Re: New Member Ken Shigley

[Guest guest]

wOW i AM impressed; that little girl has a lot of problems dealtl her, but

she also has a lot going for her in having you for parents; I am very

impressed with what you have done and are doing; It is very interesting the

AD and LD you talk about, as docs tend to say that is only with NF1, but

there has been talk on the board about a crossover between NF1 and NF2. My

only comment as a person recently defeaned (nd not young and now with total

facial paralysis is that facial paralysis and the accompanying problems are

far worse than deafness; keep encouraging your daughter like you are to live

for today; i know it must be difficlt not to cocoon them in love and protect

them from life, but that is not wise; she needs to be strong to face what

life is g oing to give her. When I woke up deaf and paralyzed I felt sorry

for myself; but I quickly thought of picture I hAD JUSTseen in life mag, of

guy who lived with his family by rr tracks in Africa' he got hit my train,

lost arm and leg; now he begs, supports 3 kids on 80 cents a day; and yet he

said he was blessedbecause of his 3 children; life is not what you have, it

is how you look at it. good luck marie

Bobby and Carla wrote:

>

> Sent: Tuesday, May 09, 2000

>

> My name is Ken Shigley. I am a 48 year old lawyer in Atlanta. My

> daughter, who will be 13 next month, has NF2 which was diagnosed when

> she was in first grade when auditory testing revealed she was deaf in

> the right ear. The summer after second grade she had facial paralysis

> on the right side from impingement of an NF2 tumor on her facial motor

> nerve. Surgery at House Ear Institute in Los Angeles was miraculously

> successful in totally restoring facial mobility. (The prayer support was

> intense!) She has other NF2 lesions intracranially (including one on the

> auditory nerve of her good ear) and on her spinal cord. However, MRI's

> every 6 to 12 months since '96 have shown no change, and the hearing in

> her good ear remains perfect. In addition to her apparently dormant

> NF2, she does have ADHD, and deficits in central auditory processing,

> language learning, social skills and gross motor skills. However, her

> SSAT scores were good and she tests nearly two years above grade level

> in math. Next fall she will enter a long-established, well-endowed

> private school that focuses heavily on her variety of LD issues, with

> the projection by her psychologist and the school's evaluator that she

> will need to stay there two years before moving on to a mainstream high

> school for college prep. (I'm thankful we live in a city where such

> options are available, and that we can swing it.)

> While she doesn't have a lot of athletic prowess, to put in mildly,

> neither did I. She enjoys participating in a relatively non-competitive

> swim team, has completed several junior road races (not willing to try a

> 10K yet), and hopes to go out for crew in another year. She enjoys

> camping, and will got on a two-week wilderness program (back country

> backpacking, rock climbing, kayaking, etc.) this summer, followed by a

> week at Space Camp. Her social skills have a great deal of room for

> improvement, but she greatly enjoys our church's youth fellowship group

> (won't miss a meeting or a retreat) and Girl Scouts (just bridged over

> from Junior to Cadette, and has set goal to earn GSA Silver Award). She

> recently flew to NYC for " Take Your Daughter to Work Day " with her aunt

> at one of the top banks, and got a lot of encouragement about attaining

> success despite ADHD and LD obstacles. This week she is printing up her

> babysitting business cards with attached refrigerator magnets to

> distribute in the neighborhood as soon as she turns 13.

> Dr. Mia MacCollin at Harvard did the genetic analysis on tissue samples

> from my daughter and my wife, who had a large benign meningioma removed

> years earlier. Her results were suggestive but not conclusive.

>

> My particular interests in NF2 include:

> * links to ADHD and LD

> * NF2 issues in puberty and beyond

> * research re: gene therapy and suppression of tumor growth

> * success stories of people with NF2, ADHD and LD challenges

> * treatment options

> * any research on lifestyle choices, e.g., diet, exercise, etc., that

> can be helpful re: NF2

> * college and career choices for kids with NF2, ADHD and LD challenges

> * reproductive issues in NF2

>

> Thank you.

>

> _____________________________________________

> NetZero - Defenders of the Free World

> Click here for FREE Internet Access and Email

> http://www.netzero.net/download/index.html

[Guest guest]

welcome ken.b we are a close knit group and many of us know each of

personally even though we ar spread thruout the country and world. if you

have any specific qq's you should just go ahead andask, there are other

parents here with young children with nf2 here. i myself am 30, diagnosed

when i wasd 14, have been deaf since 23, have had 3 other surgeries aside

from the acoustic neuromas. i dont know if i'd consider myself a success

story, but i am doing ok!

cindy

Bobby and Carla wrote:

>

> Sent: Tuesday, May 09, 2000

>

> My name is Ken Shigley. I am a 48 year old lawyer in Atlanta. My

> daughter, who will be 13 next month, has NF2 which was diagnosed when

> she was in first grade when auditory testing revealed she was deaf in

> the right ear. The summer after second grade she had facial paralysis

> on the right side from impingement of an NF2 tumor on her facial motor

> nerve. Surgery at House Ear Institute in Los Angeles was miraculously

> successful in totally restoring facial mobility. (The prayer support was

> intense!) She has other NF2 lesions intracranially (including one on the

> auditory nerve of her good ear) and on her spinal cord. However, MRI's

> every 6 to 12 months since '96 have shown no change, and the hearing in

> her good ear remains perfect. In addition to her apparently dormant

> NF2, she does have ADHD, and deficits in central auditory processing,

> language learning, social skills and gross motor skills. However, her

> SSAT scores were good and she tests nearly two years above grade level

> in math. Next fall she will enter a long-established, well-endowed

> private school that focuses heavily on her variety of LD issues, with

> the projection by her psychologist and the school's evaluator that she

> will need to stay there two years before moving on to a mainstream high

> school for college prep. (I'm thankful we live in a city where such

> options are available, and that we can swing it.)

> While she doesn't have a lot of athletic prowess, to put in mildly,

> neither did I. She enjoys participating in a relatively non-competitive

> swim team, has completed several junior road races (not willing to try a

> 10K yet), and hopes to go out for crew in another year. She enjoys

> camping, and will got on a two-week wilderness program (back country

> backpacking, rock climbing, kayaking, etc.) this summer, followed by a

> week at Space Camp. Her social skills have a great deal of room for

> improvement, but she greatly enjoys our church's youth fellowship group

> (won't miss a meeting or a retreat) and Girl Scouts (just bridged over

> from Junior to Cadette, and has set goal to earn GSA Silver Award). She

> recently flew to NYC for " Take Your Daughter to Work Day " with her aunt

> at one of the top banks, and got a lot of encouragement about attaining

> success despite ADHD and LD obstacles. This week she is printing up her

> babysitting business cards with attached refrigerator magnets to

> distribute in the neighborhood as soon as she turns 13.

> Dr. Mia MacCollin at Harvard did the genetic analysis on tissue samples

> from my daughter and my wife, who had a large benign meningioma removed

> years earlier. Her results were suggestive but not conclusive.

