Stable!

I know- it's been forever since I have written. Life has finally evened out, but for a little while it was so odd and difficult that I didn't really know what to say. We kept having more problems with no reasons, and I just simply didn't feel positive enough to post.   Emily was really doing poorly, and I didn't really have any good answers.  I knew that there had to be something that was being overlooked.  The problem with having so many specialists is that they are just that- specialists.  ENT doesn't know much about gastroenterology; endocrinology doesn't either.  To get everyone on the same page can be a real challenge that requires quite a bit of persistence.

I'm sure some of you were thinking, "what the heck is she doing?" Or, "does she want the kids to have more doctors?"  Totally not. It almost drove me crazy. What we did do is take a chance. And it seems to be working. 

We got ENT involved. We had to subject her to another sinus culture, which she actually wanted. She wanted that crap sucked out. What we found is that she did not have a year-long sinus infection; it was all due to reflux. The ENT suggested we use a hyper-tonic saline, & follow-up with GI. So we got with her gastroenterologist. They scoped her. They think she may have EoE, eosonphilic esophagitis, but while she is still on steroids we won't have an accurate scope. They suggested we change her Prilosec to twice a day, which I had wanted anyway.  She is now doing so much better!!!  She hasn't really been "sick" in a while, and she can eat. Hooray!

The other thing that y'all may have thought I was crazy about- growth hormones. While I hate having to give her a shot nightly, this has been such a blessing. She never agrees with me when I say this but she seems to be so much better. She seems to feel less pain, which is a big reason we wanted to start her on the GH. It also doesn't hurt that she is finally growing, after years of little to no growth. It has truly been a Godsend. I had to be pushed into it, and I am so grateful to those that pushed and helped me to research it so I knew what to look for to get the ball rolling. Next step is a gym membership so they can get a good daily workout, hopefully with other kids. 

Emily had an amazing time at camp!  We are so grateful to her camp and the Arthritis Foundation. She really loved her cabin mates this time.  It is such a huge blessing to see her happy and shining. 

Zach is doing better than most, but he was warm and slightly swollen all over at his last appointment 2 weeks ago. All of his pertinent labs looked good, so now we are just watching him. Overall we can't complain. He's been on Enbrel since February 2011 (I think), and holding steady. The weekly methotrexate really seems to help. He's one of the lucky kids that has no side effects. 

Tomorrow we see a new opthamologist. Our rheumies want both kids checked for Sjogren's symptoms. Emily's labs are positive for it, and both kids have had dry eyes. Hopefully that will be good.  Overall, things are good!  I love quiet and boring, but it certainly doesn't lead to a productive blog. We have simply been enjoying it. :). I'll post as things happen, but for now we are enjoying the quiet. <3

How are your kids doing?

Every day I have people ask me how my children are doing.  I truly appreciate this.  It can help me loosen up a little bit, just knowing that someone cares enough to ask!  However, here's the catch:  I never really know day to day.   Emily is the hardest to tell.  She'll complain for a week about a cold sore, but she won't complain about the fact that she can't walk.  That was exactly the case in October 2010 when she was officially diagnosed with JDM.  She'll complain about a scrape, but not because her head hurts from having her sinuses scraped.  She tends to complain more when there is much less pain.  The worse she feels, the less she says.  When you ask her how she is feeling, the automatic response is "Good".  Sometimes we can pick up cues.  Other times we truly are left to guess.

Zach is more vocal right now.  He's much more quick to tell you when something is wrong.  BUT, the worst parts of the disease are what you can't see, so how can I really know for sure?

I have also had several people lately ask me if this could be because of environmental factors, diet, etc.  I will try to make this easy to understand, but it's difficult subject matter, and the scientists aren't 100% sure yet.  Say you have an electrical circuit that is working fine.  Everything is working as intended.  Suddenly, something happens- a trigger is pulled, a lever or switch.  That opens the circuit up, right?  Until that circuit is closed, it won't be right, it will cause problems.  The immune system is the same way.  Here's the problem- the "switch" in this case is invisible.  It leaves no trace.  And you may not  even know that the circuit is open for many years.  Some people have symptoms many, many years before the disease hits.  Once it hits however... Some people are lucky enough to be well managed with just one or two treatments.  Others never seem to be able to find anything that helps.  For a small percentage a significant diet change will help and heal them forever.  Most people find no relief through diet change.  And, if it's an environmental trigger, removing the trigger doesn't help.  We had mold in our wall that went undetected until 3 out of 5 of us got very sick.  We had NO clue that we had mold.  It was hiding up in the rafters of the attic above our kitchen and bathroom.  It was removed, and I know it's gone (because I am extremely sensitive to mold).  That doesn't seem to matter.  Other triggers are bacteria like strep.  Strep and pneumonia can set off autoimmune diseases like RA.  Again, once that trigger is pulled there is no going back.

When I tell people about my kids' situations they often ask me "Are you sure you don't have mold in the house?"  Yes, but even if we did it wouldn't change this either way at this point.  Oh, it may speed it up if we still had mold, but it won't magically reverse.

My kids "good" is different from other people's.  If I don't know how to answer you, please don't think it's anything more than just "I don't know".  As lame as it may sound,  we just don't know.  Some days bring severe fatigue.  Some days bring severe pain.  Other days bring stiffness, and still others bring all of the above.  For my kids, most of the time their pain is lessened.  Em does pretty darn well.  I think it's actually more because she has gotten used to the pain.  Also, remember that a simple cold can become a huge ordeal because their immune systems are suppressed.  This means that, while you & I can fight off a cold or have a simple round of antibiotics "cure" us, this often isn't the case with immune suppressed people.  They fight and fight but it doesn't always work without a LOT of intervention.  This is our life.  We make the best out of it.

