Re: New Member Don Perkins

[Guest guest]

Don, welcome to the CREW. I am fairly new myself. I am curious to know,

does any of your other family members have NF2 or do you think his was a

mutation from birth? I have been told that NF2 does not skip generations.

Maybe I wan misinformed. Does anyone else out there have an answer for that?

in Illinois

[Guest guest]

Hi Don,

Welcome to the crew. My name is and i am from the ny area. I also

have a teenage daughter with nf2. Feel free to email me through the crew or

privately. You ask some very valid questions and the best advice i can give

you is....let your son live his life and when any obsacles face him...just

take it as it comes and get the best resources available to him. I find that

letting my daughter know whats going on helps her keep herself in control of

her limits. Its really hard i know as a parent and its even harder for them

but i have to say that a is a very determined young lady and i am

proud of her. Again welcome and i hope to speak to you soon. from ny.

[Guest guest]

Welcome Don to the Crew

My two sons both have NF2 and I have found with my boys, who I might add

both had Acoustic Neuroma surgery within the last 18 mths, they have a basic

knowledge of how serious this condition can be, but are happy to be guided

by their Neuro Surgeons in the " wait and watch " - " get on, live your life

and not let it be dominated by NF2 " .

They know I belong to the Crew, but never ask questions. I tell them some

of the good stories that I hear, but that's all.

I suppose the time may come when they want to know more, but not at this

stage. They are 30 & 31.

the eldest searched the Internet and read all he could when I was

first diagnosed and from conversations with Brendon with may have done the

same. Can I suggest that you give your son the opportunity to look up the

sites and leave it up to him. Teenagers are very smart and don't want to be

kept in the dark. It also helps them to feel like they have some control.

Luckily my boys were late 20's when diagnosed.

Many of the Crew members have younger children and will be in a better

situation to advise.

Good luck Don, I'll read your posts and follow your families progress.

ine from Australia

New Member Don Perkins

> Name: Don Perkins

> Location: Texas

> email: daddon57@...

> Relationship: Family

>

> I have a teenage son who was diagnosed with NF2 a little over a year ago.

I

> am trying to cope with what this means in his life.

[Guest guest]

> same. Can I suggest that you give your son the opportunity to look up the

> sites and leave it up to him. Teenagers are very smart and don't want to be

> kept in the dark. It also helps them to feel like they have some control.

> Luckily my boys were late 20's when diagnosed.

> Many of the Crew members have younger children and will be in a better

> situation to advise.

> Good luck Don, I'll read your posts and follow your families progress.

> ine from Australia

I think an important consideration is, if they want to look it up, they will. NF

has many scarey facets and one of it's big ones is basically it treats no two

people the same. You want to let your son know that it's okay to talk with you

about it and express any concerns before he is trolling the internet and thinks

he will end up like the Elephant man (I know, I know)

I was diagnosed at birth (complications at Birth which they quickly labeled Von

RecklingHausers Disease.. Later rediagnosed as NF2) and as a child growing up in

the Pre-Internet days I didn't have as many ways to research it, but my parents

didn't take any time to explain it to me. Yes at one point I was afraid I'd end

up like the Elephant man. For awhile having NF2 was a neat novelty, it got me

out of gym class , but then it started to show it's serious side and my hearing

started to dwindle. Luckily I was 18 by then and I sucked up all the information

I could get ahold of.

So I do agree with ine that it's best to let your son take the lead on how

much he wants to know, but if he has a quest to learn, make sure that you help

him balance out the " bad " with the good. Compared to some info, NF2 is not as

bad as it sounds.

Pete

--

Brayman ICQ # 66709621

[Guest guest]

