weight issues

[Guest guest]

Hello all,

This is my first post to the group. My son is 8 1/2 years old.

We have been dealing with these multiple issues that everyone is

discussing forever. Eating, failure to thrive, failure on growth

hormone. We finally got up the courage (and money) to go to chicago

in july and it was life changing! We met Dr. H. and she met .

the first thing she said was " how could this child be allowed to be

this thin? " . andrew is 81/2, weighs 39 lbs and has been at that

weight for at least 7 months. We have been thru feeding teams and

g.i. specialists at all the city hospitals in Boston and they keep

saying " we will be aggressive " and then " why don't you do a diet

history for three days and we'll see " . It is so.... frustrating as

all of you have said.

It was wonderful meeting Dr. H. We just returned from New York where

we had a full fledged meeting with her. her summary was that

needs to gain weight in the next three months or we will move to a g-

tube. My husband and I have been ready for that step for a while

because I just don't know if we can continue to push, encourage, and

worry about intake. he does well but then nothing. Add to that his

sensory defensiveness, Asperger's syndrome, gastric motility delay,

ADHD, and pancreatic disorder and he just doesn't like to eat or see

a need to eat.

I guess I just wanted to touch base with kindred spirits. thanks for

listening and I'm sorry it's so long. Dr. H started on

Periactin (we tried it before with little luck), Zantac, and

previcid. I just almost feel like we came to late. It's not that I

wasn't working at trying to get help with all this, we have been

going to doctor's since before he was one. But noone gave us answers

until now. How do you all keep up with the calorie count? how can I

start? Does it really help to add on the weight when you do that?

thanks for any input and thanks for this list serve.

, Mom to 81/2 44 " 39lbs, SGA, Asperger's, ADHD,

our " litlle professor "

[Guest guest]

We used to count Colin-'s calories - we went through several

packages of notebooks and even kept track of his diapers and how

much came out of him b/c that was a loss to his weight. With the

help of the Duocal, his calorie count was up to 3,000 a day and was

working for a while, but then over a long period of time, the gain

turned out to be 6 oz. overall. We didn't feel the nutritionist

offered us new information on how to get calories into our son so we

basically stuck with what worked. As I mentioned in another email,

cream cheese bars blended with Duacal and oil worked really well.

OUr son had trouble with meats and had no interest in them at all so

we lost out on those calories. Sweet potato blended with cream also

worked well and lots of Hershey vanilla shakes and Pediasure.

Welcome to the group.

M.

(mom to Colin- RSS 4 yrs. and Gillian 4 months non-RSS)

>

> Hello all,

> This is my first post to the group. My son is 8 1/2 years

old.

> We have been dealing with these multiple issues that everyone is

> discussing forever. Eating, failure to thrive, failure on growth

> hormone. We finally got up the courage (and money) to go to

chicago

> in july and it was life changing! We met Dr. H. and she met

.

> the first thing she said was " how could this child be allowed to

be

> this thin? " . andrew is 81/2, weighs 39 lbs and has been at that

> weight for at least 7 months. We have been thru feeding teams and

> g.i. specialists at all the city hospitals in Boston and they keep

> saying " we will be aggressive " and then " why don't you do a diet

> history for three days and we'll see " . It is so.... frustrating as

> all of you have said.

>

> It was wonderful meeting Dr. H. We just returned from New York

where

> we had a full fledged meeting with her. her summary was that

> needs to gain weight in the next three months or we will move to a

g-

> tube. My husband and I have been ready for that step for a while

> because I just don't know if we can continue to push, encourage,

and

> worry about intake. he does well but then nothing. Add to that his

> sensory defensiveness, Asperger's syndrome, gastric motility

delay,

> ADHD, and pancreatic disorder and he just doesn't like to eat or

see

> a need to eat.

> I guess I just wanted to touch base with kindred spirits. thanks

for

> listening and I'm sorry it's so long. Dr. H started on

> Periactin (we tried it before with little luck), Zantac, and

> previcid. I just almost feel like we came to late. It's not that I

> wasn't working at trying to get help with all this, we have been

> going to doctor's since before he was one. But noone gave us

answers

> until now. How do you all keep up with the calorie count? how can

I

> start? Does it really help to add on the weight when you do that?

> thanks for any input and thanks for this list serve.

