Wednesday, October 31, 2012

Finally! An October spent inpatient ONLY for meds!

It was October 13, 2010 that Emily was diagnosed with Dermatomyositis, and officially diagnosed with Mixed Connective Tissue Disease.  That week, she was kept inpatient for six days for heavy-duty steroids and other meds, along with a plethora of tests to rule out other not-so-nice diseases.  It was last September 26th that she had the port placed, and it was early October when we realized she had staph in there.  That led to an almost month-long stay.  It broke her heart to have to miss the fall carnival at school and Halloween.  Granted, she was able to trick-or-treat at the hospital, but it just isn't the same.

I am happy to say that this October the bad chain was broken; we had our typical overnight for meds, then we were free to go home!  Thank you, Lord!

I didn't mention Zach again this time to our rheumy.  I believe last month was just a fast psoriasis flare, likely due to the change in weather.  He has a small spot or two, but for the most part it isn't big enough to concern us.  I'm keeping my eye out, and I know he will tell me if anything changes.  We are planning on using the Body Check Journal to see if we can establish patterns for both kids.  If you have ANYTHING that you are trying to figure out (rashes, erratic behavior, allergies, flares, etc) I strongly recommend that you try this journal, lovingly made by one of our favorite arthritis mom's.  She has discovered so much about her daughter by doing this herself, which is how she thought to make the journal!

Em's appointment went better than I thought it would.  Our rheumy was sick, and it was a bit hard to understand him over the noise and through his mask, but we decided together not to make any changes yet.  He said that studies show that Rituxan, Orencia and CellCept in combination are proven to help things like her throat issues, but it isn't something that we can do for more than a few months.  He doesn't want to backtrack before giving the combo a fair shot.  Since it's only been 2 months since she's been on CellCept, and 5 or 6 for Orencia, he wants to be patient for just a bit longer.  I'm good with that.  The biggest fear is her throat, so if this combo will help her throat the most, we will wait.  Monday and Tuesday she received her Orencia (30 mins), Rituxan (4 hours) and IViG (over 12 hours).  Wednesday is the day for her to recover from meds, and for me and Zach to recover from stress, and lack of sleep.  Poor little man has a cold, too.

It is crazy how much has changed with Em in the past month or two.  When people ask me how she's doing, I have no idea how to answer.  Here's why:  yes, the throat problem is pretty big, and scary.  However, she has been running around, trying to hoola-hoop, and she has been giggly.  Really giggly.  She sounds.... happy!  On the flip side of that, for a few weeks there she was taking 2-3 baths a day.  Usually she does that when she's hurting or stiff.  I have no idea what to make of it, but I take the running and giggling as good signs.  It's been so awesome to be home with them more!!!  I expect them both to be more giggly when we change our homeschool program.  We are just worn out from the amount of work they have around other things, like therapy.  We found a new program that I suspect will be the winner for us.  I know two families that use it and absolutely LOVE it.  They have similar situations, so I think this will work well for us.

The steroid weight has started dropping more!  She started steroids at 42 lbs. (and really under weight.)  Two months later she was 75 lbs.  Today she was 60.5!  Her clothes are falling off of her.  I had to go buy her new jeans.  She fit into her FAVORITE pair of old pre-steroid jeans!  So exciting!  I realized tonight that if she is wearing a large shirt you can't see her belly anymore.  This is helping with the activity level, I'm sure.  Oh, I am so glad!  Next month I will ask about the next decrease.  Currently she is on 3mgs a day.

Speech came into our room this morning for a consult, but she was so tired that we couldn't wake her.  Our doc wanted them to see if there was anything they could do to help her swallowing issues.  Being the skittish type, she was afraid of talking to them anyway.  I will have to psyche her up for it next month.  Another thing that was supposed to happen was an ultrasound of her hands.  This is more for the doctors benefit for now, but I suspect that it could have long-term benefits.  He is doing an informal study on ultrasound for Scleroderma hands.  I was unable to get specifics out of him, but hopefully that will also happen next month.  I would like to have the opportunity to help with some of the science involved; being a test patient is great when it's painless!  It may even help her one day.