Counterbalance II- The Year in Review

I hope that everyone had a wonderful Christmas, Chanukah, or whatever you celebrate!  We have been very blessed this year.  My kids had probably one of the best Christmas' ever.  We made some great memories with family, had some great meals, we watched a historical documentary of the birth of Christ, and just enjoyed.  I hope that you & your family did, also.

For those of you that know us in "real life" or have been following the blog for the past year, you know the crazy roller coaster ride that we have been on.  I know that not everyone has the same religious beliefs as me, but I truly believe that we are constantly being tested and consequently rewarded.  I feel as though we are living testimony to the miracles of Jesus.  Many will argue with me; while I wish that you could believe what I do, I respect your beliefs.  I promise not to drone on about my love for Jesus the whole time, but I'll pray for you ;).

Last December our family was very down.  It was only last October that Emily was diagnosed with the Dermatomyositis, and December brought one of several months of severe steroid swelling.  The child was so swollen that her eyes couldn't open all of the way.  She went from 42 pre-steroid pounds (which we rejoiced at because we couldn't get her to gain weight before) to 75lbs in about 2 months.  It was shocking.  This time last year, Emily was so depressed that she couldn't think of even one thing that would bring her joy.  That was when I first started looking into Make A Wish.  Being a systemic disease (that can attack her organs), and because so many of her medicines can have very severe side effects, she easily qualified.  December also brought us a secret Santa.  Despite Kevin being unemployed, we did well enough to be able to afford a decent Christmas for the kids, but then we had this huge blessing appear on our doorstep.  Words couldn't express how giddy it made us.  It was a bright light during a very dark time.

I think it was February that Make-A-Wish informed us that they could help Emily.  This was the start of  a slow change in personality for Emily.  It's amazing what HOPE can do.  It helped her come from deeply depressed to back to a spunky little girl.  We set a date for March to meet our wish givers.

March came, and we had to post-pone the meeting with our wish givers because Kevin had to have radiation for his thyroid cancer.  We had found out about it the past November (at MY doctor's appointment, without him even with me!), but he chose to put it off a couple of months because it required an iodine-free diet.  He wanted to get past the holidays, but then it took months to get his thyroid levels to crash low enough to do the scans.  It wasn't very funny then, but he had come home saying "I can't be within 6 feet of anyone, I have to use plastic silverware and plates and put everything aside for a week or it will raise alarms at the dump.  Oh, and my half-life expires on May 21".  We had originally been told all that we needed was a seperate bathroom....  It was the following week that we met Em's wish givers.  They told us that they would work on her Disney wish! March was also when my mom first told me that there was "something" wrong with her, then tried to retract it because she didn't want to seek medical help.

In April we had a nice break with a Cub Scout camping trip.  We needed that!!!  Later in April we were told that Emily's primary wish would be granted!  Oh, how exciting that was!!!  I think that, in some ways, this made us worried because nothing ever goes smoothly for us.  I don't know why, but there's always a crisis of some sort, so we kind of waited with baited breath.  They were working on a vacation date as early as May!  We couldn't believe it may be so early. 

May brought Emily's Disney trip!  Now, you may think, you live in Florida; why go to Disney?  When faced with the ups and downs that we have been faced with, when you live too far away for a yearly pass, it just seems out of the question.  Make A Wish and Give Kids the World truly made it a magical, amazingly special week that she still talks about as though it were yesterday, especially her meeting with Rapunzel.  We were able to spoil the other two kids, and just try to forget all of the appointments, the problems, the finances, and just enjoy family time. And we actually had quite a bit of money left over (we had become very used to being frugal!)  That made us decide to take a huge jump that we really shouldn't have, but needed to.  Which led us to June & July.

 In June we spontaneously put in for a scholarship from the Arthritis Foundation to go to the JA Conference in Washington DC.  I wasn't going to apply this year, so I put it in late because I wanted to be considered last.  After all, we had an amazing Disney trip; not everyone could say that, & also because we had gone the previous year to the conference, but only Emily & I.  I found out the week that we were helping at Cub Scout camp that we won a scholarship!  That meant that we could afford to drive up and have all of the family go.  I didn't want it to be just Emily & I again.  We were very excited!  This is how we spent the rest of the MAW money.  This month also brought a speeding ticket that I deserved (yes, my bad.)  I was totally preoccupied thinking about the dermatologist appointment that we were heading to for Zach.  His psoriasis had been beyond-our-control-persistent.  The doctor gave him injections which didn't really help, and more creams.  I was really starting to feel frustration at this point because it was really taking over him.

In July Em's doctor's suggested adding a new medicine to her IV infusions, and they also asked us to consider getting Emily a port to make her infusions easier.  They were getting worse and worse.  This brought us to the conference with a whole lot of new question to ask (and a new speeding ticket that I did NOT deserve!).  All that I can say about that is there are some officers that should really be ashamed to call themselves law enforcement.  The conference brought us some amazing memories.  It was so cool to go and meet so many of the people that I've met on Facebook!  It really felt like being with family.  I'm always the shy one that doesn't know what to do around people, but this was different.  We learned some great things about Rituxan that encouraged us to try it, and had the opportunity to speak to Dr. Lisa Rider, who co-wrote "the book" on Juvenile Myositis.  She had her first dosage just after we got home & she noted a difference right away.  We decided to go ahead with the port.  While at the conference we took a jaw class because we knew nothing about jaw issues, only to find out that we would soon need that info.  We detoured on the way home and spent two nights camping in the mountains.  Secretly, I was hoping our house would have burnt down while we were gone so that we could go back to live in the mountains.  I'd be happy living in a tent in Cades Cove.  It is heaven.  <3  That's where my heart lives.

