Wednesday, July 3, 2013

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.

1 comment:

  1. It sounds like a crazy busy schedule, and a lot of things to do (and consider) but I am encouraged by the fact that there seems to be progress in getting a few of the lingering issues (kidney stones and pain issues) under control! Hang in there- when you look back you wont be sure how you ever managed to do it all, but I know you will. In the mean time, just keep putting one foot in front of the other!