When my son was 1st diagnosed with NF2 at the age of 12....People kept

thinking he'll look like a freak when it gets worse....all they thought of

was the Elephant Man's disease....It was frustrating trying to tell people

that the Elephant Man's disease is called Protheus Disease and there is no

way that will happen to my son.....Most of that coming from my family....at

1st my son wouldnt talk about it....but then he met this great kid in grade

8 and 9 yrs later she is the one my son talks to when he gets angry and

frustrated with thise disease....Once in awhile he curls up beside me and

cry's his eye's out and i let him say what's on his mind....I have never

forced him to talk to me...I find he backs off more if i keep telling him to

talk to me....As long as he knows i'm there for him 24-7 he's quit

happy...He is 21 now..lives on with friends....but he knows i'm an hour

away...and he calls me every nite...Just to tell me he loves me...and he

knows my door is open to him always....He's my only one and he is one hell

of a kid...There's nothing i wouldnt do for him....Pam Lakeman

Re: New Member Don Perkins

>

> > same. Can I suggest that you give your son the opportunity to look up

the

> > sites and leave it up to him. Teenagers are very smart and don't want

to be

> > kept in the dark. It also helps them to feel like they have some

control.

> > Luckily my boys were late 20's when diagnosed.

> > Many of the Crew members have younger children and will be in a better

> > situation to advise.

> > Good luck Don, I'll read your posts and follow your families progress.

> > ine from Australia

>

> I think an important consideration is, if they want to look it up, they

will. NF has many scarey facets and one of it's big ones is basically it

treats no two people the same. You want to let your son know that it's okay

to talk with you about it and express any concerns before he is trolling the

internet and thinks he will end up like the Elephant man (I know, I know)

>

> I was diagnosed at birth (complications at Birth which they quickly

labeled Von RecklingHausers Disease.. Later rediagnosed as NF2) and as a

child growing up in the Pre-Internet days I didn't have as many ways to

research it, but my parents didn't take any time to explain it to me. Yes at

one point I was afraid I'd end up like the Elephant man. For awhile having

NF2 was a neat novelty, it got me out of gym class , but then it started to

show it's serious side and my hearing started to dwindle. Luckily I was 18

by then and I sucked up all the information I could get ahold of.

>

> So I do agree with ine that it's best to let your son take the lead on

how much he wants to know, but if he has a quest to learn, make sure that

you help him balance out the " bad " with the good. Compared to some info, NF2

is not as bad as it sounds.

>

> Pete

> --

> Brayman ICQ # 66709621

>

>

>

>

>

[Guest guest]

well you are in a good state, if you have to deal with NF. Come onyou Texas

members, tell him about the Texas NF Association, s? marie

New Member Don Perkins

>Name: Don Perkins

>Location: Texas

>email: daddon57@...

>Relationship: Family

>

> I have a teenage son who was diagnosed with NF2 a little over a year ago.

I

>am trying to cope with what this means in his life. He wants to ignore it

>and try and lead a normal life. From what I have read this disease can

wreck

>havoc and there is very little known about it in the medical community.

>

>I am looking for support from others dealing with this disease, especially

>from other parents of children with NF2. How much of the future do you tell

>them? What is the future for them? Where are the centers of NF2 knowledge

in

>this great nation of ours?

>

>

>Don

>

>

>

>

>

>

>

>

>

[Guest guest]

NF2 does not skip generations, but 50% of the cases are sporadic, which

means they just start with you. Marie

Re: New Member Don Perkins

>Don, welcome to the CREW. I am fairly new myself. I am curious to know,

>does any of your other family members have NF2 or do you think his was a

>mutation from birth? I have been told that NF2 does not skip generations.

>Maybe I wan misinformed. Does anyone else out there have an answer for

that?

>in Illinois

>

>

>

>

[Guest guest]

Hi Marie....About skipping a generation...My father has NF1...cafe au

laits....lumps all over his chest and back....a couple of sisters with cafe

au lait's.....My son has NF2.....I have absolutley nothing....Ive been to 2

Genetics clinics....Tested me from head to toe.....Absolutley

nothing.....They are just as baffled to.....Pam

Re: New Member Don Perkins

>

>

> >Don, welcome to the CREW. I am fairly new myself. I am curious to

know,

> >does any of your other family members have NF2 or do you think his was a

> >mutation from birth? I have been told that NF2 does not skip

generations.

> >Maybe I wan misinformed. Does anyone else out there have an answer for

> that?

