Tuesday, May 29, 2012

Even the Best Laid Plans

Ever since SOJIA nothing has really gone the way I have planned it.  Parents don't plan to have a child suddenly become severely ill and so it kind of catches you off guard.  It's like being hit in the chest.  Knocks the wind out of you and even after you recover from it you still feel like you can't quite catch your breath.  Some days it's harder to breath then others.

We took Emily to a counselor today because there has been an emotional side to this illness.  She has an adjustment disorder that is being manifest through anxiety.  The doctor was very nice and helped us put this into words to better communicate it with her school, but it still gets me down.  I think because I remember that this is for the long run.  Once again I am reminded there is no magic pill, the medicine never ends, there is no cure.

Sometimes I feel like screaming to the world; this isn't fair.  We did everything right; this shouldn't be happening to our baby so make it stop.

That's putting the breathless feeling into words.

Thursday, May 24, 2012

How to manage a SUPER tantrum

'roid rage is a live and well at our home.

Most days Emily is very good at controlling it, but sometimes it is just too much for her.  I understand how they make her feel a lot better thanks to Take Me Home from the Oscars; Arthritis, Television and Fashion By: Christine Schwab.  In her book Christine talks how the steroids affected her and I can see some of those same things in Emily.  Trouble sleeping and anger are the big ones we deal with.

So last night when that angry monster got the better of her I employed some technique that I thought I'd share.

First; I have to recognize where the tantrum is coming from.  Part was her not getting her way, part was the steroids.  I blame the steroids but she could also just be frustrated with everything that has happened to her lately.  I know I am frustrated just watching this disease and all the side effects from the medicine.

Super tantrum stages:
1. Whinny, super whinny with a touch of "I'm about to scream in anger." in her voice.
2. Anger, screaming at the world.  Sometimes with words, sometimes just loud screaming.
3. It all comes off.  In the hospital she would throw the pillows off her bed, last night she threw her clothes.  This is the glorious half-way point.
4. Sad crying, no more screaming just tears and sometimes a; "I want my mommy".  This is where mom or dad swoops in to comfort her and tell her it's going to be OK.

So to handle this I put on my patient hat and wait out the first three stages.  My husband and I will acknowledge her anger and even empathize with her, but we make sure she knows how she is dealing with it is not acceptable.  She does not get what she wants.

At the last stage we swoop in and comfort her and talk about it.  Why did she feel so angry?  Why did she scream?  How can we handle this differently next time?

They have improved since we left the hospital, but any tantrum is not fun in my book.

Wednesday, May 23, 2012

Our daily dose of pain

Sometimes the daily injection goes well and sometimes it does not.  Last night it did not.  Emily tried to grab the needle twice.  I have to assume it is the anxiety about the pain that makes her do this because no rational child would try to grab something they know is very sharp and would hurt their hand as much as any other part of their body.

In this video the patient talks about having adult on-set Stills, same thing as SOJIA except in an adult, and he cringes before each Kineret injection.  He says it hurts if he touches the injection site and even three hours after it will still hurt him without toughing it. 

Emily screamed in anger after the shot last night.  It was painfully loud (I'm holding her during this).  Then I think about the fact I have to travel for work for two months very soon and my husband will be the one.  His wonderful sister is giving a week of her vacation time to come out and help when I first go, and it's only for two months, but I already know what she will be screaming; "I want my mommy!" and that will be so loud it already hurts my heart.

We've talked to the doctor about this and we could eventually try a weekly infusion instead, but that would be time in the hospital once a week.  It sure wouldn't hurt as bad so we may go that road, but we have to wait until I get back from my travel and Emily has come down more on the steroid dose.  Then there is still a chance she may relapse because the IV medicine could take up to a week to start working.  Then there is also the fact that Kineret is supposedly the best there is out there for SOJIA especially.  Would we be risking her health only to improve her quality of life slightly?

I'll leave you with something I read last night because it seems to fit (although I am sure Emily would not think this trial very "light" and to me is feels heavy too).