>

> My particular interests in NF2 include:

> * links to ADHD and LD

> * NF2 issues in puberty and beyond

> * research re: gene therapy and suppression of tumor growth

> * success stories of people with NF2, ADHD and LD challenges

> * treatment options

> * any research on lifestyle choices, e.g., diet, exercise, etc., that

> can be helpful re: NF2

> * college and career choices for kids with NF2, ADHD and LD challenges

> * reproductive issues in NF2

>

> Thank you.

>

> _____________________________________________

> NetZero - Defenders of the Free World

> Click here for FREE Internet Access and Email

> http://www.netzero.net/download/index.html

[Guest guest]

welcome ken.b we are a close knit group and many of us know each of

personally even though we ar spread thruout the country and world. if you

have any specific qq's you should just go ahead andask, there are other

parents here with young children with nf2 here. i myself am 30, diagnosed

when i wasd 14, have been deaf since 23, have had 3 other surgeries aside

from the acoustic neuromas. i dont know if i'd consider myself a success

story, but i am doing ok!

cindy

Bobby and Carla wrote:

>

> Sent: Tuesday, May 09, 2000

>

> My name is Ken Shigley. I am a 48 year old lawyer in Atlanta. My

> daughter, who will be 13 next month, has NF2 which was diagnosed when

> she was in first grade when auditory testing revealed she was deaf in

> the right ear. The summer after second grade she had facial paralysis

> on the right side from impingement of an NF2 tumor on her facial motor

> nerve. Surgery at House Ear Institute in Los Angeles was miraculously

> successful in totally restoring facial mobility. (The prayer support was

> intense!) She has other NF2 lesions intracranially (including one on the

> auditory nerve of her good ear) and on her spinal cord. However, MRI's

> every 6 to 12 months since '96 have shown no change, and the hearing in

> her good ear remains perfect. In addition to her apparently dormant

> NF2, she does have ADHD, and deficits in central auditory processing,

> language learning, social skills and gross motor skills. However, her

> SSAT scores were good and she tests nearly two years above grade level

> in math. Next fall she will enter a long-established, well-endowed

> private school that focuses heavily on her variety of LD issues, with

> the projection by her psychologist and the school's evaluator that she

> will need to stay there two years before moving on to a mainstream high

> school for college prep. (I'm thankful we live in a city where such

> options are available, and that we can swing it.)

> While she doesn't have a lot of athletic prowess, to put in mildly,

> neither did I. She enjoys participating in a relatively non-competitive

> swim team, has completed several junior road races (not willing to try a

> 10K yet), and hopes to go out for crew in another year. She enjoys

> camping, and will got on a two-week wilderness program (back country

> backpacking, rock climbing, kayaking, etc.) this summer, followed by a

> week at Space Camp. Her social skills have a great deal of room for

> improvement, but she greatly enjoys our church's youth fellowship group

> (won't miss a meeting or a retreat) and Girl Scouts (just bridged over

> from Junior to Cadette, and has set goal to earn GSA Silver Award). She

> recently flew to NYC for " Take Your Daughter to Work Day " with her aunt

> at one of the top banks, and got a lot of encouragement about attaining

> success despite ADHD and LD obstacles. This week she is printing up her

> babysitting business cards with attached refrigerator magnets to

> distribute in the neighborhood as soon as she turns 13.

> Dr. Mia MacCollin at Harvard did the genetic analysis on tissue samples

> from my daughter and my wife, who had a large benign meningioma removed

> years earlier. Her results were suggestive but not conclusive.

>

> My particular interests in NF2 include:

> * links to ADHD and LD

> * NF2 issues in puberty and beyond

> * research re: gene therapy and suppression of tumor growth

> * success stories of people with NF2, ADHD and LD challenges

> * treatment options

> * any research on lifestyle choices, e.g., diet, exercise, etc., that

> can be helpful re: NF2

> * college and career choices for kids with NF2, ADHD and LD challenges

> * reproductive issues in NF2

>

> Thank you.

>

> _____________________________________________

> NetZero - Defenders of the Free World

> Click here for FREE Internet Access and Email

> http://www.netzero.net/download/index.html

[Guest guest]

In a message dated 5/10/00 6:04:00 PM Eastern Daylight Time,

ldrew292@... writes:

<< life is not what you have, it

is how you look at it. good luck marie >>

I LIKE THIS, MARIE ) Very positive!!!

June

[Guest guest]

Welcome Ken

I have two boys with NF and + me !

You will find it VERY informative here !

Marcus,, Australia

>

>Sent: Tuesday, May 09, 2000

>

>My name is Ken Shigley. I am a 48 year old lawyer in Atlanta. My

>daughter, who will be 13 next month, has NF2 which was diagnosed when

>she was in first grade when auditory testing revealed she was deaf in

>the right ear. The summer after second grade she had facial paralysis

>on the right side from impingement of an NF2 tumor on her facial motor

>nerve. Surgery at House Ear Institute in Los Angeles was miraculously

>successful in totally restoring facial mobility. (The prayer support was

>intense!) She has other NF2 lesions intracranially (including one on the

>auditory nerve of her good ear) and on her spinal cord. However, MRI's

>every 6 to 12 months since '96 have shown no change, and the hearing in

>her good ear remains perfect. In addition to her apparently dormant

>NF2, she does have ADHD, and deficits in central auditory processing,

>language learning, social skills and gross motor skills. However, her

>SSAT scores were good and she tests nearly two years above grade level

>in math. Next fall she will enter a long-established, well-endowed

>private school that focuses heavily on her variety of LD issues, with

>the projection by her psychologist and the school's evaluator that she

>will need to stay there two years before moving on to a mainstream high

>school for college prep. (I'm thankful we live in a city where such

>options are available, and that we can swing it.)

>While she doesn't have a lot of athletic prowess, to put in mildly,

>neither did I. She enjoys participating in a relatively non-competitive

>swim team, has completed several junior road races (not willing to try a

>10K yet), and hopes to go out for crew in another year. She enjoys

>camping, and will got on a two-week wilderness program (back country

>backpacking, rock climbing, kayaking, etc.) this summer, followed by a

>week at Space Camp. Her social skills have a great deal of room for

>improvement, but she greatly enjoys our church's youth fellowship group

>(won't miss a meeting or a retreat) and Girl Scouts (just bridged over

>from Junior to Cadette, and has set goal to earn GSA Silver Award). She

>recently flew to NYC for " Take Your Daughter to Work Day " with her aunt

>at one of the top banks, and got a lot of encouragement about attaining

>success despite ADHD and LD obstacles. This week she is printing up her

>babysitting business cards with attached refrigerator magnets to

>distribute in the neighborhood as soon as she turns 13.

>Dr. Mia MacCollin at Harvard did the genetic analysis on tissue samples

>from my daughter and my wife, who had a large benign meningioma removed

>years earlier. Her results were suggestive but not conclusive.

