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!!!
Haven't forgotten abt you. Just need time to review some things
& have things going on here also. Can you call for more copies
of blood work for your file. Alot is missing & I know what you
have, but would like you to ask for more. Did they do a CBC & Chempanel. Hard to believe that wasn't ordered. Haven't come up
w/ much because too many things depend on what's a pos/neg.
Won't they give this to you? Lets hope for more. Talk soon.
THANKS for all your help and we had come to the conclusion that we are going to wait till Oct to see what happens his X-Ray came back fine and he has no spots or frickling what so ever and he has no spots or anything around his iris... So I think NF1 is just something that they are grasping at but we'll see in OCT. Thank you once again and look forward to your post around then may god bless you for all your help you are a great sorce of help for other people. From Divera
Div: Well, I tried researching all variables since I lack info
needed to narrow dwn. Used old/new books & Net. Hard to explain
but still goes back to NF1 w/ PP causing slight confusion. 1st,
where is axillary freckling? Skin/eye/elswhere? If skin & more
than 5, it's also called Crowe. It's from PP. Referred to also
as Cafe au Lait spots & points to NF1. If specks 'freckling in
iris of eye', it's from PP. Hamartoma is a gathering of benign
tissue that may show up near Hypothalamus.If small, no symptoms.
If larger & compresses nearby tissue, it will cause seizures,
emotional disturbances, rage. It can also slowly intertwine
around optic nerve. May explain glioma change & specks in iris.
You say he's just a normal kid in actions so it's still do to
PP w/ no compression & no need for surgery. The Hypothalamus is
autonomic part of our nervous system. We can't control it. It
effects: eat/sleep/thirst/BP/body temp/love/emotions. Sounds
like he has normal functions like a typical kid. If he had NF2,
signs of hearing loss or vertigo (balance) is present. These
are operated by the 8th cranial nerve path. Other problems are
usually present but he doesn't have them. Sarcoiditis: generally
means a derangement of 'normal' tissue. If pneumonitis/fungal/
bacteria is ruled out, they call it that. It can be outside on
skin & visible for Dr's to see & cause would be considered PP.
If it's near eye or glioma, it's a growth of erupted tissue.
If ACE appears in CSF it can be from this. If 'very high ACE'
in CSF, then this can be meningeal irritation causing inflamm.
& would also show up on MRI. He can have pos. ACE in-range. He
has no hd-aches/dizzy/severe hd-pressure. The marker you're
asking abt may be that. Pos. may be from overall condition. An
LP cannot confirm. Some are born w/ this condition. I would ask
if science has come up w/ gene testing if you have other kids.
I wouldn't want to know since it wouldn't be a sure thing. Love
is what matters regardless what genes are floating around. I
cross-referenced alot & I think you can only wait to Oct. & ask
for ALL copies going back to early age bloodlabs, etc. & keep
a file. Compare over the tests for yourself, what has changed?
Dr's are right to wait for surgeries/pathology. Speak to the
Opthalmalogist abt his iris. I can't Dx but I'm pretty sure I
have ck'd the possibilties well. Might talk to a child
psychologist abt when/how to discuss this w/ him. He will need
to know what to alert you w/ if any unusual changes. I'll ck.
back Oct/Nov. At 9 I had an earache & thought that putting a
cotton ball in ear would fix it w/o having mom take me to Dr. for shots. I saw grandma do it! The ball fell in deep & I still had to go after a week! Kids copy things or avoid speaking up.
This little guy has mom driving the big tank. Take care of
yourself to fight later if needed. I will always remember that
name, Jake. I'll be thinking of him come Oct. Bless you all.
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