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Hi, Liz. At this point, I don't really have much to say about

's diet. I see that he is getting good nutrition from the foods

he eats, but I know it is frustrating that he is so set in his ways.

Does have any sensory issues? It could be that other foods

have a texture(s) that he does not like. His limited diet could also

be his own way of controlling his own world. It's hard to say.

But I'm glad you posted and have now become part of our family. We

will celebrate the good things and help out with the not so good.

Welcome.

Jodi Z

Mom to Max - 17, RSS

Jenna - 20 and driving us crazy!!!! but no RSS. She's bipolar. Ugh.

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Liz - hello! Welcome aboard. We are very happy to have you here.

I like what Jodi Z. said about the sensory issues for your son

- that makes a lot of sense. Sensory, as you know - involves

more than just texture - but, taste as well. I can't imagine what

you have had to endure trying to get him to eat something other than

porridge. Know - you are not alone. Feeding issues seems to be the

number one issue here! Are you familiar with the Magic Foundation?

They are a wealth of information as well.

My best to you.

- H () - I use " H " because there is more than one on

this listserve <grin>.

-- In RSS-Support , " lizzykaulbach "

<lizzykaulbach@y...> wrote:

>

> Hi...i have a wonderful 8yr old son () who was diagnosed

with

> Silver at about 9 months old. He has always been a happy

and

> healthy boy and he has been lucky enough to have only minimal

health

> problems. I have joined this group in the hope that someone has

some

> ideas on helping me with his diet. eats well, gets really

> hungry and has a very healthy diet. Unfortunately he will only eat

> the same six things all the time. This is an average day.

> Breakfast - Cow and gate creamed porridge for 4months+, carton of

> choc soya milk.

> Lunch - Banana, Fromage fraise, Pringles (about 10),2 choc

biscuits.

> Carton of choc soya milk.

> Dinner - Cow and gate creamed porridge for 4months+, fromage

fraise,

> pringles (about 10), 2 choc biscuits, Carton of choc soya milk.

>

> gets through a whole box of baby porridge every day and is

> prescribed a protein and calorie powder which i add to it. He will

> eat orange jelly aswell as various types of biscuit, crisps and

> fomage fraise, but his main intake is the porridge which he will

not

> alter. It has to be Cow and gate or he wont eat it. And he is not

> fooled by any sneaky changes. He has seen dieticians many times

over

> the years and they are basically clueless as to how to handle him.

> The last one told me there is nothing they can do and referred us

> back to our GP. We are now waiting to see a psychologist.

> has a big sister Jessie aged 10 and a baby brother or

sister

> on the way in febuary. Obviously i could talk about for

hours

> as he is an absolute love in every way, but really any help in how

> to improve his diet will be greatly appriciated. Hope to hear from

> someone soon. Liz Kaulbach.xxx

>

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Hey Liz my name is Sheldon and i have a 3 year Granddaughter that has RSS. She

is my Pride and Joy of my life.I am positive you will find all the answers you

need here because this listserve is just full of very intelligant and smart

women. Boy that otta get me some Brownie points, But it is true. I have kind of

mmade myself the official greeter so Welcome to our family and WELCOME HOME LIZ

Love Sheldon (G-Pa to Laikyn RSS from North Dakota)

New member saying hi.

Hi...i have a wonderful 8yr old son () who was diagnosed with

Silver at about 9 months old. He has always been a happy and

healthy boy and he has been lucky enough to have only minimal health

problems. I have joined this group in the hope that someone has some

ideas on helping me with his diet. eats well, gets really

hungry and has a very healthy diet. Unfortunately he will only eat

the same six things all the time. This is an average day.

Breakfast - Cow and gate creamed porridge for 4months+, carton of

choc soya milk.

Lunch - Banana, Fromage fraise, Pringles (about 10),2 choc biscuits.

Carton of choc soya milk.

