RE: my son Jake

[Guest guest]

Thanks Marla

for the encouragement. I can read between the lines but it's not that easy to get a second opinion here in NZ we only have 4 major hospitals here in NZ and to get to see the other ones we would need to get a referral from the doctors we are seeing.. But if we have know joy in October we will have to see about going else where. Thanks for getting back to me

Moana

Re: Re: My Son Jake

I just thought I would let you know that he was not crying out of Frustration but more to the fact that his eyes were really sore.

Moana,When Jakes eyes get sore-- is he light sensitive? Or is it that his eyes are sore from crying.The reason I ask is that when we cry-- our eyes actually become very dry from too much tear production getting the normal tears that lubricate our eyes out of balance. You may find that by having him use Artificial Tears (Tears Naturale, Hypotears, etc)--STAY AWAY FROM VISINE!-- THAT HIS eye pain will settle down. He'll argue this point with you-- and that's ok. But it is the truth that crying dries the eyes out. He may also be experiencing inflammation of the lacrimal tear ducts that are under the eyelids-- and that too would make his eyes very dry and sensitive.The other part is that if Jake is light sensitive-- he may have Iritis (inflammation of the iris) or Uveitis (inflammation of the spiderweb like meshwork that helps the iris open and close to lights) and this is a regular problem with inflammatory diseases--sarcoidosis, Neurosarc, arthritis and Sjorgens syndrome. When the iris gets inflammed, your eyes can't dilate to block out the bright lights- and this is very painful--and serious --as it can lead to glaucoma. (Yep, kids can get glaucoma also).Get him in to an Ophthalmologist-- MD for the eyes--and have his eyes checked. His future vision may depend on it. Also, if he has active sarcoidosis-- Lungs are the first place it shows up in 80% of the people, eyes are the second place.My history with this disease is that it was my Ophthalmologist that caught my symptoms- and he figured it was a systemic form of arthritis-- long shot was that it would be sarcoidosis. I won on the longshot.Fortunately, I was working for this MD-- and he truly has saved my vision. It was under his care and employment that I became a Certified Ophthalmic Assistant-- (I've let the certification go) but I sure learned alot about eyes-- and that you don't mess with eye pain of any kind.Your Jake sounds like my son-- who's now 23-- but isn't it a blast! Their personalities never cease to amaze us! Blessings to you,TracieNS Co-owner/moderator

[Guest guest]

Thanks Marla

for the encouragement. I can read between the lines but it's not that easy to get a second opinion here in NZ we only have 4 major hospitals here in NZ and to get to see the other ones we would need to get a referral from the doctors we are seeing.. But if we have know joy in October we will have to see about going else where. Thanks for getting back to me

Moana

Re: Re: My Son Jake

I just thought I would let you know that he was not crying out of Frustration but more to the fact that his eyes were really sore.

Moana,When Jakes eyes get sore-- is he light sensitive? Or is it that his eyes are sore from crying.The reason I ask is that when we cry-- our eyes actually become very dry from too much tear production getting the normal tears that lubricate our eyes out of balance. You may find that by having him use Artificial Tears (Tears Naturale, Hypotears, etc)--STAY AWAY FROM VISINE!-- THAT HIS eye pain will settle down. He'll argue this point with you-- and that's ok. But it is the truth that crying dries the eyes out. He may also be experiencing inflammation of the lacrimal tear ducts that are under the eyelids-- and that too would make his eyes very dry and sensitive.The other part is that if Jake is light sensitive-- he may have Iritis (inflammation of the iris) or Uveitis (inflammation of the spiderweb like meshwork that helps the iris open and close to lights) and this is a regular problem with inflammatory diseases--sarcoidosis, Neurosarc, arthritis and Sjorgens syndrome. When the iris gets inflammed, your eyes can't dilate to block out the bright lights- and this is very painful--and serious --as it can lead to glaucoma. (Yep, kids can get glaucoma also).Get him in to an Ophthalmologist-- MD for the eyes--and have his eyes checked. His future vision may depend on it. Also, if he has active sarcoidosis-- Lungs are the first place it shows up in 80% of the people, eyes are the second place.My history with this disease is that it was my Ophthalmologist that caught my symptoms- and he figured it was a systemic form of arthritis-- long shot was that it would be sarcoidosis. I won on the longshot.Fortunately, I was working for this MD-- and he truly has saved my vision. It was under his care and employment that I became a Certified Ophthalmic Assistant-- (I've let the certification go) but I sure learned alot about eyes-- and that you don't mess with eye pain of any kind.Your Jake sounds like my son-- who's now 23-- but isn't it a blast! Their personalities never cease to amaze us! Blessings to you,TracieNS Co-owner/moderator

[Guest guest]

Thanks Marla

for the encouragement. I can read between the lines but it's not that easy to get a second opinion here in NZ we only have 4 major hospitals here in NZ and to get to see the other ones we would need to get a referral from the doctors we are seeing.. But if we have know joy in October we will have to see about going else where. Thanks for getting back to me

Moana

Re: Re: My Son Jake

I just thought I would let you know that he was not crying out of Frustration but more to the fact that his eyes were really sore.