>

>My particular interests in NF2 include:

>* links to ADHD and LD

>* NF2 issues in puberty and beyond

>* research re: gene therapy and suppression of tumor growth

>* success stories of people with NF2, ADHD and LD challenges

>* treatment options

>* any research on lifestyle choices, e.g., diet, exercise, etc., that

>can be helpful re: NF2

>* college and career choices for kids with NF2, ADHD and LD challenges

>* reproductive issues in NF2

>

>Thank you.

>

>_____________________________________________

>NetZero - Defenders of the Free World

>Click here for FREE Internet Access and Email

>http://www.netzero.net/download/index.html

>

>

>

[Guest guest]

Welcome to the crew Ken,

I also have a daughter who is very close to your daughters age (12). Her

name is a. Maybye they can talk online if she has access to the

internet. You can email me privately if youd like. Again welcome,

from ny

[Guest guest]

,

What is your daughter's condition, and how much has been explained to her

about NF2? Since Anne's surgery in '92 we have been so focused on the

here and now, dealing first with the deaf ear and ostracism upon her return

to school, then with ADHD, LD and social skills issues, that the whole

issue of NF2 and its potential repercussions has been shoved on the back

burner. Anne complains about having to have followup MRI's every year, and

we have told her in broad terms that it's necessary to make sure nothing

has changed since her surgery. The pediatric neurosurgeon in Atlanta who

reviews those MRI's and the ENT who checks her hearing both discuss things

with us in her presence, and show her generally what's on the MRI. She has

been told that she will probably need to adopt any babies she has because

of the risk of her child inheriting her " deaf ear. " However, no one has

ever explained to her that this could result in total deafness, or that she

could wind up in a wheelchair and in pain. For us, NF2 has become the

funnel-shaped black cloud hovering on the horizon, mostly ignored in our

daily lives but with the sinister destructive potential.

Ken

At 12:51 PM 5/11/00 -0400, you wrote:

>Welcome to the crew Ken,

>I also have a daughter who is very close to your daughters age (12). Her

>name is a. Maybye they can talk online if she has access to the

>internet. You can email me privately if youd like. Again welcome,

>from ny

>

L. Shigley

SHIGLEY LAW FIRM, L.L.C.

3166 Mathieson Drive, NE

Suite 200

Atlanta, GA 30305

kshigley@...

http://AtlantaInjuryLawyer.com

Voice: (404)364-1999

Fax: (404)364-0880

[Guest guest]

,

What is your daughter's condition, and how much has been explained to her

about NF2? Since Anne's surgery in '92 we have been so focused on the

here and now, dealing first with the deaf ear and ostracism upon her return

to school, then with ADHD, LD and social skills issues, that the whole

issue of NF2 and its potential repercussions has been shoved on the back

burner. Anne complains about having to have followup MRI's every year, and

we have told her in broad terms that it's necessary to make sure nothing

has changed since her surgery. The pediatric neurosurgeon in Atlanta who

reviews those MRI's and the ENT who checks her hearing both discuss things

with us in her presence, and show her generally what's on the MRI. She has

been told that she will probably need to adopt any babies she has because

of the risk of her child inheriting her " deaf ear. " However, no one has

ever explained to her that this could result in total deafness, or that she

could wind up in a wheelchair and in pain. For us, NF2 has become the

funnel-shaped black cloud hovering on the horizon, mostly ignored in our

daily lives but with the sinister destructive potential.

Ken

At 12:51 PM 5/11/00 -0400, you wrote:

>Welcome to the crew Ken,

>I also have a daughter who is very close to your daughters age (12). Her

>name is a. Maybye they can talk online if she has access to the

>internet. You can email me privately if youd like. Again welcome,

>from ny

>

L. Shigley

SHIGLEY LAW FIRM, L.L.C.

3166 Mathieson Drive, NE

Suite 200

Atlanta, GA 30305

kshigley@...

http://AtlantaInjuryLawyer.com

Voice: (404)364-1999

Fax: (404)364-0880

[Guest guest]

Ken,

is right, the drs. have NO right to tell her that - nor should anyone

for that matter. First off, let me just say that i never even brought this

topic up with my daughter. I feel that when my daughter becomes a mature

adult and the time comes she will make the right decision for herself. Its

not up to me or the drs. All I know is that i will support her decision

either way. a is very aware of whats going on in her life. Very

similar to your situation - deaf on one side and just watching other side. I

felt i have to prepare her the best i could. She is currently taking asl

through the school system (which after i presented the school with her

records and got her special servcices through boces) got her 2 periods a

week of teaching it and she is doing great. a has alot of

determination and is a fighter. She never lets the disease stop her. I

think that at such a young age she has adapted very well and i just felt that

although its rough telling them , its much better to open the communication

and not " fear " but conquer " . I love my daughter and it really really hurts

to watch her suffer, especially for her future, but she brings so much love

my way that i just live for day and enjoy her unconditionally. Ken my

daughters email address is krissy9187@.... Let your daughter write to

her. Sincerely,

[Guest guest]

Ken,

is right, the drs. have NO right to tell her that - nor should anyone

for that matter. First off, let me just say that i never even brought this

topic up with my daughter. I feel that when my daughter becomes a mature

adult and the time comes she will make the right decision for herself. Its

not up to me or the drs. All I know is that i will support her decision

either way. a is very aware of whats going on in her life. Very

similar to your situation - deaf on one side and just watching other side. I

felt i have to prepare her the best i could. She is currently taking asl

through the school system (which after i presented the school with her

records and got her special servcices through boces) got her 2 periods a

week of teaching it and she is doing great. a has alot of

determination and is a fighter. She never lets the disease stop her. I

think that at such a young age she has adapted very well and i just felt that

although its rough telling them , its much better to open the communication

and not " fear " but conquer " . I love my daughter and it really really hurts

to watch her suffer, especially for her future, but she brings so much love

my way that i just live for day and enjoy her unconditionally. Ken my

daughters email address is krissy9187@.... Let your daughter write to

her. Sincerely,

[Guest guest]

Ken,

is right, the drs. have NO right to tell her that - nor should anyone

for that matter. First off, let me just say that i never even brought this

topic up with my daughter. I feel that when my daughter becomes a mature

adult and the time comes she will make the right decision for herself. Its

not up to me or the drs. All I know is that i will support her decision

either way. a is very aware of whats going on in her life. Very

similar to your situation - deaf on one side and just watching other side. I

felt i have to prepare her the best i could. She is currently taking asl

through the school system (which after i presented the school with her

records and got her special servcices through boces) got her 2 periods a

week of teaching it and she is doing great. a has alot of

determination and is a fighter. She never lets the disease stop her. I

think that at such a young age she has adapted very well and i just felt that

although its rough telling them , its much better to open the communication

and not " fear " but conquer " . I love my daughter and it really really hurts

to watch her suffer, especially for her future, but she brings so much love

my way that i just live for day and enjoy her unconditionally. Ken my

daughters email address is krissy9187@.... Let your daughter write to

her. Sincerely,

[Guest guest]

--- " L. Shigley "

wrote:

She has

> been told that she will probably need to adopt any

> babies she has because

> of the risk of her child inheriting her " deaf ear. "

,

I am sorry about your daughter. I have NF2, and I

apparently passed it on to my just-turned 3-year-old

daughter. I know it must be a nightmare at times.

