More questions on calorie catch up and GH!!

[Guest guest]

Please help me out - I am thinking out aloud...

I have not yet got an appointment to see Dr. H. I have an

appointment on Oct 14 with my endo who wants to put Kedhar on GH. I

am trying to figure everything out before I see either doctor.

From all you responses I understand that calorie catch up (that is

weight continues to gain without significant growth in height) needs

to be accomplished for most effective GHT.

1. Is this true for only RSS patients using GHT or for any patient

using GHT?

2. How do you know when calorie catch up is accomplished (weight-

height chart was mentioned, anything else?)?

3. What methods are being used to achieve calorie catch up -

periactin, G-tube etc?

4. For those who went the invasive route (G-tube, pump) etc why did

you choose this method?

5. Is there anyone who started (and have continued) on GHT without

knowing about/accomplishing calorie catch up?

Thank you in advance for all your responses.

-Malathi

Sahana & Kedhar (RSS - 32 months, 20lbs, 32 " )

[Guest guest]

Hi Malathi,

I can't anser many of your questions but I will try to answer a

little.

My son is 7 and he is on growth hormone. We started him when he was

about 5. He was and still does not take in all the calories he

should. Growth hormone has some appetite stimulating affects that

help with taking in more calories so it is not necessary or maybe

even possible with RSS or SGA kids to be caught up on the calorie

intake. In fact, one of the jusfifications our doctor used with the

insurance company was to increase his appetite through the use of

growth hormone.

As far as I know, any parent who used a feeding tube, had too because

their child was just not eating enough. I don't know of anyone who

asked for a feeding tube for their child because it would be easier

for them. Although, one never knows, it could have been that way for

a few.

Also, there a quite a few on this list who's child has a feeding

tube, is getting growth hormone and using periactin as well. My son

gets growth hormone and periactin. So far, no feeding tube required.

Please do not be overly concerned about growth hormone. It is a

fairly benign medication with very few side affects that most

children never experience. Also, this medication works best when

given in small doses over long periods of time. It is intended to be

a supplement for what ones body makes naturally.

I hope this helps.

Ken M

> Please help me out - I am thinking out aloud...

>

> I have not yet got an appointment to see Dr. H. I have an

> appointment on Oct 14 with my endo who wants to put Kedhar on GH.

I

> am trying to figure everything out before I see either doctor.

>

> From all you responses I understand that calorie catch up (that is

> weight continues to gain without significant growth in height)

needs

> to be accomplished for most effective GHT.

>

> 1. Is this true for only RSS patients using GHT or for any patient

> using GHT?

> 2. How do you know when calorie catch up is accomplished (weight-

> height chart was mentioned, anything else?)?

> 3. What methods are being used to achieve calorie catch up -

> periactin, G-tube etc?

> 4. For those who went the invasive route (G-tube, pump) etc why

did

> you choose this method?

> 5. Is there anyone who started (and have continued) on GHT without

> knowing about/accomplishing calorie catch up?

>

> Thank you in advance for all your responses.

>

> -Malathi

> Sahana & Kedhar (RSS - 32 months, 20lbs, 32 " )

[Guest guest]

Hi Malathi,

1. Is this true for only RSS patients using GHT or for any patient using

GHT?

As to your first question, I don't know. I do know that Dr H is big on

caloric catch-up, but the endo we tried here wasn't. She didn't feel that it

was possible to attain for , but never gave us a reason why.

2. How do you know when calorie catch up is accomplished (weight-height

chart was mentioned, anything else?)?

For B, Dr H felt that he had completed his caloric catch-up when he

continued to gain weight, but stop growing for a period of about 6 months.

He might have gained a couple of tenths of a cm during this time, but there

were no big spurts of growth. Also during this time, B went from below the

3rd% on the weight-for-height to the 50th%. He just got way too fat, believe

it or not! LOL This was a child that weighed 10# or less on his first

birthday!

3. What methods are being used to achieve calorie catch up - periactin,

G-tube etc?

B has a g-tube, and is 100% tube fed, so I'm not sure about other methods

for caloric catch-up. I know several people on the list serve have used

different suppliments as well as Periactin to attain it.

4. For those who went the invasive route (G-tube, pump) etc why did you

choose this method?

With B we didn't have a choice. He had the triple procedure (fundo,

pyloroplasty, g-tube placement) when he was 8.5 months of age, during his

first visit to Dr H. He only weighed 8# at the time, and was severely

malnourished and catabolic (his body was consuming itself to sustain his

brain). There was NO OTHER choice for him. The Drs here had missed his

silent reflux, and he had developed a severe oral aversion by the time we

got him to Dr H.

5. Is there anyone who started (and have continued) on GHT without knowing

about/accomplishing calorie catch up?

I think a lot of people get started on GHT without knowing about caloric

catch-up. As I said before, our first endo here in Cleveland, didn't think

that caloric catch-up was possible for B. She actually started B on GHT at

15 months of age (it was stopped within a week of onset when research showed

that we were basically wasting time using it before the age of 2)

Hope this helps

Pat (g-ma to , RSS, 32 months, 22.5#, 31.8 " , G-Tube)

[Guest guest]

Malathi

My son started GHT at the age of 8 years and 3 months. We didn't know

anything about catching up on calories back then (3 1/2 years ago). I don't

know why, is it something that Dr. H. has just figured out is the best

method within the last couple of years or is it because my son was so much

older and there was no point in delaying any second longer? or was it

because his weight was OK in relation to everything? I don't know but I did

want to let you know that we didn't go the route of catching up on calories

before beginning GHT.

Debby

More questions on calorie catch up and GH!!

> Please help me out - I am thinking out aloud...

>

> I have not yet got an appointment to see Dr. H. I have an

> appointment on Oct 14 with my endo who wants to put Kedhar on GH. I

> am trying to figure everything out before I see either doctor.

>

> From all you responses I understand that calorie catch up (that is

> weight continues to gain without significant growth in height) needs

> to be accomplished for most effective GHT.

>

> 1. Is this true for only RSS patients using GHT or for any patient

> using GHT?

> 2. How do you know when calorie catch up is accomplished (weight-

> height chart was mentioned, anything else?)?

> 3. What methods are being used to achieve calorie catch up -

> periactin, G-tube etc?

> 4. For those who went the invasive route (G-tube, pump) etc why did

> you choose this method?

> 5. Is there anyone who started (and have continued) on GHT without

> knowing about/accomplishing calorie catch up?

>

> Thank you in advance for all your responses.

>

> -Malathi

> Sahana & Kedhar (RSS - 32 months, 20lbs, 32 " )

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