One morning in August, my son walked up to me and says "Mom, my jaw is clicking & it hurts".  I'm pretty sure my heart stopped.  With his psoriasis being so, so bad, I had been expecting "Arthur" to rear his ugly head at some point.  This led to a frantic mission, how to get him diagnosed.  Doctor's often like to think that you're "just being paranoid".  Let me tell you, I'm beyond paranoid.  I'm in reality, & our reality is that things go wrong.  However, as long as we face them head on and quickly, we can deal.  It's when things drag out that they become more complicated.  So, I had a lot of work to do that would certainly have been much easier to do if I had a medical degree.  I really need to work on that. Somehow I almost forgot to point out that it was in August that my mother was diagnosed with colon cancer, which brought emergency surgery & a while host if new problems.

In September we were randomly chosen to have 2 tickets to a concert that I desperately wanted to go to but knew that we couldn't afford.  Despite Kevin still not working, I had continued to give in faith to The JOY FM.  They do a lot of good for the community, and they have been a huge blessing to me.  I never thought we would get free tickets!!!  Oh, I was so excited!!!  I took Emily with me.  She really needed a fun night out in anticipation of the port.  September also brought her port placement.  UGH!!!  It was horrible to deal with her anxiety about it; she was so terrified, but she still wanted to do it.  The procedure went fabulously, but we found as we were leaving that day that her IgG counts were down.  (Immune system counts).  I knew that she would be the one to have a problem, but I hoped & prayed for the best.  My son came home from school with a $100 gift card for WalMart from an anonymous source the week of her surgery.  <3  We had Family Camp weekend at our beloved Camp Boggy Creek this month, too.  It was Rheumatic weekend, so families that weekend were all affected by arthritis in some way.  One of my favorite moms happened to look at Zach's fingers and noted that they look swollen.  To me, they look like Emily's- Dactyl.  It's a sign of arthritis.  It felt so validating to have someone else see what I saw.  It got my wheels turning, and when I saw one of our rheumatologists from our group at lunch, it occurred to me that she was there as a volunteer and it couldn't hurt to ask her to look at him, right?  She couldn't quite tell by the fingers, but she said even if there was no arthritis she could treat the psoriasis.  She asked them to schedule him with Emily one day, but we still had to get a referral.  So, I got with my pediatricians and requested a bunch of labwork in the meantime.  I'm so glad I did because I had no idea that all of the tests I requested were what they wanted us to have before he was seen!  So,

In October we finally were really hurting from Kevin's job loss.  We had our internet & cell phones off because we just simply couldn't fit them in around other expenses.  Some amazing person paid our bills.  About $400 worth!!!  We made a shout out that we could pay them back in the next week; Kevin had cashed in his 401K to get caught up, and we had only to wait for the check.  No one came forward.  God bless them!!!  We desperately needed some good by then.  We also expected to have Zach seen by our rheumy, but instead we spent 2 weeks between two different hospitals for a staph infection in Emily's port.  We were in the hospital two & 1/2 hours away on the day of his appointment.  I would have had Kevin bring him, but Kevin had just started working again!!!  I knew that when the time was right, he would find the perfect job.  I knew it because I had prayed that he would lose his previous job and find something that he would love.  We waited patiently, faithfully.  Things just fell into line, and this job does, indeed, seem perfect.  We had a tumultous month, but we got through it.  We had some truly amazing friend send things to keep Emily company or keep her busy.  One of the nurses gave her the wrong dose of one of her meds and reacted.  They thought that she had aseptic meningitis at first.  Thankfully, it was just a reaction and lasted only 2 days, but that was the worst two days ever for her.  It was terrible!!!  She celebrated Halloween in the hospital, having some of those amazing friends send her exactly the costume that she wanted.  We also had Mr. G from our elementary school call me while we were still in the hospital to ask if we needed anything done around the house.  Oh boy!!!  In truth, we had so much that needed to get done that I told him that I couldn't really think of anything.  We really had a LOT of things that had been put on the back burner. We also had a friend send us a check because God led him to.  We were able to use that to finance Christmas, which would have been pretty bitter otherwise.

In November Mr. G and one of the coaches came over to see how they could help us.  I'm really not good at accepting help, but they made me realize that this was something that a whole lot of people wanted to do, and they were all pretty excited about it.  I realized that sometimes by accepting help, you help other people.  It's a crazy, wonderful, brilliant circle.  It was so much more than "just" a little housework.  I would go too long re-describing it, but check here if you missed it.  When the time came, my street was taken over by vehicles from all of the volunteers that came out to help us.  It was overwhelming, and beautiful.  It was even more beautiful to find out how many of Emily's friends had come over and helped out!  The kids all had fun (so I've been told  :)  and it's a wonderful way to inspire them to help.  My family has all felt like a great weight has been lifted.  It was truly amazing to see someone's idea come to reality in such a grande way, though I admit I was at work for most of it!  Emily was home, the beginnings of a sinus infection hitting her.  She's still fighting it.  She's been on antibiotics since October.  She won't be off of them until the middle of January.  (Sigh)  November also brought a solid diagnosis of Psoriatic Arthritis for Zachary.  The doctor that we saw that day could feel it in his jaw.  He originally said that he'd order an MRI before he felt it; then he said there's no need- it's there.  He's been started on Methotrexate and Enbrel.  Not something I wanted to be right about, but I've known for years that he would have it.  Just knew.