Moana,When Jakes eyes get sore-- is he light sensitive? Or is it that his eyes are sore from crying.The reason I ask is that when we cry-- our eyes actually become very dry from too much tear production getting the normal tears that lubricate our eyes out of balance. You may find that by having him use Artificial Tears (Tears Naturale, Hypotears, etc)--STAY AWAY FROM VISINE!-- THAT HIS eye pain will settle down. He'll argue this point with you-- and that's ok. But it is the truth that crying dries the eyes out. He may also be experiencing inflammation of the lacrimal tear ducts that are under the eyelids-- and that too would make his eyes very dry and sensitive.The other part is that if Jake is light sensitive-- he may have Iritis (inflammation of the iris) or Uveitis (inflammation of the spiderweb like meshwork that helps the iris open and close to lights) and this is a regular problem with inflammatory diseases--sarcoidosis, Neurosarc, arthritis and Sjorgens syndrome. When the iris gets inflammed, your eyes can't dilate to block out the bright lights- and this is very painful--and serious --as it can lead to glaucoma. (Yep, kids can get glaucoma also).Get him in to an Ophthalmologist-- MD for the eyes--and have his eyes checked. His future vision may depend on it. Also, if he has active sarcoidosis-- Lungs are the first place it shows up in 80% of the people, eyes are the second place.My history with this disease is that it was my Ophthalmologist that caught my symptoms- and he figured it was a systemic form of arthritis-- long shot was that it would be sarcoidosis. I won on the longshot.Fortunately, I was working for this MD-- and he truly has saved my vision. It was under his care and employment that I became a Certified Ophthalmic Assistant-- (I've let the certification go) but I sure learned alot about eyes-- and that you don't mess with eye pain of any kind.Your Jake sounds like my son-- who's now 23-- but isn't it a blast! Their personalities never cease to amaze us! Blessings to you,TracieNS Co-owner/moderator

[Guest guest]

Hi there Rose

You are such a kind and wonderful lady I do appreciate all the things you have been saying and sending Jake little bits and pieces it's nice to be acknowledge here in my HH site they really do not bother with me which is really annoying!!!

This test called Gallium scan is that were they put some sort of dye in his body to find tumours? If it is that the doctors have decided not to do this test yes I know it is really annoying.. They still think NF1 but I don't think sooooo. They are thinking about doing a lung MRI to see if sarcoidosis is there but really I think they don't really know what to do. He will have to go up to Christchurch for another GNaH test soon as things aren't go to good with the PP at moment may have to up his dosage not like I haven't told them that they should have done this long ago but like I say I am just a mare Mother!!!!

I will check out your question for doctors also and yes planning on taking Nana with us next time she is good at getting her point across and is really good at asking questions and getting her point across..

Catch up soon baby waking take care

Moana Jakes Mum

RE: my son Jake

Moana, is the test you are talking about an ACE level? The ACE, along with sed rate, c-reactive protein & others can indicate inflammation. It's not specific to sarcoidosis, but if they rule out all other possible sources, then sarcoidosis (or neurosarc if there are signs of central or peripheral nervous system involvement) gets credit for it. But you can also have normal ACE & other markers for inflammation & still have sarc, so that's why it's so tricky. There is a test called a Gallium scan which can show up areas of the body with inflammation, but again, it doesn't tell exactly what is causing the inflammation. I know how frustrating & scary this can be for myself as an adult; I can't imagine how you must feel trying to do the best for your young son. Look for the message I posted earlier Tuesday (oops, EST in the U.S!) about talking to doctors. You might get some ideas there. And take someone with you who is not too emotionally involved. This person's job is to make sure that all your questions & concerns are addressed before the doctor leaves that room.

I'm going to send Jake a card I think he'll like. Tell him it's from Indiana, where we have lots of farms, corn, soybeans, hogs, chickens, & horses.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: my son JakeDate: Mon, 10 Jul 2006 23:52:44 -0000

Hi just thought I 'd let you all know Had Jakes blood results back today and they are double what they class as normal but on the other token the other test they do to conteract this is completly ok with in range. So back to sqaure one again doc going back to radioligist to go over his MRI may have to go back soon to see them. I would like them to do full body scan to make sure there are NO other tumours in his body but they don't want to listen to me getting really P***** off now. Oh Well catch up soonMoana Waldron Mum to Jake 9.

