Leg pain for Emily

    • Anonymous
      August 11, 2008 at 2:36 pm

      I know I’m taking a break from the forums but something happened that was weird this morning & I’d like to get some feedback on it.

      Emily woke up at about 8am crying for me. She said that she had shooting pains in her legs. In was from her knees down & they were all over – not just isolated to one spot. Usually when she has pains they are in her calves. She said that they felt a bit better when she pulled her legs close to her body.

      I gave her some Motrin & rubbed her legs for a few minutes. She went back to sleep & woke up 2 hours later just fine.

      Something similar happened 1 other time. Unfortunately it happened while she was at school so I didn’t see it for myself. From what Emily & the secretary said she had pains all over her legs & arms & she kept pulling them in close to her body. They didn’t last long – maybe 3 minutes. She was fine after that.

      Emily did stay up late last night watching the Olympics with me. We went to the flea market & the mall yesterday. The day before that we went to the farmer’s market & the day before that we went on a longer than usual bike ride.

      I’m not sure if that could be the cause of her problems though. She did just finish up her 1st season of T-ball. She played twice a week & didn’t really have any problems with her legs then. It seems weird that a few days of walking could cause such pain.

      Does anyone else have these kinds of pains or have any ideas on what they are from?

      It’s really hard to get good descriptions out of her…she is still only 6 & she’s a drama queen on top of it.

      She gets her IVIG next week.


    • August 11, 2008 at 3:17 pm

      Hi friend!
      I say try measuring her and see if a growth spurt has started. i know you are leary of the growth spurt issue because initially Emily’s symptoms were dismissed as growing pains, but it is worth a look see. Also, the mall, flea market, bike, farmers market was alot in the last few days, or there is the every three week thing. See ya later woman!!!
      Dawn Kevies mom

    • Anonymous
      August 11, 2008 at 3:44 pm

      I’d say if it went away, it may just be some fatigue and that’s how she expresses it. Maybe a little restless leg syndrome, which I had quite a bit as a child. Didn’t know what it was then though. And Dr. Dawn may be right with the growth spurt thing! Hadn’t thought about that one! Gabrielle

    • Anonymous
      August 11, 2008 at 4:37 pm

      i don’t know if this helps but– when i do more than average– walking, shopping, etc– and feel that i have fatigued my legs/body– later in the day, usually once resting/reclining, i experience pain as you described in emily… like electrical zingers that are quite disconcerting, if not painful. my guess is a 6 yr old’s vocabulary would use the word “hurt,” while i would say– disturbing, disconcerting, etc. it must be scary for her…

      it scares me too.

      i also get relief from pulling my knees to my mid-section, breathing through it and trying to relax. i for one can’t be stroked during such a moment, to prickly– but the comfort aspect for emily may out weigh and prickliness…

      i don’t know if any of what i am saying makes good sense– just wanted you to know i have experienced it. also, my neurologist told me that some of that– zingers, itching, etc– may be healing. which kind of makes sense when you consider how wound itch and pinch as they heal.

      hope you and emily are well–

      warmly, alice

    • Anonymous
      August 11, 2008 at 5:28 pm

      This sounds like how my legs feel when I’ve over done it – like yesterday marching around like I knew what I was doing. I get those shooting pains at night when my muscles have done more than they are used to. The sports side of my family attributes it to lactic acid build up, I’m inclined to believe them as I know how painful that can be having been diagnosed with it in the past. It hurts and if the build up is bad enough it feels like there are little crystals in your muscles. Try having her drink more water during the day to see if that helps and then stretch at night before going to sleep to release any tense muscles. 🙂

    • Anonymous
      August 12, 2008 at 8:16 am


      Does she say it is a pain that travels ? When I get the leg pain, it is sharp and dull at the same time…it will be on the top of my foot then go to the toe then to the calf then to the shin…it lasts only a second in each place but is shooting all over and hurts pretty bad.

      Poor little thing…I hope it IS growing pains. My little man gets his right behind the knee.

      keep us posted,

    • Anonymous
      August 12, 2008 at 8:35 am

      When I am on my legs alot I get the same issues. They hurt too! Very painful experience. She might have to limit her activities for a while too. I call them my over did it days and usually pay the price.
      I used to love going to flea markets and farmer’s markets. In PA they had one that the Amish used to run and they had some of the neatest things. Where I live now! It’s the pitts! No more fun at the fleas! LOL!
      Hope your daughter feels better soon. I feel for her because she is just too young to be having this stuff. I sure hope she gets well soon.

    • Anonymous
      August 12, 2008 at 11:24 am

      She had the leg pains last night as well at bedtime. At first I thought it might have been a stall technique…she’s quite good at those. I gave her some Motrin, just in case, and sent her to bed.

      She did stretch last night before bedtime. Maybe that played a part in it? I did notice that she wasn’t drinking as much water as I would like. I’ll be pushing it more today.

      Then she woke up at 5am crying from a nightmare. While I was in her room she asked me why her legs keep hurting. She said that they weren’t hurting as bad as they had the morning before. I gave her some Motrin again & she went back to sleep. This morning she’s perfectly fine. She’s currently dancing around the living room, singing & jumping up & down. I think she’s playing with a ball too.

      She was fine all day yesterday until bedtime…which is what made me suspicious of her stalling. We’ve had a hard time over the last few weeks getting her into bed. If it’s not one thing it’s another. She does know that we’ll respond to her if she says she’s having pains though. I know she’s faked them before…little stinker. She got me good the other night with the “I’m really hungry – I need a bedtime snack”. I gave her some string cheese & before I knew it she was sitting on my lap & we were watching the Olympics.

      Last month I think she had some leg pains the week before her IVIG. I attributed those to swimming or something. Hmmmm….it’s making me think. I’m considering asking the dr to up her dose from 20 grams to maybe 30. We’ll see though…much to think about & observe. I won’t ask for the increase unless I really feel it’s necessary.

      I’m going to keep a daily record of what she does & when she has the pains. She gets her IVIG next Monday & she sees the neuro next Tuesday.

      She does say that the pain shoots up & down. She says it hurts all over. I asked her if it felt like “strawberries” (which is how she described the neuropathy pain before) and she said no – It’s just pain.

      Thanks all.