Bone scans and MRIs

Dr. Sukesh ordered a bone scan to help support his amplified pain syndrome diagnosis. It can show the blood flow in the body or lack of it. Well it actually showed subtle inflammation in his hands and feet  without certainty.  I then asked for an MRI and he agreed. I have been asking for an MRI since the beginning. Every time I was told eventually. I wish I would have pushed harder on this issue. Even if it showed nothing it could be used for a baseline, right? My insurance is easy, it would pay for it with no authorization required! The MRI was completed and showed a diffused mottled pattern in his bone marrow throughout most of his foot. This is everywhere his foot hurts! Dr. Sukesh now wants him to see a hematologist/oncologist.  They want to be sure he has not been misdiagnosed. Really? 19 months and we are talking misdiagnosed? 

We go to All Children's Hospital and she advises that if it is anything it is leukemia however she does not think it is that because Trevor does not look like he has leukemia. She does present this whole theory that is a possibility but unlikely because of the timeframe. But she wants him to see an orthopedic physician and their rheumatologist and then she would probably do a bone marrow test. This would be the only way to know for sure.  Here is her possible theory that is very scary:

Some children present when first diagnosed with joint pain and stiffness.  They are diagnosed with juvenile arthritis and begin treatment with methotrexate. Well actually if the doctor does not look closely at the patient's blood tests they can actually have leukemia.  This is actually more common than it should be.  Some children will present with the joint pain just like the JiA kids but have low red blood cell counts.  Once they begin treatment with methotrexate (which is a chemo drug used to also treat leukemia) it actually can somewhat treat the cancer. It usually will not last that long.  Leukemia patients have a much higher dose and other symptoms begin to show after six months or so. 

After she presented this possibility of course I can't get it out of my mind. We will have to do the bone marrow test in order to give me peace of mind. Dr. Sukesh will not treat him with any medication until he has it done. All of the appointments are next week. 

And to top it off, Trevor just seems to not be doing well at all. He went on a field trip on Wednesday, November 20th- 22nd but we had to got pick him up the first night because he got overheated playing football and almost passed out.  He could not get over it. It happened at around 1:00pm and they called at 6:00pm saying he just couldn't get better. He was having fun too before that.

This Monday, December 2nd he went to school but kept falling asleep and had a lot of joint pain. Tuesday he stayed home and slept all day. No tv or games. He got up and ate lunch and dinner. Wednesday, I took him to the ER at All Children's Hospital. Still exhausted!!! He said he just hurt so bad. He said he was dizzy and was having a hard time concentrating. They did blood tests. His red blood counts were a little low but they were not concerned about it. Why not????? I'm beyond frustrated now but I am determined to find out why he has that pattern in his bone marrow!!!! I just want him to stop hurting. It breaks my heart to have him look at me and ask now what? I told him, I will get them to figure this out! Sometimes I think I could go through medical school myself before they do. I really thought going to the ER would speed up some of these tests but it did not. I just don't know what else to do. I hope we can make it to next week appointments!

Amplified Pain Syndrome?

Instead of getting answers anymore, I think every appointment is just bringing new questions. Our rheumatologist is on board with this central pain sensitization or another name for it amplified pain syndrome (that is the one he likes to use). I have now done some research on this condition and the various programs. If my child was not just diagnosed last year (yes, 2012), maybe I would be more open to the program however, I just do not see that Trevor really fits into the amplified pain syndrome patient.  Many of the symptoms of amplified pain syndrome are:

Body aches

Joint and muscle pain

Abnormal sensations of burning

Tingling

Numbness or pressure

Headache

Chronic abdominal pain

Light touch to the skin causes pain sensations

Dysautonomia 

Trevor has joint pain (he also has arthritis!) and headaches (which he has had since he was 9- inherited from me).

I just don't see it. 

Trevor plays basketball and is as active as he can be. Every chance gets he is outside or staying after school playing football or basketball. 

Nemours is not really sure either.  They said they do not see active arthritis but want to see how things go over the next 4-5 weeks and then determine if he has this syndrome. Meanwhile, Trevor continues with physical therapy 2-3 times a week and he is in counseling.

