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optic nerve glioma
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optic nerve glioma

Hi Demiguise

Just Divera here lost your post on the site but I did answer your question that you posted you will just have to scroll down till you get to  Divera (OPTIC NERVE GLIOMA) if that was who you were talking about in an other comment you made you said that you were helping some one with a rare eye condion.... I assume it was me and if it was not sorry...  I do look forward to your post, you are very help Man thank you.
your friend
Divera from NZ
Tags: optic, glioma
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Avatar_n_tn
Well hello Mom in NZ. Glad you wrote again. That glitch really
bothered me. I have a soft spot when it comes to kids & illness.
Also for moms w/ a full plate! I wrote & shortly after it went
into space. Don't know if you read it in time. I re-capped info
below & found some of my scribbles. He's 9 but looks 12 & I'm
guessing has developed as such + labs pointed to precocious-
puberty. Is he on LHRH? I'm in US so may be different. The
tumor in hypothalmus is probably the culprit for PP. That's a
separate problem for now. I mentioned I was familiar w/ this to
certain extent via friend. I have to go back to old notes & a
1960's book I use for reference. That's when Dr's listened/wrote
findings by hands-on & really thinking. Then I compare to new
books & some net search. No one reads books anymore! Tech. is
great but we don't retain. Even med students say they forget
ALOT once they get degree. I'll be getting back to you off/on
but for now, not sure the LP would show this type tumor. Hope
you have copies. Diseases give off oligo bands that show up on
test by light. Recently told someone abt the bands in the
gamma site. You can have MS w/ or w/o bands in LP. This test
is just a tool. Colon cancer will show bands if LP is done for
other reasons & then they test further, = surgery. I believe a
certain hormone must be present & I'm not a great chemist. That
would be someone to ask. My guess is 'not show'. Mri can do
pretty gd. on signal feedback for benign vs. cancer. I don't
know what NZ uses. A 1 1/2 ton is considered 'big bertha' here.
US term. There is a unique CT-26? scan that can really see
things. I'll get back w/ that info. If no glasses/hdaches/visual
problems, they are leaning to NF1 (unilateral) not NF2. This can
be genetic also. Any family w/ any input at all?  By the way,
please print this info in case glitch makes appearance. Any Hd-
prssr mentioned/severe papilledema/nystagmus of eye? If he's
just plain healthy except for PP, they are waiting for a sign.
I think you said 2x2mm in one yr growth. It's frightening for
you, but I think the 6mo. fol/ups are the best. Have to go for
now but will ck. back for any other input to think about. Sorry
but have promised to meet someone. Did anyone mention chiasm?
I'll ck. back later. Glad you wrote.

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Avatar_n_tn
Hi there thanks for taking the time to get back to me this is all the information that I have this is up to date I KNOW ITS NOT ALOT.

Diagnosis: Central precocious puberty associated with hypothalamic region lesion including right optic nerve

Differential diagnoses considered include:
- hamartoma, glioma (possible neurofibromatosis)(they only think this cause of the Glioma on his eye the eye doctors did'nt seem so, nothing eles to indercate this at all), sarcoidosis (had chest x-ray on wednesday).

Medication: Lucrin 3.75 mg IM monthly

Follow up: 1. For chest x-ray locally in Timaru
2. October 2006 with repeat MRI brain, serum ACEI level and Ophthalmology review

Further to my earlier correspondence, Jacob was admitted recently to the Paediatric ward to allow further assessment of his condition and in particular to exclude cerebral germinoma.   Examination was unchanged from previously with no evidence of axillary freckling, a cutaneous marker of neurofibromatosis type 1.