>

> , Mom to 81/2 44 " 39lbs, SGA, Asperger's, ADHD,

> our " litlle professor "

[Guest guest]

Hi ,

My son is only 2 yrs old and luckily we get the majority of his

calories from his formula. We also use whole milk and carnation

instant breakfast. Both are 30 cal/ounce. I have not yet began to

count calories, but when he gets a little older and stops drinking so

many cups a day I will be looking for the same answers.

Coby was on periactin and did very well and when we stopped it his

weight fell from his growth curve. We are back on the periactin and

GH together and it has worked miricles. He has gained 2 lbs and 2 in

in 4 months. We are thrilled. If you want aggressive you've found

the right doc in Dr. H. hehehe

Sorry I can't be of much help to you, but I wanted you to know that

we are always hear to help out. Please, don't be a stranger and keep

us updated on and your family.

le, mom to:

Shye almost 10, Brock 8, and Coby (rss) & Carlee The twin terrors

going thru terrible 2's!!!

> >

> > Hello all,

> > This is my first post to the group. My son is 8 1/2 years

> old.

> > We have been dealing with these multiple issues that everyone is

> > discussing forever. Eating, failure to thrive, failure on growth

> > hormone. We finally got up the courage (and money) to go to

> chicago

> > in july and it was life changing! We met Dr. H. and she met

> .

> > the first thing she said was " how could this child be allowed to

> be

> > this thin? " . andrew is 81/2, weighs 39 lbs and has been at that

> > weight for at least 7 months. We have been thru feeding teams and

> > g.i. specialists at all the city hospitals in Boston and they

keep

> > saying " we will be aggressive " and then " why don't you do a diet

> > history for three days and we'll see " . It is so.... frustrating

as

> > all of you have said.

> >

> > It was wonderful meeting Dr. H. We just returned from New York

> where

> > we had a full fledged meeting with her. her summary was that

>

> > needs to gain weight in the next three months or we will move to

a

> g-

> > tube. My husband and I have been ready for that step for a while

> > because I just don't know if we can continue to push, encourage,

> and

> > worry about intake. he does well but then nothing. Add to that

his

> > sensory defensiveness, Asperger's syndrome, gastric motility

> delay,

> > ADHD, and pancreatic disorder and he just doesn't like to eat or

> see

> > a need to eat.

> > I guess I just wanted to touch base with kindred spirits. thanks

> for

> > listening and I'm sorry it's so long. Dr. H started on

> > Periactin (we tried it before with little luck), Zantac, and

> > previcid. I just almost feel like we came to late. It's not that

I

> > wasn't working at trying to get help with all this, we have been

> > going to doctor's since before he was one. But noone gave us

> answers

> > until now. How do you all keep up with the calorie count? how can

> I

> > start? Does it really help to add on the weight when you do that?

> > thanks for any input and thanks for this list serve.

> >

> > , Mom to 81/2 44 " 39lbs, SGA, Asperger's, ADHD,

> > our " litlle professor "

[Guest guest]

- I wish I could give you a huge hug!!!! Wow, 39 pounds at 8

1/2 is quite thin (well, not knowing his height). My daughter is

also 8 1/2 years old and now weighs 58 pounds.... (although on

Periactin and Growth hormone for 4 years). THe good news is that I

knew a 10 year old boy with RSS who weighed 21 pounds!

If you don't mind, I know two moms whose older children both had g-

tubes put in at late ages (one at age 7, I believe, and one at age

12??). I can ask them if it would be OK if I gave you their email

addresses. I think they would be a good resource for you. They

struggled for years to get their boys to gain weight, and nothing

every worked, and they kept waiting and waiting and hoping, until

they had to do the g-tube.

Let me know if you want me to connect you to them.

>

> Hello all,

> This is my first post to the group. My son is 8 1/2 years

old.

> We have been dealing with these multiple issues that everyone is

> discussing forever. Eating, failure to thrive, failure on growth

> hormone. We finally got up the courage (and money) to go to

chicago

> in july and it was life changing! We met Dr. H. and she met

.

> the first thing she said was " how could this child be allowed to

be

> this thin? " . andrew is 81/2, weighs 39 lbs and has been at that

> weight for at least 7 months. We have been thru feeding teams and

> g.i. specialists at all the city hospitals in Boston and they keep

> saying " we will be aggressive " and then " why don't you do a diet

> history for three days and we'll see " . It is so.... frustrating as

> all of you have said.

