flare

With autoimmune arthritis (I specify that because osteoarthritis is completely different) symptoms can come and go.  When symptoms are at the worst they are said to be flaring.  It's not something we have really ever experienced until this weekend.

Emily had been off steroids a little over two weeks when we started to notice her rash come back and stay.  It has already been around (I say it is mocking me), but this time it was different because it was more prominent and itchy.

At her last infusion I noticed her lab numbers were not looking good; d-dimer and fertin where on the rise and hemoglobin was taking a dip, all classic symptoms.  So I called the Rheumatologist and asked if the rash and these labs meant that MAS was back.  MAS is macrophage activation syndrome (I wrote about it here) and it is scary because there is a 20% mortality rate associated with it if not treated.  About ten years ago MAS didn’t even have a name; it was a fever that killed because there was no treatment so it’s not something we like.

Sure enough we get a call back, it was MAS.  Hello steroids, it hasn’t been long enough.  We started her again on 2mls per day, not too bad, but enough to invite ‘roid rage back and increase her energy.  It wasn’t enough though, four days later the rash was worse and she was crying it was so itchy…ugh.  So we were told to raise the steroids to 3mls twice a day.  Not that bad, not the 10mls we were on, but it feels like we took one step forward (ending steroids) and two back (6mls a day was months ago).

It seems to be working.  Emily is her old self; she had not been acting right at all this past weekend so I knew something was up. 

Flares are common with this nasty disease and they can happen anytime.  The one thing I find assuring is that for the most part the worst part of the disease is the onset.  So hopefully Emily will never be that sick again.

First day of school! First day of School! First day of school!

Emily’s first day of school was this week and boy was it rough, on me.  I did not like how it felt to realize she will be depending on others to learn and grow now as well and from me and my husband.  I’m not a big fan of outside influences in the world we live in today.

Aside from how I felt, Emily really seemed to enjoy it.  She even had her teacher reading from Taking Arthritis to School.  We know because we had to interrupt the reading to pick her up for her infusion. 

First day of kindergarten + Actemera infusion = bed time at 5:30 p.m.

I’m still trying to decide if I was more upset about my sweet girl growing up and moving on or because there are so many germs and ways to get hurt at school.  What if someone comes to school with the Chicken Pox or Strep Throat or a cold?  Too many worries.

Her teacher was very nice though and after we discussed our concerns with her suggested we write a note home to all the parents telling them about Emily’s suppressed immune system. We did.  How much of an impact it had we may never know although if Emily does not come down with any viruses this year we will credit the letter with success and try again next year for sure.

Emily does enjoy school, but we can tell it is hard on her.  She comes home exhausted, usually immediately falls asleep and then doesn’t want to go back.  Since she’s been sick she doesn’t like doing things that require a lot of work so school and swimming lessons are on the top of her list right now. We’ve taken it upon ourselves as her parents to push her to work though; it’s part of learning to live with this nasty disease.  Even though she wakes up stiff and in pain she’s got to move past it to live so we are trying to teach her how to cope (warm baths and extra early bed times) and how to suck it up (sometimes life just hurts). 

It’s a learning experience for me.  I hate negative people and believe anything is possible, but trying to instill this belief into a five year old is not very easy, especially when she learned earlier this year that there are things you just can’t do when your body attacks itself, at least you can’t do them until the medicine kicks in.

Our new rule for this school year is every time Emily says “I can’t.” she has to stop and say “I can” five times. We’ll teach her she can even if she doesn’t want us to.

 

Here’s to the rest of the school year being good and Emily getting strong enough to take on first grade.

Steroids

So even through Emily's inflammation numbers still show as "high" on her blood work results all is well and she will be completely off steroids this week yay!

I thought I would take the time to show you how much the steroids have impacted Emily's appearance.  For a five year old that's a big thing.  She has asked me if she will ever look the way she did before getting sick and I hope the swelling goes away, but we just don't know.  Steroids are a life saver of an SOJIA child.  They work fast and well so we very well may have to use them again sometime in the future.

April 22, 2012 (Emily was diagnosed in March 2012) so this is right after her discharge from the hospital

May 6, 2012


June 6, 2012


The Mormon Battalion is a free place Emily loves to visit (panning for gold is a favorite) and we always get a picture when we go there so this shows how much she changed in two months.  Weight wise she was discharged at 30lbs (about the 15% percentile) and by June she was 50lbs.  She nearly doubled her weight in two months; I can't imagine.  Even after nine months of pregnancy I have never doubled my weight and to have done it only two months.  Clothes size she went from a 4T to a 10. 

The good news is that she has started losing weight.  It's coming off slowly, but we've been told that is normal as her activity level increases and her appetite and the steroids go down.  She's now only 48lbs and in a size 6 and definitely more active.



I'll do another post like this is a few months to show how coming off steroids effects her as well.  That's one question I had when this all started; will the steroids changes be permanent?

A little bit scary

Today we realized Emily will have completely weaned off her steroids before her next Rheumatology appointment.  That first brought feelings of excitement and relief.  Then I got scared because every time we have tried to come off steroids something horrible has happened.  Then I remind myself that was at the beginning and things have been going very well lately so I take a deep breath and build up my faith a bit.

The truth about it is though that this nasty disease is just all around scary.  Whenever a new SOJIA parent message me on Emily's facebook page I remember all the emotions that go along with suddenly having a very ill child in the family.

Once you come so close to losing a child you realize there is no guarantee on life.  Each new day is a gift that you cherish, but each new change is a little bit scary too.

Sometimes we almost forget...

Since I've been home there have been a few times that I have almost forgotten about SOJIA.  That is a big step in the right direction.  I don't know we'll ever really forget, but watching Emily smile a lot more and just be a happy child and enjoy life is lovely. 

She is noticing her progress as well.  The other day she asked me to watch her jump.  That was her goal for physical therapy; to "jump again" and she was so pleased with herself when she did it.  Last night she wanted to ride her scooter to the play ground.  Usually going to the play ground means we have to push her there and back (a total of two blocks), but last night she rode/walked her scooter the whole way there.

There are just so many things we took for granted before SOJIA.  It's nice to see Emily happy again and enjoying her childhood.  My one wish for her now is to just love life no matter what happens, enjoy being alive and the thrill each new day brings with it.

smaller battles

Emily's tootsy

One of the scariest aspects of SOJIA is that the medicine controlling it also suppresses Emily's immune system.  I read posts and blogs of different families dealing with this and there is always one thing that plagues the child.  Emily has been battling ingrown toenails.  This will be her second case of both big toes getting infected.  Normally you could just wait it out, but with a weak immune system she goes right on antibiotics and if those don't work they increase the dose.  After two weeks we're now going to go to a pediatric podiatrist to see what they can do.  There are lots of small battles to fight with SOJIA.

Infusion Time

When Emily was originally in the hospital for SOJIA it was difficult for her to deal with.  As you can imagine the emotional toll we all paid was very high, but Emily's more so then any of us.  Every once and a while during those 60 days I would try to cheer her up and encourage her to get up and move with a visit to the gift shop. 

Shopping therapy. 

On one trip Emily picked out this tiny little ladybug, so cute, but so easily lost.  Her original one did get lost so for her infusion today daddy took her back to the gift shop and she picked out two cute little guys to replace the first one.  Her request was for a ladybug and a turtle.

We believe it's the tiny things that make a big difference.  We want her to love life and so when she wants to replace her tiny lost ladybug we do our best to make that happen.  Life is great, even with SOJIA, and we want her to believe that too.