And December... Our van was broken into last week.  Can't forget that.  It was frustrating, but it's just stuff. Otherwise, aside from the house being sick, and worrying that Emily would be in the hospital for Christmas, with her CT scan showing her sinuses totally blocked, it's been a wonderful month.  (Really!!!)  We've had zero time for anything.  Every day off that I've had, someone has been home sick.  BUT, she's home.  We received a card from an anonymous source, sent to the school for us.  Some wonderful, blessed stranger gave us $60.  They were touched by our story in the paper.  Our scout pack spoiled us.  Knowing what we've been through, knowing how much Kevin helps out, yet knowing that we weren't in need!!!!!!!!, they gave us an amazing care package.  Pretty much "shut up and smile".  LOL!!!  Do you see why the word "Counterbalance" runs through my head?  I see miracles.  No, not huge ones.  But I can see the little ones that people don't notice.  I catch little glimpses of how God works through us all.  And it's beautiful.

I hope that we have better health around here for 2012, but even if it's just as crazy and stormy as this year, I'm sure that we will have plenty more rainbows and plenty of blessings to balance it all out.   Happy New Year to any of you that have made it this far!!!  God bless you, and thank you for all of your love, prayers & support.  <3

*Edited a few time because I'm a dork and should have written all of these things down!  Relying on my memory= not so good!!!

Illness Update

While I told Emily Monday night that there was absolutely no way that I could stay home Tuesday, she was so miserable Tuesday morning that I caved.  Yes, I'm very worried about keeping my job, but what can I do?  She is so sick.  She functions so well, but no doubt she is still very sick.  For a girl whose temp is normally about 97F, today she was 101F in the doctor's office- and that's after being on Omnicef since Sunday.  According to my bean, it hasn't helped at all.

The weird thing is that she was fine until Saturday.  I know I wrote this in my update on Sunday, but she had a 10 day antibiotics course that ended on December 7.  I believed that this was her sinus infection coming back because she had her Remicade (immune suppressing infusion) on December 5th.  So, it's a good thing that I listened to the doctor and made an appointment for bright and early today.

Our pediatrician believes that she may have multiple infections causing this.  She added Clindamycin in addition to the Omnicef, and she ordered a sinus CT.  Our health insurance apparently needs a prior authorization before we can have it done (because a doctor's order just isn't good enough these days!), so we had no sooner time slot than Saturday.  Hopefully it will be read before Monday.  I already had an appointment for Gir made for that day; I just added Emily on to that one.  We have been at our pediatrician more in the past three weeks than I can remember at this point.

I'm still working on getting my FMLA leave to go through.  Apparently our doctor's didn't fax in Emily's stuff.  I haven't been able to get a hold of them to find out if they didn't get my fax, if it was thrown aside and forgotten, or if perhaps it needs to go to some other department.  I have no idea.  I really need to get that done.     Much as I would love to be a stay-home mom, it doesn't really fit in the budget.  Oh, how lovely it would be to not have to worry how to get a bazillion appointments done around work, how nice it would be to not have to feel guilty every time I went to work when one of the kids needed to stay home, or to not have to feel guilty for calling into work when they are very sick.  Many days it seems that, no matter what I do, by doing the "right" thing for one person, I'm ticking off somebody else.  Thank God our school understands with Emily.  I so love them.  <3

It's a little more delicate with Zach right now.  For one thing, anyone that doesn't know him likely worries that he is contagious when they see him.  He is truly a mess.  There is nothing that we can do except wait for the Enbrel and hope for the best.  Well, that's not 100% true.  I could slather him with Aquaphor all over, but he really, really hates that.  It's greasy, he sticks to everything and he's uncomfortable.  That's been the only thing that we find that works, and he begs us to not do it.  We figure, if he hates it enough that he would rather walk around feeling miserable, it must be pretty bad.  We have found a few things that help for his head.  Clobex works the best, but it's a prescription and our insurance doesn't cover it.  We would have to fail everything else first, then pay $325 per bottle for it.  No thanks.  Or there's Paul Mitchell Tea Tree Special Shampoo.  It doesn't really stop the progression of the disease, but it does help remove some of the scales.  We use a nail brush, like a mechanic would use on their hands to get the grease off.

Well, anyway, back to the school issues.  I don't have an IEP or 504 Plan for him yet, so we have to be careful of his time missed.  That would be easier if I could remember to get notes from the doctor's for him.  Today we have to take him back for his TB test results, and then we will hopefully be able to start his Enbrel.  I am currently going through an insurance nightmare with this, but I hope to get everything settled soon.  (Good thing I've been stuck home the past few days!)  I cannot wait to get his Enbrel started!!! 

Let me also say that, before Zachary developed psoriasis, I had no idea how bad it was.  I didn't understand it at all.  Psoriasis is also an autoimmune disease.  (Again, autoimmune is where the body attacks itself.) Psoriasis is it's own disease, but it can turn into Psoriatic Arthritis, which is what has happened to my son.  Psoriasis itself can really take over.  He went from having just a small patch on his ear to having his ear covered pretty quickly.  Now, years later, we marvel at how it has taken over.  It's popping up on his joints now, too.  I notice little ones trying to start all over his jaw.  It's in the folds of the knees and elbows, and the bony parts, too.  It is in his eyebrows, but it has also formed in the past on his eyelids.  He has one trying to start in the lower fold of the eye.  It itches, it burns, it doesn't feel good, and people stare.  It lowers one's self esteem.  My poor little man has been so embarrassed because of it.  Hopefully once we start the Enbrel, we will regain control of his skin issues and also head off anymore joint involvement.  I see where it's going and it scares me.  I also know that having finger involvement means that he'll likely be polyarticular (5 or more joints involved).  I'm really praying that the Enbrel is as much of a miracle for him as it was for Emily.  Yeah, what we go through is pretty crazy, but by the grace of God we get through.  As long as we have Jesus on our side, we will continue to get through with a positive attitude, knowing that He is there to lean on when we grow weary and we will be cared for.  That's enough for me.