2 Corinthians 4: 17 
For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;

Tuesday, May 22, 2012

Scentsy party

Scentsy Party ID 87232069

One of Emily's wonderful Facebook friends (Emily's Facebook page) is having a virtual Scentsy party for us.  I always thought Scentsy products were fun and sweet smelling so if you need something sweet anyways go check out her page.

We'll use the money to help train Pearl.

Happy shopping. (Emily and I love ourselves some good shopping therapy too.)

$ 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.

Thursday, May 17, 2012

Tuesdays and Thursdays

I've decided to post here every Tuesday and Thursday and when I need a little extra writing therapy.

Emily had a mommy day yesterday.  I am in the military and in-between deployments so I figured it was a good way to ensure some quality time.  She loves to come to work with me so I brought her to work and then we left early to get her blood work done and go to a baseball game with my office.

Blood work was quick, but not painless.  Quick is good though, I hate sitting in a room full of what could be sick kids with my immune suppressed daughter waiting for some stranger to inflict more pain on her.  Unfortunately because the medicines can have so many adverse side effects and even the disease itself can harm her other organs (we saw it hit her heart and lungs already) every time we go see the Rhuematologist we also have to get labs done.

After labs we headed to the ball park.


I had called ahead of time to be sure they would allow stroller in the park because Emily can walk, but not far.  They do, however the nice gentleman I had explained her condition to failed to tell me that we would have to check it into Guest Services which is not close to our seats at all.  Then of course we had to walk up and down the stairs to get to the seat.  Emily didn't want to stay in the stroller, why would she when we had seats right behind third base, so I encouraged her to walk down the steps.  She did a good job and had a good time.  The thing I noticed was it is a lot of work to go to a game.  She made it up the steps twice, but only with my help and it's not just holding her hand I actually had to reach under her arms and allow her to put most of her weight on me as she stepped up.  She only made it two hours too.  By the 5th inning she had stopped talking and that's how I know how tired she is.  She gets so tired she won't even talk, just sit really still as if she is trying to conserve her energy.

There is a kind-of sort-of mass transit system in San Diego that's a red trolley so being from D.C. and knowing how awesome the metro is I figured we could just ride that home.  Emily enjoyed the "train ride", but that was also a ton of work.  There are only steps up to the car so I had to ask if we could use the handicap elevator to get into the car and the driver didn't believe me that we needed it.  He did end up letting us use it, but I don't think we'll ride it again.  I feel for any disabled person that depends on that for transportation. 

Last visit we had asked the doctor to sign a form allowing us to get a handicap placard for our car and she told us that we were no different then any other family with two children.  It doesn't feel that way and sure I want my daughter to get all better, but she can't walk far or fast so the stroller is our only option right now.  I'm so tired of being asked for help and told no.  On the one hand I understand the doctor doesn't want us limiting our daughter, but let's be real, this is a long process and she's not going to be running around anytime soon.

So far we've been told she's not sick enough to get a wish, not disabled enough for a dog and we don't need a handicap placard because we're just like other families with two kids.  If that's the case then why did the two year old at the ball park beat my five year old as we walked back to our seats?  If that's the case why does Emily get so tired that at times she doesn't have the energy to talk?  Perhaps I should invite the doctor to go to the next ball game with us and stay a day at our house and then tell us that.

Tuesday, May 15, 2012

Will you...



Awareness has been our biggest hurdle.  This not "just arthritis", it's not osteoarthritis that the elderly tend to get.  It's an autoimmune disease that is wreaking havoc on 300,000 children in the U.S. alone.

Will you share our story on your facebook page?  Will you like Emily's facebook page.  Help us tell others that kids get arthritis too.

https://www.facebook.com/ArthritisIntrospective#!/SystemicOnsetJIA

Monday, May 14, 2012

Side Effects


Every time I give Emily her medicine I think about the side effects.  Short and long term; I wonder if when she wants to have children someday if she will be able to.  A six year-old boy died last year from complications of all these medications so I worry about that too.  The thought that I could be hurting her as much as this nasty disease is always in my mind, but what choice do we have?

