Re: question about dominic

[Guest guest]

, sorry to but in! I think it varies a lot, depending on your

doc. Darcy is 34 months and 17lb, well he was 17lb at 30 months and

hasn't been weighed since. He eats well and doesn't have a g-tube

(though from his photos Dr H says he " looks " like he needs one).

Despite his skinny appearance he eats really well, who knows where it

goes. He certainly never runs out of energy.

I am in Australia; Darcy's endo originally wanted to put Darcy on GH

when he was 2; now she is happy to " wait and see " . We will consider

it when he is 4-5 years old. Opinion as to the benifit of GH vary.

Some docs won't offer it at all. Darcy's endo is of the opinion that

it will make him taller in the short term only. There may be other

benefits for kids with RSS though.

Even though Darcy's weight is way below the curve on the growth chart

(and getting further away!) his height is consistently 5cm below the

3rs centile - ie, he's growing at a 'normal' rate but because he

started so much smaller, isn't " catching up " . Does this make sense?

{{HUGS}}

Steph (Darcy 34 months 7.8kg 82cm various minor physical

malformations and Tessa 7)

> F.

> Hi my name is , mom to Maddison. I just have a question

about

> Domonic. I noticed he is 3 and 18lbs. Is he on a feeding tube?

> What do the doctors say about his weight? Maddison is 20 months

and

> weighs 15lb and when we went to our first endo appt last month he

we

> not pleased with her weight. Her height was ok but not weight. She

> is not on a feeding tube. I just wonder if the endo doctors weight

a

> while about putting a child on growth hormones if their weight is

not

> good? I thought they start growth hormmones at 2? I am just

> learning about all this!!!!!

>

> mom to Maddison 20 months 15lb 27 in

[Guest guest]

Hi -

Dominic is not on a feeding tube b/c at this point his docs feel his

weight for height is ok. We and they did not want to do the tube

option unless it was absolutely necessary. I think we have made it

past the most difficult time and his appetite is getting better. Is

Maddison on periactin? That has really helped Dom but he is not on

it now because to be a patient in the protocol study, he is not

allowed to be on periactin. By the way, when Dr. H. saw Dom at the

conference she did not think he needed a tube.

Every endo you talk to would give you a different answer about when

to put a child on GHT. Dr. Harbison told us if Dom was her patient

she would probably wait a little longer to put him on GHT. She feels

a child should maximize the amount of growth they can achieve without

GHT and then start GHT. I guess it's a little more complicated then

that but that's it in a nutshell. However, to be a part of the

protocol study, Dominic needed to start GHT now so that's what we

did.

As far as whether GHT works, I am not sure if you were at the

conference. I apologize if I met you and don't remember but I met so

many people .. Anyhow, Dr. H's presentation of her data definitely

convinced me that GHT positively affects the final height of a

child. There is no doubt about it to me. Of course there will be

exceptions to that rule but generally speaking I think it works. I

hope this helps!

F.

-- In RSS-Support@y..., " Steph " wrote:

> , sorry to but in! I think it varies a lot, depending on

your

> doc. Darcy is 34 months and 17lb, well he was 17lb at 30 months

and

> hasn't been weighed since. He eats well and doesn't have a g-tube

> (though from his photos Dr H says he " looks " like he needs one).

> Despite his skinny appearance he eats really well, who knows where

it

> goes. He certainly never runs out of energy.

>

> I am in Australia; Darcy's endo originally wanted to put Darcy on

GH

> when he was 2; now she is happy to " wait and see " . We will

consider

> it when he is 4-5 years old. Opinion as to the benifit of GH

vary.

> Some docs won't offer it at all. Darcy's endo is of the opinion

that

> it will make him taller in the short term only. There may be other

> benefits for kids with RSS though.

>

> Even though Darcy's weight is way below the curve on the growth

chart

> (and getting further away!) his height is consistently 5cm below

the

> 3rs centile - ie, he's growing at a 'normal' rate but because he

> started so much smaller, isn't " catching up " . Does this make sense?

>

> {{HUGS}}

> Steph (Darcy 34 months 7.8kg 82cm various minor physical

> malformations and Tessa 7)

>

>

> > F.

> > Hi my name is , mom to Maddison. I just have a question

> about

> > Domonic. I noticed he is 3 and 18lbs. Is he on a feeding tube?

> > What do the doctors say about his weight? Maddison is 20 months

> and

> > weighs 15lb and when we went to our first endo appt last month he

> we

> > not pleased with her weight. Her height was ok but not weight.

She

> > is not on a feeding tube. I just wonder if the endo doctors

weight

> a

> > while about putting a child on growth hormones if their weight is

> not

> > good? I thought they start growth hormmones at 2? I am just

> > learning about all this!!!!!

> >

> > mom to Maddison 20 months 15lb 27 in

[Guest guest]

Hi -

Dominic is not on a feeding tube b/c at this point his docs feel his

weight for height is ok. We and they did not want to do the tube

option unless it was absolutely necessary. I think we have made it

past the most difficult time and his appetite is getting better. Is

Maddison on periactin? That has really helped Dom but he is not on

it now because to be a patient in the protocol study, he is not

allowed to be on periactin. By the way, when Dr. H. saw Dom at the

conference she did not think he needed a tube.

Every endo you talk to would give you a different answer about when

to put a child on GHT. Dr. Harbison told us if Dom was her patient

she would probably wait a little longer to put him on GHT. She feels

a child should maximize the amount of growth they can achieve without

GHT and then start GHT. I guess it's a little more complicated then

that but that's it in a nutshell. However, to be a part of the

protocol study, Dominic needed to start GHT now so that's what we

did.

