My Son Jake

[Guest guest]

Hello to all out there

My Name is Moana and I am Mum to Jake who is 9 I am just trying to

get some sort of info for my son I will start at the top as there is

just so much to say. Jake was diagnosised at 6 (late 2003) with

haveing hypothalamic region lesion which they have called a

Hamartoma. In 2005 they found a spot on his right optical nerve

which they said was small and not to worry about it.. This year 2006

they have decided that the right optic nerve is probably an glioma as

it has grown 2mmx1mm in a year and to top it of they have found a

small tumour in his brain tissue can't tell you where as the doctors

are not so good at giving mare parents information...

The only thing that is really wrong with Jake

is that he has Central Precocious Puberty which he started very

young... The doctors have done plenty of test on Jake as he is what

you calla RARE case we live in New Zealand.. Jake is on medication

for his Precocious Puberty and all is going fine in that area. Jake

has in the last month had 3 headaches and 2 lots of sore eyes which

have been bad as he was crying with this.... Jakes Paediatri

Neuroloist raised the diagnosis of neuosarcidosis as a very remote

possibility. Jake did the blood test and had a plasma ACEI level, a

marker of neurosarcoidosis showed a level of 105 IU/L (12-52). They

suggested doing a chest X-Ray which has come back clear. So we

thought all was fine but Jakes Paediatric Endocrinologist has asked

for the blood test to be done again as the levels are to high for a

child.

My question how have you people been diagnosed?

Do these systoms sound the same as what you have?

What is the out come for my son if he has it?

Sorry I sound like a crazy woman but this has been going on for

nearly 3 years now and I am just so tired of fighting with doctors

for so long now all they keep saying is they just don't really know

what is wrong with Jake and I am so sick and tired of hearing " we

will keep doing 6 monthly MRI's " to keep an eye on things it's the

old lets wait and see that is upsetting as what if they have it wrong

again what will happen next he is on no medication expect a monthly

injection of Lucrin for his Precocious Puberty. Iam sick of being

treated like a nobody it is just so frustrating...

Thanks for listening any info would be great

Moana Waldron (Mum to Jake 9, Bethany 7 and Abigail 1)