Prednisone
Get emergency medical help if you have any of these signs of an allergic reaction to prednisone: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have any of these serious side effects:
blurred vision, eye pain, or seeing halos around lights;
swelling, rapid weight gain, feeling short of breath;
severe depression, unusual thoughts or behavior, seizure (convulsions);
bloody or tarry stools, coughing up blood;
pancreatitis (severe pain in your upper stomach spreading to your back, nausea and vomiting, fast heart rate);
low potassium (confusion, uneven heart rate, extreme thirst, increased urination, leg discomfort, muscle weakness or limp feeling); or
dangerously high blood pressure (severe headache, blurred vision, buzzing in your ears, anxiety, confusion, chest pain, shortness of breath, uneven heartbeats, seizure).

Less serious prednisone side effects may include:
sleep problems (insomnia), mood changes;
acne, dry skin, thinning skin, bruising or discoloration;
slow wound healing;
increased sweating;
headache, dizziness, spinning sensation;
nausea, stomach pain, bloating; or
changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).

Cyclosporine
headache
diarrhea
heartburn
gas
increased hair growth on the face, arms, or back
growth of extra tissue on the gums
acne
flushing
uncontrollable shaking of a part of your body
burning or tingling in the hands, arms, feet, or legs
muscle or joint pain
cramps
pain or pressure in the face
ear problems
breast enlargement in men
depression
difficulty falling asleep or staying asleep

Some side effects can be serious. If you experience any of the following symptoms, or those listed in the IMPORTANT WARNING section, call your doctor immediately:
unusual bleeding or bruising
pale skin
yellowing of the skin or eyes
seizures
loss of consciousness
changes in behavior or mood
difficulty controlling body movements
changes in vision
confusion
rash
purple blotches on the skin
swelling of the hands, arms, feet, ankles, or lower legs

Taking cyclosporine or cyclosporine (modified) may increase the risk that you will develop an infection or cancer, especially lymphoma (cancer of a part of the immune system) or skin cancer.

Kineret
Injection Site Reaction
Upper Respiratory Tract Infections
Headache
Nausea
Diarrhea
Sinusitis  
Arthralgia
Flu Like Symptoms
Abdominal Pain

Kineret has been associated with an increased incidence of serious infections.

Friday, May 11, 2012

Hungry Monster

The steroids make Emily constantly hungry.

Emily's meal requests:
pumpkin pie
noodle soup with egg in it
mini pizza's

She will usually requests all three (not always in that order) for each meal.  The steroids cause tummy trouble so I am usually not picky about what she wants, but this super weight gain (15lbs in two weeks) has me worried.  So in an effort to curb her eating and add nutrients we require she has one yogurt for breakfast, 10 carrots for lunch and dinner and before any snack she has to have something healthy usually carrots or raisins.  She whines and complains about this and then I wonder why am I forcing more calories into her, because she eats what I require and then what she requests.

So some of you will say, force her to do what you want.  This is a girl who is capable of a four hour screaming tantrum on two doses of calming medicines.  Seriously I have to pick my battles here and an super tantrum over dinner is not where I want to go.  Really, should you force your kids to do anyhing.  I don't believe that is why we are hear on earth so I have requirements and then teach.  We do a lot of talking about healthy eating and encourage daily excersise. 

That is another reason I want a companion dog.  Someone to encourage her to get up and move.  We'll see, we did find one place that will give us a dog and help with funding it, we just need the doctor to sign off on it.

Wednesday, May 9, 2012

Exhaustion

Out of sheer exhaustion I let Emily sleep in my bed last night.  I just am not able to function well waking up 3 to 4 times a night, getting up at 0530 for my work out, working all day and then getting back home to clean, cook dinner and spend time with both children.  I am pooped.  If I am honest too I don't clean much in the afternoons and dinner is so low key I'm not sure you can count it for much effort on my part.

It's kind of ironic because now we will have to work on getting our son to sleep in his own bed to make room for his sister so I can get some sleep.  The irony comes from the fact that we worked to get Emily out of our bed when our son was born. 

