Re: braces, strollers and testing a baby

[Guest guest]

Hi Amelia,

I had the same problem with Adam and his baby brother. I found a stroller where

the back was a stand and ride or sit and ride. It

looked like a single from the front. I will look for a link.

[Guest guest]

Hi Amelia - This is just one mom's opinion:

Have AFOs been suggested for your daughter? If they have, then seek

an orthopedist and see what the doc says. For some CMT patients they

are a blessing and do help out with less fatigue. In our case, our

neurologist thought it might be time for our son to have AFOs and

yet the orthopedists we saw all concurred that AFOs would not help

him. He does not have significant foot drop either. So, each

patient needs to be evaluated for the appropriateness of the AFOs.

In my opinion, I would contact the local MDA and arrange to have your

youngest tested now. Knowing whether or not she has it will give you

peace of mind either way. IF no symptoms manifest while she's young

that's great...and if symptoms do manifest then you'll know it's not

your imagination.

My son has benefitted from extra Vitamin C being added to his daily

regimen. Check that out too...

Good Luck and please keep us posted.

[Guest guest]

Hi Again Amelia,

I stressed out so much when my youngest was a toddler. Every step he took or

didn't take made me worry. Once I found myself stressing out over CMT in a

toddler that wasn't even mine. It was just a baby in an office learning to walk.

Man, I needed to relax. I couldn't handle anymore CMT news so I didn't have him

tested. For my sanity I needed to make peace with any news before I could have

him tested.

[Guest guest]

Hi Amelia,

I would recommend following a " need to " guideline.

Does your 4 year old " need to " go to the mall with you? Can you leave her at

home with your husband or a trusted friend/family member? If so, that's the

best solution. The mall is a big place. Even for non-CMT children, it's hard

to spend a lot of time shopping with mom. It's incredibly boring and kids wear

out fast. As a mom, I could get a lot more done in a shorter amount of time if

I went without the kids. If there's a risk of over-fatiguing your daughter's

muscles, then all the more reason to let her do some other activity while you

quickly take care of the things you " need to " do on your own.

Does your 1 year old " need to " be tested? Will it change anything? Is there a

benefit? If not, then why test? You can simply treat her with care, knowing

the possibility exists. Does she " need to " walk by 13 months? It's ok if she

doesn't. There's no need to push her. At 13 months, my daughter could walk

with assistance, i.e. holding her hand. I don't recall when she was completely

stable on her own, but it was a few months later. I didn't know I had CMT at

the time and I still don't know if my 24 yr old daughter has it, but her

timeframe for walking was considered quite normal.

As a mom, there is a strong " need to " know and " need to " do something, but

perhaps a better approach is to ask...does my child really " need to " do this.

[Guest guest]

I personally would not test a child simply to know for sure or to ease one's

mind. A parent should always act in the child's best interest. In some cases,

being tested is not in the child's best interest.

By documenting the disease in the medical record, you could be making the child

uninsurable and perhaps even unemployable in the future. Yes, there are laws to

protect, but there are also ways around it.

IMO with 25 years in the insurance industry, I would recommend testing only if

there is a true medical reason for doing so. If there is no medical necessity,

then it's best to wait until the child is grown and can make this decision for

him/herself, i.e. like when considering childbearing.

Please see Gretchen's message #46615 Insurance Fears Lead Many to Shun DNA Tests

[Guest guest]

thanks everyone for your advice. The Caboose stroller looks super

cool! I need to get back and register her with the MDA haven't

gotten around to it yet. AFOs haven't been suggested by her Dr. but

we haven't seen him in a while so I need to make an apt. with him.

I'm still undecided about testing my 13 month old....I just want to

quit feeling the uncontrollable urge to test her reflexes every other

day. anyways thanks

Amelia

[Guest guest]

Hi Amelia,

If I were you, I would definatelly try AFOs on her. They might help with her

fatigue. If not, stop using them. But at least try them, they have a lot of

other benefits.

The way I explained to my son the function of AFOs is by giving him the example

of little turtles and crabs. That they need an outside shell for support in

order to get from one place to another. And sometimes we need that protection

around our feet as well.

I also showed him pictures of walking casts from the internet. If you decide to

try them, get them on a nice pink color or another color of her choice, and let

her put stickers on them so she feels motivated to wearing them.

Your worries in relation to your baby are normal. You are not alone. I am also

concerned about my daughter's chances of CMT. I think I will get her tested

this year, even if she doesn't show any signs.

I hope this helps.

Good luck!

[Guest guest]

Hi Amelia,

I'm just wondering if some high-top shoes might help Addie with the

distances, if her footdrop is so mild and the peroneal muscle isn't weakened.

Perhaps those with some Spencos for Kids would help for the time being,(

http://www.spenco-arch-supports.com/Kids-insoles_c_86-1-0.html ) seems like the

least expensive route, unless you go with custom ones, but as she grows, they'll

need to grow with her.

If your peace of mind would be at ease, knowing the test results, then

consider it. Especially if she has 1A, as new therapies are emerging

quickly that can help (once results are established) especially when

one is so young.

Gretchen

[Guest guest]

Hi Amelia,

I hear that !!! I did the same thing. A good friend of mine has had her last two

babies tested with in 6 months of their birth. I don't think there is a wrong or

right answer just do what you need to do.

[Guest guest]

Amelia,

My four year old with CMT got a script for a stroller from her neurologist and

her insurance paid for it, its a convaid cruiser, but she is 60 lbs and 41/2ft

tall so she was too big for regular strollers. We got it just so that she could

go with us to the mall and other places where she fatigues easily....like the

zoo. I had no idea they even had those until our Physical therapist told us

about them.