A birthday & a new diagnosis...

It's time to change the title of the blog again!  My 9 year old is now an old ten year old lady!  I can't believe it's been ten years.  I feel blessed every day to have these kids.  Today was a good day.  She was very tired from her meds yesterday, so she stayed home today.  I ran her brother to school, ran to the grocery store to pick up her cake, ran back home, and then had to run back out to take my oldest to the doctor.  After a trip to CVS for more meds, we were back home.  She had kept telling me over the past month "I can't wait to go to therapy on my birthday!  Miss L.A. will have to wish me happy birthday!"  She was too tired to go today.  She requested pizza for dinner, so I ran back out for pizza.  We all had a nice night laughing, having a hug war, and just enjoying each other.  I also noticed tonight that her pants are falling down.  Why is this significant?  She is definitely losing a LOT of Pred pounds lately.  She's lost about 10 steroid pounds in the past couple of months.  The only way that we can tell is by looking at how her clothes hang on her.  Shirts that we bought last November that she was popping out of by the end of that month are now looking more like dresses.  I know that it's not going as quickly as she'd like, but there is true progress.

So, we had appointments yesterday.  She has done pretty well without an NSAID over the past two months.  She has had some days with a back ache, or knee pain, or a bad elbow day, but overall she's done very well.  Well enough that she didn't want to try another NSAID.  Works for me  :)  However, she did notice that she has 2 new bumps- one on each hand.  She told me that they were rheumatoid nodules. (There's a switch!  LOL!)  We remembered to ask the doctor yesterday and he confirmed it.  All of us are pretty surprised.  She hasn't had any nodules since she started Enbrel in late 2008.  They seemed to only pop up when her JA was active, and right now it's actually been pretty quiet.  Well, maybe not as quiet as we thought.  Where the past few months have showed low inflammatory markers, yesterday showed that her SED Rate  is creeping up.  The ranges for kids vary, but the range our hospital uses shows the normal range ends at 20.  Her SED was 22 yesterday.  No, not significant, not the 39 that it was last October when she was diagnosed with JDM, or the 79 that it was at one point last year, but significant enough that we'll need to keep a close eye out for more symptoms.  I really don't want to take her off of Remicade.  I don't want to have to make another change.  This combo seemed to be working so well!  I'm not going to panic.  We'll just watch for now.  He felt that her ankle was warm, and her Raynaud's is getting a little worse again, but otherwise she is doing well.

And then there's my son.  People that know me well will tell you that I have little patience for drama.  I try to be as realistic as possible.  I hope and pray for the best, but I expect the worst in a realistic fashion.  I have excellent intuition.  There are many things that I know, though I couldn't explain how or why & it probably wouldn't make sense, anyway.  I just know.  I have always known that the idea of my oldest having arthritis is preposterous.  It would make as much sense to worry about her having arthritis as it would worrying about my little people running away to join the circus.  But my son.... I've been waiting for it.  I've held my breath hoping that I would be wrong, maybe just paranoid because pretty much every ounce of my spare time has some sort of arthritis involvement.  But I knew that one day he would be diagnosed.  Yesterday was that day. 

A little background.  Em was diagnosed with JA in January 2008.  By May 2008 Zachary had developed psoriasis.  Of course, "kids don't get psoriasis" was what our first dermatologist claimed, even after we had him scratch tested for allergies and the allergist wrote a note saying it had to be psoriasis.  This guy claimed it was impetego, a fungal infection, ringworm, eczema, a yeast infection... everything but psoriasis.  We switched dermatologists after we did some reading up, and realized that it was psoriasis.  He had a classic case.  It started by taking over his ear, then it moved to his head, forehead, cheeks, chin, and eyelids and eventually everywhere.  We have never been able to gain any control over it.  Not really, anyway.  He did have a short period of time that he was mostly clear, but then it came back with a vengeance.  I'm not good at guesstimating, but if I had to, I'd say he has about 70% coverage right now.  It's bad.  It's not comfortable.  It's very visible.  It's very out of control.  Aside from the vat of oily, greasy Aquaphor, nothing helps.  So, I read.  I look for things.  I know what to look for.  From the MCTD, Emily has what they call "sclerodactyl" hands.  I have read that people with PsA get the "dactyl" hands.  Well, I took a shot in the dark and figured out that the two were probably pretty close.  I figured that Em's was different mainly because of mild scleroderma features, which is what makes her fingers look tight and shiny.  Take away the scleroderma part of that and... well, you know where I'm going with this.  Of course, right now hers still look like overstuffed grapes that are going to explode any second, but that's also from the steroid swelling.  Take that away, and I knew that his hands look dactyl.  That bothered me.  I've watched his nails turn yellow, pit, look horrible.  Those are signs of PsA.  He's had heel pain- a sign of Spondylitis, the type of arthritis most often associated with PsA.  I begged his pedi's to test him back in 2009.  Everything was negative, but I was sure it was wrong.  I was totally going to enjoy him not having any pain, but I knew that it was just a matter of time.  So, this past August when he came to tell me that his jaw hurt and was clicking, my heart stopped.  Again, I just knew.  I hoped I was wrong.  I hoped it was TMJ.  But I knew it wasn't.  Of course, Kevin was still unemployed then, so when our dentist wanted $100 for a panoramic x-ray, I wasn't thrilled.  I also knew that arthritis would likely not be picked up on a panoramic.  Generally they run MRI's.  I knew that I had to get him in to our rheumy's.  I took advantage of one of our docs volunteering at our JA Family camp.  I asked her to look at him.  She agreed that he needed to be seen.  I then set about trying to get our pedi's to run those same labs I asked for in 2009, but with an ANA and an HLA (spondy) series thrown in with a CRP & ESR/ SED rate.  Thankfully, they love us and they know that we are not trying to scam or hallucinate problems.  While not being seen as early as I wanted him to be since Emily was stuck inpatient while he was supposed to have his appointment, I finally got Zachary in yesterday.