If we want to have any more children we will need a larger bed.  Which brings me to another point that bothers me.  Before SOJIA my husband and I were ready and wanting another child.  I was looking forward to coming home from deployment and starting an adventure leading to a third child.  Having a child who is so sick and will be for a long time sure cured that desire.  Eventually we will probably have another child, but I thought it might be a possibility this month and completely freaked out.  Probably because of the exhaustion; up three times with Emily, once with Thomas and let's see with a newborn that is about four to five  more times a night.  I would never sleep.

I feel guilty that I got upset about the possibility, especially now that it's not.  Derek handled it much better then I and was even excited about the possibility so maybe in a few months we can consider it.  Once we are better at managing SOJIA we can think about it again.  I'm not getting any younger and I think there is at least one more member of our family waiting to join us.  I'll have to talk myself into it.

Tuesday, May 8, 2012

Unconventional

I want to get one of these for Emily.  There are actually two types of specially trained dogs that I believe would really help her.  One is a service dog to help her move around and pick things up from the ground, the other is a therapy dog which would be her constant companion, especially during the injections, and would be trained to obey her and go with her to the playground to play.

They cost a lot of money and apparently juvenile arthritis is not debilitating enough to qualify for help in getting one.  I haven't given up yet though.  One organization told me she qualifies, but we'd have to raise the funds for them.  Not ideal with working full-time, one sick child and one going through the terrible-twos adding something else to my schedule doesn't seem like it would work either.  We'll have to talk about it some more.

So far the only other thing that helps Emily is the water therapy which of course we pay for ourselves because insurance doesn't cover unconventional things like that or therapy dogs.  Oh, but they would cover a thousand dollar stroller/wheelchair.  Let's not get her up and moving, let's confine her. 

On a positive note, Emily went back to her dance class yesterday.  I was of course very worried it would be an epic failure.  All that movement, especially the up and down, I was afraid it might discourage instead of encourage.  She really wanted to though and my husband and I have said from the beginning of all this that we would not limit her, she would have to set her own limits.  So we took her, I went in the class for the first half (all in uniform and everything), because she was anxious and I was not going to let the very perky teacher brush her off.  After the first 30 minutes the teacher could see what her limitations were and Emily seemed to be more comfortable so I left to watch from the door (plus they changed from their tap shoes to their ballet slippers-tap shoes are very slippery and I didn't want any broken bones).  Emily seemed to really enjoy it.  She tried everything, even just a little except for the jumping, and even did a forward roll with a lot of help from the teacher.  She also got down and laid on her belly which she refused to do in PT.  So I was happy about that.  Of course afterward she is exhausted so we took it easy the rest of the day, but I was happy to see her enjoy herself.

I hope to make a lot of progress this next month because I will be leaving for two months for work again very soon and don't know how much progress if any will be made while I am gone.  Derek is great with the kids, but Emily get's really upset when I leave and with this nasty disease I don't expect she will be willing to do much more then wait for me to get home.

Monday, May 7, 2012

Moon Face

These photos were taken within 6 months of each other.  The before picture was taken right before my deployment.  I wanted to show how drastically the steroids have affected Emily.  I guess they call it "moon face", but I bet if you didn't know any better you might first think the chubby girl in the stroller was just fat and lazy.  People stare a lot now, I just hate thinking they are judging us and Emily.  So I make a new effort now not to judge; I give everyone the benefit of the doubt because you can't judge a book by it's cover.

Friday, May 4, 2012

Thrush

WHAT IS THRUSH? Thrush is the term we use to describe an overgrowth of yeast in a baby's mouth. This yeast, called candida, normally lives within our mouth, intestines, and genital area. It thrives in moist, warm environments. Occasionally this yeast is allowed to overgrow so much it becomes visible as white patches. The Rhuematologist warned us we may see some thrush because of steroids. Emily had a super case when she was an infant. Seems like it's back and here to stay. I hate these steroids.

Don't Quit

I like to read this poem three times when things feel at their worst.