Get the new Windows Live Messenger!

[Guest guest]

Hi there Rose

You are such a kind and wonderful lady I do appreciate all the things you have been saying and sending Jake little bits and pieces it's nice to be acknowledge here in my HH site they really do not bother with me which is really annoying!!!

This test called Gallium scan is that were they put some sort of dye in his body to find tumours? If it is that the doctors have decided not to do this test yes I know it is really annoying.. They still think NF1 but I don't think sooooo. They are thinking about doing a lung MRI to see if sarcoidosis is there but really I think they don't really know what to do. He will have to go up to Christchurch for another GNaH test soon as things aren't go to good with the PP at moment may have to up his dosage not like I haven't told them that they should have done this long ago but like I say I am just a mare Mother!!!!

I will check out your question for doctors also and yes planning on taking Nana with us next time she is good at getting her point across and is really good at asking questions and getting her point across..

Catch up soon baby waking take care

Moana Jakes Mum

RE: my son Jake

Moana, is the test you are talking about an ACE level? The ACE, along with sed rate, c-reactive protein & others can indicate inflammation. It's not specific to sarcoidosis, but if they rule out all other possible sources, then sarcoidosis (or neurosarc if there are signs of central or peripheral nervous system involvement) gets credit for it. But you can also have normal ACE & other markers for inflammation & still have sarc, so that's why it's so tricky. There is a test called a Gallium scan which can show up areas of the body with inflammation, but again, it doesn't tell exactly what is causing the inflammation. I know how frustrating & scary this can be for myself as an adult; I can't imagine how you must feel trying to do the best for your young son. Look for the message I posted earlier Tuesday (oops, EST in the U.S!) about talking to doctors. You might get some ideas there. And take someone with you who is not too emotionally involved. This person's job is to make sure that all your questions & concerns are addressed before the doctor leaves that room.

I'm going to send Jake a card I think he'll like. Tell him it's from Indiana, where we have lots of farms, corn, soybeans, hogs, chickens, & horses.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: my son JakeDate: Mon, 10 Jul 2006 23:52:44 -0000

Hi just thought I 'd let you all know Had Jakes blood results back today and they are double what they class as normal but on the other token the other test they do to conteract this is completly ok with in range. So back to sqaure one again doc going back to radioligist to go over his MRI may have to go back soon to see them. I would like them to do full body scan to make sure there are NO other tumours in his body but they don't want to listen to me getting really P***** off now. Oh Well catch up soonMoana Waldron Mum to Jake 9.

Get the new Windows Live Messenger!

[Guest guest]

Hi there Rose

You are such a kind and wonderful lady I do appreciate all the things you have been saying and sending Jake little bits and pieces it's nice to be acknowledge here in my HH site they really do not bother with me which is really annoying!!!

This test called Gallium scan is that were they put some sort of dye in his body to find tumours? If it is that the doctors have decided not to do this test yes I know it is really annoying.. They still think NF1 but I don't think sooooo. They are thinking about doing a lung MRI to see if sarcoidosis is there but really I think they don't really know what to do. He will have to go up to Christchurch for another GNaH test soon as things aren't go to good with the PP at moment may have to up his dosage not like I haven't told them that they should have done this long ago but like I say I am just a mare Mother!!!!

I will check out your question for doctors also and yes planning on taking Nana with us next time she is good at getting her point across and is really good at asking questions and getting her point across..

Catch up soon baby waking take care

Moana Jakes Mum

RE: my son Jake

Moana, is the test you are talking about an ACE level? The ACE, along with sed rate, c-reactive protein & others can indicate inflammation. It's not specific to sarcoidosis, but if they rule out all other possible sources, then sarcoidosis (or neurosarc if there are signs of central or peripheral nervous system involvement) gets credit for it. But you can also have normal ACE & other markers for inflammation & still have sarc, so that's why it's so tricky. There is a test called a Gallium scan which can show up areas of the body with inflammation, but again, it doesn't tell exactly what is causing the inflammation. I know how frustrating & scary this can be for myself as an adult; I can't imagine how you must feel trying to do the best for your young son. Look for the message I posted earlier Tuesday (oops, EST in the U.S!) about talking to doctors. You might get some ideas there. And take someone with you who is not too emotionally involved. This person's job is to make sure that all your questions & concerns are addressed before the doctor leaves that room.

