Remicade and doctor visit through the fog and rain

Well it was round three of Remicade today. Trevor did well. It seems to get easier each time.
He also saw Dr. Sukesh today. He still sees and feels a lot of inflammation in Trevor's tendons (Enthesitis). Especially the Achilles and heel area. His knees seemed to look better. But his wrists and fingers not so good. Dr. S said we should start to see some results after this infusion. He did say the weather could play a roll. He wants Trevor to "take it easy" during the winter months. He doesn't want him just sitting around but wants him to go a little easy on himself. He really wanted him to stop PE altogether but Trevor's face showed him that was not going to sit well. He told him to not push himself. For the first time he actually told Trevor that he could do damage to himself if he continues to push himself if he is this inflamed. I explained to the doctor that Trevor is his own demise and that at a field day, his teacher made him stop because of the pain he was causing himself. I hope with it being the doctor telling him, he will listen!....probably not, Trevor just asked if he could play basketball this winter. Fortunately, there are not any leagues for his age group until summer. I really need to find something that he loves to do that will help with his competitive drive. I'm working on swimming. I just don't know if he will go for it.
Our next big issue has been headaches. Trevor has had a headache for 7 days straight. The doctor thinks it may be from the methotrexate or that it may be aggravating his already prone self for headaches. He decreased his methotrexate dose to 3 pills. This made Trevor happy. He hates those pills! We will see if it changes anything. I hope.
I think he could see some sadness in Trevor today. He kept asking him if he knew anyone else at school or anything with arthritis.
Oh another concern was Trevor has lost 4 pounds in one month. He really wants to keep an eye on this. He is concerned with inflammatory bowel disease. He said it is not uncommon to see that along with Trevor's type of arthritis. Although he just had the colonoscopy, it can just begin one day.
He also told us that the enthesitis is much harder to control but once you do, it usually has great results. We are ready for that!!!!

2nd round of Remicade

Sorry this post is a little late...I spend more time in doctor's offices than I do at home!  Between Trevor and my mother (who has cancer) I feel like that is all I do!  Anyway...People always tell arthritis or any person with a chronic disease.."Do not let your disease control your life, you control your disease."  (or something like that).  Well I've decided that Trevor has that down to a tee.  He tries to do anything and everything he can do.  Maybe it's denial? Maybe it's a boy thing?  I don't know but I know mentally he does better if he can try to play catch, go outside, etc.  On the other hand, I have decided it 100 % completely controls ME!!!  I think about it probably at least every minute of the day.  I've even gotten to the point that I think maybe I should go back to school and become a scientist to try to figure this whole disease out.(that's really funny if you knew how hard science in college was for me!).  If I am not thinking about it, I am trying to research it.  Any new studies, new medications, new prognosis, and so on.  I just want him pain free and back to himself. 
Anyway, we went again to Shands for Trevor's 2nd round of Remicade.  This time Chad (the husband) did not go but we started out okay.  He was almost done with the infusion when all of the sudden he seemed out of it.  I would talk to him and he wouldn't answer or even acknowledge me.  Well mom panic mode kicked in (internally of course) and I really started to worry.  He just laid there like he was asleep but with his eyes wide open and just staring into space.  When I would ask him a question he would get out of it and say what, what? but then would go right back to this state.  Finally I put the chair down for him and he was asleep, I mean eyes moving behind his eye lids within 2 seconds.  They monitor his blood pressure and temperature every 15 minutes and he seemed okay.  Soon the nurse came over he woke up, she made a comment about him being out of it and then danced for him.  He laughed and seemed back to normal.  I don't know.  I was texting my wonderful friend Heidi (who has two children with JA) that was driving to Shands as I was texting her freaking out.  She said it was probably the Benedryl or one of the medications.  I'm glad he snapped out of it but the first time when Chad went, this did not happen. 
So far, I do not see much improvement with Trevor.  The cooler weather has really gotten him and he aches a lot in addition to the pain he always has in his feet and knees.  We are keeping optimistic and hoping it kicks in soon! 
He told me the other day that in P.E. they were beginning this physical challenge thing.  Before all he ever complained about in P.E. was running.  That really hurt his feet and knees.  Everything else, he would push through any pain and do.  Now, he says that it bothers him to do push ups because it hurts his wrists and ankles and he also hurts when he does sit ups, it hurts his back.  Boy did this take me for a surprise.  That was the stuff a couple months ago he loved to do!!  He knew his tendons and muscles hurt but thought he could at least strengthen his muscles by doing pull ups, sit ups, push ups, etc.  So of course the question I have is, would he be worse without the medication?  If so, this disease is progressing very fast.  Chad tells me that we knew that it progressed fast but I guess I really thought that he would respond immediately to the medication and would be back to normal. 
We go back to the doctor on December 10th.  He will see the doctor and have his infusion.  On a happy note, we actually have our appointments now and the same time as our friends (The Sloan's) so that should make things much better!!!

