Our latest craziness (written May 18)

For anyone that follows my Facebook page, you already know that we have had a crazy week.  It was actually more crazy than I even let on.

Our lives had basically been put on hold.  We knew that Emily would end up at the hospital inpatient for a while, but we were not sure when.  We had hoped to see a doctor, and that they would keep her, last Wednesday when we went for her meds.  They didn't have a chance that day because they were very overbooked.  The doctor running the clinic is only there once a week.  Emily was devastated.  It's a bad sign when your child actually wants to stay at the hospital.  Especially when said child is the type that never complains.  I spent the days following refusing to unpack, and not wanting to plan anything.

My oldest debated whether or not she had an ear infection.  One day she would want to see a doctor, and the next she felt fine, only to feel badly again the next.  My days were pretty booked up.  I had finally gotten around to scheduling a well-check for myself.  It had been 5 years!!!  I didn't think it had been that long.  While I was there they found a lump, which of course ended up with a mammogram for the next morning.  I had school stuff to turn in, other paperwork to do, and now my own health concerns.  I actually wasn't very concerned until I got there.  They scanned, then they re-scanned.  Then they performed an ultrasound.  Thankfully, I have cysts but not cancerous.  After I left that clinic that day, I ran to school, did a bunch of errands, and finally got home to find that Emily felt worse. We had already scheduled a pedi appointment, so we went there.  We stumped the ARNP.  She didn't know what to do, but she sent us for chest x-rays in case it was due to pneumonia going undetected.  After doing the x-rays we went home. She had already been asking to sleep in our bed over several days before.  One night I just pulled out the sleeper sofa.  Hate that thing.

After we put the kids to bed Tuesday night, Emily decided it was time to go to the ER.  Despite being mostly packed, it still took a while to get us out.  To show you how much of a crazy house this can be, my son's ankle had started to hurt earlier in the day.  He is over-exaggeratedly limping around the house.  He tells Emily as we are packing up to take her to the ER that he is in the worst pain ever that she couldn't even imagine.  Okay.  We got to the ER around 2 AM.  We wanted to go where her rheumy is because we felt sure that all of her problems were rheumatalogical.  This time it was her joints, her muscles, and her chest/ breathing that was bothering her.  They ordered an EKG, chest x-ray, and ultrasound of her liver, kidneys and bladder, and of course they did a urine test.  Apparently she has kidney stones.  They found traces of blood in her urine.  We were unable to see nephrology over the next few days, but we were also told that the best nephrologist is at a different hospital.  .  

Because it is what she wanted, I asked the ER if she could be admitted.  They ran it by rheumatology.  We have been going there since October of 2010, and we have never asked for anything out of the norm, which is likely why they agreed to it.  Her labs look perfect.  That's stupid.  True, but stupid!  I have spoken to a LOT of parents of patients, and patients as well that have said that many times when they are in a flare the labs look great.  Usually the doctors don't understand that, but it is true.  Because her labs looked so good her doctor thinks that her pain is caused by Pain Amplification Syndrome.  Perhaps there is some truth to it, but I really, really think this is a flare- her first since we started going there.  He sent in a physical therapist to do a CMAS (Childhood Myositis Assessment).  I asked the PT about how her score was.  She said "about 20 out of 50".  Her neck muscles seem strong to me, but she can only keep her head & arms up for about ten seconds, and she was afraid to lay down because it hurt too much.  I know the signs with her.  The red spots had started to come back on her hands, two different types.  She had the vasculitis "hot spots", and the smaller red dots that she gets with Dermatomyositis.  Her elbows are pink again at the tips.  Her knees are pink.  This is a flare.  Most importantly, not only did she have trouble holding a toothbrush and walking, she told me how badly her fatigue was affecting her.  The fatigue was getting worse daily.  I guess that we all disagree at some point, and I totally love and respect all of our rheumies, so we agreed to disagree.  :)  I know that he sees a lot of teens that have pain amplification.  He seems to think that is where she is headed because of her age.  I know her well, and I have (obviously) seen her go through everything.  She has always taken it well.  I have some theories.

