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Hi, Pat. I hope received my reply to his email to Max. Max will be

back on Friday night. He is sleeping over at camp for the week. This is

very new for us - and him. (The day camp he attends had a weeklong

sleepover for those in his age group who wanted to try it.)

Anyway, I read about the anger issue. We have had to face the same thing

here. We tried many different things, but eventually had to put Max on

medication. He takes Buspar twice a day and it has helped. We did not want

to add another medication to his list of meds, but we were faced with no

choice. You might want to discuss this with Dr. Harbison the next time you

see her. She helped us through an awful lot in this department. I think

you are correct when you say that is angry from all of the medical

intervention. I'm sure Max is too.

Have you checked for signs of early puberty? Some of this started for

Max when I noticed he was starting at around 9 1/2. He had a slight odor

under his arms. Then I began to notice hairy legs. Eventually I saw a bit

of pubic hair, too. After a year, Dr. H. tested him and he was, in fact, in

puberty. I attribute a lot of his anger and mood swings to that.

I hope I have helped. Max will respond probably on Saturday.

Jodi

RSS

>

>

>Hi ,

> is 9yrs. old and weighs 42 1/2 lbs. He is 47 1/2 " . He is on a high

>cal. high fat diet. We are trying to push shakes and high cal. pudding for

>his " extras " now and still get him to eat as much other high cal. stuff as

>possible.

> We are having a VERY difficult time right now with his anger. He is

>basically angry with being different. He hates being small, hates getting

>picked on, hates all of the team of Dr.'s we have working to help. I'm not

>sure what else we can do. I read all the e-mails and feel that we are in a

>totally different place, because most of the people that write have younger

>children. had some botched hypospadias surgeries when he was younger

>that had to be revised when he was 5 1/2yrs. old. This was a very tramatic

>thing for him plus he missed lots of kindergarten and 1st grade, which put

>him behind in reading. He spent 2nd grade catching up.

> Any ideas out there? Help I have a 9 yr. old who is acting like a

>teenager. Pat

>

>

>---------------------------

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Jodi:

I hope you don't take this anyway but to smile......but I couldn't help but read

your email and chuckle a little to think how horrified your son would be to know

that we all know about his " early puberty problems " ! ha. ha. ha. Wouldn't all

our kids just fall over if they knew we discussed these things along with having

problems " pooping " , gas, throwing up all over, etc. etc. In fact, I would

contemplating in asking if anyone else's son has a small " pee-pee " (I know, it's

not the medical term! ha. ha.). 's looks awful little to me, but his Endo.

doctor said that it is normal size for 's size. Not that I really care, but

someday might! :) Okay, now I think I've probably embarassed my son for

the record! ha. ha. ha.

Take care!

Stacie

Mommy to daughter - (6 yrs.) and son - (2 1/2 yrs.) with RSS,

assemetry, and g-tube. (19.13 lbs. & 31 in.)

z4all wrote:

>

>

> Hi, Pat. I hope received my reply to his email to Max. Max will be

> back on Friday night. He is sleeping over at camp for the week. This is

> very new for us - and him. (The day camp he attends had a weeklong

> sleepover for those in his age group who wanted to try it.)

>

> Anyway, I read about the anger issue. We have had to face the same thing

> here. We tried many different things, but eventually had to put Max on

> medication. He takes Buspar twice a day and it has helped. We did not want

> to add another medication to his list of meds, but we were faced with no

> choice. You might want to discuss this with Dr. Harbison the next time you

> see her. She helped us through an awful lot in this department. I think

> you are correct when you say that is angry from all of the medical

> intervention. I'm sure Max is too.

>

> Have you checked for signs of early puberty? Some of this started for

> Max when I noticed he was starting at around 9 1/2. He had a slight odor

> under his arms. Then I began to notice hairy legs. Eventually I saw a bit

> of pubic hair, too. After a year, Dr. H. tested him and he was, in fact, in

> puberty. I attribute a lot of his anger and mood swings to that.

>

> I hope I have helped. Max will respond probably on Saturday.

>

> Jodi

> RSS

>

> >

> >

> >Hi ,

> > is 9yrs. old and weighs 42 1/2 lbs. He is 47 1/2 " . He is on a high

> >cal. high fat diet. We are trying to push shakes and high cal. pudding for

> >his " extras " now and still get him to eat as much other high cal. stuff as

> >possible.

> > We are having a VERY difficult time right now with his anger. He is

> >basically angry with being different. He hates being small, hates getting

> >picked on, hates all of the team of Dr.'s we have working to help. I'm not

> >sure what else we can do. I read all the e-mails and feel that we are in a

> >totally different place, because most of the people that write have younger

> >children. had some botched hypospadias surgeries when he was younger

> >that had to be revised when he was 5 1/2yrs. old. This was a very tramatic

> >thing for him plus he missed lots of kindergarten and 1st grade, which put

> >him behind in reading. He spent 2nd grade catching up.

> > Any ideas out there? Help I have a 9 yr. old who is acting like a

> >teenager. Pat

> >

> >

> >---------------------------

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Jodi,

What the h@#$ is Pokemon ???