Dinner - Cow and gate creamed porridge for 4months+, fromage fraise,

pringles (about 10), 2 choc biscuits, Carton of choc soya milk.

gets through a whole box of baby porridge every day and is

prescribed a protein and calorie powder which i add to it. He will

eat orange jelly aswell as various types of biscuit, crisps and

fomage fraise, but his main intake is the porridge which he will not

alter. It has to be Cow and gate or he wont eat it. And he is not

fooled by any sneaky changes. He has seen dieticians many times over

the years and they are basically clueless as to how to handle him.

The last one told me there is nothing they can do and referred us

back to our GP. We are now waiting to see a psychologist.

has a big sister Jessie aged 10 and a baby brother or sister

on the way in febuary. Obviously i could talk about for hours

as he is an absolute love in every way, but really any help in how

to improve his diet will be greatly appriciated. Hope to hear from

someone soon. Liz Kaulbach.xxx

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Hi Liz,

I am a 23 year old adult with RSS. Your son's eating habits sound a lot like

mine. I was, and still am, a very, very picky eater. I definitely have issues

with texture (still), and to this day, the list of things I will not eat is

about three times as long as the list of things I will eat. I think I eat

pretty well nutrition wise (especially when I compare what I eat with what my

peers eat), BUT I tend to eat a lot of the same things all the time. I

didn't eat meat until I was probably eight or so because I absolutely could not

stand the texture, and I still refuse to eat any meat product that has been

ground (no matter what it is). I don't eat red meat or pork, bananas (b/c

they're squishy), peas (for the same reason), pretty much any condiment but BBQ

sauce, anything fried, apples (the mush factor again), and the list goes on and

on (I won't bore you with the whole list <grin>). I have ALWAYS adored any

kind of soy product, which helped me get protein in the

early years when I wasn't eating meat (the consistency and texture is much

softer and less rubbery than actual meat). I would say that I still eat some

sort of soy " substitute " an average of three nights a week.

Anyway, my point in this whole ramble is that, while it's not ideal for a

child to be extremely picky, it is possible for an extremely picky child to

grow into an equally picky adult and still eat fairly well. I wish I had more

suggestions for you, but like others have said, just keep offering him

different foods and see if he'll try a wider range of foods on his own.

Welcome to the list, by the way.

~Hillary

23, RSS

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

Yahoo! FareChase - Search multiple travel sites in one click.

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Hi Liz. I just wanted to welcome you to the group. I wish I had some

feeding suggestions for you, but my little boy, who is 3, is fed by a

feeding tube. We are currently working with a therapist to get him

to be able to chew things. That is his major hang up right now.

Chewing is so hard for him! But, I did want to welcome you and if

you keep reading on here, you are bound to hear and learn ways things

to do and try! :o)

Take care,

Jodi R.

's mom

>

> Hi...i have a wonderful 8yr old son () who was diagnosed with

> Silver at about 9 months old. He has always been a happy

and

> healthy boy and he has been lucky enough to have only minimal

health

> problems. I have joined this group in the hope that someone has

some

> ideas on helping me with his diet. eats well, gets really

> hungry and has a very healthy diet. Unfortunately he will only eat

> the same six things all the time. This is an average day.

> Breakfast - Cow and gate creamed porridge for 4months+, carton of

> choc soya milk.

> Lunch - Banana, Fromage fraise, Pringles (about 10),2 choc

biscuits.

> Carton of choc soya milk.

> Dinner - Cow and gate creamed porridge for 4months+, fromage

fraise,

> pringles (about 10), 2 choc biscuits, Carton of choc soya milk.

>

> gets through a whole box of baby porridge every day and is

> prescribed a protein and calorie powder which i add to it. He will

> eat orange jelly aswell as various types of biscuit, crisps and

> fomage fraise, but his main intake is the porridge which he will

not

> alter. It has to be Cow and gate or he wont eat it. And he is not

> fooled by any sneaky changes. He has seen dieticians many times

over

> the years and they are basically clueless as to how to handle him.

> The last one told me there is nothing they can do and referred us

> back to our GP. We are now waiting to see a psychologist.

