Much needed relief!!!

Finally!  We got some GOOD news today!  For one thing, Emily went back to school today!!!  Tuesday she was still so tired at Cub Scouts that I wasn't sure she would even want to go to Brownies on Thursday.  It was our Cub Scout Halloween party and she was bugging me to go home early.  Last night, however, she was talkative, and she was even trying to play a little bit.  Kevin said that she slept most of the day, so I really thought that it would be another week or two before she went back to school, but this morning she was up and trying to get ready to go!  I really wasn't convinced that she was ready to go, but she was determined.  The worst that could happen would be that Kevin would have to go pick her up early, right?  They had their "Book- O- Ween Parade" today, along with Halloween parties all day.  Of course, that's why she wanted to go today.  And she didn't come home early!  I was worried about the elevator.  Their elevator only works intermittently.  It seems that they've had the repair people out every other day & as soon as they leave it goes out again.  I think she would have been home a lot earlier if it was out!  It should be interesting to see how November goes.  Heck, it should be interesting to see how tomorrow goes!  I'm not sure how much energy she stored away, how much she pushed herself.  If she paced well she'll be ok tomorrow.  If she pushed herself then she'll probably be totally out of it tomorrow.  We shall see if she'll be able to go to school daily or maybe every other day.  Another possibility is maybe half days.  She has another doctor's appointment and infusion appointment scheduled for November 3rd.  They may or may not keep her overnight.  I am hoping that maybe they will be able to lower her steroid dosage.  It makes me so sad to see her puffing out from the steroids.  Her little belly button is almost missing.  She looks like she has a little beer belly.  :(  Her face looks so different to me.  It's funny how different she can look in such a short time.  However, as much as the damn steroids scare me, as worried as I am about the long-term effects on her, I know that they are working and doing their job well.  Her voice is getting stronger, she can stand longer, she isn't having as much pain, I think.  For all that, I am grateful.

The other bit of good news is that she has been approved for Social Security!!!  This is huge for us!!!  Since Kevin is still unemployed and the medical bills are mounting, this will help a lot.  I really just need help with medical bills.  Our copay for her Orencia infusion alone was $200.  That was just one dose.  I cannot imagine how much her hospitalization and all of the tests will cost.  We just assumed we would be paying the hospital for the rest of our lives, but I know too well that they bill everything separately.  The MRI would be one bill, the Upper GI another, the Chest X-ray another, doctor bills another...  We're already so far behind.  But what can you do?  When your child is very ill what choice do you have?  That is a huge relief for me.  I have worried, gotten hives, worried more, decided I can't worry about it.  I can't remember the last time we all went somewhere together, or bought anything that we didn't need.  This will indeed help a lot.  I still need to fax in my paycheck stubs from June to now, but at least I know we're approved!  Hopefully we won't have to worry anymore about more hospitalizations, but I know that it's a very real possibility over the next year or so.   

Facing the now

I'm not really sure where we're at right now.  The funny thing with rheumatic diseases is that you just never know what they're going to do from day to day.  We had two years of relative inactivity (Raynaud's aside).  Yesterday during the day she had more energy than she's had all month.  I guess she was so happy to be home and finally starting to feel a little better.  We truly believed that she had "bounced back".  That night at Brownie's under the flourecsent lights I could see how pale she really was, how red the circles around her eyes are.  She barely got up to play with the other kids, and instead of playing outside or talking outside after, she wanted to sit in the car.   I figured that maybe it was because by that point in the night she was tired, but would be even better today.  Well, I can't say that she's worse- she's definitely getting better slowly, but she's not where I thought she would be, either.  She and Kevin went on a quick outing today and she was so tired that she didn't even want to visit me or pick up her brother at school.  She's walking very stiffly, but at least she's walking.  She's back to bathing two or three times a day.  When she actually opens up about hurting somewhere it's the muscles she's pointing to, so at least her joint arthritis is under control.  She does say that she is still "wobbly", and she has to hold her arms out to keep her balance.  I'm just glad she CAN hold her arms out!!!  Oh, and her Raynaud's decided to flare again last night.  Since she's on Remicade now, which is similar to Enbrel I think it's going to be about how it was when she was on Enbrel.  The Orencia was great for this problem, but not so good on the Dermatomyositis, and that's a bigger problem.