> >in Illinois

> >

> >

> >

> >

[Guest guest]

You should send your history to Mia MacCollin and see what she says; I agree

with you, you must be a " textbook family " ! Marie

Re: New Member Don Perkins

>Hi Marie....About skipping a generation...My father has NF1...cafe au

>laits....lumps all over his chest and back....a couple of sisters with cafe

>au lait's.....My son has NF2.....I have absolutley nothing....Ive been to 2

>Genetics clinics....Tested me from head to toe.....Absolutley

>nothing.....They are just as baffled to.....Pam

> Re: New Member Don Perkins

>>

>>

>> >Don, welcome to the CREW. I am fairly new myself. I am curious to

>know,

>> >does any of your other family members have NF2 or do you think his was a

>> >mutation from birth? I have been told that NF2 does not skip

>generations.

>> >Maybe I wan misinformed. Does anyone else out there have an answer for

>> that?

>> >in Illinois

>> >

>> >

>> >

>> >

[Guest guest]

Hi Sue....I hear ya about the future...I sit here alot in the evenings...cry

my eye's out and ask " WHY " did this happen to my son...i try very hard not

to get upset around ....I like to pass myself off as a tough

broad...lol...some days it doesnt work...I wonder if my son will be here in

10 yrs...or wont he.... was diagnosed at 12...with a lump in his

neck...then they snowballed after that....He has had 3 Left Acostic

Neuromas...2 were regrowths...and he has had several removed from his ear

canal and 3 below his right eye and 1 on the nerve of his right eye...He is

trying to have an MRI...he has lately developed Claustrophobia...and i dont

blame him..Thats a narrow tunnel....He has 3 on the brain stem and they want

to figure out what they should do.... is terrified...So am i....He's

scared if they open his skull again he'll die.....Thats my fear to...But its

all in the doctor's hands...The one he has in Edmonton is

terrific...so...keep your fingers crossed....All my best to you and yours

Sue.....Pam

Re: New Member Don Perkins

> >

> > >

> > > > same. Can I suggest that you give your son the opportunity to look

up

> > the

> > > > sites and leave it up to him. Teenagers are very smart and don't

want

> > to be

> > > > kept in the dark. It also helps them to feel like they have some

> > control.

> > > > Luckily my boys were late 20's when diagnosed.

> > > > Many of the Crew members have younger children and will be in a

better

> > > > situation to advise.

> > > > Good luck Don, I'll read your posts and follow your families

progress.

> > > > ine from Australia

> > >

> > > I think an important consideration is, if they want to look it up,

they

> > will. NF has many scarey facets and one of it's big ones is basically it

> > treats no two people the same. You want to let your son know that it's

okay

> > to talk with you about it and express any concerns before he is trolling

the

> > internet and thinks he will end up like the Elephant man (I know, I

know)

> > >

> > > I was diagnosed at birth (complications at Birth which they quickly

> > labeled Von RecklingHausers Disease.. Later rediagnosed as NF2) and as a

> > child growing up in the Pre-Internet days I didn't have as many ways to

> > research it, but my parents didn't take any time to explain it to me.

Yes at

> > one point I was afraid I'd end up like the Elephant man. For awhile

having

> > NF2 was a neat novelty, it got me out of gym class , but then it started

to

> > show it's serious side and my hearing started to dwindle. Luckily I was

18

> > by then and I sucked up all the information I could get ahold of.

> > >

> > > So I do agree with ine that it's best to let your son take the

lead on

> > how much he wants to know, but if he has a quest to learn, make sure

that

> > you help him balance out the " bad " with the good. Compared to some info,

NF2

> > is not as bad as it sounds.

> > >

> > > Pete

> > > --

> > > Brayman ICQ # 66709621

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Pam. I was glad to hear that your son has found a good friend to talk to.

My son is 23 and was diagnosed over a year ago and has had two surgeries to

remove AN from both auditory nerves. As a result of the surgery and size of the

tumors he is deaf. He does have an ABI which was just hooked up a month ago so

we are working on that. He doesn't have a good friend. Since school people

have moved away or went on to other things so he really doesn't have a social

groupother than the people when he is at work. People sometimes just don't

understand I guess. I know how much more helpful it would be for him to have

someone like that but he is also a great kid and he has a loving and caring

family that surrounds him. He still lives with us and sometimes what the future

holds seems awfully scary and I wish there was more we could do for him. Sue

Bacher

PJL wrote:

