Rheumy visit & overnight stay

Well, I feel as though we’re on the right path.  Today we set out early to bring Zachary to school and head to the hospital for Emily’s infusions and doctor appointment.   On our way up the ENT’s called twice to see how Em was doing from yesterday’s procedure.  I asked them to please send copies of everything up here.  Last I knew, that hadn’t happened yet, but I have them working on it here now, too.

I was really hoping that we would see the main doctor today.  I thought it was time to get the many years of experience in to see her.  I was so happy that Dr. E was here today!  She seems so much more relaxed since the new doc was added to her practice.  We went through the whole story again, discussing cultures and the new jaw pain.  As the ENT said that he didn’t think it was from his side, our rheumy thinks that it is.  She played with the jaw a bit and she doesn’t feel any problems with the joints in her jaw.  But she didn’t like the whole “wait to see if there’s an infection” idea, either.  While we’re here, she figured that she would prescribe ROCEPHIN just to be on the safe side.  If the ENT’s had faxed over the sensitivities from last culture we would have a better idea, but it is what it is.  I have to try to remember that these “extra” doctors don’t care the same way, or realize how huge a deal Emily’s conditions and immune suppression are.  I’m happy to have her on an antibiotic.  While I realize that she can’t stay on one forever, I truly believe that she needs one now.

We discussed things like NSAID’s, and how she hasn’t been on one for quite some time.  She’s feeling yucky enough to want to try her hand at Mobic again.  So Dr. E put in a new prescription for Mobic, and they gave her some Singulair here.  We talked about her Methotrexate.  Because Emily gets so itchy and MTX is the only thing that seems to touch it, she is probably the only kid that wants her MTX.  We decided to wait a week or two and then try it at a lower dose.  If she doesn’t get worse after two weeks then we can try her normal dose again.  We were also given the ok to go down on her Prednisone!!!  WOOT!!!  I have been wanting to ask for this, but I know there’s a schedule…  At the moment she’s been on 1.5mls (4.5 mgs).  We are going to go down to 1.25ml for a week, then down to 1ml!  That is huge!!!  I will definitely take 3mgs to 4.5mgs any day.  I was very, very happy about this. And they're going to look into helping us get a hospital bed for her because she has a hard time getting up and she likes to sleep in an almost sitting position.

Tonight’s IViG to boost her immune system was started late so we’ll probably be here until 2-3 tomorrow, but the longer the better.  They are also using a higher dose than they had originally planned to give her a boost.  I’m happy with that.  So is she.  Emily had actually asked me if she could do IViG.  She is so tired of being sick, and I am so tired of worrying about the “what if’s” of her being sick.

While we were in the infusion room we had a med student come talk to us.  She is doing a paper for school about communication between doctors and parents.  I was pretty excited about this, actually.  There are so many things that they don’t teach in medical school that would be a tremendous benefit to doctors.   I think that, like parents, the doctors get conditioned to thinking of little things like surgery as just that- a little thing.  I was thinking about how when we first met our ENT’s with Gir’s ear infections and later with Emily’s adenoidectomy, he so casually declared that she was going to need surgery, have a nice day.  At the time I was devastated.  Now… sometimes surgeries are welcome.  If it helps to change the problem, if it’s the only way… then ok.  But as a parent just thrown into this world, you’re totally overwhelmed.  So we talked about that, relationships with medical personnel, how Em’s diseases have affected us if different ways, and so on.  It was nice, actually.  I had planned on just chillin’ out, catching up on Facebook and maybe mindlessly clicking on some game things.  Real conversation was much better. 

So it was a strange day filled with ups and downs.  I’m so glad that we’re here tonight.  As crazy as that sounds, my hope is that the ENT will call with culture results tomorrow and we’ll have been able to have a plan in place with Dr. E before we leave.  That would rock!  For now, I’m so exhausted that I don’t even really remember what I wrote and re-reading isn’t helping, so I think I’m going to mindlessly click some stuff and head to bed.  I want to thank those of you that are praying for us through this time.  I appreciate every single prayer.  Thank you!

