Re: Brand New RSS diagnosis

[Guest guest]

Hi Frances

My name is Debby and I live in Ontario (Toronto). Enjoy your time at the

convention. I have gone twice (last year being the most recent) and it's a

10 hour drive for me......so I don't do it every year. You will have a great

time, but be sure to touch base with some of the veterans. I would highly

recommend Pat (grandma of ). She was running " newbie control " last

year. It can be incredibly over whelming to new parents and she was doing

some " desensitizing " after the workshops. I will tell you that I first

attended the convention when my son, Adam, was 8. I sat in on Dr. H.'s talk

and was ready to be totally informed and explode with new knowledge.

Instead, I left part way through in tears. Because Adam wasn't diagnosed

until after the age of 2 (no one thought there was anything wrong with him

before that) and we didn't start GHT until he was 8.....and Dr. H begins her

talk on what to do (and not do) with infants.........I went into a tail spin

of remorse and guilt. It affected me so badly that I did not attend any of

the " talks " when I went last year. I regret that now (sigh) so I just

provide you with a bit of expert advice. You could not possibly have changed

what you didn't know about when Max was a baby; try to brace yourself before

you go in that you won't let these things bother you or you'll miss the talk

about things that are still to come!

Now how to talk to Max. Well, I think, it depends on what you want to say.

(that sounds so obvious!) I explained to Adam about RSS around the time we

went to the convention. So he was 8. But you know, he is going into grade 8

in Sept. and there is a boy in his class who is actually shorter than him (I

never thought I would see it happen) yet, this boy has not been diagnosed

with anything (he's not of an ethnic background that you would think small

was OK) so I figure his parents have just not pursued medical

explanations.........but this fella is well adjusted and not picked on and

is just " fine " . Whereas my guy is immature and has a lot of issues with

bullying. I sometimes wonder if I have told him " too much " . You know? I'm

not sure what I think about this yet, it's something I can't change now and

he seems to " benefit " (if that's the word) from having a name to explain to

new people why he is small...........but I don't know. Should I have told

him anything? Too much? Or are his problems the result of my coddling him

too much? That's something I haven't come to grips with yet. So my advice to

you, would be to just see what Max is capable of hearing. At 5 and 1/2 I

don't know if he needs to understand much. But I'm interested to see what

others say on this respect.

Now to the food. I have a 16 year old daughter as well as Adam (who is 12

now). I have always bought Adam " special " foods (eg. high calorie or ones

that were best suited for his lunch snacks at school) and I have just always

had this rule here. The " special " food I buy for Adam, Colette is not

allowed to eat. I have a special area of the kitchen for his items; and now

that they are both older if I say to Colette " this is for Adam only " she

usually listens (except for the juice boxes LOL). But at the same time I

would guide Colette to some areas of the grocery store that I thought were

appropriate for " not a lot of weight gain " and say " you can pick what you

like " . It would cost more, on occasion, but it was worth the harmony at

home. But that didn't last for long. My kids have inherited very different

likes and preferences (besides the aforementioned juice boxes) so when I

" buy for Colette " or " buy for Adam " ; they tend to naturally be different

things and Colette tends to gravitate to the healthier items.

Again, enjoy the convention. My kids think the pool is worth the drive in

itself. My mother has come with us both times, and she is just thrilled to

sit and watch the planes that are so close you think you could touch them!

Debby

Brand New RSS diagnosis

> Hi all,

> After almost 5 years of searchinng for an answer for why my 5.5 y.o.

> (Max) isn't growing like he should I found the RSS description on the

> MAGIC site and knew we'd finally found the right answer. Our endo

> confirmed it on Friday.

>

> I have hurriedly (sp?) rearranged my work schedule to be able to make

> it to convention although I won't be there until Thursday evening.

> Just me, no kids/family this time - we will plan for next year. I

> have spoken to 2 of the moms here in the Atlanta area but am still

> full of more questions than I can hope to get answered online.

>

> Please, if you're at convention and see me wandering around (5'-8 " ,

> late 40's, heavier than I'd like, very short straight salt & pepper

> hair - I'm afraid more salt than pepper now) and have time for me to

> pick your brain, please come up and introduce yourself.

>

> My mind has been racing since I figured this out late Thursday

> (prepping for Fri's mtg with the endo where we would decide y/n on

> GH.) We've been doing 'all the right things' (periactin, prevacid,

> etc.) and I'm now in 'have I covered all the bases' mode.

>

> My primary concerns right now are:

> 1. How to talk to Max (my 5 y.o) about it - at what level.

> 2. As importantly, how to talk to his sister about it. She's very

> competitive and want's everything Max has. As we increase his

> caloric intake I'm concerned about her developing poor eating habit

> since she's got a big sweet tooth. She's 6. Any input is welcome.

>

> Thanks I look forward to meeting you all.