Here's a picture of Trevor having his 2nd treatment of Remicade.

First round of Remicade....done

This experience is something I don't think anyone can be prepared for. I have taken my mother to the cancer center for chemo for years but when it is children sitting there, it is so emotional. Yes, I held it together but it was hard. Here is my baby laying there with an IV in his arm with Benedryl, a steroid, and Remicade being put into his body. I know all he worried about was the IV. The nurse called it when we first got there. She was amazing, he didn't even feel it. He took a Tylenol (pill form) then the Benedryl was given through his IV. Next came the part we were not prepared for. The steroid! The nurse mentioned that it would cause a metallic taste and mints or lollipops would help. You know the point when your child begins to squirm and move around? We hit this point. I really thought he was going to start throwing up before he even got the Remicade started. He tried the lollipop, no help. The mints helped but he ate about 5 of them. Everything he ate tasted funny and yucky. This latest a long while. The Remicade took 2 hours but was nothing compared to the steroid. I wish I could take his pain and everything he is going through.
The noise in the infusion room reminded me of my last day with my dad. He was in the hospital, quiet, except for the machines beeping and making all their racket. All the machines beeped and made loud noises. The blood pressure machines were compressing and deflating. It was not loud but it was LOUD.
Trevor does not like to sit still so I knew it would be hard for him to sit for this long watching tv or playing a video game. He did it though. Once that medicine put the bad taste in his mouth, he didn't want to move.
He finally fell asleep. The blood pressure cuff would wake him up but he would go right back to sleep.
I wonder which medicine will win? The steroid which makes him wide awake or the Benedryl which makes him tired.When we got home he was still awake but says he is dizzy. I don't know if he is in pain from his JA but hopefully tomorrow we will know more.

Infusions are about to begin

Tuesday, Trevor will be the remicade infusions. I am nervous but have complete faith in the doctor. We did skip a dose of the Enbrel because of insurance issues and at first thought it had never helped him but as days went by, we could tell a difference. One evening Trevor and some friends were tossing the football out front and they all came running in saying that Trevor was hurt. I went outside and Allie and I had to carry him inside. His big toe area hurt. It was swollen. I really didn't know what to do so I put ice on it. Usually we do heat but for some reason I thought ice in case he sprained it. They all said he was running and just fell to the ground. That night Chad had to carry him to the tub, and carry him to bed. I was ready for Shands the next day. He was better and each day got better. The first day or two his shoe was really tight and he just had to tuck his laces in.
I really hope the infusions help. We are getting a blanket for him and some movies to download onto my iPad for him to watch. They say it should take four hours. We will be exhausted on Wednesday I am sure. So far, his teachers have been very good and supportive of the time he is going to miss.
A question I have for the doctor the next time we see him...when Trevor gets up in the morning he cracks with every step. I can actually tell if it is Trevor or Allie walking around by his sound. Is that normal? I am scared to ask because it just doesn't seem like it would be good.
I will post the first infusion experience after Tuesday. We are hoping to catch a glimpse of the Gators practice after his appointment if he is up to it. Especially after their big win to South Carolina this weekend!