I had the brilliant idea of changing pharmacies.  I have been told in the past the the big box pharmacies pop up on every street corner because they over charge for their meds.  So, I decided to try elsewhere when we were on our way home from the hospital.  I'm pretty sure this new place is just pretending to be a pharmacy.  Not only did they only carry 3 of her 8 prescriptions, but one common one they can't even get.  Her Methotrexate is something that my CVS always has in stock, no big deal.  If they don't have something they call me.  I had a hell of a day today trying to get her meds, but I still don't have her anti-inflammatory.  I had seen online the other night that her Celebrex was going to be around $75!!!  And she's been on Prednisone pills, but with the throat weakness she's having a hard time with them.  The first night she actually vomited her medicine back up.  Despite not liking it, she begged me for a liquid.  So, I called the doctor's to get a liquid steroid, and hopefully a cheaper NSAID.  (Non- Steroidal Anti Inflammatory- similar to Motrin/ Aleve).  I had to call the pharmacy three times and our insurance company to find out which would be less- Mobic or Celebrex.  CVS has always been able to tell me.  The new place said we'd have to have a prescription.  Seriously???  For a quote???  Lame.  I'm going to transfer all of them back to CVS as soon as I can.  The insurance company kept transferring me around, hung up on me once.  Frustrating!!!  I wasted a lot of time for no good reason today.  And after I finally got the right answers, I can't get her meds until Tuesday.  Heck with that!   I also found out that it's the insurance companies that set the prices- not the pharmacy.  Mobic will be a $50 copay no matter where I go.  Good to know!

I also spoke with her school nurse today.  I know I've said this before, but we are so blessed to have such a wonderful school for her.  So many people that I speak with have issues with their school.  I absolutely adore our school, and all of the helpful, caring staff.  They really do have her best interests at heart, and they do what they can.  They are working on getting her on the homebound program, and setting it up so that she can bounce back and forth on it if need be.  Plus the school nurse has connections with Florida's CMS Kids- a health insurance for medically needy.  It has a sliding scale payment plan, which will help us.  I can't even imagine what her hospitalization is going to cost.  When it comes to the school, I try very hard to keep them in the loop.  I update her teacher periodically, I email the nurse with any medication changes or anything else that needs to be updated.  I am as honest with them as I can be.  I feel that it benefits her.  I have had pamphlets sent to school to help people understand what she goes through.  I give them my blog info in case they'd like to keep up on a daily basis.  It is their right to be kept in the loop, and know what is happening.

Anyway, that is about everything going on right now.  I'll be back soon! 

So good to be home!

It is so good to be home!  I found out so many things this week, fit together so many pieces of the puzzle.  I'm completely exhausted, but my little Sweet Bean & I are home.  Praise God!  

The doctors ran many tests.  They did an upper GI to rule out reflux, check for muscle weakness & rule out systemic disease.  They did a pulminary test to check for asthma & systemic disease.  They did a chest x-ray to make sure her lungs were clear, another sign of systemic disease.  And they did the MRI.  The ran labs many, many times.  They checked blood pressure, temp & pulse oxidation many times as well.  In the end, most of the tests were perfectly wonderful!  I didn't get to sneak a peek at her labs from this stint.  I wanted to, just to see if anything changed, see what new tests they ordered.  Her blood pressure ran high the last few days, but they believe it is a result of the steroids.  She had some very strong drugs in her system.  She was also very anxious and simply didn't want to be there.  One night they had to put a second IV line in her.  She can't stand anything in her wrist.  Her hands and wrists are deeply affected by most of the diseases, if not all.  She freaked about that.  I repeatedly heard about how she wasn't strong enough, she was too young for this, too little to be there, she just wanted to go home with Daddy and her siblings.  She finally broke down a little bit one day.  I've been waiting for that.  She is so amazingly strong, mentally and physically.  How can someone so little handle so much?  I told her to ask God for strength the day of her MRI.  She told me (after being given Atavan to calm her down) that she had asked God and he told her no.  How heartbreaking!!!  So many moments that were just hellish, and yet had to be done to either help her, or help to diagnose her.

In the end, I didn't find out about the pulminology tests, but the chest X-ray was clear, the upper GI showed no reflux, meaning that there is no systemic disease, but there is some muscle weakness from the Dermatomyositis (JDM) in her throat.  The biggest test for her this time was the MRI.  After several days on a high-dosage of Salu-Medrol and Toradol (powerful NSAID) every 6 hours via her IV port, her MRI still showed muscle inflammation.  Her rash from the JDM wasn't very pronounced, but because of the Mixed Connective Tissue Disease the doctor said that it may be worse than it looks.  Generally, the rash tells how mild or severe a case, but since she has overlap syndrome and so many other conditions it may be more developed.  Piecing things together, I suspect she's had this since spring- about six months.  I remember asking Kevin at home one night what he thought about possibly Fibromyalgia.  I started collecting data on that, and thought for sure that might be it.  The JDM isn't my favorite diagnosis as she will need to be on steroids for at least six months, but there is at least a possibility that it may disappear in a year or two.  1/3 of cases resolve permanently after treatment.  We shall see.  I hope that happens, but I prefer to prepare myself for the worst.  This way I can handle the next curve ball.  I always keep hope and my faith. 

For those that don't believe in God, skip a paragraph please, or at least don't take offense!  I have noticed how God uses other people, sometimes in the mildest of ways.  When I decided that we needed a proper church to go to, I had five people in one week all talk about the church that I've always had in the back of my mind.  

