JIA Update

It's been about 7 months since Mara's knee injections for her arthritis, and her first check up in December showed no signs of an active disease.  She will complain that her knee or ankle hurts every once in awhile, but there's never a second mention of it or crying.  She did have a limping and crying episode in February.  She had been running around a gym for awhile when we noticed her limping, and she did complain of ankle pain.  It happened to be bedtime, and things did spiral out of control that night.  I really thought that was going to be the beginning of things going quickly downhill, but she didn't mention anything about it the next morning. 

We headed to Iowa City last week for her second 3 month check up.  This report wasn't the news we were expecting.  Her rheumatologist found inflammation in one knee, possible inflammation in one wrist, and one of her ankles was warm which indicates active disease.  She suggested we start her on oral medication immediately.  I was shocked and became emotional.  I don't think either of us were prepared for that because we didn't even have a clue that she had any symptoms.  The doctor stepped out of the room for a couple minutes, so we could discuss the medication option with each other.  A few minutes later she returned, and we told her we're very nervous about starting the medication.  We said we'd like to try a gluten-free diet first to see if that has any effect on the inflammation.  We had already discussed diet changes with her at another appointment, and she wasn't supportive of it at all.  And from what I've read, most rheumatologists aren't.  So of course she tried to share how hard a gluten free diet is, and that many who try it also eliminate dairy, and since we're eliminating foods we should think about eliminating night shade plants, too.  I felt like I was being attacked.  She may not have been meaning to come across so cold and unattached, but I felt like I had to defend my opinions and choices and prove I really am a good mom just trying to make the best choices for my daughter.  There is a lot of evidence to support diet changes, gluten free diets, etc. but maybe not enough science in it for her.  Who knows.  It was just a rotten experience overall.  I'm sure she assumed we'd start medication right away, so that's why another staff member showed up soon after to explain to us how to administer the medication and answer questions we had about it.  She went ahead and instructed us anyway because we do have the option of getting the prescription at any time now.  The rheumatologist suggested we try the diet for 3 months, and then we'll go back for a check. 

I won't get into all the details of the medicine, but it's called Methotrexate.  It's used for treating cancer, and if you Google it you'll see why we're nervous about giving it to our 3-year-old.  She would be getting a very low dose of the medication once a week.  The most common side effects are nausea and vomiting which should getting better the longer she's on it.  Other side effects include a weakened immune system, liver damage, and hair loss.  She liver would be monitored through a blood test every 3 months.  She wouldn't be able to receive any live vaccinations while on the medication.  This medication has been used for a long time with arthritis patients and has been very successful.  I get very emotional when I think about putting that into her body.

Lance and I had discussed the gluten free diet in the beginning and agreed that it was definitely an option if it came down to it.  I was very nervous about going gluten free in the beginning because it was something new that I didn't know much about.  Over the last couple of months, I've done a lot of reading, researching, and connecting with others who are doing gluten free diets.  I decided I needed to start experimenting in the kitchen to ease some of my fears.  The kids and I went gluten free for 5 straight days, so my fears about being able to do it were gone.  But we decided that we wanted to know if the diet was actually working, and we wouldn't know unless we waited to try it with her once she had a flare up. 

The first couple of days after her appointment were extremely rough for me.  This is definitely the hardest thing as a parent that I've gone through so far. I felt helpless, overwhelmed, scared, alone, and the list goes on  What am I going to do?  How can I get rid of the inflammation?  What if I make the wrong decision?  I felt a strong urge to try and take control of the situation myself, and I felt a huge weight of responsibility on my shoulders.  I had resorted to my old way of thinking before I made the choice to give all my burdens to God.  Oh how quickly I fell backwards but oh how quickly God picked me right up.  That's how He rolls, and I'm so thankful for that.  Through constant prayer and reading His Word, God has been revealing so many things to me. 

I've always prayed for a miracle, that God would just heal her completely.  But I know that my will isn't always His will.  So of course I still prayer for a miracle, but my daily prayer is that God would lead us into making the best choices for Mara.  This last week I've been praying that if there are alternative treatment options that we need to consider, that He show me those.  My eyes have been peeled for those opportunities.  I've "met" a couple new online friends (friends of friends) that have been very helpful with ideas and suggestions based on their experiences with diet changes .  Another friend brought over a book with some home remedy options for inflammation.  I came across an article about food allergies causing inflammation in arthritis patients.  I scheduled an appointment to have her tested for food allergies which was supposed to happen in 3 weeks, but we actually got in this week.  The results came back early, and this morning they called and said all her blood tests were negative.  The nurse informed me that that was good news, but I was honestly a bit disappointed.  My thought was that if she did have a food allergy, then that would be the answer to the inflammation. 

She really wanted to see what they did to her back for the skin test, so we took a picture so she could see it.

 

As of today, we're continuing the gluten free diet and also no night shade plants (basically eliminating potatoes, tomatoes, and peppers which can cause inflammation).  We feel like it's worth a try for the next 3 months.  We've also been wrapping her knee in a hot cloth soaked in raw, unpasteurized apple cider vinegar 2 times a day, and trying to hide a teaspoon of it in smoothies or yogurt.  This home remedy has worked to reduce inflammation for some people.  I've also ordered some essentials oils that have also worked for reducing inflammation for others. 

We try to wrap her knee while she's eating or doing something like playing the iPad.

 

Sunday in church we sang Your Love Never Fails by the Newsboys.  What a great reminder.



There may be pain in the night
But joy comes in the morning
And when the oceans rage
I don't have to be afraid
Because I know that You love me
Your love never fails
The wind is strong and the water's deep
But I'm not alone here in these open seas
Cause Your love never fails

You make all things work together for my good.

 

When I feel afraid, I remind myself that I don't have to be because I know He loves me and makes all things work together for my good.  Thanks for your continued prayers!