Ken M

:)

----------

>

>To: <RSS-Supportonelist>

>Subject: Re: RSS

>Date: Fri, Aug 13, 1999, 7:36 PM

>

>

>

> Stacie, don't worry. You have brought up something I think about every time

> I send an email about Max. If he read these messages, he would KILL me!

> Thank goodness he doesn't care to look over my shoulder when I write. He

> would rather be playing Pokemon!

>

> Jodi

> RSS

>>>

>>> >

>>> >

>>> >Hi ,

>>> > is 9yrs. old and weighs 42 1/2 lbs. He is 47 1/2 " . He is on a

> high

>>> >cal. high fat diet. We are trying to push shakes and high cal. pudding

> for

>>> >his " extras " now and still get him to eat as much other high cal. stuff

> as

>>> >possible.

>>> > We are having a VERY difficult time right now with his anger. He is

>>> >basically angry with being different. He hates being small, hates

> getting

>>> >picked on, hates all of the team of Dr.'s we have working to help. I'm

> not

>>> >sure what else we can do. I read all the e-mails and feel that we are in

> a

>>> >totally different place, because most of the people that write have

> younger

>>> >children. had some botched hypospadias surgeries when he was

> younger

>>> >that had to be revised when he was 5 1/2yrs. old. This was a very

> tramatic

>>> >thing for him plus he missed lots of kindergarten and 1st grade, which

> put

>>> >him behind in reading. He spent 2nd grade catching up.

>>> > Any ideas out there? Help I have a 9 yr. old who is acting like a

>>> >teenager. Pat

>>> >

>>> >

>>> >---------------------------

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KEN!!!! Get with the program!!!! Pokemon is " the " thing for school age kids!

loves Pokemon.....actually it's sort of silly! Anyway, I just had to

tease

you......it's a cartoon. Believe me, will soon be educating you on the

" latest " cartoon/action toy fad. knows all about Pokemon and the Pikachu

character!

Hope is doing well. is sleeping better. Some nights are a little

bit

of a struggle, but most have been very good. We are still working on him,

though,

about being scared and feeling secure again. At least we are all getting more

sleep!

Talk to you soon.............

Stacie

Ken Merrithew wrote:

>

>

> Jodi,

>

> What the h@#$ is Pokemon ???

>

> Ken M

>

> :)

>

> ----------

> >

> >To: <RSS-Supportonelist>

> >Subject: Re: RSS

> >Date: Fri, Aug 13, 1999, 7:36 PM

> >

>

> >

> >

> > Stacie, don't worry. You have brought up something I think about every time

> > I send an email about Max. If he read these messages, he would KILL me!

> > Thank goodness he doesn't care to look over my shoulder when I write. He

> > would rather be playing Pokemon!

> >

> > Jodi

> > RSS

> >>>

> >>> >

> >>> >

> >>> >Hi ,

> >>> > is 9yrs. old and weighs 42 1/2 lbs. He is 47 1/2 " . He is on a

> > high

> >>> >cal. high fat diet. We are trying to push shakes and high cal. pudding

> > for

> >>> >his " extras " now and still get him to eat as much other high cal. stuff

> > as

> >>> >possible.

> >>> > We are having a VERY difficult time right now with his anger. He is

> >>> >basically angry with being different. He hates being small, hates

> > getting

> >>> >picked on, hates all of the team of Dr.'s we have working to help. I'm

> > not

> >>> >sure what else we can do. I read all the e-mails and feel that we are in

> > a

> >>> >totally different place, because most of the people that write have

> > younger

> >>> >children. had some botched hypospadias surgeries when he was

> > younger

> >>> >that had to be revised when he was 5 1/2yrs. old. This was a very

> > tramatic

> >>> >thing for him plus he missed lots of kindergarten and 1st grade, which

> > put

> >>> >him behind in reading. He spent 2nd grade catching up.

> >>> > Any ideas out there? Help I have a 9 yr. old who is acting like a

> >>> >teenager. Pat

> >>> >

> >>> >

> >>> >---------------------------

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You don't know about Pekemon???!!!! It is based on some TV show that my son

watches every morning at 7. There are 150 different characters, trading

cards, toys and on and on and on. The kids are absolutely hooked on this

stuff. Max plays the Gameboy version wherever he goes and inevitably winds

up meeting some other boy playing the game, too. They have a link cable so

that they can both play the game on their own Gameboys together. I believe

it started in Japan where the translation means Pocket Monster. I don't

understand how these kids who have trouble knowing how to spell and do math

facts can know the names of 150 characters!

Jodi

RSS

>>>>

>>>> >

>>>> >

>>>> >Hi ,

>>>> > is 9yrs. old and weighs 42 1/2 lbs. He is 47 1/2 " . He is on a

>> high

>>>> >cal. high fat diet. We are trying to push shakes and high cal. pudding

>> for

>>>> >his " extras " now and still get him to eat as much other high cal.

stuff

>> as

>>>> >possible.