Really a rash???

I have heard of many arthritis suffers developing rashes but once again thought, oh, not Trevor, "that is a different kind of JA."  Actually the Friday before his appointment he had just gotten this red dot rash on both ankles. No pain, no itching, nothing else.  The doctor did look at them.  Now that is gone (only latest about 3 days) but he has a rough feeling around the same spot on both of his ankles. And these itch!!  What is this????  Everyday, it seems like it is something else.  When is this all going to stop????  I am trying to keep a positive attitude but I just don't understand when things will go back to normal.  I hear all of these stories of families with children so much worse than Trevor and am thankful that he is "not so bad," but it really scares me that in a few months or years, he is going to be right there with these other children. 
He started the Celebrex again today and so far his stomach does not seem to bother him.  I hope that continues and he starts to see a little relief from the Celebrex, at least until he gets started on the Remicade. 
Tomorrow is World Arthritis Day and I am encouraging everyone to wear blue for arthritis!!!

The latest

I really don't know how I feel right now. I think I may still be in shock (which I think I live in right now). We went to see Dr. Sukesh at Shands. We are almost 4 months on Enbrel. He was very disappointed in Trevor's condition. He looked and felt worse than when we started this. The doctor has an ultrasound and was able to look at Trevor's joints and tendons. He looked at this wrist and foot. He had inflammation everywhere and fluid around the joints and tendons. He really saw the enthesitis (tendons). The. Sukesh said the Enbrel should be working by now. So he really wants him on remicade. He will begin in 2 weeks (once insurance approves it and they get the medication). He will go in 2 weeks than in another 2 weeks than monthly. The first four weeks will take 4 hours. Remicade is infusion based so we met the nurses in the infusion room. They all seemed nice but I could see the fear in Trevor's face. It really scares me to think of seeing him sitting in the chair with the IV and pole thing.
After the first four weeks it should take just 2 hours. The first couple, they have to be sure he does not have a reaction to the meds,etc.
Trevor did such a great job naming and pronouncing all of the meds he is on. I love how Dr. Sukesh talks to him also and wants to know his opinion as well. I just can't get the image of the doctor's face out of my mind when he looked at Trevor's wrist. He could not bend it down that far. He said Trevor is in a lot of pain. He could really tell that from the ultrasound.
He also wants to put him back on Celebrex. He seemed to feel better on that than Mobic but it bothered his stomach. He also increased his Prilosec to help with the stomach. I am hoping to get the Celebrex started this week so we can see if there is any improvement before the remicade.
I really don't know how these moms do this. I feel like I am on a roller coaster that I cannot get off of. I really felt deep down that he was going to put him on remicade which makes me sad but I also feel deep down that this is going to work. It has to.
Trevor is hurting so much today. He played football at PE and ran for a touchdown which I think really irritated him. I feel so bad for him. I pray one day he can run and not feel pain and not have to suffer for just wanting to be a kid.

Camp Boggy Creek....amazing!

We just got back from the family weekend retreat from Camp Boggy Creek. The staff members,volunteers, etc are wonderful. I don't know how they can have such fantastic people all in one place. I feel so blessed that we were able to go and meet families, reconnect with families from conference and just experience the camp. I wish everyone could experience it!!! Okay for the good, bad and just weird.
First, as I was sitting in a "break out group" listening to the others mom talking and sharing their stories, I actually thought, "What am I doing here?" I know we have been giving shots, meds, gone to St. Louis for a conference, etc this Disease has completely changed our lives and it just hits me....I'm in denial. All I could think was how did I ever get here? What am I doing here? I shouldn't be here. So I now just want to cry. I hate not knowing Trevor's future....Will he grow? Will he ever have a day pain free? Will we ever find the right medicine? Is there a right medicine for him? Maybe this is all wrong!
Second, Dr. Sukesh is one of the most amazing people I have ever met. There are not too many things in this world that impress me any more but Dr. Sukesh is definitely one of them. He volunteered this weekend at the camp. (they always have a doctor on staff, just in case). Many families are there and Trevor is off with his (PAL) counselor and runs into Dr. Sukesh. He greets Trevor by name and asks how he is doing, etc. Our family sees Dr. Sukesh later in the day and talks to him. He asks about Trevor then says you have an appointment coming up in the next week or so, right? Yes!!! We talk a little about Trevor but tell him we will talk at his appointment. This morning before we left camp, we see Trevor and his PAL playing ping pong and who is sitting there watching? Dr. Sukesh! We greet him and he asks me if Trevor's pain is more severe in the evening. I tell him yes and I tell/ask that is not usually the case. He agrees and tells me he has been watching Trevor and can tell the difference in the morning and the evening with him. He is going to use some new ultrasound they got to look at his joints and tendons on the 8th. I cannot sing that mans praises enough!!! We have only seen him 3 times!!! I loved that he volunteers for things like this. He gets to see the kids outside the office and in the real world!!!
I just pray everyday that I will write the words remissions.