I'm going to send Jake a card I think he'll like. Tell him it's from Indiana, where we have lots of farms, corn, soybeans, hogs, chickens, & horses.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: my son JakeDate: Mon, 10 Jul 2006 23:52:44 -0000

Hi just thought I 'd let you all know Had Jakes blood results back today and they are double what they class as normal but on the other token the other test they do to conteract this is completly ok with in range. So back to sqaure one again doc going back to radioligist to go over his MRI may have to go back soon to see them. I would like them to do full body scan to make sure there are NO other tumours in his body but they don't want to listen to me getting really P***** off now. Oh Well catch up soonMoana Waldron Mum to Jake 9.

Get the new Windows Live Messenger!

[Guest guest]

Moana,

I know

it’s terrible frustrating, in all my rounds, I had a doctor tell me I was

just depressed, despite testing that “suggested” NS. It’s

just hard to get a diagnosis, everyone wants to pass the buck. I know how hard

it is for us adults trying to deal with this, but I can’t even imagine

how parents must feel, I know when my kids are sick or in pain, I just want to

be able to take the pain for them. Know there is a lot of love and support

coming your way.

Blessings,

Marla

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Shane & Moana Waldron

Sent: Wednesday, July 12, 2006

8:03 PM

To:

Neurosarcoidosis

Subject: Re:

Re: My Son Jake

Thanks Marla

for the encouragement. I can read between the

lines but it's not that easy to get a second opinion here in NZ we only have 4

major hospitals here in NZ and to get to see the other ones we would need to

get a referral from the doctors we are seeing.. But if we have know joy

in October we will have to see about going else where. Thanks for getting

back to me

Moana

Re: Re: My Son Jake

In

a message dated 7/4/06 10:32:22 PM Pacific Daylight Time, shaneandmoana@...

writes:

I just

thought I would let you know that he was not crying out of

Frustration but more to the fact that his

eyes were really sore.

Moana,

When Jakes eyes get sore-- is he light sensitive? Or is it that his eyes

are sore from crying.

The reason I ask is that when we cry-- our eyes actually become very dry from

too much tear production getting the normal tears that lubricate our eyes out

of balance. You may find that by having him use Artificial Tears (Tears

Naturale, Hypotears, etc)--STAY AWAY FROM VISINE!-- THAT HIS eye pain will

settle down.

He'll argue this point with you-- and that's ok. But it is the truth that

crying dries the eyes out. He may also be experiencing inflammation of

the lacrimal tear ducts that are under the eyelids-- and that too would make

his eyes very dry and sensitive.

The other part is that if Jake is light sensitive-- he may have Iritis

(inflammation of the iris) or Uveitis (inflammation of the spiderweb like

meshwork that helps the iris open and close to lights) and this is a regular

problem with inflammatory diseases--sarcoidosis, Neurosarc, arthritis and

Sjorgens syndrome. When the iris gets inflammed, your eyes can't dilate

to block out the bright lights- and this is very painful--and serious --as it

can lead to glaucoma. (Yep, kids can get glaucoma also).

Get him in to an Ophthalmologist-- MD for the eyes--and have his eyes

checked. His future vision may depend on it. Also, if he has active

sarcoidosis-- Lungs are the first place it shows up in 80% of the people, eyes

are the second place.

My history with this disease is that it was my Ophthalmologist that caught my

symptoms- and he figured it was a systemic form of arthritis-- long shot was

that it would be sarcoidosis. I won on the longshot.

Fortunately, I was working for this MD-- and he truly

has saved my vision. It was under his care and employment that I became a

Certified Ophthalmic Assistant-- (I've let the certification go) but I sure

learned alot about eyes-- and that you don't mess with eye pain of any kind.

Your Jake sounds like my son-- who's now 23-- but isn't it a blast! Their

personalities never cease to amaze us!

Blessings to you,

Tracie

NS Co-owner/moderator

[Guest guest]

Moana,

I know

it’s terrible frustrating, in all my rounds, I had a doctor tell me I was

just depressed, despite testing that “suggested” NS. It’s

just hard to get a diagnosis, everyone wants to pass the buck. I know how hard

it is for us adults trying to deal with this, but I can’t even imagine

how parents must feel, I know when my kids are sick or in pain, I just want to

be able to take the pain for them. Know there is a lot of love and support

coming your way.

