Re: eating issues and tube feeding.

[Guest guest]

>Can anyone tell me what to expect from the endo dr on friday.It is

our first appointment. will he know anything about RSS?

> Hi everyone,I keep reading everyones messages and am slowly

getting

> more familiar with everyone names and where you are all up

to.Sorry if

> I only ask questions at this point. I hope when we get as far as

you

> lot we will be able to contribute more. I am pleased to see other

new

> people asking and sharing there experiences. I would like to

involve

> us with everyones tips and advise on eating issues. Reading about

all

> the children not eating,refusing to eat and then eating, being

> sick,not liking food near them etc, etc, etc has amazed me. It is

as

> if someone is talking about Lily. I really feel for the lady who

is

> the grandmother of a little girl.(sorry forgot your names at the

> moment) We are so stressed and frustrated too>Our Lily will not

> eat,she will have a few mouthfulls then refuse.Here is what we

do......

> .I syringe feed her milk with calorie powder in it called

polycose,

> and marvel milk powder and calogen calorie liquid at about 9pm.

Then

> i do the same at 11pm. it is usually 4oz in total but that is a

pprox

> 200cals.

> she has a spoon in each hand at every meal time and I basically

let

> her make as much mess as she wants. We sing and cheer at every

> mouthfull and she likes that(sometimes).If she will not eat I

leave

> her then come back to it. Today I was tearfull when my husband

came

> home from work because she was stressed and wouldnt aeat her

tea.there

> was food everywhere. He bathed her whilst I cleaned up then she

just

> sat there at bedtime at let Joe our 4 year old son feed her and it

was

> the most she had eaten in days,it was amazing.She was so eager to

take

> food from him.

>

> Lily has an appointment on friday with and endocrinologist. Can

> anyone tell us what to expect for him.What do we need to ask him.

We

> think Lily needs tube feeding. Is an endo involved with this or

will

> he refer us on to some one else. Jayne mum to lily 13lb 12oz 66cms

>

[Guest guest]

Hi Jayne!

I had the same luck with having Dasia's siblings feeding her. That's great,

I love watching my kids bond like that. When I was telling you about the GI, I

didn't want to mention that he would be the one to do a g-tube. I didn't want to

seem like I was trying to push it on you. The more people around me that said

Dasia might need a feeding tube the more I went into denial. This had to be my

decision to feel good about it. It was a very delicate issue for me becuase

there were times when she would do so well, and gained a little over a pound

over this last summer, and had a nice little growth curve going. So I had a

battle in my mind, until there was no other choice, and I realized the good

times can't compensate for her down times. Now I see how it's not as big of a

deal as it seemed, and more of a relief than I could have ever thought. Dasia

doesn't get cranky as often anymore, she just seems so much more satisfied and

happy, even trying to talk a lot more. It also showed me

how little food and fluid she was actually getting before, once I had been

given her required feeding schedule for the tube, and now getting all the wet

diapers and such. Good luck with your appt with Endo! I hope you get lucky with

a very knowledgable Dr. Like Debby said, I think most Endos are familiar with

RSS, just may not know enough like we need them to know to get the best

treatment. Our kids deserve only the best! Definitely let us know how it goes.

And also, it will be your primary care physician who would refer Lily to a GI

Dr. I was surprised when you said you had expressed concern to her Dr. about

lack of appetite, constipation and possible reflux, and he wasn't concerned

enough to refer you to GI, especially considering her small size. You should be

able to get her referred just by a phone call to her Dr. Keep us posted Jayne!

jaynetolan wrote:

>Can anyone tell me what to expect from the endo dr on friday.It is

our first appointment. will he know anything about RSS?

> Hi everyone,I keep reading everyones messages and am slowly

getting

> more familiar with everyone names and where you are all up

to.Sorry if

> I only ask questions at this point. I hope when we get as far as

you

> lot we will be able to contribute more. I am pleased to see other

new

> people asking and sharing there experiences. I would like to

involve

> us with everyones tips and advise on eating issues. Reading about

all

> the children not eating,refusing to eat and then eating, being

> sick,not liking food near them etc, etc, etc has amazed me. It is

as

> if someone is talking about Lily. I really feel for the lady who

is

> the grandmother of a little girl.(sorry forgot your names at the

> moment) We are so stressed and frustrated too>Our Lily will not

> eat,she will have a few mouthfulls then refuse.Here is what we

do......