> has a big sister Jessie aged 10 and a baby brother or sister

> on the way in febuary. Obviously i could talk about for

hours

> as he is an absolute love in every way, but really any help in how

> to improve his diet will be greatly appriciated. Hope to hear from

> someone soon. Liz Kaulbach.xxx

>

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Liz,

I would echo's Jodi' suggestion to check into sensory integration

issues with your Occupational Therapist. There are some wonderful

therapies they can apply if that's the issue.

also, if you haven't already, rule out any structural (jaw) issues that

might be affecting his eating. -- see my post 5 mins ago on this.

Good Luck!

Frances - Mom to Max

>

> Hi, Liz. At this point, I don't really have much to say about

> 's diet. I see that he is getting good nutrition from the

foods

> he eats, but I know it is frustrating that he is so set in his ways.

>

> Does have any sensory issues? It could be that other foods

> have a texture(s) that he does not like. His limited diet could also

> be his own way of controlling his own world. It's hard to say.

>

> But I'm glad you posted and have now become part of our family. We

> will celebrate the good things and help out with the not so good.

> Welcome.

>

> Jodi Z

> Mom to Max - 17, RSS

> Jenna - 20 and driving us crazy!!!! but no RSS. She's bipolar. Ugh.

>

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Hi Liz,

My son is also 8 and has a very limited diet. He eats about 10 foods,

most of them pasta.

We too are struggling to add variety to his diet.

What we have been doing is asking him to try a new food, but if he

dosen't then he dosn't get to watch TV with dinner or play game boy

when we are out in the car running errands etc.

So far, we have tried a lot of new items and nothing has caught on. I

have heard that it can take up to 50 attempts on one food to get a

child to like it. We are focusing on adding chicken to his diet since

he eats so little protien.

I hope this helps.

Ken M

:)

>

> Hi...i have a wonderful 8yr old son () who was diagnosed with

> Silver at about 9 months old. He has always been a happy

and

> healthy boy and he has been lucky enough to have only minimal

health

> problems. I have joined this group in the hope that someone has

some

> ideas on helping me with his diet. eats well, gets really

> hungry and has a very healthy diet. Unfortunately he will only eat

> the same six things all the time. This is an average day.

> Breakfast - Cow and gate creamed porridge for 4months+, carton of

> choc soya milk.

> Lunch - Banana, Fromage fraise, Pringles (about 10),2 choc

biscuits.

> Carton of choc soya milk.

> Dinner - Cow and gate creamed porridge for 4months+, fromage

fraise,

> pringles (about 10), 2 choc biscuits, Carton of choc soya milk.

>

> gets through a whole box of baby porridge every day and is

> prescribed a protein and calorie powder which i add to it. He will

> eat orange jelly aswell as various types of biscuit, crisps and

> fomage fraise, but his main intake is the porridge which he will

not

> alter. It has to be Cow and gate or he wont eat it. And he is not

> fooled by any sneaky changes. He has seen dieticians many times

over

> the years and they are basically clueless as to how to handle him.

> The last one told me there is nothing they can do and referred us

> back to our GP. We are now waiting to see a psychologist.

> has a big sister Jessie aged 10 and a baby brother or sister

> on the way in febuary. Obviously i could talk about for

hours

> as he is an absolute love in every way, but really any help in how

> to improve his diet will be greatly appriciated. Hope to hear from

> someone soon. Liz Kaulbach.xxx

>

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Hi Liz

Just thought I would introsuce myself, my name is Brigitte and I have a 20 month

old daughter Bobbi with RSS, we live in Hertfordshire. Have you heard of the

Child Growth Foundation (UK version of Magic Foundation) they hold an annual

convention, we went for the first time this year 1st Oct. it was fantastic. I

know Bobbi is alot younger than but she will only except very smooth

textures and the same few foods, likes biting bits off Quavers too, but she

won't chew of swallow lumps? I'm still struggling so if you have any tips they

would be grately appreciated. Anyway I don't want to go on for ages but please

contact me if you have any other questions or want to chat.

brigitte.foreman@...

