Re: Liam/ GHT/ < Wt

[Guest guest]

Where do you live? Dr.'s are crazy some times. I am glad Tori has a good

pediatrician and her gastro seems to be good so does her cardoi. Well good luck.

Liam/ GHT/ < Wt

Hi Guys

This came as no surprise to us, but Liam had his 3 month endo check

up yesterday and he has lost 0.5kg, he did grow 1.7cm though.

This was my greatest fear with Liam going onto growth hormone.

In short

We started GHT 6 months ago, in the first 3 months he grew 4cm and

put on 0.7kg.

Unfortunately we are still struggling to feed him. He is 100% g tube

fed, and is still only getting the same amount of calories as he was

a year ago(over 8cm ago). He has boluses or continuous feeds all day

to the max he will cope with approx 100ml every 2 hrs, and is fed

overnight.

Im convinced that Liams growth has dropped off because he doesnt get

enough calories. The endo wants to up his GHT, but if we do how is

he going to grow, with not enough cals.

I have an appt with the gastro specialist next Monday, the same one

that doesnt believe Liams reflux is significant.

Our Drs just dont work as a team and it really is the kids that

suffer because of it( and the parents)

The endo says the gastro specialist will sort the calorie problem

out, but , how??? he hasnt so far.

Sorry, this is just a vent really.

Jody(mum to Liam 3yrs 11 mnths 87cm 11kg and Cameron)

[Guest guest]

hey jody!!

sorry to hear that liam lost weight! we had the same problem with

christopher when he first started ght. dr h took him off (another endo

had put him on) and we did the periactin, she has restarted him in jan

and he has only grew a little and gained a little. she has since upped

both the periactin and the ght so we will see what happens!! good luck

to you!! is there any way you can contact dr h and see what she thinks?

jodie c

[Guest guest]

I agree with you. When a child grows at a significantly faster

velocity on GH, then that same child has to gain weight at a

similarly faster velocity. Liam isn't doing that. Eventually, when

the weight gain plateaus, the height growth will suffer as well,

even if the child is on GH. As you have heard Dr. H say " kids can't

grow on air. "

I personally agree with you that upping the GH without fixing the

caloric problem doesn't seem to be the answer (and could cause more

problems). Even if his height did grow a whole bunch, the fact is

that he isn't gaining weight and this is a serious problem.

I hope that the GI doctor can help figure out some answers for

Liam. Jenn

> Hi Guys

> This came as no surprise to us, but Liam had his 3 month endo

check

> up yesterday and he has lost 0.5kg, he did grow 1.7cm though.

> This was my greatest fear with Liam going onto growth hormone.

> In short

> We started GHT 6 months ago, in the first 3 months he grew 4cm and

> put on 0.7kg.

> Unfortunately we are still struggling to feed him. He is 100% g

tube

> fed, and is still only getting the same amount of calories as he

was

> a year ago(over 8cm ago). He has boluses or continuous feeds all

day

> to the max he will cope with approx 100ml every 2 hrs, and is fed

> overnight.

> Im convinced that Liams growth has dropped off because he doesnt

get

> enough calories. The endo wants to up his GHT, but if we do how is

> he going to grow, with not enough cals.

> I have an appt with the gastro specialist next Monday, the same

one

> that doesnt believe Liams reflux is significant.

> Our Drs just dont work as a team and it really is the kids that

> suffer because of it( and the parents)

> The endo says the gastro specialist will sort the calorie problem

> out, but , how??? he hasnt so far.

> Sorry, this is just a vent really.

> Jody(mum to Liam 3yrs 11 mnths 87cm 11kg and Cameron)

[Guest guest]

jody,

the doc are the same here for me they don't work together and they really

don't listen to me all that well my endo does good but my gi won't even up jacob

peractin he said he is fine just looks like a normal growth volisaty in weight

he won't listen to the fact it has to be high because of his ght he even wanted

to take him off of it i though well i guess some is better then

none............he won't even see him for a whole year little does he know i

will call him after we go to chicago and get questioned by dr.h i am sure it

will be a year of the same dose for him. i hope you can fiuger it out

cara

Jody & Damian wrote:

Hi Guys

This came as no surprise to us, but Liam had his 3 month endo check

up yesterday and he has lost 0.5kg, he did grow 1.7cm though.

This was my greatest fear with Liam going onto growth hormone.

In short

We started GHT 6 months ago, in the first 3 months he grew 4cm and

put on 0.7kg.

Unfortunately we are still struggling to feed him. He is 100% g tube

fed, and is still only getting the same amount of calories as he was

a year ago(over 8cm ago). He has boluses or continuous feeds all day

to the max he will cope with approx 100ml every 2 hrs, and is fed

overnight.

Im convinced that Liams growth has dropped off because he doesnt get

enough calories. The endo wants to up his GHT, but if we do how is

he going to grow, with not enough cals.

I have an appt with the gastro specialist next Monday, the same one

that doesnt believe Liams reflux is significant.

Our Drs just dont work as a team and it really is the kids that

suffer because of it( and the parents)

The endo says the gastro specialist will sort the calorie problem

out, but , how??? he hasnt so far.

Sorry, this is just a vent really.