This past month, the word "Shands" has come up like twenty times in different conversations.  From several it was as in "change now, go to Shands", and others it was them talking about positive experiences.  Somehow, I had never heard of Shands until meeting my awesome Facebook JA Mom Squad.  Several of them had told me how wonderful Shands was.  Thank God I listened.  If I was not the type to research, to try to understand what was happening, I would have blindly followed what the old doctor said, like a little sheep.  Had I done that, I may ended up confining my child to a life trapped in a wheelchair, not being able to even brush her hair or teeth.  That is what the other doctor said that we could expect before he dismissed us.  This is why it is so important to do your own research!!!  Advocating for yourself or your child is the single most important thing that you can do to help.  I have prevented my child from being over-dosed twice now.  How?  Because I pay attention when it comes to her.  I may be an oblivious, bumbling mess often outside of work and home, but I am very sharp when it comes to things like that.  Paying attention can save lives.  Even the best doctors will occasionally make mistakes, for they are only human.  No one can think of everything!  I am very pleased that I am on the same page with the new doctors.  They have younger children- they have an idea how we feel.  They want to do their best to help our children, and they aren't too lazy to do the right thing.  I couldn't ask for more than that. 

Now all I have to do is continue fighting for either Disability insurance for her, &/or continue badgering CMS kids.  (Medically Needy affordable state-funded insurance).  My conundrum is that we have insurance, albeit not fantastic insurance.  Our co-pays are killing us, and this hospital stint could potentially bankrupt us.  Well, I'm sure that they will accept payments, but still... on top of everything else we just don't need it.  

So, peace of mind?  Yes, we have faith that our baby will be back to her old self in no time.  She has a long road ahead of her, more therapy, home-bound schooling, and hard work, but eventually she should be herself again.  The steroids make her nice and warm so her Raynaud's isn't acting up!  That's a nice side effect.  I really don't want her on steroids long-term, but that is the only treatment, combined with the occasional IVIg infusion.  I'll keep ya'll posted about how she is doing.  It's sad; I can't believe how much my baby hurts!   Gotta have faith.......   

One more full hospital day & we're outta here!

I have been trying to update from my cell phone, which limits me to something ridiculous like 1900 characters.  That's, like, a paragraph.  Not enough!  Now I have found a community computer, but it's 1 A.M. and I should be in bed.  Soooo, I will try to fill in what I can now, & try to finish up later.


It has been an exhausting, emotional week.  Since I can't remember what the heck I have posted through the week thus far, I shall stick with the most pertinent.  So, we get to the clinic and see the doctor.  After just a few minutes she says that she would like to give her a Solu-Medrol IV and admit her so she can have 3 full doses.  Due to the response being present but not as well as desired that 3 day dosing turned into 5.  Honestly, I'm good with that.  Here's why.  After having the Solu-Medrol steroid Wednesday, Thursday & Friday and having Toradol (a very powerful anti-inflammatory) every six hours the whole time, Friday's MRI of her legs still showed muscle inflammation.  What does that tell the doctors?  Juvenile Dermatomyositis.  Derma means skin, Myo= muscle, sitis= inflammation.  JDM can be a severely disabling disease if left untreated.  Already, my little one could barely walk.  Thinking back, I'm pretty sure that she's had this at least since spring break last year.  That is when she was stuck home on the couch for a week, then ok for a couple of weeks, then bad again.  We were under the impression that her Enbrel was failing her.  That's what I thought, her rheumy thought, and I thought she thought it, too.  We uppded her dosing and things seemed to improve, but not enough.  The JDM really reared its ugly head when we stopped the Enbrel and moved to Orencia.  Apparently, JDM will respond to some TNF blockers.  Orencia is not a TNF blocker, which is probably why it got worse when she switched.   


The MRI was very necessary to diagnose, but it was terrible!!!  It was supposed to happen Wednesday night or Thursday morning, so I started to prepare her for it.  Usually she's ok as long as I explain things.  Not this time!  The more time that passed the more upset she got- and it didn't happen until around 3 P.M. on Friday!!!  By that time she had decided that the MRI was going to kill her.  She got all worked up.  She kept repeating things like "I don't want to die!", "I want my Daddy!", etc...  They had given her Atavan which seemed to decrease her movement but increase her anxieties.  When she was finally done, having screamed through the entire thing, she didn't really stop for a while.  They had tied her feet together, & she was sobbing "Oh, great.  Now I can't walk!"  Sooooooo horrible. 


Pretty much her whole stay she has been on Toradol continuously, Salumedrol once daily, the IVIg yesterday, and she started Remicade this evening.  I read up on IVIg.  I don't currently have the site to link to, but that is AMAZING stuff!  They take the antibodies out of the blood of 20,000 donors for each treatment.  The thought is that it confuses the bodies of those that have autoimmune issues.  Great stuff!  Of course, introducing another new thing to a child that has had curve balls thrown at them constantly isn't the easiest thing to do.  She freaked out about that, too.  Really, she is sad, depressed, still feeling crappy, pumped full of steroids & other drugs, missing her family and bored to tears.  Can I blame her?  Absolutely not. 