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When funds are low and the debts are high,
And you want to smile but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won if he'd stuck it out.
Don't give up, though the pace seems slow -
You may succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late, when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out -
The silver tint of the clouds of doubt,
And you never can tell how close you are -
It may be near when it seems afar;
So stick to the fight when you're hardest hit -
It's when things seem worst that you mustn't quit.

Author Unknown

Thursday, May 3, 2012

All Alone

There are some days that I feel all alone in this.  Even my husband and I don't always see eye to eye on how we should proceed.  This is so new, scary and frustrating for both of us and neither of us really know what will help.

Sometimes I walk down the medicine isles in the grocery store just looking.  I think I am looking for that magic pill, the box that screams out "Cure Your Arthritis NOW!".  I have yet to find it.

My approach is exhausting.  I want to do everything that could possibly help and I want to have started it yesterday.  My husband likes to pace us.  His way is probably the best.  Three doctor's appointments this week and three therapy appointments is a lot for all of us.  I hate it.  On the other hand Kindergarten is only three and a half months away!

I have to keep reminding myself that there is no magic pill.  There is no cure.  SOJIA is here to stay.  I'll never like it, but I'll need to learn to work with it. 

Our real job is helping Emily learn how to live with it.

Wednesday, May 2, 2012

Twinkle, Twinkle Little Star

Night is not my favorite time of the day.  Emily does not sleep through the night and honestly never really did.  So I have a hard time believing parents who tell me their six week old sleeps through the night.  Really?  Neither of my kids ever have.  My two year old is getting better and there are some nights he does go all night, but even that took two years. 

Emily hates nights too.  I am not sure if it's the disease, or maybe the medicine, or perhaps just this whole traumatic experience, but she will cry during the night and usually wakes up to get a new ice pack for her injection site and then another time to go to the bathroom.  If I am on the top of my game I try to include both things in one wake up.  Usually I am not.  Usually I am lucky if I can be and loving mother at those times.  Not that I am mean to my child, but I am most definitely not happy to be up that late/early.

The worst part is when she just wakes up crying.  It must be some form of a night terror because she won't tell us what is wrong or respond to us.  So I just lay next to her waiting for her to wake up more or stop and tell me whats wrong.  The thing about the crying that makes it hard to deal with, for me, is that I can't take away what is making her cry.  I can't stop giving her the injections (lately those have been very hard for her to take) and I can't make this nasty disease go away.

Tuesday, May 1, 2012

Macrophage Activation Syndrome

I failed to mention that one main reason Emily was in the hospital for so long was a diagnosis of Macrophage Activation Syndrome or MAS.  Mainly because it is incredibly difficult to understand let alone explain.  This is from Arthritis Today, Kids Get Arthritis Too Volume 11 Issue 4 By Mary Anne Dunkin.

As I understand it the cells that normally kill damaged cell or viruses get over activated and begin killing normal, healthy cells. 