> When my son was 1st diagnosed with NF2 at the age of 12....People kept

> thinking he'll look like a freak when it gets worse....all they thought of

> was the Elephant Man's disease....It was frustrating trying to tell people

> that the Elephant Man's disease is called Protheus Disease and there is no

> way that will happen to my son.....Most of that coming from my family....at

> 1st my son wouldnt talk about it....but then he met this great kid in grade

> 8 and 9 yrs later she is the one my son talks to when he gets angry and

> frustrated with thise disease....Once in awhile he curls up beside me and

> cry's his eye's out and i let him say what's on his mind....I have never

> forced him to talk to me...I find he backs off more if i keep telling him to

> talk to me....As long as he knows i'm there for him 24-7 he's quit

> happy...He is 21 now..lives on with friends....but he knows i'm an hour

> away...and he calls me every nite...Just to tell me he loves me...and he

> knows my door is open to him always....He's my only one and he is one hell

> of a kid...There's nothing i wouldnt do for him....Pam Lakeman

> Re: New Member Don Perkins

>

> >

> > > same. Can I suggest that you give your son the opportunity to look up

> the

> > > sites and leave it up to him. Teenagers are very smart and don't want

> to be

> > > kept in the dark. It also helps them to feel like they have some

> control.

> > > Luckily my boys were late 20's when diagnosed.

> > > Many of the Crew members have younger children and will be in a better

> > > situation to advise.

> > > Good luck Don, I'll read your posts and follow your families progress.

> > > ine from Australia

> >

> > I think an important consideration is, if they want to look it up, they

> will. NF has many scarey facets and one of it's big ones is basically it

> treats no two people the same. You want to let your son know that it's okay

> to talk with you about it and express any concerns before he is trolling the

> internet and thinks he will end up like the Elephant man (I know, I know)

> >

> > I was diagnosed at birth (complications at Birth which they quickly

> labeled Von RecklingHausers Disease.. Later rediagnosed as NF2) and as a

> child growing up in the Pre-Internet days I didn't have as many ways to

> research it, but my parents didn't take any time to explain it to me. Yes at

> one point I was afraid I'd end up like the Elephant man. For awhile having

> NF2 was a neat novelty, it got me out of gym class , but then it started to

> show it's serious side and my hearing started to dwindle. Luckily I was 18

> by then and I sucked up all the information I could get ahold of.

> >

> > So I do agree with ine that it's best to let your son take the lead on

> how much he wants to know, but if he has a quest to learn, make sure that

> you help him balance out the " bad " with the good. Compared to some info, NF2

> is not as bad as it sounds.

> >

> > Pete

> > --

> > Brayman ICQ # 66709621

> >

> >

> >

> >

> >

[Guest guest]

Hi Pam, it sounds like you and your son have been through so much already. I

know exactly where you are coming from trying to put on a good front but some

days it is really difficult. I guess the best we can do is take it one day at a

time as there are no guarantees in life for any of us. It's just so hard when

it is your child. Like you said it is in the hands of the doctors when it comes

to this disease. I do hope that with technology that our sons will see some new

break throughs in treatment for this disease and a way to stop these tumors from

growing. Thank you for sharing as it helps to know that others have those same

feelings and fears. Take care sue

PJL wrote:

> Hi Sue....I hear ya about the future...I sit here alot in the evenings...cry

> my eye's out and ask " WHY " did this happen to my son...i try very hard not

> to get upset around ....I like to pass myself off as a tough

> broad...lol...some days it doesnt work...I wonder if my son will be here in

> 10 yrs...or wont he.... was diagnosed at 12...with a lump in his

> neck...then they snowballed after that....He has had 3 Left Acostic

> Neuromas...2 were regrowths...and he has had several removed from his ear

> canal and 3 below his right eye and 1 on the nerve of his right eye...He is

> trying to have an MRI...he has lately developed Claustrophobia...and i dont

> blame him..Thats a narrow tunnel....He has 3 on the brain stem and they want

> to figure out what they should do.... is terrified...So am i....He's

> scared if they open his skull again he'll die.....Thats my fear to...But its

> all in the doctor's hands...The one he has in Edmonton is

> terrific...so...keep your fingers crossed....All my best to you and yours

> Sue.....Pam

> Re: New Member Don Perkins

> > >

> > > >

> > > > > same. Can I suggest that you give your son the opportunity to look

> up

> > > the

> > > > > sites and leave it up to him. Teenagers are very smart and don't

> want

> > > to be

> > > > > kept in the dark. It also helps them to feel like they have some

> > > control.