I miss the old Trevor

It is really sad, it is only once in a while that I get to see the "old" Trevor. Now a days, he seems so sad. He will go and hang out with his friends and being doing stuff but deep down he is different. I pray everyday that he will come back to me but I know he is forever changed. We all are. I really worry that nothing is going to help him. I try to keep positive and know something is going to work. I know he worries about this too. I think deep down I have given up on Enbrel. I think he would see some relief by now. I just don't know what is next. Humira? Remicade? I don't know. I keep telling him that if is not Enbrel that is going to help that it is something. I told him we want him to be the exact opposite of where he is now. We want him to have more good days then bad.
Insurance is really becoming an issue now. We have to get better insurance. I am trying to work on that.
In the mean time,I just enjoy the small glimpse of the old Trevor when he comes out.

Still waiting

Well we are on the 7th week of Enbrel and Trevor does not have any relief. It is so discouraging. I really thought we would begin school and be much better. Trevor is counting the weeks and knows that he should be feeling better. I just tell him to give it more time and that sometimes it takes longer in some kids.
Yesterday he was outside playing with friends and he said his knee gave out and hurt really bad. He said it was a different kind of pain. He took a warm bath and we watched it. It was really swollen. When he got up this morning, he said it felt much better. This afternoon, it was not as swollen. This brings up the question I always ask, "Can he do damage to himself by doing too much physical exercise?". He does not understand stop or slow down. I have heard so many different things regarding this and think that the true answer is no one knows!
I just don't want him to lose hope.
I am thankful that our school does not have stairs, neither does his high school. The stairs would not work for him. (These days, I have to find "good" in the little things).
We have applied to attend the family Camp Boggy Creek weekend. I hope to hear from them soon!
I wish I had a more positive post...one day...

Will we ever be "normal" again?

Trevor cried last night because of the pain. He is starting to question the Enbrel and when/if it will start working. He told me he now thinks he is willing to give up all the fun things he used to be able to do so he is no longer in pain. So sad. :( I tried to help him think of all the things he can do without hurting but I am amazed how that list seems to be getting shorter. Now he says it hurts his back to sit on the wall to fish. Will this ever stop?? It really seems that Trevor has gotten worse. We always said it was because he has been more active but I don't know. We are on week 4 of Enbrel. I am really nervous for school to start!!

Unfair

Today I feel so bad for Trevor. Two almost three years ago we moved into our current neighborhood so the kids could have lots of other kids to play with,etc. Our section of the neighborhood turned out to be older retired people so not many kids for Trevor. Anyway a couple weeks ago finally a new family moved in across the street. Trevor and he hit it off great. You can not separate the two of them. Anyway, Trevor is paying for it everyday. They play basketball, fish, tennis, ride bikes, scooters, everything. Trevor cannot keep up. Today he had to just leave and come home because of the pain.(they had actually spent most of the day inside anyway because of his pain). He had to hold the walls and furniture to get into the shower. He is now laying under a heated blanket with a 90 degree temperature outside! Sometimes life is just not fair. I really am worried that the Enbrel is not working. This will be the end of the 3rd week on it and so far nothing. In fact, he seems to be getting worse. I know it is just because he is more active all day everyday but he does not want to stop. I researched and found some people have the injection,even the first and get up the next morning renewed. I thought that was going to be Trevor. It really makes me cry. I HATE to see him like this. He said to me he thought it was good that his new friend was going to Sea World tomorrow so he could just lay around all day. This is so not Trevor!!! I can only hope and pray that he gets relief from something!