However, my wife and I both knew the chances (50%) of

my passing the gene on to a child, but that in no way

affected our decision. Did we discuss it? Sure. But

in the end, we decided that it should not be a factor.

The doctors had no right to tell this to your

daughter, unless they were discussing the aspects what

NF2 does to the female body during pregnancy. The

hormonal changes during pregnancy may trigger tumor

growth, or act as a catalyst, from what I understand.

But as far as abstaining from having children under

the chance of passing on this disorder, that should be

left up to your daughter and her (future) husband. My

daughter is the absolute joy of our lives, and I

cannot imagine deciding not to have her because she

might get NF2.

Keep up you faith. New breakthroughs are occurring

frequently in technology and medicine. Being deaf

isn't as bad as it was even ten years ago, much less

100 years ago when they were locked up in sanitariums.

We will keep you and your daughter in our prayers.

__________________________________________________

[Guest guest]

,

This was an interesting, good post. I agree completely with what you

said about the doctor. Sometimes the drs., genetics, drs, in particular

think they are god. I've heard stupid stuff from drs.'s mouths myself as

have we all.

K.

Re: New Member Ken Shigley

>

>--- " L. Shigley "

>wrote:

> She has

>> been told that she will probably need to adopt any

>> babies she has because

>> of the risk of her child inheriting her " deaf ear. "

>

>,

>

>I am sorry about your daughter. I have NF2, and I

>apparently passed it on to my just-turned 3-year-old

>daughter. I know it must be a nightmare at times.

>

>However, my wife and I both knew the chances (50%) of

>my passing the gene on to a child, but that in no way

>affected our decision. Did we discuss it? Sure. But

>in the end, we decided that it should not be a factor.

>

>The doctors had no right to tell this to your

>daughter, unless they were discussing the aspects what

>NF2 does to the female body during pregnancy. The

>hormonal changes during pregnancy may trigger tumor

>growth, or act as a catalyst, from what I understand.

>But as far as abstaining from having children under

>the chance of passing on this disorder, that should be

>left up to your daughter and her (future) husband. My

>daughter is the absolute joy of our lives, and I

>cannot imagine deciding not to have her because she

>might get NF2.

>

>Keep up you faith. New breakthroughs are occurring

>frequently in technology and medicine. Being deaf

>isn't as bad as it was even ten years ago, much less

>100 years ago when they were locked up in sanitariums.

>

>

>We will keep you and your daughter in our prayers.

>

>

>

>__________________________________________________

>

[Guest guest]

Dear & Crew,

In my previous post I forgot to mention a few things. My husband and I

have been blessed with three (3) sons whose prsent ages are 19, 17, 16. I/we

CANNOT imagine our lives without them ! We DID seek genetics counseling from

a dr. when we were first married. We were assured that there was a 1 in 3

chance of passing my NF to them. We were told this was a VERY OUTSIDE

chance so to go ahead and have children if we wanted to. We didn't find out

differently until a few months after our third (3rd) son had been born.

We do have the boys evaluated yearly for NF2 symptoms. So far, all are

asymptomatic. Is NF2 a big consideration when discussing having children ???

Yes, absolutely. Should it be the ONLY consideration ? NO !

I know this is a topic that has been discussed on Crew before. I DO

respect everyone's decision about having or not having children.

K.

Re: New Member Ken Shigley

>

>--- " L. Shigley "

>wrote:

> She has

>> been told that she will probably need to adopt any

>> babies she has because

>> of the risk of her child inheriting her " deaf ear. "

>

>,

>

>I am sorry about your daughter. I have NF2, and I

>apparently passed it on to my just-turned 3-year-old

>daughter. I know it must be a nightmare at times.

>

>However, my wife and I both knew the chances (50%) of

>my passing the gene on to a child, but that in no way

>affected our decision. Did we discuss it? Sure. But

>in the end, we decided that it should not be a factor.

>

>The doctors had no right to tell this to your

>daughter, unless they were discussing the aspects what

>NF2 does to the female body during pregnancy. The

>hormonal changes during pregnancy may trigger tumor

>growth, or act as a catalyst, from what I understand.

>But as far as abstaining from having children under

>the chance of passing on this disorder, that should be

>left up to your daughter and her (future) husband. My

>daughter is the absolute joy of our lives, and I

>cannot imagine deciding not to have her because she

>might get NF2.

>

>Keep up you faith. New breakthroughs are occurring

>frequently in technology and medicine. Being deaf

>isn't as bad as it was even ten years ago, much less

>100 years ago when they were locked up in sanitariums.

>

>

>We will keep you and your daughter in our prayers.

>

>

>

>__________________________________________________

>

[Guest guest]

Dear & Crew,

In my previous post I forgot to mention a few things. My husband and I

have been blessed with three (3) sons whose prsent ages are 19, 17, 16. I/we

CANNOT imagine our lives without them ! We DID seek genetics counseling from

a dr. when we were first married. We were assured that there was a 1 in 3

chance of passing my NF to them. We were told this was a VERY OUTSIDE

chance so to go ahead and have children if we wanted to. We didn't find out

differently until a few months after our third (3rd) son had been born.

We do have the boys evaluated yearly for NF2 symptoms. So far, all are

asymptomatic. Is NF2 a big consideration when discussing having children ???

Yes, absolutely. Should it be the ONLY consideration ? NO !

I know this is a topic that has been discussed on Crew before. I DO

respect everyone's decision about having or not having children.

K.

Re: New Member Ken Shigley

>

>--- " L. Shigley "

>wrote:

> She has

>> been told that she will probably need to adopt any

>> babies she has because

>> of the risk of her child inheriting her " deaf ear. "

>

>,

>

>I am sorry about your daughter. I have NF2, and I

>apparently passed it on to my just-turned 3-year-old

>daughter. I know it must be a nightmare at times.

>

>However, my wife and I both knew the chances (50%) of

>my passing the gene on to a child, but that in no way

>affected our decision. Did we discuss it? Sure. But

>in the end, we decided that it should not be a factor.

>

>The doctors had no right to tell this to your

>daughter, unless they were discussing the aspects what

>NF2 does to the female body during pregnancy. The

>hormonal changes during pregnancy may trigger tumor

>growth, or act as a catalyst, from what I understand.

>But as far as abstaining from having children under

>the chance of passing on this disorder, that should be

>left up to your daughter and her (future) husband. My

>daughter is the absolute joy of our lives, and I

>cannot imagine deciding not to have her because she

>might get NF2.

