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Re: Informative Dr. H appt. ~LONG~

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Jodi,

Yes, it is Max who is on Zelnorm. He has been taking it for about 4 months or

so. I think

it has worked well for him. He was having those awful hiccups and severe

delayed

emptying. I'm not sure it helped the hiccups, but the emptying part does work

somewhat.

His stomach is still distended, especially after eating, but it is better.

Now, however, we are having some trouble with Max. He has started complaining

terribly

of pulling in his gut. I am wondering if the Zelnorm is the culprit. He did

complain of this

a bit before the med, though, so I am not sure. It's a good thing he is seeing

Dr. H. on

Tuesday. Too bad I can't be there, though. is taking him.

Interesting about the weight issue as well. All of a sudden Max has put on a

lot of weight

- like 12 pounds since his last visit. He is quite distressed about this.

(Wondering if that

stress is affecting his gut and that has something to do with his

discomfort????) He has

grown at least an inch and has developed A LOT of muscle, so I'm sure some of

that

weight is from muscle. And it's hard to tell if his stomach is too fat or too

distended. It's

really hard and bloated, so it may be a combination of the two..... I'm sure my

husband

and Max will hear all about it. Sigh.

As for the gh resistance, Max had/has that, too. He has to be on a larger dose

of gh/kilo

as a result. No mention of insulin resistance, however. I'm sure she will talk

about it on

Tuesday, though. Gosh, who would have thought that my son who had to be

force-fed

would now be facing issues of possibly eating too much?

Jodi Z

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I know what you are saying, Jodi. I feel the same way about what

is going through. We had to do everything to even give him

his tube feeds. He would not tolerate these well for the longest

time. Even on J tube feedings now, he still gags and spits up. But,

we had to work so hard at getting a certain amount of calories in

him, now it is like, " Whoa, let's reduce his feeds! " Ugh, it is so

hard.

Dr. H. asked me if 's stomach is distended in the mornings when

he is doing all his gagging and spitting. I told her I wasn't sure

because his stomach looks like a balloon to me anyway. But, there

are times when it does feel sort of hard. Is that what would

indicate a distension? I just know he is really having constipation

issues right now and I am hoping this Zelnorm helps everything move a

little better. Thanks for the insight on it. I will carefully watch

him as we get him started on it.

JR

>

> Jodi,

>

> Yes, it is Max who is on Zelnorm. He has been taking it for about

4 months or so. I think

> it has worked well for him. He was having those awful hiccups and

severe delayed

> emptying. I'm not sure it helped the hiccups, but the emptying

part does work somewhat.

> His stomach is still distended, especially after eating, but it is

better.

>

> Now, however, we are having some trouble with Max. He has started

complaining terribly

> of pulling in his gut. I am wondering if the Zelnorm is the

culprit. He did complain of this

> a bit before the med, though, so I am not sure. It's a good thing

he is seeing Dr. H. on

> Tuesday. Too bad I can't be there, though. is taking

him.

>

> Interesting about the weight issue as well. All of a sudden Max

has put on a lot of weight

> - like 12 pounds since his last visit. He is quite distressed

about this. (Wondering if that

> stress is affecting his gut and that has something to do with his

discomfort????) He has

> grown at least an inch and has developed A LOT of muscle, so I'm

sure some of that

> weight is from muscle. And it's hard to tell if his stomach is

too fat or too distended. It's

> really hard and bloated, so it may be a combination of the

two..... I'm sure my husband

> and Max will hear all about it. Sigh.

>

> As for the gh resistance, Max had/has that, too. He has to be on a

larger dose of gh/kilo

> as a result. No mention of insulin resistance, however. I'm sure

she will talk about it on

> Tuesday, though. Gosh, who would have thought that my son who had

to be force-fed

> would now be facing issues of possibly eating too much?

>

> Jodi Z

>

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hey jodir!!

i am so glad you made it there and back safe and sound!! it sounds

like you got alot out of the appt and that you guys have a plan. i

believe maddie is also on the zelnorm now?!?! ((HUGS)) hes come a

long way!!

jodie c

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Thanks Jodie! I appreciate your support. And, yes, he has come so

far.

What is the plan with ? I don't know if I missed a post

from you, but I haven't heard when you are doing the test.

JR

>

> hey jodir!!