Heart breaking

During the JA Conference, we did a lot of walking, etc. It was so sad because many times Trevor could just not walk any more. One occasion Chad had to carry him for 8 blocks. Another occasion, he had to skip going to the St. Louis Arch because he could just not go anymore. Heartbreaking!!!! So many of the other JA kids have wheelchairs and I thought, he isn't that bad or he won't get to that point but now I am starting to think otherwise. This is devastating along with this entire disease!!! I would in know way allow him to use it when not necessary but I also hate that he is now missing out on things he wants to do because he is not physically able to do it! A friend of ours had one and wheeled him around for a little while and he said it was nice to get off his feet. Again heartbreaking!!!!
Trevor has had his 5th Enbrel injection now and has had no relief what-so-ever. Giving him the injection has gotten better, well in St. Louis maybe not so well. He bruised!!! I of course was surrounded by many parents who give injections all the time and they informed me that I just hit a vein. Really just hit a vein!!! I felt awful!!! One of the moms told me that her son's rheumy said just to give it if not, I would have stick him again! Anyway, next one that I did on Tuesday, went better! He said it did not hurt at all.

JA conference

What an amazing experience! We attended the 2012 JA Conference in St. Louis. It was great to learn so much from the various speakers, doctors,etc. It was so great to meet other families going exactly what you are going through. It was great to ask them questions also. One surprise I noticed was the amount of families that had a genetic link to arthritis. I almost felt like we were a minority....but the statistics do not show this...very interesting! Next year it is in Anaheim , CA so I hope we can attend again! By then we will know so much more of Trevor's response to the meds, etc.

2nd Enbrel Injection....check

Yesterday evening, I gave Trevor his next Enbrel injection. It was MUCH easier this time, I only had a migraine for about an hour after giving it!!
He actually didn't even release I gave it to him. I was soooo excited, and so pleased with myself until I almost stuck myself with the needle! I guess I din't need to get too cocky!
I do however know, that we CAN do this and it really does get better!!! I always heard that but I really never thought that "passing out after looking at a needle Julie" could do this, she (I) can!
On a different but similar note, we leave for the national JA conference in St. Louis tomorrow!! We are so excited!! I will blog more during and after and have LOTS of pictures.

I don't know if I have written it before but the Arthritis Foundation is amazing! The Florida chapter has given us a $1500.00 scholarship to attend the conference. There are 19 Florida families going. I am so excited to connect, share, and learn anything and everything I can. There is a huge support out there for people with arthritis!!
Okay, on to packing... Next fear, getting through security with the Enbrel shot!!! I think I am ready (he he)!
Did I mention, that this was Allie and Trevor's first time flying? It will be fun!

I did it!

I actually gave Trevor his Enbrel injection. I did not think I would be able to do it. I am so relieved but keep over thinking things... Is there a better technique? Did I hurt him even though he said I did not? And worst of all, can I do it again?? He ran off to play basketball and fish so I guess I did not hurt him too bad.
What a strange feeling, putting a needle into someone. I tried so hard to "look" like I was calm. Right before, I almost chickened out but thought that would make Trevor even more nervous. I know it will get easier but I am really scared about the next time. Maybe the third time will be the charm and take the nerves away from me.
I must say though that is one thing I NEVER thought I would be able to do and I have accomplished it! Unfortunately, I do have to continue giving the injections.
I gave it to him one hour ago and I am still shaking and think I might need a sip of wine!! Well, until next week!