She started to get the headaches when we started CellCept.  She adjusted after about 2 months, and the headaches went away.  When we started Orencia, the headaches came back, but only for a while.  When we switched to Actemra, not only did they come back but every infusion saw a pain increase with the headaches.  While one would likely assume when reading Actemra's side effects that headaches would be isolated to around the date of infusion, what if that isn't what they mean?  That could solve that.  We discussed going back to Remicade.  Emily is thrilled.  This is my bad: judging by the way she was acting towards the end of Remicade, I felt it wasn't working as well.  I saw her in the bath constantly, something she usually did only when she was hurting.  She is resistant to change on almost everything.  I thought she didn't want to change because she didn't want to try something new.  Apparently it really worked.    He has warned me that it may not work as well the second time around, but we had nothing to lose by trying.

She said that she felt better almost right away after starting the Remicade.  It is likely more because she had three days of IV steroids, combined with Toradol (a strong NSAID) around the clock the three days, but regardless her pain has gone from a 9 down to a 4 today at home all day.

So, right there we need to find a nephrologist, hopefully the one he wants us to see.  He wants her to see pain management because of her age and how they usually deal with pain badly.  He wants her to see a psychologist, because she always seems so sweet and even, and she has never gotten nasty, mean, angry, or moody.  And I mentioned endocrinologist.

Thanks (again!) to KM for bringing this up.  Her son had many similar problems, from lack of growth due to steroids, "something" showing on the MRI, and possible amplified pain.  She explained that (and I apologize if I don't get this 100% right) when the body is not growing right, the cells do not multiply as quickly as they should.  Those cells help the body to heal, thereby reducing pain.  IE: if one is not growing, not only is their body out of whack but their pain can be greater because it does not have what it needs to heal.  I explained this, and the fact that it allowed her son to get off of a considerable amount of medicines!  If we have to add something natural to get off of something(s) unnatural, it is well worth trying.  So we are looking for 4 new doctors.  Apparently pediatric endocrinologists are hard to find also, or we would have seen one while we were inpatient.  At least I feel like we are back on the right road, and we will hopefully be back up soon.  One thing that was beautiful was having so many people check up on us while we were inpatient via phone call, text or Facebook messages.  Thank you all for your love & support!

One last note- I had gotten the camp email saying that she was placed on a waiting list because she had already been to summer camp several times.  She was devastated at first, but she decided that since they could call at any time, she may have a chance.  The following week I received a call from camp.  Due to the severity of her disease they thought that she needed to go anyway!  I tell you, that was exactly what she needed.  She needed something wonderful to look forward to.  Thank you, Camp Boggy Creek!!!  They really helped her when she needed it most.  I was sobbing on the phone.  LOL!  Thank God!!!

*I apologize in advance for anything that doesn't make sense.  I worked a long day, and it is now past my bedtime, not to mention it is a LOT to process.  Back to work in the morning!  Have a fantastic day!  :)

Prayers needed (long)

Right now, every time that I sit down to write, something else comes up that makes me think that I should wait for an answer.  However, since writing helps me to think, I am better off just writing.

Last Friday we went for the requested MRI's to figure out why Emily's head has been hurting so much, for a month or two without relief.  While she seemed so prepared, once we were in the room with the machines, the tech mentioned that he would have to poke her for contrast.  This started an uncontrollable wave of crying that lasted about a half an hour.  It made him very nervous.  She finally calmed down enough to try the jaw MRI.  When the time came for the tech to try the contrast, he couldn't get a vein.  Two tries and she was so upset that he did not push.  It was draining and terrible.  In the end, he showed us clips of her brain.  I thought that was really cool & sweet of him.  He didn't have to.

