Re: dealing with family

[Guest guest]

Hi Cheryl,

We used to get similar comments but after a while and seeing not grow,

they have kinda quieted down. My mother in law was the worst offender until we

let her feed . After 20 minutes of trying to get him to eat a piece of

hot-dog she gave up and said " I don't understand why he won't eat ! " Then it

clicked.

also went through a period of falling a lot. For 2 or 3 months he had a

semi permanent bruise on his forehead. It was quite a nasty bump and he kept

hitting it with each new fall. I believe it had a lot to do with his low muscle

tone. Now he is 3 1/2+ and hardly ever falls.

He still sometimes gets tired and needs( or wants) to be carried, especially if

it is cold and/or windy. It happens maybe once or twice a week. Again I think

this might be related to low muscle tone because he seems to lack stamina. His

teachers and therapists have also commented on this. We are working on him and

he is showing progress.

Our technique is to get down to 's eye level and look him right in the eye

and tell him firmly but gently " I can't carry you now because I .... " . Then we

give him a big hug and say thank -you for walking by yourself. He usually

understands and then walks on his own and is quite good about it. Sometimes we

do carry him when we know he is really tired and/or we are in a hurry ( which we

are all too often).

We also carry along 's bag which has his favorite cookie or fruit juice. He

often sips on the juice while we are out. He usually just takes a mouthful and

it takes him quite a while but he does eventually finish the box of juice. I

think this helps a little with his energy. I am not sure but if 's blood

sugar level drops he would also be quite irritable at the same time. I am just

guessing but it maybe something to look out for.

This is how my wife I handle our son wanting to be carried. Others may have a

better way of doing it.

Anyway, I hope this helps.

Ken M

kevinandcheryl.vanderheyden@... on 12/13/2000 11:54:20 AM

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Subject: dealing with family

I am feeling all stressed out with the fast approach of Christmas,

mostly because we will be travelling to spend the holidays with

relatives. No matter what we say about having a medical

condition that is responsible for his lack of eating and lack of

growth, all we hear from well meaning family members is " he won't

starve himself " , " just wait and he'll have a growth spurt " , " his dad

was just as small at that age " etc. I don't find this

comforting. I'd rather not talk about it at all over the holidays

but

everyone asks. Everyone we meet comments on 's very small size

- how is this affecting 's self esteem? I don't know how to

respond to people anymore.

I also want to know if anyone else runs into difficulty when taking

their children out. frequently dramatically falls to the

ground and says that he is " slippery " and " wiggly " . He is all limp

and will not stand or walk. I usually get angry with him and tell

him

to stand up and behave, then I end up trying to carry him in my arms

along with my 1 year old. I am worried that this act may be a result

of low blood sugar. What can I do if he won't eat to keep his energy

up?

Cheryl

[Guest guest]

Hi Cheryl

I saved your email for awhile. Actually, I took a computer break to watch L & O

and gave

yours some thought.

I think your experience is one that we have all universally lived with. Our kids

are so

different in so many ways but this is one area we all share in!

You know, I started to realize there is no easy answer. I find it depends on who

is asking,

what type of response fits. For the " know it alls " it doesn't matter what you

say. For

instance, for some you could say " oh we and the doctors are working very

closely. He's

pleased with (whatever) and we have much faith in this doctor " . But the know it

all will

just say " oh doctors know nothing---little Fred was just like that too and now

he's 8 feet

tall!! " .

Or how about " thank you for your concern. It's nice to have such a

caring...(name of

relative) but (husband) and I have decided this Christmas we have so many

wonderful things

to be thankful for..that we'd like to concentrate on those good things. ny

is eating as

he should and we'd like to just leave that for now and enjoy your company "

Of course the " know it all " will then say " oh but you can't ignore these

things...I knew a

lady who ignored her son's eating and he's 35 years old now and 3 foot

nothing!!' "

In other words--figure out the know it alls in advance, smile and change the

subject. You

will never reach them.

Try and have a nice Christmas. One thing I did this past week was give a small

update

(changed the wording each time) on the family Christmas cards (especially the

ones I don't

see often). So if we do run into one another over the holidays...they don't have

to belabor

past problems (lack of growth, not eating etc) but I shared my excitement over

starting GH.