BTW- his physical therapist was very concerned when I asked him about amplified pain syndrome. he said he would not have but Trevor in that category.

The Counselor

It is times like this moment that I reflect back on our "old life."....football games or basketball games, etc. we were always on the go! Life has definitely slowed down for us and that is a good thing. Things were moving way to fast. We were missing out on each other, our family! But now instead of after school football practices or basketball practices, we have physical therapy and now counseling sessions.  This is not something Trevor wants to do! In fact we almost physically had to put him in the car. His counselor seems to know teenagers and knows the last thing they want to do is talk to a counselor. Mr. Conti is his name and we hope he will work for Trevor as someone to talk to. He hopes to stress to Trevor that their conversations are between just the two of them.  Trevor told me it will just make him think of it more and he just wants to forget he has arthritis.  I know that but the doctor wants him to try this and I agree. hopefully once he understands the concept and gets that he only will come once in a while, it will be good for him and he may actually look forward to the times he will come.  Today was not one of those days. It was a day of tears for both him and me. I hate this disease and all of the things that the outside world doesn't really see that goes along with it.  These daily struggles of just trying to make it through each day and all of these doctor appointments. I'm tired of them and they are doing nothing to me I can only imagine that he is.  I still have that hope of that old life.....maybe one day, we will see it again.

FYI-they came out and he is ready to schedule the next meeting for next week! He's in a great mood! He loves the fact that he does not have to tell me anything and the Tony does not have to tell me anything....and that makes me happy!

Great information about medical records and keeping track of all those medications

Everything gets overwhelming.....even the most organized person becomes unorganized.  But this article is important. It is extremely important to keep track of records and medications.  Every doctor, clinic, camp, ER, etc wants to know what medications your child takes, the dosage, etc.

http://www.kidsgetarthritistoo.org/living-with-ja/medical-care/treatment/ja-medical-records.php

Highlights from the article:  Scan the medical records to keep in a file on the computer.

* I keep a large index card in my purse with an updated list of Trevor' medications.  On it I include the date he began the medication and dose.*

This is also a great website dedicated to juvenile arthritis.

Duke-July 2013

We traveled 10 hours for this much anticipated appointment with Dr. Laura Schanberg at Duke University. It was a 4 hour appointment. She examined Trevor along with a resident physician.  We hit a point during the exam that she pressed on Trevor and asked if it hurt in all of these certain spots and Trevor said yes, yes, yes. I was shocked. We'll then she came to the conclusion that she did not Think he had active arthritis and that he had central pain sensitization.  This condition is caused by your brain processing your pain in a different way.  She told me we were so fortunate because she was the best and an expert in this field of study. She asked if Trevor would treat there. She told me she would make recommendations for him to his rheumatologist when I said no.  She did want to run some labs and other tests first but was pretty sure he had arthritis and this other condition and the central pain sensitization was want was causing his pain at this time. 

She handed us a sheet if paper when we walked out and on it I noticed it only stated back pain, nothing of the feet or knee pain Trevor mentioned as his first major complaints.

I was discouraged, sad, we travelled so far and now we have added just another diagnoses to our child?

Inspiration for this beautiful morning

This was the daily bible verse for Trevor's appointment day at Duke University.
Luke 12:6-7 () 6 Are not five sparrows sold for two pennies? And not one of them is forgotten before God. 7 Why, even the hairs of your head are all numbered. Fear not; you are of more value than many sparrows.

The Arthritis Foundation is doing some amazing things

I've donated money to many charities throughout my life and of course have embraced the Arthritis Foundation.  I must say I am very impressed with how far they have come in the two years we have been involved.  Many new medications have been introduced, much research is going on, and much much more.  Closer to my heart is a much needed website dedicated to just Juvenile Arthritis.  This is fabulous.  When parents want information, they can go to this website for answers.  It just for JA.  They don't have to weed through RA or osteoarthritis or all that other stuff. It is wonderful!

