Re: Thoughts and Questions

August 25, 2004

,

I just read your post. Don't worry about how long it was. It was

perfectly appropriate for what you needed to say, and sometimes you

need to be able to just write down your thoughts and feelings.

I know what you are saying about trying to think about positive

things to say in front of Ian. I worry that with all the people that

comment on and how small he is, that he is going to get a

negative frame of mind about being small. I hate it when people

say, " How old is he? " And I reply, " He is 27 months. " Their eyes

just about pop out of their heads while saying, " But he is so small,

was he a preemie!? " Ugh, it drives me nuts. I am like " Yeah, he was

early, but that has nothing to do with his size. " I wish I was as

quick at thinking positive comments up as you are, but most of the

time people catch me off guard, because is to me, and I

don't think everyday about him being small.

As far as higher calorie foods, there are so many people on here that

are doing those things right now. I am sure they can give you some

ideas. I also know waht you mean about eating less out of the home

environment. does the same thing. I can get him to eat some

baby foods here at home, but like if we are at my parents house, it

is very rare that he eats anything.

Also, is it possible that Ian is sweating due to hypoglycemia? Some

of these kids have trouble with hypoglycemia, and if they don't eat

frequently enough, their sugar statrs to drop. Sweating is a sign of

low blood sugar. gets hypoglycemic if he is off his tube

feeds for a certain period of time. We never have him off more than

five hours, per Dr. H's orders. Maybe you could have them do a test

for low blood sugar. had a sweat test done also, of course it

was negative. Just like all the other tests he has been through!

Well, I just wanted to respond to your post. I hope you aren't too

overwhelmed at this point. You will get lots of responses about the

food I bet. You can email me if you would like at rollison@ core.com

without the space. )

Jodi R.

> It's been awhile since I've posted. This Summer is just flying

by.

> Based on the posts - the convention sounded awesome and very

> uplifting.

>

> My Ian is doing pretty good. Up until just recently I have taken

our

> news of his RSS very well. He seems to have a " milder " case at

this

> point and I worried of course as a parent would but also felt that

he

> was doing rather well considering his diagnosis. I'm still a firm

> believer of taking things as they come as opposed to worrying about

> the future. But lately, I seem to be worrying more. We saw his

Endo

> on Monday and he has gained only 10 oz in 4 mos. I knew this all

> along and fortunately he hasn't lost any weight - but, I'm

> concerned. We have decided to make an appointment with the

Nutrition

> Clinic - of which I would have insisted had it not been suggested

to

> us, and I'm looking forward to getting suggestions about the types

of

> foods that will help " bulk " him up and hopefully add weight as

> opposed to staying the same. Now that he will be 16 months next

> week, he's refusing formula, hates whole or 2% milk and only likes

> skim milk or water. It's amazing how kids change so quickly - he

had

> been eating so well between 9 and 13 months - and anything I gave

him

> he enjoyed. Now, as a typical 15 month old will do - they get

picky

> about their food. I suppose I just didn't expect it to happen so

> early. I was told by our Endo though that this was very normal for

> RSS children " as you know " he said. He really is a great Doc.

Sorry

> I'm rambling. We are going on vacation for 17 days and I'm just

> worried about his eating - he get's so distracted when we are out

and

> usually eats less if he's not in his home environement. I've

decided

> we will eat in the hotel room and not in restaurants the entire

> time. Fortunately, we won't be in a hotel the entire time.

> We are having a sweat test done tomorrow. He's been sweating alot

> even though his thyroid tests are all normal. We are checking for

> malabsorption - but the Endo sais we can most assuredly rule it

out -

> it's just a precautionary test for now. I guess my true worries

are

> when we decide to try the growth hormones at age 2 (which is quite

> awhile yet) and whether or not he will need a feeding tube.

> The other big thought I have is that I have been labeling my son

> lately and I hate it. I hate thinking about him as an RSS child.

I

> wish I could look at him and say " my how big you are getting " as

> opposed to thinking " you are so little " . And I've told my Endo

that

> I'm being much more careful about how I respond to people when they

> comment about my son. I have come to the realization that I could

be

> damaging his ego and his self-confidence if I'm constantly talking

> about his smallness and how " little " he is. The other day a woman

> commented on how " skinny his legs were " . I told her that they are

> great for running. I was so proud of myself to have been able to

> come up with that answer. I just pray that I will be able to

> continue that thought process and I've been making an extra, extra

> effort every day to say something less " labeling " to and in front

of

> my son. My mom sais I shouldn't be so hard on myself - but, I'm

the

> most important person in his life (next to my husband - but, he's

> always at work so it's mostly me) and his brother has to see as

well

> that he has just as many great traits as he does. His big brother

is

> just that - huge - he's in the 95th and 100th percentile all around

> and I pray I handle things right so he will " protect " Ian and be a

> good big brother. I pray for God's strength.

> Thank you to those who bothered to read this terribly long and

boring

> note.

