Re: Debbie - Results on GHT - Side effects

[Guest guest]

The only side effect that has had is the one side effect

that has been found in many studies for RSS/SGA kids. Growth

hormone raises insulin levels during treatment. So the child can

have sudden onset of hypoglycemia; it is important that the insulin

levels are monitored by the endocrinologist; and for us, we ensure

that eats food (carbos) regularly about every 90 minutes or

so.

However, all of the recent studies have found that these insulin

levels go back down to pre-treatment levels within 6 months of

discontinuing growth hormone (whereas the benefits of the lower

lipid levels, lower blood pressure, etc. -- the studies have found

that these benefits have STAYED the better rate after GHT is

discontinued). Strange!

> > > > >

> > > > > Hi Everyone

> > > > >

> > > > > I'm looking for everyone's advice. will be going

to her

> > > > second

> > > > > endo visit in December at which time I believe we will be

> > > > discussing

> > > > > growth hormone with him. sometimes says things

like she

> > > > wants

> > > > > to be big like so and so and I tell her that if she keeps

> > eating

> > > > good

> > > > > she will. I'm now feeling that I need to change what I say

> > because

> > > > > pretty soon someway somehow I'm going to have to tell her

that

> > she

> > > > > needs these shots to help her. Do I need to start telling

her

> > > > what is

> > > > > going on about her height? I always tell her what each

doctor

> > is

> > > > for

> > > > > such as her cardiologist takes care of her heart and her

ped

> > makes

> > > > > sure she gets better when she is sick but since we only

had one

> > > > endo

> > > > > visit it doesn't come up much. I'm not certain or sure

what I

> > > > need to

> > > > > say or do. I guess its a tough position for any parent

> > because you

> > > > > don't want to put so much emphasize on their size but yet

how

> > do

> > > > you

> > > > > prepare them for having to get these shots on a daily

basis? I

> > > > know

> > > > > most of the kids start growth hormone at 2 but she is

going to

> > be

> > > > 5!

> > > > >

> > > > > One other quick question. When was at the ped's

office

> > > > > yesterday for a sick appointment we put her on the scale.

She

> > had

> > > > her

> > > > > pants, shirt and socks on but no shoes and weighed 30 3/4

> > pounds.

> > > > How

> > > > > much of a deduction do you think there would be for her

> > clothing?

> > > > >

> > > > > Thank you

> > > > >

> > > > > B

> > > > > 4 3/4 RSS and Kelli 2 Non RSS

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Hi ,

I find it unusual that your doctor recommends carbs to offset the

adverse effects of abnormal insulin levels and/or hypoglycemia. My

daughter's endo has placed her on a program that emphasizes protein

with SOME carbs, in particular complex carbs. This is working well

with her growth hormone shots. Otherwise this could be setting

these RSS kids up for problems when they are older according to her

endo.

Jean

> > > > > >

> > > > > > Hi Everyone

> > > > > >

> > > > > > I'm looking for everyone's advice. will be going

> to her

> > > > > second

> > > > > > endo visit in December at which time I believe we will be

> > > > > discussing

> > > > > > growth hormone with him. sometimes says things

> like she

> > > > > wants

> > > > > > to be big like so and so and I tell her that if she keeps

> > > eating

> > > > > good

> > > > > > she will. I'm now feeling that I need to change what I

say

> > > because

> > > > > > pretty soon someway somehow I'm going to have to tell

her

> that

> > > she

> > > > > > needs these shots to help her. Do I need to start

telling

> her

> > > > > what is

> > > > > > going on about her height? I always tell her what each

> doctor

> > > is

> > > > > for

> > > > > > such as her cardiologist takes care of her heart and her

> ped

> > > makes

> > > > > > sure she gets better when she is sick but since we only

> had one

> > > > > endo

> > > > > > visit it doesn't come up much. I'm not certain or sure

> what I

> > > > > need to

> > > > > > say or do. I guess its a tough position for any parent

> > > because you

> > > > > > don't want to put so much emphasize on their size but

yet

> how

> > > do

> > > > > you

> > > > > > prepare them for having to get these shots on a daily

> basis? I

> > > > > know

> > > > > > most of the kids start growth hormone at 2 but she is

> going to

> > > be

> > > > > 5!

> > > > > >

> > > > > > One other quick question. When was at the ped's

> office

> > > > > > yesterday for a sick appointment we put her on the

scale.

> She

> > > had

> > > > > her

> > > > > > pants, shirt and socks on but no shoes and weighed 30 3/4

> > > pounds.

> > > > > How

> > > > > > much of a deduction do you think there would be for her

> > > clothing?

> > > > > >

> > > > > > Thank you

> > > > > >

> > > > > > B

> > > > > > 4 3/4 RSS and Kelli 2 Non RSS

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Debbie - I apologize. I was typing too fast, and not going over

what I wrote. I have written about 's nutrition a lot in the

MAGIC newsletter and on prior postings, but I forget that there are

always new folks.

You are correct, is not on 100% complex carbs. We tried

that for a while, but all it did was make the hypoglycemia worse

because it jumped up her sugars and then they would plummet down.

The problem is that her best weight gain is with more carbs.

We then tried mostly protein and some fats and some complex carbs.

Her weight gain was ABYSMAL. We would have to put a feeding tube in

if we stayed that way.