> i am so glad you made it there and back safe and sound!! it sounds

> like you got alot out of the appt and that you guys have a plan. i

> believe maddie is also on the zelnorm now?!?! ((HUGS)) hes come a

> long way!!

>

> jodie c

>

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Jodi - as you know from our discussions on the phone yesterday - I

am SO happy that your appointment went so well with Dr. H

yesterday. It sounds like you had quite an informative and very

helpful session (albeit maybe a little tiring) but, fantastically

great nonetheless. I'm so glad to hear that you are have things to

look forward to but also the guidance you need to make sure

is on the right path. I appreciate your comments about the weight

issues as I am struggling with wondering if Ian is getting a

little " too much " in the way of calories! (Never thought I'd say

that either). It's so great to have such great direction for

and as always, I want you to keep us posted so that we can be there

for you on this journey with . You have been through SO much

and sometimes I sit here with the boys, and especially when I'm

sitting with Ian during a feeding, and I think about you and many

others on this listserve. You have to deal with gagging, retching,

sometimes vomiting, reflux, delayed emptying, medicines, chewing

issues......I just look at Ian during all those thoughts and it

helps me realize that we (my family) have to continue to pray for

all of you and put things in perspective because it's all of you

that needs an extra hug or two. You are doing such a fantastic job

Jodi. You should really be incredibly proud of yourself - I know

I'm proud of you. You are one terriffic mom! Hugs to you.

- H

>

> Hey everyone,

> I just wanted to let all of you know that I am soooo behind on

> reading the posts, and I plan to get to them at my first

> opportunity. In scanning I saw some posts about Ian and

> Salem that I need to read, and I am sure there are many I will

> respond to. I just wanted to let you all know that we are still

> here, but just ever so busy. We had our Dr. H appointment

yesterday

> and it was an all day thing. We flew from Ohio to New York in a

> whole day and it proved to be very tiring on , Mom, and I.

> But, you know, is only 3 1/2, and I could not expect any

> better behavior from him. He was absolutely wonderful through the

> entire trip. And, the poor boy had to get up at 3:30 am and was

in

> such great spirits and he was so good the whole time. At the very

> end of the trip he was so tired and ended up sleeping much of the

way

> back, but he needed it as he was getting a little slap happy and

then

> grumpy, but nothing you wouldn't expect from a 3 1/2 year old. He

> actually did better than what I would have thought. He never

ceases

> to amaze me in what he can tolerate.

>

> Okay, so this is becoming too long already, but just to let you

know

> what Dr. H said about him.....First, he is still way too chunky.

She

> is further reducing his tube feedings to where he will be fed for

> only 12 hours overnight from 8:30 pm-8:30 am. She is putting him

on

> Zelnorm to hopefully get things moving in his system better. He

> still gags every morning and even spits up the majority of the

> time. Even on J tube feedings he is doing this! She is hoping

the

> Zelnorm will keep things moving in his belly a little better and

also

> aid in constipation since he has been having trouble with that.

She

> is having us resume his GH and says she is wanting that to slim

him

> down, but also have a bigger appetite to eat better while he is

off

> his tube. He only eats baby food right now and she wants him to

> start eating other things. has such trouble with chewing

> things and we are working with a therapist right now to get him to

be

> able to manage foods better, but it is a SLOW process. But, we

will

> try steamed veggies, and hopefully other things. She suggested

> tuna. I can't see him eating that, as he can't really even manage

a

> piece of macaroni (which she also wants him to eat), but we shall

> keep trying. She looked at 's labs and they are indeed

showing

> that he is insulin resistant and GH resistant. I am not clear

> exactly what this means for , but I think she said that

> slimming him down will help both of these as they are tied to one

> another through Leptin levels which is tied to the glucose in your

> body. So, I am assuming that if we can get the insulin resistance

> under control, that that will help bring down his high IGF and

DHEA

> levels. I am so confused on all of this and if any of you have a

> grasp on these things, feel free to offer advice or

> direction!!! ;o) I think my biggest thing right now will be to

get

> him slimmed down and to stop giving him so much sugar. We will be

> seeing her again in April as she says she needs to keep a VERY

close

> eye on him right now. And, she stressed that as only Dr. H.