We went to the hospital on Monday.  I was hoping that we would have an opportunity to really sit down with the doctor and talk for quite a while.  What I didn't count on was spring break.  While there are usually 3 doctors, two Advanced Registered Nurse Practitioners and an RN, this week there was only one doctor and her secretary.  She barely had time to breathe, though she did order a Pulminary Function Test when I mentioned that Emily was having a hard time breathing and her chest hurt. I was planning on getting a plan for exactly how long it would take to wean off of Prednisone, but instead I just got a "we are working on it".  Ok, I get that.  Things happen, we may need to increase, etc.  I may not like it, but I understand.  It's hard to push when she still hurts in so many joints.  I am not convinced that Actemra is right for her, but here is to hoping that it kicks in soon.  I was hoping that we would have MRI results, but no such luck.  She couldn't find them.  We didn't officially get PFT results either, but I did receive a comparison with last time which tells me that everything there is ok for now.  Oh, and we got a prescription for the *occasional use* of Xanax.  This way she hopefully doesn't make another tech nervous.  I didn't have nearly enough time with her, for the most part.

This time on our overnight, the pharmacist came by to go over meds; we never even saw a resident.  I actually like it better that way.  It's nice to cut out the middleman.  For the first time we got a room that was not properly cleaned, but they brought up a dinner tray- something that we usually don't see- and it was what she wanted.  Bonus!

When we got home I started preparing for the appointment with the oral surgeon.  I had debated on whether or not to cancel this, but in the end I decided to keep it because if her headaches were caused by arthritis of the TMJ joints, we would need an oral surgeon.  I had the panoramic from the dentist, the CT results that suggested the molar roots in the maxillary sinus cavity, and the paperwork.  I arranged to also pick up copies of the MRI's from Radiology Associates.  I was not prepared for the report.

They had done 2 MRI's- one of her jaw and sinuses, and one of her brain.  The one of her jaw apparently was not that fantastic.  She moved and they did not get good images.  They did not even mention the sinuses.   Of course they ask me some questions, as well as get a report from the doctor.  We checked yes to headaches, tinnitus, dizziness, feeling off-balance.  We discussed MCTD, Dermatomyositis and the intricacies of rheumatic diseases.  I mentioned that vasculitis had been thrown around here and there, but it never went further than that.  Then I get the report.

  Sometimes it is a beautiful thing to be blissfully ignorant.  I have somewhat looked up vasculitis before, but since it was never (in my eyes) an official thing, I didn't worry about it, so it struck me at the bottom there- "history stated CNS vasculitis".  Whose history?  Presumably from the doctor's since I never said that.  So, what else would I do?  I google.  And I find this:  "If a blood vessel with vasculitis is small, the vessel may break and produce tiny areas of bleeding in the body. These areas will appear as small red or purple dots on the skin. If a larger vessel is inflamed, it may swell and produce a nodule (lump or mass of tissue), which may be felt if the blood vessel is close to the skin surface."  
I had asked in the past what those red spots on her hands were, but I guess I just didn't really put two and two together.  She also pointed out on Friday that she has a "nodule".  I wasn't convinced that it was a nodule, but I guess it may be, or it may be vasculitis.  Yes, this is why the MRI was supposed to have contrast.  So, that floored me, but only later.  What really got me was the Chiari I Malformation.

I had heard of this before, so it wasn't a completely foreign term.  I had even studied it briefly at one point, just because it sounded interesting, and a Facebook friend had one.  I'm pretty sure my heart stopped when I read that, though.  My first conscious thought was "it has to be from the damn steroids!"  Apparently not. They say that it is genetic.  Hmmm.  Of course, I read.  As soon as we got into the oral surgeon's office I googled Chiari, and was stunned to find that she really does have many of the symptoms.  On my phone that was the best I could find very quickly, but she has many of those symptoms.  It even explains her chest pain.  I also read that it is usually diagnosed off of symptoms and an MRI, so my guess is that she will be diagnosed as soon as we get into a neurologist, though I want to speak to an endocrinologist to make sure that it isn't cysts affecting her growth.  (Thanks again, KM!)  In an effort to expedite things, I popped by her pediatrician's office and left a copy of that report.  I am hoping that somebody should call me back no later than Tuesday.  

