shoulders, and in her fingers.  At the start of the game, she is mentally preparing herself to play through that pain.  We all see it.  It's a change in her from previous years.  She is praying silent prayers for courage and strength.   But, once she is on the field, for that short hour, the prayers are answered and she manages to leave the arthritis behind. 

Our sports league is a Christian League so we pray before games and do devotions at practices.  Our team also does something we call "highs and lows."  The low is something that was a challenge for you during the week, the high is how God is helping to make it better.  Often, Isabel's low was the undiagnosed pain and waiting for a diagnosis.  Once we had one, her low at practice was that she had arthritis.  Most of the girls on our team have known Isabel for 4 years so they all took the news hard.  You could tell they were wondering how this would change Isabel and our team.  Isabel is usually the one to rally the team and offer leadership.  It's hard to imagine our team without her.  I reassured the team and Isabel that arthritis doesn't end a soccer career, it just changes it.  More stretches, taping her ankles for games, etc.  The team has been nothing but supportive. 

In fact, we have decided to play for a cure.  Each goal they scored means a $1 donation to the arthritis foundation.  One family donated an extra $20 to the cause.  We've done similar collections in past seasons for very charitable causes, but the girls are really getting behind this one because this time, it is personal.  They have a face for the cause, Isabel.  Our last game of the season is next week so we'll see how we do. 

I don't think arthritis will end Isabel's soccer playing, it will just change things.  And, with each amazing play or goal, I have a new admiration for her.  Today when she scored our 2nd goal of the game, I thought, "HA!  Take that arthritis.  You won't stop her."  And I meant it.

Monday, October 25, 2010

The Beginning

Our journey began in June 2010.  Our 11 year old daughter, Isabel had just completed 5th grade and was ready to begin a summer filled with horse camp, soccer camp, golf, swimming, camping, rock climbing and fun with friends.  Late in June, we picked her up from a friend's house.  Isabel and her sisters, Phoebe (9) and Tess (6), had a fun day helping with their friends new playhouse.  They were all worn out and we were picking them up on our way home.  Their friend lives just around the block- 60 second drive door to door.  In that short time, Isabel's face broke out in hives and puffed up like a puffer fish.   By the time we got home, we saw her feet were swollen and her feet and legs were covered in red blotchy hives.  She had a low grade fever.

We immediately called the nurse's hot line and they recommended Benadryl in consistent doses for 24-48 hours and to follow up with the doctor if it continued.  Off and on for the next four days, her feet and hands would swell and the hives would come and go.  If we stopped the Benadryl or were even late with a dose, the red blotches came back. 

While at a friend's birthday party, she became lethargic and complained of pain.  They were swimming at the Lake and Isabel just wanted to sit on the shore watching.  Her friend's mom is a nurse so she immediately called us and we came to pick her up.  On the way, I finally listened to that inner mom voice and called to make her an appointment with Children's Urgent Care. 

At this time, I was thinking allergic reaction and we just had to identify what she was reacting to and eliminate it from her diet/environment.  Looking back, I see how optimistic that was.  The doctor did an examination- asking the normal questions.  Then, I could tell that the doctor was a bit stumped.  When she told me she needed to contact a Rheumatologist, my heart sank.  I knew this meant we were not dealing with a simple allergic reaction.

The doctor thought Parvovirus was the cause of the symptoms.  They did not run any blood work and referred us back to our regular doctor and she was prescribed with an anti-inflammatory.  The following week, we saw one of her regular doctor's associates and he also felt Parvovirus was the most likely cause indicating that Juvenile Arthritis or Lyme disease were remote possibilities.  The doctor recommended with continue with the anti-inflammatory and follow up in 6 weeks, indicating that the symptoms would subside in that time if it was indeed Parvovirus. 

During that time, the symptoms would mostly come but sometimes go.  Off and on she was very lethargic.  We continued with her plans to attend both horse and soccer camp.  During soccer camp, I could tell she was holding back.  At the end of each day, she seemed to have less energy than normal.  She also injured her arm during that time- she managed to close her arm in the sliding door of our van.  They thought it was just a sprain and they wrapped her arm.  The healing process seemed to take longer than normal.  In light of her diagnosis, I can see why.

At the end of our 6 weeks with no change in symptoms, her regular doctor ordered some blood work and gave us a referral to a Juvenile Rheumatologist at Children's Hospital.  We were now into August.  The blood work didn't reveal anything but the doctor had told us that blood tests are rarely conclusive in diagnosis in children.  We turned in our paperwork for the referral and had an appointment for October 7. 

Soccer season had started and Isabel played her best.  Only someone who knows her well can tell that she is playing in pain.  Also during this time, she was diagnosed with Sever's disease (heel pain) so we tape her feet for games and practice and she wears little gel/lift inserts in her shoes.  She is still scoring lots of goals in soccer and having fun, but at the end of a game or practice, her joints are sore.

Her appointment at Children's finally came.  In the time we've been dealing with this, I realize that our 3 month journey to a diagnosis is nothing in comparison to wait for most families.  Isabel's appointment lasted about an hour and the doctor was just incredible.  She spoke to Isabel directly, getting full participation from her.  Our regular doctor is like that with all our kids but some doctors are not so I was so happy to see her specialist would be. 

After a very detailed examination, Isabel was diagnosed with Juvenile Arthritis.  She had her first set of x-rays on her feet, hands and wrists.  (Remember that wrist she closed the door on?  It still bothers her some)  We don't have a specific type yet, but that will come in future appointments.  Her next appointment is Nov. 23 where she will have blood work, her first appointment with a physical therapists and more x-rays.  We left with a packet full of information.

We joined the Arthritis Organization and signed Isabel up for their pen pal program.  I also ordered a copy of Raising a Child with Arthritis.  It arrived last week and I've just started reading it.  I'm sure as I learn more, I'll have more to share.

So, I don't know how often I'll post.  Might just depend on how many emotions I need to release.  You may even see an occasional post from other members of the family.  Feel free to leave comments and let me know what brought you here.  If you are a parent or you suffer from arthritis and you have a similar blog, please feel free to leave me a comment and I'll put a link on this page.

God's Blessings and Prayers!