Oh that foot!

One of Trevor's first complaints was his right foot. He had an MRI of it in 2013 that sparked a full spectrum of tests, thoughts of misdiagnosis, etc. It always hurts him! Different levels of pain, different locations but it always hurts! Well here we are again. After his basketball for a couple days it was unbearable. The doctor looked at it and thankfully said "let's think outside of the box." So an xray later he has to see an orthopedic doctor. Another MRI is scheduled but it appears there is an accessory bone. ? There is no mention of this on his first MRI.  When asked by the way, I was told the first MRI looked at his joints. Really? Scary, because one of the diagnosis they were looking at was osteomyelitis. (Infection in the bone). Now granted we have not seen the orthopedic doctor yet but we did see one in 2013 and he reviewed the MRI with us. Now there are other possibilities of bone growth but I'm not going to speculate until after we see the doctors. It is always something! Trevor is also scheduled to have an endoscopy\colonoscopy in April.  I just feel so bad for Trevor. He finally had some HOPE and now he's told don't play hard on that foot, no weight lifting, nothing until we know what is going on.
On a happy note, we got a hot tub that Trevor loves. When he's in it he has no pain! Unfortunately, he does have to get out and face life but for now it is a peaceful retreat for him to escape his JA and pain!

Way too long

No,  not since I posted! Finally Trevor went to the YMCA and played basketball with friends. It has been over a year. He was so nervous. About seeing his friends? Crazy, yes but it has been too long. They talk a lot but it was different. I don't know how it went but it is good. We've decided we are done letting arthritis win. We are done letting it take over his life. Done! His friends are on the basketball team,  they are all tall now, they drive. So many things have changed. But for the first time in a long time, I see hope in Trevor again!
He is still on the blood pressure medicine but we are not sure it has lowered it yet.  He also remains on Orencia and all the other arthritis meds. Yuck!

In school he is starting testing so that is always fun but he will be fine. The school went over the 504 plan with me to help with his accommodations. Two hours in front of a computer with no break is too much for a JIA kid. At least the writing test is computer based now.

We have also began juicing and smoothies. Chad and I feel Trevor could use more fruits and vegetables in his diet so.... So far juicing has been not so good.  I have heard to add pineapple juice to add a little sweetness but he doesn't like the taste. I knew it would take a while to find the right concoction. I think the smoothies might work better. The bananas will mask some of the vegetable taste. When I get some keeper recipes that he likes,  I'll post them. I kinda liked the beet one but I was a minority. 😕 

High Blood Pressure

It has been awhile since I have posted. We are still struggling everyday. Trevor has an appointment with a physiatrist in April and I am hoping for big things! In the meantime,  things are about the same. Trevor has been in a lot of pain and has swelling in his joints. Especially his back,  shoulders,  neck,  feet, and knees.
Trevor's pediatrician has been watching his blood pressure for about 6 months now. He finally decided to put him on meds. He is going on Lisinoprel 10 mg.  This is so sad to me. I just can't imagine a 16 year old on blood pressure medication!  The doctor feels it is because the amount of passing he is in. I hope that one day he will be able to go off of it but my fear is that he never will. Trevor is 5'9" 153 lbs.  His BMI is 22.  He is not overweight. They have checked his heart and it is fine. High blood pressure runs in our family but not at 16 years old! But we keep fighting,  keep learning,  and keep hope! Until next time...

Where are we now? Right back where we started from?

It has been awhile since I have posted.  I have been caring for my mom for quite a few years and recently it had gotten really bad.  Since has passed away so needless to say it has been a really difficult time.  Trevor continues on the Orencia.  We don't really know if it is working or not but Dr. Santiago wants to continue with it.  She has made a referral to a physicist. This will be for pain management.  However, due to the appointment process we are looking at April!!!
Trevor has also been having high blood pressure.  So, we have been following his pediatrician on a regular basis for that.  He gets really close to "the number" to getting the referral to a pediatric cardiologist but then seems to stay low for a couple weeks.  His normal BP is 144/88.   Yikes!  I think it's high!!!  We are looking for a bottom number to stay in the 90's for a length of time.  He had an ecocardiogram and it was normal.  Thank goodness!  We will continue to monitor that!!!  And finally the other "new" thing has been his skin.  I thought he was just a teenager having breakouts but his head has also been flaking.  So...the dermatologist has put him on 3 different medications for his face and head.  So far it has not worked.  Well, like in true Trevor fashion, it seems to work at first but then stops.  He also has been getting red bumps on his legs, back, arms, etc.  They took a culture and it had a bacteria.  They said nothing to be too concerned with but that he should maybe go on an antibiotic. (They actually asked me what I thought?-weird)  So he starts that today!  I have asked if it could be related to his arthritis.  They don't know. "Probably not, but???"  Really?  They say it's a chronic condition probably dermatitis.  It will have flares.  Why Trevor!!!   I don't know if I am buying that.  Anyway, I just want him to have more days pain free!  I am hoping big things from this new Dr. Hart in April.  I am sure we will get to the bottom of the skin issues.  It is all just so frustrating.  For now, we just keep our heads up and moving forward!!!

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!