So that may spur them to steer their conversation in that direction.

You know what works best for some??? Honestly it does work--I just starting

reciting story

after story of what I have learned on this site (did you know some kids have

feeding

tubes--usually requires explanation) and one poor lady is struggling with just

finding out

the diagnosis and......I just ramble on about all the exciting things I've

learned and what

I write about...and eventually the eyes glaze over and someone ELSE changes the

subject...and generally issues around Adam's growth don't come up again (in

other words---I

talk about it SO much they want to shut me up!!) And any advice they have I say

" oh I've

tried that and...... " another long story.

I know I sound cruel, but it depends on my mood and who is asking. We had a

discussion here

a few months back about this subject. Many people felt honesty, humor, or

indifference all

worked for them. Really for me--it depends on my mood--I may want to talk about

it or I may

want to leave it alone.

And if Adam is ever around I will always ALWAYS turn what was just said into a

positive.

Like grandma says " oh he never eats " and this is done in front of him. I will

pick some area

we've been working on (like for us it's breakfast right now) and I'll counter

with " oh but

grandma we've been so proud of him lately. He's been doing such a fantastic job

of eating

all his breakfast! He's been terrific " (and I may even give her an eye motion to

tell her to

" cool " it!!)

Anyway hope something in my ramblings is of some help.

Debby

kevinandcheryl.vanderheyden@... wrote:

> I am feeling all stressed out with the fast approach of Christmas,

> mostly because we will be travelling to spend the holidays with

> relatives. No matter what we say about having a medical

> condition that is responsible for his lack of eating and lack of

> growth, all we hear from well meaning family members is " he won't

> starve himself " , " just wait and he'll have a growth spurt " , " his dad

> was just as small at that age " etc. I don't find this

> comforting. I'd rather not talk about it at all over the holidays

> but

> everyone asks. Everyone we meet comments on 's very small size

> - how is this affecting 's self esteem? I don't know how to

> respond to people anymore.

>

> I also want to know if anyone else runs into difficulty when taking

> their children out. frequently dramatically falls to the

> ground and says that he is " slippery " and " wiggly " . He is all limp

> and will not stand or walk. I usually get angry with him and tell

> him

> to stand up and behave, then I end up trying to carry him in my arms

> along with my 1 year old. I am worried that this act may be a result

> of low blood sugar. What can I do if he won't eat to keep his energy

> up?

>

> Cheryl

>

[Guest guest]

Dear Cheryl,

Dr Harbison has us giving Grainne a Cornstarch and milk mix(An ounce of

milk,a heaping teaspoon of cornstarch,and I add a half teaspoon of Carnation

Instant breakfast to help the taste and add a bit of calories) . We give it

to her every 4 hours through the day(after each " meal " and during the night )

We give it in a 10cc syringe so that Grainne considers it her medicine; it

also shoots it to the back of the throat so that it's less tacky on the

tongue. We check Grainne's sugar with a glucometer and the mixture keeps her

blood sugar in the 80s for 4 hours even if she only eats a bit . It is the

only way that I have been able to keep her blood sugar from dropping and I

am so grateful that it works .Grainne started at special nursery school

last week and the nurse at the school gives her " Cornstarch " before getting

on the bus to come home . This way I know that her blood sugar is ok for the

ride home regardless of whether she ate her lunch at school or not.

I'm not sure if your sons symptoms are signs of hypoglycemia . YOu may

want to start checking his bl sugar when he is symptomatic and then you'll

know for sure

Regards

Maggie Mother of Grainne 3yo,Periactin,GHT Cornstarch

[Guest guest]

Dear Cheryl,

Just wanted to add one thing. The lower Grainne's sugar is the more

oppositional she is and the less likely she is to eat or drink anything . I

always keep a jucie box handy and sometimes have to squirt it into her mouth

.. THere are also tubes of glucose gels,glucose tablets...I always see an

almost immediate improvement in her behavior when the sugar kicks in . (the

usual ways I can tell her sugar is low : tremors, staring, marked change in

behavior -usually very oppositional) Alos remember to follow up the sugar

with a protien since the glucose is fast acting and will bring the blood

sugar up to an acceptable level but the protien (or a cornstarch cocktail)

will keep the sugar up!