Jody(mum to Liam 3yrs 11 mnths 87cm 11kg and Cameron)

---------------------------------

[Guest guest]

jennifer,

i know it really bugs me and i am try they just aren't listening. i am hoping

dr.h will tellme how to get them to up it all the time

cara mom to jacob

Briggs wrote:

Oh Cara, that is horrible. Make sure you get assertive with him. I'm sure

there must be something in Magic's library that you can get him to look and

hopefully he will then listen.

B

5 and Kelli 2 3/4

cara schobert wrote:

jody,

the doc are the same here for me they don't work together and they really

don't listen to me all that well my endo does good but my gi won't even up jacob

peractin he said he is fine just looks like a normal growth volisaty in weight

he won't listen to the fact it has to be high because of his ght he even wanted

to take him off of it i though well i guess some is better then

none............he won't even see him for a whole year little does he know i

will call him after we go to chicago and get questioned by dr.h i am sure it

will be a year of the same dose for him. i hope you can fiuger it out

cara

Jody & Damian wrote:

Hi Guys

This came as no surprise to us, but Liam had his 3 month endo check

up yesterday and he has lost 0.5kg, he did grow 1.7cm though.

This was my greatest fear with Liam going onto growth hormone.

In short

We started GHT 6 months ago, in the first 3 months he grew 4cm and

put on 0.7kg.

Unfortunately we are still struggling to feed him. He is 100% g tube

fed, and is still only getting the same amount of calories as he was

a year ago(over 8cm ago). He has boluses or continuous feeds all day

to the max he will cope with approx 100ml every 2 hrs, and is fed

overnight.

Im convinced that Liams growth has dropped off because he doesnt get

enough calories. The endo wants to up his GHT, but if we do how is

he going to grow, with not enough cals.

I have an appt with the gastro specialist next Monday, the same one

that doesnt believe Liams reflux is significant.

Our Drs just dont work as a team and it really is the kids that

suffer because of it( and the parents)

The endo says the gastro specialist will sort the calorie problem

out, but , how??? he hasnt so far.

Sorry, this is just a vent really.

Jody(mum to Liam 3yrs 11 mnths 87cm 11kg and Cameron)

---------------------------------

[Guest guest]

Jody,

This is a really tough thing to handle, but could it be because, unfortunately,

you haven't yet got the right set of doctors for Liam?

We spent the whole of last year with me saying I just couldn't get enough

calories into him and that I needed something extra, that had problems

with proteins and his doctors just said that was impossible. Each time, I was

sent away and near forced to keep feeding him high-calorie things that I now

know (having got a proper, internationally experienced GI doctor) were actually

causing to lose weight. It is only now that we have this diagnosis of

allergies that we are finally starting to make progress. What doctors thought

was representing as reflux (and we went as far as having a nissen done) was

actually sickness related to allergies. Just like you suggestions were made -

put on IVF artery feeding or double his GH dose. I too was convinced that was

not a good idea without sorting out his calorie intake problem first.

is also 100% tube fed at present on a hydrolized casein formula. For the

first time, it is not a high calorie one but he is beginning to gain a tiny bit

and at 3.5 years, he is also finally starting to take something by mouth now his

feeling of sickness/pain is more under control.

Our previous doctors just didn't know and wouldn't listen well enough to parent

impressions.....therein lies your problem and if you can't get your doctor to

listen to you honestly, then really, think about getting a new one. We had to go

back from Japan to the UK, travel to different hospitals there, and then come

back in order to find a good one that would take us on. When I was told " noone

knows " I believed it but in actual fact, they didn't know and didn't make the

effort that we all do, through such great groups as this, to find out. When

was relatively pain free on his rice-based diet (albeit not gaining

weight) I just let things run their course. Of course I am now kicking myself

for not doing it earlier.

What do I know, but have you thought of asking to change your formula to one

that is slightly more hydrolized (i.e. more hypo-allergenic) just in case it

might help ease his stomach/sickness for a while? I also found the " Milk & Soy

Protein Intolerance Guidebook/Cookbook " by Tamara Field to be a useful guide for

helping get my head around what alternatives there are out there to high calorie

foods just in case a long time on one formula has made our children less

tolerant to foods. I have blended formulas myself to use as alternatives to

commercial brands.

Debi

mother to in Japan, aged 3 years 6 months, 9.0 kilos, 85cm, RSS, GH,

dumping, milk/soy protein allergies?

----- Original Message -----

Jody & Damian wrote:

Hi Guys

This came as no surprise to us, but Liam had his 3 month endo check

up yesterday and he has lost 0.5kg, he did grow 1.7cm though.

This was my greatest fear with Liam going onto growth hormone.

In short

We started GHT 6 months ago, in the first 3 months he grew 4cm and

put on 0.7kg.

Unfortunately we are still struggling to feed him. He is 100% g tube

fed, and is still only getting the same amount of calories as he was

a year ago(over 8cm ago). He has boluses or continuous feeds all day

to the max he will cope with approx 100ml every 2 hrs, and is fed

overnight.

Im convinced that Liams growth has dropped off because he doesnt get

enough calories. The endo wants to up his GHT, but if we do how is

he going to grow, with not enough cals.

I have an appt with the gastro specialist next Monday, the same one

that doesnt believe Liams reflux is significant.

Our Drs just dont work as a team and it really is the kids that

suffer because of it( and the parents)

The endo says the gastro specialist will sort the calorie problem

out, but , how??? he hasnt so far.

Sorry, this is just a vent really.

Jody(mum to Liam 3yrs 11 mnths 87cm 11kg and Cameron)

---------------------------------