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Jun 06

Our new journey…

We are quickly coming up to the one year anniversary of our start down a road we never thought we would be on……the journey with Arthritis.

Almost one year ago our daughter Mackenzie suddenly started to not feel good. It began just after her cousin Josh’s graduation party. The day of the party was hot and Mackenzie didn’t have nearly enough to drink that day and became dehydrated. The dehydration led to a horrible case of constipation that took several weeks to clear up.

Then just about the time the constipation started to clear up, she started having other problems. Most notably she was getting slower and slower getting out of bed in the morning and started to develop large lumps on the backs of her hands. The first lump appeared on her left hand and she started having trouble using her hand especially first thing in the morning. So of course we took her in to have it checked.

Jeff took her and the PA she saw did both an exam and an x-ray. The x-ray showed no sign of a break and the PA was a bit baffled and figured she must have just injured it at some point and as a just in case prescribed and antibiotic.

When the lump didn’t clear up and we were getting reports from daycare that they were seeing the same thing we went back to the Dr. That led to our first attempt at an MRI of her hand to see what could be found. On August 31, 2012 Mackenzie went in to Hackley Hospital here in Muskegon to have her MRI. Unfortunately the sedative they gave her didn’t take and they were unable to complete the test. So our next stop was to Helen DeVos Children’s Hospital on September 12, 2012. This time the test was successful.

But something we had been noticing between the two tests was that a second lump was developing on Mackenzie’s right hand. We were also noticing and so were the care givers and daycare that Mackenzie was slowly starting to retreat from physical activities. She no longer climbed the stairs, at least not without assistance. She no longer played with the other children at daycare especially if they were running, Mackenzie would just climb up in a chair and look at a book.

When the results came back from the MRI we were told it was bursitis and that it would just go away in time. Well that answer just didn’t sit right with me. After all, how could it be something that was just going to go away….it had been getting bigger and a new lump had formed on her other hand. Also from what I had learned about bursitis, it shouldn’t cause a person to lose ability with their affected area, in Mackenzie’s case her hand.

Finally after a little more pushing and prodding the Dr. agreed to make a referral to a Pediatric Rheumatologist to check for Arthritis. We were warned that the wait time to get in to the Pediatric Rheumatologist was months out and to just be prepared. Fortunately we were already acquainted with a local Rheumatologist and asked to have a referral appointment made with him just to speed up the process if possible.

So on October 12, 2012 we went to see Dr. Hylland. By the time we met with Dr. Hylland, Mackenzie had two very pronounced lumps on the backs of her hands, she was no longer able to sleep through the night, she woke up in the mornings unable to open her hands up from the fists they had curled into at night while she was sleeping, and she had pretty much completely withdrawn from any physical activities both at daycare and at home. Mackenzie loved Dr. Hylland from the start which made the exam much easier. And at the end of an hour long appointment we were given the news that Mackenzie did in fact have Arthritis, Juvenile Idiopathic Arthritis.

Because Dr. Hylland only saw a handful of pediatric patients in a year he said that he wanted to further refer us on to U of M for Mackenzie’s care. Along with the referral to the Dr.’s at U of M, Mackenzie also had to visit with an Ophthalmologist to have her checked for a condition called iritis that sometimes occurs in children with arthritis. She also needed to have some blood work done to check for the Rh factor and some other indicators plus to get a base line number for her liver functions as she was going to be starting a prescription for Naproxen and in some cases patients have a hard time processing the medication and it causes increased liver counts so regular blood work would be required.

Have you ever taken a two year for a blood draw…..it’s hard! And this was just the beginning.

Having been given the official diagnosis Jeff and I knew it was time to start making some decisions given the extent of what we knew Mackenzie’s care was going to require….doctor appointments, eye appointments, physical therapy, blood work, etc. So on October 31, 2012 I said good bye to my job at Columbian Logistics and became a stay at home Mom.

On November 15, 2012 Jeff and I took Mackenzie for her first visit to U of M. Here we met a wonderful team that will continue to direct Mackenzie’s care through this journey. We spent four hours at Mott Children’s Hospital in the Rheumatology Department. At the end of the day we walked away knowing for the next four to five years we would be giving Mackenzie a weekly injection of a medication called Methotrexate (an immune suppressant) and a high powered pain reliever to help her sleep through the night.

Since that visit seven months ago we have been back to U of M twice, once with good results and once with so so results. We have been successfully giving Mackenzie her weekly injections and have stopped the Naproxen and are currently on to trying a new medication called Plaquenil. The problem with this latest medication is that it is a horribly bitter pill that she can’t chew so she needs to learn to swallow a pill….at three years old. That is not going well.

The lumps are back on her hands after having been gone for several months while she was taking a steroid. We had to stop the steroid in March because long term use has long term side effects that we and her Dr.’s did not want to risk. Today Mackenzie is not sleeping soundly and is need of some relief. Hoping that we can either figure this Plaquenil out or come up with an alternative.

It’s been a long year’s journey and as I said earlier…..it’s just beginning……