I learned something.  Remember how I was sure that she had Lupus?  Well, in a way she does.  But only because the definition of Mixed Connective Tissue Disease is Lupus.  She has no Lupus symptoms, so no technical Lupus.  The other good side to that is when one has MCTD it means that (arthritis aside) one won't have any other one disease in the spectrum full-blown; there will be little bits of every disease represented.  That helped to make it easier.  Thank God we switched to here.  They think like me, they both have little kids, they CARE!!!  I'm so glad that we're here, already seeing a difference in my girl's hands and eyes, seeing her with a little energy today.  We've been warned that we may have to school her at home for a while.  We will see how she is when she gets home.  I don't want to decide on anything until I see her away from here. 


I know that she'll be going home on steroids.  She will have at least a month, but that's because if there is active rash, there will be active JDM.  The trick is to knock it back and then you have a shot of losing it completely.  1/3 of the cases lose it entirely.  1/3 have an on/off relationship forever, and the other 1/3 has more remission than flares.  If I were at home I'd find the website & link it.  I will try soon.  It is extremely rare.  In general for adult & pediatric cases only 1 out of 100,000 have JDM.  Leave it to us!  Anyway, back on the steroid note, her blood pressure has been high all day.  I saw it at 148/100 but apparently it was even higher at one point, like 154/?  The nurse that told me that didn't have the chart in her hands, but that's what she remembered.  WOW.  So, she's getting a dose of Lasix (not sure of the spelling).  It's actually a diuretic used to help bring down blood pressure by helping the body to flush itself.  Great idea!  It's mild & natural.  She's been crashed for a while.  They give Tylenol, Benadryl, & Corticosteroid before the Remicade.  Drugs to counter the drugs.  What a sad life for my little baby  :(  I am confident that these docs will help her.  And because of that, I am not a wreck.  I was a total wreck the last ten days before I came here, knowing what needed to be done but not having a doc that would do anything about it.  It's inaction that kills me.  If we're working on it, I can be patient forever.  To do nothing kills me!  I have to have something in the works, be working towards fixing her or towards a goal.  I can't let a problem grow and do nothing.  She feels like a pin cushion, and she can't appreciate this right now, but I have faith that she will.  Ok, I have to crash.  Lord knows, I'm sure she'll be up peeing soon.  I will try to update more tomorrow!








 

So, here we are...

Have you ever known that something was wrong and been totally blown off? I'm assuming most do, & therefore know how frustrating, helpless & upset it makes you feel. It can make you feel like things are spinning out of control fast! That has been my last ten days. She would get better, then worse, then better. Just when we thought the fever was gone it would come back. There is so much I want to say, but my phone only takes so much text.
I have faith that this is where we are supposed to be & she is in good hands. At first we were told they want to keep her here at the hospital for 3 days. They are debating on 5 now so she gets more solumedrol. I still don't have any answers but that's ok because at least they are trying to pin down what's wrong!!! I have always been the type that wants to know what we're up against & we'll deal from there. I can then research the heck out of it and figure it all out. As terrifying as it was for us both & as much as we miss the family I know we're on the right path!

Today's infusion went so well!

It is a relief, but also a little sad, when your child barely even flinches when the needles come out.  Em didn't even shed a tear today for her infusion!  We were so proud.  I never thought I would see this day come.  The nurses ask things like "Any weakness?"  We explained that there was a new diagnosis, though it's not like there have been ANY tests to prove & make 100% sure that she has dermatomyositis.  The nurse then asks what we were doing about it.  She was also shocked when we said that our doc ordered no tests, passed us off to her pedi & refused to treat it.  Today her eyelids looked normal, but we could see a bit of the rash on her hands now.  It is getting harder for her to brush her hair; the muscle weakness seems to be coming out.  In general, she's very tired today but she's feeling much, much better.  It's so nice to see her walking and moving around the house again.  By tomorrow she should be running in circles again.  Boy, that is so wonderful to think about.  It's been a long week.  I can't wait until Wednesday to see what the new doctor's say, & if they will find out some of these diagnosis for certain.  I'd like to have the scientific proof that there are really so many diseases and it's not just one.  In some ways I suppose it doesn't matter so much, but it matters to me.

I have had so many people reassure us that we're doing the right thing by switching rheumy's.  These children have some amazing and wonderful parents!  It's so nice, the level of support that we have through each other.  I wish that I had found these people around August 2007 when we made our first rheumy appointment.  We couldn't get in until January 2008.  I felt alone, like no one could understand.  When you say your child has arthritis, often people say things like, "Well, at least it's nothing serious!"  Yeah, ok.   Just because Emily has arthritis doesn't mean that it's less serious than other things.  Thankfully, she doesn't have the systemic type which, if not properly treated, can be terminal.  People often forget that this disease means that she will have it for the rest of her life.  That means that there may be many, many weeks through her life that she is wheelchair or couch bound.  She will live her life being in pain every day.  Yeah, that's nothing serious.  (As long as it's not your child or yourself, anyway.)    This is her life- filled with doctor visits, being poked with needles, and having a bunch of medications to take every day.  Not knowing if she'll be able to get through today or walk tomorrow.