>

August 25, 2004

I didn't think your post was boring at all! In fact I think you wrote a

wonderful piece of what we have all experienced/thought many, many times. In

fact you gave me something to think about. My son, Adam, is almost 12 so

he's been hearing me say for YEARS " he has a growth disorder " (is my

standard reply) but I never realized the effect of those words before! I am

going to watch much more closely what I say from now on. Thanks for that eye

opener!

Oh one other thing I have done for years (took awhile but now it's second

nature) is base everything on AGE. So many people will say 'when you are

bigger' or 'that's for someone bigger'..........not meant in a negative

way.........just we tend to speak that way. I have always said " when you are

6 " or " my that was a big jump for a 7 year old " or whatever. I just have to

be careful what ages I pick to qualify something!! or I am stuck keeping my

word when Adam hits that age as he never forgets anything!

Debby

Thoughts and Questions

> It's been awhile since I've posted. This Summer is just flying by.

> Based on the posts - the convention sounded awesome and very

> uplifting.

>

> My Ian is doing pretty good. Up until just recently I have taken our

> news of his RSS very well. He seems to have a " milder " case at this

> point and I worried of course as a parent would but also felt that he

> was doing rather well considering his diagnosis. I'm still a firm

> believer of taking things as they come as opposed to worrying about

> the future. But lately, I seem to be worrying more. We saw his Endo

> on Monday and he has gained only 10 oz in 4 mos. I knew this all

> along and fortunately he hasn't lost any weight - but, I'm

> concerned. We have decided to make an appointment with the Nutrition

> Clinic - of which I would have insisted had it not been suggested to

> us, and I'm looking forward to getting suggestions about the types of

> foods that will help " bulk " him up and hopefully add weight as

> opposed to staying the same. Now that he will be 16 months next

> week, he's refusing formula, hates whole or 2% milk and only likes

> skim milk or water. It's amazing how kids change so quickly - he had

> been eating so well between 9 and 13 months - and anything I gave him

> he enjoyed. Now, as a typical 15 month old will do - they get picky

> about their food. I suppose I just didn't expect it to happen so

> early. I was told by our Endo though that this was very normal for

> RSS children " as you know " he said. He really is a great Doc. Sorry

> I'm rambling. We are going on vacation for 17 days and I'm just

> worried about his eating - he get's so distracted when we are out and

> usually eats less if he's not in his home environement. I've decided

> we will eat in the hotel room and not in restaurants the entire

> time. Fortunately, we won't be in a hotel the entire time.

> We are having a sweat test done tomorrow. He's been sweating alot

> even though his thyroid tests are all normal. We are checking for

> malabsorption - but the Endo sais we can most assuredly rule it out -

> it's just a precautionary test for now. I guess my true worries are

> when we decide to try the growth hormones at age 2 (which is quite

> awhile yet) and whether or not he will need a feeding tube.

> The other big thought I have is that I have been labeling my son

> lately and I hate it. I hate thinking about him as an RSS child. I

> wish I could look at him and say " my how big you are getting " as

> opposed to thinking " you are so little " . And I've told my Endo that

> I'm being much more careful about how I respond to people when they

> comment about my son. I have come to the realization that I could be

> damaging his ego and his self-confidence if I'm constantly talking

> about his smallness and how " little " he is. The other day a woman

> commented on how " skinny his legs were " . I told her that they are

> great for running. I was so proud of myself to have been able to

> come up with that answer. I just pray that I will be able to

> continue that thought process and I've been making an extra, extra

> effort every day to say something less " labeling " to and in front of

> my son. My mom sais I shouldn't be so hard on myself - but, I'm the

> most important person in his life (next to my husband - but, he's

> always at work so it's mostly me) and his brother has to see as well

> that he has just as many great traits as he does. His big brother is

> just that - huge - he's in the 95th and 100th percentile all around

> and I pray I handle things right so he will " protect " Ian and be a

> good big brother. I pray for God's strength.

> Thank you to those who bothered to read this terribly long and boring

> note.

>

August 25, 2004

- you sound like a great mom with a good head on your

shoulders!!!! One FYI -- a large portion of our RSS kids' weight

gain slows down around 15-18 months old (my own daughter gained ZERO

ounces from 15 months to 24 months). As we painfully learned, it

was caloric. Although she was eating similar amounts, she was now

walking and running, and hence burning more.

You will go through these periods at various points in his life --

when he starts preschool and is more active (hence burning more

calories); when he starts sports; etc. Each time, you have to

reevaluate his diet and figure out new ways to get that additional

10-25% calories into him.

I am a bit concerned about the sweating you refer to. Is this

nighttime, morning, all day??? Experts have found that so many of

our kids simply " sweat " more -- and it is unknown if this is just

part of their disorder. However, excess sweating, especially around

the head, is also a sign of hypoglycemia, and spilling ketones if

the first sign.

If you are able, I would recommend buying some over the counter

ketostix and when he does sweat excessively, take a cotton ball and

squeeze some urine from his diaper onto it and onto the ketostix.

See if he is spilling ketones.

Make sure that you read the MAGIC documents H-26 and H-28 for more

information (Dr. Harbison wrote the documents).

Give yourself a pat on the back!!! Good job, Mom! Salem

> It's been awhile since I've posted. This Summer is just flying

by.