Blessings,

Marla

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Shane & Moana Waldron

Sent: Wednesday, July 12, 2006

8:03 PM

To:

Neurosarcoidosis

Subject: Re:

Re: My Son Jake

Thanks Marla

for the encouragement. I can read between the

lines but it's not that easy to get a second opinion here in NZ we only have 4

major hospitals here in NZ and to get to see the other ones we would need to

get a referral from the doctors we are seeing.. But if we have know joy

in October we will have to see about going else where. Thanks for getting

back to me

Moana

Re: Re: My Son Jake

In

a message dated 7/4/06 10:32:22 PM Pacific Daylight Time, shaneandmoana@...

writes:

I just

thought I would let you know that he was not crying out of

Frustration but more to the fact that his

eyes were really sore.

Moana,

When Jakes eyes get sore-- is he light sensitive? Or is it that his eyes

are sore from crying.

The reason I ask is that when we cry-- our eyes actually become very dry from

too much tear production getting the normal tears that lubricate our eyes out

of balance. You may find that by having him use Artificial Tears (Tears

Naturale, Hypotears, etc)--STAY AWAY FROM VISINE!-- THAT HIS eye pain will

settle down.

He'll argue this point with you-- and that's ok. But it is the truth that

crying dries the eyes out. He may also be experiencing inflammation of

the lacrimal tear ducts that are under the eyelids-- and that too would make

his eyes very dry and sensitive.

The other part is that if Jake is light sensitive-- he may have Iritis

(inflammation of the iris) or Uveitis (inflammation of the spiderweb like

meshwork that helps the iris open and close to lights) and this is a regular

problem with inflammatory diseases--sarcoidosis, Neurosarc, arthritis and

Sjorgens syndrome. When the iris gets inflammed, your eyes can't dilate

to block out the bright lights- and this is very painful--and serious --as it

can lead to glaucoma. (Yep, kids can get glaucoma also).

Get him in to an Ophthalmologist-- MD for the eyes--and have his eyes

checked. His future vision may depend on it. Also, if he has active

sarcoidosis-- Lungs are the first place it shows up in 80% of the people, eyes

are the second place.

My history with this disease is that it was my Ophthalmologist that caught my

symptoms- and he figured it was a systemic form of arthritis-- long shot was

that it would be sarcoidosis. I won on the longshot.

Fortunately, I was working for this MD-- and he truly

has saved my vision. It was under his care and employment that I became a

Certified Ophthalmic Assistant-- (I've let the certification go) but I sure

learned alot about eyes-- and that you don't mess with eye pain of any kind.

Your Jake sounds like my son-- who's now 23-- but isn't it a blast! Their

personalities never cease to amaze us!

Blessings to you,

Tracie

NS Co-owner/moderator

[Guest guest]

Moana,

I know

it’s terrible frustrating, in all my rounds, I had a doctor tell me I was

just depressed, despite testing that “suggested” NS. It’s

just hard to get a diagnosis, everyone wants to pass the buck. I know how hard

it is for us adults trying to deal with this, but I can’t even imagine

how parents must feel, I know when my kids are sick or in pain, I just want to

be able to take the pain for them. Know there is a lot of love and support

coming your way.

Blessings,

Marla

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Shane & Moana Waldron

Sent: Wednesday, July 12, 2006

8:03 PM

To:

Neurosarcoidosis

Subject: Re:

Re: My Son Jake

Thanks Marla

for the encouragement. I can read between the

lines but it's not that easy to get a second opinion here in NZ we only have 4

major hospitals here in NZ and to get to see the other ones we would need to

get a referral from the doctors we are seeing.. But if we have know joy

in October we will have to see about going else where. Thanks for getting

back to me

Moana

Re: Re: My Son Jake

In

a message dated 7/4/06 10:32:22 PM Pacific Daylight Time, shaneandmoana@...

writes:

I just

thought I would let you know that he was not crying out of

Frustration but more to the fact that his

eyes were really sore.

Moana,

When Jakes eyes get sore-- is he light sensitive? Or is it that his eyes

are sore from crying.

The reason I ask is that when we cry-- our eyes actually become very dry from

too much tear production getting the normal tears that lubricate our eyes out

of balance. You may find that by having him use Artificial Tears (Tears

Naturale, Hypotears, etc)--STAY AWAY FROM VISINE!-- THAT HIS eye pain will

settle down.

He'll argue this point with you-- and that's ok. But it is the truth that

crying dries the eyes out. He may also be experiencing inflammation of

the lacrimal tear ducts that are under the eyelids-- and that too would make

his eyes very dry and sensitive.