Frustrated

While I try very, very hard to remain positive 99% of the time, I am far from immune to rough weeks.  This has been one of them.  This week I find myself simply discouraged.  For once,  I look around and see more negative than positive.  I hate that.  I am trying very hard to build myself back up, but it's not been easy.

I had spoken to our ENT's office twice last week.  First because Em was more stuffy than she was after the first week on antibiotics.  Granted, she didn't have a fever, but that is pretty normal for her.  She had been draining a LOT still- more than I though was normal.  They told me to just keep using saline.  I was having a hard time expressing myself with this.  I couldn't prove that she was sick, but sure seemed to be doing about what she was when she was sick.  When they called to confirm our appointment I brought it up again.  I didn't think that she could wait until today, but she did!

Friday morning I had a very hard time getting her up.  She was struggling, teary-eyed, and not very with it.  She was coughing.  A lot.  And, just when it was time to leave, my son yells to me, "MOM!  Emily is vomiting mucus".  Woot!  She spent about ten minutes vomiting.  This is seriously just not fair to her, and it's breaking my heart.  All that she wants is to get better.  She agreed to the surgery because it is supposed to help.

Today we went back for stage II of the surgery.  By this point her eyes are all bloodshot, around her eyes is bright red, she has what looks like a popped blood vessel- all from coughing.  She sounds all junky, and she's still very sniffly.  I knew that they wouldn't declare her "fixed".  I wasn't expecting more non-answers.  (Not their fault- they want scientific evidence.)  They did a culture to make sure that there is no lingering infection.  They told me today that, while she is still congested, she's not really junked-up in the sinus cavities.  The inside of her nose is still very inflamed.  He said that usually this type on inflammation is more of a systemic reaction, often from other problems like reflux.  Well, I can rule reflux out since she's on an adult dose of Prilosec as it is. 

I had pretty much figured that I would be calling her rheumatologists shortly after our appointment, but I wasn't really expecting to tell them that this may be arthritis-related.  So, I called them to tell them about the nasal inflammation, beg them for IViG (to help boost her immune system) and also to tell them about her brand new jaw pain.  I was really, really hoping this would be the result of blocked sinuses or another infection.   The ENT checked her ears, analyzed the sinus drainage, felt her jaw, and determined that this isn't his department.  Her lymph nodes are swollen, too.    Fortunately, her rheumie's office called me back tonight.  We are staying at the hospital tomorrow night for her IViG.  She didn't technically have an appointment scheduled to see the doctor, but they are going to look at her given how much is going wrong right now.  For that I am very grateful.  I just feel so helpless right now.  One thing that people don't understand is how great the risk of infection is for these kids.  She is at a much higher risk of dying from a silly little infection that healthy people can shake off without a thought.  Another reason why we strive to gain awareness: this is much more serious than people often realize, and it can be very deadly.

So, currently I am frustrated with this stupid sinus infection that is really messing with her.  I am frustrated that I don't have a medical degree so that doctor's that don't really know me will listen to me.  And I am frustrated that I can't keep her home on days like Friday when she really needs to be home, away from kids that are germy and sent to school anyway.  It makes me feel so terrible for her!  I also feel that perhaps both of my kids would be doing better in school if I could home school them.  We are working on it.  I know that things will work out.  I just would like that to happen now, please!!!

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.

Little update

It's been a good week so far :)  Zachary seems to be recovering now from his sinus infection.  We withheld his immune suppressors this past week until the end of antibiotics.  We started them again on Friday.  It was another one of those decisions that is risky either way you go.  It's either hold off on his arthritis meds and let the infection clear but risk more disease progression or it's letting the infection linger.  I don't think I could handle him also having a 3-4 month sinus infection.  I don't want him to go through what his sister just went through.  My biggest concern at the moment is his hands.  Kevin and I noticed that his hands look weirder now.  Almost like the tops are all swollen but with a new little nodule-like things on the knuckle under each pointer finger.  Kevin pointed out that Emily's nodules were hard so they may not be, but I remember hers being squishy.  Then again, I've been wrong on a lot of things lately, so who's to say?  I guess we'll find out at his next appointment in April (I think) if they are still there.