> Based on the posts - the convention sounded awesome and very

> uplifting.

>

> My Ian is doing pretty good. Up until just recently I have taken

our

> news of his RSS very well. He seems to have a " milder " case at

this

> point and I worried of course as a parent would but also felt that

he

> was doing rather well considering his diagnosis. I'm still a firm

> believer of taking things as they come as opposed to worrying

about

> the future. But lately, I seem to be worrying more. We saw his

Endo

> on Monday and he has gained only 10 oz in 4 mos. I knew this all

> along and fortunately he hasn't lost any weight - but, I'm

> concerned. We have decided to make an appointment with the

Nutrition

> Clinic - of which I would have insisted had it not been suggested

to

> us, and I'm looking forward to getting suggestions about the types

of

> foods that will help " bulk " him up and hopefully add weight as

> opposed to staying the same. Now that he will be 16 months next

> week, he's refusing formula, hates whole or 2% milk and only likes

> skim milk or water. It's amazing how kids change so quickly - he

had

> been eating so well between 9 and 13 months - and anything I gave

him

> he enjoyed. Now, as a typical 15 month old will do - they get

picky

> about their food. I suppose I just didn't expect it to happen so

> early. I was told by our Endo though that this was very normal

for

> RSS children " as you know " he said. He really is a great Doc.

Sorry

> I'm rambling. We are going on vacation for 17 days and I'm just

> worried about his eating - he get's so distracted when we are out

and

> usually eats less if he's not in his home environement. I've

decided

> we will eat in the hotel room and not in restaurants the entire

> time. Fortunately, we won't be in a hotel the entire time.

> We are having a sweat test done tomorrow. He's been sweating alot

> even though his thyroid tests are all normal. We are checking for

> malabsorption - but the Endo sais we can most assuredly rule it

out -

> it's just a precautionary test for now. I guess my true worries

are

> when we decide to try the growth hormones at age 2 (which is quite

> awhile yet) and whether or not he will need a feeding tube.

> The other big thought I have is that I have been labeling my son

> lately and I hate it. I hate thinking about him as an RSS child.

I

> wish I could look at him and say " my how big you are getting " as

> opposed to thinking " you are so little " . And I've told my Endo

that

> I'm being much more careful about how I respond to people when

they

> comment about my son. I have come to the realization that I could

be

> damaging his ego and his self-confidence if I'm constantly talking

> about his smallness and how " little " he is. The other day a woman

> commented on how " skinny his legs were " . I told her that they are

> great for running. I was so proud of myself to have been able to

> come up with that answer. I just pray that I will be able to

> continue that thought process and I've been making an extra, extra

> effort every day to say something less " labeling " to and in front

of

> my son. My mom sais I shouldn't be so hard on myself - but, I'm

the

> most important person in his life (next to my husband - but, he's

> always at work so it's mostly me) and his brother has to see as

well

> that he has just as many great traits as he does. His big brother

is

> just that - huge - he's in the 95th and 100th percentile all

around

> and I pray I handle things right so he will " protect " Ian and be a

> good big brother. I pray for God's strength.

> Thank you to those who bothered to read this terribly long and

boring

> note.

>

August 25, 2004

I understand how you feel. I just found out that my daughter

who is 4 1/2 is RSS. We found out about a month before her 4th

birthday. Prior to that her ped diagnosed her as failure to thrive.

When she was a baby and eating every two hours, two ounces at a time

until she was four months old I heard it all from my mother and some

others because I was breastfeeding her. Well looking back it was me

not giving her enough but the RSS. Salem is right on with

kids not gaining especially as they start to move around more. I'm

also with you about the mild RSS. I believe would be

considered a " mild degree " of RSS but I don't know. Her Endo didn't

get into that with me and I have yet to get an appointment with Dr.

H. is sweats too on the head and such and I'm just learning

that it could be from the RSS and hypoglycemia. had a sweat

test which was normal. At the time her ped was checking for cystic

fibrosis because of her size. I also though that would feel

sweaty on the back of her neck and her head because I bundled her or

that she was like her father or some people in my family who sweat

alot. I even sometimes think that her head gets sweaty because she

likes to wear her hair down and play but then again her forehead isn't

sweaty but you can see sweat beads under her eyes.

Your letter was not long and boring. I'm sure your older son will be

a great big/older brother. Its funny is the older sister and

is very protective of her younger sister. I too starting feeling

like I am the one labeling my daughter but I have come to realize that

I am actually just being more educated and knowledgeable about it all.

We just got back from vacation and luckily our hotel room had kitchen

facilities so we were able to keep 's diet familiar to her. My

husband always got so upset when she wouldn't eat a lot but now

knowing that she is RSS and everything else (and I am more informed

than he is) we both get upset when she doesn't eat her what's normal

or good for her. Before people didn't understand and they are

starting to as we learn more but some still don't get it.

Good luck with the sweat test - its an easy test thank goodness!!!

Now my turn to apologize for being long and boring!!!

B

4 1/2 RSS and Kelli 2 Non RSS