An awesome letter from a blogger to her past self!

http://themighty.com/2014/11/a-letter-to-the-me-who-was-terrified-of-our-diagnosis/

Flu Mist is coming

I know this is one of the questions always brought up on the different message boards so I thought I would post about it. I've heard the rumors that Trevor's school is going to be giving the flu mist. I have heard it all...pull him out of school for a month,  for 72 hours, for 2 weeks, etc.  I was starting to "freak out" a little so I wanted to make sure what Trevor's doctor recommended!   What did she say to do?  She said TREVOR obviously COULD NOT get the MIST but he was OKAY TO GO TO SCHOOL WHILE THE FLU MIST WAS BEING GIVEN. Needless to say I was surprised but relieved! I have complete faith in his doctor and know now what to do if they decide to bring on the mist! 

The Catch 22

You know these biologic medications are wonderful when they work, they lower the immune system to make it stop attacking itself so people can feel better.  It all sounds so simple but the catch 22 is it lowers it too much that sometimes people get every cold, stomach virus, whatever is out there!! Ugh!  Needless to say Trevor is sick again! Sigh! Maybe a stomach bug maybe a cold, I don't know? But the typical, in addition to feeling sick all of his joints hurt!  What scares me is we have not even hit flu season or "sick" season yet!!  I hear all of the stories of other JA kids in high school, smart ones, having to drop out and eventually getting their GED's (if they are lucky) and I just wondered how could this happen?  Now, this really scares me?  Trevor has already missed, counting today, 3 days of school. --he just started school!  One was a doctors appointment but yesterday and today he was sick.  It takes him about a week to catch up from one day being out.  It just really scares me!  I can really see now how this happens to these children with chronic illnesses.  And of course I probably do everything wrong, I beg him, just get up and go.  "You need to just go through the pain." I don't really know how to deal with this, no one ever gave me the instruction manual on this.  I don't think anyone can ever imagine what a family goes through when a child suffers with a chronic illness.  It is heartbreaking.  To the world the family puts on the fake smile and says every thing is fine.  

Hopefully this only happens in the school age time and maybe just maybe when he gets older he will not get as sick as much.  As for now, maybe I could wrap him in cellophane to keep the germs away? 

--Not to mention in July he got a sinus infection and had to go on an antibiotic for 10 days and be off Humira for 2 weeks.  (I guess I forgot to blog about this!)--

Tips for appointments.....especially the first one

A parent for the UK posted this list of TIPS on Facebook from a UK Rheumtologist.  This list is awesome.  I have actually had discussions with our pediatrician about filming Trevor with the ipad to show how he "really" acts- trying to disprove amplified pain syndrome (i.e. Not depressed or bullied,etc).    Also our rheumatologist always laughs about the girls that come to their 2nd and 3rd appointments in skinny jeans.  Poor things have to put on gowns.  This list is great!   I wish I had it for our first appointment!

• Make a list, in chronological order, of your child’s symptoms to take to the appoint as this can be enormously helpful for the doctor.

• Take a photograph and/or a video of your child’s skin rash, joint swellings, difficulty while performing any activities like walking, running, going up or down the stairs, struggling with writing etc. on your smart phone or camera and bring this to the appointment.  

• Talk to your child about going to see the doctor and tell them the doctor will want to examine them and explain to them what this means.  This will help to prepare your child for the examination and also help the doctor.

• Bring any medicines or list of medications to the appointment your child has been taking. 

• Dress your child for the appointment in such a way the doctor can examine all the joints, taking care the clothes do not hinder the movement of the shoulder and the hips during examination.  Loose shorts and vest/T-shirts are ideal for all boys and girls of any age, either to bring or wear under their regular clothing.

• Let the doctor know if your child has sustained any injuries before the start of the examination.

• Tell the doctor of any other investigations that are planned for your child with another doctor/speciality although, the diagnosis for JIA (in the US you refer to it as JA) depends mostly on the history taking and examination.

• If you have a diary or can use the diary on your phone/iPad this helps for planning future appointments and investigations whilst you are with the doctor.

• Don’t be afraid or embarrassed to take notes during the appointment about what the doctor tells you and contact details of the relevant health professionals.

• Start a folder with all the relevant documents regarding your child filed in order.  This helps you to remember appointments and what happened when and who you saw and can also be a handy reference for doctor and the other members of the health care team looking after your child because it provides a good continuity of care between the various health professionals.

And our hope continues

Just a short post today!  Trevor seems to continue to improve with the Humira.  I have noticed if he "over does it" he will still hurt but it only seems to last a day not 3 or 4 like before.  This is amazing!  I must say when I take a step back and think.... 2 1/2 years ago I would have never imagined our family dealing with this life.  I would have never fathomed my son dealing with this amount of pain and really losing the child that he was and I would have Never thought that ME, the girl that used to pass out at the sight of the dot where the shot was given, could ever give someone, especially her own child a shot would be where we are today!  Life sure is full of surprises!!  I had almost given up hope.  I had almost thought there was really nothing that was going to help him.  I am gradually starting to see "my Trevor" come back.  He talks a lot more, he jokes more, I know he will forever be changed, I just just pray he gets to live a little of his childhood!  God is good.

We went scalloping and Trevor was the best by far.  But after two days, he was beat.  But it was a GREAT two days!!