And the oral surgeon didn't have the greatest news, either.  Pretty much, she does not technically have TMJ, but the muscles that support the joints are weak and sore, which is causing that pain, though it is also possible to have pain there from a Chiari I malformation.  He said that given her history, this is likely an early warning sign of TMJ arthritis.  He pointed out that her bottom jaw is not growing the way that it should; it is a little small, so when she is 16 they will likely yank a few teeth to make room for her molars and give her braces to help extend the jaw.  Hopefully by that point she will have grown, and maybe her jaw will catch up by then.  The roots are NOT in the maxillary sinuses- just close to.  However, those are only her 2nd molars, and there is no room for them.    

So, yeah, pretty much in a nutshell, Friday sucked.  The icing on the cake for me was finding out that they messed up when they did our taxes, and we are getting back $300 less than what we were told.  Yeah, and that refund check will definitely not be here by this week.  We should have had our refund by now, but this is how we roll.  

There is so much to process, and figure out.  Hopefully we can get the ball rolling this week.  If she wasn't in pain daily, not able to concentrate, than I would maybe not worry about it.  They say that most people that have a Chiari I malformation have no idea that it is there, but of course she does.   It really makes me sad that everything happens to her.  I now cling to the knowledge that she may go into remission on the MCTD front later on in adulthood.  She really needs a break.  Please pray for Emily that we get all of this taken care of without the need for surgery.  Thank you.

Hoping for real answers on Monday

It seems like it has been a long time since I have posted.  I don't know where my days go!

Overall, Zach is still doing pretty well.  We have noticed that he simply cannot handle being on his feet for long before his heels and ankles begin to hurt.  It isn't the end of the world, but it isn't fair to him when we go places, like Lego Land with our favorite arthritis families!  It was so wonderful to see so many of our extended family members, as well as meet a few whom I have been typing to for years!  It was tough on Zach, though.  I never think to get him a wheelchair.  We should have.  Next time.

I'm not really certain where to start with Emily.  The easiest part is Actemra.  The first three doses seemed to give so much promise; they all bought her about eight mostly pain-free days.  She has had five doses now, I think, but the last one only worked for about two days.  We have spoken to our rheumy group about that, but for the moment they want to see if it will kick in.  If it does not, I am not sure what our next step will be.  She consistently hurts in her knees, hips, back, ankle, and shoulders.  This is the worst that she has felt in quite some time.  She is moving around less and less, because it is so difficult and her balance is off.

The other problem with her right now is the continuous headache.  We have been on the runaround, which I am putting a halt to.  I had mentioned it to our rheumy group the past month or two, but at the time it wasn't significant.  More recently, she started pressing the issue more, so we have delved deeper.  Our pediatrician had sent her for a CT of her sinuses.  The CT came back that she was still congested, but also it claimed that her molar roots were spreading into her maxillary sinuses.  Next step was the dentist.  We had a panoramic done, which our dentist does not think looks as though the roots are an issue.  He referred us to an oral surgeon.  All of that is lovely and all, but I still did not have a reason, so we decided to see our pediatrician.  She concluded that it is likely her TMJ joints in her jaw- the only joints that did not "seem" to be affected prior to this.    So, in desperation I called our rheumies.  Because the scheduler's had messed up our appointment times this past month, we skipped seeing a doctor when we were there.  (I should have bugged our rheumy at Lego Land, but even then I did not realize how much these headaches were affecting her!)  I left a detailed voice mail on Friday afternoon which likely held a note of desperation.  They called me back fairly early on Monday.  Tomorrow we are going locally for two head MRI's.  Hopefully one will be MRI and one will be MRA.  The MRI's will be of her sinuses and TMJ joints, and the other will be of her brain to (hopefully) rule out vasculitis.  These headaches have consistently been about a 4 for her for at least the past month.  Nothing that we do here helps.  Antibiotics had no effect.  She can have 325mgs of Tylenol,  but that's it since she is on Mobic.  She needs the Mobic more for her joints right now.  Tylenol does help her joints a bit, but not her head.