Well, so far Emily is actually doing pretty well!  Yesterday marked her first day off of antibiotics and so far she's doing ok.  Now we'll just hold our breath for a couple of days...  Hopefully this sinus scraping did the trick.  She sees the ENT in 2 weeks, just before going for her next round of medicines.  I don't think that her pediatricians realize quite how many immune suppressors she is on, and what they do to her immune system.  She was able to do a little work yesterday with her homebound teacher, and today she was able to spend the whole day at our local science museum for an Arthritis Foundation event. 

We LOVE events like this.  Not just because we are spending the day at a science museum, but also because we get to spend time with people that understand our world.  It is like going home when we meet our arthritis families.  I get so overwhelmed when there are many of us :)  We never have enough time to all talk, but I just love everyone.  We really have the best families.

I finally got to meet the Kelly behind RA Warrior!  It was so good to meet her!  She is so sweet in person. I think she made everyone tear up when she spoke.  Two of our other friends also spoke, and did an amazing job.  :)  My son stole a few hearts when he went up to hand one friend tissues.  My boy is a heart breaker.  :)  I love that little man.  <3  All in all we had an amazing day.  I am so happy that we had the opportunity to go without things going wrong.  We really needed a happy day.  And it was!  A big thank you to the Arthritis Foundation for hosting such wonderful events.  We know that most of the money raised for them goes to research and things to help the kids, like summer camp (which is HUGE) and the JA Conference.   It is imperative that people realize that many of the breakthroughs in medicine have come because of the Arthritis Foundation.  They have helped us a LOT.  So we need to try to help them to better help not only our family, but many other families as well.  That said, it is time to gear up for our fundraising for them!  Our May walk is coming up quickly!  I will post here when I get our page up!

Em's surgery & a sick boy

Well, for those not following the saga on Facebook, we finally got to a point of panic with Emily's sinus infection.  Her surgery date was February 22, and with every day that passed by it became more and more clear that she would not make it that far ahead.  The Septra that her pediatrician had called in was doing nothing but making her worse.  I took her back to the pedi on Monday, panicking because I just didn't know what to do.  How could she continue to go to school, how could I get to work every day, if she felt so ill? 16 days was a long wait.  So I brought her to the pedi, hoping that she would prescribe Clindamycin since that had worked pretty well the first time that she used it.  She didn't like that idea.  Apparently, Clinda can be rough on the joints, but also it can lead to an increased risk of C. difficile (Clostridium difficile- a bacterium that can cause severe diarrhea that doesn't improve and can be contagious.)  Awesome.  So we left with another prescription for Augmentin, which had stopped working 2 weeks before, and a low maintenance dose of Septra, which also wasn't working.  To say that I had little faith in this plan was akin to saying that a shot of Prozack could fix it.  I just knew better.  I have come to this point where I just KNOW things.  It may make no sense, but I'm usually correct, and it usually isn't good.  My intuition with medical is extremely accurate.  Imagine how panicked I was.  So, my brain working furiously, I'm thinking "well, maybe if I go to the Children's hospital I can get an antibiotic IV for her".  I didn't want to undermine our doctor though, so I called her to see if that would be a better idea.  Not liking her answer, I called our ENT.  I asked them the same question, and I asked about their cancellation list.  I begged them for anything that I could do to keep her going until the 22nd', explaining the situation.  When you have a child on 4 immune suppressors, it tends to panic the doctor's sometimes.

About 2 hours after my conversation with the office, they asked me if I could bring her in on the 9th.  HECK YEAH!  I would find a way to make it work.  So she had her surgery yesterday around 2 P.M.  She was so excited about the prospect of surgery.  You know you have a very sick child when she wants to have surgery.  My brave little girl didn't utter the "I'm kinda scared" until we were on the way there.  And even then, she was still happy about it.  The only crimp that we had was that they didn't have a way to access her port.  They had to give her an IV in her hand, which she really hates.  Fortunately, she was warned and they do it under sedation, but she still cried about it.  The thought of an IV in her hand was more scary than surgery, and she's had surgeries before!

