Is it time to throw in the towel?

Trevor had his 6th Orencia infusion today.  Just as he was done with the 30 minutes he has to sit and wait with the needle in, he starts to feel dizzy.  Last month he felt dizzy when we got home from his infusion but really did not know if it was because of that or what.  Anyway, the nurses took his blood pressure again (it's always a little high, but normal for him) and took his oxygen level (it was fine).  They had us sit a little longer and after a while, he had to walk around.  He still felt dizzy but was okay to leave.  We felt that any medicine they gave him would just cause more dizziness.  

On the drive home it made me think, he has been on many, many medications from Aleve to Methotrexate to Remicade to Orencia.  So far, nothing has worked for him!  Nothing!  The most results we have seen have been for 2 months.  I know there can be long term damage from arthritis but if the medicine is not working what damage is the medicine doing?  I begin to question his diagnosis.  Have all these doctors gotten it wrong?  The poor kid has been through about every test out there.  I guess we will stay the course but by his next appointment if Orencia is not working, we are going to have to seriously get some answers to some of these questions.

Did you take your medicine?

I hate those words!! I say it at least 2 times a day.  When I was a kid I never took medicine or thought about being sick or anything.  This is our life....medications, pills, shots, infusions, creams, hot baths, heating blankets, flares, etc.  Ugh!

It's these little things that really get to people or parents of children with a chronic illness. (I think the big things are there but the little things are the ones we can nit pick at and let us really get under our skin)

A Fault In Our Stars

So I finally watched the movie "A Fault In Our Stars." It has been out for a while but I've avoided it mainly because of my mom. Currently she is struggling with terminal Multiple Myeloma Cancer.  She has been in and out of the hospital and really having a hard time.  She has been fighting for over six years now.  I just figured I would cry throughout the whole movie so I haven't bothered until now.  I had some time, it was on, so I watched it.  Boy was that a mistake....But not for the reasons I thought it would be! The struggle was so similar to what we go through with Trevor having juvenile arthritis. The amount of medications, the doctor appointments, the stress, and two things that really hit me hard.  First,  the girl was so concerned about her parents especially her mom being so consumed with her, her condition, etc that she didn't do anything else.  I so often find myself so wrapped up in Trevor and his condition and I see his face.  He even says to me "go, do that with dad or go there with your friends."  Secondly,  the pain rating scale! Anyone who has a child with a chronic illness knows it well and knows it is asked at every appointment, every hospital visit,  everywhere. "On a scale of 1 to10, 10 being the worst,  how would you rate your pain? "  The girl in the movie talks about never saying 10 and saving her "10".  I have noticed Trevor never says 10. He usually says 6 or 7. (It breaks my heart that his daily pain level is that high!) Anyway not long after I saw the movie Trevor and I were visiting my mother and she said her pain level was an 8.  He made a comment later that for her that was probably a 10 since she never complained.  He could tell how much pain she was really in.  Trevor then went on to say that he would never say 10.  In fact, he said he would also probably never say 9.  He has never seen this movie but it struck me as to how similar his response was to the girl in the movie.   The girl in the movie was "saving" her 10.  I just hope Trevor never has to use his!

Communication

One no TWO things I have learned in dealing with the many struggles of having a child with a chronic illness is to be organized and to communicate! (Well I have learned a lot more than that but these are basic things!) I tend to be the type of person that wants to deal with this all on my own, not talk much about what is really going on with Trevor (I save that for a few close friends).  Trevor has been really struggling lately with getting to school and flares. By the time he is able to get moving it is 1:00 pm. Chad and I finally met with the principal at his school and they have agreed to drop him from all of his classes except one study hall class. He will have to take all the 2nd semester classes by the beginning of the school year in order to stay on track for 10 th grade next year. No,  this is not what you hope for your child,  but in my mind he was going to have to repeat 9th grade. (After making straight A's the first semester) 

I can remember Trevor's kindergarten and second grade teachers telling me they could not wait to see what Trevor became when he grew up. I know none of them ever thought this would happen. I know God has great plans for Trevor and with this patience that I am so working on it will be revealed one day in the future.

Happy? 15th Birthday--No! Driving permit for you!!!

I had been told it could, probably would happen.  I guess I was being optimistic so to say I was shocked was an understatement. On February 13, 2015 we got a letter stating that Trevor had too many unexcused absences from school and therefore could not get his license. (Permit)  I immediately called the assistant principal who deals with attendance (the one we previously dealt with regarding his attendance and the  doctors note and getting all of his absences excused).  He rudely told me that they did not tell the DMV anything and that I needed to read the letter and do what it said.  I explained that Trevor's doctor's office had said with all the previous issues that this may happen and that a notarized form just needed to be completed by the school and sent to the DMV.  He said even with the standing doctor's note, all of Trevor's absences were not excused. He said I also needed to call the school for every absence. He had previously told my husband and I in a meeting we could only call for 10 absences. I explained this to him but he did not care.  The letter states to call the representative from the school for attendance  (which is him).  There are other options like waiting until your 18, attending 60 consecutive days (with infusions, this will not happen ) so I guess we have to request a hearing.  The catch is Trevor's school is a charter school so it does not fall under the school board.  We are unsure of who we request the hearing with, etc.  I am emailing the principal and this assistant principal along with the board.  I hope to find out our next steps.  Trevor was so excited to turn 15 on Sunday the 15th but now has to wait until this is resolved to get his permit! Why do these poor kids have to suffer in every aspect of their lives? I am working on a quick resolution!!

1st day of Orencia

Today Trevor started Orencia.  If it works, I love it!  It is a fast infusion.  We are told it takes a while to get into his system. (3-6 months) At this point, with nothing really working for any length of time, he can wait (if it works!)  The infusion itself takes about  30 minutes. He had to wait with the needle in for another 30 minutes but then he was done. We were at the doctor's office a total of 2 hours. Compared to Remicade, the length of the infusion is great.  He felt fine when we left.   No problems or side effects.  Next one in 2 weeks!

Three biologics failed- on to # 4

Trevor has been having a really hard time.  Extreme fatigue,  extreme pain in all his normal painful joint and tendon areas but also now his elbows. I've been talking to the doctor's office a lot.  They decided to have him come in.  So we went to All Children's on Friday, January 30th.  They decided the Humira is not working. They want to try Orencia.   It is a different biologic medication type that he has ever tried.  It targets a different area in his white blood cells. We are praying it works.   Obviously with failing three others,  I'm a little scared! I'm positive around Trevor and have to believe there is something that will work! Also because Trevor is so inflammed, they want him to be on steroids for 2 months. 

As for the Orencia,  they told us it could take up to 3 months to get into his system and they would know if it was working by month 6.

All other meds are staying the same until he gets going on the Orencia.

At my request, we are going to try to find a cognitive behavior therapist.  This will help him get distracted from the pain.   For now when meds aren't working,  we have to find other ways.

Also he will begin physical therapy again.
Awwwwww.....something has to work!!!

He should start Orencia in 2 weeks. I'll post more then!

Respiratory infection AGAIN

January 11, 2015--Our whole house is sick!  Trevor has an upper respiratory infection.   Dr. Eanett put him on amoxicillin.  So no Humira until Trevor finishes the antibiotics! Ugh!  We haven't gotten to see if the once a week is working.

Humira approved for once a week

Well the doctor does not feel like Humira is working well enough on Trevor so they have increased his dose to once a week.   Because it is uncommon,  insurance denied it.

Good news!  Right before Christmas our insurance approved Humira for once a week!  Now let's get to work Humira!