She also popped out here a bit ago to tell me that her chest is hurting again.  We have established that it hurts when she breathes, so tomorrow we will dig out our nebulizer again.  I will have to add that to the list of things that we discuss on Monday at the hospital.  The wonderful thing about having the MRI locally is that we should have answers to our questions about her head on Monday- at least some!  Hopefully they will be able to listen to her chest then, also.  She is already on Symbicort and Singulair daily.  I would like to add Spirulina, the natural blue/green algae.  I have to make sure that it will not interact with her other meds.

Please keep us in your prayers, if you would.  This has been a tough time.  She doesn't want to do anything or go anywhere.  I really feel that having our puppy is such a blessing to her.  He has been so great lately, and he really helps to take her mind off of things, or at least he gives her something good to focus on.

One last thing:  Zachary will be ten on Sunday!  I am not sure where the time went, but he is so sweet, so smart, so funny and loving.  I am so thrilled that he is my boy.  

Appointment for Zach, and test results for Em.

We had an early morning today.  On the happier side, we saw two hot air balloons on our way to the hospital!  It was a really neat experience for the kids!  By the time we got to the interstate, we had come fairly close to one of them, certainly closer than they had ever come before to one.

I'll start with Emily because our month has been difficult with her.  She had gotten a sinus infection just before we went for her meds two weeks ago.  We started her on antibiotics only a day or two before.  I wasn't overly worried because she was receiving her IViG that week.  Usually that would boost her immune system up enough to kick an infection.  I was surprised to see that her IgG count (immune system) was up around 700- normal.  Hmmm...  I thought that surely with a good IgG and added IViG, she would be just fine pretty quickly.  That was a Thursday and Friday hospital visit.  We also finally had the hand MRI done during that stay, though only for one hand.

By Monday she felt worse.  We went back to her pediatrician, who increased her Augmentin from 1.5 teaspoons to 2.  She also insisted that we give Emily Xopenex in her breathing chamber every six hours.  The very next day her pedi called me on my cell phone, from her cell phone, on her day off to make sure Em was doing ok.  She informed me then that her breathing was so bad that she considered sending us to the ER, but opted instead to check up on us, and ask us to start using the nebulizer.  I had lent that to my parents, so I borrowed it back from them.  Em was seen that Wednesday.  Her breathing sounded much better after 4 rounds of albuterol in the nebulizer.  Phew!  Not out of the woods yet, we were asked to bring her in on Friday for a CT scan of her sinuses.  We couldn't get a Friday appointment, but we were able to have them done on Saturday morning.  I am so glad that we did!  By this Wednesday, since she still wasn't feeling any better, I called our rheumies, wondering what we should do about her infusion the next day?  I also called our pediatrician and had them fax the CT results to our rheumies.  I had six calls to and from the hospital, between the nurses from the infusion room, to the RN that helps keep the rheumies on the same page.

The end result for this was an infusion of IV antibiotics before her Actemra.  The RN had at one point called me and said that her head was still so full that she didn't feel comfortable telling us to come in, but the doctor's ordering the antibiotic changed the game.  She also said that apparently, the roots from Emily's molars are growing into the maxilliary sinuses.  I found that to be rather interesting.  She had a CT of her sinuses a few months ago, and nothing was said about that then.  On my list of questions for next time I will have to ask if this is possibly a result of the stunted growth from her steroids.  I am assuming that her face and jaw are not growing as well as they should be, so this would make sense.  Thinking about the advice of a friend, I believe we will ask them to refer us to an endocrinologist.  (Thanks, KPM!)  I hope to have more answers on Monday when we go back to the hospital to see the ENT.  I have no clue what the answer will be to the molars getting into her sinuses.  As my husband said, that explains the pain that she has had in her jaw lately.  On the bright side, she can now feel the Actemra working.  She was wiped out, but she felt better last night.