Investigations during his admission included normal biochemistry and full blood count.   Serum  tumour  markers  were  both  negative with &#61538; HCG <5 IU/L,  alpha  feta protein <5
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Avatar_n_tn
Not sure how any mom could be accepting of this. Lot's for me to
review. My ink-printer just ran out so I need to play w/ to do a
print out. Will be interesting to see what Dr. Sullivan's input
is. Looks like NZ may use different terms on a few things I just read but can figure it out. Does sound like NF1 and also
that Dr's are watching him for changes. Fol-up in Oct. sounds
far away but they need to space it for comparison. Do you know
if Dr's definetly said 'no' to cerebral germinoma? Sounds vague
or just written different maybe.  I'll write ya' back in a few days. I send alittle prayer from the USA. Talk later.
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Avatar_n_tn
Hi there sounds like you are have a bit of trouble with this other person sorry to hear that!!!

Can't give you any more information as I don't have anymore sorry.  

We found out about the tumours because I thought that Jake was very tall at a very young age he went of the pluncket book by the time he was three, and he started developing and started to get a deep voice, so I knew something was not right...
Jake is not ill in any way mind you the last day or so he has been having sore eyes and now and then started to have headachs...  Jake is a normal 9 year old how like to play soccer and hes good at it, plays with his mates yacks to girls, plays his PS2 you know all that sort of  stuff, ok talk later sorry for the lack of info but thats as good as it gets this is how  good the doctors are here!!!

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Avatar_n_tn
Will get back to you later, but 1st need to ask you a favor.
I lost your post before do to my little 'board stalker' that
got me deleted from a slip in rules even though it's done alot.
You need to print everything out since my printer is down. You
posted your name. It's no-no. I slipped once in 20+ yrs. this
person didn't seem to have a conscience. All important info was lost to everyone. Was a mean thoughtless act but I made contact
again w/ you reposting. I believe they will do it again since
my links are added to yours & 'you'll' get the delete. Print or get someone to do it. Just in case. Meanwhile, is there anymore
labs/bloodwk you have or can get. There's alot missing. I'm
looking for inflammatory trigger & ACE helps but SED/CRP done?
Intracranial pressure was probably helped w/ LP. Not all tumors
release cells to detect much. Sons is benign & repeat later may
show different picture. Only a tool though. You can have MS &
no markers in LP. They found no malignant cells in CSF so that's very good. Tumors are stable. Will talk more later but
want this to get to you before my 'friend' shows. You never said how this started/found & does he act ill in anyway? Just a
normal acting boy w/ friends & sports? Talk later.
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Avatar_n_tn
Thank you, all I can say about the cerebral germinoma is that the LP-Lumber Punture came back clear on this but as I did post that was my biggest concern as I have read that LPs do not pick up the markers of brain tumors so I really don't know like I say they are very vauge on anything really but to go onto another subject NF1 they really don't have anything to go on expect the optic nerve glioma and the eye Man Ken Tarr said he really did'nt think that he had it but I really don't know I was talking to a Lady from the USA brain foundation a doctor I think who said she thought that they should of done a HOLE body MRI to see if he had any other tumors so I will present this to his doctors I AM SURE they will be very angery with me but as a MUM I have to do what I have to DO to get anything done...

Thank you for your prayers we are firm christain and believe the LORD JESUS can heal him but we also believe that we may also have to look at the medical side as well it just soooooooooo hard to wait and see as we have been doing just that for the past 3 and a half years sorry for going on..  Chat later and my real name is MOANA ok..  Have a great day and look forward to your reply I appricate the time that you are putting in for me thank you and may GOD THE LORD JESUS CHRIST truly bless you for the wounderful imput that you are putting into people lives by helping them thanks...
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Avatar_n_tn
Hi there thought I would post again since I've not heard from you in a while things alright it there sounds like you are have a bit of trouble with this other person sorry to hear that!!!

Can't give you any more information as I don't have anymore sorry.

We found out about the tumours because I thought that Jake was very tall at a very young age he went of the pluncket book by the time he was three, and he started developing and started to get a deep voice, so I knew something was not right...
Jake is not ill in any way mind you the last day or so he has been having sore eyes and now and then started to have headachs... Jake is a normal 9 year old how like to play soccer and hes good at it, plays with his mates yacks to girls, plays his PS2 you know all that sort of stuff, ok talk later sorry for the lack of info but thats as good as it gets this is how good the doctors are here!!!

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