Children with NF2

[Guest guest]

Lakeman- diagnosed age 12

Children with NF2

In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

thank you. Marie

Children with NF2

In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

Jake Livermore- diagnosed age 11

Marie Drew wrote:

thank you. Marie

Children with NF2

In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

Thank you. Marie

Children with NF2

In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

ITS OUT DATED RESEARCH IF YOU ask me. they are behind about 20 years

as usual. I think in not too far past people were not " diagnosed " with

nf2 as pre teens or younger because they simply did not have the know

how, mri's, dna tests, or information to diagnose. I am certain I had

a Cspine tumor that started around age 8 or 9, maybe before. I was

born blind in right eye (its improved over yrs with therapy but itsnf2

related) I wasnt diagnosed til 21! Then I diagnosed myself by looking

in medical books! sheesh. not kidding.

In NF2_Crew , " Marie Drew " wrote:

> In the brochures, educational material, etc doctors are taught NF2

develops in " late teens, early adulthood " . From what I see on this

Crew, I do not think that is correct today, and I would like to write

a few doctors (play Doberman) and ask them about getting it changed.

To do that, I am going to give them the following list of " kids " that

I know; if there is anyone with a child that I do not have listed,

please let me know so I can add them to the list.

> Reagan-Age 3 ()

> Adam - diagnosis age? (Barbara)

> - New York

> Garreth

> Getz

> T. Getz (mind blank, can't think of her first name)

> - I need name of your grandson

> P thought there are others I can't remember?

> Marie

[Guest guest]

Hi Marie Nick age 9 , Springfield , Il.

Grandson

Diagnosis age 5 ( Has skin tags)

Joyce M.

If you have a first degree relative with nf2.

And the doctors are wise enough to do a mri early

not wait until puberty.

They would find out those white spots on the mri's

are future tumors.

They show up way before puberty.

Both my children were diagnosised before puberty.

Angie had (skin tags) very unexpained ones

Mike had a couple of very small caif-au- lait .

They wanted to do another mri on my daughter

(With 3x gatolium ) not heard on back then.

And hadn't done on on my son yet . They said he has

no signs of nf2.

So i said i will give you permission to do the mri on

my daughter if you do one on my son also.

So they did it both children. ages 7 and 10

Need less to say both had nf2.

Between the two of them they had seventeen white

spots on the mri brain and spinal cord.

All twenty years down the line they all were tumors.

The first tumor that showed up doing damage was

brachial plexus tumor with my daughters arm wasting away.

Age 12

And she has had a lazy eye all her life.

There is a couple of papers written up on this very

good ones. ( Almost 25 years ago).

I will go looking for you.

-- Children with NF2

In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

I can answer that as far as Lee is concerned Cindy, he would not be alive today if we had not known about my NF2. ( He had his first surgery at the age of 5 and had a tumor "larger than a grapefruit" on his right optic nerve removed. That is what his neurologist told us in terms of size, I was pretty ignorant about all this stuff back then. He has always been a big boy, but can you imagine a tumor that size in a 5 year old's head?? He has had a couple of life-threatening surgeries since also.

Lee ...Donna Hutyra's son was diagnosed when he was 5 years old, and had his first surgery just weeks afterwards.

I wonder how many of these kids wudbe diagnosed today if the parents

not have.

[Guest guest]

I can answer that as far as Lee is concerned Cindy, he would not be alive today if we had not known about my NF2. ( He had his first surgery at the age of 5 and had a tumor "larger than a grapefruit" on his right optic nerve removed. That is what his neurologist told us in terms of size, I was pretty ignorant about all this stuff back then. He has always been a big boy, but can you imagine a tumor that size in a 5 year old's head?? He has had a couple of life-threatening surgeries since also.

Lee ...Donna Hutyra's son was diagnosed when he was 5 years old, and had his first surgery just weeks afterwards.

I wonder how many of these kids wudbe diagnosed today if the parents

not have.

[Guest guest]

I can answer that as far as Lee is concerned Cindy, he would not be alive today if we had not known about my NF2. ( He had his first surgery at the age of 5 and had a tumor "larger than a grapefruit" on his right optic nerve removed. That is what his neurologist told us in terms of size, I was pretty ignorant about all this stuff back then. He has always been a big boy, but can you imagine a tumor that size in a 5 year old's head?? He has had a couple of life-threatening surgeries since also.