could,

> and when she says these things, you know it is a big deal. So, I

> will do exactly what she has told us to do and pray that he starts

to

> drop all the fat he has on him. Oh my gosh, she pulled up some

fat

> spots and it is ridiculous how much he has. Her and I discussed

what

> looked like at our first visit with her. As some of you

know,

> was severely malnourished at 17 months of age, even though

he

> was on a feeding tube. She was saying that this tends to be the

> case. She says they go from very skinny and over a period of time

> she says it is like someone blows them up full of air. You know,

it

> is such a fine and hard line to manage. For so long,

needed

> so many extra calories just to gain weight, now he needs to slim

down

> to keep him on a healthy path. Ugh, it is so frustrating and hard

to

> know what to do, but that is why I have her managing his case. I

> just wouldn't get this from local doctors. They are all saying

how

> great looks and, blah, blah, blah. No one has ever

mentioned

> that he is too big or anything!!! Nothing about the blood sugar

> issues or anything. It is amazing. Gosh, where would he be if I

> wasn't seeing her? Too scary for me to even think about since we

are

> dealing with such complex issues right now! Oh, she is also

having

> me add Benefiber to his diet to help with constipation, too. He

> isn't getting any fiber from his formula, so she wants to try him

on

> this. She said no to trying Periactin right now since is

> still having trouble managing his tube feedings (Referring to the

> gagging and spitting up). She is hopeful the Zelnorm will help.

> Does anyone give their kids Zelnorm? I was talking to

Earley

> this morning and she was saying that she thinks Max Z. is on it??

I

> was thinking someone was, but wasn't sure. Anyone with advice on

> this and how it effects the kids and if it really works, would be

> welcome info!

>

> Well guys, sorry this post got to be so long. I hope you all

don't

> mind me sharing all of this information with you. I am very

worried

> about the insulin resistance. I wanted to let you all know that

it

> is a real potential problem for our kids if they get too big.

And,

> it is so hard to know when that is for each child, as they are all

> different. Dr. H. says that weight for height should be between

the

> 10th and 25th percentile. Well, she gives that window for a

reason.

> Each child will be different. One may be at the 25% and be fine,

but

> another may be there and be too big. That would be . The

25%

> is too big for him. So, I just wanted to let you all know how

very

> different each child will be and to know that insulin resistance

is a

> real issue!

>

> Jodi R.

> Mommy to Chunky-butt, as described by Dr. H!!! ;o)

>

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Jodi - how is Max doing today with his tummy? You know I will be

waiting with baited breath to hear how his appointment is on

Tuesday. Keep us posted - okay?

- H

>

> Jodi,

>

> Yes, it is Max who is on Zelnorm. He has been taking it for about

4 months or so. I think

> it has worked well for him. He was having those awful hiccups and

severe delayed

> emptying. I'm not sure it helped the hiccups, but the emptying

part does work somewhat.

> His stomach is still distended, especially after eating, but it is

better.

>

> Now, however, we are having some trouble with Max. He has started

complaining terribly

> of pulling in his gut. I am wondering if the Zelnorm is the

culprit. He did complain of this

> a bit before the med, though, so I am not sure. It's a good thing

he is seeing Dr. H. on

> Tuesday. Too bad I can't be there, though. is taking

him.

>

> Interesting about the weight issue as well. All of a sudden Max

has put on a lot of weight

> - like 12 pounds since his last visit. He is quite distressed

about this. (Wondering if that

> stress is affecting his gut and that has something to do with his

discomfort????) He has

> grown at least an inch and has developed A LOT of muscle, so I'm

sure some of that

> weight is from muscle. And it's hard to tell if his stomach is

too fat or too distended. It's

> really hard and bloated, so it may be a combination of the

two..... I'm sure my husband

> and Max will hear all about it. Sigh.

>

> As for the gh resistance, Max had/has that, too. He has to be on

a larger dose of gh/kilo

> as a result. No mention of insulin resistance, however. I'm sure

she will talk about it on

> Tuesday, though. Gosh, who would have thought that my son who had

to be force-fed

> would now be facing issues of possibly eating too much?

>

> Jodi Z

>

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,

Thank you so much for your encouragement and words of support. YOU

are the one that is so incredibly awesome. And, like I told you on

the phone the other day, you are one hell of a mom to your two boys.