Here is the link:

      www.kidsgetarthritistoo.org

It's been a While- Quick Catch Up

I really don't have an excuse for not keeping up with this blog other than wanting to crawl into a hole to escape this life. Not that our JA life has not carried on and not that we have not continued to fight. I was determined to make this summer the summer of fighting, the summer of getting some answers, and the summer of resolve. So far, it has been none of that. It has been the summer of backsliding and starting over. This has been our first "real" JA summer. It has been pretty easy on Trevor. I don't know if it the lack of early rising, the getting up at his own pace or what but, it was much easier than those last few weeks of school! ( I did not think we were going to make it!). Here is a quick update:

   After Trevor's appointment, his stomach issues got worse.  We did not begin the Leflunomide 20 mg medicine. (New medication).  The nurse told us that would only make his stomach issues worse.  We went back to his GI doctor expecting to get another colonoscopy and endoscopy done but instead we were told that Trevor needed more fiber in his diet.  As a mother there are some things you know.  Trevor may not be the best eater but he is pretty picky and tends to eat the same things. He had not really changed anything, I knew something was going on. I don't know if it is medication or what but something.  The doctor shocked me to explain that his last colonoscopy had three biopsies done. One of the biopsies showed inflammation but he thought it was inflammation due to the arthritis not due to inflammatory bowel disease. What? How do you know this? And he added if he has inflammatory bowel disease he is on the best medication for it (Remicade) and at a very high dose to boot so he would not be having any problems. I don't understand? What if the medication is not working? No answers. I got nothing! I was told to give him 20 mg of fiber a day and come back in 3 months. Well as you can imagine lunatic Julie came out. I think I am now flagged as a crazy woman in both Trevor's pediatrician's office and rheumatologist's office. Each of them kept telling me to go to the other office.  Finally we just went to Shands. 

    On June 17th we saw Dr. Sukesh.  We realized he did not even have any of these records! He was very disappointed that Trevor did not have the tests done.  He agreed that we needed to get a new GI doctor. He made a referral to Shands and Nemours (soonest one) and see what happens. Shands appointment is August 12th.

    Needless to say we still do not have any answers.  Trevor is not having nearly the problems he did with his stomach that he was in May.  We never changed his diet. (I did tell Dr. Sukesh that). It seems to come and go.  We just have to wait and see.  Dr. Sukesh did want us to start the Leflunomide 20mg  which we did because he was on nothing and miserable. He said he was showing signs of scoliosis from adjusting his back due to the amount of pain he is in.  It will take 8 to 12 weeks to get into his system and if he does show inflammatory bowel disease (IBD) than this medicine will not work at all.

    We do leave on Saturday for a second opinion at Duke University.  We just feel we need to be sure Trevor is on the right path.  We love his doctors but just want another's opinion.

Things I have learned:

***If you see a specialist at a different facility other than your rheumatologist, they will only send medical records to your primary care physician NOT the referring doctor.  As crazy as that seems, it is true!***

(So Trevor's pediatrician has boxes of records on Trevor without really knowing what or why and his rheumatologist who made these referrals have none of them).

    

I'm useless

I'm useless is what Trevor told me he was the other night. This was heartbreaking to hear. I tried so hard to tell him everything positive about him. I told him he was smart and motivated and told him that was a great combination. I tried to tell him that not many people turn out to become professional athletes or even play in college. I didn't know what to say.

Stupid rain

Other than illness, the weather really makes Trevor feel bad. He is really having a hard time anyway this week. Yesterday he just could not get out of bed.  He could not go to school. I had to walk him to the bathroom to bathe. It was awful. He did not start feeling better until about 2:00 p.m. Even last night he was telling me he just hurt and ached everywhere.  In his arms near his shoulders,  his legs near his thighs. This aren't joints (tendons,  maybe, but?) 
Every morning I dread waking up.  I never know what condition he is going to be in.  Recently it is not good.  This morning was the same.... but today It is raining. I knew it would be bad.   He tried "for me" to move and bathe but he can't even walk to the bathroom without help our holding onto everything in it's path.
I called for a 2 nd opinion but the first available is in September.  So I'll now have to check the school calendar before I schedule that.  Really?  I feel for the families just being diagnosed.  I would almost feel bad taking an appointment away from them being that far away. 
We see Dr. Sukesh on Monday.  We are ready for a new plan!