>

>Keep up you faith. New breakthroughs are occurring

>frequently in technology and medicine. Being deaf

>isn't as bad as it was even ten years ago, much less

>100 years ago when they were locked up in sanitariums.

>

>

>We will keep you and your daughter in our prayers.

>

>

>

>__________________________________________________

>

[Guest guest]

That was beautiful and well said, . thank you for posting it. God bless

you.

K.

Re: New Member Ken Shigley

>Ken,

> is right, the drs. have NO right to tell her that - nor should

anyone

>for that matter. First off, let me just say that i never even brought this

>topic up with my daughter. I feel that when my daughter becomes a mature

>adult and the time comes she will make the right decision for herself. Its

>not up to me or the drs. All I know is that i will support her decision

>either way. a is very aware of whats going on in her life. Very

>similar to your situation - deaf on one side and just watching other side.

I

>felt i have to prepare her the best i could. She is currently taking asl

>through the school system (which after i presented the school with her

>records and got her special servcices through boces) got her 2 periods a

>week of teaching it and she is doing great. a has alot of

>determination and is a fighter. She never lets the disease stop her. I

>think that at such a young age she has adapted very well and i just felt

that

>although its rough telling them , its much better to open the communication

>and not " fear " but conquer " . I love my daughter and it really really hurts

>to watch her suffer, especially for her future, but she brings so much love

>my way that i just live for day and enjoy her unconditionally. Ken my

>daughters email address is krissy9187@.... Let your daughter write to

>her. Sincerely,

>

>

>

>

>

[Guest guest]

That was beautiful and well said, . thank you for posting it. God bless

you.

K.

Re: New Member Ken Shigley

>Ken,

> is right, the drs. have NO right to tell her that - nor should

anyone

>for that matter. First off, let me just say that i never even brought this

>topic up with my daughter. I feel that when my daughter becomes a mature

>adult and the time comes she will make the right decision for herself. Its

>not up to me or the drs. All I know is that i will support her decision

>either way. a is very aware of whats going on in her life. Very

>similar to your situation - deaf on one side and just watching other side.

I

>felt i have to prepare her the best i could. She is currently taking asl

>through the school system (which after i presented the school with her

>records and got her special servcices through boces) got her 2 periods a

>week of teaching it and she is doing great. a has alot of

>determination and is a fighter. She never lets the disease stop her. I

>think that at such a young age she has adapted very well and i just felt

that

>although its rough telling them , its much better to open the communication

>and not " fear " but conquer " . I love my daughter and it really really hurts

>to watch her suffer, especially for her future, but she brings so much love

>my way that i just live for day and enjoy her unconditionally. Ken my

>daughters email address is krissy9187@.... Let your daughter write to

>her. Sincerely,

>

>

>

>

>

[Guest guest]

That was beautiful and well said, . thank you for posting it. God bless

you.

K.

Re: New Member Ken Shigley

>Ken,

> is right, the drs. have NO right to tell her that - nor should

anyone

>for that matter. First off, let me just say that i never even brought this

>topic up with my daughter. I feel that when my daughter becomes a mature

>adult and the time comes she will make the right decision for herself. Its

>not up to me or the drs. All I know is that i will support her decision

>either way. a is very aware of whats going on in her life. Very

>similar to your situation - deaf on one side and just watching other side.

I

>felt i have to prepare her the best i could. She is currently taking asl

>through the school system (which after i presented the school with her

>records and got her special servcices through boces) got her 2 periods a

>week of teaching it and she is doing great. a has alot of

>determination and is a fighter. She never lets the disease stop her. I

>think that at such a young age she has adapted very well and i just felt

that

>although its rough telling them , its much better to open the communication

>and not " fear " but conquer " . I love my daughter and it really really hurts

>to watch her suffer, especially for her future, but she brings so much love

>my way that i just live for day and enjoy her unconditionally. Ken my

>daughters email address is krissy9187@.... Let your daughter write to

>her. Sincerely,

>

>

>

>

>

[Guest guest]

Thanks. I realize that as Anne gets older she needs to be prepared to deal

with this on her own. There has been so much other stuff going on, with

ADHD, LD, ostracism at school, etc., that up til now we have just avoided

burdening her with more bad stuff that we felt ready to load on

her. However, as she matures we need to let her take ownership of all

these things so that she can learn to fight them herself. It's tough

finding the right time to do so.

Ken

At 12:48 PM 5/12/00 -0400, you wrote:

>Ken,

> is right, the drs. have NO right to tell her that - nor should anyone

>for that matter. First off, let me just say that i never even brought this

>topic up with my daughter. I feel that when my daughter becomes a mature

>adult and the time comes she will make the right decision for herself. Its

>not up to me or the drs. All I know is that i will support her decision

>either way. a is very aware of whats going on in her life. Very

>similar to your situation - deaf on one side and just watching other side. I

>felt i have to prepare her the best i could. She is currently taking asl

>through the school system (which after i presented the school with her

>records and got her special servcices through boces) got her 2 periods a

>week of teaching it and she is doing great. a has alot of

>determination and is a fighter. She never lets the disease stop her. I

>think that at such a young age she has adapted very well and i just felt that

>although its rough telling them , its much better to open the communication

>and not " fear " but conquer " . I love my daughter and it really really hurts

>to watch her suffer, especially for her future, but she brings so much love

>my way that i just live for day and enjoy her unconditionally. Ken my

>daughters email address is krissy9187@.... Let your daughter write to

>her. Sincerely,

>

L. Shigley

SHIGLEY LAW FIRM, L.L.C.

3166 Mathieson Drive, NE

Suite 200

Atlanta, GA 30305

kshigley@...

http://AtlantaInjuryLawyer.com

Voice: (404)364-1999

Fax: (404)364-0880

[Guest guest]

I think there are more of us not in wheel chair than in, and several who have

some hearing. and thats us old fogies i'm talking about! i dont think a child

that young needs to be burdened with a lot of these " what if's " surgery has s

much changed since i had my 1st at age 14, i can onlythik things will just get

better. i truly hope ALL of our nf2 'babies' have it 100% better than we

do/did.

" L. Shigley " wrote:

> ,

> What is your daughter's condition, and how much has been explained to her

> about NF2? Since Anne's surgery in '92 we have been so focused on the

> here and now, dealing first with the deaf ear and ostracism upon her return

> to school, then with ADHD, LD and social skills issues, that the whole

> issue of NF2 and its potential repercussions has been shoved on the back

> burner. Anne complains about having to have followup MRI's every year, and

> we have told her in broad terms that it's necessary to make sure nothing

> has changed since her surgery. The pediatric neurosurgeon in Atlanta who

> reviews those MRI's and the ENT who checks her hearing both discuss things

> with us in her presence, and show her generally what's on the MRI. She has

> been told that she will probably need to adopt any babies she has because

> of the risk of her child inheriting her " deaf ear. " However, no one has

> ever explained to her that this could result in total deafness, or that she

> could wind up in a wheelchair and in pain. For us, NF2 has become the

> funnel-shaped black cloud hovering on the horizon, mostly ignored in our

> daily lives but with the sinister destructive potential.

