Thursday, September 30, 2010

Second infusion

I don't think that I'll ever get used to this roller coaster.  Emily just rolls along most of the time seeming pretty much unfazed, but I'm all over the place.  I try really hard to just expect things to happen, so I don't get as upset as I could, but try as I might I can't predict the way that I'd like to, and I don't always think of the right questions.

After the first full week on Orencia being an AMAZING change for her, by about day 9 the effects started wearing off.  Gradually, but bad enough.  At first it was in her back.  I had read that back pain was a side effect, and she accepted that.  She had 2 days of only back pain when her arm and leg started hurting.  Her leg was bad enough that she didn't want to walk.  Thank God it waited until the weekend to get bad.  By Monday she was ready for her infusion.  She didn't argue, fuss or cry this time, which was a relief.  This time she knew what to expect, and she knew that it worked.  She was pretty happy watching "Hotel For Dogs" while her medicine coursed through her.  She also distracted herself by making a bracelet in the hospital.  I had asked the nurses about more meds for her pain.  They called her rheumy, but of course, we didn't get a call back.  They are always so busy.  At that point I had figured that it could wait.  I suspected that by the next day she would be running around again, and she was!  I had really worried because I found out Monday that the elevator at her school had broken down again.  She's on the second floor, and there would be no way she could get up & downstairs if she was still hurting as badly as she did on Monday.  She had help getting up on Tuesday morning, but apparently sometime Tuesday afternoon the Orencia kicked in!  She came back home running!  She also very happily told me that she didn't need her gloves on Tuesday! 

My best guess is that until it fully kicks in she will have several days before the next dose that are just plain bad.  I panicked when I found out that this bag only held 250mg compared to the first dose of 500mg, but she's doing very well.  We are breathing sighs of relief for sure.  I have faith that this is the right medicine for her.  I feel that once it is working at max she will feel really good again, in a way that we haven't seen her since March or April.  I can't wait for that.  These children are so amazing, so special.  And so smart!  She told her teacher that her back hurt, but don't worry- it's only a side effect and it will go away.  It's the things that I don't think she's listening to that she'll repeat.  In any case, I'm just happy that we're in a good stretch, and hoping that the bad stretch will only be a day or two.  If this helps for the Raynaud's also, I will be thrilled.  That would mean that she wouldn't need calcium channel blockers or any other meds for that.  The less medication the better. 

She's getting very excited for the fall!  This is her favorite time of year!  It's been an interesting school year so far.  We've had a lot going on.  We've gotten more involved in Cub Scouts.  Last year I could take it kind of easy since it was only 2 boys for quite some time, and then just mine after the other one moved away.  We currently have 6 boys!  I've been busy the last 2 nights planning for the next couple of meetings, and getting things printed out to keep track of achievements.  Emily has been enjoying her Brownie nights.  Thank God for Michelle!!!  I have so much to use for Cub Scouts, but Brownie's had me pretty lost.  Michelle is a teacher and all of this has been pretty easy for her to figure out.  I went from going it alone to having her take over the part that I felt incompetent at.  Any which way, that has kept us busy.  I'm trying to be on the kids more with homework.  Ashley is actually trying to achieve Honor Roll status!!!!!  She wants to be an honor student.  Works for me!  We've gotten Emily to chill out a bit with her math anxiety and frustration, and I was actually able to teach her something.  We have to keep on Zachary.  He'll try hard to get out of doing his homework.

And in the middle of all of that, we lost two people in our division last week at work.  The first man I didn't know.  I believe I've met him once or twice, but that's about it.  Through no fault of his own, he was killed in a horrific accident with his store's work truck while on the clock.  So many people were affected by his passing, including several people from my store.  It was very shocking and very sad.  As if that wasn't bad enough, a driver from the store just a few minutes away from me passed two days later.  He had a stroke and then a blood clot in the brain.  That, too, was shocking and unexpected.  What a horribly sad week.  We all knew him, and loved him.  I can't say that I knew him well or that we were close, but he was a good man and he will be missed.   Our division is like a family in many ways.  When one hurts, the rest hurt for it and with it.  Just to rub salt in the wound, the A/C system at my store went out.  It's been like 90F in there all week.    It was a very trying, emotional, up & down week.  We have many things to look forward to this week!  Just having my little girl walking again is enough to make my week.  I hate the uncertainty of RA.  You just don't have any idea how any given day will be.  Every day is a gift, however!  I will try to have her looking for the positive things in a day like I try to do.  We all complain so much, myself included.  We have so much in this life.  We take so much for granted.  But truly, every day is a gift. 

