Re: Going to Dr. H & Weight/Height Ratio

[Guest guest]

Hi, my name is , I joined 1 year ago when my now-8-1/2 year old was

finally diagnosed with RSS. I don't post much but I lurk occassionally. I am

writing in response to two posts: One -- getting to Dr. H's office. TWO:

Weight vs. muscle mass/ ht/wt ratio.

I live in NY (Long Island actually) I don't see Dr. H, but Conor (my preemie

with RSS) was born at Mt. Sinai and many of his previous specialists are

located in the same building as Dr. H. I have an endo on LI.

Laguardia is the easiest/closest/most direct airport for getting to Mt. Sinai

(it's about 20 minutes without rush hour traffic). JFK is a little further

(about 30-40 minutes) -- I actually prefer JFK for their on-time performance

record but some find it difficult to navigate JFK. I've only dealt with Newark

in NJ on occassion, but my experiences would say this should be your last

resort.

There are lots of hotels right outside of Laguardia that might be cheaper

(i.e. Marriott Laguardia or something like that -- they are listed as being in

QUEENS). I don't know of any upper east side hotels, but there are lots right

in midtown -- but they could be pricey). The Marriott Eastside is on Lex and

51st street and is very nice (about a $15 cab ride to the hospital).

I wouldn't rent a car. Tolls will cost you $10. The parking alone in NY

will cost you $40-50 a day in a garage. Parking on the street by the hospital

is possible, but leave yourself lots of time to find a spot (depending on the

day -- we have alternate side of the street parking -- you can get a safe, free

spot without a 2 hour meter.) There are a gazillion cabs in NYC and at the

airports -- take a YELLOW CAB, not a black gypsy car. They have a set fee for

airport to NYC travel -- I think about $35. In the city you can take a cab

(they are always passing the hospital) or a bus from the hospital straight down

5th Ave to lots of sightseeing.

Mt. Sinai is actually relatively close to lots of sightseeing south of the

hospital. (Don't go North -- the neighborhood gets very sketchy). Mt Sinai's on

5th & Madison Avenues at 98th street (the entrance is on 98th 1/2 way between

Madison and 5th). The hospital is right across the street from Central Park

and there is a nice playground right there. The MET and the Gugenheim

Museums are just about 15-20 blocks down 5th Ave (up and downtown blocks are

short

blocks; crosstown blocks are longer -- more like 2-3 short blocks each). The

Central Park Zoo is very close too (around 80th street). Go down to 59th

street and 5th and you are in the heart of Midtown Manhattan -- the Plaza Hotel,

's, Bergdorfs, Trump Tower etc... Go 10 more blocks and you are at

Rockefeller Center, The Today Show, St. 's Cathedral, Saks 5th, etc.. If

you go down Madison instead of 5th you are in the heart of the ritziest

boutiques around.

OK now to #2: Weight ratio, muscle mass ---

I'm new to GH -- Conor's been on it for 10 months. He has gained 3 " and

6lbs. since he started. The height is very noticeable. He's still painfully

skinny -- 49 " & 44lbs (I think he's now 25% for height and 5% for weight). The

weight has been all muscle mass. We see it in his legs. This has been good too

because he has mild Cerebral Palsy and had very little muscle or strength.

He beat his little sister in a running race for the 1st time last week. Where

do you find out the weight to height ratio and what does it mean???

Conor has a small appetite. He's also on Concerta for ADHD so that weakens

his appetite a little. Although his problems with eating were more that he'd

get so distracted from his ADHD that he'd forget to chew or swallow the food in

his mouth, get up and leave the table constantly and eating one waffle would

take 40 minutes. Now he eats much more quickly and much more food. I was

wondering what/how much your kids eat.

His food regimine is something like this:

Wakes up 7:00am, eats a Kelloggs Crave Bar or Pop Tart while he has

PhysicalTherapy.

8:00 am eats an Ensure Pudding with 2 big tablespoons of peanut butter on the

side.

10:00 snack of granola bar or pretzels or whatever

12:00 lunch 10-12 cheez it crackers with peanut butter or a grilled cheese

sandwich

3:00 snack -- yogurt, granola bar -- or something similar

5:00 dinner -- one slice of pizza or one cheese burger or 6 chicken nuggets,

one tiny serving of a veggie

7:00 dessert -- cup of ice cream & a couple of cookies

Does this sound like what your kids eat? I know there is a horrible dearth

of fruit and veggies.

Any insight would be appreciated.

, Mom to Conor

[Guest guest]

,

Your 8 1/2 year old sounds a lot like mine.

Mine will eat cheese with anything which helps, but he really does

not eat much. Most of his weight gain came AFTER he started Gh a

couple of years ago. He is around 48 inches and goes between 50 and

52 pounds every few days. He is doing very well and I am planning to

speak to his GI doctor about reducing his reflux meds to see how he

does. Dr. H has even commented that his weight is too high for his

height. Last summer it was at 50% weight for height ratio. (There is

actually a chart for this where you chart height and weight rather

than age.) You could probably get one from your ped or online.

(Sorry, I don't know the web site).

Storm's usual day of eating is:

Breakfast: one SMALL bowl of cereal and a piece of butter bread.

Snack: small amount of chex mix

Lunch: cheeseburger and french fries (eats more fries than burger)

Or ramen noodles (but not many)

Snack: Cheese stick or pretzels or chex mix or skippy peanut butter

stick

Supper: Mac and cheese, maybe some chicken, leaves the veggies on the

plate!

Before bed snack: Milk with ovaltine and corn starch, butter bread (2

slices)

He seems to eat better at night than in the morning. (so do I!)

Anyhow, that is a typical day. Some days he eats much better than

others. I think if he could he would eat Macaroni and cheese for

every meal, and if it weren't for mac and cheese, he might starve! LOL

Well, that is my 8 almost 9 year old boy.

Hope this gives you some insight.

Carmen, mom to Paisley 11 (non-RSS) and Storm 8y 10m, RSS,