Bad leg pain for Emily

Hi Kelly,

I understand your concern, its awful ‘waiting’ for something to happen, specially when you know what the first symptoms are.

Please, please dont take this the wrong way, I am a mother too, and I know my kids inside out (I know when my son is getting croup AGAIN, and when my daughter was getting ear infection AGAIN – even before they start complaining, I know the signs). So im just asking 😮 …… is it exactly the same pain as she has had before …. reason I’m asking is that my daughter, from about age 4 was plagued by awful growing pains in her legs. She would lay in bed crying, and we would try and rub it to ease the pain – she wouldnt even want to walk. I would often think that it couldnt be growing pains as it was far too severe. However, at school she always seemed fine and active. She always said it felt like it came from the bone, and the docs said it was growing pains. But I was always so alarmed at the tremendous pain she was in. At 15, she seldom has it now, but it does rear its head every noooow and then. So, Im not second guessing you, i just wanted to let you know what Kirsty went through with growing pains.

Kellly,
I have found that my IVIG sometimes is more like 5 days before I can tell a change. My first 2-3 days I feel like I have the flu with extra aches and fatigue.
Could her leg pains be from growing? My kids would complain their legs hurt too and then they would shoot up.
I hope this isn’t a relaspe for her. Its been so nice to hear that “our” kids were doing well.
I will keep you and your family in my thoughts and prayers.

Hi emiliy’s mom,

From a PT stand point…how about stretching her legs?while she is lying down or standing..if standing have her put the good leg forward…and bend it…push into the wall keeping the ball leg straight…..if that doesnt work..u can always put the hurt leg on the curb…like a step up…use the angle to stretch out the calf…..lying down…u can take the hurt legt…cup the heel of the foot and thetoes into your arm…and lean in to the foot..so that the leg is stretched totally.
Another thing is…is she eating bananas? Good source of potassium….can help with that cramping.

Maria T. future PT..hoping to make a difference[QUOTE=Emily’s_mom]Hi all!

Emily turned 6 last week & started 1st grade so she’s going to school all day this year. At the same time we lowered her IVIG to once every 2 weeks (from once every 10 days). Ever since she started school she’s been complaining that her legs hurt.

Her eye was fine going the 14 days & that is usually the 1st to go in a CIDP relapse. I just don’t know what to do about this leg pain. It’s the back of her calves on both legs. She’s been walking around the house on her tippy toes all the time again. She can’t hop on her left foot anymore but still can with her right. HOWEVER, when she’s at school it’s completely different. She runs around on all 3 recesses just fine, participates in gym class (twice a week), and I saw her jumping up & down Thursday morning with some boys.

I’m trying to chalk it up to her pushing herself at school & suffering at home. I’m desperately trying not to freak out about this but it’s so reminiscent of when all of this 1st started 2 years ago right after she started preschool. The leg pain came first & it was only at home – at school she was fine. It started shortly after she started school & we explained it away as her being in school & on her feet more often. By Christmas 2005 her eye was paralyzed & 2 days later she was in the hospital with hardly being able to move anything.

I don’t know what I’m asking for by posting this. I’m just so worried that the CIDP has decided not to start with the eye now & we’re starting all over again. I can’t tell people in my real life about this because I don’t want to worry them. My husband worries so much about her already & I know he couldn’t handle me expressing concern like this.

We’ve been doing so well since going back to the 1st neuro again. I was hoping that she was getting better & that soon she could get IVIG once a month like every one else. I suppose I’ll just wait & see what happens. She had an IVIG treatment 2 days ago & that didn’t change the leg pain at all. I guess if it was a relapse that the IVIG would have helped a bit, right?

Thanks for listening.
Kelly[/QUOTE]

Kelly,

My fiance Ben also has really bad pain in his calves. Lyrica has really helped him with it. He’s also been taking Mirapex because at the same time the calf pain started, he also started having spasms and cramping in his legs. He had a really severe case of GBS that almost took his life and was recently diagnosed with post-GBS.

Hope this helps!

Shannon

Hi Kelly: The worst residual pain I have is in my thighs and calves. The only relief I get from it is to take neurontin and oxycodone, so it can really be bad. I suspect, if it is not growing pains, that it is residual pain increased by Emily’s activity at school. I know you don’t want to give her heavy duty meds, so the next best thing I found for my pain was lying down, sometimes for hours at a time. Hard to get a six year old to lie down for that long, but increasing her rest at home to compensate for her activity at school might help. Jeff

Hi Kelly,

Kevie complains about hamstring and calve pain when he does too much. I agree, they are trying to look as normal as possible at school and push themselves. Kevin does the same thing and pays for it at night.

To relieve the pain we do some stretches,rubs and a heating pad. Since we have been re, re diagnosed w/ aidp again, I guess the pains would fall under the residual category. If they are wrong and we have cidp, I guess we should be doing ivig. Being that rest helps him and he is usually good the nest morn. I guess we will go with residuals.

What I was wondering, is that since the eye is usually a first indicator to you, could the legs just be residuals if you will? Is it possible to have residuals of some sort with cidp as with aidp? Does the pain stay consistently? Does it get better and worsen with over doing it. I guess it would be considered a current demylienation if it was continual and progressive. Does the doc feel that the eye is the indicator of more need for ivig? Does he think that the legs could just be worse than the eyes now? Since you no longer notice a complete relief of pain immediatelet with ivig, maybe it is just overuse with school and all? Maybe you can just stay on the 1x every 14 days schedule for a while to test it out and if need be, go back to the 10 day schedule.

I feel your pain of wanting to stretch out the treatments. But I always tell myself and Kevin that at least we know that there is medicine that we can take if need be.

My prayers are with you guys, try not to let this set back put a damper on the joy you expressed only a couple of weeks ago! You were so happy and hopeful sounding with all of the great things happening in your families life. I hope the beauty of fall in Michigan and all the new things happening in your new home can make you happy again.

Love,
Dawn

Kelly,

I was suprised to log onto the forums and find your problem. I’m so sorry to hear about her pain. I pray it’s “growing” pains and not the cidp.

We will remember her in our prayers.

Love, Lori

Kelly,
When she’s at school all day and doing all the physical activity that comes with it, like recess, she may be getting dehydrated. I know that my muscles (mostly soles of feet) tend to cramp if I’m not getting enough water. If she can’t tolerate bananas, you might try a little Gatorade — it’s got potassium and other electrolytes, and they make it in decent flavors now. My son loves it if he’s been running around in the heat and sweating a lot (he’s 11). There’s also a pediatric drink, Pedialialyte, but it’s mainly for rehydrating quickly after diarrhea and vomiting, so it may be too strong.

I know that, for me, overdoing it — which usually means extended shopping trips — can make my legs really ache. I usually wind up spending a day sitting/laying down to recover. I wouldn’t call it bad pain, but perhaps to a 6 year old, it would be perceived as awful.

I hope with all the advice everyone has offered, you can find a way to help her.

Caryn