We saw the new doctor.  He isn't really new to me; we saw him more the time that Emily was inpatient than anyone else.  We really grew to like him and his wife that week.  He was originally thinking about ordering the MRI for his jaw, but he can feel the arthritis in there.  He also said that it would be very unusual for him to NOT have something more with as much psoriasis coverage as he has.  He was intrigued by his fingers, too.  He saw the dactyl look of them right away, and noted that they are all tight.  I'm not nearly as fazed as I probably should be.  Maybe I'm just in shock, but I think it's really because I was that certain that he would one day be diagnosed.  I've had so many reasons that I've just tucked away up in a corner of my brain, waiting for more puzzle pieces to fall into place.  If anything, I'm relieved.  No, I certainly don't want him to have arthritis, but I do understand that these things are much easier to control the earlier you start trying.  I have seen kids that took so long to get diagnosed that they can't get under good disease control.  I wasn't about to let that happen.  And that is why I'm relieved.  We're just waiting on our Enbrel prescription to work its way through our insurance.  I've already picked up his Methotrexate.  He'll have his first dose on Friday night.  We're starting him easy- he'll be on the pills, mostly only because Enbrel works better with MTX.  Hopefully this will be what he needs to help his jaw and calm his skin down.  It's so bad that, when he gets up from my desk after using my computer for a while, there's dead skin all over my chair, desk and keyboard.  How can that be comfortable???   So, we keep breathing.  One day at a time...

Family Camp Was Amazing!

This past weekend we went to our local "Hole- In- The- Wall- Camp".  These are the camps that Paul Newman's product lines help to support.  These camps are amazing in so many ways.  To start, they are tailored to sick children.  These people realize that it's not fair or fun to live in pain every day, to have to spend so much time at the hospital or doctor's offices, and have to go through frequent testing.  They also realize that many of these kids are on so many meds that they couldn't go to a "regular" camp.   These types of camps are filled with counselors that volunteer- because they want to.  They are medical students, nurses, doctors.  They also have a disease-specific doctor on hand because you just never know what may happen.  It's a safe haven, filled with love.  To have a family weekend is amazing!  Emily had gone to this camp twice for a week each time.  She was so sad to leave it!  She looked forward to this opportunity to share it with us.

It's also a wonderful experience to get together with other people that are going through similar situations.  You really feel a strong sense of community.  They want the parents to do their own thing to recharge.  Many of us are happiest just watching our kids have fun  :)  I had a lovely time following my kids around, watching them excitedly make cars and animals in wood shop, checking out the boats, doing crafts, participating in the talent show, etc.  It was really cool watching Emily do all of the chants and the little cheers they had.  Like she totally belonged.  That was cool.  Another "Mom Moment" happened during the opening campfire.  One of the coolest ladies EVER, who just happens to be named Dorcas, was talking about how everyone was going to get a set of beads, but she was giving out 3 to special people.  (Mind you, I'm going deaf; I don't hear nearly as much as I want to , and since I couldn't rewind the moment, I totally missed it.)  For whatever reason, Emily was one of those 3 special people.  I didn't hear the why, and I'm not even sure how she knew exactly where Emily was, but she did.  I suppose she could have remembered her from last summer, but Em looks so different.  Any which way, it was truly amazing, and really touching.  Em also really enjoyed being in a bed right next to my bed  :)  Sleeping only 3 feet away from Mom makes her feel safe.  <3  She did have a food meltdown on the first night, but otherwise she had an amazing weekend. 

The family "Pals" are volunteers that follow the kids around.  They specialize in making the kids feel loved and happy.  They bond with the family, but especially the kids.  They have them "serve" the family, hold open doors- totally spoil the family.  We had 3 pals.  Our pal, Brittany, has Lupus.  She told us that she refused to take her Prednisone, which caused kidney failure.  She spent half of her time with us, and half in the arts and crafts area.  She has her IV port in her leg, and it keeps slipping so she has to spend most of her time in her wheelchair.  Our other pals were pushing her around. I think it was a blessing having her.  She could understand better than the other two how Emily felt.  She was a camp kid, volunteering because she loved the camp and the way it made her feel.  Our pal Jake was in school working on dual masters in business & sports.  He & Zach got along very well  :)  Our last pal was Stephanie.  She was my favorite  :)  She was only 21... close to Gir's age.  She's a medical student, working her way through college in a lab that's doing research testing for Lupus.  I was so excited to hear that!!!  She was down to Earth like a good teenager, able to fit in with the kids like she was 16.  Not only did she and Gir get along well, but she & Emily did, too.  Em schooled her in rheumatology.  I think they impressed each other.  It was lovely to meet them all, and a wonderful treat getting to know them.  Many special people make up this camp!