It's a lot of work !! Just keeping Grainne's sugar underr control is a full

time job!!

Regards

Maggie

[Guest guest]

Maggie,

There are two other things you can keep on hand to help Grainne. We use

them with Max...Those little tubes of icing that are in the baking aisle -

they work the same as glucose gels and tablets and are less expensive; also,

GummiSavers were recommended by Max's gastro-enterologist. He keeps them on

hand all the time in his own office because he is also hypoglycemic. I try

to keep the individually wrapped ones on hand. I used to carry juice boxes

until one opened up in my pocketbook. No more of those for me!

Jodi

Re: dealing with family

> Dear Cheryl,

>

> Just wanted to add one thing. The lower Grainne's sugar is the more

> oppositional she is and the less likely she is to eat or drink anything .

I

> always keep a jucie box handy and sometimes have to squirt it into her

mouth

> . THere are also tubes of glucose gels,glucose tablets...I always see an

> almost immediate improvement in her behavior when the sugar kicks in .

(the

> usual ways I can tell her sugar is low : tremors, staring, marked change

in

> behavior -usually very oppositional) Alos remember to follow up the sugar

> with a protien since the glucose is fast acting and will bring the blood

> sugar up to an acceptable level but the protien (or a cornstarch cocktail)

> will keep the sugar up!

> It's a lot of work !! Just keeping Grainne's sugar underr control is a

full

> time job!!

> Regards

> Maggie

>

>

>

>

>

[Guest guest]

Hi Maggie

As one mom with an 8 year old defiant, " behavioural " (RSS) child, I felt a panic

when I read

what you had learned about hypo-g in infancy. I found this summer that Adam is

hypo-g. Was

he as a baby?? I don't know and never will, but now that I look at his behaviour

and your

observation about neurological problems--well it saddens me. If only.......

Anyway, just to add to your discussion, when Adam is having what I call a

" meltdown " his

behaviours are quite specific. He becomes very agitated and, since he is older,

verbally

expresses himself. He will just continually yell " I am angry " and his body will

be in

constant motion. It's a scary thing to see. When I get his attention

(difficult!!) to ask

why are you angry--he says I don't know. So now I know when he goes into this

fit--I grab

what ever food I can find. The last 2 times I grabbed peanut butter and crackers

(those

premade packages--the last time was in the grocery store and I just ripped one

open right

there and said eat!!).

Now I am lucky because of his age I can explain it. Once he is calm (and it's

almost

immediately after he has 2 bites!!) I have him stop and recall that feeling. I

want him to

recognize when he is getting to that point and to eat!! I try to tell him that

it has

" nothing " to do with him growing or not (as our food battles are usually about!)

but this

time it is his body saying it's in big trouble and is asking you to help it.

Being the

helpful kid he is, I find he will eat now when this business starts.

I just wish I had known about that years ago. The poor kid.

Debby

magbhal@... wrote:

> Dear Cheryl,

>

> Just wanted to add one thing. The lower Grainne's sugar is the more

> oppositional she is and the less likely she is to eat or drink anything . I

> always keep a jucie box handy and sometimes have to squirt it into her mouth

> . THere are also tubes of glucose gels,glucose tablets...I always see an

> almost immediate improvement in her behavior when the sugar kicks in . (the

> usual ways I can tell her sugar is low : tremors, staring, marked change in

> behavior -usually very oppositional) Alos remember to follow up the sugar

> with a protien since the glucose is fast acting and will bring the blood

> sugar up to an acceptable level but the protien (or a cornstarch cocktail)

> will keep the sugar up!

> It's a lot of work !! Just keeping Grainne's sugar underr control is a full

> time job!!

> Regards

> Maggie

>

[Guest guest]

Debra,

Thanks a lot for your ideas. I really like the one where you just ramble on so

much that they

want to change the subject. I can definitely turn a short story into a long

one! I have

another good one from a " know it all " that I know : Her sister's kid had the

same problem with

his growth and it turned out that his tonsils were so big that it reduced his

food intake! If

only it was that simple!

Thanks,again, Cheryl

Debra Baillargeon wrote:

> Hi Cheryl

> I saved your email for awhile. Actually, I took a computer break to watch L &

O and gave

> yours some thought.