I follow several blogs.  One blog is http://community.arthritis.org/jiamoms#  I read her last post last night.  Her 12 year old is having her second hip replacement next month.  How sad!!!  Harder yet is that her little one told her that it's time to go visit the surgeon again, time to do the other hip.    These children are wise; they know things that a lot of adults couldn't know, or handle knowing.  They are little heroes.

Another little hero is a girl that I met at our JA Conference.  I honestly thought she was younger than she is, but the children with health issues tend to be smaller.  She has her own awareness page on Facebook, and she is making awareness videos.  So many kids try to turn away from their diagnosis, try to stay "normal" instead of embracing their differences and educating people about them.  This one breaks the mold by telling everyone that she meets what she is up against.  (My little one will tell people about her arthritis, and what meds she's on, but so far that's it.  She's a few years younger than Mia, though.)  I learned a few things from this.  As I've said before, I truly believe that my child has Lupus, but her actual diagnoses are everything else that this girl lists.  So far, Em is only on Orencia & Motrin.  Mia is on a LOT of other meds to try to keep control.  So is every other child that I've heard of with the same issues.  (Another sign that it's time to move on!)  http://www.youtube.com/watch?v=Bl9x5BBO76M  She is very matter-of-fact.  We need more people like this rooting for our kids!

The last thing to note is that 2 of our "Arthritis Families" here in my state did a ride to benefit our Camp Boggy Creek!  That is the camp that Emily attended twice now because the Arthritis Foundation also helps them.  The have medical staff on duty at all times, and can even do lab work on their grounds.  Doctor's and nurses volunteer their time to help these needy children.  There were a ton of bikers that rode to support them.  I am so thankful!!!  Thank you, Heidi & Tiffany, for riding for our children!  That is sooo cool!!!

Wednesday we see the new rheumy!

The more time that I have to think about the inaction of our current rheumy, the angrier I become.  I am one of those people that does not like change. I try to give people many chances, & always believe that they have the best of intentions. It takes a LOT for me to get truly angry- angry enough to take action. Once I have reached that point, however, there is no usually going back. After reading how the treatment for her new diagnosis was exactly what I asked for (& was denied), I looked to Facebook to try to find a discussion on the matter. One reason that I love FB so much is because in a situation like ours, it gives you a way to connect, share info,  & learn from others. If you're very lucky you may have the opportunity to teach, help others or simply share or exchange info. To me, that is huge. 

In my search, I found a mom on Facebook whose daughter had been diagnosed with Juvenile Dermatomyositis about four years ago. She had a page going to raise awareness for JDM, & to help fund raise so that they can better care for their little girl.   I had noticed that they are in our state, but they were seeing a specialist in Chicago.  My thought was pretty much "Dear God, what have we gotten into???"   She had also linked to the page that I had found about the treatments used, & for whatever reason I thought that was her page, too.  That page had actually changed a lot for me;  it was there that I realized that I needed to make a change and it gave me the courage to do it.  So, I sent her a message via FB.  I told her our plight and mentioned that the page made me realize I needed a new rheumy for our little one.  She sent me a message within 24 hours asking me to call her.  (This is why I love Facebook.  Where else can you so easily find people who *KNOW*?) 

The first question that she asked me was who our rheumy was.   When I told her, she says "I knew it!  I knew that it had to be!"  She then told me her daughter's story.  (Note that I usually mess up the details, so I may be remembering wrong on a detail or two, but the overall story is as told to me!)  They had started out with our doc.  He wasn't going to give them anything.  Finally, he agreed on oral prednisone.  It wasn't being absorbed into her body.  You see, with steroid use the user develops a "moon face".  Their physical characteristics are changed after using for more than a week or two, and generally go back to normal at some point after it is discontinued.  She wasn't gaining weight, she wasn't getting the moon face, but he wouldn't see it.  Mom had started to research and asked about Solumedrol.  Apparently, he doesn't believe in it.  He says that he feels uncomfortable with it.  Her skin had literally started breaking down, opening up.  She called him, panicked, and asked him what to do about it.  His suggestion?  Solumedrol?  No.  More powerful steroids?  No.  Balmex.  Seriously, Balmex.  Needless to say, she was thinking wth?, but didn't quite know what to say.  It was at that point that she realized that they needed a serious change.  Her daughter had gone from a wonderfully healthy, happy little girl that was very active in sports and was a model to a wheelchair bound mess.  Until she discovered her doctors in Chicago, that is.  She started fundraising in order to try to raise enough money to go.  At first they were going every six weeks!  She had the most advanced skin breakdown they had ever seen in Chicago.  (I shudder when I think of that.  That could have been us in the future.)  How is she now?  She's walking, once again able to brush her hair and teeth by herself.  They're weaning her off of the steroids, & she's active once again.  Thank you, Krissy, for sharing your story and your time with me.  You made it perfectly clear that my decision to fire him is the right one.  I am grateful to you for that!  Same to you, Julie!  I know, you tried to tell me first, but I am stubborn!