They are sooooo lucky to have you for a mom. You are very connected

with them and you give them so much of yourself. And, don't

underestimate what you are dealing with. Yes, we ALL have issues to

deal with, but yours are no less important than anyone elses. YOU,

my dear, are dealing with a lot, too. Really, this tube stuff is all

very new to you, even though you and I have discussed it before.

And, I have tried to ease your fears and worries about it. BUT, Ian

is having the infection problems right now ON TOP of YOU trying to

get used to the tube being there in the first place. So, ,

don't downplay what you are having to deal with. It is hard and

scary. I haven't read any posts from you further than this one, but

I wanted to respond to this post. You are one heck of a friend and I

am so thankful that we are as close as we are. I only wish I could

help you and be there for you as much as you have been there for me.

But, I feel I may fall short sometimes. I wish I could help you

right now because I know you are going through a hard time. But, it

will get better soon I know that isn't very comforting though. But,

thanks for being such a great person, mom and friend....and wonderful

supporter to so many on this list. So many of us look forward to

your thoughtfulness and outpouring of love!

One grateful friend,

JR

> >

> > Hey everyone,

> > I just wanted to let all of you know that I am soooo behind on

> > reading the posts, and I plan to get to them at my first

> > opportunity. In scanning I saw some posts about Ian and

> > Salem that I need to read, and I am sure there are many I will

> > respond to. I just wanted to let you all know that we are still

> > here, but just ever so busy. We had our Dr. H appointment

> yesterday

> > and it was an all day thing. We flew from Ohio to New York in a

> > whole day and it proved to be very tiring on , Mom, and I.

> > But, you know, is only 3 1/2, and I could not expect any

> > better behavior from him. He was absolutely wonderful through

the

> > entire trip. And, the poor boy had to get up at 3:30 am and was

> in

> > such great spirits and he was so good the whole time. At the

very

> > end of the trip he was so tired and ended up sleeping much of the

> way

> > back, but he needed it as he was getting a little slap happy and

> then

> > grumpy, but nothing you wouldn't expect from a 3 1/2 year old.

He

> > actually did better than what I would have thought. He never

> ceases

> > to amaze me in what he can tolerate.

> >

> > Okay, so this is becoming too long already, but just to let you

> know

> > what Dr. H said about him.....First, he is still way too chunky.

> She

> > is further reducing his tube feedings to where he will be fed for

> > only 12 hours overnight from 8:30 pm-8:30 am. She is putting him

> on

> > Zelnorm to hopefully get things moving in his system better. He

> > still gags every morning and even spits up the majority of the

> > time. Even on J tube feedings he is doing this! She is hoping

> the

> > Zelnorm will keep things moving in his belly a little better and

> also

> > aid in constipation since he has been having trouble with that.

> She

> > is having us resume his GH and says she is wanting that to slim

> him

> > down, but also have a bigger appetite to eat better while he is

> off

> > his tube. He only eats baby food right now and she wants him to

> > start eating other things. has such trouble with chewing

> > things and we are working with a therapist right now to get him

to

> be

> > able to manage foods better, but it is a SLOW process. But, we

> will

> > try steamed veggies, and hopefully other things. She suggested

> > tuna. I can't see him eating that, as he can't really even

manage

> a

> > piece of macaroni (which she also wants him to eat), but we shall

> > keep trying. She looked at 's labs and they are indeed

> showing

> > that he is insulin resistant and GH resistant. I am not clear

> > exactly what this means for , but I think she said that

> > slimming him down will help both of these as they are tied to one

> > another through Leptin levels which is tied to the glucose in

your

> > body. So, I am assuming that if we can get the insulin

resistance

> > under control, that that will help bring down his high IGF and

> DHEA

> > levels. I am so confused on all of this and if any of you have a

> > grasp on these things, feel free to offer advice or

> > direction!!! ;o) I think my biggest thing right now will be to

> get

> > him slimmed down and to stop giving him so much sugar. We will

be

> > seeing her again in April as she says she needs to keep a VERY

> close

> > eye on him right now. And, she stressed that as only Dr. H.