Sunday, September 19, 2010

Week one of Orencia

Well, it's been one whole week of Orencia as of tomorrow afternoon.  My guess is that Emily is very sensitive to medications... in a good way!  Again, after speaking to the Orencia reps, other people with experience with it, and doing research online I was not expecting to see any results for quite some time.  At first I thought maybe it was just a coincidence until I remembered that she was off of her Enbrel a full eleven days before her first dose.  Every day she has felt a little better.  Yesterday she excitedly told us that her knees were popping.  Today they continue to pop.  That is a relief for her.  Also, she is showing me how she can do things now that she couldn't do even nine days ago before we started it.  She says that she can straighten her knees better now! I am so relieved!!!  She also said that there is no pain in her wrists, as she excitedly maneuvered them around in different positions.  That is huge because that has always been a big source of pain for her.  When she went to camp over the summer, the doctor that examined her there played with her wrist first in her exam, and right away told me that she was not under good control.  That was back in June, so all of this time she's been hurting.  What an amazing little girl we have!!!  I'm sure that most adults would have whined and complained the whole summer.  She just politely asks for baths. 

Also, although I can't find any link to it, her Raynaud's seems to have toned down a bit, too!  When we were at the Open House for our school on Tuesday (the first full day after Orencia!) her teacher said that they had noticed the difference.  She hasn't come home with an opened hand warmer in the last week, either.  She told me earlier that it's in her toes a little bit, but she hasn't needed mittens since being on it, either!  I hope that will come under control.  It is so sad that our little princess can't wear dresses, or even shorts in 95F degree weather.  It's sad that she can't swim unless the water is like bath water or she'll hurt all over and the blood stops flowing.  I've finally found a personal story on Raynaud's, and the man writing it said that when his hands go white it is worse than anything he ever experienced in all of his years in the military and in his years as a police officer.  My girl has these episodes several times a day.  She has never complained.  For anyone that is interested, I went to , clicked on the Cold Cuts newsletter, and read the featured story.  I love to read personal stories because it helps me to understand her better.

Also, please let me know if there is a great pair of gloves out there for children that are very warm, but could also be thin enough to hold a pencil like with regular mittens.  I am trying to prepare for winter for her.  I suspect that it's going to be like last winter- very cold for Florida.  Having lived down here since December of 1991 I know NOTHING about winter gloves!!!  I suspect that whatever we decide on, we'll have to order online.  Thank you in advance for any input that you may have!!!

Friday, September 17, 2010

Another mystery solved

 Have you ever just completely overlooked the obvious?  For a while now I've been trying to figure out what is causing Emily's "itchies".  She will tell me sometimes that she's unbearably itchy, and even the bath doesn't help.  So, I started researching.  Looking at other autoimmune disease, especially those in the rheumatic spectrum.  I went to Medical Prescribing Reference, a site for doctors that tells all about each meds.  I wanted to see what else Methotrexate was used for.  She begged our rheumy the last time that we were there to let her go back on her Methotrexate injections.  She's probably the only child in the world begging for a shot!  However, she knew that it helped as the itchies would come back when she stopped it.    Thanks to a friend posting a link to another friend, I get it now.  I have known for a while that Emily has scleroderma.  I have focused greatly on her arthritis, and often I have focused on the Raynaud's, like when her tongue started turning white.  However, I haven't worried too much about the scleroderma, except when it comes to her hands.  Even then, aside from the MTX there isn't much we can do about it.  Since she doesn't have the systemic forms, I pushed it aside.  And then I saw these videos.  I do believe I have much more to research now.  I have researched it in the past, but it was more before she was actually diagnosed.  We had a few months of uncertainty while we waited for lab results.  (They turned out negative, by the way.  It wasn't until a year later that he decided, labs be damned, her hands definitely have scleroderma.)  Scleroderma patients are much more likely to have Raynaud's than arthritis patients.  Raynaud's as a secondary disease is actually worse and has more side effects than when it's a primary disease.  Nothing about this child is easy when it comes to her medical health.