>

> Ken

>

> At 12:51 PM 5/11/00 -0400, you wrote:

> >Welcome to the crew Ken,

> >I also have a daughter who is very close to your daughters age (12). Her

> >name is a. Maybye they can talk online if she has access to the

> >internet. You can email me privately if youd like. Again welcome,

> >from ny

> >

>

> L. Shigley

> SHIGLEY LAW FIRM, L.L.C.

> 3166 Mathieson Drive, NE

> Suite 200

> Atlanta, GA 30305

> kshigley@...

> http://AtlantaInjuryLawyer.com

> Voice: (404)364-1999

> Fax: (404)364-0880

[Guest guest]

Re: changes in surgery, Dr. MacCollin at Harvard told me around the time of

my daughter's '96 surgery that we should always seek a 2nd, 3rd & 4th

opinion before having any surgery, as most of the worst outcomes she saw in

NF2 came from overly aggressive treatment. The downside possibilities are

hard enough for parents to contemplate. It's hard to dump all that on a kid

who except for a deaf ear and some ADHD / LD issues is generally healthy and

happy.

Re: New Member Ken Shigley

I think there are more of us not in wheel chair than in, and several who

have

some hearing. and thats us old fogies i'm talking about! i dont think a

child

that young needs to be burdened with a lot of these " what if's " surgery has

s

much changed since i had my 1st at age 14, i can onlythik things will just

get

better. i truly hope ALL of our nf2 'babies' have it 100% better than we

do/did.

" L. Shigley " wrote:

> ,

> What is your daughter's condition, and how much has been explained to her

> about NF2? Since Anne's surgery in '92 we have been so focused on the

> here and now, dealing first with the deaf ear and ostracism upon her

return

> to school, then with ADHD, LD and social skills issues, that the whole

> issue of NF2 and its potential repercussions has been shoved on the back

> burner. Anne complains about having to have followup MRI's every year,

and

> we have told her in broad terms that it's necessary to make sure nothing

> has changed since her surgery. The pediatric neurosurgeon in Atlanta who

> reviews those MRI's and the ENT who checks her hearing both discuss things

> with us in her presence, and show her generally what's on the MRI. She

has

> been told that she will probably need to adopt any babies she has because

> of the risk of her child inheriting her " deaf ear. " However, no one has

> ever explained to her that this could result in total deafness, or that

she

> could wind up in a wheelchair and in pain. For us, NF2 has become the

> funnel-shaped black cloud hovering on the horizon, mostly ignored in our

> daily lives but with the sinister destructive potential.

>

> Ken

>

> At 12:51 PM 5/11/00 -0400, you wrote:

> >Welcome to the crew Ken,

> >I also have a daughter who is very close to your daughters age (12). Her

> >name is a. Maybye they can talk online if she has access to the

> >internet. You can email me privately if youd like. Again welcome,

> >from ny

> >

>

> L. Shigley

> SHIGLEY LAW FIRM, L.L.C.

> 3166 Mathieson Drive, NE

> Suite 200

> Atlanta, GA 30305

> kshigley@...

> http://AtlantaInjuryLawyer.com

> Voice: (404)364-1999

> Fax: (404)364-0880

[Guest guest]

Hi Ken,

My 15 year old son does not have NF2, at least what genetic testing says.

But we do share some things in common with the kids, is L/D, O/C/D,

also labeled as mildly retarded. He is on LOTS of medications otherwise the

behavioral problems are quite bad. He takes Ritalin, Zoloft, Depakote,

Risperdal and also a Catapres patch. With all that he is a pretty good kid.

When he hit puberty......life went out of control. We had to home school

him for a few months while we had to work with the Dr's to come up with a

balance of meds to bring him back to earth. I think the worst part is

trying to deal with the O/C/D (obsessive compulsive disorder). But al in

all we survive and he has a good life. We have a group here in Western PA,

Beaver County call Best Friend. They try to match up kids with disabilites

with other kids with no problems and do all sorts of fun stuff from

bowling, swimming, art, acting or whatever seems to pop up to do. Great

esteem builder for the kids.

TTYL and welcome to the group,

Mikey A in Pittsburgh PA

At 12:35 PM 5/10/2000 -0500, you wrote:

>

>Sent: Tuesday, May 09, 2000

>

>My name is Ken Shigley. I am a 48 year old lawyer in Atlanta. My

>daughter, who will be 13 next month, has NF2 which was diagnosed when

>she was in first grade when auditory testing revealed she was deaf in

>the right ear. The summer after second grade she had facial paralysis

>on the right side from impingement of an NF2 tumor on her facial motor

>nerve. Surgery at House Ear Institute in Los Angeles was miraculously

>successful in totally restoring facial mobility. (The prayer support was

>intense!) She has other NF2 lesions intracranially (including one on the

>auditory nerve of her good ear) and on her spinal cord. However, MRI's

>every 6 to 12 months since '96 have shown no change, and the hearing in

>her good ear remains perfect. In addition to her apparently dormant

>NF2, she does have ADHD, and deficits in central auditory processing,

>language learning, social skills and gross motor skills. However, her

>SSAT scores were good and she tests nearly two years above grade level

>in math. Next fall she will enter a long-established, well-endowed

>private school that focuses heavily on her variety of LD issues, with

>the projection by her psychologist and the school's evaluator that she

>will need to stay there two years before moving on to a mainstream high

>school for college prep. (I'm thankful we live in a city where such

>options are available, and that we can swing it.)

>While she doesn't have a lot of athletic prowess, to put in mildly,

>neither did I. She enjoys participating in a relatively non-competitive

>swim team, has completed several junior road races (not willing to try a

>10K yet), and hopes to go out for crew in another year. She enjoys

>camping, and will got on a two-week wilderness program (back country

>backpacking, rock climbing, kayaking, etc.) this summer, followed by a

>week at Space Camp. Her social skills have a great deal of room for

>improvement, but she greatly enjoys our church's youth fellowship group

>(won't miss a meeting or a retreat) and Girl Scouts (just bridged over

>from Junior to Cadette, and has set goal to earn GSA Silver Award). She

>recently flew to NYC for " Take Your Daughter to Work Day " with her aunt

>at one of the top banks, and got a lot of encouragement about attaining

>success despite ADHD and LD obstacles. This week she is printing up her

>babysitting business cards with attached refrigerator magnets to

>distribute in the neighborhood as soon as she turns 13.

>Dr. Mia MacCollin at Harvard did the genetic analysis on tissue samples

>from my daughter and my wife, who had a large benign meningioma removed

>years earlier. Her results were suggestive but not conclusive.