The other thing with her is the MRI of her hands.  I was extremely happy to see that there is no joint deterioration, but there is tenosynovitis.  At least now we know why they hurt so badly so much of the time.  We received her TENS unit this week.  We will have to use this to help that.

Zach's appointment was much less complicated.  The end result with him is, while there continues to be signs of progression, there is not enough cause to change medicines.  I am happy with this.  I really do not want to try Humira, mostly because of the burn.  He is experiencing swelling in his right knee and left ankle, but not really any pain.  Occasionally his knee will hurt, but his ankles are worse.  He also has a spot in his back, but it doesn't bother him often.  However, they are not bad enough yet, which is fine with me!!!  His psoriasis isn't so bad either.  He has a spot on both elbows, and his head is starting a bit, but I also held his meds this week because he has been sick, too.  I am glad that one of them is stable.

The funny thing about having two sick kids is that, since Zach is so much more well than Emily, it is hard sometimes to remember that he is sick, too!  It would be lovely if he would hit remission.  We will never lose hope.

Little update

Our little roller coaster is rollin' along.  We went for Emily's first round of Actemra on Thursday.  She says that she doesn't really feel a difference yet, but I think that she is moving better.  We got our hopes up because I found an article that stated many kids can feel the Actemra working within a few hours.  I thought for sure that Em would be one of those kids;  usually if a medicine is going to work for her, she feels it almost immediately.  I still have high hopes that this will work- it just isn't happening as quickly as I would like.  Her hands and toes have been extremely bad, but her knees, hips, back and wrists have been kicking in as well.  She has been back on Mobic every day.  Hopefully when she goes back in two weeks, that round will help.  Actemra is a bi-weekly infusion, which is a pain, but if it works....

Last time, they had ordered labs, then later in the evening they ordered more labs.  I had seen the report from the first set, but I had not seen the report from the last set.  Not only were her inflammation counts down, her muscle enzymes were low.  For a child with Dermatomyositis that had muscle pain and active rash when those labs were drawn, a low Aldolase is weird.  I'm not arguing, mind you.  They took it twice that day.  The first time it was 4.9; the second time is was 3.2.  I still have things to research here, as soon as I can find some time.  They ran another Scleroderma panel.  Something like 62% of people with Scleroderma are negative for the antibody, so I'm not very surprised that she has so many symptoms but she's negative.  Hopefully her MCTD won't turn into full-blown Scleroderma.  We can deal much easier with just "features".

We were home on Friday when my son goes limping behind me in the kitchen.  He was trying to slide by without me noticing, but it's hard not to notice him limping.  His knee was swollen and sore.    It was feeling better by the next day, but still... His knees never bothered him before.  I am hoping it was a fluke and not new joint involvement.

And yet, through all of this I think about how happy my family is together.  I think about how we may be if it wasn't for crazy health problems.  Would we be well if we hadn't had mold in the house?  Would we get along at all if Kevin and 2/3 kids weren't sick?  I am pretty sure that I wouldn't have had the confidence in myself to go back to school.  I certainly wouldn't have the same motivation that I have.   We wouldn't be homeschooling, which I think is really cool!  And we probably wouldn't have a cute new furry member of our family.  (Even though he is a bitey little puppy, he's very loved!)  Yeah, Kevin and I have had a few rough years that I don't know how we got through, but overall I am so happy to see him come home every night.  Who would have thought some 19 years after meeting him that I would still love him?  Or even like him?  :)  Yup, he is my rock and an awesome father.  I thank God for him and the kids every day, multiple times.  I would be lost without those 4.

