Frustrated mom of a teenager

[Guest guest]

Hello-

My name is . I have a 16 year old son. He was diagnosed

when he was 4 weeks old. The last 1 1/2 years have been very

difficult. Cory has been hospitalized at least 6 times in the last

year. He developed diabetes and had a port placed last October.

Cory is great kid but lately it seems like we are both frustrated.

He just wants to pretend that he isn't sick. He does the bare minium

that he has too. If I am not here to see that he does his

treatments, he either won't do them at all or just do the albuterol.

Same goes with the enzymes and medication. He avoids doing his

insulin at all cost. His thinking is that I don't don't feel any

different when I don't do it. He wrote an e-mail to his doctor

telling him that he is just trying to make his life miserable. He

was going to a psychiatrist about a 2 years ago but lately has put up

complete resistance to that. He has a good relationship with his

doctor and talks openly to him. Of course he tells the doctor just

what he wants to here.

I am worried about the long term affects if he continues like this.

There are times that the battle makes the whole house stressful. If

I back off and don't battle then nothing gets done. Everytime he

goes into the hospital he always bounces back as healthy or healthy

than before he went in. Sometimes I think that is the way he

thinks. I can just do nothing, go into the hospital and then feel

good again. I get so worried that sometimes I go to bed and jsut

cry. Having other teenagers I know part of it is a control issue but

at this point he chooses not to be in control. Anyone that has

teenagers that has any good advice I would love to here from you.

[Guest guest]

Hi ,

good to hear from you again, but your news aren't good at all :-((

I have no teenager, but when I remember what it was like when I was

16, my parents then were the last people I would listen to. Is there

a chance that he could talk to other adolescents with CF? Maybe

someone sitting in the same boat could change his mind.

Hope it gets better!

Peace

Torsten

> Hello-

> My name is . I have a 16 year old son. He was diagnosed

> when he was 4 weeks old. The last 1 1/2 years have been very

> difficult. Cory has been hospitalized at least 6 times in the last

> year. He developed diabetes and had a port placed last October.

> Cory is great kid but lately it seems like we are both frustrated.

> He just wants to pretend that he isn't sick. He does the bare

minium

> that he has too. If I am not here to see that he does his

> treatments, he either won't do them at all or just do the

albuterol.

> Same goes with the enzymes and medication. He avoids doing his

> insulin at all cost. His thinking is that I don't don't feel any

> different when I don't do it. He wrote an e-mail to his doctor

> telling him that he is just trying to make his life miserable. He

> was going to a psychiatrist about a 2 years ago but lately has put

up

> complete resistance to that. He has a good relationship with his

> doctor and talks openly to him. Of course he tells the doctor just

> what he wants to here.

> I am worried about the long term affects if he continues like

this.

> There are times that the battle makes the whole house stressful.

If

> I back off and don't battle then nothing gets done. Everytime he

> goes into the hospital he always bounces back as healthy or healthy

> than before he went in. Sometimes I think that is the way he

> thinks. I can just do nothing, go into the hospital and then feel

> good again. I get so worried that sometimes I go to bed and jsut

> cry. Having other teenagers I know part of it is a control issue

but

> at this point he chooses not to be in control. Anyone that has

> teenagers that has any good advice I would love to here from you.

>

[Guest guest]

Hi ,

Welcome to the group. I am sure you will get some great advice here. I hope

that it will help you and Cory.

Mom to Elliot

15mths wcf

[Guest guest]