So, my pedi faxed stuff to the new rheumy's and I faxed the labs that showed her positive ANA (auto nuclear antibodies), along with a little note!  :)  I anxiously awaited a call from them.  Two days went by as I waited and worried.  I didn't want to rush anyone though.  I had been told that this doctor liked to look through the charts for each patient before accepting them.  I knew that she could help us, and I was not disappointed.  I got the call Friday while I was at work.  It wasn't just that Em was accepted.  The person calling said "Dr. E believes that she can help Emily."  It's not just "bring her in", or just scheduling yet another patient.  That statement gives the impression that they care about their patients.  That is all I can ask for.  When you find a doctor that cares, generally that means they are good at what they do and they have your best interest at heart.  Sometimes it's hard to tell.  Sometimes they seem to but don't really, or it's just a job. 

I know that with these doctors, they believe in treating when appropriate.  That has also become more important to me now than I ever thought it would.  I had always assumed that the doctors would treat as needed.   I spent quite some time asking about Calcium Channel Blockers for Em's Raynaud's.  I'm sorry, & maybe I'm crazy, but to me getting frostbite in school is not acceptable!!!  My child not being able to walk for a week is also not acceptable!!!  I don't want a billion meds just to shove stuff at her, but I don't think that I should be expected to just sit back and watch her take 20 minutes to shuffle to the bathroom because it's all that she can do, or accept that I can't hold her because it causes too much pain.  I shouldn't be ok with her not being able to wear shorts in Florida in the summertime (when everyone else is dying of the heat), or that she can't go swimming without turning completely purple in the summer.  I am not settling.  I have asked, I have suggested, I have requested.  I have asked 2 other doctors at the JA Conference, and they both agreed that they would be treating the Raynaud's.  It's not cool that he's not treating the scleroderma because she can't use Methotrexate.  My child is likely the only kid in the world that wants her MTX injections.  Why?  Because she's itchy all of the time.  I know she can't take it because of her white cell count, but it's not the only drug out there used for it.  However, apparently when a patient doesn't respond the way that they are supposed to, some people can't think their way around it.  That said, I can't wait until Wednesday!!!!!

Today she's doing pretty well!  She had a fever for 5 days but it's finally gone.  Her pedi only calls when there's a problem with the labs and she hasn't called yet, so I'm thinking that the strep culture was negative.  (Unless she just faxed all of the results to the new doc figuring that it's partially their responsibility and we are going there...)  In fact, reading up on things, it looks like the JDM seems to cause fevers from the start so I'm betting that was it, if that's what is really going on.  In my heart, I still believe that instead of it being all sorts of overlap conditions it will finally be called one thing- Lupus.  According to the latest edition of Arthritis Today,  Lupus is one of the most commonly misdiagnosed diseases, and can present as all of the diseases that she has been diagnosed with.  http://www.arthritistoday.org/daily-living/relationships/you-and-your-doctor/rheumatic-diseases-misdiagnosed.php?WT.mc_id=52diseases  "

• LUPUS

What it is: A disease in which the body attacks its own joints, skin, tendons and vital organs. Lupus is episodic, meaning that symptoms will flare and then disappear. Doctors have dubbed lupus “The Great Imitator” because of its ability to look like so many other diseases.

Mistaken for: RA, scleroderma, rosacea, multiple sclerosis, Lyme disease, depression, vasculitis, myositis (inflammation of muscle tissue), endocarditis (inflammation of the sac around the heart), fibromyalgia, meningitis"

So, we shall see.   She's walking around again, and mostly pain-free, despite one mouth sore.  (That's a symptom of JDM).  Praise God!  Last week was a very hard week.  Let's hope that this new week gets easier...  Tomorrow is infusion #3!

 

Our pediatrician ROCKS!

My oldest daughter was around 2 or 3 when we first found our pediatrician.  She's now 16.  Our pedi is so sweet, so kind, caring & compassionate.  I have always felt that she truly looks out for us.  When our rheumy blew us off the other day we made an appointment for this morning with our pedi.  The rheumy had wanted us to go to her for a strep culture.  I hate getting angry- I always feel like it's irrational even when I know it isn't, so it was wonderful to me that she got angry when Kevin told her the story of the past week.  When he mentioned changing doctors, her response was "Let me call them for you.  You shouldn't have to go through that."  (Did I mention that I love her?)  This lady is so cool that after my kids stop seeing her I would love to become friends, hang out together.  She is also a fantastic doctor.  So, that made me feel so much better that she was angry over the whole situation.  She hit the nail on the head by asking Kevin why he didn't just order the culture since his office is in the hospital & we were right there!!!  She doubts that Em has strep, but she ordered the culture & more labs to go with the it.  Just a CBC, CMP & SED (Erythro Sediment Rate- that measures inflammation in the body).  Had I known I would have asked her to throw in a couple more.  I'd love to have her Rheumatoid Factor re-checked since I've heard that true RF means having a positive result twice, but also it would be good to re-test for Epstein-Barr.  I found this article on a Facebook page simply called Dermatomyositis:  http://www.facebook.com/#!/pages/Dermatomyositis/103112109729074  " 

