28 May

This morning Noah started asking me about Tysabri. I’m sure that I have told him about it before, but he’s 5. So I brought it down to a level that he could understand.

I told him that everybody has an army in there body. This army fights off things like colds. Whenever there is something in your body that doesn’t belong the army fights them off and fixes you up.

Unfortunately with me, the army has started to attack my brain like it’s an enemy. So the medicine that I take puts up a wall around my brain so that the army can’t get in.

(Now he wants to know why is it dangerous?)

Well, the army can’t get in but the bad things still can. So if something bad gets into my brain there is no army to fight them off. That would be bad.

I think that he understood. His conclusion was that I should take a different medicine.

That’s when I decided that the conversation was about to get complicated so I just smiled and agreed.


Posted by on May 28, 2013 in Life with MS



8 responses to “Kids

  1. meglewellyn

    May 31, 2013 at 12:18 pm

    šŸ™‚ I think that was a good explanation! Although my kids are older now, I remember giving answers like that. My definition of what MS was involved comparing my spinal cord (which is where most of the lesions are for me) to an electrical cord on a lamp that someone had cut the rubber coating on. The electricity might, or might NOT make it up the cord to turn on the light, just never know. To this day, I sometimes hear them using that to explain it to a friend:) Might NOT be accurate BUT satisfied them.

    • Janet DiFolco

      May 31, 2013 at 12:24 pm

      That’s a good one. I tried something like that in the beginning but only my older son understood. The little one has more issues than him. He has made the reference before that I’m “sick”. So I just keep trying to keep things light with him.

  2. binkysbuttons

    June 2, 2013 at 11:15 am

    I was showing my 5 year old my last mri picture. which showed my brain leisons and the spots looked to her like swiss cheese. (sometimes i wish i could be in her little brain) and i tried to correct her that they weren’t holes in my brain …. but she said that swiss cheese sucked any ways went on with her business… she just doesn;t get it, yet.

    • Janet DiFolco

      June 2, 2013 at 4:58 pm

      Yeah I’ve shown Noah my MRIs before and he just gets excited that he can see my brain. šŸ™‚

      • binkysbuttons

        June 2, 2013 at 5:07 pm

        Kids work in funny ways….. hi I should induce myself , im Jamie, I found your blog during research on Tysabri. Which I want to be switched to.

      • Janet DiFolco

        June 2, 2013 at 5:20 pm

        Hi Jamie. I am a big fan of Tysabri. As long as I stay JC virus free it is defiantly me drug of choice. No side effects, I don’t have to give myself shots anymore, and I don’t have to try to remember to take a pill 2xs a day. Plus it gives me an excuse to just sit and read my book for at least 2 hours a month. šŸ™‚

      • binkysbuttons

        June 2, 2013 at 7:19 pm

        oh lordy – 2 hours to myself ? i have no idea what that feels like… I failed at avonex and have relapsed more then I’m comfortable with while on Copaxone, So tomorrow i see a new Neuro and will be bring up Tysabri. Its got to be worth a shot. I’m terrible at pills so that option is already out so really fingers crossed he will agree with them …. Fingers crossed, something HAS GOT to give and soon šŸ™‚

      • Janet DiFolco

        June 2, 2013 at 8:23 pm

        I hope that your Neuro is good with it. I used to be on Copaxone. Every MRI was worse than the last. That’s why I switched. Good luck!


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