Weight to Height Issue

[Guest guest]

Hi All,

Could someone please help me to figure this out? I have been reading

the posts and not really getting anywhere in my head with the issue.

Noah is 3 yrs old, 32.5 inches, 19 lbs. Is the weight to height

15%? I don't get how to figure that out! Does he need catch up

weight before GH? When I mentioned that to the endo, he wasn't

concerned which I think might be a lack of RSS knowledge.

Noah is having the GI series in a week. Is there anything special

they should look for that they wouldn't normally? Should there be

special precautions taken for him, the nurse in the doctor's office

was asking us? She did alert whoever is doing this that Noah is RSS,

but that doesn't mean that they will know anything. We gave the

doctors office the one letter from DR. H. that says about IV etc and

I'll make sure I take that with me then too.

Any suggestions and answers about the weight issued will be greatly

appreciated!

Thanks

Dawna

[Guest guest]

>

> Hi All,

>

> Could someone please help me to figure this out? I have been

reading

> the posts and not really getting anywhere in my head with the issue.

>

> Noah is 3 yrs old, 32.5 inches, 19 lbs. Is the weight to height

> 15%? I don't get how to figure that out! Does he need catch up

> weight before GH? When I mentioned that to the endo, he wasn't

> concerned which I think might be a lack of RSS knowledge.

>

> Noah is having the GI series in a week. Is there anything special

> they should look for that they wouldn't normally? Should there be

> special precautions taken for him, the nurse in the doctor's office

> was asking us? She did alert whoever is doing this that Noah is

RSS,

> but that doesn't mean that they will know anything. We gave the

> doctors office the one letter from DR. H. that says about IV etc

and

> I'll make sure I take that with me then too.

>

> Any suggestions and answers about the weight issued will be greatly

> appreciated!

>

> Thanks

> Dawna

>

Dawna,

Hi. My name is Reah and chloe,my daughter, is 27 months

old. She was diagnosed with rss when she was 9 months old. Since then

she has had pt which she no longer needs and she is taking periactin

and has recently started groth hormone on her second birthday. Should

I have waited? She is 17Lbs and 29 inches tall. I just joined this

today and I really don't know what I am doing,I'm not even quite sure

how to post my own message.Silly,huh?

Thank you,

Reah

[Guest guest]

Hi Dawna

I know everyone says it is so important to get the weight up but I also sense

your frustration. Adam never had a feeding tube, and has never had periactin and

I do know that when we saw Dr. H. the summer before last she never commented on

his weight (as in it was too light, maybe he needed periactin; she never said

ANYTHING). I have to figure out his weight for height ratio this weekend so I

can be more informed but I really want to help you in some way to relax.

With all kids (RSS or " normal " ) if you spend to much time obsessing about the

food, they will give the parents a harder time. That's just the nature of the

beast so to speak when dealing with kids. It seems to be inbred in them somehow,

to sense when we are panicked about something and they will do the exact

opposite to exert their independence. It is so frustrating. I know, I remember

reading parenting book after parenting book about not making meal time a battle

and that was with the so called " normal " kids!!!!

Whatever Noah likes to eat, have it around the house. I don't know if you were a

member when we went through our discussion AGAIN about the number of us who

" allow " our kids to eat infront of the t.v. Adam has been eating every single

meal in front of the t.v. since we joined this list. Over the years he has

developed a " Pavlov " type of pairing " watch t.v. need to eat " . Last night he

took some left over scalloped potatoes out of the fridge and nuked them to eat

while watching t.v. around 10 p.m.!!!!! I know some feel t.v. is the big bad

influencer of negativity but for us it works like nothing else. You may find

something better. But the point is, instead of stressing over how much he eats

at the meals, try altering what you do during the meals or in-between meals. You

know in all honesty if Adam told me he would only eat sitting naked on our roof

while he stood on his head??? I would build the ladder myself!!!!! The food has

to go in.

So if you have tried all the foods you can think of that are good and high in

calories and that isn't enough, try anything else.

I have said this so many times I'm sure the veterans hate to read it one more

time, but I have a drawer in my kitchen, it's the lowest one and rather large

(but a cupboard will do with a low shelf) and in it were all of the foods that

Adam liked. There were Pringles potato chips (years ago someone said they were

the " best " of all chips and I have lived by that rule) or pudding cups, or fruit

cups, or crackers, or cookies, or some chocolate, or anything!! and that was

" Adam's drawer " . Also there were some bowls and spoons (I didn't want him

climbing on the counters back then!!!) and he could help himself whenever he

wanted. And you know what? He did. He loved the independence so much when he was

4 or 5 or 6 years old, he was always in there getting himself something to eat.

He felt in control.