May 2013 appointment...when it's time to change

Trevor went to his appointment on Monday,  May 6th.  Dr. Sukesh decided to change most of his medications since he is not having any improvement. He has stopped the methotrexate and remicade. He will begin Leflunomide 20 mg. every day.
We go back to the doctor in July 8th and will discuss adding a new biologic.
Fast forward one week later.  Trevor had a rough couple days after his infusion but started feeling better on Wednesday.  He felt better than he has in a while for 4 days.  Monday I was thinking about calling the doctor to reconsider his decision.  But then Sunday came.  His foot was so swollen,  it probably stuck out 2 inches higher than usual.
His stomach has been really bothering him for about a month now.  He sees the gastroenterologist on May 22nd. I hope it is the meds and not anything else more serious. I hate this disease!

A week I would like to forget

This was a bad week. Trevor was late one day of school and missed one day of school. The day he missed, the night before he actually played outside. He got up, took a bath and tried to get ready. He just could not do it. I lost it. I told him he could just not play outside anymore. That he needed to stay inside after school and take it easy. He needed to go to school and concentrate on the important things, blah, blah, blah....he said he would try to come to school (he would have his dad bring him.) He even texted me how sorry he was that he fell asleep in the bath tub and that he felt so bad this morning. A little while later Chad called me at work and told me that he just could not make it to school. He said that even though he played it was the first time he had seen him smile in a long time. Boom! Yes, there it was. Reality! How did I lose sight of it? How did I forget that he is a 13 year old boy that wants to play outside with his friends? I just wish this would all end for him. I wish it would all stop. I wish this horrible disease would go away and he would get his life back! It really seems like he is having a harder time in the morning. Chad has been taking him to school so he has more time to get up and ready (2 hours 15 minutes). He used to be up and ready in 20 minutes and even the beginning of the year it was 30! I don't know how next school year is going to work. He will have to be ready to go at least 1 to 1 1/2 hours earlier. I just don't know if he physically is going to be able to do it. As it is now, he goes to bed at 8 or 8:30 and gets up at 6:00 a.m. He would have to get up at 4:30 or even earlier? I guess we will see how the summer goes.

New Research About Methotrexate...maybe I'm Doing Something Right....At Least today anyway

National Institute of Arthritis and Musculoskeletal and Skin Diseases

One more sinus infection

I'm beginning to feel like a complainer. I remember the days when I had it made. We had no real problems, no real worries, no real concerns. And now I just hold my breath waiting for what's next. I hate complaining and really sharing any sort of "my story" because I feel like I am complaining but I am doing it to hopefully one day help another family dealing with this same situation. (I am a pretty private person but people need to understand how horrible this disease is!)
Trevor is learning his body. He told me this morning he was feeling like he did a few months ago. He did say everything was green in his nose. Yuck! So he saw his pediatrician today and was put on amoxicillin for 10 days. He said it was just the start of the infection but didn't want it to get out of hand. Why is he sick again?
Chad (My husband, Trevor's dad) took him to the doctor. They asked for the updated medication list. (I usually give them one whenever we go). He had no clue. But Trevor was able to tell them EVERY medication he was taking. He also told him he was put on the new medication for his headaches. He did not remember the name of it but he did just star that one.
I am proud that he is able to take some control of his care. I always have him talk to the doctors about his pain and problems and try not to intervene but this made me proud.
Anyway, I hope this is the last illness for a while, aren't we out of this sick season anyway?

State testing (FCAT) and the many problems it brings for JA children

Well like most parents this time of year, state testing becomes a big concern. Although most parents are concerned with how well their child will perform on the test, I know other JA families like me, are concerned about their child just making it through the test.
Yes, Trevor does have a 504 and can go into another room to take the exam but he wants to take the test with his class, his teacher! So, he will. He will sit for 70 minutes straight! He can stretch his fingers and legs but technically cannot stand up. We have been having problems with his hands locking recently so I am really concerned that this will happen during the test. Yes, they will simply put him in another room and allow him to finish the test but as his teacher said very directly in a meeting, "Trevor will not do well on the test if he is away from his class and in another room." Great teacher, she knows him very well. So true.
So as we say good luck to all the students taking their state exams (FCAT in Florida) I do say a special pray for those JA kids and hope not only do they perform well on the test that they "make it through it." That they can put their pains and discomforts aside a that time period and really concentrate on the state and do their best. And don't even get me started about being at school on those days....I'll save that for another post!