The other part is that if Jake is light sensitive-- he may have Iritis

(inflammation of the iris) or Uveitis (inflammation of the spiderweb like

meshwork that helps the iris open and close to lights) and this is a regular

problem with inflammatory diseases--sarcoidosis, Neurosarc, arthritis and

Sjorgens syndrome. When the iris gets inflammed, your eyes can't dilate

to block out the bright lights- and this is very painful--and serious --as it

can lead to glaucoma. (Yep, kids can get glaucoma also).

Get him in to an Ophthalmologist-- MD for the eyes--and have his eyes

checked. His future vision may depend on it. Also, if he has active

sarcoidosis-- Lungs are the first place it shows up in 80% of the people, eyes

are the second place.

My history with this disease is that it was my Ophthalmologist that caught my

symptoms- and he figured it was a systemic form of arthritis-- long shot was

that it would be sarcoidosis. I won on the longshot.

Fortunately, I was working for this MD-- and he truly

has saved my vision. It was under his care and employment that I became a

Certified Ophthalmic Assistant-- (I've let the certification go) but I sure

learned alot about eyes-- and that you don't mess with eye pain of any kind.

Your Jake sounds like my son-- who's now 23-- but isn't it a blast! Their

personalities never cease to amaze us!

Blessings to you,

Tracie

NS Co-owner/moderator

[Guest guest]

How about Oregon? I'll bet Jake would like all kinds of cards from all over the state. How are you sending? Postal or email? My 10 year old grand daughter would love to email him. So would I. ShirleyShane & Moana Waldron wrote: Hi there Rose You are such a kind and wonderful lady I do appreciate

all the things you have been saying and sending Jake little bits and pieces it's nice to be acknowledge here in my HH site they really do not bother with me which is really annoying!!! This test called Gallium scan is that were they put some sort of dye in his body to find tumours? If it is that the doctors have decided not to do this test yes I know it is really annoying.. They still think NF1 but I don't think sooooo. They are thinking about doing a lung MRI to see if sarcoidosis is there but really I think they don't really know what to do. He will have to go up to Christchurch for another GNaH test soon as things aren't go to good with the PP at moment may have to up his dosage not like I haven't told them that they should have done this long ago but like I say I am just

a mare Mother!!!! I will check out your question for doctors also and yes planning on taking Nana with us next time she is good at getting her point across and is really good at asking questions and getting her point across.. Catch up soon baby waking take care Moana Jakes Mum RE: my son Jake Moana, is the test you are talking about an ACE level? The ACE, along with sed rate, c-reactive protein & others can indicate inflammation. It's not specific to sarcoidosis, but if they rule out all other possible sources, then sarcoidosis (or neurosarc if there are signs of central or peripheral nervous system involvement) gets credit for it. But you can also have normal ACE & other markers for inflammation & still have sarc, so that's why it's so tricky. There is a test called a Gallium scan which can show up areas of the body with inflammation, but again, it doesn't tell exactly what is causing the inflammation. I know how frustrating & scary this can be for myself as an adult; I can't imagine how you must feel

trying to do the best for your young son. Look for the message I posted earlier Tuesday (oops, EST in the U.S!) about talking to doctors. You might get some ideas there. And take someone with you who is not too emotionally involved. This person's job is to make sure that all your questions & concerns are addressed before the doctor leaves that room. I'm going to send Jake a card I think he'll like. Tell him it's from Indiana, where we have lots of farms, corn, soybeans, hogs, chickens, & horses. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: my son JakeDate: Mon, 10 Jul 2006 23:52:44 -0000 Hi just thought I 'd let you all know Had Jakes blood results back today and they are double what they class as normal but on the other token the other test they do to conteract this is completly ok with in range. So back to sqaure one again doc going back to radioligist to go over his MRI may have to go back soon to see them. I would like them to do full body scan to make sure there are NO other tumours in his body but they don't want to listen to me getting really P***** off now. Oh Well catch up soonMoana Waldron Mum to Jake

9. Get the new Windows Live Messenger!

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

How about Oregon? I'll bet Jake would like all kinds of cards from all over the state. How are you sending? Postal or email? My 10 year old grand daughter would love to email him. So would I. ShirleyShane & Moana Waldron wrote: Hi there Rose You are such a kind and wonderful lady I do appreciate

all the things you have been saying and sending Jake little bits and pieces it's nice to be acknowledge here in my HH site they really do not bother with me which is really annoying!!! This test called Gallium scan is that were they put some sort of dye in his body to find tumours? If it is that the doctors have decided not to do this test yes I know it is really annoying.. They still think NF1 but I don't think sooooo. They are thinking about doing a lung MRI to see if sarcoidosis is there but really I think they don't really know what to do. He will have to go up to Christchurch for another GNaH test soon as things aren't go to good with the PP at moment may have to up his dosage not like I haven't told them that they should have done this long ago but like I say I am just

