Friday, January 7, 2011

So much better than expected!

Successful infusion with only one poke!  Thank God!

We were both so worried.  The mood was very somber as we made the two hour drive to the hospital.  It had only been two weeks since we last attempted her medication- and failed to find a good vein.  She was terrified.  I was worried as well.  They had told us last time that many of the children that they see who are on high doses of steroids are too swollen to find a vein.  They said that many times they need to have a port.  A port is generally put in as a more permanent solution through a medical procedure.  This way, when the patient goes in for blood work or infusions they don't have to get poked and prodded until a vein is found.  It presents its share of risks.  Infection, for one.  They don't always work.  Anyway, I was very worried that they wouldn't be able to find a vein again, and the talk would turn to ports.  The hospital had called the day before the appointment to confirm.  Since I was already worried myself and dreading the trip, I asked if a nurse named Jason would be there.  After the other nurses have all tried- and failed- to find a vein, the go look for him.  They assured me that he works Monday-Friday.  Thank God!  I told them how scared she was to go, and I suggested we have him try first.  I was hoping that they wouldn't be hurt or offended by this.  I really like and appreciate all of them.  However, it only takes one bad experience to cause trauma!

We got there quite early!  The waiting room was empty, but they warned me that the infusion room was on a wait.  That's ok.  We plan the whole day to be dedicated to her treatment when we go.  They had her vitals checked and they sent us into a regular room to wait.  I had just started to put down our stuff when we were called back!  They said that they would start her needle in the room that they never actually use because Jason was hanging out in there.  Thank GOD!!!  After some tears on her part and careful consideration on his part, a vein was found!  Unfortunately, he found it in a valve so they were only able to collect one vial of the 5 or 6 that they wanted, but it's more than they got last time.  With that, they can at least check her liver enzymes, and her white cell count to make sure that the Methotrexate injections aren't causing a toxic reaction.  It's weird when it's against a valve- it comes out all bubbly and foamy.  I was a little freaked out seeing that, though I should be used to it.  They tried again later to collect some blood, after the infusion but without poking her again!  It failed :(  They were happy that they got some of it.  Trying to get it later was a smart move.  It ended up blowing the vein.  If they had attempted before the infusion and it had blown, that would have meant another poke.  When she gets there, after the needle goes in, she's given Tylenol first by mouth, followed by Benadryl, because Remicade can cause headaches, fever, chills and other reactions.   Next comes Salu-Medrol.  In her case this is a main medicine for the Dermatomyositis.  This is also often given to Juvenile Arthritis patients to prevent flare-ups and decrease inflammation.  Last comes Remicade for the arthritis, but it's also third line for Dermatomyositis.  We're usually there from noon or one to around 5 P.M.

She wasn't on the schedule to see the doctor, which I was a little sad about.  Dr. M  popped by anyway just to say hello.  We chatted for a minute or two, and she went off to see if we were on the schedule.  I explained how thrilled I was to have Emily on the Procardia (high-blood pressure medicine) for the Raynaud's.  It has certainly helped!  I told her about Emily laughing more and feeling better.  She said that it may be because of the steroids truly kicking in, too.  That may be!  I forget to tell her that her physical therapist has had her jumping at the last 2 sessions!  Her last session was an hour to try to make up for not being there while we were in Gainesville.  She was tired at the end but she did it!  I did manage to remember to tell the nurse practitioner when she came by to say hello.  Heather is really cool!    I remembered to tell her that despite the Procardia, Emily just that morning had a Raynaud's flare, but it has definitely helped a LOT.  Also, this time her blood pressure was WAY down.  Last time it was 153/ something.  This time through several different readings it averaged around 113/85.  Sooooooo much better!!!  She also said that since it was prescribed now while her blood pressure is high, it will adjust with her so when she's off of the steroids it will still be ok to keep going despite normal blood pressure.  That was a relief.  I had wondered about that.  She had said that even though she didn't have an appointment, they didn't want to leave us hanging with no Prednisone decrease, & that while the steroid doses are high, the decreases are more frequent.  The lower the dosage goes, the less they decrease.  So, this week we can cut back from 8 mls last week to 7 mls for the next two weeks, then to 6 mls for the two weeks after that.  Each ml is 3 MGs.  So, by February she will have been brought from 42MGs at the beginning to 18MGs!   The way that this works is they start the steroid high and then lower it enough to wean off while adding in Methotrexate and increasing while the steroid is decreased.  She's obviously doing much better now.