On the brighter side, her pediatrician (whom I love dearly) finally decided that I had a good idea every year when I ask for asthma preventatives before my kids get sick.  She & my son both get sooooooo sick this time of year.  Last year we were in there almost every week from September to March.  Maybe this year we'll be better off with the preventatives in play.  She put them both on Singulair, Xyzal (similar to Zyrtec) Qvar, (like Advair, an inhaled steriod) and nasal spray.  There's never a dull moment!  Since they've been back in school they've already had that throat thing that's going around and my son had a stomach virus.  They've only been in school since mid-August! 

Well, it's game night with the hubby & some friends  :)  If you have about ten minutes to learn, please follow the link at the bottom here.  Please have a box of tissues at the ready.    I needed them.

Thursday, September 16, 2010

So far, so good

I think it was in May when Em's rheumy had said "Maybe the Enbrel isn't doing all that it should be.  Let's max the dose and see what happens, but since that probably won't work, why don't you consider Orencia."  So, I did.  I talked to people.  I talked to Orencia reps at the JA Conference, I asked other people, I researched and read up.  That said, I fully expected this to take 3-4 months to kick in, at least.   I panicked a bit.  Knowing how bad her Raynaud's is in the summer, I was terrified to think of how it may be in the winter with a med that wasn't working well, or working yet.  Somehow, (she says with lots of prayers and fingers crossed) it seems that the Orencia is already working.  Emily came home yesterday RUNNING and telling me, "Mom!  Guess what?  The Orencia is actually working!"   I know that it could be a fluke, I know that it may not last;  I'm not getting my hopes up, BUT she didn't ask for a bath yesterday or today, and that's her biggest coping-mechanism right there.  On a bad day, if she could I think she'd spend all day in the bath.  It is huge to me that she's feeling this good!  Her endurance is still horrid, but we're working on that.  I'm just so relieved.  She was so angry at me for agreeing to an IV med.  She was so terrified.  I tried to explain to her that sometimes the right decision is the hardest to make, that I was certain this was the best choice that we could make right now.  It's wonderful when she sees that I'm right, that I am not making her be a pin cushion for no reason.  Kids this young should not have these issues!!!!!  Now I just need to find her a therapist.  As I've been saying a lot on here lately, she just shuts down.  When we started talking about Orencia in the doctor's office, on the tour of the Infusion Room, when we actually went for her infusion, and in math class a few times she's shut down.  I'm talking run away, hide in a corner, won't look at you, won't talk, won't listen, chewing on her fist type of shutting down.  I'm sure it's probably mostly arthritis-related anxiety.

I have to explain something before I get into how I feel about this.  I'm a Christian in the "it's God's job to judge, and my job to love" sort of way.  If you want to be Bhuddist, that's your choice.  I may not agree with your choice, but I don't think it makes you a bad person.  I may feel sad about that, but I'm not going to tell you.  I don't believe that shouting in your face will help, either.  I try to lead by example.  I'm not always the best example, but I try.  We're all messed up & broken.  I accept that, and I'm glad that I'm not the only one!  : )  Before Em's diagnosis we all made a lot of mistakes.  Looking back, I can't believe how depressed I was.  I can't believe that I got through it with only God as my counselor!  No therapy, no meds- just church and changing my outlook.  It took some time, of course.  But, I look back to 2007- 2008 when EVERYTHING was going wrong.  That's the time period where first Kevin got pnemonia, then the little people got it.  Kevin was out of work for 2 months.  I didn't even know Em was sick- she had a really shallow, dry cough but that was it.  I took Zach in to the pedi for his cough, but I had Em seen because they always got sick in pairs.  Well, the pnemonia congestion hung out in her sinus cavities leaving her a shallow cough for months. Then the nodules started popping up.  The limp started then, too, making her slower than anyone that I knew.  We had x-rays on her hands, & her hips to her feet.  All were clear.  Her liver enzymes her elevated for months, her white count all screwy, her kidney enzymes were messed up, too.  She failed a hearing test, and was also diagnosed with a mild form of autism called Pervasive Development Disorder.  She had her adenoids removed, and then she was diagnosed with JRA.  Since she had tested RF+ at her pedi's we knew pretty much that it was JRA months before she finally saw her rheumy.  Not to mention the color draining out of her hands & feet and then turning purple.  That was a highlight.  In the middle of all that we had found mold in the wall that connects the kitchen & bathroom so we yanked those out and remodeled both rooms- with only each other & Kevin's cousin Chris.  (Thank GOD for Chris!!!  We'd still be working on it.)