My last bit for the evening...  Well, we're finally on the way to getting my son "figured out".   I had noticed a while ago that his hands look puffy.  While at camp, another mom said the same thing.  (Thank you again for saying it!!!  I never would have thought to jump on it otherwise.)  After talking to Kevin about it, sitting at the dinner table, I look over and see one of our rheumatologists speaking to someone.  So I thought, hmmm, she's here in a professional capacity, volunteering her time.  It couldn't hurt to ask her to look him over, could it?  She was totally cool about it.  She said that he's hypermobile, to start with.  And she said that, judging by his reaction, she believes he has arthritis in his finger.  She didn't check his jaw, but combined with the finger, the severity of the psoriasis, the nail involvement, the heel pain, the clicking of the jaw, etc, she suggested we make a new patient appointment for him.  I had his blood drawn yesterday for labwork.  I had requested the Rheumatoid Factor panel, the inflammatory panel, the HLA-B's, (Human Leukocyte Antigen's are often positive with the spondylarthropy family), and I added an ANA.  (Is that wrong?)  Hopefully those will be back in the next few days.  Those should tell us if there's anything going on, though not necessarily.  I requested the lab send a copy to the rheumy.  That should help to get things started.  I really, really hope we're wrong.  I really want to be.  We shall see.  We're just taking it all one day at a time. 

























 

Port placement is Tuesday

As we get closer and closer to Tuesday, I find myself getting more & more nervous.  I'm sure that this port will be the answer to our prayers, but I'm still dreading the procedure.  We had a month long wait to get in to see the surgeon for the consult.  Then, her infusion was scheduled for the next week along with a doctor appointment, but they didn't have an opening for the surgery for that day, so we had to wait another 5 weeks until her next infusion.  That really figured because in August we were there every week, and in July we were up there twice.  This was the first time in a while that we had a few week break.  Unfortunately, that break allowed her anxiety to build and build.  Emily has slept in our room almost every night for the past month.  And yet, when I asked her if she wanted to cancel the procedure, she said no.  She realizes the benefits outweigh the risk.

It amazes me how strong she is.  The things that other kids couldn't handle she breezes through.  She is so logical, so hard working, so brave.  Her diseases may be hell on her, but they have helped to shape her into an amazing little girl that is wise beyond her years.  It's sad in some ways; knowing that her life is shaped around pain, for one.  She's had to make some hard choices.  I'm so proud of her.

I'm feeling very conflicted right now.  On the one hand, I'm so thrilled that port is being placed.  Especially after her last appointment where she hit and kicked the nurses for a while.  I was mortified.  I couldn't get her to stop, and they were all so sweet and patient.  It makes me angry that a surgical implant like this should be a blessing, a great thing for us.  How wrong!!!  No little kid should have to go through this, and yet she wants to do it.  She has really grown up this year.

We've been trying to think of a Christian song that talks about fear.  She told me that she wished she could find one that could help her, but my mind is over-stressed and drawing a blank.  Anyone have any suggestions?  I may still have time to download some.  Tomorrow I will have to be in bed by 8 or 9 P.M.  We have to be at the hospital at 7 A.M.  We live about 2.5 hours away.  I am sooo not looking forward to this.

On a different note, we're still working on getting my son figured out.  Our pedi wrote us a prescription to take him for a panoramic, but the radiology place by us no longer has the panoramic.  They suggest a CT scan, but I think I would prefer an MRI.  I know that's what the TMJ specialist in Birmingham suggests.  I'm going to call them tomorrow (if I remember) and see if they can either give us a different prescription or refer us to a TMJ specialist locally.  I've run into roadblocks at every turn trying to get him checked out.  Also, our pedi didn't give Kevin a prescription for labwork, but they must have read my note after Kevin left them.  I got a call a few hours later saying that I can pick up the paper copy anytime.  I had noted that, at the session in the conference, the Alabama doctor said that 83% of  JA children have arthritis in their jaw, but they don't know it.  It's painless and silent.  He also said that most children's start in their jaw, but it goes undiagnosed.  I'm still praying that we don't need to worry about that.  I've spoken with several people that have psoriasis and TMJ, so hopefully that's all it is.  Anyway, I also requested that *IF* they ordered labs, to please run the RF panel, the inflammatory panel, and the HLA-B tests.  Those point specifically to spondylarthropathies, which run with psoriatic arthritis.  Hopefully, all will be negative.  I don't need another baby in pain, though at least then maybe we could get his psoriasis under control.  It's very stubborn!

Needless to say, I'm having a rough week.  He's cool with this.  It doesn't really bother him, but I'm ticked off that I don't have any answers yet.  I hate roadblocks.  I know- I have time to be patient.  I'm working on it.  Really.  And I'm holding up.  I'm really used to this stress cycle.  When things are quiet and going well, I'm very edgy and nervous.  I think sometimes that most people don't ever have to deal with anything like this.  They can be blissfully unaware that 300,000  kids are out there suffering silently.  I miss being ignorant.  Despite all of the blessings that we've had grace our lives since Em's diagnosis, I would gladly trade it all for 3 healthy, normal children.  But then again, I bet that our house wouldn't be so happy and loving, we wouldn't count our blessings the way we do now, or try to see the bright side of everything, would we?  While it doesn't define our lives, it's certainly an integral part. Life is what you make it.

