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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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Having the Relapsing MS Talk with My Kids LEMTRADA patient blogger: Kimberly By Kimberly, Texas Gal, Born and Raised • February 19, 2019

LEMTRADA (alemtuzumab) patient Kimberly with her child

How do I talk to my kids about my MS? I actually had to think about that for a second. I was diagnosed with relapsing multiple sclerosis (RMS) at age 19, so that means by the time my first child was born, I had already been dealing with relapsing MS for seven years.

There I was, a young mom raising three kids. In the beginning, we were just trying to stay afloat—I honestly was too busy to even think about having a relapse. Thankfully when I did have one, my parents were there to step in. 

I love my parents and I am blessed to have them, but sometimes they can get a little carried away. On one occasion when my kids spent the night at their house, we found that my parents had turned their entire backyard into an inflatable water park! At the time I was just happy I had my mom and dad there to help, and I was grateful that they enjoyed spending time with their grandchildren. But, I could see that this had the potential to become a real problem. The kids were starting to expect these over-the-top productions. We had to nip this in the bud.

It was when my oldest son was seven that I had to explain what was wrong with mommy and why she was so tired lately. We decided to just tell them the basics and keep it really simple: I had relapsing MS, and that means that from time to time, mom gets tired and needs to rest until I feel better. Sometimes, Mi-Mi and Paw-Paw would come by to help, but for the most part it would just be mom and dad. While I rested, they could still play and run around. But I could not always take them to baseball practice or riding horses. I had to stay home and get better.

I thought they understood. I really did, until the time I just needed to lay down. They mistook that as an invitation for them to ALL climb on the sofa right next to me. Looking back it was all very sweet. However, at the time, I was really not in the mood to watch their cartoons—there is only so much kiddie TV a mom can take!

I continued to push through, trying to be the world’s greatest mom and every now and then I would have a relapse. It would take a few days to rest and recover. And this relapse-rest cycle went on for a few years until my very understanding husband finally decided enough was enough. It was time to give the kids more details about Mom and her relapsing multiple sclerosis.   

We turned to my neurologist for advice on the best way to talk to young kids. He was great! He shared some brief, helpful talking points that mainly explained a little more about fatigue: what it is, and how it can occur at any time. We talked about better ways to handle the heat. More importantly, my neurologist helped me to understand that while it is against my nature to just rest, it is important that I do it. He said my kids would understand—they probably wanted to have a little rest too.

We sat the kids down and talked to them more about relapsing MS. Wonder of wonders, wouldn’t you know—they listened! At the end of it, I turned to my husband and said, “Well, that went better than I expected.” 

I should have known that it would not be that easy. Oh, the talk worked—for a little while. It was all going fine, until ... I remember I was making my oldest son a chocolate cake. And while I was pulling the cake out of oven, boom—it hit me like a ton of bricks. Fatigue struck again. But I still had mom stuff to do—take one kid to swim practice and another to horse-riding lessons.

Luckily, my husband was there to take over. He sent me to bed and took the kids to their activities. My oldest stayed behind to keep eye on me. I thought to myself, “Aww, my baby loves me and wants to make sure I am okay.”  Nope. He just wanted to know if I was going to make the ganache frosting because he really wanted a piece of cake.

I mustered up whatever energy I had and gave him my best “mom glare.” That must have done it, because he went back to the kitchen. I heard bowls clanking around, and the sound of an electric mixer—he was making frosting! Of course, I was afraid of the mess I’d find, but at the same time, I was really proud of him. He finally understood that he could do things on his own while Mom rested. Success!

Kimberly's son stepped in to make frosting so she could rest.

Have you had “the talk” with your children about relapsing MS?  I’d love to know how you did.

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