April infusion and headache update

Monday we traveled to Shands for Trevor's infusion. It was pretty normal. No doctor visit, just infusion. He seemed to tolerate everything well.
For about 2 months he has not been sleeping well. I don't know if it has been pain or what (he does not talk too much about things).
Tuesday we went to All Children's (Dr. Chadahumbe) neurologist, for a follow up on Trevor's MRI of his brain and plan for his headaches. The MRI looked great no lesions or structural problems just my bad genes. She started him on amitriptyline 25 mg. (for now he just takes half a pill) He will increase to a whole pill if the half pill does not work after one week. If the whole pill does not work he can increase to one and a half pills but she does not want him to take more than that. It makes him very tired. He does take it at night. We will see. He is to follow up after 2 months.

Trevor's recent appointment

We went to Shands on Monday for Trevor's infusion. Everything seemed normal. He was in a lot of pain but he seems to be all the time again now. The doctor did stop by and talked to us for a minute even though we did not have an appointment. He wanted to do extra blood tests to see if Trevor had enough antibodies. I called yesterday and still no word. Trevor had to leave school early Tuesday and checked in late on Wednesday. This morning he said his back hurt so bad that he just could not move. Even though he did not feel well, he worried about falling behind I. School. At 9:30 he told Chad he wanted to go to school. He looked awful when I picked him up from the bus stop. He made it though. Dr. Eanett prescribed him a new antibiotic. I am ready for summer. I hope to find the results from the antibodies test tomorrow. Poor kid.

Does this ever end and why can't I stop crying?

Trevor had to go to see his pediatrician again on Tuesday for congestion, sore throat, etc. he again has a sinus infection. He is on antibiotics again. He also prescribed him a nose spray. If he is not better by Friday, he is to return to the doctor. We did not return on Friday, he seems better? He says he feels better or the same, I don't know. I should have taken him. I guess we will see how the weekend goes. He has an appointment with the neurologist on Tuesday the 5th.
Another issue we have been dealing with is school. He does not have even have one fine this year so far. But he says he went to see the guidance counselor on Thursday for not doing work in his class. I guess he and the teacher came to a realization that Trevor needs structure and does not do well with the lack of it. They wrote a list of all of the activities that they need accomplished in this class and I think things will be better.? He has also told me he does not like this class because the teacher really wants him to do a news show about his JA. He says it makes him feel very uncomfortable when she brings up his condition in front of his peers. I don't blame him for that. He also had an issue on Thursday in PE with talking. He and some friends had to sit out. Which if you know trevor is kinda funny because at school he usually does not talk. So that brings us to Friday. He says a friend of his hit a volleyball out of his hands while he was trying to put it away. It almost hit one of the coaches and she was mad. He says he tried to explain but could not get a word in. Anyway, the coach told him that she was going to talk to me and one of his favorite teachers ever. She said she always hears such good things about him from us but maybe we need to hear about this story about how he is behaving. In Trevor's way, he is devastated. He does not cry, he gets angry. So now, he hates his school and just wants to go to a local public school. I am sure this will pass but I really wish I knew what he was going through his head. And if he is acting out, fine him, write him up, tell me. At least I can have some solid hard evidence that something is going on. He barely says a word in his other classes. Needless to say, I think Trevor needs to talk to someone. I can't even imagine how his brain is to comprehend his disease. I am looking for someone now that has dealt with children with chronic illness.
The other week, I saw an episode of Grey's Anatomy. It was season 9 episode 13 which aired on 1-31-2013. I wish I could find just the clip and post it...maybe one day. I can only find the whole show. It is about a 13 year old girl who was a gymnast who had to have a double hip replacement. They never mentioned JA or why she had to have her hips replaced but it seemed so much like the disease. After they do the surgery and the girl does not want to walk. The scene where she is talking to the doctor named Callie made it all clear to me. If you get a chance, watch it. What the little girl says to Callie is heartbreaking. She tries to make Callie realize how it would feel to be in her situation. She was a gymnast, active and now the doctors were hopeful after her hip replacement that she would be able to ride a bike one day. The girl does not want to ride a bike, she wants to be a gymnast! It is really heartbreaking. If Trevor even feels an ounce of that, it crushes me. And yet he has to.
I guess it has taken one full year of this new life we have for me to realize that this is the way it is. I literally have been crying since last night and continue. I don't know when it will stop. I guess I need the counseling too. Why him?