> > > > > Luckily my boys were late 20's when diagnosed.

> > > > > Many of the Crew members have younger children and will be in a

> better

> > > > > situation to advise.

> > > > > Good luck Don, I'll read your posts and follow your families

> progress.

> > > > > ine from Australia

> > > >

> > > > I think an important consideration is, if they want to look it up,

> they

> > > will. NF has many scarey facets and one of it's big ones is basically it

> > > treats no two people the same. You want to let your son know that it's

> okay

> > > to talk with you about it and express any concerns before he is trolling

> the

> > > internet and thinks he will end up like the Elephant man (I know, I

> know)

> > > >

> > > > I was diagnosed at birth (complications at Birth which they quickly

> > > labeled Von RecklingHausers Disease.. Later rediagnosed as NF2) and as a

> > > child growing up in the Pre-Internet days I didn't have as many ways to

> > > research it, but my parents didn't take any time to explain it to me.

> Yes at

> > > one point I was afraid I'd end up like the Elephant man. For awhile

> having

> > > NF2 was a neat novelty, it got me out of gym class , but then it started

> to

> > > show it's serious side and my hearing started to dwindle. Luckily I was

> 18

> > > by then and I sucked up all the information I could get ahold of.

> > > >

> > > > So I do agree with ine that it's best to let your son take the

> lead on

> > > how much he wants to know, but if he has a quest to learn, make sure

> that

> > > you help him balance out the " bad " with the good. Compared to some info,

> NF2

> > > is not as bad as it sounds.

> > > >

> > > > Pete

> > > > --

> > > > Brayman ICQ # 66709621

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

He is

trying to have an MRI...he has lately developed Claustrophobia...and i dont

blame him..Thats a narrow tunnel

Hi Pam, I wanted to respond to this...I too developed Claustrophobia after years and years of MRIs. I now ask the Dr ordering the MRI for a prescription for a sedative to take before my MRI and again about half way through (when they take you out of the machine to move you). I agree, the machine is SMALL. That tube is so narrow!

Being Deaf, the earplugs that they offer will not help me. And the machine makes a lot of vibrations. So, I can believe that it makes a lot of noise. If your son can hear some, then I would try the earplugs that are usually offered to MRI patients (sometimes, they're FORCED on us - even us Deafies).

In addition, I've found that imaging helps. I often think of "good" memories. Like... a beautiful day at the beach or something like that. Or I make lists. I've made my shopping list in there before :-)

But, I've found that if you have a real problem, all you have to do is tell them. Sometimes, I can be VERY vocal. My ears may not work, but my voice works just fine :-) They've had to redo some of the scans before. I started yelling. Well, I couldn't breathe :-(. Usually, the MRI machine has a microphone type thing in it. The technicians can talk with you. I think it's a 2-way thing. You can talk to them too. I know they hear me screaming "I want to get out of here. Get me out of here."

But with the sedatives, it's much better. You might want to ask the Dr about them.

June

[Guest guest]

They never ASKED me.

na

Me either, na!! Wow, that guy is LUCKY!!!

June

[Guest guest]

You can talk, but don't talk while the machine is rumbling (taking images)

you'll distort the images if your moving your head/jaw

And yes, all the places I've had MRI's done, ask you beforehand if your

claustorophobic/need sedation.

Pete

On Fri, Nov 16, 2001 at 04:58:50PM -0500, Boob1188@... wrote:

> In a message dated 11/15/2001 9:07:29 PM Eastern Standard Time,

> pjl411@... writes:

>

>

> > He is

> > trying to have an MRI...he has lately developed Claustrophobia...and i dont

> > blame him..Thats a narrow tunnel

>

> Hi Pam, I wanted to respond to this...I too developed Claustrophobia after

> years and years of MRIs. I now ask the Dr ordering the MRI for a

> prescription for a sedative to take before my MRI and again about half way

> through (when they take you out of the machine to move you). I agree, the

> machine is SMALL. That tube is so narrow!

