What is Pediatric MS?

According to the Cleveland Clinic:

Multiple sclerosis (MS) is a central nervous system disorder. This means it affects the brain and spinal cord. It is an autoimmune disease as it is inflammatory—meaning that white blood cells, which protect against infection, enter the nervous system and cause damage. The harm is done because the myelin sheath, the protective coating for nerves, is stripped off by the antibodies produced by the immune system. (This is called demyelination.) MS is a long-term disease that can happen to anyone.

Pediatric MS is multiple sclerosis that begins in children or teens. About 98% have relapsing-remitting MS, versus 84% of adults with MS. This means that symptoms come and go (relapse and remit). When symptoms are gone, the disease is still able to progress. This condition may also be called pediatric-onset multiple sclerosis (POMS), early-onset MS, or juvenile MS. Relapses seem to happen more often in children and teens. This group appears to recover from the neurologic disability more quickly but are at increased risk of cognitive difficulties that can affect school work.

For more information from the Cleveland Clinic site, please refer to:

https://my.clevelandclinic.org/health/diseases/17337-pediatric-multiple-sclerosis

Kids and teens, this is for you…

We at Mr Oscar Monkey/Oscar the MS Monkey, believe that children deserve to know the facts! Most kids will make up their own version of what they think is MS if we don’t give them the real truth. They know something is wrong and they just want information.

In a nutshell, MS “gnaws” away at that protective coating around our nerves (myelin sheath). Nerves connect every part of our body to our brain. That means, our legs, arms, eyes, etc. If you picture a cord on a lamp, there is a coating over the wire to keep the electricity inside. When a mouse “gnaws” on that cord, some of the electricity “leaks” out of the cord (it doesn’t really leak, but it can shock you!) and makes it hard for the lamp to have a good connection to the power outlet - the lamp flickers. We consider MS to be that little mouse, or ugly buglie, that “gnaws” away that protection, allowing the energy in that nerve to “leak” a little between the brain and the other end of the nerve.

When MS attacks the nerve like this, your body goes to work to fix the “leak” AND it tries to find new ways for that message to get through - without having to go through the “leak.” In other words, your body is working really hard to make things better again and this can be very exhausting! Do you feel really exhausted with your MS? Now you know why!

What do Kids and Teens want to know about MS?

  • Researchers continue to look for the answer to this question. There are many ideas being tested today. In addition, there are many medications being tested. Someday, we hope there will be a better answer to this question.

  • There is not a cure for MS. There are medications available to help keep MS from worsening. As research continues, those medications have gotten better and better at preventing relapses.

  • Your MS will be with you forever, BUT there are things you can do to try to keep it from being a bother. Be sure to do your research, talk to MS specialists, eat healthy, exercise, maintain a positive outlook, and go to Oscar’s Teen Camp!

  • MS is not considered a fatal diagnosis.

  • The MRI machine is loud and a small space. Many kids and teens choose to have a little sedative when they have their MRI, so they can relax and not be so inclined to wiggle. Many kids and teens also choose to have their MRI without a sedative. This is a personal choice to discuss with the child, doctor and parent.
    Often, the doctor will request that a dye be given in the vein so they can see different images on the MRI. In this case, there will be a needle-poke to start the IV.

  • The MRI CANNOT read your thoughts! You may ask the doctor to show you the pictures they got of your brain when you visit with the doctor after your MRI.

  • NO! Exercise has been shown to be very effective in maintaining movement and balance. With this in mind, remember your body may tire more easily. You may not be able to continue playing as hard as you played before, but you can still play! Since many people have a form of MS that gets worse at times and better at other times, you may find that with your sports, as well. Some days it will be hard to run that mile, other days, you will run 2 with no trouble!

    Take time to really get to know your body. Listen when it tells you to take a break so you will be able to do more fun stuff later.