Brigitte (mum to Bobbi 20months, 16lb 13oz, 71cm)

New member saying hi.

Hi...i have a wonderful 8yr old son () who was diagnosed with

Silver at about 9 months old. He has always been a happy and

healthy boy and he has been lucky enough to have only minimal health

problems. I have joined this group in the hope that someone has some

ideas on helping me with his diet. eats well, gets really

hungry and has a very healthy diet. Unfortunately he will only eat

the same six things all the time. This is an average day.

Breakfast - Cow and gate creamed porridge for 4months+, carton of

choc soya milk.

Lunch - Banana, Fromage fraise, Pringles (about 10),2 choc biscuits.

Carton of choc soya milk.

Dinner - Cow and gate creamed porridge for 4months+, fromage fraise,

pringles (about 10), 2 choc biscuits, Carton of choc soya milk.

gets through a whole box of baby porridge every day and is

prescribed a protein and calorie powder which i add to it. He will

eat orange jelly aswell as various types of biscuit, crisps and

fomage fraise, but his main intake is the porridge which he will not

alter. It has to be Cow and gate or he wont eat it. And he is not

fooled by any sneaky changes. He has seen dieticians many times over

the years and they are basically clueless as to how to handle him.

The last one told me there is nothing they can do and referred us

back to our GP. We are now waiting to see a psychologist.

has a big sister Jessie aged 10 and a baby brother or sister

on the way in febuary. Obviously i could talk about for hours

as he is an absolute love in every way, but really any help in how

to improve his diet will be greatly appriciated. Hope to hear from

someone soon. Liz Kaulbach.xxx

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  • 2 weeks later...

Liz,

I'm late here welcoming you. I'm trying to catch up. My daughter was

diagnosed with RSS at age 3 3/4 by her geneticist, however, the endo

specializing in RSS saw at age 5 and said she doesn't think so.

also has problems with eating. She does not have a big variety in her diet

either. Of course my mother blames my husband and me for not having a huge

variety, however, my other daughter Kelli 3 1/2 will try anything.

's favorite is Lipton Ring O Noodle Soup with pastina in it. How does

like soup? Alot of 's problem with trying is food is the texture.

She doesn't like " mushy " foods, kinda like when something is a little soggy.

She loves mashed potatoes which she doesn't consider mushy because I'm thinking

she expects it to be smooth.

Welcome to the group, I hope someone's idea will help you.

B

and Kelli

lizzykaulbach wrote:

Hi...i have a wonderful 8yr old son () who was diagnosed with

Silver at about 9 months old. He has always been a happy and

healthy boy and he has been lucky enough to have only minimal health

problems. I have joined this group in the hope that someone has some

ideas on helping me with his diet. eats well, gets really

hungry and has a very healthy diet. Unfortunately he will only eat

the same six things all the time. This is an average day.

Breakfast - Cow and gate creamed porridge for 4months+, carton of

choc soya milk.

Lunch - Banana, Fromage fraise, Pringles (about 10),2 choc biscuits.

Carton of choc soya milk.

Dinner - Cow and gate creamed porridge for 4months+, fromage fraise,

pringles (about 10), 2 choc biscuits, Carton of choc soya milk.

gets through a whole box of baby porridge every day and is

prescribed a protein and calorie powder which i add to it. He will

eat orange jelly aswell as various types of biscuit, crisps and

fomage fraise, but his main intake is the porridge which he will not

alter. It has to be Cow and gate or he wont eat it. And he is not

fooled by any sneaky changes. He has seen dieticians many times over

the years and they are basically clueless as to how to handle him.

The last one told me there is nothing they can do and referred us

back to our GP. We are now waiting to see a psychologist.

has a big sister Jessie aged 10 and a baby brother or sister

on the way in febuary. Obviously i could talk about for hours

as he is an absolute love in every way, but really any help in how

to improve his diet will be greatly appriciated. Hope to hear from

someone soon. Liz Kaulbach.xxx

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