Causes

The cause is unknown, but it may result from either a viral infection or an autoimmune reaction. In the latter case it is a systemic autoimmune disease. Many people diagnosed with dermatomyositis were previously diagnosed with infectious mononucleosis and Epstein-Barr virus. Some cases of dermatomyositis actually "overlap" (are combined with) other autoimmune diseases such as: Sjögren's syndrome, lupus, scleroderma, or vasculitis. Because of the link between dermatomyositis and autoimmune disease, doctors and patients suspecting dermatomyositis may find it helpful to run an ANA - antinuclear antibody - test, which in cases of a lupus-like nature may be positive (usually from 1:160 to 1:640, with normal ranges at 1:40 and below)."

I have noticed that her fevers seem to only be upon waking and before going to bed.  We're going to keep a closer eye on them to see if we can establish a pattern.  I had asked our rheumy if it was possible that she could be just now showing signs of systemic disease in any category & he said no.  Then again, he also got ticked off when I asked him wouldn't the scleroderma spread without treatment?  Some days I feel like maybe I know too much, other days like I don't know enough, but some days it's a mixture.  Yeah, he got all defensive with me about that question but I have read that damage cannot be reversed.  That said, wouldn't it make sense to prevent damage?  One would assume...

We should find out the lab results sometime tomorrow, and hopefully figure out what the heck is going on.  She is feeling better today!!!  She's still very pale and tired, still hurting a bit in her elbow but her knee is feeling better!  I had gotten used to her walking so slowly & carefully again, but when I got home today she walked past me normally.  I almost dropped my drink.  Talk about exciting!!!  She still has the fever, though, so no school.  It should be interesting to see what tomorrow holds.  I'll keep ya'll posted!

 

So angry!!!

When Kevin pointed out the Emily felt warm on Sunday night I was surprised.  Because Enbrel & Methotrexate both mask fevers, I had gotten used to her not having them.  Since Orencia does basically the same job as Enbrel but in a different way I wondered if it, too, would mask fevers.  I know now that it does not.  Because she was flaring so badly- by then completely couch-bound, getting up only to use the restroom- I kind of hoped that maybe it was just from the flare.  She doesn't seem sick, but then again, she never does.  So, instead of rushing her to the children's hospital last night after the forehead probe flashed 104.4F at me, I decided to wait until today to figure out what to do.  It responded to Motrin and was back down fairly quickly, and she seemed very stable.  I figured there was no point in waking up our rheumy when they would just be using her as a pin cushion, anyway. 

As soon as we got up today I called her pediatrician.  Their computer system was down, but when I explained what was wrong, the med assistant says "I can't even see what's on the schedule so can you come in now?"  Sure!  My thought was to rule out infection so her rheumy couldn't blow us off, and also to get our pedi to call him since he won't return anyone else's phone calls. I got the newer, more conservative doctor.  She is still learning, but she's okay.  She's one that only likes to prescribe oral steroids yearly or upon dying.  I can understand that.  They are harsh, can cause brittle bones, can mess up internal organs, make a child gain a ton of weight.  Even she agreed that she would give steroids to my bean.  She said that she couldn't see any infection, though it was possible that there was something viral.  She had a viral infection the week before we met the Congressman, which was Sept. 13.  Anyway, she called our rheumy and he actually talked to her!!!  I was shocked.  He wouldn't even call back the nurses on the same floor as his practice last week, and we were there for 2 hours.  Anyway, he wanted to see her, so we made a 1PM appointment.  Somewhere something got lost in the translation because somehow I was under the impression that we were going to the Infusion Room.  That would mean IV Solumedrol, which would be a wonderful choice at controlling the inflammation.

I should have known better.  He did a thorough exam and could definitely see the inflammation, but decided that she probably had strep that just couldn't be seen yet.  The new nurse practitioner (who was an infectious disease nurse) asked me what lab we use, but then he popped up with "I want her to see her pedi on Wednesday for a throat culture to check for strep."  Okay.  Hmmm.  It gets better.  During her exam he noted that her eyelids were really pink.  He also noted a spot that she's had on her elbow that I always think is an RA nodule.  It has gotten bigger.  Those 2 combined with different areas that were causing her pain, and then looking at her labs he determined that she most likely has Juvenile Dermatomyositis.  (Why not, right?)  I had heard of it, but I hadn't read up on it before because it didn't apply.  Now that I've read up it makes sense.  I had been wondering if there was a muscle issue going on because often she would point to non-joint areas and say they hurt.  The symptoms?  Weak muscles, fatigue/ lack of endurance, stomach issues, weak voice... a whole list that just makes sense.  I'm not sure what it was in her labs since by this time my head was spinning, but at some point he & the NP decided that there was *something* in her labs "that's not good".  Judging by the context I assume it was myositis related, but I'm not 100% for sure.  They also said that this can be why her white cells keep crashing.  They are still too low to go back on her MTX.  And finally, they mentioned an MRI, but I don't remember if it was the elbow, the knees (where she has flexion contractures) or where.