I look back at the stress, how I felt like I was losing it, how I yelled a lot and got sarchastic a lot.  (Ok, I'm still sarchastic.  But only because it's fun!)  Her journey has changed us all for the better.  Back then if someone told me that I would be doing all that I am now I would have laughed in their face.  I cannot believe the person that arthritis & God are making me!  Never did I think that I would be discussing legislation with my congressman in my free time.  Or helping people through what we went through, and are still going through.  It's really cool the ways in which we're used.  It makes me happy to be able to give people hope, there's good stuff down the road- just wait for it!  Yes, I still cry for my girl.  It is so wrong that our kids have to deal with these issues- most likely for life.  I cry for her on her bad days, and when she's her bravest.  We talk a lot about how bravery doesn't mean you're not scared.  But I love them harder.  I am blessed enough to be able to prove to my kids often that I will fight to the ends of the Earth for them, to teach them how to advocate for themselves.  We show them daily that we want to be part of their lives, and we treat them with respect.  They are, after all, people.  They deserve it.  Yeah, every once in a while I still have to raise my voice.  But most of the time it isn't necessary.  It plain sucks that she has to have something like JA, but when it comes with so many blessings, at least there's hope.  I know I have some weird issues... I hate leaving my house, except to go to work.  Even when I'm excited about going somewhere, when the time comes to leave... I often just can't do it.  I find myself rationalizing it, but there really isn't a rational reason.  Anyway, I'm rambling tonight.  I apologize.  I still have this darn cold/throat thing.  I shall return! 

Monday, September 13, 2010

The congressman & Orencia

What a day!  We met Congressman Bilirakis today.  He was actually very "real" and down-to-Earth.  That made me feel better about the meeting.  He and his aide were very sweet, very welcoming.  It was his idea to take pictures and he gave the little people coins that he had made.  They had his name stamped on them.  Pretty cool, really.  He had no idea that kids got arthritis, too.  I showed him a map that we had gotten from the JA Conference that shows the shortage of pediatric rheumatologists.  I told him about the CARRA research group and the registry that they are creating.  We discussed Emily's IV later in the day, and some of the medication options, as well as how few there are.  It was a good visit.  He said that he hasn't read the bill yet so he couldn't guarantee that it would pass or that he would support it, but he said that he's all about helping the children and he would read it today.  He also has a friend that knows a lot about it that he was planning on speaking to.  I know that he may still vote against it, but I feel that we may have an ally.  He encouraged us to come back.

We had Emily's infusion scheduled for 1 PM.  After visiting the congressman we dropped Zachary off at school, then went home for a quick lunch.  By just shy of noon we were back out the door.  We got to All Children's Hospital early and had a nice wait while they processed everything.  Em was fine in the waiting room.  The moment that she saw Leslie, the nurse that gave her the infusion bear, she freaked out.  I hate when she gets like this.  I can understand her fear but at times it's hard to deal with.  She refused to get on the scale... ran & hid.  It's a SCALE!  Not a big monster.  I know... it's a stall tactic.  I'm trying to get through to her that even when you're scared you have to consider how your actions impact others and yourself.   She wouldn't get weighed, wouldn't put the hospital band on, wouldn't let them get her temp or blood pressure.  I can understand completely freaking over the needle, but when she's making it so hard on such nice nurses it makes me  a bit upset.  They are AMAZING there.  They had Child Life come up to help calm her down and talk her through it.   That was truly a gift.  Kevin & I were both feeling stressed out, but they came with toys and compassion.  They gave her lots of different choices, though not too many at one time.  They talked, played, helped her through it.  The poor kid was just a wreck.  I know that after her first two or three doses she'll be like an old pro, but today was just dreadful.  She kept trying to jerk as they were trying to get the needle in her.  What pros they are!  The team there really made things so much easier. 

