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.

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.

My Emily

Last week I took Emily to get her haircut.  As she watched her reflection in the mirror I felt like I could see pain on her face.  She was not happy with the way she looked.  Later that day she asked me if her face would ever look the way it did before she got sick.  The swelling is what I consider severe, but we can't get it to go down until we get off all of the steroids.  With 7ml still each day getting to 0 seems like an eternity away.

We have had to be mindful of her self image now.  We no longer tell her she is a big girl, we say she is growing up.  I like to tell her how wonderful motherhood and marriage is, but now I just talk about marriage.  I realize that these treatments are so new and so life altering they may very well take away her ability to ever have biological children and I have no doubt that may be very painful for her one day.

The doctor seems to feel that it's ok for kids to be on the medicine because they aren't aware of how it changes them physically, but Emily is very aware and an intelligent child.  I wish we had a doctor who had a child dealing with this,  not because I wish it on someone else, but because there are so many daily living aspects to this disease that the doctors just don't get; such as the physical appearance and extreme exhaustion.

See, the thing is; you don't really understand what it's like until you live with the disease.  None of us understand except Emily.  You really can't fully understand what it's like to parent a child with a chronic illness until you have one. 

"It's just arthritis."

My husband and I made this video because we had heard the phrase; "it's just arthritis" too many times. It's a good synopsis of what we have be dealing with in the past four months.

I made it because there are days when my mind tries to trick me; Emily seems perfectly fine and I wonder if the medicine isn't doing more harm then good.  Then I look at the pictures and video and remember back to the days in the hospital when I couldn't count how many doctors we talked in a matter of minutes and the two days when a doctor actually sat outside Emily's room and told me to come and get them if "anything changed". 

I also made it because I wanted to show Emily that she isn't the only child with arthritis and so we have watched video after video on You Tube made by parents watching this nasty disease take hold of their children and change their lives.

Rheumatologist

We had our bi-weekly visit with Emily's Rheumatologist and my suspicions were right.  She's been more tired then usual and I had a feeling as we were weaning down on the steroids the disease was becoming more active and labs confirmed this.

There are two different inflammation markers the doctor looks at; one tells if MAS is coming back and one tells us about SOJIA and how active the disease itself is. 

It's now I have to remind myself there is no cure only control through medication.  The medication she is on right now is Prednisone, Cyclosporine, and Kineret.  Kineret is the long term medicine that is supposed to control everything and eventual be the only medicine she takes.  Prednisone is like a band aid medicine, it's what she got in the hospital because she was so very sick.  Prednisone reduced the inflammation quickly and controls it very well, but the side effects are pretty nasty (think best case two hip replacements eventually) and can be life threatening if taken too long so we have to get her off it as quickly as possible. 

We found out yesterday her D-dimer, white blood cell count and platelet counts were all elevated which means SOJIA is still with her and becoming more active as we wean down on the steroids.  Good news was her feritin levels were low, not normal, but not 24,000.  Normal is around 60, Emily's now is a little above 100.  In the hospital with MAS they were 24,000.  So anyways MAS is under control; SOJIA not so much.

I'm worried it's not working as well as we wanted it to, but happy we can try a different medicine.  This one is given via IV in the hospital twice a month.  They can also do labs at the same time so if the IV goes in well that means just two pokes a month...hallelujah!  There is a huge emotional toll that is being paid and if we can reduce that cost just a bit I will take it.  Let's just hope this new medicine works.

$ The cost of a chronic disease $

I can be honest and say we have good insurance that covers most of our medical costs.  The difficulty comes from the fact that unconventional things are what help JIA kids most.  We have Emily taking physical Therapy twice a week which she hates and insurance covers and swim therapy once a week which she loves and insurance doesn't cover.  We wanted to get a YMCA membership because they have an indoor pool, but since we choose to keep our children at home and out of day care we can't afford it and can't apply for the YMCA scholarship because both parents don't work. 

There is another JIA girl who I heard takes dance class six days a week to help keep the stiffness at bay.  Movement does help, but of course insurance only care if it's a medical condition.  So they will pay for a wheelchair if we want to just give up and let JIA win.  Since we don't just want to let JIA win we have sacrificed other things.  We were considering buying a second car when Emily started kindergarten, now we won't.  We'll be inconvenienced a bit and save the money we would pay on insurance, maintenance and a car payment so we can continue water therapy and buy food for Emily's new friend Pearl.

On top of the unconventional, but successful treatments, we have to pay to park each time we go to physical therapy or the doctor and then most of the appointments are at least two hours if not more which usually cuts into a meal so we either rush home and pop something in the microwave while hungry, irritable children growl or stop to get something to eat and reduce the stress load a bit.  That all costs extra money.  It's not something you think about. 

When Emily was in the hospital they fed her, but not us.  Sometimes I would just eat her leftovers because she wasn't eating much.  Most days, except on Saturday and Sunday, the Rhonald McDonald house would feed us, but when Emily was in the ICU I would have to leave her to get food.  I ran back and forth and lost weight not eating as much.  One or two days in the hospital is no big deal, but 57 and the meal bills add up.

We also have the co-pays for her medicines and then we have to pay for the alcohol wipes, syringes, gauze and band aides.  Emily doesn't like the feeling of the alcohol wipes so since it's already very traumatic we bought some gauze to dry her off before we give her the injection, but that's expensive and we may stop doing that and have to have her suck it up and deal with the wetness for a few seconds.  We hate doing that, but what can you do?  We don't go on family vacations, we hardly travel, my husband and I never go on dates any more and unless we're at the doctor appointment during a meal we never eat out.  We don't buy new movies or go to the movies, the last time my husband or myself bought new clothes was over a year ago. 

JIA has not only taken some of my daughter's mobility it has also taken our money.

My list

I now have a list of things that increasingly frustrate me.

Never say to a JIA parent:
1. It's just arthritis.  - Are you freaking kidding me?  My daughter can barely walk, can't go up steps and can't get up after sitting on the floor.  It is not "just" Arthritis.  It is an Autoimmune Disease that is devastating my child's entire body.

2. It's not a disability. - See above.

3.  She's perfectly normal. - See above.

4. Oh, so she has osteoarthritis.  No, no she does  not.  If you are confused google Still's Disease, that's an AKA for this nasty disease and will possible explain things better to you.

5. Have you tried probiotics? - I can't even think of a neutral response for this one so I kept my mouth closed.  There is no cure for Juvenile Arthritis of any variety, do not give helpful tips to parents who know more about this disease then most doctors. If there was anything that could help I gaurantee I would be investing in stock in the company that made that wonder drug.

Never do:
1. Stare. - Why do people, especially adults, insist on staring at my sweet girl.  Yesterday, after leaving the doctor's office, Emily was discussing her disease and this elderly woman heard our coversation and bagan gauking at my daughter.  Serriously this woman followed us through the parking lot staring until we went our seperate was.