Re: Leg Pain in 4 year old

[Guest guest]

Hi Amy,

My daughter (8) has CMT 2 and has dealt with leg pain from a very young age,

pretty much from the time she could put it in words. Before she was even

diagnosed with CMT we used to tell her pediatrician about the pain & were told

it was just growing pains. She would wake up in the night crying because of the

pain, she almost always would say her ankles hurt, but other times it was just

general pains in her lower legs.

Now it is mostly an issue on days when she has exerted herself

too much, wearing the braces & having some PT exercises has helped.

I don't like to give her medicine when it isn't necessary (plus I

don't want her to be dependent on them at such a young age) but I will give her

kids ibuprofen when I know she's been extremely active before the pain sets in.

It is also not uncommon for her to go to bed with ice packs for her legs, which

really seems to help. We have the soft gel types that live in the freezer & she

can help herself to them any time she needs them. Of course I have to remember

to go fetch them from her bed from time to time or they all wind up there! :}

Also one thing that seems to help my daughter is to give her a little leg

massage. I don't know if it really helps or simply distracts her from the pain

a little so she can move on, but I know for me a little massage is never a bad

thing.

Neither my partner or I have CMT so it is difficult for us to truly

understand the level of pain she is experiencing. Add to that her

young age & inability to accurately describe the feelings & many times I feel

like I'm just flying blind trying to help her. Sometimes we have to go through

all the above suggestions & still have her complaining & crying for the pain,

but we just try & be patient & show her some understanding & she gets through

the episode, and luckily it isn't too often that this happens so badly.

I hope some of this can help.

mom of Kayla age 8

[Guest guest]

Hi Amy, I don't know that I have any good suggestions, maybe just reassurance

that you're not alone. I remember having terrible " growing pains " as a child and

also remember my sister crying at night because her legs hurt. She is very tall

so the doctors told my parents it was because she was growing too fast -- ok (?)

sounds like a good way to placate anxious parents. As we got older it got

better.

Then I had my own children. My son, who I am sure has CMT, too (I have been

diagnosed but have not formally had the children diagnosed, he just has all the

same things I did growing up) used to wake up crying and sobbing about the pain

in his legs. This was worst when he was about 4. When he started pointing to the

same spot every night I got myself in a panic about the possibiltiy of leukemia.

So I took him to the pediatrician for x-rays and was reassured it's just

" growing pains " . My son is now 12, very tall and no longer complains of the pain

at night in his legs.

When he was little I used to massage his legs and use heating pads. That seemed

to help. Just being rocked and soothed helped too. I think the best thing to

keep in mind is though it may not seem like it could be that painful as nothing

is visibly wrong -- it is. Just believing it and taking it seriously is huge for

a kid. His dad always acted skeptical about it, like he was just trying to get

attention.

Holli

>

> Hi,

>

> I'm not sure how to handle this or where to go....our daughter with

> CMT1A has struggled with leg pain for quite a few months but it has

> recently hit a new level. It had seemed to only hurt her when her

> legs didn't have support (stroller, car seat, grocery cart...) but now

> they are bothering her often. She is waking up from sleep crying,

> starts crying even when watching TV that they hurt while sitting on

> the couch....I'm trying to get her to pinpoint the pain but having a

> hard time with that.

>

> Does this sound like a possible CMT problem to anyone? Do you have

> any suggestions to help her with the pain?

>

> Amy

>

>

>

>

>

>

[Guest guest]

Hello all,

My daughter was the same. 4-5 years old seemed to be the worst. Now she is 9

almost 10 :-( and it is not as bad now. She will still have a bad night if she

had a busy day and did lots of walking. I use to hate the nights when she

would cry and cry and cry over the pain. It always seemed so much worse then my

pain is so it always got me worried that she was going to turn out worse then I

am. Plus to know I am the reason she has so much pain was not fun either. Many

depressed nights over that one. Just one of those things we need to deal with.

It much better now like I said so there is still hope.

We are going to Disney in a couple of months and I am already worried about her

legs. We have all started walking as a family to try and build up some stamina.

I sure hope it helps.

Take care all,

(Canada, type 1a)

[Guest guest]

Thank you everyone for your thoughts. It helps me to know that my

daughter will probably outgrow this. I am thinking that we have

really pushed her to walk this week between a trip to Santa Cruz and

adding stretching exercises.

Regarding Disney, we have annual passes and frequent it. This last

time I asked about a wheelchair pass with our stroller because my

daughter is 4 and they had one. We were able to act like a wheelchair

through the park and that helped a lot! She could do what she needed

at the time,

Amy

On Sep 22, 2009, at 5:00 PM, Matt & Marg wrote:

> Hello all,

>

> My daughter was the same. 4-5 years old seemed to be the worst. Now

> she is 9 almost 10 :-( and it is not as bad now. She will still have

> a bad night if she had a busy day and did lots of walking. I use to

> hate the nights when she would cry and cry and cry over the pain. It

> always seemed so much worse then my pain is so it always got me

> worried that she was going to turn out worse then I am. Plus to know

> I am the reason she has so much pain was not fun either. Many

> depressed nights over that one. Just one of those things we need to

> deal with. It much better now like I said so there is still hope.

>

> We are going to Disney in a couple of months and I am already

> worried about her legs. We have all started walking as a family to

> try and build up some stamina. I sure hope it helps.

>

> Take care all,

>

>

> (Canada, type 1a)

>

>

>