Lee ...Donna Hutyra's son was diagnosed when he was 5 years old, and had his first surgery just weeks afterwards.

I wonder how many of these kids wudbe diagnosed today if the parents

not have.

[Guest guest]

( H.'s grandson & my nephew)age 9

Greer ( H.'s grandson & my nephew)age 13(?)

Greer (Catherin's grandaughter & my niece)age 17(?)

Jake Livermore- diagnosed age 11

Lakeman- diagnosed age 12

----- Original Message -----

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

I wonder how many of these kids wudbe diagnosed today if the parents

not have.

In NF2_Crew , " Marcus " wrote:

>

>

> I saw evidence of NF on them both the moment they were both born.

> Marcus

> Children with NF2

>

>

> In the brochures, educational material, etc doctors are taught NF2

develops in " late teens, early adulthood " . From what I see on this

Crew, I do not think that is correct today, and I would like to write

a few doctors (play Doberman) and ask them about getting it changed.

To do that, I am going to give them the following list of " kids " that

I know; if there is anyone with a child that I do not have listed,

please let me know so I can add them to the list.

> Reagan-Age 3 ()

> Adam - diagnosis age? (Barbara)

> - New York

> Garreth

> Getz

> T. Getz (mind blank, can't think of her first name)

> - I need name of your grandson

> P thought there are others I can't remember?

> Marie

>

>

[Guest guest]

My Daughter, Hannah Claire, had a cafe au lait patch measured by the doctor when she was 5. It had been there for a few years. Brackmann thinks we should be having her mri now but we have chosen not to until she is much older.

So far, my oldest daughter, Hilarry Cassandra, has no signs.

Cindy, I agree with you. I had symptoms before being diagnosed. I thought everyone heard beeps and buzzing in there ears. I also thought I was big clutz rather than having balance problems and my cataract was written off to being just a "birth defect".

Blessings,

"Dance as if no one were watching:sing as if no one were listening,and live every day as if it wereyour last." - Irish Proverb

Children with NF2

In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

you know I was the only kid in elementary who could not climb a rope, or

do other things they make you do in PE. I was odd. Also had a few

dizzy spells (like a seizure) in 4th grade, but I didnt tell my mom!! I

was too scared too. and itnever happened again. Also I remember always

being tired and would fall asleep the minurte home from school. my sister

thought I was crazy, i should be out playing, running, climbing trees,

but I slept

Cindy, not so sleepy anymore, usualkly

& Larry Orr wrote:

My

Daughter, Hannah Claire, had a cafe au lait patch measured by the doctor

when she was 5. It had been there for a few years. Brackmann

thinks we should be having her mri now but we have chosen not to until

she is much older. So

far, my oldest daughter, Hilarry Cassandra, has no signs. Cindy,

I agree with you. I had symptoms before being diagnosed.

I thought everyone heard beeps and buzzing in there ears. I also

thought I was big clutz rather than having balance problems and my cataract

was written off to being just a "birth defect". Blessings,"Dance

as if no one were watching:

sing as if no one were listening,

and live every day as if it were

your last." - Irish Proverb

Children with

NF2

In the brochures, educational material, etc doctors are taught NF2

develops in "late teens, early adulthood". From what I see on this

Crew, I do not think that is correct today, and I would like to write a

few doctors (play Doberman) and ask them about getting it changed.

To do that, I am going to give them the following list of "kids" that I

know; if there is anyone with a child that I do not have listed, please

let me know so I can add them to the list.Reagan-Age 3 ()Adam - diagnosis

age? (Barbara) - New YorkGarreth GetzT. Getz (mind blank,

can't think of her first name) - I need name of your grandsonP

thought there are others I can't remember?Marie

[Guest guest]

hi Joyce, when you say white spots, can you be more specific. what exactly did they call them in mri report..... areas of high signal intensity, UBO’s (unidentified bright objects) ...R>

Hi Marie Nick age 9 , Springfield , Il.

Grandson

Diagnosis age 5 ( Has skin tags)

Joyce M.

If you have a first degree relative with nf2.

And the doctors are wise enough to do a mri early

not wait until puberty.

They would find out those white spots on the mri's

are future tumors.

They show up way before puberty.

Both my children were diagnosised before puberty.