>

> Being Deaf, the earplugs that they offer will not help me. And the machine

> makes a lot of vibrations. So, I can believe that it makes a lot of noise.

> If your son can hear some, then I would try the earplugs that are usually

> offered to MRI patients (sometimes, they're FORCED on us - even us Deafies).

>

> In addition, I've found that imaging helps. I often think of " good "

> memories. Like... a beautiful day at the beach or something like that. Or I

> make lists. I've made my shopping list in there before :-)

>

> But, I've found that if you have a real problem, all you have to do is tell

> them. Sometimes, I can be VERY vocal. My ears may not work, but my voice

> works just fine :-) They've had to redo some of the scans before. I started

> yelling. Well, I couldn't breathe :-(. Usually, the MRI machine has a

> microphone type thing in it. The technicians can talk with you. I think

> it's a 2-way thing. You can talk to them too. I know they hear me screaming

> " I want to get out of here. Get me out of here. "

>

> But with the sedatives, it's much better. You might want to ask the Dr about

> them.

>

> June

--

Brayman ICQ # 66709621

[Guest guest]

They never ASKED me.

na

Re: New Member Don Perkins

You can talk, but don't talk while the machine is rumbling (taking images)

you'll distort the images if your moving your head/jaw

And yes, all the places I've had MRI's done, ask you beforehand if your

claustorophobic/need sedation.

Pete

On Fri, Nov 16, 2001 at 04:58:50PM -0500, Boob1188@... wrote:

> In a message dated 11/15/2001 9:07:29 PM Eastern Standard Time,

> pjl411@... writes:

>

>

> > He is

> > trying to have an MRI...he has lately developed Claustrophobia...and i

dont

> > blame him..Thats a narrow tunnel

>

> Hi Pam, I wanted to respond to this...I too developed Claustrophobia

after

> years and years of MRIs. I now ask the Dr ordering the MRI for a

> prescription for a sedative to take before my MRI and again about half way

> through (when they take you out of the machine to move you). I agree, the

> machine is SMALL. That tube is so narrow!

>

> Being Deaf, the earplugs that they offer will not help me. And the

machine

> makes a lot of vibrations. So, I can believe that it makes a lot of

noise.

> If your son can hear some, then I would try the earplugs that are usually

> offered to MRI patients (sometimes, they're FORCED on us - even us

Deafies).

>

> In addition, I've found that imaging helps. I often think of " good "

> memories. Like... a beautiful day at the beach or something like that.

Or I

> make lists. I've made my shopping list in there before :-)

>

> But, I've found that if you have a real problem, all you have to do is

tell

> them. Sometimes, I can be VERY vocal. My ears may not work, but my voice

> works just fine :-) They've had to redo some of the scans before. I

started

> yelling. Well, I couldn't breathe :-(. Usually, the MRI machine has a

> microphone type thing in it. The technicians can talk with you. I think

> it's a 2-way thing. You can talk to them too. I know they hear me

screaming

> " I want to get out of here. Get me out of here. "

>

> But with the sedatives, it's much better. You might want to ask the Dr

about

> them.

>

> June

--

Brayman ICQ # 66709621

[Guest guest]

Okay, I'm behind on my e-mails. Got home last night

after our first basketball game of the season; got

beat by 33 points! I'm just now sobering up...

Just kidding! s is dry, I can't find a beer to

save my life.

Don, Where at in Texas are you? I'm in s, 30

miles north of Odessa/Midland.

I was diagnosed at the age of 20, while in college, so

I know what your son is going through. I can also

share some of my parents' experiences. And, to top it

all off, my daughter, 4, also has NF2. I can tell you

what I've learned, what doctors to go to/avoid, and

yes, about the Texas NF(mostly-1-but-occasionally-2)

Foundation.

Glad to have you here...

--- Marie Drew wrote:

> well you are in a good state, if you have to deal

> with NF. Come onyou Texas

> members, tell him about the Texas NF Association,

> s? marie

> New Member Don Perkins

>

>

> >Name: Don Perkins

> >Location: Texas

> >email: daddon57@...

> >Relationship: Family

> >

> > I have a teenage son who was diagnosed with NF2 a

> little over a year ago.