So, after he left the room I realized that we hadn't settled on anything to help her MOVE.  We called him back & I asked him about a round of steroids.  I don't want to give my baby narcotics, though I do have a bottle of Tylenol with Codeine in it from Zach's arm break.  I would rather give her something that will control the inflammation.  Nope.  "I really think it's from the strep, and after she's on antibiotics she'll feel better."  Okay, I had pointed out before that after 9 days her Orencia vanished from her system and left her like this, and since this dosage was half the first it would make sense that it would wear that much more quickly.  He was totally focused on strep.  I was ticked off that nothing would be done for the pain, but what could I do, right?  Sometimes it takes me a while to get really angry.

So, I get home & start reading different things, talking to people.  I have a friend that was telling me how when her son with JA got strep, it was in his eyes, & it can cause full-blown inflammation.  Her rheumy & pedi worked together to treat it, using a month long course of alternating antibiotics, IV & oral steroids.  My jaw probably dropped when I read that, thinking wow, we got brushed off.  But then I read this: http://www.curejm.com/info/jm.htm , which is info on the myositis.  I about lost it when I got to the treatment section.  "
What is the treatment for JM?
There is no cure for JM yet, but there are treatment options to help manage the symptoms. Early and aggressive treatment is usually the best predictor of a better outcome of this disease.

IV corticosteroids (Solumedrol) are usually the first line of treatment for JM. This is oftentimes coupled with high dose oral Prednisone, another corticosteroid. Since the side effects of corticosteroids can be very troublesome, Methotrexate (a chemotherapy drug when given in higher doses) is usually introduced early to allow for tapering of the corticosteroids.

Other common treatments include Cyclosporine and Intravenous Immunoglobulin (IVIG). Less common treatments, but still used include Cellcept (chemotherapy), Enbrel and Remicade.

These medications all have their own side effects, but the most common ones for Prednisone are: -increased appetite and weight gain -rounded face -mood changes -high blood pressure -stretch marks -fragile bones and bone damage -cataracts -slow growth." 

Can you feel the anger?  Really?  So, despite really not looking forward to the drive, I am finally angry enough to have decided to try a rheumy 3 hours away.  Why?  They are the next closest ones.  Pediatric rheumy's are a rare breed!  One doesn't have many choices!  Maybe then we will have proper treatment, we will not be brushed off, we will have phone calls returned when you tell them your child cannot get out of bed, and her issues will actually be addressed.  I really didn't want to switch.  As a person, I really like her doc.  I absolutely adore the nurses!  They are so sweet, such good people.  You can tell they really care, and they are genuine.  All 3 of them.  But I can't let her live like this, either.  She has:  RF+ (adult type) Juvenile Rheumatoid Arthritis, Scleroderma (linear- skin only, they say), Raynaud's Phenomenon, Myositis, & Mixed Connective Tissue Disease.  The only thing being treated atm is the arthritis... kind of.  I pushed for calcium channel blockers for the Raynaud's so she wouldn't get frostbite in school again and was denied.  There are other meds aside from MTX that can be used for Scleroderma, but not for us.  And now it's just deal with the pain???

My head is still spinning.  It's been a long day with a lot to absorb, and I'm still angry, but I have to be up soon.  I think I'm too angry to sleep, but I guess I'll have to try. 

And the roller coaster rolls on

Well, once I found out that the Orencia dosage was cut in half for her second infusion, I wondered what was going to happen.  I doubted that she would feel as well the second day, and I doubted that she would feel as well for as long.  Instead, the day after she did fabulously after the morning, but now that we're on day 5 she's reverting.  It actually started last night.  She told me that her back was hurting, then it was fine, then it started again.  She kept telling me that this hurt, or that hurt, but it was mostly just quick pains that went away in a few minutes.  I hoped for the best, but suspected the flare was coming because I also noticed what look like new nodules popping up on her hands.

Today after I got home from work I found that she wasn't doing so well. Not only does her back hurt pretty badly but now her neck hurts, her shoulders, her arm, both legs and a finger.  That's all that she has admitted to, anyway.  A little before it was time for her next round of Motrin we kept hearing little moans coming from her.  She's trying not to get up from the couch at all unless she has to.  Because that alone apparently isn't bad enough, her Raynaud's is acting up again even inside of our house.  Usually she doesn't have too many episodes at home.  I had to grab her blankie, & her housecoat and Kevin grabbed her mittens for her.  She stayed bundled up for quite some time.  It's so frustrating to see her good for a few days, then very bad for a few.  I knew to expect it, but still...  Once it fully kicks in in another couple of months it should be worth every minute, but right now it's just very hard for her to deal with and for us to watch.  We may have to keep her out of school this week.  We shall see.  One day at a time.  We'll just have to see what Monday brings.