eye twitching, sore ankles, shaking hands

I hate to tell you how to raise your kid, but Dawn, you have to MAKE him rest. Rest is IMPERATIVE to getting better. I know it’s hard to make him & I know it sucks that when he wants to play football everyday & run around in gym. But he’s going to keep getting fatigued & having pains unless you set some boundaries.

You need to find a program that fits him. If he’s running around outside playing football everyday, why not tell him that he can play it every other day and on the off days take him to do something fun that doesn’t require him to run around.

All of the symptoms that you described that Kevin is having are pretty close to what Emily gets if she over does it. I’ve learned what she can & can’t do & it is hard because they look normal & they CAN do those things….they just aren’t good for them to do all at once.

Regular excercise is important but there HAS to be a line drawn for them. He’s only a kid so he can’t draw that line for himself. As his mother you need to set it up for him. Explain to him that you don’t want him to hurt or be exhausted so you’re going to set up some new rules.

We only let Emily stay up an hour later on Friday OR Saturday night, it’s usually Saturday & she doesn’t get both nights. She only gets 4 days a week of HARD play (like at the playground running around) and the rest of the week we keep it low key, like taking my mom’s dog for a walk, just kicking the soccer ball back & forth, or a bit of swimming in the summer.

I also make sure that everyday she has a rest period where she is just laying around. That’s when she has her TV time & she NEEDS it or she starts hurting.

I don’t think that you are a bad mom or that you are neglecting Kevin. I want to make that VERY clear. But you both have to learn what his limits are. He’s not the average kid anymore. He has a disease. He needs rest in order to get better. Trust me on this. It isn’t going to do him any good to keep pushing himself.

Kelly

dawn,

ditto kelly. you said it yourself, after rest he does better. excluding getting rid the the bad gbs antibodies, rest is the most important thing. not enough rest means a longer recovery time at best. of course the decision of what to do is his & yours. take care. be well.

gene gbs 8-99
in numbers there is strength

Dawn,

You have been so sweet to me but I have to say I agree with the prior posts. Dell does not know what it’s like to run and jump so I can’t say how a 10 year old will react to all of this but I guess with time, he will get used to it.

If he is continuing to have symptoms, I believe he still needs the ivig.

Hope things get better, I am sorry for what you are all going through. Dell seems to be doing better after the 5 day steriods.

Lori

Hi Dawn,
It’s soooo hard to slow down, we feel and look like we can do it all just like before but we can’t. It took me having a major relapse to figure that out and I was 42 at the time. I still get down when I think “oh I can help out with that or go bowling with you” and then think about it and call back with my tail between my legs and apologize. I just have had to learn to say “no.” It’s hard, so don’t be hard on yourself just remember when Kevie gets disappointed he will feel better later. My daughter often gets mad at me and later gives me hugs and tells me she loves me forever. Being a mom is hard enough but having a child with GBS must be really tough, so any time you need an ear you know where to come.

Joyce