And of course there are always those that have it worse than us... no matter who you are or what you are going through.  I have shared on my Facebook the story of a boy named Cameron.  About a year and a half ago, Cameron began having seizures.  They couldn't get them to stop, or figure out why he was having them. I believe it was 21 days before he was stabilized, but he was left having to relearn many, many things.  There was some permanent brain damage.  He went home and began the long recovery process.  Just as he was about to "graduate" out of physical and occupational therapy, he was hit with another round.  This past Christmas morning, he began to seize violently.  This time, they had a much more difficult time figuring out how to stop his seizures.  He was on quadruple the amounts of medicines than he should be, but what else could they do?  They finally did stop the seizures.  When they went to take him off of the ventilator, his lung collapsed.  They discovered he had an infection, so he is on antibiotics and they re-intubated him.  They are weaning him off of the ventilator.  However, the doctors still have no idea why this has happened.  He has now defied the odds twice, though he's not totally out of the woods this time.  Please pray for this boy- that he recovers, that he retains his fighting spirit, that he does not give up.  Please pray for strength for him as well as his family.  He has a twin brother.  Can you imagine being that brother???  I can't.  Please pray for him and their other siblings.  I believe that boy is still alive because of the awesome power of prayer.

Another new med coming our way

This appointment went a little more like I expected last time would be.  We have three different rheumatologists working out of our clinic.  We have pretty consistently seen the one male doctor the for the past year, mostly because of the days that we have made our scheduling.  We don't play favorites- I think that they are all fantastic.  However, sometimes there are situations that I feel one really needs to see the doctor with the most experience for, or at least get a second set of eyes for. 

This past six weeks Emily just went downhill.  No, it wasn't nearly as bad as 2010 when she was too tired to roll over in bed and crawling to the bathroom, but it was the worst flare that she's had in a while as far as joints and muscles are concerned.  I am just happy that we got her throat stuff under control before this flare hit.  Every day for the past six weeks something new has hurt.  The pain in her hands- most notably her thumbs- has been the most significant.  One of our occupational therapists had ordered her new splints, and started wrapping her in KT tape to give her added support.  She has still felt pain badly enough to want to rip off her thumbs and toes.  Then her ankle, thighs, knee, shoulders, and wrists decided to kick in, with the occasional shout out from her hips.  The month was miserable for her. 

I had hoped that we would see the head doctor this time, but I didn't expect it because she has been doing a lot of research related work.  I was so thrilled to see her come our way!  I have missed her.  :)  She's just so sweet and caring.  (They all are, really.)  She agreed immediately that Orencia isn't cutting it.  We are going to give Actemra a try.  I had expected this before we started Orencia, honestly.  Actemra was first approved for the Still's Disease (SJIA) kids; recently it was proven effective and approved for poly JA kids.  Since Emily is a mix of things, I am hoping that this works well.  She should be set to start it in two weeks.

The hands are posing more than the usual concern.  We had an MRI scheduled for her hands, but they said that it would be 1 A.M.- a day and a half after the order was sent to them.  We stayed all day today waiting for it, but we just couldn't wait for them anymore.  We're already changing meds so it won't affect treatment; they just wanted to see why they are such a mess.  Our other doc says that her hands are much more scleroderma now than arthritis.  Not what I wanted to hear.  It makes sense, I know.  I would just be more comfortable thinking it was "just" arthritis.  

One thing that I found interesting through this is that her labs look awesome.  You would think that as much pain as she is in, as much stiffness as she has, as much as the rash is coming back out in her knees, elbows and around her eyes, her labs don't show it at all.  I asked the doctor if it was just because we were two weeks later on the IViG this time than usual, and he said likely so.  But one would think her labs would show it.  No elevated inflammatory markers, no elevated muscle enzymes.  Weird.  Awesome, but weird.  This is good to know for future reference.  I know that many adult rheumies assume that if your labs don't show inflammation, you don't have any. 