Angie had (skin tags) very unexpained ones

Mike had a couple of very small caif-au- lait .

They wanted to do another mri on my daughter

(With 3x gatolium ) not heard on back then.

And hadn't done on on my son yet . They said he has

no signs of nf2.

So i said i will give you permission to do the mri on

my daughter if you do one on my son also.

So they did it both children. ages 7 and 10

Need less to say both had nf2.

Between the two of them they had seventeen white

spots on the mri brain and spinal cord.

All twenty years down the line they all were tumors.

The first tumor that showed up doing damage was

brachial plexus tumor with my daughters arm wasting away.

Age 12

And she has had a lazy eye all her life.

There is a couple of papers written up on this very

good ones. ( Almost 25 years ago).

I will go looking for you.

-- Children with NF2

In the brochures, educational material, etc doctors are taught NF2 develops in " late teens, early adulthood " . From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of " kids " that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

Marie

We have a new Aussie NF2-er. She's isn't part of the Crew and her mother works and doesn't have the time to be at the computer much and as Chrisso is only 14. It would be a daunting experience for her to hear how serious NF2 can be. She keeps in regular contact with us Aussies NF2-ers and funnily enough sounds very bright and well adjusted even with this devastating news of NF2.

So I'll give you some of her info, if that's OK for you to add to the list if you want to.

(Chrisso) is 14 yrs of age just been diagnosed with nf2 on 7/12/02, and operated on 16/1/03 and has a brother 13 yrs of age. No genetic testing has been done on either Chrisso or her brother as yet. Chrisso lost her hearing in her left ear, I haven't inquired about any facial nerve damage. Both AN's were/are over 5cm.

Chrisso said she noticed deafness and it wasn't until the tinnitus, that she realised there was something serious happening. It's anyone's guess how long they have been there, but I would suggest some time.

In my own sons case... not really a child. But he was diagnosed at 29 and the Prof suggested, because of it's size, that his L-AN could have been growing for some 15 years.

Just in case you want to include them, Marie.

ine

Re: Children with NF2

Thank you. Marie

[Guest guest]

That is interesting, your statement about the "white spots" - correct me if I am wrong, but wasn't that the case with ?? Her grandchild, who got mixed diagnoses, at about age 7, but had tumor removal, age 10??

Marie

Children with NF2

In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

Wow, thank you. Marie

Re: Children with NF2

MarieI was diagnosed at age 6 months, and first surgery at age 9.Olivia

[Guest guest]

Thanks Sara, I knew the generalities, but I needed those specifics. marie

Re: Children with NF2

( H.'s grandson & my nephew)age 9

Greer ( H.'s grandson & my nephew)age 13(?)

Greer (Catherin's grandaughter & my niece)age 17(?)

Jake Livermore- diagnosed age 11

Lakeman- diagnosed age 12

----- Original Message -----

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

Wow, you know what I am getting from this though? Kids who are second generation are getting picked up early, because we know what to look for. However, there are some first generation, such as Garrett, Adam, . Still going to pass this info on. Marie

Children with NF2

In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

That's the interesting question!! How many FIRST GENERATION or spontaneous

kids under 15 have been diagnosed? marie

Children with NF2

> >

> >

> > In the brochures, educational material, etc doctors are taught NF2

> develops in " late teens, early adulthood " . From what I see on this

> Crew, I do not think that is correct today, and I would like to write

> a few doctors (play Doberman) and ask them about getting it changed.

> To do that, I am going to give them the following list of " kids " that

> I know; if there is anyone with a child that I do not have listed,

> please let me know so I can add them to the list.

> > Reagan-Age 3 ()

> > Adam - diagnosis age? (Barbara)

> > - New York

> > Garreth

> > Getz

> > T. Getz (mind blank, can't think of her first name)

> > - I need name of your grandson

> > P thought there are others I can't remember?

> > Marie

> >

> >

[Guest guest]

Sara. do you remember what they called 's??

I just remember "white spots". marie

Re: Children with NF2

hi Joyce, when you say white spots, can you be more specific. what exactly did they call them in mri report..... areas of high signal intensity, UBO’s (unidentified bright objects) ...R>Hi Marie Nick age 9 , Springfield , Il. Grandson Diagnosis age 5 ( Has skin tags) Joyce M. If you have a first degree relative with nf2. And the doctors are wise enough to do a mri early not wait until puberty. They would find out those white spots on the mri's are future tumors. They show up way before puberty. Both my children were diagnosised before puberty. Angie had (skin tags) very unexpained ones Mike had a couple of very small caif-au- lait . They wanted to do another mri on my daughter (With 3x gatolium ) not heard on back then. And hadn't done on on my son yet . They said he has no signs of nf2. So i said i will give you permission to do the mri on my daughter if you do one on my son also. So they did it both children. ages 7 and 10 Need less to say both had nf2. Between the two of them they had seventeen white spots on the mri brain and spinal cord. All twenty years down the line they all were tumors. The first tumor that showed up doing damage was brachial plexus tumor with my daughters arm wasting away. Age 12 And she has had a lazy eye all her life. There is a couple of papers written up on this very good ones. ( Almost 25 years ago). I will go looking for you. -------Original Message-------From: NF2_Crew Date: Thursday, February 20, 2003 08:45:31To: nf2_Crew Subject: Children with NF2 In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.Reagan-Age 3 ()Adam - diagnosis age? (Barbara) - New YorkGarreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandsonP thought there are others I can't remember?Marie

[Guest guest]

yeh, I am hanging on this one!!!!!l

Louis has many of them( fortunately stable) and I have asked, and asked and asked,,,,will these be called tumors later when they have made up their minds and become more defined,.....sometimes they also say, possible harmatomas, or foci of high signal intensity, and in NF1 they are called UBO’s , or areas of aberrant myelination(whereas in NF2 ,I think it is more a case of areas o aberrant gliosis, which can go the tumor route..)

Sara. do you remember what they called 's??

I just remember " white spots " . marie

Children with NF2

In the brochures, educational material, etc doctors are taught NF2 develops in " late teens, early adulthood " . From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of " kids " that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.

Reagan-Age 3 ()

Adam - diagnosis age? (Barbara)

- New York

Garreth

Getz

T. Getz (mind blank, can't think of her first name)

- I need name of your grandson

P thought there are others I can't remember?

Marie

[Guest guest]

Rosemary Shanes first CT (before he was diagnosed) showed foci i can't remember where it was but i do remember the name, his last MRI showed a large number of white spots on the spine and a few in the brain. Go figure...

----- Original Message -----

From: Rosemary Lee

yeh, I am hanging on this one!!!!!lLouis has many of them( fortunately stable) and I have asked, and asked and asked,,,,will these be called tumors later when they have made up their minds and become more defined,.....sometimes they also say, possible harmatomas, or foci of high signal intensity, and in NF1 they are called UBO’s , or areas of aberrant myelination(whereas in NF2 ,I think it is more a case of areas o aberrant gliosis, which can go the tumor route..)

[Guest guest]

I have no doubt a lot more would have been if the Doctors KNEW what they

were looking at in these kids, Shanes symptoms were there from birth, blind

lazy eye, seizures, drop foot, balance, deminished hearing etc but were

passed off as all sorts of different things from sinus probs to lack of

oxygen during the birth process.

Pretty pathetic really when an optomitrist gets sus and passes him on to a

neuro because he sees an enlarged optic nerve.

His drop foot was operated on by what is supposed to be one of the best

Neuro's in OZ to remove tissue strangling a nerve? that was at age 15, but

all he was interested in was telling Shane to play more sport and his leg

shouldn't stop him.

----- Original Message -----

> That's the interesting question!! How many FIRST GENERATION or

spontaneous

> kids under 15 have been diagnosed? marie

[Guest guest]

yes well in my humble opinion I think these are potentially tumors in the making, or ‘wannabe tumors’, and it depends on whether this aberrant gliosis/ myelination then takes the next step towards tumorigenesis.

Rosemary Shanes first CT (before he was diagnosed) showed foci i can't remember where it was but i do remember the name, his last MRI showed a large number of white spots on the spine and a few in the brain. Go figure...

----- Original Message -----

yeh, I am hanging on this one!!!!!l

Louis has many of them( fortunately stable) and I have asked, and asked and asked,,,,will these be called tumors later when they have made up their minds and become more defined,.....sometimes they also say, possible harmatomas, or foci of high signal intensity, and in NF1 they are called UBO’s , or areas of aberrant myelination(whereas in NF2 ,I think it is more a case of areas o aberrant gliosis, which can go the tumor route..)