> could,

> > and when she says these things, you know it is a big deal. So, I

> > will do exactly what she has told us to do and pray that he

starts

> to

> > drop all the fat he has on him. Oh my gosh, she pulled up some

> fat

> > spots and it is ridiculous how much he has. Her and I discussed

> what

> > looked like at our first visit with her. As some of you

> know,

> > was severely malnourished at 17 months of age, even though

> he

> > was on a feeding tube. She was saying that this tends to be the

> > case. She says they go from very skinny and over a period of

time

> > she says it is like someone blows them up full of air. You know,

> it

> > is such a fine and hard line to manage. For so long,

> needed

> > so many extra calories just to gain weight, now he needs to slim

> down

> > to keep him on a healthy path. Ugh, it is so frustrating and

hard

> to

> > know what to do, but that is why I have her managing his case. I

> > just wouldn't get this from local doctors. They are all saying

> how

> > great looks and, blah, blah, blah. No one has ever

> mentioned

> > that he is too big or anything!!! Nothing about the blood sugar

> > issues or anything. It is amazing. Gosh, where would he be if I

> > wasn't seeing her? Too scary for me to even think about since we

> are

> > dealing with such complex issues right now! Oh, she is also

> having

> > me add Benefiber to his diet to help with constipation, too. He

> > isn't getting any fiber from his formula, so she wants to try him

> on

> > this. She said no to trying Periactin right now since is

> > still having trouble managing his tube feedings (Referring to the

> > gagging and spitting up). She is hopeful the Zelnorm will help.

> > Does anyone give their kids Zelnorm? I was talking to

> Earley

> > this morning and she was saying that she thinks Max Z. is on

it??

> I

> > was thinking someone was, but wasn't sure. Anyone with advice on

> > this and how it effects the kids and if it really works, would be

> > welcome info!

> >

> > Well guys, sorry this post got to be so long. I hope you all

> don't

> > mind me sharing all of this information with you. I am very

> worried

> > about the insulin resistance. I wanted to let you all know that

> it

> > is a real potential problem for our kids if they get too big.

> And,

> > it is so hard to know when that is for each child, as they are

all

> > different. Dr. H. says that weight for height should be between

> the

> > 10th and 25th percentile. Well, she gives that window for a

> reason.

> > Each child will be different. One may be at the 25% and be fine,

> but

> > another may be there and be too big. That would be . The

> 25%

> > is too big for him. So, I just wanted to let you all know how

> very

> > different each child will be and to know that insulin resistance

> is a

> > real issue!

> >

> > Jodi R.

> > Mommy to Chunky-butt, as described by Dr. H!!! ;o)

> >

>

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Jodi - I can't even respond I'm blushing. Hugs my friend.

- Love, H

> > >

> > > Hey everyone,

> > > I just wanted to let all of you know that I am soooo behind on

> > > reading the posts, and I plan to get to them at my first

> > > opportunity. In scanning I saw some posts about Ian and

> > > Salem that I need to read, and I am sure there are many I will

> > > respond to. I just wanted to let you all know that we are

still

> > > here, but just ever so busy. We had our Dr. H appointment

> > yesterday

> > > and it was an all day thing. We flew from Ohio to New York in

a

> > > whole day and it proved to be very tiring on , Mom, and

I.

> > > But, you know, is only 3 1/2, and I could not expect

any

> > > better behavior from him. He was absolutely wonderful through

> the

> > > entire trip. And, the poor boy had to get up at 3:30 am and

was

> > in

> > > such great spirits and he was so good the whole time. At the

> very

> > > end of the trip he was so tired and ended up sleeping much of

the

> > way

> > > back, but he needed it as he was getting a little slap happy

and

> > then

> > > grumpy, but nothing you wouldn't expect from a 3 1/2 year

old.

> He

> > > actually did better than what I would have thought. He never

> > ceases

> > > to amaze me in what he can tolerate.

> > >

> > > Okay, so this is becoming too long already, but just to let

you

> > know

> > > what Dr. H said about him.....First, he is still way too

chunky.

> > She

> > > is further reducing his tube feedings to where he will be fed

for

> > > only 12 hours overnight from 8:30 pm-8:30 am. She is putting

him

> > on

> > > Zelnorm to hopefully get things moving in his system better.

He

> > > still gags every morning and even spits up the majority of the

> > > time. Even on J tube feedings he is doing this! She is

hoping

> > the

> > > Zelnorm will keep things moving in his belly a little better

and

> > also

> > > aid in constipation since he has been having trouble with

that.