After the needle was in she calmed down.  They had given her blow pens, so she busied herself using the blow pens on the dolls that they gave her to color.  She also watched TV on their state-of-the-art TV's.  They have regular TV, a selection of movies on demand, and even internet access on the TV's.   They make sure that the kids have plenty to do.   Thank God because we have 2 more infusions this month, then after that we will be going once a month.

It was wonderful to get home!!!  I couldn't wait to get home.  I also had the opportunity to speak to a mom of a child that was newly diagnosed tonight.  It's always nice to do that.  It's great to compare notes, but it's better to know that you are not alone.  So few people truly understand what we're going through.  People seriously underestimate arthritis;  it just doesn't get the credit that it deserves, partially because it's invisible.  Sad as that may be, it is true.  People don't see that your child can't get out of bed in the mornings, or needs several baths a day because she's so stiff it's the only way that she can move.  People don't see that she feels so bad so much of the time that she can't tell when she's sick.  They can't see the days that she can't straighten out her leg, or get dressed by herself.  They aren't the ones whose hearts are breaking as they watch their brave little people that have never done anything to hurt anyone, and yet they hurt probably more than you ever have.  She told me the other day that she's already an old lady.  I had to laugh because of the way that she said it, but you cry a little inside because you know that it's true, and it's not fair.  And yet, it could be worse.  We count our blessings, take one day at a time, try not to panic at each crisis.  We focus on the positive, and find our strength through God.  What more can we do?

Sunday, September 12, 2010

Monday will be exciting!

Well, I really wanted to get on much earlier and write this, but somehow the time just blew by tonight.

Most of our family had a cold/throat thing going on this week.  The little people's asthma has been acting up, too.  Emily told me a few days ago that her chest felt heavy.  That scared me!  When she had pnemonia in 2007 I had no idea that she was sick.  I had her checked out because usually she & my son got sick in pairs.  Fortunately, she's doing ok.  This hasn't made her condition any worse, either.  I can see the effects of her medicine not working more & more now.  She had two baths tonight after I got home from work around 5.  Granted, she's now lost two doses of Enbrel in preparation for Orencia.

Monday morning we meet with Congressman Bilirakis!  I am very excited about this.  He has not been supportive of the Arthritis Prevention & Control Act.  Let's see if we can change that!  : )  I'm taking both of the little people with me.  This could be a wonderful educational experience!  So many people that had JRA as children have said that because of their parents advocating on their behalf they learned many lessons that other children don't get to.  There is so much that I can teach my kids about our political system through what we can do for the Arthritis Foundation.  I can also teach them how to advocate for themselves. Someone else has to help these kids.  People don't know that arthritis can kill children.    The systemic form can also have a complication called Macrophage Activation Syndrome.  MAS is excessive T-cell activation that causes overwhelming inflammation that can be fatal.  Arthritis does not only affect joints.   Why not?  Where it affects joints is in the lining, the synovial fluid in between.  Well, the heart has a lining.  Other organs have linings.  That is why the eyes can be affected.  (Uveitis)  I thank God daily & I feel so blessed that Emily is NOT systemic, but I also cry for the children that are.  So many people don't know these things;  they think that it's just a couple of painful joints.  There is so much more to it than that.  It's a rheumatic, auto-immune disease.  Not just a little wear & tear.  I really wish they would change the name to something else instead of Juvenile Arthritis.  Maybe then these kids would get more help.  I'm willing to do my part.