> I

> >am trying to cope with what this means in his life.

> He wants to ignore it

> >and try and lead a normal life. From what I have

> read this disease can

> wreck

> >havoc and there is very little known about it in

> the medical community.

> >

> >I am looking for support from others dealing with

> this disease, especially

> >from other parents of children with NF2. How much

> of the future do you tell

> >them? What is the future for them? Where are the

> centers of NF2 knowledge

> in

> >this great nation of ours?

> >

> >

> >Don

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

--- Jennette Braaten wrote:

> Name: Don Perkins

> Location: Texas

> Where are the

> centers of NF2 knowledge in

> this great nation of ours?

>

>

> Don

>

Knowledgable NF doctors are indeed hard to find. Here

in Texas, there are at least 5 NF clinics, where

doctors from different specialties form a team (i.e.-

a geneticist, an eye doc., a neurosurgeon, etc.) to

meet and treat those with NF2. Problem is, if you're

out here in the Sticks like me, they're all in East

Texas.

There's one in Dallas, two in Houston (Tx. Children's

and MD ), one in San , one in Temple or

Austin... There may be more now.

You also don't have to restrict yourself to an NF

clinic. My neurosurgeon is in Dallas, and he is

knowledgable, but does not work for an NF clinic.

I would be happy to share with you what I have been

through/learned.

__________________________________________________

[Guest guest]

Pam here...You Americans are lucky to have so many NF Clinics and Doctor's

knowledgable in NF....Here in Canada we have only 3 clinics and they are

quite a distance from alot of people...The genetics clinic in Edmonton is

excellant...but the Doc admitted he doesnt know much about NF2...but he

tries his best.....The Neurosurgeons that treat my son are great....I'm

trying to find out answers fro our Gov about funding for research....so i

will see what happens.....Pam

Re: New Member Don Perkins

>

> --- Jennette Braaten wrote:

> > Name: Don Perkins

> > Location: Texas

>

> > Where are the

> > centers of NF2 knowledge in

> > this great nation of ours?

> >

> >

> > Don

> >

>

> Knowledgable NF doctors are indeed hard to find. Here

> in Texas, there are at least 5 NF clinics, where

> doctors from different specialties form a team (i.e.-

> a geneticist, an eye doc., a neurosurgeon, etc.) to

> meet and treat those with NF2. Problem is, if you're

> out here in the Sticks like me, they're all in East

> Texas.

>

> There's one in Dallas, two in Houston (Tx. Children's

> and MD ), one in San , one in Temple or

> Austin... There may be more now.

>

> You also don't have to restrict yourself to an NF

> clinic. My neurosurgeon is in Dallas, and he is

> knowledgable, but does not work for an NF clinic.

>

> I would be happy to share with you what I have been

> through/learned.

>

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Don,

Sorry to read of your newfound information about your teenage son. Wow, do I

know how you must be feeling? This is really tough. No other way to

describe it. My daughter is now 28 and was diagnosed at 15. My suggestion

is to let this young man live and enjoy his life and tell him little of what

to expect until it is eminent. After all, we all live on the edge each day.

The anxiety that knowing the possibilities can cause, is a lot for a teenager

who already has so much as a normal teenager to deal with as he matures. If

there is nothing going on at the moment, I'd just enjoy each day with him and

love him as you have. For you, tough, I believe we can get all the info

possible, watch closely for any signs whatsoever so that we can move in on

the tumors with the best personnel and hopefully at the best time. My very

best to you. Feel free to write any time. Vicki

[Guest guest]

Don,

I thought I might add to this because I was over protective with my son

not wanting him do do things that he might get hurt or would be hard on him

because of his Illness ( NF) well I protected him right out of his life when

he could walk and run and go I kept him back and than the NF took over he is

paralyzed and gee he never had a chance to live ... not really ... so let

your son live a normal life

when you have to explain things do so till then who is to say what and who

normal is ? ... hugs Lois

Re: New Member Don Perkins

> Don,

> Sorry to read of your newfound information about your teenage son. Wow,

do I

> know how you must be feeling? This is really tough. No other way to

> describe it. My daughter is now 28 and was diagnosed at 15. My

suggestion

> is to let this young man live and enjoy his life and tell him little of

what

> to expect until it is eminent. After all, we all live on the edge each

day.