And Humira begins

We began Humira on June 11, 2014.  Even though I had given the Enbrel shot before, it had been awhile and we had heard Humira burns!  Well it did burn and he cried. I cried and felt horrible.  He said the needle did not hurt, just the medicine going in his leg.  If it works, it will all be worth it though!  He had one day of relief after the shot.  :(

2nd shot-  I did better on administering it but it still burned.  The burning only lasts a little while and he knows what to expect now.  After this shot he seemed to have many more better days then worse days.  We are so hopeful now!!!

I gave him the 3rd shot tonight.  It seemed to go much better.  It still burned but he tolerated it much better.  He knows that it is making him feel better.  He even made the comment to me the other day that he would much rather get a shot then have to the pills.  Go figure...this is definitely not the same child I had 2 years ago.

I hope and pray that he will be able to play sports and get back to being active again with friends.  

March 21st appointment

Let me start by saying I hate, I mean HATE this disease!  Trevor has missed a lot of school, these new medications given in February (sulfasalazine 500 mg 2 x a day and nabumetone 750 mg 2 pills) just don't seem to be working either.  Trevor is not like most JA kids, he does not want to tell all his friends he has it or stand out in any way at school.  He wants to have regular friends and try to think able JA the least amount possible.  He said he feels it every minute of his life he really doesn't want to talk about it too.  He wants to try to do regular things to make him forget he has it even if it is just for a minute.  I get that but I on the other hand want to know everything.  I want to talk to everyone, learn everything I can about it.  He doesn't mind that I do but I do want to respect his boundaries.  Anyway, It makes it hard.  Maybe one day he will be more open about it.  It was just a couple months ago that they told him it didn't have it, he's probably still confused.  I know I would be if I was 14 years old and dealing with all of this. So we go into Dr. Santiago's office with a positive attitude.....Trevor pretty much hurts on his feet, back, hands, and neck.  He doesn't really complain of knee pain anymore.  That's a positive right?  Wrong! She examined him and wow, he had inflammation everywhere of course where he complains but also his knees and his wrists.  She was so discouraged.  Another concern was that Trevor about two times a month will get a sore throat and a stuffy nose.  His joints hurt really bad (8 or 9 pain level) and he sleeps a lot.  I always thought this was his flare.  We took him to our pediatrician and he thought allergies but nothing helped.  It is weird, he does not have any running nose just inflammation. It usually goes away in 3 or 4 days.  This just happened to be a day he had that so she referred him to an ENT.  We go on June 2nd.  She showed me up his nose how most of his airway is blocked off due to inflammation.  We just got rid of the neurologist for his headaches (they have gotten much better so Trevor took himself off that medication!) the neurologist agreed if they ever got bad again that the rheumatologist could just start him again on it.  

After the whole misdiagnosed scare, I really took an approach that maybe if I stopped researching Nd talking to other parents and people, this would all go away.  It hasn't!  One thing I have realized as I've slowly gotten back into the arthritis world is that there is a chance that Trevor will go into medical remission but with his type of arthritis he will have it for the rest of his life.  He does not know it yet but I think he is beginning to realize it too.  It breaks my heart!  But I do hope that he can have at least some pain free days.  

He does amaze me though, with all of the days he has missed, he managed to get straight A's this past 9 weeks and may get all A's this final 9 weeks too except in Spanish.  He is so good about making his work up and getting with his teachers.  

Today is the day his entire class is going to Universal Studios.  He obviously can't go because he cannot walk around the park.  And, he in no way would get a wheelchair with it being a school trip, so we knew it was not an option for him.  

On the positive note...he starts Humira!  We just have to wait for the approval.  I will give him the injection again just like the Enbrel-yikes! This is only every 2 weeks though.  Everyone says it burns so we will see.  The doctor, Trevor, and myself all have positive thoughts that this one is going to work!!  It has to!

MRI of low back done and normal

Trevor had an MRI of his pelvic area on February 10, 2014 @ all children's hospital.  It was normal.  There was no bone marrow pattern or inflammation. Strange? Yes but good! Will this ever end? Will he ever feel better?
Trevor began aqua therapy. It seems to help at the moment but not after really. We will see!
Trevor seems to be hurting more and more. We are hoping on his next appointment on March 21st that his doctor will put him on a biologic medication. Trevor knows now how the pain feels at its worst. He will also know what it will feel like to get some relief. Until then we will wait. It seems like all we do!

Bone Marrow test Complete....good news

The bone marrow test is complete and Praise The Lord, Trevor does not have leukemia however, we still do not know what the abnormal bone marrow pattern is. We have made the decision to leave Shands and switch to Dr. Santiago at All Children's Hospital in St. Petersburg.  She is willing to listen to our opinion and research and she understands Trevor is a different patient. She is willing to treat Trevor not just a child with juvenile arthritis. Our appointment with her is on January 23, 2014.  In the meantime Trevor is up and down with the way he feels.  Sometimes he still has times when he cannot stay awake a feels awful (we are figuring this is his flare) and all other times when he just hurts.  He says his pain is always a 5 or 6 and sometimes it will go to an 8 ( when he gets that really tired can't stay awake feeling) or when he does any physical activity for any length of time.

We will see what Dr. Santiago says on the 23rd about the Bone marrow pattern and its relation to arthritis and his next move.  One thing I have told Trevor is we will figure this out!!