Anyone have a cheap helicopter for sale?

Looking back on the past few years, I have NO idea how I worked full-time.  This year has been so hectic, and we have added so many new specialists.  The past few months have been extremely difficult and overwhelming.

Zachary is doing better than Emily still, but we have noticed... things.  For instance, now that I have "kicked the kids out of the house" (to play), he complains more about pain from behind his knees.  His rheumies hadn't mentioned anything before about enthesitis-related, but with Psoriatic Arthritis it does make sense.  His ankle pain comes and goes, but lately it is more knees than anything.  Last month when he saw our rheumies, we were talking about a friend of his who has had a lot more disease activity.  I pointed out that Zach's case is relatively mild, but the response that I got back was, "PsA is a lot harder to treat 10-15 years out.  PsA kids tend to be the hardest to treat and control down the road".  Great.  My heart sank.  Fortunately, we live day-by-day!  I am not going to get caught in that trap, and I won't let the kids get caught, either.  I'm just happy that he is outside playing.  Emily has been playing outside too, though she doesn't last as long.  I am sure that she has been depressed, but hopefully the plan we have will address that and correct it quickly.

I have always been the mom that knows what is happening.  It has been very rare that I was wrong- but the past few months I have felt so out of the loop, like I'm part of a guessing game.  I think we are on the verge of getting that situated, but still it has been hard on me.  Being this hard on me, I can't imagine how my little people cope.  We did switch back to Remicade, which definitely seems to be helping.  She has gone from having mostly 7-9 on the pain scale days to 4-5.

I think I am finally figuring out Emily again.  Ok, this is a lot.  So, she does have kidney stones, which we feel are definitely making life more difficult.  However, what makes everything tougher is that she has "Pain Amplification Syndrome".  I have mentioned before that it was brought to our attention that when one isn't growing properly, their cells aren't reproducing the way they should, which makes the body hold pain in.   After a friend mentioned it, I started suggesting it to different doctors.  They all agree.  That said, we see endocrinology on July 17th.  I am truly pinning all of my hopes here.  As KM said, in their case once growth hormone was added, the first month was horrible but after that everything settled down.  Pain came down, growth started; the best part is that the hormone is a natural hormone, and for them it helped them to decrease some and eliminate other medicines.  I would LOVE that!  I am quite sure Emily would, too.  I am also hoping that this will help her headaches.  Neuro-opthamology didn't see any reasons for her headaches, which I now think may be a combination of hormones (pre-pubescent) and the pain amplification.  We are scheduled to see nephrology the same day we see endo.  The very next week Em has her first psychology appointment, and the day after that she has a procedure to blast her kidney stones out by sonic waves.  They will sedate her because a tube needs to be inserted up into her kidney.  They tell me they will repeat this procedure on another day because sometimes they stones are stubborn and either won't break up or will break up but won't leave the kidney.  We really hope that having these little nasties gone will help her pain level go down a bit.

Another new specialist that we have added is pain management.  That doctor wants her to try aquatic therapy three times a week, as well as biofeedback.  She says that these will both help the amplified pain syndrome.  I'm just not sure how to fit these in.   We have found the aquatic therapy close by, but I still haven't spoken to a provider for biofeedback.  Right now it looks as though it may be an hour south for BF, close to urology.  Comparatively speaking that is not bad.  Rheumatology, who handles pulminology and GI are all two & a half hours north.  Pain management, endocrinology and nephrology are all 2.5 hours east.  With all of these appointments, school work for the kids, and my own schooling come fall, how the heck am I going to swing aquatic therapy three times a week?  I'm not sure, but I know that we will.  If it will really help her, we will do it.

The pain management doctor prescribed pain patches for her.  Just lidocaine, but it seemed to help her knees a bit.  I love that she chose something that didn't require another pill.  I am not familiar with biofeedback, but from what I understand, it involves teaching the child how to cope and deal with their situation using relaxation techniques and monitoring bodily signals like blood pressure and pulse oxygen.  It sounds really cool!  Our advocate has suggested waiting to see what psychology said.  Our psychologist was thrilled that we found a doctor who believes in hypnosis and biofeedback.  I think psychology is a little overwhelmed by our situation.  We had a good laugh over that tonight.  She was pretty amazed at what we are dealing with.  Like I told her, one day at a time and we stay close.  None of us could do it alone.  We need to take this all on as a family.  It would just be easier if we had a helicopter.  Or two.  Or a fleet.

Last thing- Camp starts Saturday for Emily!  She is SOOOOO excited!!!  In truth, for the first time I am glad for her to go to get her out of here, to get a break.  She is so sweet and wonderful, but it seems like every day we are at some appointment.  That will be one week where we are guaranteed not to have to go to an appointment for her.  The down side is that we had stopped Mobic (an NSAID) a couple of weeks ago because it was starting to hurt her stomach.  Since we were stopping Mobic we decided we would drop Carafate (similar to Xantac, it coats the stomach).  Today we ended up back at the pediatrician's office, thinking that her antibiotic wasn't working for her sinusitis.  It turns out that her sinusitis is gone, but her reflux is acting up again.  The Carafate is such a large pill.  I cut it in half for her but it is still so big.  She really hates taking it, and we were so excited to drop basically three pills a day.  Now it's back on the Carafate.  I'm not sure how she handles it, but she is pretty amazing.  I am trying to get us on a wheat-free, gluten-free (or very reduced) diet.  It is very difficult when you have children who are as picky and stubborn as Emily.  She literally won't eat if we don't give her one of her staple foods, but we are learning how to find healthier options.  For instance, I could buy all kinds of fresh fruit but it will sit in my fridge and rot.  I discovered an organic fruit pouch (no GMO!) that my kids have sucked down.  It's actual fruit- not juice.  If that is the only way I can get them to eat fruit, I will do it.  Baby steps.