And of course Tim Tebow

A little fun after the appointment...

We finally started Enbrel!!!!

Finally after what seems like months, we began the Enbrel on July 9, 2012.  We went to Shands for Trevor's appointment.  Pam, the wonderful nurse practitioner trained us and she actually gave him his first injection.  He said it hurt for 2 seconds.  Friday will be the day I have to give him the next one.  Please pray!!!  I practiced on a squishy pig and did pretty well.  Since Trevor does not really like to take the Celebrex 2 times a day, they changed him to Mobic.  He will take that just one time a day.  He also decided to decrease his Mtx dose to 6 pills instead of the 10 pills.  Trevor has been having some nausea and actually vomited on Saturday, July 7th right after taking the Leucovorin.  They are also adding folic acid every day to help with the side effects of the Mtx.  So medication wise, this is where we stand:
Methotrexate 6- 2.5 mg pills one time a week (Friday)
Leucovorin calcium 5 mg one time a week (Saturday)
Omeprazole 20 mg- 1 pill a day (every morning before breakfast)
Mobic 7.5 mg- 1 pill a day with breakfast
Folic acid-1 pill a day with breakfast except on Mtx day (Friday)
Enbrel 25 mg- 2 shots a week (Tuesday and Friday)

He is able to have all of his required vaccines for 7th grade since he already had the live virus one.  The doctor also wants him to have the flu shot but not the mist only the shot!!!

I have to write this down because I don't know if I can keep it all straight!

I really feel like we are on the right path.  Trevor has been having some really bad days recently. (He has been much more active with it being summer and all). 
Yesterday at the doctor, his feet and knees were VERY swollen and warm and painful.  This was probably the worst he has been at an appointment. 

The Arthritis Foundation is amazing!  We are leaving to go to the National JA conference on Thursday, July 19th!  I hope we come up packed with more knowledge and resources!  19 families from Florida are attending.  I cannot wait!!!

I really don't know where this journey is leading us.  I NEVER thought we would ever go through anything like this.  I know Trevor is a very strong person and will overcome this disease!!!  I am just ready for that to begin!!!  Until that time, our travels continue...

Latest on T

Trevor is doing okay. Some weekends he is so tired and nauseous. Last night he actually woke me up complaining of major head pain and nausea. I was helpless. I just laid down with him, after giving him some naproxen. I didn't know what to give him or what to do. He had not had Celebrex in a couple days do figured it was okay to give him the naproxen. Today was much better. I am calling the doctor tomorrow to get something for nausea just in case.
He goes to Camp Boggy Creek tomorrow. He is nervous and excited!
We got the scholarship to the JA Conference in St. Louis! We are so excited!
We also got the Enbrel. The script is written for two times a week. I was not expecting that. We will get through this. I know that. We have to wait to talk to the doctor tomorrow. He had recommended having Dr. Eanett's nurses show us how to give the injections but his nurse told us to hold them and bring them to the appointment with us. I will get more clarification.
I always think back to just last summer and how different it was....no pain, no medication, and no fear of the unknown.
I know God has a plan for us and we will get through this.
I will post more when We start the Enbrel.

GI procedures complete

Trevor had a colonoscopy and endoscopy on Thursday, May 24th. Dr. Kaiser does not think he has IBD. The biopsy will be back on Tuesday to confirm but he was very optimistic. So most likely, Trevor will begin Enbrel. I am ready for him to get some relief from all the pain!!
In the meantime, I have transferred all of Trevor's prescriptions to Walgreens. We used Publix but there are some communication problems with them and doctors. I cannot deal with the time or energy it was taking to get his prescriptions refilled. I hope Walgreens works better for us. As always, more to come.

Along comes the Holland Story!

Right after I wrote the last post, feeling sad and sorry, I read a post on an arthritis group that said that everyone needed to read the Holland Story. I did and Wow. I have bookmarked it to read over and over. I'm not quite enjoying Holland but it gives me hope that one day I will. Google the Holland Story to read it!

Just when I think things can't get worse!