So, now we are more complex carbs, with some protein and dairy

thrown in. is a bit different than the average RSS child,

though, because she has less than 1% body fat - she is solid

muscle. THis causes sudden onset hypoglycemia far worse than the

average RSS child on growth hormone, because she has no glycogen

storage. So she would probably need more complex carbs than the

average child, or so I am told.

For example, here is a typical day.

Breakfast: 1 sausage link and 1 waffle with syrup; small glass of

orange juice with her Miralax

SNACK BAG FOR SCHOOL (which means she eats it throughout the day):

1 Frusion smoothie (270 calories, yahoo)

baggie of handful Almonds

baggie - 10 pretzels with peanut butter inside

baggie with cheddar goldfish

1/2 Clif Bar

Turkey jerky or Slim Jim

(She normally skips one or 1/2 of the things above)

Lunch: (who knows what she orders from the cafeteria, I let her

have freedom since I know she is eating her snacks)

AFTER SCHOOL:

Glass of milk

Microwaved bean and cheese burrito (yahoo 330 calories)

crackers of some type

fruit, something else

DINNER: and then a bowl of ice cream or something

So you can see that although carbs are heavy in her school snacks,

because of her running around a lot at recess, etc., we have tried

to put more dairy and protein in throughout the day.

Hope this better clarifies things. Your email made me realize that

I need to check the listserve when I have time to really read my

emails, instead of " dashing off a note " . Thank you!

Salem

> > > > > > >

> > > > > > > Hi Everyone

> > > > > > >

> > > > > > > I'm looking for everyone's advice. will be

going

> > to her

> > > > > > second

> > > > > > > endo visit in December at which time I believe we will

be

> > > > > > discussing

> > > > > > > growth hormone with him. sometimes says things

> > like she

> > > > > > wants

> > > > > > > to be big like so and so and I tell her that if she

keeps

> > > > eating

> > > > > > good

> > > > > > > she will. I'm now feeling that I need to change what

I

> say

> > > > because

> > > > > > > pretty soon someway somehow I'm going to have to tell

> her

> > that

> > > > she

> > > > > > > needs these shots to help her. Do I need to start

> telling

> > her

> > > > > > what is

> > > > > > > going on about her height? I always tell her what

each

> > doctor

> > > > is

> > > > > > for

> > > > > > > such as her cardiologist takes care of her heart and

her

> > ped

> > > > makes

> > > > > > > sure she gets better when she is sick but since we

only

> > had one

> > > > > > endo

> > > > > > > visit it doesn't come up much. I'm not certain or

sure

> > what I

> > > > > > need to

> > > > > > > say or do. I guess its a tough position for any parent

> > > > because you

> > > > > > > don't want to put so much emphasize on their size but

> yet

> > how

> > > > do

> > > > > > you

> > > > > > > prepare them for having to get these shots on a daily

> > basis? I

> > > > > > know

> > > > > > > most of the kids start growth hormone at 2 but she is

> > going to

> > > > be

> > > > > > 5!

> > > > > > >

> > > > > > > One other quick question. When was at the

ped's

> > office

> > > > > > > yesterday for a sick appointment we put her on the

> scale.

> > She

> > > > had

> > > > > > her

> > > > > > > pants, shirt and socks on but no shoes and weighed 30

3/4

> > > > pounds.

> > > > > > How

> > > > > > > much of a deduction do you think there would be for her

> > > > clothing?

> > > > > > >

> > > > > > > Thank you

> > > > > > >

> > > > > > > B

> > > > > > > 4 3/4 RSS and Kelli 2 Non RSS

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Hi ,

Thru our endo we found that one of the keys to our daughter's

diet

was the importance of the high fat consumption. But more

importantly he is very strict as to the type of fats our daughter

consumes. This means avoiding all foods with trans fats, since they

block the proper hormone secretion, and believe it or not all

vegetable oils since they upset the omega 6 to omega 3 balance

(which means avoiding most processed foods). Consequently, we focus

on extra virgin olive oil, cod liver oil (omega 3....don't worry

the

type we use tastes great), real cultured butter, etc.

Your list of foods looked similar to ours until our endo critiqued

and made us implement dramatic changes. He would recommend avoiding

simple carbs because they act just as if you ate pure sugar which

upsets the hormonal balance (abnormal insulin levels and/or

hypoglycemia). For what its worth he would classify the following

foods you mentioned as simple carbs: waffle, orange juice,

pretzels, goldfish, crackers, burrito shell…..and that they also

contain trans fats and vegetable oils (except the OJ).

Jean

> > >

> > > The only side effect that has had is the one side

effect

> > > that has been found in many studies for RSS/SGA kids. Growth

> > > hormone raises insulin levels during treatment. So the child

> can

> > > have sudden onset of hypoglycemia; it is important that the

> > insulin

> > > levels are monitored by the endocrinologist; and for us, we

> ensure

> > > that eats food (carbos) regularly about every 90

minutes

> > or

> > > so.

> > >

> > > However, all of the recent studies have found that these

insulin

> > > levels go back down to pre-treatment levels within 6 months of

> > > discontinuing growth hormone (whereas the benefits of the

lower

> > > lipid levels, lower blood pressure, etc. -- the studies have

> found

> > > that these benefits have STAYED the better rate after GHT is

> > > discontinued). Strange!

> > >

> > >

> > >