February 11th appointment

The doctor was shocked with how many questions I had for him. Trevor's recent illness brought so many more questions of what to do. Etc. he decided since Trevor was so inflamed he wanted to also give him Toradol to help with the pain and inflammation. This was probably the worst he has ever been when the doctor saw him.
He increased his methotrexate back to 6 pills and gave him a prescription for prednisone just I case he did not feel better in a few days.
Dr. Eanett had told me to get the dosage he is on with all the pre meds and Remicade. He said since the doctors are so far away, it would be a good idea for me to know this. Of course it would. Sometimes, I just don't think of all that medication too! Anyway he is on:
Tylenol- 325 mg
Benedryl - 12.5 mg
Solumedrol- 500 mg
Remicade- 400 mg

The other question I wanted answered was when and not when to take methotrexate. He said the general rule is not to take it until 2 days after a fever and 2/3 days after starting an antibiotic.
He said it was okay to miss a week of methotrexate if he was really sick like before. This helps a lot. I never knew what to do and would get mixed answers from nurses and other doctors. Now I know.
He was concerned with Trevor still having headaches all the time. He wants him to see a neurologist. He recommended All Children's Hospital. I have called to begin the referral process.
All I know is that he feels better. That Toradol and Remicade really helped him. For the first time he was looking forward to this infusion. I hope we stay well and continue on this course. I love life when it seems "normal" and my biggest stress at the moment is having him clean his room!

We are almost there

Trevor's next appointment is Monday. He has not been able to have his infusion since he was so sick. He finished his antibiotics and has been off of them for a few days. So far, no sickness. I hope he responds well and quickly to the infusion.
This has been another really hard week for him. He missed Tuesday and was late on Thursday because of arthritis pain. He decided on Thursday night he would get up at 5:30 a.m.so he could feel okay to go to school by 7:10 a.m. It worked. He took a bath, soaked for a while and just got himself going. Side note: He used to be like me....10 minutes and he was ready to go. He would brush his teeth, wash his face, contacts, and get dressed.....done.
I hope Monday helps and he feels much better. He was there for a little while in December. Stupid, flu (sick) season.

One year ago

It has been one year since Trevor was diagnosed with juvenile arthritis. In some ways I cannot believe it has been that long and others it feels longer. I have learned many thing throughout this year, some good and some not so good. But one thing I have learned (actually just recently) is when your child feels good, embrace that time. Let them embrace it and allow yourself to embrace it. Just relish in the "normal." You never know what is around the corner....hopefully continued normal but for us it has not been (so far).
A dad walked into the school where I walk talking about his daughter being referred to a rheumatologist for JA. I talked to him for a while....enough to let him know I could help him find answers and talk about what his daughter is going through but not enough to scare him. I gave him my phone numbers and hope to hear from his wife one day soon. I immediately thought back to one year ago and I was standing in his place. The unknown, the sadness, the fear, and the "What the heck is this?" My vocabulary has definitely increased since that time but what I didn't want to tell him was that I am still there. Yes, I know a lot more, I can say some "big" impressive words but I am still sad, scared, and everyday say, "What the heck is this?" There is not a day realistically probably an hour that does not go by that I don't worry about Trevor's future and if this horrible disease will ever go away.
Many people relate this disease to a roller coaster. At first I did not think so but now yes. One day he is up and the next down(heck even within an hour). This disease has effected our family structure, friendships, Trevor's schooling, his attendance record, every aspect of our lives. "They" say don't let the disease control you, but how can that be avoided? It literally affects every part of our life. I know I am about to be committed so I cannot even imagine how Trevor feels. He has to endure all of the emotional side of it but feel the pain. He is much stronger than me. I just could not do it. I am proud of how he handles the disease and admire him for it.
I hope next year I can write something much more positive about Trevor's health and where he is on this journey. For now, we just have HOPE!