>

>My particular interests in NF2 include:

>* links to ADHD and LD

>* NF2 issues in puberty and beyond

>* research re: gene therapy and suppression of tumor growth

>* success stories of people with NF2, ADHD and LD challenges

>* treatment options

>* any research on lifestyle choices, e.g., diet, exercise, etc., that

>can be helpful re: NF2

>* college and career choices for kids with NF2, ADHD and LD challenges

>* reproductive issues in NF2

>

>Thank you.

>

>_____________________________________________

>NetZero - Defenders of the Free World

>Click here for FREE Internet Access and Email

>http://www.netzero.net/download/index.html

>

>

>

>

[Guest guest]

Hi Ken,

My 15 year old son does not have NF2, at least what genetic testing says.

But we do share some things in common with the kids, is L/D, O/C/D,

also labeled as mildly retarded. He is on LOTS of medications otherwise the

behavioral problems are quite bad. He takes Ritalin, Zoloft, Depakote,

Risperdal and also a Catapres patch. With all that he is a pretty good kid.

When he hit puberty......life went out of control. We had to home school

him for a few months while we had to work with the Dr's to come up with a

balance of meds to bring him back to earth. I think the worst part is

trying to deal with the O/C/D (obsessive compulsive disorder). But al in

all we survive and he has a good life. We have a group here in Western PA,

Beaver County call Best Friend. They try to match up kids with disabilites

with other kids with no problems and do all sorts of fun stuff from

bowling, swimming, art, acting or whatever seems to pop up to do. Great

esteem builder for the kids.

TTYL and welcome to the group,

Mikey A in Pittsburgh PA

At 12:35 PM 5/10/2000 -0500, you wrote:

>

>Sent: Tuesday, May 09, 2000

>

>My name is Ken Shigley. I am a 48 year old lawyer in Atlanta. My

>daughter, who will be 13 next month, has NF2 which was diagnosed when

>she was in first grade when auditory testing revealed she was deaf in

>the right ear. The summer after second grade she had facial paralysis

>on the right side from impingement of an NF2 tumor on her facial motor

>nerve. Surgery at House Ear Institute in Los Angeles was miraculously

>successful in totally restoring facial mobility. (The prayer support was

>intense!) She has other NF2 lesions intracranially (including one on the

>auditory nerve of her good ear) and on her spinal cord. However, MRI's

>every 6 to 12 months since '96 have shown no change, and the hearing in

>her good ear remains perfect. In addition to her apparently dormant

>NF2, she does have ADHD, and deficits in central auditory processing,

>language learning, social skills and gross motor skills. However, her

>SSAT scores were good and she tests nearly two years above grade level

>in math. Next fall she will enter a long-established, well-endowed

>private school that focuses heavily on her variety of LD issues, with

>the projection by her psychologist and the school's evaluator that she

>will need to stay there two years before moving on to a mainstream high

>school for college prep. (I'm thankful we live in a city where such

>options are available, and that we can swing it.)

>While she doesn't have a lot of athletic prowess, to put in mildly,

>neither did I. She enjoys participating in a relatively non-competitive

>swim team, has completed several junior road races (not willing to try a

>10K yet), and hopes to go out for crew in another year. She enjoys

>camping, and will got on a two-week wilderness program (back country

>backpacking, rock climbing, kayaking, etc.) this summer, followed by a

>week at Space Camp. Her social skills have a great deal of room for

>improvement, but she greatly enjoys our church's youth fellowship group

>(won't miss a meeting or a retreat) and Girl Scouts (just bridged over

>from Junior to Cadette, and has set goal to earn GSA Silver Award). She

>recently flew to NYC for " Take Your Daughter to Work Day " with her aunt

>at one of the top banks, and got a lot of encouragement about attaining

>success despite ADHD and LD obstacles. This week she is printing up her

>babysitting business cards with attached refrigerator magnets to

>distribute in the neighborhood as soon as she turns 13.

>Dr. Mia MacCollin at Harvard did the genetic analysis on tissue samples

>from my daughter and my wife, who had a large benign meningioma removed

>years earlier. Her results were suggestive but not conclusive.

>

>My particular interests in NF2 include:

>* links to ADHD and LD

>* NF2 issues in puberty and beyond

>* research re: gene therapy and suppression of tumor growth

>* success stories of people with NF2, ADHD and LD challenges

>* treatment options

>* any research on lifestyle choices, e.g., diet, exercise, etc., that

>can be helpful re: NF2

>* college and career choices for kids with NF2, ADHD and LD challenges

>* reproductive issues in NF2

>

>Thank you.

>

>_____________________________________________

>NetZero - Defenders of the Free World

>Click here for FREE Internet Access and Email

>http://www.netzero.net/download/index.html

>

>

>

>

[Guest guest]

How many teenagers does it take to change a light bulb?

One. The teenager firmly grasps the light bulb, and the world rotates

around him/ her.

How is changing that lightbulb different for a teenager with ADHD?

The world spins a lot faster around him / her, and the bulb falls out a

breaks, causing wailing, gnashing of teeth, general consternation, an

emergency conference with a teacher and school counselor, and perhaps an IEP

conference.

Re: New Member Ken Shigley

Hi Ken,

My 15 year old son does not have NF2, at least what genetic testing says.

But we do share some things in common with the kids, is L/D, O/C/D,

also labeled as mildly retarded. He is on LOTS of medications otherwise the

behavioral problems are quite bad. He takes Ritalin, Zoloft, Depakote,

Risperdal and also a Catapres patch. With all that he is a pretty good kid.

When he hit puberty......life went out of control. We had to home school

him for a few months while we had to work with the Dr's to come up with a

balance of meds to bring him back to earth. I think the worst part is

trying to deal with the O/C/D (obsessive compulsive disorder). But al in

all we survive and he has a good life. We have a group here in Western PA,

Beaver County call Best Friend. They try to match up kids with disabilites

with other kids with no problems and do all sorts of fun stuff from

bowling, swimming, art, acting or whatever seems to pop up to do. Great

esteem builder for the kids.

TTYL and welcome to the group,

Mikey A in Pittsburgh PA

At 12:35 PM 5/10/2000 -0500, you wrote:

>

>Sent: Tuesday, May 09, 2000

>

>My name is Ken Shigley. I am a 48 year old lawyer in Atlanta. My

>daughter, who will be 13 next month, has NF2 which was diagnosed when

>she was in first grade when auditory testing revealed she was deaf in

>the right ear. The summer after second grade she had facial paralysis

>on the right side from impingement of an NF2 tumor on her facial motor

>nerve. Surgery at House Ear Institute in Los Angeles was miraculously

>successful in totally restoring facial mobility. (The prayer support was

>intense!) She has other NF2 lesions intracranially (including one on the

>auditory nerve of her good ear) and on her spinal cord. However, MRI's

>every 6 to 12 months since '96 have shown no change, and the hearing in

>her good ear remains perfect. In addition to her apparently dormant

>NF2, she does have ADHD, and deficits in central auditory processing,

>language learning, social skills and gross motor skills. However, her

>SSAT scores were good and she tests nearly two years above grade level

>in math. Next fall she will enter a long-established, well-endowed

>private school that focuses heavily on her variety of LD issues, with

>the projection by her psychologist and the school's evaluator that she

>will need to stay there two years before moving on to a mainstream high

>school for college prep. (I'm thankful we live in a city where such

>options are available, and that we can swing it.)