Today she is resting semi-comfortably at home.  She is annoyed at all of the drainage, but that's because her sinuses were much worse than what the CT scans showed.  The doctor was shocked at how badly her sinues were packed, and he said that no antibiotics could have cleared that out without help.  In other words, it's a damn good thing we got her in when we did.  So is a little upset because she can't breathe out of her nose, she said she still feels sick, but at least we're on the right track now.  The ENT said that we should have the culture results back by Monday.  That will tell us which antibiotic will help her now that the crap is all out of there.

And my son is a little sick.  Not like that bad, but sick.  His last antibiotic didn't clear his infection completely.  He has some residual drainage also, and his asthma is acting up a bit.  She prescribed Augmentin for him, and I'm going to withhold his Enbrel and Methotrexate this week.  I hate to do that, but I would really hate for him to go through what his sister is going through more.  Take one step forward, two steps back.  All in all, I think we're on the right course.  At least there is a plan in place and things in motion.

What's it like?

Very recently there have been many discussions about how this disease is perceived, how people don't understand, and what our kids live with.  This post has been a long time coming, & I really wanted to plan this one out better.  However the time has come that I really need to get this out.

I try very hard to be a positive person.  I feel that God is guiding my life, and we live in that counterbalance of really bad things, then really amazingly wonderful things happen.  My family doesn't really have an in between.  When bad things happen, I KNOW that things will get better soon.  I can't say when exactly or how, but I know that whatever is happening will pass.  Why can I be so positive?  Aside from my great faith in my God, I have gotten used to the stress enough to blunder through it like it's nothing.  This doesn't make our situations less stressful; we just know how to deal better than most.  Also, if it isn't getting my daughter down then I shouldn't let it get me down. This stress is our normal.

Through all of that time that I am busy being positive, I have 2 children now with AutoImmune Arthritis.  My son... not as big of a deal yet (hopefully he'll stay that way!).  Mostly because his journey is just beginning.  His immune system hasn't been as suppressed yet, he only seems to have a little involvement, and we're hoping that his medicine can reverse any damage that's been done.  I'm not saying that it will, but I believe that it can and I hope that it will.

My daughter on the other hand... That child has been given a LOT to deal with.  Arthritis truly is a family affair.  Whatever affects one person will affect the household, and it does.  We pretty much stopped making plans.  We have no idea when she's going to be too sick or in too much pain to go somewhere, even when it's something that she's really been looking forward to.  Most of the time lately that we have made plans, she has ended up in the hospital for one reason or another.  When we do go somewhere, she often is ready to go home shortly after arriving.  She can't be around cigarette smoke, especially now with this stupid chronic sinus infection and her asthma.

While she does hurt still at times, she has gotten used to dealing with the pain.  It's very sad to me that a ten year old can simply adjust to pain, but pain is her reality.

Emily gets sick more often than other kids, and it doesn't just go away for her.  These kids are on immune suppressors, and those immune suppressors work.  Emily is currently on 4 immune suppressors.  (Prednisone and Methotrexate are considered immune suppressors, as well as Remicade and Rituxan.)  The odds of her immune system counts not dipping down too low are slim to none.

Two of those immune suppressors are via IV infusion only.  That means driving two and a half hours each way to get to the hospital where her doctor's are, then staying for as long as it takes for the medicines, which usually totally knock her out that day and the next.  Why do we do it?  Because if it weren't for these amazing medicines, she would always be in her wheelchair in extreme agony with her body attacking itself, with her joints twisting up into deformed poses and her muscles completely withering away.  She would not be able to even write or brush her hair, and she may not be able to talk, eat or even swallow.  Praise the Lord for these meds!  Why do I post pictures of her hospital times?  Because people need to know what these kids go through.  While some people feel that they may need to hide from the world, I don't want my child to feel that she has to hide her disease.  She needs help and support, she needs understanding and empathy.  She is a tiny warrior.  She is stronger than most people can even imagine being.  And she is more brave and courageous than anyone that I know, aside from other sick kids. Just one thing that makes her more brave is that she is willing to tell everyone that she knows that she has arthritis.  She doesn't hide, but she certainly tries to educate.