The other exciting part is that after meeting our congressman we will head to All Children's to start IV Infusions of Orencia.  I was terrified when I found out that it can take 3-6 months to kick in.  With the way that she turns purple in 95F weather I can't imagine how bad this coming winter would be with a med that had lost its effectiveness.  I managed to get a rush appointment at her rheumy's (thank you, Michelle!).  Her doc agreed that it is time to make a change.  Enbrel has been amazing.  Enbrel gave her a LIFE back when she was at her worst with this disease.  Changing meds is hard for her;  it's hard for me, too.  I don't like waiting for something to kick in, I don't like uncertainty.  She was completely terrified to start, but thanks to the awesome nurses in the Infusion Room at All Children's Hospital the fear is less.  The one that was with us through most of our visit (when Em broke down completely, tried to run, wouldn't talk to anyone, shut her eyes tightly, & tried to eat her fist) gave her an IV bear.  This thing was sooooooo cool!  It came with everything needed to "give the bear an infusion & after-care".  How cool is that???  That helped her to figure it out and make her peace with it.  It also helps that instead of having lab work drawn every six weeks, two shots of Enbrel a week, and Methotrexate every week when her white counts would let us, she will only have one dose a month after the first month.  They can draw her blood then, and give her one shot of the MTX.  Since she's off of the MTX more often than not because of her white count, her doc switched her dose to one shot every other week.  I hope that will do it.  She needs it, but we can't have her running around with no infection fighting ability all of the time.  It's a delicate balance.    Anyway, they plan to have a therapist there to talk to her for her first dose.  Many children have the same fears that she does.  They say we'll only be there for an hour, and it has almost no side effects.  I just want her to be able to move freely again.  For the last few months she's been so stiff.  She has a hard time getting up from the couch, and the baths are often.  The pain hasn't been remarkable to her enough to say something, but that means nothing.  She often doesn't complain.  I'm just happy to be able to do something proactive.  I hate just sitting back helplessly.   Wish us luck and keep us in your prayers!

Saturday, September 11, 2010

Please play golf for a good cause!

To the Florida golfers:  there's still time to register to enter Patrick's Putt Away the Pain tourney! It's in Odessa on September 17th. This tourney helps to send children with rheumatological illnesses (like lupus, scleroderma & juvenile arthritis) to camp. They need overnight camps with doctors on staff to administer their meds. Please help support a great cause & have fun doing it!  or

Thursday, September 2, 2010

What a crazy day!

Let me start by saying that I am completely exhausted- like, falling asleep in my chair tired.  However, I promised an update and I don't really see any time tomorrow for it, so forgive me if this doesn't fully make sense.

I took Zach to school this morning, leaving Emily at home.  I had figured since our drive is over an hour to get to her rheumy and school doesn't start until almost ten it didn't make sense to take Em to school.  She would be there an hour and miss lunch.  We're generally at the doctor's for HOURS.  Sometimes outside in the waiting room for 3-4 hours before we even get into a room.  So, that was the plan.  I had just gotten back home when Em's teacher called.  Apparently the district decided to send people to evaluate her writing, but had neglected to tell anyone.  Well, I'm all for anything that could help so we rushed back to the school and had a wonderful meeting.  Now, she is still whiny lately and she is shy with people she doesn't know.  She had a little meltdown, but it passed quickly enough.  I explained that she could either help the people that are there to help her or I'm leaving the room.  They brought a wide array of pencil grippers.  It was amazing, actually.  The lady, Patsy, asked questions and befriended Emily while helping her to pick grippers while the man, Mr. Roberts, was watching how she held each pencil.  By watching her hand position and gaining her feedback they decided on 2 different grippers for her to use in school.  They also evaluated her typing skills.  This allows them to decide on a program that is right for her to help her learn typing.  With this she can use assistive devices on the FCAT.  He also massaged her wrists and was amazed at the tension in her back.  Touching her back is (to me) like touching the back of a little elderly person.  All stiff and tense.  That meeting went so well!  He told me that he can see the scleroderma in her wrists and hands.  This  PT actually knew about her conditions.  He understood what they are, not just what they do.  I'm always happy to have a medical conversation with anyone that has a clue.  :)  At the end of the meeting we rushed out to head to All Children's.