There are other issues.  There always are, it seems.  One of the worst things about the Dermatomyositis is the extreme fatigue.  It causes so much muscle weakness and degeneration.  It takes a long time to build the muscles back up, and since it takes so long to get the disease into remission, the muscles have plenty of time to deteriorate.  Her rash is getting better and better but it isn't totally gone yet.  It's so close that I can almost see it being pretty soon in the future, but we're not there yet.  As well as she's doing, it certainly isn't comparable to healthy children.  She can walk, she will push herself to walk all day at school, but she's exhausted.  She can do a staircase, but it takes her a LONG time and she feels it for days after.  She can't walk more than a few minutes without fatigue, and so we bring her wheelchair just about everywhere we go.  If we go to the mall it comes with us.  We take it to the hospital because it's a long walk from the van to the doctor's office & infusion room.  She can't keep up easily.  After the infusion she's exhausted!  The Benadryl is partially to blame, the drive, & quite possibly the Remicade itself.  It will take a while for the disease to go into remission so that she can build the muscles back up, but eventually she will.  With the Mixed Connective Tissue Disease in the picture, she will likely have this happen again, but I have heard rumor that if it does it shouldn't be as bad again.  I have 2 books on order, so hopefully I will find out more very soon.  It's so rare that even Books A Million has no listing for "Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and Healthcare Provider".  One library in my STATE has a copy, and only 11 nationwide.  Wow.  The other book sounds equally as stimulating-  "A Parent's Guide to Rheumatic Disease in Children" by Thomas J.A. Lehman M.D.  He's the same doctor that wrote "When It's Not Just Growing Pains".  That was an excellent read!  

At the same time that Emily is finally starting to recover, many other children are currently getting worse.  Just our Florida bunch alone!  We have one child whose diagnosis was changed to Systemic disease this week.  That can be a terrifying, overwhelming prospect.  I'm not sure how old that little one is, but I believe she's only 4 or 5.  Also, there are 2 little ones that are suffering with severe abdominal problems.  They both had colonoscopies this week.  One shows many ulcers.  They are waiting on a CT scan tomorrow to find out more, but the thought is IBD or Chron's Disease.  The other family is forced to wait for a week.  We have another child that they are trying to rule out Lymphoma on.  But we all have to accept that since these diseases are autoimmune, often more autoimmune issues will pop up.  (Sigh)  Really, you just never know what to expect with these things.  Crazy stuff happens, but until you are "seasoned" with this, you just don't expect it.  Even when you expect it, it still never fails to amaze.  Like not being able to wear shoes without socks.  Or getting frostbite inside of school in Florida.  (The arctic I could understand...)  Many of these kids have Chron's, Colitis, severe allergies, fibromyalgia, etc.  

And then there are the medications...  You see, all of these medications come with side effects.  These kids are on some heavy meds.  Prednisone can cause cataracts, brittle bones, organ failure & eventual death if a close eye is not kept.  Remicade & Enbrel can cause Leukemia, and a whole host of other problems.  One of the children with the colonoscopy is almost blind.  No, he wasn't born this way.  His arthritis wasn't controlled well enough, his medicine dosage wasn't correct, and the steroids that he was on caused cataracts.  He's 5.  How is that fair?  Yet, he's a very sweet, funny, smart little guy.  It's so sad what these children go through.  They are all such sweet, thoughtful, wonderful children.  I truly believe that these kids are sweeter than most other children, more thoughtful because of all that they have to go through.  They are little wise people.  Little kids should be allowed to be just that.    We have to find a cure, we have to find a way.  Please, think on that.  So few take arthritis seriously.


  1. I am so glad to hear they were able to get the i.v. on the first try. Nicole used to have the same problem and we always asked for Nurse Jennifer at our infusion center. They never seemed to mind as they don't want our children to have to suffer any more than they already do. I'm also glad to hear that she is getting better. I really hope the Remicade helps. We are switching Nicole from Remicade to Orencia. I still am not taking any biologics. Just plaquenil, methotrexate, prednisone, and a few others. Well I will keep you all in my prayers. I am having a raynaud's flare as I'm typing. My fingers and toes are turning that all too familiar white color. I guess I'm just used to it. Take care and I will try to reply to your email tomorrow. Hugs, Jennifer Cassady

  2. I cannot tell you how happy I am that Emily continues to improve. Praise God for giving her doctors the talent, the wisdom, the compassion to treat her properly. Praise God for giving Emily YOU as her Mom. The last paragraph of this brought me to tears. What we are all doing with our blogs I believe WILL help. We are bringing awareness to the world and that will bring a cure. One will.

  3. I am so happy to hear that Em is doing well and continues to do so!! I am very happy you guys are now at Shands!

  4. I have been reading through your blog and you are one amazing Mom with one amazing daughter. Your daughter is a little warrior for sure, I will pray that she continues to improve everyday! Yes, your post made me cry as well, I hate that these children have to suffer so much, they are so special, thats for sure!!