I will keep y'all updated as we determine new things.  It has just been tough.  Thank you for reading and supporting us.  As always, prayers, blessings, whatever you have to offer, we will always gladly accept and  appreciate fully.

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!  :)

Crazy day coming to an end. (Long)

Today went by in a whirlwind!  We both had a difficult time waking up this morning, but we actually got to our first appointment on time. We waited for about ten minutes to be called for the CT scan of Emily's sinuses; the actual scan was even faster. She did very well. She was a little scared once the machine picked up speed. It sounds like the whirring of a washing machine. That can be scary when you are not expecting it, especially when it is over your head.

From the CT lab, we wandered upstairs. We had a longer stay in the pulmonary waiting area, but they called her at exactly nine. The tech that performed the test was such a sweet lady! In fact, her daughter has chronic conditions, and we share a doctor. She was telling me how her daughter decided that more kids needed things to do in the hospital, so she decided to gather supplies and bring them to kids in a wagon. She was seven years old at the time. That really touched my heart!

Anyway, the tech was wonderful. She made Emily feel more at ease, and she explained everything very well. She took gauze and soaked it in a solution made to produce sweat, then she wrapped the arms, put electrodes on them for five minutes per side and wrapped them in ace bandages. Em grabbed the tablet and watched "My Little Pony" for the majority of the time. When we finished there it was already after 10:30. We walked down to the fourth floor to let them know that we may be late. I'm so glad that we did! Emily hadn't eaten yet, and we still had to get to the ENT for eleven. I stole a few minutes and grabbed her some chicken from Wendy's. The wait was interminable!
We actually made it to the ENT on time. I don't know how considering that we had to wait for valet to bring the van. (Using valet is so much easier than walking for blocks with a hurting, tired child and a bunch of stuff that you need.) I had thought that we were in the home stretch. We would have been, but the ENT was running about forty-five minutes late.

I really thought that I knew how this appointment would go. I was not expecting to see so much inflammation still on her CT. Her right side is nice and clear. The left side remains all swollen and shady. The doctor can't say for sure that it's mucus. What they do know is that it is inflamed. They decided not to worry about treating it right now because she has not displayed any symptoms of a sinus infection. Of course, they didn't have the results yet from the Cystic Fibrosis test. I am assuming that will be negative.


We did not get back to the hospital until one P.M.   I could not believe that we were so late! I was very thankful that I let them know that we may be held up. Shortly after arriving we met up with an advocate who works for a company that works closely with our insurance company. She asked me a ton of questions, and she told me that she will try to get us whatever help she can. Her job is to help get medicine and equipment approved, help to find resources, programs, clinical trials, and things of that nature. She flew in just to meet with me for about an hour. I was very impressed. We are going to work on getting a hospital bed approved!  What a blessing this service is.  And she was wonderful!

After she left things started to settle down a bit. The rushing around was mostly done; we just had to wait for the IViG to get started so that we could move to a room. I didn't expect to see a doctor since we did not fill out any of the paperwork, but as we were packing up to head to our room for the evening our main doctor came over. We totally love her!!! She is just so sweet, but she also has more years of experience than the other two rheumatologists combined. She did the strength tests and was very pleased with Emily's muscle activity. We talked a little about medicines- mostly which ones Emily is on and which dosages. She had just started looking at Emily's hands when she asked if we thought that the Remicade was doing enough. I replied that I didn't think that it had been quite enough for a while. Emily was actually doing so well today that I was surprised that she even asked. She told me that, as much improvement as she has seen in Emily, she doesn't think that it is quite enough. Because Emily now receives her IViG to boost her immune system back up, she feels more comfortable about aggressively attacking the arthritis. She wants to see her running more, being more active, and acting like a kid. If insurance approves it, tomorrow she will be starting Orencia again. She had three doses with our old rheumatologist, but when we changed doctor's, they chose the right route, which at the time was high steroids, Methotrexate as second line and Remicade as third line for Dermatomyositis. It wasn't thought to have any effect on DM before, so we changed. Emily is a little nervous, but I'm actually a little excited. We are pushing the envelope, but lately she's had more days where something hurts than not, and that isn't how it is supposed to work.

As one last little shocker, once we moved to our room and got settled the nurse announced that she was going to briefly stop the IViG and give her a round of Rocephin, a good all-around antibiotic. At first, I was very surprised, wondering what I missed. It was a very long day. I realized that Dr. E likely saw the CT scan results from this morning, saw the inflammation, and decided to tackle it. This is one of the reasons why we love her! She isn't afraid to treat the WHOLE child. While some doctor's only take on little pieces, she takes over everything that she can. And this is why we would rather drive two and a half hours from home instead of drive an hour away.

We shall see what tomorrow holds. It will be today by the time this posts... Hopefully we will also know the results of the sweat test no later than Wednesday. Praying that tomorrow is an easier day!