We are talking much more formally around the house about going gluten and processed sugar-free.  We are going to try!  I expect that it will take quite some time to make the full change, but it may well be worth it.  We shall see!  I certainly want to try.  Since getting into making our own household cleaning products, I have been looking into making moisturizer, lip balm, shampoo, soap and laundry detergent.  I am hoping that this may help.  It can't hurt!  

Last thing to add is that we have a blog guest post up! The Arthritis National Research Foundation has made it their mission to highlight stories like this.  It made my day to see this made it up!  And I believe that is all.  I am so exhausted to I cannot recall anything else.  I am heading to bed.  Have a wonderful day ahead!

Saturday, October 27, 2012

May I point you elsewhere for a moment?

We arthritis people stick together.  I have made some lifetime relationships because of arthritis.  It started with blogs.  I found a few different blogs around the time that I started blogging.  I really didn't know anyone else yet.  What I didn't know then was that Florida had its own little JA group going on.  Thanks to one of my favorite AF employees, I was introduced to this group.  It was really cool that people that lived near to each other could easily find each other on one page!  We started meeting up.  Sometimes by accident, sometimes at planned events.  Actually, it was one of our Florida mom's that started me blogging.

 The week that Emily was diagnosed with Dermatomyositis, I logged onto a family computer at the hospital (I wasn't expecting our first visit to the new doctors to last six days) and I found a group invite on my Facebook page.  This led to a group of JA mom's all together on one real-time forum.  This was like an epiphany.  It was just a little bit before this that I met Parker's mom.  

They go through so much.  I "met" them online first, just after Parker was diagnosed.  A few years later and we've shared tears, had our kids (and some of our other favorite families kids) play together.  The kids support each other in ways that their well friends couldn't possibly.  Parker's mom has become an even larger advocate than me.  Their walk team at this past Arthritis Foundation walk raised over $10,000, and Parker had his favorite pro baseball player come hang out with him!  

Parker's mom asked a group of us not long ago what one thing we wanted people to know about Juvenile Arthritis.  Remember, there are over 100+ forms, and when I say JA, I am also referring to Juvenile Dermatomyositis, Lupus, Scleroderma, Mixed Connective Tissue Disease, Psoriatic Arthritis, Still's Disease, etc.  With input from so many different groups, this is the list that she came up with.  This explains why I don't make plans, why we always try to see the good in everything, some of the things that we all think about, worry about, and want other people to know.  We've all said these things, but when you post them all together in one place like that.... it's powerful.  This is one of the best pieces I have personally seen.  Please check it out.

Monday, October 22, 2012


I remembered tonight back to when Emily was first diagnosed.  It only took about a year to get her into a very brief but lovely sort of remission.  I spent all of my free time reading books on Juvenile Arthritis, and when that wasn't enough I found forums.  I remember people talking about connective tissue diseases, but I had no idea what those were, and I pretty much just assumed that they would never apply to us.  It was nice to be so naive.  I lurked on those Yahoo forums for quite some time, marveling at how some people had so much to deal with.  Around the same time I was told that siblings "couldn't" develop JA.

I feel blessed to be so much smarter now than I was back then, but it comes with a high cost.  We all faced head on the fact that Emily couldn't handle regular school anymore.  It was too much of a struggle for her.  She missed so much last year that it wasn't fair to make her go this year.  I wasn't sure that I could handle homeschooling but so far we all enjoy it.  One small victory is that October is almost over and it has passed without spending most of the month inpatient!  The last two October's were spent more in the hospital than home.  Every day we wonder when the next stay will be.  Emily is in a weird state right now.  She has been running around more, meaning that her muscles and joints are doing better, but the throat issues have been more pronounced.  She has been having more trouble swallowing pills, choking almost to the point of vomiting a few times.  And she told us the other night that she feels as though she will not live a long life.  How many ten-year old's have a grasp on mortality?