>

> It was wonderful meeting Dr. H. We just returned from New York

where

> we had a full fledged meeting with her. her summary was that

> needs to gain weight in the next three months or we will move to a

g-

> tube. My husband and I have been ready for that step for a while

> because I just don't know if we can continue to push, encourage,

and

> worry about intake. he does well but then nothing. Add to that his

> sensory defensiveness, Asperger's syndrome, gastric motility

delay,

> ADHD, and pancreatic disorder and he just doesn't like to eat or

see

> a need to eat.

> I guess I just wanted to touch base with kindred spirits. thanks

for

> listening and I'm sorry it's so long. Dr. H started on

> Periactin (we tried it before with little luck), Zantac, and

> previcid. I just almost feel like we came to late. It's not that I

> wasn't working at trying to get help with all this, we have been

> going to doctor's since before he was one. But noone gave us

answers

> until now. How do you all keep up with the calorie count? how can

I

> start? Does it really help to add on the weight when you do that?

> thanks for any input and thanks for this list serve.

>

> , Mom to 81/2 44 " 39lbs, SGA, Asperger's, ADHD,

> our " litlle professor "

[Guest guest]

Hi All,

Thank you for the responses. In some ways it was good to hear that

the Periactin is 'subtle " . I think I am always looking for OK, now

have an appetite like everyone else but it actually will be -

like. My additional complication is that is also lactose

intolerant. A few years back, we were recommended to add butter and

half and half to everything and he had constant diarrhea ( that was

before anyone did a lactose-tolerance test, of course). We have

started with all the meds, I am going to be VERY diligent this time!

I've also decided that I will serve him hamburgers and pizza three

meals a day if he will eat. I may also try the software program too,

that sounds wonderful. Should I aim for 2000 calories a day? Will

that put on weight over the course of a month or so?

Also, , I would love to talk with those Moms you mentioned.

Please e-mail me seperately with their contact information, it would

be wonderful to speak with them>

Thanks all, this is a great group! I could identify with the parents

who wrote about outsiders comments about our kids. I think it was

great though when (during our first meeting with Dr. H. in Chicago)

she said to , " now , you realize that you are the

smallest person in your class " . 's response was " NO I'm not.

ny and (names made up, I forgot the real ones) are much

smaller than me! " . Ahh, these kids are too cute!!

, Mom to , nonRSS SGA

[Guest guest]

Hi ,

One last comment.

GOOD LUCK. If you can get 2000 calories a day into a boy with

RSS, I think you'll have every parent on this list beating down your

door.

You might want to get a baseline measurement of your sons

calories and then aim for an average ( I do mean average ) of

25% to 30% above that. That should get him gaining weight. You

don't want him to gain too fast. That isn't good either.

You might want to talk with your nutritionist about caloric goals.

Nutrionists in my experience aren't too good at getting them to

eat more but they can be good at selecting high calorie foods

and setting goals.

As for eating only pizza and hamburg, that is just about my sons

diet but add in pasta by the pound.

By the way, you mentioned you took your son to a hospital in

Boston. which one? and where do you live? I live in Hollis, NH.

Did we meet at the RSS get together at Mark P's in Holiston?

Sorry if I don't remember. My mind is just mush lately.

Hope this helps and please keep us posted.

Ken M

>

> Hi All,

> Thank you for the responses. In some ways it was good to

hear that

> the Periactin is 'subtle " . I think I am always looking for OK, now

> have an appetite like everyone else but it actually will be

-

> like. My additional complication is that is also lactose

> intolerant. A few years back, we were recommended to add

butter and

> half and half to everything and he had constant diarrhea ( that

was

> before anyone did a lactose-tolerance test, of course). We have

> started with all the meds, I am going to be VERY diligent this

time!

> I've also decided that I will serve him hamburgers and pizza

three

> meals a day if he will eat. I may also try the software program

too,

> that sounds wonderful. Should I aim for 2000 calories a day?

Will

> that put on weight over the course of a month or so?

>

> Also, , I would love to talk with those Moms you

mentioned.

> Please e-mail me seperately with their contact information, it

would

> be wonderful to speak with them>

>

> Thanks all, this is a great group! I could identify with the

parents

> who wrote about outsiders comments about our kids. I think it

was

> great though when (during our first meeting with Dr. H. in

Chicago)

> she said to , " now , you realize that you are the

> smallest person in your class " . 's response was " NO

I'm not.

> ny and (names made up, I forgot the real ones) are

much

> smaller than me! " . Ahh, these kids are too cute!!

>

> , Mom to , nonRSS SGA

[Guest guest]

,

My son Max is allergic to milk, so he has even greater restrictions

with his diet. But it IS possible to boost calories without milk.