So, we go back in two weeks to try Actemra, and we hope that the MRI works out in the near future.  And for now, I am going to pass out in my own bed.  I have to be at work in a few hours.  I'll keep ya'll posted!

November appointments

Well, I'm not really sure where to start tonight.

We had already pretty much decided that Orencia wasn't really working for Emily, however I wasn't expecting our doctor to suggest just dropping it and hoping for the best.  Granted, we would be keeping the Rituxan, which she feels is actually helping a lot, but still...  I mulled that over for a little while, and decided that with her recent daily thumb and toe pain, that is probably not a good idea. She has told me that they sometimes hurt so badly that she wants to rip them off.  I totally love our rheumy's- ALL of them- and I think this was the first time the question seemed completely not aggressive.

The night went by uneventfully, with no visit from the doctors until just as I was about to go down the hall to take Zach to his appointment.  Just as we were starting off, one of the other rheumies came over to see us.  She asked me how I felt about dropping the Orencia, and I told her my fears about the thumbs and toes.  She told me that she was not fond of the idea, enough to have mentioned it to the head of the department.  This is part of the reason that I love our team- they actually communicate.  I like our other option much better- instead of dropping Orencia, we will spread it out to every six weeks.  She also asked when our last Prednisone decrease was.  Ummm... long enough ago that I can't remember when.  Well, permission to drop 1/2 of a milligram... granted!  :)  That had me over the moon!  I was so excited!  No, it isn't a huge drop, but it is huge to us!

So, I left our room extremely happy, expecting an easy appointment for Zach and then on to home.  Not so much.  While he looks great, our doc noticed that his toes were swollen.  And they hurt.  And his back has an arthritis spot.  Which usually means Spondylitis in a person with Psoriatic Arthritis.  So, yeah.  Not thrilled.  I was very glad that his appointment was today and not yesterday.  I like thinking our appointments over on the way home.  It's harder to think straight when they keep talking and giggling.  It just hurts your heart to hear these things.  This is not what you want for your kids.  I had really hoped that Zach's would be easier to deal with because we caught it early.  He responded so well to Enbrel at first.  I really thought that this would easy.  He's HLA-B17 positive- that is a psoriasis marker, and it often means a more mild form of arthritis, if I remember right.  I thought we were clear.  So far, it doesn't bother him too much, so it obviously isn't really bad right now.  He has complained of his back once or twice.  He complains of the feet often, and on Halloween it was the ankles.  No changes in meds yet- we are to just keep an eye out and see what happens.  We will go back in 3 months, but call if anything changes.  

On a sweeter note, we were asked by one of the rheumies if we were going to be at the Jingle Bell Walk.  :)  We don't go to that event, only because it is so cold, but I thought it was cute that they were thinking about it, especially since our walk is so far away from the hospital.  I really do love our doctors.  But I would like to put them all out of business by finding a cure, please.  Then we could all just hang out and talk medicine without actually having any medical crises ourselves.  On the bright side, we don't have to go back for six weeks.  Woot to that!    

Oh, and we got a dog!  We swore that we were NOT getting a puppy, and we were NOT getting a big dog.  You know what they say about the best laid plans, right?  We have a shepherd/ husky/ lab mix.  He is three months old.  We were both thinking that he was six months old, but no, he's three months.  His name is Brody, but I swear I may change it to Bitey.  He is definitely like a baby, and so cute!  Assuming I can get his immunizations tomorrow, we should be good to start him in training classes tomorrow!  I am so hoping.  We need to get him to stop biting, and so far the tips that we have found on YouTube are not working.  He is good with the younger kids; it's just me, Kevin and poor Ash.  He especially loves to bite Ash!  She'll be just sitting on the couch texting, and he comes up and starts biting her.  Poor kid!  PetSmart said that they can get him close to therapy dog in training.  I can't wait to start!  I'll keep ya'll posted!