Fw: Height/ Weight Ratio- SMAers

[Guest guest]

Lori,

Here is what she said, hope some of it makes sense. First she responded

regarding kids only and then I asked for clarification regarding adults.

Hi Kristal,

The proper weight for kids with SMA Type 1 is 35% below the average weight for

kids of the same age. I'm loosely translating that into 15-25% less for kids

with SMA Type 2. That being said, an average weight for a child Brett's age

would be 55-65 lbs. Therefore, an adequate weight for Brett might be around 45

lbs. However, this is a loose estimate. The main thing is that he is making

steady progress with weight gain and that he looks well nourished. A physical

exam of his body can often tell more than a number on the scale. Do the

following look strong and healthy: hair, skin, and nails? Is he able to fight

off illness and bounce back in a reasonable amount of time? Is he proportionate

(i.e. you don't want to see skinny arms and legs with a bloated belly)? Does he

have a little fat on his body or can you see his bones?

I would say that you could apply what I said to adults. Your friend could google

" Ideal Body Weight for Adults " and I'm sure a ton of tables will pop up. Also, a

general rule of thumb is:

females: 100 lbs for 5 ft and 5 lbs for every inch above that (ex: an ideal body

weight for a female who is 5' 5 " would be 125 lbs)

males: 106 lbs for 5 ft and 5 lbs for every inch above that

Your friend could figure out an ideal body weight based on height and then

subtract 15-35% from that amount based on the type of SMA he or she has.

Again, I would also tell your friend to look at the physical aspects I mentioned

b/c that's more important than a number on the scale.

[Guest guest]

The whole problem I seem to have using the height/weight charts is

that I have no idea how tall I really am. If I'm measured, I'm 4'6 " ,

but I still have significant scoliosis. Who knows how tall I'd be if

I were all stretched out. I'm guessing this would make a difference.

Jenn Malatesta

nekrosys@...

nekrosys.net

[Guest guest]

Using a wingspan measurement and a little fudging is the probably your best bet.

Before h's scoli surgery we had no real way to know. We did the wingspans

and that was closer, but they still guessed about 5 inches short of where she

actually was. I *knew* she was closer to 60 " because of her leg length and arm

length, but they insisted on a much lower height being put in the chart.

Immediately after surgery we measured and she was right at 60 " . Score one for

Mom *LOL*

So according to her height she should weigh about 80-90..... I'd go for that! My

back is screaming about the 100-105!!!!!

Love and Hugs

Jeni

Re: Fw: Height/ Weight Ratio- SMAers

The whole problem I seem to have using the height/weight charts is

that I have no idea how tall I really am. If I'm measured, I'm 4'6 " ,

but I still have significant scoliosis. Who knows how tall I'd be if

I were all stretched out. I'm guessing this would make a difference.

Jenn Malatesta

nekrosyscinci (DOT) rr.com

nekrosys.net

[Guest guest]

How do you do a wingspan measurement?

On Apr 16, 2008, at 10:27 AM, Jenifer Woody wrote:

> Using a wingspan measurement and a little fudging is the probably

> your best bet. Before h's scoli surgery we had no real way to

> know. We did the wingspans and that was closer, but they still

> guessed about 5 inches short of where she actually was. I *knew*

> she was closer to 60 " because of her leg length and arm length, but

> they insisted on a much lower height being put in the chart.

> Immediately after surgery we measured and she was right at 60 " .

> Score one for Mom *LOL*

> So according to her height she should weigh about 80-90..... I'd go

> for that! My back is screaming about the 100-105!!!!!

>

> Love and Hugs

> Jeni

Jenn Malatesta

nekrosys@...

nekrosys.net

[Guest guest]

I loathe these " ideal weight " and BMI calculators. They just don't

translate properly to individuals with most disabilities. I'm 4'7 " and

my " ideal weight " is 68 - 83 pounds. I find this to be absolutely

disgusting. When I was 75 lbs I was wearing children's size 12 and 14.

I was rail thin, extremely weak, and always getting sick.

According to all those charts, and when you fudge them a little, I'm

overweight, at 90 pounds. I'm 90 lbs, and you're going to tell me I'm

overweight? Forget that! I feel healthy. I'm rarely sick, and when I

am ill I bounce back from it quickly. I finally have hips and breasts,

and my arms and legs still look on the small side. I've been told in

the past by an MDA clinic doctor that I need to lose weight, but EFF

that. I'm hot and sexy, and I feel good!

<3Kendra

>

> Using a wingspan measurement and a little fudging is the probably

your best bet. Before h's scoli surgery we had no real way to

know. We did the wingspans and that was closer, but they still guessed

about 5 inches short of where she actually was. I *knew* she was

closer to 60 " because of her leg length and arm length, but they

insisted on a much lower height being put in the chart. Immediately

after surgery we measured and she was right at 60 " . Score one for Mom

*LOL*

> So according to her height she should weigh about 80-90..... I'd go

for that! My back is screaming about the 100-105!!!!!

>

>

> Love and Hugs

> Jeni

>

>

>

>

> Re: Fw: Height/ Weight Ratio- SMAers

>

> The whole problem I seem to have using the height/weight charts is

> that I have no idea how tall I really am. If I'm measured, I'm 4'6 " ,

> but I still have significant scoliosis. Who knows how tall I'd be if

> I were all stretched out. I'm guessing this would make a difference.

>

> Jenn Malatesta

> nekrosyscinci (DOT) rr.com

> nekrosys.net

>

>

[Guest guest]

lol...measured i'm 4'10 " ...wingspan i'd be 5'10 " . yes my family s

tall. i'm underweight at 53 lbs. but only have the goal to not be

bony. 65 lbs. will be great. above that i'm exhausted trying to move

around. i don't worry about charts, averages, etc. my goal is to feel

healthy, comfortable in my body, and to get less infections. we'll see

what happens if i can gain that weight.

[Guest guest]

My sister-in-law is a nurse practitioner and she said they don't even

use those charts in here office anymore because they are so out of date.

On Apr 16, 2008, at 12:18 PM, Kendra wrote:

> I loathe these " ideal weight " and BMI calculators.

Jenn Malatesta

nekrosys@...

nekrosys.net

[Guest guest]

My experience is that this is true even for people with more muscle. I don't

know about everywhere, but my doc *can't* use them for me, anyway. It's the

opposite reason though. I have so much muscle packed onto my frame from

lifting/carrying h that if they used the height/weight chart I would be

considered obese! I am 5' 4 " and weigh just over 150ish right now. My body with

ZERO fat would weigh just about 118. I'm in the normal range for body

composition and wear somewhere around a size 6.

My point (rambling....) is that there is no way that those charts can accurately

apply to such a broad range of people. Body composition is a MUCH better

indicator, but for the SMA population I like Alana's take on it. With h

we're looking more at her overall health and her pulmonary function than any

stupid chart ;0)

Love and Hugs

Jeni

Re: Re: Fw: Height/ Weight Ratio- SMAers

My sister-in-law is a nurse practitioner and she said they don't even

use those charts in here office anymore because they are so out of date.

On Apr 16, 2008, at 12:18 PM, Kendra wrote:

> I loathe these " ideal weight " and BMI calculators.

Jenn Malatesta

nekrosyscinci (DOT) rr.com

nekrosys.net

[Guest guest]

I use a very helpful web site whenever I want to check my calorie and

nutrient intake. I type in everything I eat and it calculates how I

did based on recommended nutritional intake. It's taught mt to up my

fruits and veggies and add calories without adding bad fats.

Go to: http://www.mypyramidtracker.gov/login.aspx

I've also posted an example of my intake in the files section here.

Alana