Also you could just have a small plate on the coffee table where Noah is playing

with some food. You should see my living room carpet!!!!! It is horrible after

years and years of Adam eating in there. But you know what?? I don't care, the

boy was eating and that was all I cared about back then. Now?? I bought a real

nice area rug and I have put it on top of my wall to wall carpet (in front of

the t.v.) that Adam has stained up horribly over the years. But I really don't

care about the carpet, I was just glad he was eating.

Try to offer his foods in a variety of situations. Not always at the table. I

know Adam always comes home from his dad's place just starving. He use to eat

for an hour straight when he got home because his father was on this old fashion

thing where " kids can't eat an hour before dinner " might spoil the dinner " and

then the old stand by " you have to finish what is on your plate to get more

potatoes " {UGH!! IF all Adam wants one night is potatoes I give him the pot!!!!

I " m not lying, he has taken THE POT and sat in front of the t.v.!!!!) or his

father says " no food after 7 p.m. " I hate that he does that but there is no

talking sense with him but I see how starving Adam is when he gets home. He

hates it. (we even went through a faze where he was hiding food from HERE to

take to his father's and hide it in his room THERE to eat in the evening!!! How

sad is that??)

Ok this is becoming a book. I know you are concerned. Just know that you have a

lot of time before it's too late to start GH. I know we would all love every

single moment of grow time with the GH. You should email Leah if you can, she

finally got her daughter to the catch up growth stage and she thought, at one

time, she would never get Olivia there. They live in Alberta.

You have some great foods that you are using. Now try to vary when and where you

let Noah eat this stuff and see if that helps somewhat. And don't (or at least

try not to ) let Noah feel the anxiety, he will not eat just to exercise his

independence.

But think over that feeding tube idea carefully. It's a heavy duty step for a

few extra calories. Try other things first.

Talk to you soon

Debby

Re: Weight to Height Issue

Patty,

Thank you ... that does help too! Everyone adds a new piece to the

puzzle. I know that I need to wait for Noah to gain a little weight

before starting GH (the 15% thing), but you made good points too and

I do remember reading that in the letter to all RSS parents from Dr.

H. The way you said it though has made it a little clearer. I do

want to try the Periactin as Noah has been the same weight for at

least 6 mos. I can't imagine how I can get him to gain more without

it, as we put butter on everything, and peanut butter whenever we

can, give him crackers and food whenever we can, I am at a loss

otherwise. I am really hoping (as I have said quite a few times now)

that our new ped will be good with all this to help take a little of

this stress off. I can't wait to hear from his office and get an

appointment. I've been trying to call my doctors office all week to

get more infor about the GI series that Noah is having done on

Thursday and to make sure they did the referral to the ped. I think

that one of the big fears I have had is waiting too long for the GHT,

I was afraid we were missing important growing, but I do realize now

that we need to do more before starting. Both my husband and I have

been wondering if Noah needs some kind of feeding tube, not wanting

it, but worried that we haven't done enough. This will be another

issue I wish to solve with the help of the ped and testing etc.

Thank you so much for your information! It's funny I came on this

site mostly to talk to people with kids around Noah's age ... looking

for comfort that they were the same size and all ... being so

discouraged by Noah being sooooo much smaller than kids his own age

and even younger than him, always comparing, yet trying so darn hard

not to because I knew he was special. I have gotten so much more ...

some contact with people with kids the same age, but the knowledge,

experience and wealth of information from the parents of older kids

too. You people cannot know (well you might) just how much value

that has.

Thank you TOO much!

Dawna

> >

> > Hi All,

> >

> > Could someone please help me to figure this out? I have been

reading

> > the posts and not really getting anywhere in my head with the

issue.

> >

> > Noah is 3 yrs old, 32.5 inches, 19 lbs. Is the weight to height

> > 15%? I don't get how to figure that out! Does he need catch up

> > weight before GH? When I mentioned that to the endo, he wasn't

> > concerned which I think might be a lack of RSS knowledge.

> >

> > Noah is having the GI series in a week. Is there anything special

> > they should look for that they wouldn't normally? Should there

be

> > special precautions taken for him, the nurse in the doctor's

office

> > was asking us? She did alert whoever is doing this that Noah is

RSS,

> > but that doesn't mean that they will know anything. We gave the

> > doctors office the one letter from DR. H. that says about IV etc

and

> > I'll make sure I take that with me then too.

> >

> > Any suggestions and answers about the weight issued will be

greatly

> > appreciated!

> >

> > Thanks

> > Dawna

> >

>

[Guest guest]

Thanks Debby!

I was laughing at some of your comments and then teary at the end. I

was thinking about the tv thing alot since a comment from Ken to

someone about eating in front of a video or such. Noah still sits in

his swing in the living room and it is a good time for his eating.