> > She

> > > is having us resume his GH and says she is wanting that to

slim

> > him

> > > down, but also have a bigger appetite to eat better while he

is

> > off

> > > his tube. He only eats baby food right now and she wants him

to

> > > start eating other things. has such trouble with

chewing

> > > things and we are working with a therapist right now to get

him

> to

> > be

> > > able to manage foods better, but it is a SLOW process. But,

we

> > will

> > > try steamed veggies, and hopefully other things. She

suggested

> > > tuna. I can't see him eating that, as he can't really even

> manage

> > a

> > > piece of macaroni (which she also wants him to eat), but we

shall

> > > keep trying. She looked at 's labs and they are indeed

> > showing

> > > that he is insulin resistant and GH resistant. I am not clear

> > > exactly what this means for , but I think she said that

> > > slimming him down will help both of these as they are tied to

one

> > > another through Leptin levels which is tied to the glucose in

> your

> > > body. So, I am assuming that if we can get the insulin

> resistance

> > > under control, that that will help bring down his high IGF and

> > DHEA

> > > levels. I am so confused on all of this and if any of you

have a

> > > grasp on these things, feel free to offer advice or

> > > direction!!! ;o) I think my biggest thing right now will be

to

> > get

> > > him slimmed down and to stop giving him so much sugar. We

will

> be

> > > seeing her again in April as she says she needs to keep a VERY

> > close

> > > eye on him right now. And, she stressed that as only Dr. H.

> > could,

> > > and when she says these things, you know it is a big deal.

So, I

> > > will do exactly what she has told us to do and pray that he

> starts

> > to

> > > drop all the fat he has on him. Oh my gosh, she pulled up

some

> > fat

> > > spots and it is ridiculous how much he has. Her and I

discussed

> > what

> > > looked like at our first visit with her. As some of

you

> > know,

> > > was severely malnourished at 17 months of age, even

though

> > he

> > > was on a feeding tube. She was saying that this tends to be

the

> > > case. She says they go from very skinny and over a period of

> time

> > > she says it is like someone blows them up full of air. You

know,

> > it

> > > is such a fine and hard line to manage. For so long,

> > needed

> > > so many extra calories just to gain weight, now he needs to

slim

> > down

> > > to keep him on a healthy path. Ugh, it is so frustrating and

> hard

> > to

> > > know what to do, but that is why I have her managing his

case. I

> > > just wouldn't get this from local doctors. They are all

saying

> > how

> > > great looks and, blah, blah, blah. No one has ever

> > mentioned

> > > that he is too big or anything!!! Nothing about the blood

sugar

> > > issues or anything. It is amazing. Gosh, where would he be

if I

> > > wasn't seeing her? Too scary for me to even think about since

we

> > are

> > > dealing with such complex issues right now! Oh, she is also

> > having

> > > me add Benefiber to his diet to help with constipation, too.

He

> > > isn't getting any fiber from his formula, so she wants to try

him

> > on

> > > this. She said no to trying Periactin right now since

is

> > > still having trouble managing his tube feedings (Referring to

the

> > > gagging and spitting up). She is hopeful the Zelnorm will

help.

> > > Does anyone give their kids Zelnorm? I was talking to

> > Earley

> > > this morning and she was saying that she thinks Max Z. is on

> it??

> > I

> > > was thinking someone was, but wasn't sure. Anyone with advice

on

> > > this and how it effects the kids and if it really works, would

be

> > > welcome info!

> > >

> > > Well guys, sorry this post got to be so long. I hope you all

> > don't

> > > mind me sharing all of this information with you. I am very

> > worried

> > > about the insulin resistance. I wanted to let you all know

that

> > it

> > > is a real potential problem for our kids if they get too big.

> > And,

> > > it is so hard to know when that is for each child, as they are

> all

> > > different. Dr. H. says that weight for height should be

between

> > the

> > > 10th and 25th percentile. Well, she gives that window for a

> > reason.

> > > Each child will be different. One may be at the 25% and be

fine,

> > but

> > > another may be there and be too big. That would be .

The

> > 25%

> > > is too big for him. So, I just wanted to let you all know how

> > very

> > > different each child will be and to know that insulin

resistance

> > is a

> > > real issue!

> > >

> > > Jodi R.

> > > Mommy to Chunky-butt, as described by Dr. H!!! ;o)

> > >

> >

>

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