Re: weight issues -- long answer

[Guest guest]

Hi ,

Welcome to our group. I hope we can answer all your questions.

I can answer a few. Hopefully, others can answer the rest.

We often check 's calories. He is 7 1/2 and 40 lbs.

We bought one of those scales at Kitchen Etc. It allows you to weigh

items up to about a pound. So what we do is weigh 's food before

he eats, then weigh it after and using the package information

calculate the calories.

For liquids, we do the same, using measuring cups, we measure how

much we give him to drink and then measure what is left.

After a while you get to know the calorie content of many foods. Most

meats are 80 calories/ounce, coke is 12 cal/ounce, juice is 15

cal/ounce, gogourt are 32 cal/ounce etc. You get the idea.

There are computer programs that can also do the same thing for you.

One is by a company called Nutribase ( I think ). They have hundreds

of popular items programmed in. All you have to do is enter the

quantity eaten and it gives a complete nutritional analysis -- grams

of fat, calories, vitamins, minerals etc. Of course, the more you

spend, the better the program. You can add foods to the database

also. I think they can be found on the internet.

Periactin does not work with about 30% of the kids who use it

according to our doctor in Boston. She also frequently reminds us

that its affect is subtle. You often don't see a big increase in

appetite. It just raises the average daily calorie intake by about 50

or 100 calories. And that has been our experience with it. It feels

like it is not working, but when we stop it, we can see a difference

in how much eats.

As for keeping a calorie count, we do it formally for 3 days before

we see a nutritionist. Otherwise, we do an estimate ( mainly in our

heads ) one or 2 times a week. We also weigh and record 's

weight every week. He is excited about this. He wants to see how much

he has grown in the past week. We constantly remind him that food is

the fuel to make him big and strong. We also tell him that he may not

get to be as big and strong as the other kids but we will never know

how big and strong he could be if he doesn't eat.

Our goal is to get him to eat as close to 1200 calories a day as

possible. Most days are close to but not quite a 1000. Some as low

as 600 calories a day.

We recently got to drink milk shakes. They are about 1/2 melted

ice cream, whole milk, and a ton of calcium fortified Hershey's

chocolate syrup.

went almost 2 years at 29 pounds. He would get heavier, then

get sick or refuse to eat and drop back down to 29 pounds. The doctor

constantly kept saying don't worry. Finally, we had a little talk in

which we not so subtly suggested we would change doctors if she did

not get more aggresive in getting his weight up. It was at this point

that she restarted the periactin and increased the growth hormone.

Last, for , we have noticed a synergy between growth hormone and

periactin. Individually, they are OK but not great. Together, he is

doing great, he actually gets hungry daily.

I hope this helps.

Ken M

>

> Hello all,

> This is my first post to the group. My son is 8 1/2 years

old.

> We have been dealing with these multiple issues that everyone is

> discussing forever. Eating, failure to thrive, failure on growth

> hormone. We finally got up the courage (and money) to go to chicago

> in july and it was life changing! We met Dr. H. and she met .

> the first thing she said was " how could this child be allowed to

be

> this thin? " . andrew is 81/2, weighs 39 lbs and has been at that

> weight for at least 7 months. We have been thru feeding teams and

> g.i. specialists at all the city hospitals in Boston and they keep

> saying " we will be aggressive " and then " why don't you do a diet

> history for three days and we'll see " . It is so.... frustrating as

> all of you have said.

>

> It was wonderful meeting Dr. H. We just returned from New York

where

> we had a full fledged meeting with her. her summary was that

> needs to gain weight in the next three months or we will move to a

g-

> tube. My husband and I have been ready for that step for a while

> because I just don't know if we can continue to push, encourage,

and

> worry about intake. he does well but then nothing. Add to that his

> sensory defensiveness, Asperger's syndrome, gastric motility delay,

> ADHD, and pancreatic disorder and he just doesn't like to eat or

see

> a need to eat.

> I guess I just wanted to touch base with kindred spirits. thanks

for

> listening and I'm sorry it's so long. Dr. H started on

> Periactin (we tried it before with little luck), Zantac, and

> previcid. I just almost feel like we came to late. It's not that I

> wasn't working at trying to get help with all this, we have been

> going to doctor's since before he was one. But noone gave us

answers

> until now. How do you all keep up with the calorie count? how can I

> start? Does it really help to add on the weight when you do that?

> thanks for any input and thanks for this list serve.

>

> , Mom to 81/2 44 " 39lbs, SGA, Asperger's, ADHD,

> our " litlle professor "