In the meantime, Zach is definitely breaking through Enbrel.  He has a spot popping up on his chest and another under his waistband.  He's had a small one on his arm, and some scales on his head.  He doesn't seem to be in pain, which is a relief.  For the most part, he's doing pretty well.  But that worries me a bit.  Chances are, it's just a flare because his meds are working anymore.

These are our days.  We cherish the good ones, we worry daily for what is around the corner, and we hope for the best.  There is always something that makes you worry, but we just try to get through day by day.    

Thursday, October 18, 2012

Has it really been THAT long???

While I've had much to say, I haven't had time to say it!  We are just so busy.

We went for Em's meds and doctor appointment 2-3 weeks ago.  Even though Zach was seen the month before, I asked the doctor about him  first.  I thought it was fair game since we spent 98% of Zach's appointment talking about Emily.  It appears as though he is breaking through Enbrel.  (Sigh)  I don't want to move to Humira.  I just don't.  I'm pretty sure that is what is going to happen, and if it does they will have to show me how to add Lidocaine to it.  We are currently doing Enbrel 3 times per week and he is still getting little patches, mostly on his scalp.  If that's as bad as it gets.... I can't complain.  Much.

Emily...  I don't know.  The appointment started off badly because, while I was sure that the CellCept was the cause of her headaches, he had never had a patient experience headaches.  Now, this is a drug that is primarily used for people with organ transplants, and that is what all of the data is on.  I researched a LOT.  What I found is that people with kidney issues did not generally have headaches but over half of the heart and liver transplant group did.  He still wasn't convinced.  He was pretty sure that she was possibly suffering from mild brain vasculitis.  He told me to give it two weeks and if the headache increased or did not resolve we would need to have an MRI/MRA run.  We also decided to try 3 CellCept in the morning and one at night instead of 2/2.  That has helped significantly.  We were supposed to change after a week, but we waited two.  So far, so good.  She did have an IViG reaction this time.  Her daily headache shot up to an 8, so it looks like we'll have to go back to overnight stays.  I really did not want to do that.

I'm not sure about the rest of her.  She is eating more than she was before starting CellCept, but she is also choking on her pills more.  Her appetite is better, so for that we are grateful.    I also suspect that Orencia will be going away in a month or two.  I'm hoping I am wrong on that.  It's such an easy medicine.  However, we have noticed more of her little disease rashes popping up, and I don't think that her joints are as controlled as they should be.  She is having more thumb and ankle issues, with the wrist and neck chiming in.  She still complains much less than you would think (except in therapy!).  That leaves me wondering sometimes.  She had a good couple of weeks there where she was constantly in the bath.  Usually that tells me that she is hurting.  Right now she has a sinus infection.  She went to bed just fine but woke up noticeably ill.  Knowing how she is and having family commitments today and tomorrow, we ran to the pediatrician today.  At least we are on it before it becomes huge.  We go back for her next appointment on October 29th.  We shall see what her rheumatologist says then.

Their great-grandmother passed away the other day- Kevin's grandmother.  She was 94.  Her wake is this evening and her funeral is tomorrow.  It certainly wasn't a surprise but it is still sad.  I worry more for her daughter.  She has been Grandma's primary caregiver since 1997 or 1998.  It's been a very long time.  And now she is free!  Rest in peace, Grandma Rosemary.   Oh, and my dad is having surgery on the 27th.  Plus they think he has asbestos "above his lungs".  That is likely mesothelioma, which is NOT good.  I was hoping they would investigate that before doing his artery surgery but no such luck.  Prayers for our family- close and extended- would be greatly appreciated, as always.  <3 p="p">
I promise a happier post on the homeschooling when I can sneak in another few minutes.  We ARE the house of science!  (I love it!!!!!)