>While she doesn't have a lot of athletic prowess, to put in mildly,

>neither did I. She enjoys participating in a relatively non-competitive

>swim team, has completed several junior road races (not willing to try a

>10K yet), and hopes to go out for crew in another year. She enjoys

>camping, and will got on a two-week wilderness program (back country

>backpacking, rock climbing, kayaking, etc.) this summer, followed by a

>week at Space Camp. Her social skills have a great deal of room for

>improvement, but she greatly enjoys our church's youth fellowship group

>(won't miss a meeting or a retreat) and Girl Scouts (just bridged over

>from Junior to Cadette, and has set goal to earn GSA Silver Award). She

>recently flew to NYC for " Take Your Daughter to Work Day " with her aunt

>at one of the top banks, and got a lot of encouragement about attaining

>success despite ADHD and LD obstacles. This week she is printing up her

>babysitting business cards with attached refrigerator magnets to

>distribute in the neighborhood as soon as she turns 13.

>Dr. Mia MacCollin at Harvard did the genetic analysis on tissue samples

>from my daughter and my wife, who had a large benign meningioma removed

>years earlier. Her results were suggestive but not conclusive.

>

>My particular interests in NF2 include:

>* links to ADHD and LD

>* NF2 issues in puberty and beyond

>* research re: gene therapy and suppression of tumor growth

>* success stories of people with NF2, ADHD and LD challenges

>* treatment options

>* any research on lifestyle choices, e.g., diet, exercise, etc., that

>can be helpful re: NF2

>* college and career choices for kids with NF2, ADHD and LD challenges

>* reproductive issues in NF2

>

>Thank you.

>

>_____________________________________________

>NetZero - Defenders of the Free World

>Click here for FREE Internet Access and Email

>http://www.netzero.net/download/index.html

>

>

>

>

[Guest guest]

We had one IEP last almost 4 hours. WHEW!

Mike

At 01:26 AM 5/15/2000 -0400, you wrote:

>How many teenagers does it take to change a light bulb?

>One. The teenager firmly grasps the light bulb, and the world rotates

>around him/ her.

>

>How is changing that lightbulb different for a teenager with ADHD?

>The world spins a lot faster around him / her, and the bulb falls out a

>breaks, causing wailing, gnashing of teeth, general consternation, an

>emergency conference with a teacher and school counselor, and perhaps an IEP

>conference.

>

> Re: New Member Ken Shigley

>

>

>Hi Ken,

>My 15 year old son does not have NF2, at least what genetic testing says.

>But we do share some things in common with the kids, is L/D, O/C/D,

>also labeled as mildly retarded. He is on LOTS of medications otherwise the

>behavioral problems are quite bad. He takes Ritalin, Zoloft, Depakote,

>Risperdal and also a Catapres patch. With all that he is a pretty good kid.

>When he hit puberty......life went out of control. We had to home school

>him for a few months while we had to work with the Dr's to come up with a

>balance of meds to bring him back to earth. I think the worst part is

>trying to deal with the O/C/D (obsessive compulsive disorder). But al in

>all we survive and he has a good life. We have a group here in Western PA,

>Beaver County call Best Friend. They try to match up kids with disabilites

>with other kids with no problems and do all sorts of fun stuff from

>bowling, swimming, art, acting or whatever seems to pop up to do. Great

>esteem builder for the kids.

>

>TTYL and welcome to the group,

>Mikey A in Pittsburgh PA

>

>

>

>

>At 12:35 PM 5/10/2000 -0500, you wrote:

>>

>>Sent: Tuesday, May 09, 2000

>>

>>My name is Ken Shigley. I am a 48 year old lawyer in Atlanta. My

>>daughter, who will be 13 next month, has NF2 which was diagnosed when

>>she was in first grade when auditory testing revealed she was deaf in

>>the right ear. The summer after second grade she had facial paralysis

>>on the right side from impingement of an NF2 tumor on her facial motor

>>nerve. Surgery at House Ear Institute in Los Angeles was miraculously

>>successful in totally restoring facial mobility. (The prayer support was

>>intense!) She has other NF2 lesions intracranially (including one on the

>>auditory nerve of her good ear) and on her spinal cord. However, MRI's

>>every 6 to 12 months since '96 have shown no change, and the hearing in

>>her good ear remains perfect. In addition to her apparently dormant

>>NF2, she does have ADHD, and deficits in central auditory processing,

>>language learning, social skills and gross motor skills. However, her

>>SSAT scores were good and she tests nearly two years above grade level

>>in math. Next fall she will enter a long-established, well-endowed

>>private school that focuses heavily on her variety of LD issues, with

>>the projection by her psychologist and the school's evaluator that she

>>will need to stay there two years before moving on to a mainstream high

>>school for college prep. (I'm thankful we live in a city where such

>>options are available, and that we can swing it.)

>>While she doesn't have a lot of athletic prowess, to put in mildly,

>>neither did I. She enjoys participating in a relatively non-competitive

>>swim team, has completed several junior road races (not willing to try a

>>10K yet), and hopes to go out for crew in another year. She enjoys

>>camping, and will got on a two-week wilderness program (back country

>>backpacking, rock climbing, kayaking, etc.) this summer, followed by a

>>week at Space Camp. Her social skills have a great deal of room for

>>improvement, but she greatly enjoys our church's youth fellowship group

>>(won't miss a meeting or a retreat) and Girl Scouts (just bridged over

>>from Junior to Cadette, and has set goal to earn GSA Silver Award). She

>>recently flew to NYC for " Take Your Daughter to Work Day " with her aunt

>>at one of the top banks, and got a lot of encouragement about attaining

>>success despite ADHD and LD obstacles. This week she is printing up her

>>babysitting business cards with attached refrigerator magnets to

>>distribute in the neighborhood as soon as she turns 13.

>>Dr. Mia MacCollin at Harvard did the genetic analysis on tissue samples

>>from my daughter and my wife, who had a large benign meningioma removed

>>years earlier. Her results were suggestive but not conclusive.

>>

>>My particular interests in NF2 include:

>>* links to ADHD and LD

>>* NF2 issues in puberty and beyond

>>* research re: gene therapy and suppression of tumor growth

>>* success stories of people with NF2, ADHD and LD challenges

>>* treatment options

>>* any research on lifestyle choices, e.g., diet, exercise, etc., that

>>can be helpful re: NF2

>>* college and career choices for kids with NF2, ADHD and LD challenges

>>* reproductive issues in NF2

>>

>>Thank you.

>>

>>_____________________________________________

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