> .I syringe feed her milk with calorie powder in it called

polycose,

> and marvel milk powder and calogen calorie liquid at about 9pm.

Then

> i do the same at 11pm. it is usually 4oz in total but that is a

pprox

> 200cals.

> she has a spoon in each hand at every meal time and I basically

let

> her make as much mess as she wants. We sing and cheer at every

> mouthfull and she likes that(sometimes).If she will not eat I

leave

> her then come back to it. Today I was tearfull when my husband

came

> home from work because she was stressed and wouldnt aeat her

tea.there

> was food everywhere. He bathed her whilst I cleaned up then she

just

> sat there at bedtime at let Joe our 4 year old son feed her and it

was

> the most she had eaten in days,it was amazing.She was so eager to

take

> food from him.

>

> Lily has an appointment on friday with and endocrinologist. Can

> anyone tell us what to expect for him.What do we need to ask him.

We

> think Lily needs tube feeding. Is an endo involved with this or

will

> he refer us on to some one else. Jayne mum to lily 13lb 12oz 66cms

>

[Guest guest]

> >Can anyone tell me what to expect from the endo dr on friday.It

is

> our first appointment. will he know anything about RSS?

> > Hi everyone,I keep reading everyones messages and am slowly

> getting

> > more familiar with everyone names and where you are all up

> to.Sorry if

> > I only ask questions at this point. I hope when we get as far as

> you

> > lot we will be able to contribute more. I am pleased to see

other

> new

> > people asking and sharing there experiences. I would like to

> involve

> > us with everyones tips and advise on eating issues. Reading

about

> all

> > the children not eating,refusing to eat and then eating, being

> > sick,not liking food near them etc, etc, etc has amazed me. It

is

> as

> > if someone is talking about Lily. I really feel for the lady who

> is

> > the grandmother of a little girl.(sorry forgot your names at the

> > moment) We are so stressed and frustrated too>Our Lily will not

> > eat,she will have a few mouthfulls then refuse.Here is what we

> do......

> > .I syringe feed her milk with calorie powder in it called

> polycose,

> > and marvel milk powder and calogen calorie liquid at about 9pm.

> Then

> > i do the same at 11pm. it is usually 4oz in total but that is a

> pprox

> > 200cals.

> > she has a spoon in each hand at every meal time and I basically

> let

> > her make as much mess as she wants. We sing and cheer at every

> > mouthfull and she likes that(sometimes).If she will not eat I

> leave

> > her then come back to it. Today I was tearfull when my husband

> came

> > home from work because she was stressed and wouldnt aeat her

> tea.there

> > was food everywhere. He bathed her whilst I cleaned up then she

> just

> > sat there at bedtime at let Joe our 4 year old son feed her and

it

> was

> > the most she had eaten in days,it was amazing.She was so eager

to

> take

> > food from him.

> >

> > Lily has an appointment on friday with and endocrinologist. Can

> > anyone tell us what to expect for him.What do we need to ask

him.

> We

> > think Lily needs tube feeding. Is an endo involved with this or

> will

> > he refer us on to some one else. Jayne mum to lily 13lb 12oz

66cms

> >

>

>

>

>

>

>

>

>

[Guest guest]

, I was just reading this post and I still can't get past how

much our daughters have in common! I wish Dasia and Autumn could

meet...I can only imagine her having a friend the same age and size.

Autumn also loves her brother to feed her. The novelty has worn off

some, but it did and occationally can work wonders. it was her

brothers idea too! When is Dasia turning 2 again? Autumn will be 2

on this friday, the 20th. I am sorry to hear how sick she is, I hope

she feels better soon. Winters are horrible...I am hoping for an

early spring.

> >Can anyone tell me what to expect from the endo dr on friday.It is

> our first appointment. will he know anything about RSS?

