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LEMTRADA is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS). Because of its risks, LEMTRADA is generally used in people who have tried 2 or more MS medicines that have not worked well enough. It is not known if LEMTRADA is safe and effective for use in children under 17 years of age.

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The Balancing Act: Children and Treatment LEMTRADA patient blogger: Kimberly By Kimberly, Texas Gal, Born and Raised • May 9, 2017

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First, I hear the pounding of feet above me. Next, I hear the sound of the tightening of the trigger—the trigger of the blaster of the hard-hitting foam arrows. That is followed by the sound of rapid-fire, whizzing styrofoam bullets. Each time a bullet connects with the wall, I hear Ping. Ping. Ping. I brace myself—wait for it—wait for it… “MOOOOOOOOOOOOOOOOM!!!!!!” My daughter screams. “THEY. WON’T. LEAVE. ME. ALONE!”

I take a deep breath; so much for my downtime moment. It was lovely—all five minutes of it. 

Being a parent is hard. And adding relapsing MS to the equation takes parenting to a different level. You are responsible for the needs of your children, but you also have to make sure that you take care of yourself. You know…so that you can take care of your children. You precariously stand on a balance beam trying to juggle all of the parental balls of afterschool sports, homework, dinner, listening to their day, and school volunteering. And like every parent, you need to take time for yourself. You need to rest.

Yet, sometimes, when you have relapsing MS, your kids don’t get that memo. They know something is wrong, but they don’t understand. They’re wondering what’s going on and why you’re resting so much. So what do you do? Depending on their ages, be honest, stay positive, and build a bridge for understanding.

When I knew I was going to start my treatment, I gave my kids a basic overview of what was going to happen. I kept it really simple so I wouldn’t overwhelm or scare them. I told them that I was going to be in treatment all day. I told them that when I got home each day, I may or may not be tired, but that is okay. At first they didn’t understand. I could see the confusion and apprehension in their faces.

They didn’t get it until I used the analogy of their standardized testing week at school. I told them to remember what they felt like when they got home from sitting still and taking tests all day. To remember how they did not want to talk or answer any of my questions. That they just wanted to rest.  

Well, Mom will feel the same way. When I get home from my treatment, I’ll need to rest and I probably won’t feel like answering lots of questions. When it was put that way, they understood.

However, my little sugar dumplings reminded me that when they finished testing, there was a school-wide party, complete with pizza, music, and cookie cake. Not really the response I was expecting. But after a brief pause, I honestly thought that was not a bad idea.

So, when I finished my treatment course, we had pizza and cookie cake. Correction. They had pizza and cookie cake while playing video games, while I lay on the sofa. Now, if you were to ask them what they remember about my treatments, they will say, “Isn’t that when we got pizza and a cookie cake?” 

Yes, positive attitude from the kids. Score! 

Of course, I cannot control the outcome of my treatment, but I can control my outlook, so I always stay positive. When it comes to talking about treatment, I keep the explanation simple, and I look for ways to connect everything together.

Be well, my friends!

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