Trevor saw the GI doctor on Monday ( Dr. Kaiser-@ All Children's) Three different tests show inflammation in his stomach and intestines. He will have an endoscopy and colonoscopy on Thursday, May 24th. I'm scared. Scared of the tests, scared of the results and scared of the not knowing. Ever since the appointment, he has had stomach pain. He has had to leave school and sleep most of the day in class one day! They didn't do anything at the appointment except an examine. If he has Inflammatory Bowel Disease, he will have to go on Remlicade (infusions once a month at Shands). If he does not, he will go on Enbrel. Sounds great, right.....I either get to chase my 12 year old around the house to give him a shot or travel 2 1/2 hours once a month to sit 2 hours and watch him have poison injected into him. I just pray one day he goes into remission.
One a good note, we went to the Arthritis Walk in Orlando. It was fun and I think Trevor really felt the support he has around him.
I really wish that people knew this was more than just a Tylenol arthritis commercial.
I am applying for a scholarship to attend the National JA Conference in St. Louis. I am hoping to learn more.

Trevor meets his idol

It is always something...

We went back to Shands for our second appointment. We figured we would be told Trevor would be put on Enbrel or Humira and be on our way. We knew talking Trevor into these meds would be difficult but knew this would be our fate. No....one of Trevor's tests showed inflammation in his bowel. Normal range is 0-120. Trevor was a 120. Dr. Sukesh said he considered this high. He made the referral to a pediatric GI. He said he cannot determine what medication to put him on until we determine if he has Colitis or Crohn's. If he does have inflammatory bowel disease, he will have to have infusions once a month at Shands. If he does not, he will go in Enbrel. Trevor had told Dr. Sukesh that the naproxen was not working. He put him on Celebrex.

We have an appointment with Dr. Kaiser on May14th. He will probably schedule a scope and colonoscopy.

Trevor has only been on Celebrex for a couple days but it seems to be helping.

Today, he is having a bad day. There's always tomorrow!

The Arthritis walk is in a couple weeks and we are excited about that. We hope Trevor can get to meet some other children with JA.

Also on a happy note...he got into Camp Boggy. It is a free camp for children with JA with doctors and nurses that stay 24 hours. They will give injections and all other mess to the children!

LIttle scare

We had a little scare yesterday.  Trevor told me he felt like his eyes were going to pop out of his head.  I called Shands and they said to get him seen by pediatric opthamologist asap.  We saw Dr. Williams-Wallace in Brandon.  She said he did not have any cells and showed no signs of ever having inflammation.  YAY!  This is great news!  His vision had changed quite a bit but is probably just because of my bad eye genes!  The doctor said for a child his age it is really rare for them to have eye issues however because he is HLA-B27 positive, his risk does increase 25%. We don't know why his eyes felt that way but I feel much better that he does not have any cells!!!

504 plan

Just a little update.  Saturday afternoon Trevor was more tired than usual and took a nap.  On Sunday morning he said he felt nauseous but never got sick.
Monday we had Trevor's 504 plan at school.  It went very well.  The teachers and coaches are all concerned about Trevor and making sure he is accommodated.  During FCAT testing students are not able to stand up which might be a little challenging for him but he does not want to move to different room, he wants to take the test with his teacher and his class.
Trevor did tell me that when he feels stiff from sitting too long in class he goes and pretends to staple his paper just to move around a little.  His teacher told me he also goes and gets hand sanitizer.  (Hopefully he is keeping those germs away!)  I hate not knowing what the future holds or wondering and praying that we have a "good" weekend.  I hate that on Friday Trevor has to take 13 pills (3 different medications) But... I also know that there are so many more people worse off than us.  And I am thankful for what we have and where we are on this journey.  If you would have asked me one year ago about Juvenile Arthritis, I would not have even known what you were talking about or even fathom that I would have a child that was a completely healthy baby, toddler,  and adolescent with such a disease.
On a side note...Trevor loves Tim Tebow.  He has since his Florida Gator days.  I have been working so hard along with Trevor's teacher to have him meet Tim.  He will be in Lakeland for the 2012 Leadership Forum at Southeastern University.  So far we have not been successful.  Tim's annual golf tournament is outside of Jacksonville on April 14th.  We are going to the tournament in hopes Trevor can just see him.