HI I KNOW HOW YOU FEEL MY DAUGHTER HEATHER WILL BE 17 IN 20 DAYS THE PAST

COUPLE OF YEARS SHE TRIES TO DO THE LEAST AMOUNT OF MEDS AS POSSIBLE SHE HAS

BEEN IN THE HOSPITAL ABOUT 9 TIMES IN A YEAR AND A HALF SHE IS IN THERE NOW

SHE COMES HOME TOMORROW BEEN IN THERE FOR 24 DAYS THIS TIME SHE HAD A BRONCH

DONE TODAY ABOUT A YEAR AND A HALF AGO SHE WAS IN THE HOSPITAL FOR AMONTH HER

PFT WERE SO LOW THE DOCTORS COULDNT UNDERSTAND HOWM SHE WAS GETTING AROUND

SO WELL THEY CAME TO ME PRIVATELY AND EXPRESSED DEEP CONCERN BECAUSE SHE WAS

NOT BEING COMPLIANT SHE HAD ALREADY HAD 3 PORTS THEY WANTED TO DO ANOTHER ONE

BECAUSE HER VEINS WERE SHOT AT THAT AGE OF 15 THEY TOLD ME THEY WANTED HER

PERMISSION I TOLD THEM TO BE STRAIGHT WITH HER AND TELL HER THE TRUTH ABOUT

EVERYTHING WELL THEY TOLD HER THAT SHE NEEDED APORT AFEEDING TUBE AND A BRONC

THEY TOLD HER THAT SHE WOULD NEVER RETURN TO HER BASELINE SHE CRIED AND

WANTED TO KNOW EVERYTHING THEY TOLD HER THEY WOULD NOT DO IT UNLESS SHE

AGREED SHE DID AND NOW SHE IS ALSO ON THE LUNG TRANSPLANT LIST I KNOW IT

SOUNDS HARSH BUT SOMETIMES WE HAVE TO TELL IT TO THEM STRAIGHT AND SCARE THEM

BECAUSE THESE KIDS ARE STRONG AND FIGHTERS AND NO MATTER HOW SICK THEY ARE

THEY LEARN TO COPE WITH IT BUT THEY COME TO A CERTAIN AGE AND THEY HAVE TO

START TAKING SOME RESPONMSIBILITY I WISH I COULD SAY THAT SHE DOES HER MEDS

W/OUT BEING ASKED BUT THATS NOT TRUE WE STILL HAVE FIGHTS ON OUR HANS BUT WE

DONT HAVE TO LIVE IN HER SHOES AND I TAKE ASTEP BACK AND REALIZE THAT SHE

JUSTS WANTS TO BE LIKE ANY OTHER NORMAL KID I GUESS WHAT I AM TRYING TO SAY

IS IT IS PRETTY NORMAL FOR THES KIDS TO FIGHT US BYE LISA

[Guest guest]

Hi ,

Does Cory have any friends w/CF that he gets together

with or corresponds with? The reason I ask is that

I suspect that many of his problems stem from feeling

isolated in this disease. Also, he may feel that it

controls him, and if there is anything a teenager

hates, it's being controlled by something or someone.

I think if he has friends dealing with the same

issues, that he can talk to (especially ones that are

committed to being compliant and are doing well

health-wise), he may feel less isolated and see that

one can exert a certain power over this disease with

the right attitude and by complying with the

treatments.

Also, if you can start getting him involved in

some kind of charity - not necessarily CF but anything

that makes him think of others and all they have to

do to survive day to day - it might open his eyes

to the fact that the world is full of people who have

challenges to deal with, and they can either be

quitters and die young or take charge of their health.

There are a number of truly amazing and inspiring

people on this list and on the bigger CYSTIC-L lists,

that have great attitudes and are really involved

in their own health and care about the health of

others wcf. Get him talking or writing to these

people.

The teen years are really rebellious years. It can

be a challenge to turn all that energy it takes him

to rebel against his treatments and turn it into

a rebellion against the disease itself. Some, if not

all, of the cfers on this list have experienced that

same rebellion. They have come through it realizing

that the treatments and their nagging parents are not

the enemy - they're the CAVALRY - the enemy is

CF.

I hope he sees that soon, and stops fighting the

things

and people that will help him most.

hugs,

C

Mommy to Mick and Alli, 2 yo twins wcf

--- lovnforever lovnforever@...> wrote:

> Hello-

> My name is . I have a 16 year old son. He

> was diagnosed

> when he was 4 weeks old. The last 1 1/2 years have

> been very

> difficult. Cory has been hospitalized at least 6

> times in the last

> year. He developed diabetes and had a port placed

> last October.

> Cory is great kid but lately it seems like we are

> both frustrated.

> He just wants to pretend that he isn't sick. He

> does the bare minium

> that he has too. If I am not here to see that he

> does his

> treatments, he either won't do them at all or just

> do the albuterol.

> Same goes with the enzymes and medication. He

> avoids doing his

> insulin at all cost. His thinking is that I don't

> don't feel any

> different when I don't do it. He wrote an e-mail to

> his doctor

> telling him that he is just trying to make his life

> miserable. He

> was going to a psychiatrist about a 2 years ago but

> lately has put up

> complete resistance to that. He has a good

> relationship with his

> doctor and talks openly to him. Of course he tells

> the doctor just

> what he wants to here.

> I am worried about the long term affects if he

> continues like this.

> There are times that the battle makes the whole

> house stressful. If

> I back off and don't battle then nothing gets done.

> Everytime he

> goes into the hospital he always bounces back as

> healthy or healthy

> than before he went in. Sometimes I think that is

> the way he

> thinks. I can just do nothing, go into the hospital

> and then feel

> good again. I get so worried that sometimes I go to

> bed and jsut

> cry. Having other teenagers I know part of it is a

> control issue but

> at this point he chooses not to be in control.

> Anyone that has

> teenagers that has any good advice I would love to

> here from you.

>

>

>

__________________________________________________

[Guest guest]

Cory does talk to several people over the computer that he has met

during his times in the hospital. I have tried to get him to talk to

others on some of the lists and such but he refuses. There are times

when he gets like this that he even refuses to talk to those friends

but for the most part the group on them get together a couple of

times a week and chat over the computer. I know that one of the

problems is that most of them have all been battling the same as

Cory. Thay have all been hospitalized as frequently as the rest.

Because of this, they have developed some very good friendship. We

don't live close to any of them so his only way of communicating with

them is over the computer

Cory is involved in helping other people a lot. i am a special

education teacher and he has been helping with Special olympics for

the last 5 years plus he is a camp counsler and has been doing this

for the last 2 years