>>>> > We are having a VERY difficult time right now with his anger. He is

>>>> >basically angry with being different. He hates being small, hates

>> getting

>>>> >picked on, hates all of the team of Dr.'s we have working to help. I'm

>> not

>>>> >sure what else we can do. I read all the e-mails and feel that we are

in

>> a

>>>> >totally different place, because most of the people that write have

>> younger

>>>> >children. had some botched hypospadias surgeries when he was

>> younger

>>>> >that had to be revised when he was 5 1/2yrs. old. This was a very

>> tramatic

>>>> >thing for him plus he missed lots of kindergarten and 1st grade, which

>> put

>>>> >him behind in reading. He spent 2nd grade catching up.

>>>> > Any ideas out there? Help I have a 9 yr. old who is acting like a

>>>> >teenager. Pat

>>>> >

>>>> >

>>>> >--------------------------- ONElist

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>>>> >

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>>>> >

>>>>

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>>>>

>>>> -----------------------------------------------------------------------

-

>>>

>>>

>>>

>>>

>>>---------------------------

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Hi Stacie,

I'm still hoping they lock up all the Barney's now there is something new !!

Is this show on PBS or cable. I don't have cable and the only things we let

watch are Sesame Street, Arthur, Kratt Brothers, Zoom, Teletubbies,

and Barney. Actually doesn't watch Zoom he just likes to dance to the

intro.

Thanks for the info. I'll try and find it on TV ( I may regret this )

Also, great ideas for meal time. We will have to try it. Right now we

distract with tapes of the above shows. He would go crazy with little

wind up toys. We may be able to get some more food in him.

Otherwise is doing fine. Still not talking but getting very close.

Thanks for the great tips.

Ken M

:)

----------

>From: tclfam@...

>To: RSS-Supportonelist

>Subject: Re: RSS

>Date: Tue, Aug 17, 1999, 12:05 PM

>

> From: tclfam@...

>

> KEN!!!! Get with the program!!!! Pokemon is " the " thing for school age

kids!

> loves Pokemon.....actually it's sort of silly! Anyway, I just had to

tease

> you......it's a cartoon. Believe me, will soon be educating you on the

> " latest " cartoon/action toy fad. knows all about Pokemon and the Pikachu

> character!

>

> Hope is doing well. is sleeping better. Some nights are a little

bit

> of a struggle, but most have been very good. We are still working on him,

though,

> about being scared and feeling secure again. At least we are all getting more

> sleep!

>

> Talk to you soon.............

>

> Stacie

>

>

> Ken Merrithew wrote:

>

>>

>>

>> Jodi,

>>

>> What the h@#$ is Pokemon ???

>>

>> Ken M

>>

>> :)

>>

>> ----------

>> >

>> >To: <RSS-Supportonelist>

>> >Subject: Re: RSS

>> >Date: Fri, Aug 13, 1999, 7:36 PM

>> >

>>

>> >

>> >

>> > Stacie, don't worry. You have brought up something I think about every

time

>> > I send an email about Max. If he read these messages, he would KILL me!

>> > Thank goodness he doesn't care to look over my shoulder when I write. He

>> > would rather be playing Pokemon!

>> >

>> > Jodi

>> > RSS

>> >>>

>> >>> >

>> >>> >

>> >>> >Hi ,

>> >>> > is 9yrs. old and weighs 42 1/2 lbs. He is 47 1/2 " . He is on a

>> > high

>> >>> >cal. high fat diet. We are trying to push shakes and high cal. pudding

>> > for

>> >>> >his " extras " now and still get him to eat as much other high cal. stuff

>> > as

>> >>> >possible.

>> >>> > We are having a VERY difficult time right now with his anger. He is

>> >>> >basically angry with being different. He hates being small, hates

>> > getting

>> >>> >picked on, hates all of the team of Dr.'s we have working to help. I'm

>> > not

>> >>> >sure what else we can do. I read all the e-mails and feel that we are in

>> > a

>> >>> >totally different place, because most of the people that write have

>> > younger

>> >>> >children. had some botched hypospadias surgeries when he was

>> > younger

>> >>> >that had to be revised when he was 5 1/2yrs. old. This was a very

>> > tramatic

>> >>> >thing for him plus he missed lots of kindergarten and 1st grade, which

>> > put

>> >>> >him behind in reading. He spent 2nd grade catching up.

>> >>> > Any ideas out there? Help I have a 9 yr. old who is acting like a

>> >>> >teenager. Pat

>> >>> >

>> >>> >

>> >>> >---------------------------

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  • 5 months later...

Hi KAty,

As I understand it there are 2 parts to RSS. One is the lack of appetite and

the other is growth. Some of the lack of growth is due to poor nutrition

from not eating enough. However, with periactin and a feeding tube the lack

of growth due to poor nutrition can be over come. The other part is just

slow growth. The genetic defect that causes RSS some how interferes with

growth and gives mixed signals to the body (asymetrical growth).

It is hard for me to seperate the 2 when I see go on an eating spree

and then see that he has grown. However I am convinced that the lack of

appetite and the lack of growth are 2 seperate parts of RSS even though

nutrition does affect growth.

In the end, I think they may find that RSS is a defect of 2 or more genes

and not just one. We shall see ( I hope ).

I hope this helps

Ken M

:)

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