All that you have said just confirms for me some of what I have been

doing and extends it too ... like I will never again lock that

cupboard that I have, that Noah can get into, where we keep our

snacks. He can get the fish crackers, bear paws, pudding, fruit

cups, toddler cookies, cheerios whatever his little heart desires

whenever he desires it. I used to lock it up closer to supper, but I

won't again! And I know what you mean about the more potatoes ...

you want them you got them! Even at the daycare that he has only

been to twice so far ... he wouldn't eat the corn or chicken but

wanted another scoop of potatoes and they gave it to him. They are

great there with wanting to help with the food. I have emphasized to

them that even if he just wants crackers ... they're in his bag and

please give them to him. He knows a few signs (sign language) and

they were willing to learn them so that they know what he wants ...

milk, juice, cookie, more and help.

Well good thing I have hardwood in the living room eh lol and our dog

is like a hoover ... the only problem with that is that I have to

keep an eye on what Noah is eating and what the dog is getting or

being fed. Moe (our dog) certainly knows who to sit by.

And that is what I love about this site ... knowing that there are

Olivia's and others out there that have done it ... it is sooooo good

to know. I will contact Leah to get more details of how things went

etc ... if she used Periactin or just what!

Geese Deb I wish you didn't have such a battle with your EX. Life

would be so much easier. Some people just don't get it and even

though it's not great to have to sneak the snacks ... good luck to

you both! Happy eating Adam! You know, I know it was killing my

brother to watch me with Noah on Thanksgiving when we were there

cause he is about 15 years older than me and has always been the

clean up your plate or no dessert and well just clean it up anyway or

stay at the table until it's gone ... Noah didn't even come to the

table and then I gave him a piece of cake ... We had been giving him

pieces of ham as supper was being prepared and then stopped because I

wanted him to sit at the table and eat. He didn't and I was kicking

myself for not letting him have all that he wanted before then. Live

and learn and learn from all of you.

THANK YOU! Keep it coming ... the more infor the better. Since yours

and the other post I feel much better ... I'll still worry of course

and do what I can but you people have sure made it a little easier.

I think I have your like of the !!!!! and I also like ... have you

noticed?

Dawna

> > >

> > > Hi All,

> > >

> > > Could someone please help me to figure this out? I have been

> reading

> > > the posts and not really getting anywhere in my head with the

> issue.

> > >

> > > Noah is 3 yrs old, 32.5 inches, 19 lbs. Is the weight to

height

> > > 15%? I don't get how to figure that out! Does he need catch

up

> > > weight before GH? When I mentioned that to the endo, he

wasn't

> > > concerned which I think might be a lack of RSS knowledge.

> > >

> > > Noah is having the GI series in a week. Is there anything

special

> > > they should look for that they wouldn't normally? Should

there

> be

> > > special precautions taken for him, the nurse in the doctor's

> office

> > > was asking us? She did alert whoever is doing this that Noah

is

> RSS,

> > > but that doesn't mean that they will know anything. We gave

the

> > > doctors office the one letter from DR. H. that says about IV

etc

> and

> > > I'll make sure I take that with me then too.

> > >

> > > Any suggestions and answers about the weight issued will be

> greatly

> > > appreciated!

> > >

> > > Thanks

> > > Dawna

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

Hi Dawna

Yes I noticed you like the !!!! and the...... like I do! I tend to

write emails like I talk!

I should say, just to cover my butt () that in some cases feeding

tubes are critical. I never want anyone to read my email and think I

am dimissing the importance or need of feeding tubes. That wasn't my

point at all, I sure hope no one mistook my email as insinuating

these people (God love them!) who have to use feeding tubes just

didn't try hard enough. No in some cases it is of major need. I was

just telling you 'this mom's' experience in the feeding area.

I know that Leah didn't use a feeding tube and Olivia was small!! But

as for the periactin? I honestly can't remember, but do ask her for

some hints.

I have had a horrible time over the years with people who don't

understand. As you mentioned, they have this narrow view that kids

should " do " certain things when eating and not do others. Honestly!!

It's been horrible. One good thing about getting divorced though, if

I had to spend these last years with my mother in law watching me

feed Adam.....well I would have killed the woman years ago!! She

would have been on my case and nagging me all the time.We divorced

just before Adam was 3, so thankfully I didn't have to listen to HER

crap all the time!!!! (I knew there was a silver lining!!!LOL)

One thing I forgot to mention, and it is the cause of my stained

carpet....Adam has to have KETCHUP on everything. And I mean LOTS and

LOTS of it. We go through a huge bottle (family size) about every 3

weeks. And he is the only one that eats it! That and parmesan cheese.

I don't know what the calorie content is on the paremsan cheese but I

know that ketchup is tomato, water and sugar so hey pile it on!!!!

Some days it feels like the world is going to end soon, but I promise

you somehow, someway, things do work out in the end. It may not seem

it at the time, but it does. I am so thankful that Adam never

required a feeding tube. Now if I had known when he was little??