a mare Mother!!!! I will check out your question for doctors also and yes planning on taking Nana with us next time she is good at getting her point across and is really good at asking questions and getting her point across.. Catch up soon baby waking take care Moana Jakes Mum RE: my son Jake Moana, is the test you are talking about an ACE level? The ACE, along with sed rate, c-reactive protein & others can indicate inflammation. It's not specific to sarcoidosis, but if they rule out all other possible sources, then sarcoidosis (or neurosarc if there are signs of central or peripheral nervous system involvement) gets credit for it. But you can also have normal ACE & other markers for inflammation & still have sarc, so that's why it's so tricky. There is a test called a Gallium scan which can show up areas of the body with inflammation, but again, it doesn't tell exactly what is causing the inflammation. I know how frustrating & scary this can be for myself as an adult; I can't imagine how you must feel

trying to do the best for your young son. Look for the message I posted earlier Tuesday (oops, EST in the U.S!) about talking to doctors. You might get some ideas there. And take someone with you who is not too emotionally involved. This person's job is to make sure that all your questions & concerns are addressed before the doctor leaves that room. I'm going to send Jake a card I think he'll like. Tell him it's from Indiana, where we have lots of farms, corn, soybeans, hogs, chickens, & horses. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: my son JakeDate: Mon, 10 Jul 2006 23:52:44 -0000 Hi just thought I 'd let you all know Had Jakes blood results back today and they are double what they class as normal but on the other token the other test they do to conteract this is completly ok with in range. So back to sqaure one again doc going back to radioligist to go over his MRI may have to go back soon to see them. I would like them to do full body scan to make sure there are NO other tumours in his body but they don't want to listen to me getting really P***** off now. Oh Well catch up soonMoana Waldron Mum to Jake

9. Get the new Windows Live Messenger!

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

How about Oregon? I'll bet Jake would like all kinds of cards from all over the state. How are you sending? Postal or email? My 10 year old grand daughter would love to email him. So would I. ShirleyShane & Moana Waldron wrote: Hi there Rose You are such a kind and wonderful lady I do appreciate

all the things you have been saying and sending Jake little bits and pieces it's nice to be acknowledge here in my HH site they really do not bother with me which is really annoying!!! This test called Gallium scan is that were they put some sort of dye in his body to find tumours? If it is that the doctors have decided not to do this test yes I know it is really annoying.. They still think NF1 but I don't think sooooo. They are thinking about doing a lung MRI to see if sarcoidosis is there but really I think they don't really know what to do. He will have to go up to Christchurch for another GNaH test soon as things aren't go to good with the PP at moment may have to up his dosage not like I haven't told them that they should have done this long ago but like I say I am just

a mare Mother!!!! I will check out your question for doctors also and yes planning on taking Nana with us next time she is good at getting her point across and is really good at asking questions and getting her point across.. Catch up soon baby waking take care Moana Jakes Mum RE: my son Jake Moana, is the test you are talking about an ACE level? The ACE, along with sed rate, c-reactive protein & others can indicate inflammation. It's not specific to sarcoidosis, but if they rule out all other possible sources, then sarcoidosis (or neurosarc if there are signs of central or peripheral nervous system involvement) gets credit for it. But you can also have normal ACE & other markers for inflammation & still have sarc, so that's why it's so tricky. There is a test called a Gallium scan which can show up areas of the body with inflammation, but again, it doesn't tell exactly what is causing the inflammation. I know how frustrating & scary this can be for myself as an adult; I can't imagine how you must feel

trying to do the best for your young son. Look for the message I posted earlier Tuesday (oops, EST in the U.S!) about talking to doctors. You might get some ideas there. And take someone with you who is not too emotionally involved. This person's job is to make sure that all your questions & concerns are addressed before the doctor leaves that room. I'm going to send Jake a card I think he'll like. Tell him it's from Indiana, where we have lots of farms, corn, soybeans, hogs, chickens, & horses. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: my son JakeDate: Mon, 10 Jul 2006 23:52:44 -0000 Hi just thought I 'd let you all know Had Jakes blood results back today and they are double what they class as normal but on the other token the other test they do to conteract this is completly ok with in range. So back to sqaure one again doc going back to radioligist to go over his MRI may have to go back soon to see them. I would like them to do full body scan to make sure there are NO other tumours in his body but they don't want to listen to me getting really P***** off now. Oh Well catch up soonMoana Waldron Mum to Jake

9. Get the new Windows Live Messenger!

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Thank you

from Moana

Re: Re: My Son Jake

I just thought I would let you know that he was not crying out of Frustration but more to the fact that his eyes were really sore.