We got to ACH at 12:30- just in time.  We signed in and ran to the cafeteria to grab her some lunch.  I'm glad we did that.  We didn't leave the hospital until  just past 4.  I had a bunch of questions to ask, but the biggest were answered right away.  Her doc was all for moving to Orencia.  He understood that she wanted her Methotrexate back.  (How many kids do you know that whine because they don't get their shot?)  He says:  "Well, this isn't a traditional idea, but she's not a traditional case.  Since we can't lower her dose, why don't we try every other week instead of weekly?"  Works for me!  She absolutely panicked when we agreed to try the Orencia.  We had discussed it in the past, but she didn't want to do it so she wouldn't listen.  She cried for a good hour.  I can't say I blame her.  I think that she thought she would be admitted to the hospital and have the IV in her wrist, which she really doesn't like.  We all tried to calm her down and have her explain what was so upsetting about it, but she just couldn't do it there.  We attempted to show her the Infusion Room but she kept her eyes closed the whole time.  Finally, one of the IV nurses offered us a bear.  I have pics to post but they didn't send to my Facebook and my phone is off & charging atm.  Anyway, this bear is sooooo cool!  He came with his own IV drip bag, "needle", splint board, bandaids, alcohol swabs, tape, gauze, tourniquettes, everything.  She ended up having a great time playing with the bear, which opened her up for some questions.  She's happier about it now.  We explained that we can put it where she usually has her blood draws.  Not to mention that we can have her draws go through the same port at the same time!  No longer will she have 2-3 shots a week plus labs every 6 weeks.  At home we'll give her one dose of MTX a month.  The other she'll get at the hospital while she's getting her labs drawn and getting her Orencia.  At first she'll have to go three times in a month but after that it's every 4 weeks.  The drip is a half hour, the total time there usually being about an hour.  For the first year & a half on Enbrel it was our miracle.  She was a changed girl who went from screaming and hiding from people, afraid of being touched to tackling her brother.  Why should we settle for a slow down?  Why should we settle for needing 2 or more baths a day because she can't loosen up?  I don't think that's fair.  It's slow-acting, it can take up to 6 months to fully work, but it has to be better than where she's at right now.  I wanted to catch it before a full-flare.  This way, they are right next door to our rheumy- on the same floor, even!  If she starts to have a hard time we'll request solumedrol to be added while we're there.  (It's an IV steroid often used to help control the inflammation in our JA kids).  I'm confident this is the right decision.  I have spoken with enough parents, doctors, and even Orencia reps to be confident.  We were planning on scheduling today but she was so upset there that we couldn't.  Hopefully tomorrow I can get an appointment made.  It will be a few days before we can get in so that they can argue with my insurance company.  (Yay.)

One last note-  he got help!  They gave him a nurse practitioner!  That should help immensely.  I forget her name, but she seems very, very nice.  I'm so thrilled for him!  He needed more help quite some time ago.  They have started to revamp the way they do things, but I know they have still been losing people.  Ok, time to crash.  Take care, ya'll!

Wednesday, September 1, 2010

Appointment tomorrow!

This morning I called the doctor voicing my concerns about the beginning of the flare.  Today was another rough day for Emily; she's having trouble running and keeping up, & she needed frequent breaks during her physical therapy tonight.  I know how incredibly busy her rheumatologist is.  I don't expect callbacks often because of this.  I was completely floored today when they called me back this afternoon to ask if we could come in tomorrow!  I am sure that her meds need to be changed.  I know that the Orencia that he wants to move her to takes about 3 months to kick in, but can be as long as 6 months.  I know that she is in for a VERY long winter if we don't get something going fast since she isn't on anything for her Raynaud's.  I feel like we're racing against the clock with these meds at the moment.  I have a ton of questions for once.  Mostly things like: has she had an anti-CPP test done so that we could possibly help out in the Emory study?  What is CARRA group doing in our area?  Could the Lupus Pernio that she has developed in the past maybe be because she has Lupus?   I wanted to talk to them again about pointing newly diagnosed families to the Facebook pages if they can't give my contact info.  So many things to cover!  I'll post ASAP tomorrow after her visit!  Wish us luck!