You just have to think outside that milk carton!

First of all, you may already know this, Fleishmann's margarine is

parve, meaning no dairy. It has the same amount of fat and calories

as butter. Also, you can use soy or rice milk. (We use rice

because Max's stomach is irritated by soy milk.) When Max needs to

put on weight, I add olive oil to just about everything. A little

here, a little there and it all adds up. Dr. H. uses the theory

about the cookie. To us, it is only 50 calories. But if you add

just that one cookie each day and change nothing else about your

caloric intake, in a week you have added 350 calories. Before you

know it, in about two months, you will have gained a pound.

Sneaking in those extra calories at various times during the day

will all add up.

If you need any other suggestions, just ask. I'm great with all the

dairy-free foods out there. Have you tried Tofutti? Max LOVES that!

Jodi Z

[Guest guest]

Hi Ken,

BIG OOPS! I realized my mistake after.. I sent the e-mail. my face

was red sitting at the screen. We were seen by GI and Growth &

Nutrition at Floating Hospital (Jeff Biller) and also by the

Nutrition clinic at Children's. 's endocrinologist is Dr.

Stuart brink in walthan, ma. do you have a good GI doctor in boston?

We have not attended any of the MAGIC get together's in Mass. I

really look forward to it now though! Thanks, karen

[Guest guest]

thanks, jodie

I will try the olive oil. I like the thoughts about the cookies too.

That could explain my weight gain also loves Tofuti,

especially the Cutties, ice cream sandwiches. It just makes it so

diffiuclt to have to miss calories by cutting out dairy. We do use

Lactaid products, which he can mostly tolerate. He was very sensitive

to the soy and we found out that a lot of people who are allergic to

dairy are also soy-intolerant. Now that he is older we are also

trying lactaid tablets but this really makes me nervous. I just don;t

know if it will also make him constipated. We went almost a year with

having bowel accidents (small amounts) to find that he was

completely impacted, partly due to gastric delay and the lactose

intolerance that made him constipated.

thanks again!

>

> ,

>

> My son Max is allergic to milk, so he has even greater restrictions

> with his diet. But it IS possible to boost calories without milk.

> You just have to think outside that milk carton!

>

> First of all, you may already know this, Fleishmann's margarine is

> parve, meaning no dairy. It has the same amount of fat and

calories

> as butter. Also, you can use soy or rice milk. (We use rice

> because Max's stomach is irritated by soy milk.) When Max needs to

> put on weight, I add olive oil to just about everything. A little

> here, a little there and it all adds up. Dr. H. uses the theory

> about the cookie. To us, it is only 50 calories. But if you add

> just that one cookie each day and change nothing else about your

> caloric intake, in a week you have added 350 calories. Before you

> know it, in about two months, you will have gained a pound.

> Sneaking in those extra calories at various times during the day

> will all add up.

>

> If you need any other suggestions, just ask. I'm great with all

the

> dairy-free foods out there. Have you tried Tofutti? Max LOVES

that!

>

> Jodi Z

[Guest guest]

Hi ,

No problem. I was just a little concerned you might try to accomplish

something that might not be posible.

My son does not have any G.I. issues so we are not seeing any

specialist for that. He seems to be doing very well. I think his RSS

is on the mild side. He does seem to have an appetite often but

doesn't eat much. He has many of the physical characteristics, slow

growth, curved fingers, thin lip, low ears etc.

We see Dr. Alyne Ricker at the Joslin Diabettes clinic. When we

started seeing her she worked out of Children's in Boston. Then she

transferred to Joslin across the street.

We did take to the Floating Hospital to get a second opinion.

We were very impressed with them.

Last, keep an eye on thei list. Sometime in April, Mark P in Holiston

has a social for RSS families. It is usually late in the month near

Arbour Day. I remember that because I am always so full from the

Arbour Day feast. Also, the big Arbour Day parades. Just too much

excitement all at ounce. -- Just kidding.

Hope this helps.

Ken M

>

> Hi Ken,

> BIG OOPS! I realized my mistake after.. I sent the e-mail. my face

> was red sitting at the screen. We were seen by GI and Growth &

> Nutrition at Floating Hospital (Jeff Biller) and also by the

> Nutrition clinic at Children's. 's endocrinologist is Dr.

> Stuart brink in walthan, ma. do you have a good GI doctor in

boston?

> We have not attended any of the MAGIC get together's in Mass. I

> really look forward to it now though! Thanks, karen