What Is MAS?
Although not wide­ly recognized, MAS is a relatively common and potentially serious complication of rheumatic diseases in chil­dren, particularly systemic JIA, lupus and vasculitis, says Randy Q. Cron, MD, PhD, who helped diagnose Jacie’s condition and started treatment that may well have saved her life. The condition affects up to half of children with systemic JIA; as many as many as 7 percent to 10 percent of children with systemic JIA will develop a case severe enough to require hospitalization, he says.
The problem occurs when the immune system gets ramped up to fight an infection but then fails to slow back down when infec­tion has been eliminated, says Dr. Cron, director of the UAB Division of Pediatric Rheumatology. Normally, once an infection has been eliminated, white cells called CD8 T cells kill off the cells – typically macro­phages or dendritic cells – that stimulate the immune system to fight invaders. In MAS, a defect in this mechanism sends the immune system into overdrive, producing proteins, called cytokines, including tumor necrosis factor, interferon gamma and interleukin-1.
“When these proteins are in excess, you get what is called a cytokine storm,” says Dr. Cron. “This leads to this pro­longed fever but also leads to cells eating up other cells in the body. Macrophages go around engulfing other cells.”
As a result, blood cell counts fall, lead­ing to a problem known as pancytope­nia. In the worst cases, organs fail, which leads to death if not treated immediately.
New Findings Offer Understanding and Hope
For a doctor not familiar with MAS, it can be mistaken as septicemia, a life-threatening blood infection. But scien­tists have discovered the syndrome shares features with a genetic disorder called familial haemophagocytic lymphohis­tiocytosis (FHLH). Triggered by infec­tion during the first year of life, FHLH is almost always fatal unless the child receives a bone marrow transplant, says Dr. Cron.
To have FHLH, children must receive two mutated copies of one of the critical genes involved in cell lysis (killing), he says. Research in the past few years has revealed that children with MAS often have only one mutant copy of these same genes (e.g., perforin, MUNC 13-4, etc.), suggesting that the syndrome is actu­ally a milder form of FHLH, he says.
While this finding offers understand­ing that could eventually lead to improved therapies for both conditions, another find­ing with more immediate applications is that the biologic agent anakinra (Kiner­et) – which inhibits interleukin-1 (IL-1), a key cytokine produced in both system­ic JIA and MAS – is a rapid and effec­tive component of treatment for it.
“Typically, we use a combination of high-dose corticosteroids, cyclospo­rine and anakinra,” says Dr. Cron. “We are usually able to control it. Anakin­ra, at least for our group, has revolu­tionized the care for these kids.”
What Parents Need to Know – and Do
Although MAS can occur at any time during the course of rheumatic disease, research shows it commonly occurs short­ly after or even before or around the time of diagnosis. Parents should be aware of the condition because it can come on suddenly and become life-threat­ening very quickly, says Dr. Cron.
The main symptom that parents need to watch for is a high fever, he says. “Unlike the typical systemic JIA fever that occurs once (usually in the after­noon) or sometimes twice daily and comes back down, MAS tends to be a more continuous high-grade fever.”
Another sign of danger is the child is not as alert or as arousable, because MAS can affect the central nervous sys­tem, says Dr. Cron. Jaundice (yellow skin) is a sign that comes later, indicat­ing the condition is affecting the liver.
Parents who notice these symptoms should get their child to a doctor as soon as possible. Although there are numer­ous specialized tests for helping to diag­nose MAS, he says one simple and widely available blood test, a serum ferritin lev­el, is a good place to start. The test, which measures the amount of iron-contain­ing protein in the blood, is almost always highly elevated in children with MAS. “Other conditions can also elevate your fer­ritin, but usually not to the degree that it does in patients with MAS,” he says.
If your child is in the emergency room or sees a doctor who is unfamiliar with MAS, he recommends asking for a ferritin test. “There is no downside and it is remark­ably sensitive for picking this up,” he says.
Most of all, he says, be your child’s advocate. Be persistent in pursing the causes of your child’s symptoms.

Doctors

Before SoJIA a doctor appointment with a sick child was a relief.  I would leave with a prescription and knowledge about why my child felt ill.

Now we spend four times as long with the doctor every two weeks and I leave feeling hopeless.  Emily doesn't feel well, she's not herself and I am sure the medicine is partly to blame, but all the doctor can tell us is she doesn't know why she is feeling that way.  Her feritin is "jumping" around according to the doctor so while we may (if she gives me a call this afternoon) be able to slowly start dropping the steroid dosage Emily will always be taking Cyclosporene and Kineret.  I knew before about the Kineret, but to find out about the Cyclosporene was a bit depressing. 

I do hope we can start going down on the steroids today.  It will still be baby steps, reducing one milliliter every two weeks.  Sigh.  Emily takes two five milliliter doses a day, that's 20 weeks until we are off them completely.  I hate the steroids the most.  Sure they saved her life, but at the same time I feel like they are transforming her.  She rides in a stroller a lot and we are getting stares more and more because her face has ballooned out.  I can almost hear the judgmental thoughts behinds those stares.  I've got my new pamphlet printed out though and just need to remember to bring it along and hand it out.  After all, May is arthritis awareness month.