We worry about what happens if these meds stop working, as many meds aren't labeled for pediatric use.  If something fails at this point, she doesn't have a lot of options. She knows that, but she keeps her faith, she keeps her hopes up.

Some people know how bad she has been.  Even those people haven't seen it like she shows it at home.  The reasons can be found here, in reading the Spoon Theory.  We quite literally have seen her crawling to the bathroom, can't get out of bed, can't walk but later that day there may be some fun event that she doesn't want to miss so she'll "save her spoons".  By saving her spoons, conserving her energy, she may have enough to enjoy some time at the event.  It amazes us.  My favorite was when I broke down in tears talking to her school physical therapist because she couldn't walk or get out of bed, but at a Cub Scout event that night (the night before her 1st appointment with our current rheumies) she was walking around playing games.  I figured they would all think we were lying.  Nope.  Kevin said that people could tell that she wasn't right, but she tried so hard to have fun.  She just saved her spoons for it.  People can't appreciate how much pain these kids can push through, or hide around other people.  They don't want to be different.  They want to be treated equally, with respect.  They want people to understand, which they won't do if they don't see how they suffer.  One of the reasons that I fight for awareness is because I want her to have an easier life as an adult.  I am trying to prepare her future by preparing those around her.  People are so quick to offer empathy for cancer patients, which I totally understand, and am NOT shooting to try to downplay.  However, those same people are the ones that will tell you, "Arthritis?  Thank God it's nothing serious".  They don't realize that there will be no bell signifying the last infusion for our kids.  Maybe one day, but right now that day seems pretty far off.  We make the best of it.  What else can we do?   The truth is, we feel jipped.  No child should have to face daily pain and the threat of disability.  No child should have to worry day to day if they will wake up and be able to walk the next day.  No child should have the constant worry and fear of pain every day, especially those that are in a remission, or if a cold will land them in the hospital.  Remission is kind of scary because you never know when it will end.

Also though, affected child (or children) aside, this affects the siblings.  Maybe it's because you can't afford that trip that you wanted to take or that thing that you told your child you would try to buy, because you need to buy medicine or your sick child has been too sick for you to get out.  I lost track of how many times we were supposed to go somewhere or do something for my oldest but we couldn't because Emily didn't feel well.  Then there's what seems like special treatment to a younger child, but really you have to help the affected child more because they can't do the same things as your well-child. 

And it's not fair to parents that want to enjoy their children, but instead have to watch them suffer.  Most days are good, but we have had some truly heartbreaking days.  We have spent many more days than the average family worrying about how her infusions will go the next day, how her surgeries will go.  And the worrying isn't just one day; I realized that, before she got her port, we had 2 days before her infusions that we would both be a wreck.  She used to scream, kick and cry when it was time for her infusion.  Even more heartbreaking were the days that she could only crawl to the bathroom, when she was too tired to roll over in bed.  You feel sad beyond belief, but also frustrated and angry because your child is suffering and there isn't anything more that you could do about it, aside from what you have already done. 

This is why we take things day by day, and why we count our blessings.  I know that her situation could be worse.  While her case could turn into a terminal case, odds are against it.  (Thank God!)  But it is always possible. At least some of her meds are doing their job.  We hope and pray for remission, then if it is achieved we worry about when it will end.  We wonder how long before she can't get out of bed again. We worry when little things start bugging her, like right now (I guess it's a mini-flare related to her never-ending sinus infection) her back, knees, ankles and wrists have been alternately annoying her.  So we hold our breath, pray and hope.   It was so easy when she was only on Enbrel and Methotrexate.  I miss those days of being blissfully unaware that some cases were worse, and more complicated.  But there are many wonderful things about our current situation.  The key is to being realistic, but keeping hope and faith.  These harder times will pass.  I only hope that this helps someone.