>

> Frances Scovil

> Atlanta, GA

>

>

>

>

>

>

>

>

[Guest guest]

Hi, Frances. We already have two things in common: I used to live

in Atlanta AND I, too, have a son named Max. But my Max is 17 now,

so we've lived with this RSS thing for a LONG time!

That being said, we were always very honest with Max and told him

what he needed to know at the time. At about your Max's age, we

just told him he had a problem with growing and with gaining weight

to help him grow. He had to eat a certain amount of food or he

would have to be supplemented with extra time on his feeding pump.

I know your Max does not have a feeding tube, but mine needed it for

caloric intake as well as for controlling out-of-control

hypoglycemia. His was so bad that he could not go all night without

food, even if we gave him cornstarch at night before bed. But

that's a whole other story.

Usually, as long as we gave Max some idea of what was going on, he

was satisfied. We adults worry so much about how to tell our kids

certain things that are difficult for ourselves to handle when all

they really want is a very simple explanation. For my Max, just

knowing he had a growing problem was enough at the time. If he

asked questions, we answered them honestly, but, again, not in too

much detail - we just used his reactions to tell us when to stop.

As for your older daughter, I have one of those, too. Jenna is 19,

almost 20, but when Max was a baby (he was diagnosed at 8 months),

we were honest with her, too. We told her just enough for her to

know and be comfortable, no more, no less. And we let her ask

questions and answered them on her level.

The food problem was a big one here. It still is. At first, if we

told Jenna that certain foods were for Max, she left them alone.

But she got jealous with the high calorie foods he was able to eat

and she was not. We tried so many different things and they just

did not work. No matter what, she felt deprived and angry. But she

was also very active with dancing lessons several times a week, so

she did not gain weight. Then puberty hit and the weight came on.

Then she stopped dancing. It became a real problem. I don't have

any magic answers for you there. I wish she had had the control

that Colette has with Debbie. It just was not meant to be over

here.

Now that both of them are older, Max keeps his " stash " in his room.

I don't like my kids to have food in their rooms, but it is the only

way Max can have his higher calorie foods and not have Jenna consume

them in a matter of hours. The only rule is that Max cannot eat

them in his room. And Jenna works from 2 to 10pm, so she is not

here when he is eating, for the most part.

I hope you have a great time at the convention. You will feel like

you are with family and friends you have known for years. It's a

great feeling. I usually go and work with Dr. Harbison and even

have led a few discussions myself, but this year I am not able to go

due to commitments relating to my job as a special ed teacher. I'm

going to miss it - and so will Max. He loves it because he feels

like he is not different.

By the way, Max has been on gh for 14 years now. He does not have a

feeding tube anymore. The best, BEST part is that he is 5'4 " and

predicted to be 5'8 " !!!! That's a really great thing for us,

considering Dr. H. told us he would be 4'8 " without gh and maybe

5'2 " with (he was gh resistant, but seems to be over that one now).

Jodi Z

[Guest guest]

Welcome! I was a first timer last year - don't worry, people will

say hi and want to talk! You may not get many replies as people are

already in Chicago or en route. I arrive Thurs pm...my name is

and I have a 29 mo old daughter Emerence - she looks exactly like

Dora the Explora so say hi if you see me running after a little Dora

look alike!

, mom to , 5 and Emerence 2

> Hi all,

> After almost 5 years of searchinng for an answer for why my 5.5

y.o.

> (Max) isn't growing like he should I found the RSS description on

the

> MAGIC site and knew we'd finally found the right answer. Our endo

> confirmed it on Friday.

>

> I have hurriedly (sp?) rearranged my work schedule to be able to

make

> it to convention although I won't be there until Thursday evening.

> Just me, no kids/family this time - we will plan for next year. I

> have spoken to 2 of the moms here in the Atlanta area but am still

> full of more questions than I can hope to get answered online.

>

> Please, if you're at convention and see me wandering around (5'-8 " ,

> late 40's, heavier than I'd like, very short straight salt & pepper

> hair - I'm afraid more salt than pepper now) and have time for me

to

> pick your brain, please come up and introduce yourself.

>

> My mind has been racing since I figured this out late Thursday

> (prepping for Fri's mtg with the endo where we would decide y/n on

> GH.) We've been doing 'all the right things' (periactin, prevacid,

> etc.) and I'm now in 'have I covered all the bases' mode.

>

> My primary concerns right now are:

> 1. How to talk to Max (my 5 y.o) about it - at what level.

> 2. As importantly, how to talk to his sister about it. She's very

> competitive and want's everything Max has. As we increase his

> caloric intake I'm concerned about her developing poor eating habit

> since she's got a big sweet tooth. She's 6. Any input is welcome.

>

> Thanks I look forward to meeting you all.

>

> Frances Scovil

> Atlanta, GA

[Guest guest]

Frances - welcome to the group. I will also be going to the convention - I have

a 23 month old girl. Will see you there. Jane, mom to (SGA, ?RSS - 23

months 19#, 29 " - periactin, prevacid) and 2 boys (Gavin and Aidan)