The 2nd weekend...

Trevor is doing amazing with the medication.  We gave him his 2nd dose last night and this morning he is up and going "hunting" with his dad and friends.  He said he feels tired but that is about all.  He is still in pain EVERYDAY and is ready for that to stop but we know the doctor said it is going to take a combination of the Methotrexate and another medication (something like Enbrel) that he will start in April to get the pain and symptoms to go away eventually.  He has such an wonderful attitude and really only complains to us at home.  I don't see a difference with his pain level on the higher dose of Naproxen.  Maybe it does take away some of his pain but he is still hurting all of the time. This weekend he did not complain about taking all the meds and did not say "He wanted this all to stop."  Hopefully all the medications will become a habit and not be such a big deal!
Everyday he puts his sun block on even to go to school.  He is very dedicated to doing everything the doctor tells him to do!  We have his 504 meeting at school on Monday so we will see how that goes.  In PE, if the student cannot participate in the activity, they generally make them write papers about sports, etc.  Trevor does not want to write papers at PE, he wants to strength train (push-ups, sit ups, chin ups).  They begin a series on track and running just hurts him too much!  We will see what they say at the meeting.  Why should a child that wants to do physical activity be  forced to write a paper in PE?
I tell Trevor the song by Kelly Clarkson, "What Doesn't Kill You Makes You Stronger" reminds me of him!  He is a fighter and will stand a little taller one day!

First dose of Methotrexate

Trevor started the Methotrexate last night.  I was so scared to give him the medication.  I didn't want to scare him but in the same sense I wanted him to come get me if he got sick or felt funny during the night.  He only woke up one time and said he felt "dizzy" but went right back to sleep.  When he got up this morning he seems tired but is doing fine. So far so good, but I realize we are only on the first dose. He wants to play in his last basketball game today.  The doctor told him he was okay to play so off we go...

Trevor at Shands on February 20, 2012

His 1st visit of many...He's such a Gator fan!!

Trevor's Travel begins

We love to travel and the thrill of adventure however, this is one adventure we were not prepared for or even wanted to take. Trevor was an active 11 year old boy.  He played football, basketball, ran, etc.  He was ALWAYS moving.  During the summer of 2011 we noticed he started to limp and complain that his leg hurt.  We told him for probably 2 months that it was just growing pains.  His dad had really bad growing pains so what else could it be?  One day when family was over (a couple in the medical field) they said they noticed Trevor's knees looked swollen.  (Side note: You know as a mother when they are younger, you bathe them, and "look them over" to be sure everything looks normal.  Once they get older, you don't "check them over" as much unless they complain about something.)  After that day, we made an appointment for Trevor with his pediatrician, Dr. Eanett (he has been his doctor since he was born).  The doctor did many tests, put him on Aleve, and followed Trevor for at least four months.  He said sometimes children can get a virus that causes these type of symptoms.  He was very optimistic that it would eventually go away.  After over 4 months, he finally made the referral to a pediatric rheumatologist.  He said he believed he had Enthesitis-related Juvenile Arthritis (ERA).   More blood work was done and it was found, Trevor carries a gene (HLA-B27).  This gene is common in children with ERA.  Two months later, February 20, 2012, we were at Shands.  Trevor saw Dr. Sukumaran.  He made the diagnosis of ERA and prescribed a higher dose of Naproxen (375 mg, 2 times a day) and Omeprazole 20 mg (1 time a day), Methotrexate (2.5 mg, 10 pills on Friday night) and Leucovorin Calcium (5 mg, taken Saturday night after the Methotrexate).  He wanted Trevor to have an eye exam (which is scheduled for April 6, 2012) with Dr. Williams-Wallace in Brandon.  And so Trevor's Travels begin...