Good news for Emily, new worries for my son

We have a lot happening right now, as always.  I'll start with Emily's appointment.  Hers was actually great!  I suspected that it would be.  Minus the steroid weight that she still carries stoically around, she's feeling better than she has in a very long time.  Since we've added the Rituxan into her infusion schedule, she's now able to strap herself into her seat belt in the vehicle's by herself, she can finally roll her windows up and down in the car, and she's finally climbing stairs again!!!!!  That is huge to us.  I really hated for the kids to go back to school; I'm the weird mom that actually likes hanging out with her kids, but I knew that it would be so good for Emily.  She pushes herself at school in ways that she won't at home.  I'm so excited to talk to all of them when they get home from school, but especially to find out what physical activity she has done.  

The doctor was impressed at how far she has come on her Rituxan.  We are leaving her Remicade dosage the same, but we are able to decrease her Prednisone again!  We tried in July, but that was before the Rituxan.  The doctor did note that her left hand feels tight, but otherwise she was amazed at her energy.  She's also very happy that we have our port surgery scheduled.  Emily & I can't wait for that.  I'm so glad that Em's on board with this.  I really, truly feel like this could potentially be the best decision we've ever made for her.  Every infusion her stress level is worse.  She's great until the nurses come over with the supplies.  This time, they went & got her new favorite nurse (because she can get her on the first try usually) from the unit next door and had her waiting.  Em hates having the needle in or near her hands.  That's the first place they went.  She just freaked- shut down.  Next thing I knew, she's kicking, waving her arms around, thrashing, and screaming frantically.  The more upset a person gets, the harder the veins are to access.  They had to give her a break.  Even worse, her nurse warned her that if she didn't calm down she would have to leave because she had other patients, but Em just couldn't do it.  I think Em understood why she left, but I think she felt bad about it.  I totally agree with her needing to get back to her other patients.  She can't wait around all day- especially when it's not her unit.  I really appreciate how well the people in this facility get along.  There's a high level of support that I really appreciate seeing.  The infusion room nurses have to go through a lot.  The hours are good, but they have a lot of other screamers and harder kids.  Somehow they always seem to be a happy bunch.  It makes it so much more fun to go, because they're all crazy.  :)  For us, after the pokes are done, we can chill out.  (Often literally; it's freezing in there!!!)

Otherwise, her appointment went well.  I asked if we'll be ok to go to the family weekend at camp since it's the weekend after her port placement, and we're cleared for that.  The rest of what we spoke about wasn't actually about Emily.

I've debated on talking about this since I really don't know what's going on yet, but I decided that no matter what it turns out to be, these are the things that we have to worry about.  For anyone that wonders about the types of things that go through our heads, here ya go. 

I mentioned briefly at the end of my last post that my son had mentioned his jaw was clicking.  I swear, my heart stopped last week.  He showed me how he can pop his jaw and how it clicks and hurts.  I was dumbfounded.  When we were at the conference, we attended a session on JA & Jaw issues.  We missed the first 20+ minutes because we were speaking to another doctor in the hallway.  What we caught was that jaw issues are usually silent, and up to 81% of kids with JA have jaw involvement; the speakers says that evidence shows that the jaw may actually be the first joint affected.  My son has had psoriasis for about 3 years.  He has nail presence and other signs that lead to potential psoriatic arthritis.  Now, I'm not by any means saying that he definitely has PA.  However, when I asked our rheumy if she felt that it could be, she said that given his psoriasis and our family history, he definitely could be developing arthritis.  SO, I'm trying to get a panoramic x-ray appointment set up for him, but since we are totally broke from so many trips to Shands, I can't do that right now.  At least, not with his regular dentist.  I've emailed our hospital about it.  I figure, if it is PA he'll need to see the rheumy too, and since we're always there anyway I may as well schedule it for when we're there with Emily.  I am praying that it is just coincidence.  Not that I would want him to have TMJ, but TMJ would totally be better than deterioration from arthritis.  Not to mention, at least TMJ only affects the jaw area.  Our rheumy said that most PA is considered in the Spondylitis family- something I haven't read up on yet.  I've read up a lot on PA today, but I think we're in for a wait.  I really hope that my precious little boy doesn't have to go through this crap, too.  If he does, I'm hoping that we are catching it way earlier than most kids are diagnosed.  There are some things to be said about a heightened awareness!

And I will leave you with food for thought.  We are very blessed to have (for Emily only) Medicaid as a backup from Social Security.  There is no way that we could afford our copays without it, as I will show below.  This is a copy of our insurance explanation of benefits.  Emily has a $3500 deductible.  If we hadn't met her deductible, and if we didn't have Medicaid, I cannot imagine what our copay may have been.  We have a 20-30% copay normally.  I know that we had a balance from one bill that Medicaid wasn't covering that was over $5000.  There was another for $1200 and another for $1500.  How could any normal person afford these treatments?  Why do they have to be so expensive?  And, if arthritis is "no big deal", then why would we be paying such a high amount of money per visit???  The visits include seeing the doctor, labwork, and infusion meds.  Of course, it's the meds that are expensive.  When she was on Enbrel, we could do her shots at home and with only a $10 copay with their assist program, but without insurance they would have been $2500 per month from our pharmacy.   Someone told me once that they were charged $36,000 for an IViG.  I can't find it again, but I believe I read that Rituxan goes for $11,000 for the first 2 doses.  The rest are smaller doses, going for more like $5,500 each.  

The All Children's bills are from our therapy appointments at a specialty center.  She has occupational and physical therapy weekly.  (Her therapists are awesome!!!)  The last entry is from our pediatrician.  (LOVE her!)  I learned a few years ago that doctors charge you by your conditions.  If you are a very healthy person seeing your doc for something like a sinus infection, you will get charged MUCH less than my daughter will, even if she's being seen for the same sinus infection.  Good times, eh?