> The anxiety that knowing the possibilities can cause, is a lot for a

teenager

> who already has so much as a normal teenager to deal with as he matures.

If

> there is nothing going on at the moment, I'd just enjoy each day with him

and

> love him as you have. For you, tough, I believe we can get all the info

> possible, watch closely for any signs whatsoever so that we can move in on

> the tumors with the best personnel and hopefully at the best time. My

very

> best to you. Feel free to write any time. Vicki

>

>

>

>

[Guest guest]

Lois, when I read your post....my thoughts went back several years.

In 1981 they thought they had found my 8 year old son to have Nf2,

inherited from me. Well, they finally decided he did not have Nf2.

Brent, my son, lived a normal childhood. When he was barely 17 the

signs was inevitable that he had Nf2. The MRI confirmed it and now

he is deaf and has had several spinal tumors taken out and many more

left. What I want to say, I am glad they did

not find the Nf2 when he was 8 because he would have been sheltered

and

all we could have done was watch the tumors grow until taken out when

they were. It is one thing to live with Nf2 but to watch your child

live with it is another. Don, put your faith in God and let Him guide

you and hopefully you, your son and family can find something

positive in your situation. A friend of mine always tells me in her

letters to try and get something good from each day. One day at a

time is how we have or need to live but as humans we have to plan for

the future. God bless you and your son.

Shrum

[Guest guest]

Hi .,

Yes I think you are right on with this one, We all need to learn to

live one day at a time ... I just can't seem to master that but oh how I'm

going to try , If there is one thing I know its that no matter what happens

with My son's health I'll stand by all his decisions .and we'll find

something to laugh about every day . and we'll enjoy every day to its

fullest that way we'll never be sorry or sad ... Its hard to watch the

tumors grow And see what a child must suffer at the hands of an illness and

the world . That's why we have to make good times to out weigh the bad....

and you know as I look back all those bad times brought Mike and I close and

united us in all we did . till the bad times were the good times ... HUGS

Lois

Re: New member Don Perkins

> Lois, when I read your post....my thoughts went back several years.

> In 1981 they thought they had found my 8 year old son to have Nf2,

> inherited from me. Well, they finally decided he did not have Nf2.

> Brent, my son, lived a normal childhood. When he was barely 17 the

> signs was inevitable that he had Nf2. The MRI confirmed it and now

> he is deaf and has had several spinal tumors taken out and many more

> left. What I want to say, I am glad they did

> not find the Nf2 when he was 8 because he would have been sheltered

> and

> all we could have done was watch the tumors grow until taken out when

> they were. It is one thing to live with Nf2 but to watch your child

> live with it is another. Don, put your faith in God and let Him guide

> you and hopefully you, your son and family can find something

> positive in your situation. A friend of mine always tells me in her

> letters to try and get something good from each day. One day at a

> time is how we have or need to live but as humans we have to plan for

> the future. God bless you and your son.

>

> Shrum

>

>

>

>

>

[Guest guest]

Yours words are very true. In my family we were saved all those years of

worry and fretting.

I send my love and support to you parents, also to your children who show

strength of character way beyond their years.

ine

Re: New member Don Perkins

> Lois, when I read your post....my thoughts went back several years.

> In 1981 they thought they had found my 8 year old son to have Nf2,

> inherited from me. Well, they finally decided he did not have Nf2.

> Brent, my son, lived a normal childhood. When he was barely 17 the

> signs was inevitable that he had Nf2. The MRI confirmed it and now

> he is deaf and has had several spinal tumors taken out and many more

> left. What I want to say, I am glad they did

> not find the Nf2 when he was 8 because he would have been sheltered

> and

> all we could have done was watch the tumors grow until taken out when

> they were. It is one thing to live with Nf2 but to watch your child

> live with it is another. Don, put your faith in God and let Him guide

> you and hopefully you, your son and family can find something

> positive in your situation. A friend of mine always tells me in her

> letters to try and get something good from each day. One day at a

> time is how we have or need to live but as humans we have to plan for

> the future. God bless you and your son.

>

> Shrum

>

>

>

>

>