Ugh!!

When will this ever end? Trevor missed school again on Tuesday of this week and was late on Thursday. He hurts so much more in the mornings. He says he feels like he is on fire.
Tomorrow morning I am going to put his heated mattress pad when I get up,an hour before he gets up to see if that helps. I guess I will have to get him up earlier so he can get use to things and get moving. I feel so bad for him but so frustrated at the same time. I like consistency and this disease is everything but that. If it is driving me crazy, I can't imagine what it is doing to him.
We go to the doctor on Monday for a treatment and to see the doctor. *as long as he does not get sick*
This morning he told me I never let him do anything. I went to work crying. I just want him to improve. I feel like he is going backwards. His back and neck hurt every day now along with his fingers, toes, wrists, knees, feet, and heels.
He was invited to a birthday party this weekend that is at Fantasy of Flight...rope courses and zip lines. Can/will he do it? Of course! And when I take him to the doctor on Monday he will be horrible. I've tried to tell him to take it easy and not feel like he has to do everything but I know him. He will try it. And these are his core friends that all know that he has juvenile arthritis. He is his on worst nightmare!

Trouble, trouble, and more trouble

We have been so busy with doctor's appointments and illness, I have not kept up with the recent developments of Trevor's condition.
First, Wednesday night at 5pm, Trevor's right hand froze into place.
I guess that should have been an indication of things to come but.....I didn't know it at the time.
At around 8:00 I picked Trevor up from church. He began shaking and hurting all over. He went from 98.7 to 101.1 in 30 minutes. He was miserable. I called our pediatrician but he was not on call so I called Shands. I spoke with Dr. Monica. She had me perform various tasks on Trevor. One thing he kept complaining of was chest pain. She said to give him Tylenol and see if he could make it through the night. She said no matter how he felt that I needed to take him to the pediatrician in the morning.
He made it. He was still not feeling well but no fever. I took him to Dr. Eanett and he did a face x-ray and drew blood. He was going to talk to Shands and then decide what to do. The face x-ray showed infection. We went home to wait for the doctor to call. He finally did and told us that Trevor's white blood cell count was extremely high. His inflammation protein was also very high. They put him on an antibiotic and wanted a chest x-ray and an echocardiogram. They wanted to be sure the pneumonia was completely gone and make sure he did not have inflammation in the lining around his heart. (Yes....I was extremely scared!) The chest x-ray was clear and the echo showed no inflammation. He wanted to see him the next day (Friday) to see how he was feeling. When we went on Friday, Trevor was still feeling bad(maybe a little better) but not great. The doctor told us any other pediatrician would put him in the hospital but he really wanted to save us from that. He decided to do a flu test. He told us to come back on Saturday to have more blood taken.(He wanted to be sure his WBC count was down).
We get the call that he tested positive for the flu. So he wants him to take the antibiotic because of the WBC count but also tamiflu.
Dr. Eanett called us after the blood work on Saturday and said his WBC count was back to normal. He still had no idea how the flu or a sinus infection could cause it to increase that much.
He hurt everywhere...(except his face where you would expect him to hurt!) his neck, shoulder blade area, lower back, knees, hands, fingers, toes, ankles, heels, and sides of feet.
Today is Sunday and he is much better. He still has lots of arthritis pain and is congested but feels better. He did not lay in bed all day!
Dr. Eanett said he might have to stay home on Monday but he is ready to go back. He said if he went, he would probably need a nap when he got home.
He coughs a lot still.
I am scared there is so much more to come. What will happen when he goes off the antibiotic again? He was on 3 days off the last 10 day supply. He is on it for 14 days this time. He finishes the tamiflu on Tuesday. Can I keep him in a bubble?

Just a glimpse...