Maybe. But that option was never available. But wieght wise, Adam has

not suffered. He is perfectly porportionate. Now the height?? Ah I

wish there were more, but that is because we started the GH at the

age of 8. I think 5 or 6 would have been ideal. So you do have time

for Noah.

The swing is where he eats?? That's neat. I loved our swing, and lend

it out (to this day) to anyone. It was the best. But I never thought

to have him eat in it. Mind you, I didn't even know there was

anything wrong with him when he still fit in that swing!!

You know I will be interested to see what others on the list say

about the snacking whenever. I do know it's not good to give the

juice before a " dinner " because they fill up on it. But for me, my

mantra was and still is " I dont' care when, how, why or where....Adam

wants to eat, he gets it. " He has often had snacks right befroe

dinner. He gets hungry while I am cooking. So I let him snack,and

then he is not hungry for dinner, but whtaever I made him for dinner

is saved (hence how he ended up with scalloped potatoes at 10 p.m. at

night) He always goes back to that food later on. It's in the fridge,

and he knows it's there. It works for us.

Good luck and I am so glad you found this place. My life was changed

forever once I came here. Suddenly I was no longer alone, and even

last week my mom was commenting on how wonderful it is that I have

met so many really super nice and kind people through this list. She

came to Chicago with us both times and she was just gobsmacked at how

down to earth, and considerate and friendly everyone was. We really

are like a family, even when we get together (even shy me who refuses

to read the name tags!!!!! People just walk around asking " any one

seen Debby B from Canada?? " and sooner or later someone will point to

me and THEN I get to meet people!! LOL I am such a suck with those

name tags!) OH well that's an email for antoher day.

Take care.

Debby

> > > >

> > > > Hi All,

> > > >

> > > > Could someone please help me to figure this out? I have

been

> > reading

> > > > the posts and not really getting anywhere in my head with

the

> > issue.

> > > >

> > > > Noah is 3 yrs old, 32.5 inches, 19 lbs. Is the weight to

> height

> > > > 15%? I don't get how to figure that out! Does he need

catch

> up

> > > > weight before GH? When I mentioned that to the endo, he

> wasn't

> > > > concerned which I think might be a lack of RSS knowledge.

> > > >

> > > > Noah is having the GI series in a week. Is there anything

> special

> > > > they should look for that they wouldn't normally? Should

> there

> > be

> > > > special precautions taken for him, the nurse in the

doctor's

> > office

> > > > was asking us? She did alert whoever is doing this that

Noah

> is

> > RSS,

> > > > but that doesn't mean that they will know anything. We

gave

> the

> > > > doctors office the one letter from DR. H. that says about

IV

> etc

> > and

> > > > I'll make sure I take that with me then too.

> > > >

> > > > Any suggestions and answers about the weight issued will be

> > greatly

> > > > appreciated!

> > > >

> > > > Thanks

> > > > Dawna

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Deb,

I personally did not take it that you meant anything bad at all about

feeding tubes ... different kids need different things and so far

Noah doesn't seem to have the stomach problems and sickies that lots

of the others do (touch wood). I am getting him checked though to

make sure he doesn't have silent reflux or delayed emptying.

Yes I'm not sure how much longer we'll have that swing as he can

touch the ground now ... he backs up and lets it go to swing harder,

we have rarely turned it on since he was very little as he likes to

make it go on his own.

Hope you can make it to the next Chicago and I hope that we can too!

Dawna

> > > > >

> > > > > Hi All,

> > > > >

> > > > > Could someone please help me to figure this out? I have

> been

> > > reading

> > > > > the posts and not really getting anywhere in my head with

> the

> > > issue.

> > > > >

> > > > > Noah is 3 yrs old, 32.5 inches, 19 lbs. Is the weight to

> > height

> > > > > 15%? I don't get how to figure that out! Does he need

> catch

> > up

> > > > > weight before GH? When I mentioned that to the endo, he

> > wasn't

> > > > > concerned which I think might be a lack of RSS

knowledge.

> > > > >

> > > > > Noah is having the GI series in a week. Is there anything

> > special

> > > > > they should look for that they wouldn't normally? Should

> > there

> > > be

> > > > > special precautions taken for him, the nurse in the

> doctor's

> > > office

> > > > > was asking us? She did alert whoever is doing this that

> Noah

> > is

> > > RSS,

> > > > > but that doesn't mean that they will know anything. We

> gave

> > the

> > > > > doctors office the one letter from DR. H. that says about

> IV

> > etc

> > > and

> > > > > I'll make sure I take that with me then too.

> > > > >

> > > > > Any suggestions and answers about the weight issued will

be

> > > greatly

> > > > > appreciated!

> > > > >

> > > > > Thanks

> > > > > Dawna

> > > > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >