New Member

Report post · November 15, 2000

Rosemary,

Hi. It's nice to hear from someone else who has a child with NF2. Up until

two months ago I had never heard of NF. We did ask Nick's neurosurgeon how

long he thought he had the tumor in his neck. He told us probably a long

time since they are supposed to be slow growing tumors. How long is a long

time in a six year old? He said the tumor in Nick's neck was probably there

as long as the tumor in his eye. We found out Nick had something wrong with

his eye when he was six months old so either he was born with it or it

happened some time before he was six months old.

I think part of the reason the geneticist at the NF clinic told us to learn

sign language was because she was just trying to think of things to tell us.

She really didn't tell me much more than I had already learned via the

internet. I wonder sometimes how much the doctors know about NF2. It was

kind of hard to hear the doctor say we could need sign language. I am still

in the process of accepting that Nick has NF2. I was looking out the window

at the hospital NF2 clinic while we were waiting to see the doctor and

wishing we weren't there. Will things ever get back to normal?

It is difficult trying to decide how much to tell Nick about his having NF2.

My mother-in-law said she didn't think we should tell him much. That's hard

to do when he hears us talking with doctors and other people about it. I

think he does need to know he has it. I wouldn't not want to tell him about

it like it was something to be ashamed about. I don't want to get into a

lot of details about it with him either. He's only six years old. He

asked me the other night if the tumor that was taken out of his neck could

grow back. I told him it could, but we didn't think it would. When he

first found out he had a tumor in his neck he couldn't understand it. He

thought everybody should have a tumor in their neck. He has asked why we

need to learn sign language, too. So we are giving him some information,

but not too much. What have you told your son?

Take care,

New member

> welcome to the crew.

> I have a7 year old son, youngest of three, who is also a new genetic

> alteration.

> We have a very similar story. Diagnosed around the same time, and the

> geneticists also said presumptive Nf2 and a specialist at an Nf clinic

said

> via email " almost certain Nf2 " .

> Louis has eye symptoms as well as two meningiomas (one excised in August

and

> second to be removed on Dec.5).They are/were huge!!!!

>

> I'm wondering if your surgeons passed any comment on how long Nick's

tumors

> had been growing??

>

> Our first clue to any of this was Louis having headaches over a period of

> weeks back in July. Apart from this, louis is a very exuberant,

mischievous,

> energetic and gorgeous ratbag......

>

> Your drs recommendation for the family to learn sign language infuriates

> me....whilst i think learning sign language should be taught in all

schools

> and in itself is a very valuable thing, in this context, I consider it

to

> be a pathetic, premature admission of incompetence. How dare they!!!

> This would only make sense to me if Nick already had advanced An's for

which

> surgery seemed extremely complicated.

>

> Every one needs hope, parents in particular.

> Whilst I'm praying for a cure and a stay on further complications, I'm

also

> actively searching and ASKING for it far and wide.

>

> I believe this is a very curable disorder, but I think like everything in

> life, if you don't work towards to it, it isn't going to fall into your

> lap.

> Sorry, I'm a little strident this morning, i can be quite nice, I

> promise.....

> feel free to email me privately, i guess i would like to chat about how

much

> to communicate to the children.....they are so young, and it is a

different

> situation to children who are familiar with Nf2 from their own family.

> rosemary.

>

Report post · November 15, 2000