Once in a while we have an evening where Trevor wants to spend the night at a friend's house, or hang out outside.....I miss these days. I get a glimpse of them once in a while. It may only be short lived but when it comes, I miss that "old" life.
Trevor has been struggling with his arthritis from getting pneumonia. He gets tired so easily and has now missed school for not being able to move. He said he hurt in places he has never hurt before. He is getting better now but it was scary for a while. He still has congestion and hurts some and I worry when all the extra medicine(antibiotic and steroid) is done, will it all come back?
He wants to play basketball. I talked to the YMCA today and they agreed to refund the money if the doctor said Trevor could not play. I had to sign him up. I am so tired of being the "bad guy". I am always the one saying don't do this or careful of that...I have tried. I have no idea what the doctor is going to say but I tried. For his mental state maybe for mine but all we can do is ask the doctor on February 4th.
One thing I have learned with having a child with juvenile arthritis is that you never know what tomorrow will bring. Will it be a good day? A bad one? You just never know. For Trevor almost every evening is pretty bad but in this crazy roller coaster of a life once in a while I get a glimpse of the way things used to be, a normal evening, Trevor not wanting to come home and play outside until late and wanting to stay the night at his friend's house.

What a day....

Trevor has had a cold for a while and a cough. Well I finally felt enough was enough and took him to see Dr. Eanett. Trevor has pneumonia. It is not bad enough to be hospitalized but he put him on a strong antibiotic.
I called Shands to make sure they agreed with everything that is going on. They agree and liked that they put him on levaquain.
This is now Sunday and Trevor is better but his Arthritis is really acting up. He told me he forgot how bad he had felt. His back, neck, fingers, hands, feet, heels, toes, ankles, and knees hurt. He is still dizzy feeling but I hope he is okay to go back to school tomorrow. This is the first time he has missed school for illness. He still has quite a cough and sounds congested but he acts so much better.
The doctor also wanted him to go back to 2 times a day on the celebrex. I guess we will see how it goes.
Dr. Eanett kept telling me not to feel bad that it is really hard to know with arthritis kids when to bring them to the doctor. I know he knew I felt so bad about Trevor getting to this point. He told me to use my instinct and best judgement. (I hope I have that!)

January appointment

Trevor had his infusion at Shands on Monday, January 7th. All went well. He actually feel asleep so it was good for him. It felt like we were there forever....I don't know if it was because he was sleeping or what anyway. I hate the drive, the situation.....everything. The good news...Remicade seems to be working. Trevor started feeling bad a week prior to his appointment so it hopefully means it was just wearing off.
Even though we did not have an appointment, Dr. Sukesh stopped and talked for a few minutes. He said since the Remicade seems to be working, he wants him to decrease the celebrex to one time a day(afternoon since that is when he hurts more). I am hoping in February he will take him off it all together.
A new problem we have is that Trevor has a cold. He has had it for almost three weeks. I called the pediatrician and he wants to see him tomorrow. This will complicate the medication Trevor is on. He will have to stop some,etc if he is put on an antibiotic. I hate all these medications!!
I think I am also hitting the point that I am so tired of talking, thinking, and always worrying about juvenile arthritis. I find I don't want to talk to the other parents as much. Unfortunately, the families that stay vocal are the ones that still have problems,etc. it is so difficult to find the families that can give you hope. Don't get me wrong, these families are amazing...willing to help with anything especially with words of encouragement or ideas, whatever. I just want to hear about kids that are better, not in pain, and living a life where they don't think everyday about Arthritis. I am sure it is a normal process in dealing with this disease but it is so different than where I was just a couple months ago. I wanted to know everything and anything I could learn, now...I don't want to hear anything. (Except some nights I do find myself researching studies that were completed on children with JA.). The studies are so mixed...Enthesitis-related JA is so uncommon, there is even less studies done on it than other types of JA. I guess I also think about the year anniversary of Trevor being diagnosed. It is February 20th (5 days after he turned 12). The doctor was hoping to have one year of treatment and than be done. After he failed Enbrel, I knew that was not the case but I wish it was! Okay...I will update after the doctors appointment tomorrow. I am sure many changes will take place. (This is also the first time we will see Trevor's pediatrician since we were officially diagnosed). 😁