> I think your experience is one that we have all universally lived with. Our

kids are so

> different in so many ways but this is one area we all share in!

> You know, I started to realize there is no easy answer. I find it depends on

who is asking,

> what type of response fits. For the " know it alls " it doesn't matter what you

say. For

> instance, for some you could say " oh we and the doctors are working very

closely. He's

> pleased with (whatever) and we have much faith in this doctor " . But the know

it all will

> just say " oh doctors know nothing---little Fred was just like that too and now

he's 8 feet

> tall!! " .

> Or how about " thank you for your concern. It's nice to have such a

caring...(name of

> relative) but (husband) and I have decided this Christmas we have so many

wonderful things

> to be thankful for..that we'd like to concentrate on those good things. ny

is eating as

> he should and we'd like to just leave that for now and enjoy your company "

> Of course the " know it all " will then say " oh but you can't ignore these

things...I knew a

> lady who ignored her son's eating and he's 35 years old now and 3 foot

nothing!!' "

>

> In other words--figure out the know it alls in advance, smile and change the

subject. You

> will never reach them.

>

> Try and have a nice Christmas. One thing I did this past week was give a small

update

> (changed the wording each time) on the family Christmas cards (especially the

ones I don't

> see often). So if we do run into one another over the holidays...they don't

have to belabor

> past problems (lack of growth, not eating etc) but I shared my excitement over

starting GH.

> So that may spur them to steer their conversation in that direction.

>

> You know what works best for some??? Honestly it does work--I just starting

reciting story

> after story of what I have learned on this site (did you know some kids have

feeding

> tubes--usually requires explanation) and one poor lady is struggling with just

finding out

> the diagnosis and......I just ramble on about all the exciting things I've

learned and what

> I write about...and eventually the eyes glaze over and someone ELSE changes

the

> subject...and generally issues around Adam's growth don't come up again (in

other words---I

> talk about it SO much they want to shut me up!!) And any advice they have I

say " oh I've

> tried that and...... " another long story.

>

> I know I sound cruel, but it depends on my mood and who is asking. We had a

discussion here

> a few months back about this subject. Many people felt honesty, humor, or

indifference all

> worked for them. Really for me--it depends on my mood--I may want to talk

about it or I may

> want to leave it alone.

>

> And if Adam is ever around I will always ALWAYS turn what was just said into a

positive.

> Like grandma says " oh he never eats " and this is done in front of him. I will

pick some area

> we've been working on (like for us it's breakfast right now) and I'll counter

with " oh but

> grandma we've been so proud of him lately. He's been doing such a fantastic

job of eating

> all his breakfast! He's been terrific " (and I may even give her an eye motion

to tell her to

> " cool " it!!)

>

> Anyway hope something in my ramblings is of some help.

>

> Debby

>

> kevinandcheryl.vanderheyden@... wrote:

>

> > I am feeling all stressed out with the fast approach of Christmas,

> > mostly because we will be travelling to spend the holidays with

> > relatives. No matter what we say about having a medical

> > condition that is responsible for his lack of eating and lack of

> > growth, all we hear from well meaning family members is " he won't

> > starve himself " , " just wait and he'll have a growth spurt " , " his dad

> > was just as small at that age " etc. I don't find this

> > comforting. I'd rather not talk about it at all over the holidays

> > but

> > everyone asks. Everyone we meet comments on 's very small size

> > - how is this affecting 's self esteem? I don't know how to

> > respond to people anymore.

> >

> > I also want to know if anyone else runs into difficulty when taking

> > their children out. frequently dramatically falls to the

> > ground and says that he is " slippery " and " wiggly " . He is all limp

> > and will not stand or walk. I usually get angry with him and tell

> > him

> > to stand up and behave, then I end up trying to carry him in my arms

> > along with my 1 year old. I am worried that this act may be a result

> > of low blood sugar. What can I do if he won't eat to keep his energy

> > up?

> >

> > Cheryl

> >

>

[Guest guest]

Joanne,

I know they are just trying to make us feel better, but it doesn't.

Then when I say " no, he's a special case... he was IUGR... its

different than just being born early " they say " YOU'LL see " , like I'm

some kind of idiot who doesn't know....

Anyway, I try not to let people know that it REALLY bothers me...

smile and walk away.

Sue R.