As far as whether GHT works, I am not sure if you were at the

conference. I apologize if I met you and don't remember but I met so

many people .. Anyhow, Dr. H's presentation of her data definitely

convinced me that GHT positively affects the final height of a

child. There is no doubt about it to me. Of course there will be

exceptions to that rule but generally speaking I think it works. I

hope this helps!

F.

-- In RSS-Support@y..., " Steph " wrote:

> , sorry to but in! I think it varies a lot, depending on

your

> doc. Darcy is 34 months and 17lb, well he was 17lb at 30 months

and

> hasn't been weighed since. He eats well and doesn't have a g-tube

> (though from his photos Dr H says he " looks " like he needs one).

> Despite his skinny appearance he eats really well, who knows where

it

> goes. He certainly never runs out of energy.

>

> I am in Australia; Darcy's endo originally wanted to put Darcy on

GH

> when he was 2; now she is happy to " wait and see " . We will

consider

> it when he is 4-5 years old. Opinion as to the benifit of GH

vary.

> Some docs won't offer it at all. Darcy's endo is of the opinion

that

> it will make him taller in the short term only. There may be other

> benefits for kids with RSS though.

>

> Even though Darcy's weight is way below the curve on the growth

chart

> (and getting further away!) his height is consistently 5cm below

the

> 3rs centile - ie, he's growing at a 'normal' rate but because he

> started so much smaller, isn't " catching up " . Does this make sense?

>

> {{HUGS}}

> Steph (Darcy 34 months 7.8kg 82cm various minor physical

> malformations and Tessa 7)

>

>

> > F.

> > Hi my name is , mom to Maddison. I just have a question

> about

> > Domonic. I noticed he is 3 and 18lbs. Is he on a feeding tube?

> > What do the doctors say about his weight? Maddison is 20 months

> and

> > weighs 15lb and when we went to our first endo appt last month he

> we

> > not pleased with her weight. Her height was ok but not weight.

She

> > is not on a feeding tube. I just wonder if the endo doctors

weight

> a

> > while about putting a child on growth hormones if their weight is

> not

> > good? I thought they start growth hormmones at 2? I am just

> > learning about all this!!!!!

> >

> > mom to Maddison 20 months 15lb 27 in

[Guest guest]

Hi -

Dominic is not on a feeding tube b/c at this point his docs feel his

weight for height is ok. We and they did not want to do the tube

option unless it was absolutely necessary. I think we have made it

past the most difficult time and his appetite is getting better. Is

Maddison on periactin? That has really helped Dom but he is not on

it now because to be a patient in the protocol study, he is not

allowed to be on periactin. By the way, when Dr. H. saw Dom at the

conference she did not think he needed a tube.

Every endo you talk to would give you a different answer about when

to put a child on GHT. Dr. Harbison told us if Dom was her patient

she would probably wait a little longer to put him on GHT. She feels

a child should maximize the amount of growth they can achieve without

GHT and then start GHT. I guess it's a little more complicated then

that but that's it in a nutshell. However, to be a part of the

protocol study, Dominic needed to start GHT now so that's what we

did.

As far as whether GHT works, I am not sure if you were at the

conference. I apologize if I met you and don't remember but I met so

many people .. Anyhow, Dr. H's presentation of her data definitely

convinced me that GHT positively affects the final height of a

child. There is no doubt about it to me. Of course there will be

exceptions to that rule but generally speaking I think it works. I

hope this helps!

F.

-- In RSS-Support@y..., " Steph " wrote:

> , sorry to but in! I think it varies a lot, depending on

your

> doc. Darcy is 34 months and 17lb, well he was 17lb at 30 months

and

> hasn't been weighed since. He eats well and doesn't have a g-tube

> (though from his photos Dr H says he " looks " like he needs one).

> Despite his skinny appearance he eats really well, who knows where

it

> goes. He certainly never runs out of energy.

>

> I am in Australia; Darcy's endo originally wanted to put Darcy on

GH

> when he was 2; now she is happy to " wait and see " . We will

consider

> it when he is 4-5 years old. Opinion as to the benifit of GH

vary.

> Some docs won't offer it at all. Darcy's endo is of the opinion

that

> it will make him taller in the short term only. There may be other

> benefits for kids with RSS though.

>

> Even though Darcy's weight is way below the curve on the growth

chart

> (and getting further away!) his height is consistently 5cm below

the

> 3rs centile - ie, he's growing at a 'normal' rate but because he

> started so much smaller, isn't " catching up " . Does this make sense?

>

> {{HUGS}}

> Steph (Darcy 34 months 7.8kg 82cm various minor physical

> malformations and Tessa 7)

>

>

> > F.

> > Hi my name is , mom to Maddison. I just have a question

> about

> > Domonic. I noticed he is 3 and 18lbs. Is he on a feeding tube?

> > What do the doctors say about his weight? Maddison is 20 months

> and

> > weighs 15lb and when we went to our first endo appt last month he

> we

> > not pleased with her weight. Her height was ok but not weight.

She

> > is not on a feeding tube. I just wonder if the endo doctors

weight

> a

> > while about putting a child on growth hormones if their weight is

> not

> > good? I thought they start growth hormmones at 2? I am just

> > learning about all this!!!!!

> >

> > mom to Maddison 20 months 15lb 27 in