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Jul 18

Finding the right combination

After trying several different medications and combinations of medications we have now changed up Mackenzie’s meds once again.

At our last check up at U of M we stopped the Naproxen that we had tried again (the first time it spiked her liver function counts too high so we had to stop it) in hopes that this time her body would be able to handle it. It didn’t. The poor girl had terrible diarrhea from the medication so we took her off from it. And unfortunately her arthritis was really rearing it’s ugly head….she had a lot of pain, swelling, and fatigue. So the next step was to try a medication called Plaquenil. The problem with this medication is that it only comes in pill form. Have you ever tried to get a three year old to swallow a pill? Needless to say that didn’t work out.

Now we are on to our latest option, an option we had really hoped to avoid. As of two weeks ago, she is on a biologic medication called Enbrel. Some may have heard of this medication as it is regularly advertised on television with Phil Mickelson as a spokesperson. Enbrel (as all biologics are) is an immune system blocker. This now means that instead of one shot a week, she receives three shots a week over two different days. Every Tuesday she receives a shot of her Enbrel and every Friday she receives two shots, one of her Enbrel and the other is her Methotrexate that she has been on since November.

The negatives of this medication….basically Mackenzie no longer has an immune system. This is why we really hoped we wouldn’t have to go to a medication this strong (that and we really didn’t want to have to give her anymore shots). A three year old with no immune system…..not a good combination. And when we normally go to the doctor for her and start a new medication they really don’t talk about the side effects. Not so for this one. They rattled off a whole long list of them including blood problems (low blood counts resulting in less ability to fight infections, trouble stopping bleeding, and easily bruising), high rate of infection, especially respiratory and an increased risk of lymphoma and other cancers, especially for her because she is a child and she has an autoimmune disorder. Because of the highly increased risk of infection we now have to start sending out a text message or e-mail message to family just prior to family gatherings to see if anyone is feeling ill or has any type of illness (cough, cold, sore throat, sniffles, etc.). If anyone is feeling under the weather or thinks they are coming down with something we will not attend the event/gathering. It’s kind of hard to think of her possibly missing these things but the alternative of seeing her in pain in a much worse option. Also if she is sick on a day when she is supposed to receive her Enbrel injection she can’t have it because her body needs what little fighting ability it has to fight the infection and the injection will prevent that. She will be starting preschool in the fall and we already know that she will be prone to catching a lot of different illnesses there as well and will probably miss a bit of school, but it’s something she is really looking forward to so we will keep her enrolled.

The positive of this medication….it already appears to be helping put her arthritis in check. Her swollen lumps on the backs of her hands are almost gone again. She is moving better and having better days. And most of all in some cases this medication has been known to push children with arthritis in to remission which is the ultimate goal. So fingers crossed that this happens for her.

All in all she is doing remarkably well for a three year old having to cope with such a huge burden. She takes her weekly injections like a champ. She takes her daily oral medications with a smile. And even through the depression, frustration, and fatigue she still manages to smile, play, grow, laugh, learn, and help her baby sister learn to walk. She is true hero to us!