> > Hi everyone,I keep reading everyones messages and am slowly

> getting

> > more familiar with everyone names and where you are all up

> to.Sorry if

> > I only ask questions at this point. I hope when we get as far as

> you

> > lot we will be able to contribute more. I am pleased to see other

> new

> > people asking and sharing there experiences. I would like to

> involve

> > us with everyones tips and advise on eating issues. Reading about

> all

> > the children not eating,refusing to eat and then eating, being

> > sick,not liking food near them etc, etc, etc has amazed me. It

is

> as

> > if someone is talking about Lily. I really feel for the lady who

> is

> > the grandmother of a little girl.(sorry forgot your names at the

> > moment) We are so stressed and frustrated too>Our Lily will not

> > eat,she will have a few mouthfulls then refuse.Here is what we

> do......

> > .I syringe feed her milk with calorie powder in it called

> polycose,

> > and marvel milk powder and calogen calorie liquid at about 9pm.

> Then

> > i do the same at 11pm. it is usually 4oz in total but that is a

> pprox

> > 200cals.

> > she has a spoon in each hand at every meal time and I basically

> let

> > her make as much mess as she wants. We sing and cheer at every

> > mouthfull and she likes that(sometimes).If she will not eat I

> leave

> > her then come back to it. Today I was tearfull when my husband

> came

> > home from work because she was stressed and wouldnt aeat her

> tea.there

> > was food everywhere. He bathed her whilst I cleaned up then she

> just

> > sat there at bedtime at let Joe our 4 year old son feed her and

it

> was

> > the most she had eaten in days,it was amazing.She was so eager to

> take

> > food from him.

> >

> > Lily has an appointment on friday with and endocrinologist. Can

> > anyone tell us what to expect for him.What do we need to ask him.

> We

> > think Lily needs tube feeding. Is an endo involved with this or

> will

> > he refer us on to some one else. Jayne mum to lily 13lb 12oz 66cms

> >

>

>

>

>

>

>

>

>

[Guest guest]

Jayne - keep us posted on the endo appointment. GI docs usually

have quite a bit of knowledge about nutrition and would be a good

option for Lilly. As a matter of fact. When Ian was diagnosed with

RSS, I automatically made the " rounds " of appointments with all the

physicians that are typically involved in RSS children's lives;

i.e., Endo, GI, Orthopedic, Cranio-Facial, Nutritionist, Speech

Therapist, and Neurologist (for Ian's large head size). Even though

Ian may not have needed all of their services at the time - it

helped me to build a " base " for Ian's future needs. Just a thought.

Take Care. Thinking of you.

- H

>

> Hi everyone,I keep reading everyones messages and am slowly

getting

> more familiar with everyone names and where you are all up

to.Sorry if

> I only ask questions at this point. I hope when we get as far as

you

> lot we will be able to contribute more. I am pleased to see other

new

> people asking and sharing there experiences. I would like to

involve

> us with everyones tips and advise on eating issues. Reading about

all

> the children not eating,refusing to eat and then eating, being

> sick,not liking food near them etc, etc, etc has amazed me. It is

as

> if someone is talking about Lily. I really feel for the lady who

is

> the grandmother of a little girl.(sorry forgot your names at the

> moment) We are so stressed and frustrated too>Our Lily will not

> eat,she will have a few mouthfulls then refuse.Here is what we

do......

> .I syringe feed her milk with calorie powder in it called

polycose,

> and marvel milk powder and calogen calorie liquid at about 9pm.

Then

> i do the same at 11pm. it is usually 4oz in total but that is a

pprox

> 200cals.

> she has a spoon in each hand at every meal time and I basically

let

> her make as much mess as she wants. We sing and cheer at every

> mouthfull and she likes that(sometimes).If she will not eat I

leave

> her then come back to it. Today I was tearfull when my husband

came

> home from work because she was stressed and wouldnt aeat her

tea.there

> was food everywhere. He bathed her whilst I cleaned up then she

just

> sat there at bedtime at let Joe our 4 year old son feed her and it

was

> the most she had eaten in days,it was amazing.She was so eager to

take

> food from him.

>

> Lily has an appointment on friday with and endocrinologist. Can

> anyone tell us what to expect for him.What do we need to ask him.

We

> think Lily needs tube feeding. Is an endo involved with this or

will

> he refer us on to some one else. Jayne mum to lily 13lb 12oz 66cms

>