Moana,When Jakes eyes get sore-- is he light sensitive? Or is it that his eyes are sore from crying.The reason I ask is that when we cry-- our eyes actually become very dry from too much tear production getting the normal tears that lubricate our eyes out of balance. You may find that by having him use Artificial Tears (Tears Naturale, Hypotears, etc)--STAY AWAY FROM VISINE!-- THAT HIS eye pain will settle down. He'll argue this point with you-- and that's ok. But it is the truth that crying dries the eyes out. He may also be experiencing inflammation of the lacrimal tear ducts that are under the eyelids-- and that too would make his eyes very dry and sensitive.The other part is that if Jake is light sensitive-- he may have Iritis (inflammation of the iris) or Uveitis (inflammation of the spiderweb like meshwork that helps the iris open and close to lights) and this is a regular problem with inflammatory diseases--sarcoidosis, Neurosarc, arthritis and Sjorgens syndrome. When the iris gets inflammed, your eyes can't dilate to block out the bright lights- and this is very painful--and serious --as it can lead to glaucoma. (Yep, kids can get glaucoma also).Get him in to an Ophthalmologist-- MD for the eyes--and have his eyes checked. His future vision may depend on it. Also, if he has active sarcoidosis-- Lungs are the first place it shows up in 80% of the people, eyes are the second place.My history with this disease is that it was my Ophthalmologist that caught my symptoms- and he figured it was a systemic form of arthritis-- long shot was that it would be sarcoidosis. I won on the longshot.Fortunately, I was working for this MD-- and he truly has saved my vision. It was under his care and employment that I became a Certified Ophthalmic Assistant-- (I've let the certification go) but I sure learned alot about eyes-- and that you don't mess with eye pain of any kind.Your Jake sounds like my son-- who's now 23-- but isn't it a blast! Their personalities never cease to amaze us! Blessings to you,TracieNS Co-owner/moderator

[Guest guest]

Thank you

from Moana

Re: Re: My Son Jake

I just thought I would let you know that he was not crying out of Frustration but more to the fact that his eyes were really sore.

Moana,When Jakes eyes get sore-- is he light sensitive? Or is it that his eyes are sore from crying.The reason I ask is that when we cry-- our eyes actually become very dry from too much tear production getting the normal tears that lubricate our eyes out of balance. You may find that by having him use Artificial Tears (Tears Naturale, Hypotears, etc)--STAY AWAY FROM VISINE!-- THAT HIS eye pain will settle down. He'll argue this point with you-- and that's ok. But it is the truth that crying dries the eyes out. He may also be experiencing inflammation of the lacrimal tear ducts that are under the eyelids-- and that too would make his eyes very dry and sensitive.The other part is that if Jake is light sensitive-- he may have Iritis (inflammation of the iris) or Uveitis (inflammation of the spiderweb like meshwork that helps the iris open and close to lights) and this is a regular problem with inflammatory diseases--sarcoidosis, Neurosarc, arthritis and Sjorgens syndrome. When the iris gets inflammed, your eyes can't dilate to block out the bright lights- and this is very painful--and serious --as it can lead to glaucoma. (Yep, kids can get glaucoma also).Get him in to an Ophthalmologist-- MD for the eyes--and have his eyes checked. His future vision may depend on it. Also, if he has active sarcoidosis-- Lungs are the first place it shows up in 80% of the people, eyes are the second place.My history with this disease is that it was my Ophthalmologist that caught my symptoms- and he figured it was a systemic form of arthritis-- long shot was that it would be sarcoidosis. I won on the longshot.Fortunately, I was working for this MD-- and he truly has saved my vision. It was under his care and employment that I became a Certified Ophthalmic Assistant-- (I've let the certification go) but I sure learned alot about eyes-- and that you don't mess with eye pain of any kind.Your Jake sounds like my son-- who's now 23-- but isn't it a blast! Their personalities never cease to amaze us! Blessings to you,TracieNS Co-owner/moderator

[Guest guest]

Thank you

from Moana

Re: Re: My Son Jake

I just thought I would let you know that he was not crying out of Frustration but more to the fact that his eyes were really sore.

Moana,When Jakes eyes get sore-- is he light sensitive? Or is it that his eyes are sore from crying.The reason I ask is that when we cry-- our eyes actually become very dry from too much tear production getting the normal tears that lubricate our eyes out of balance. You may find that by having him use Artificial Tears (Tears Naturale, Hypotears, etc)--STAY AWAY FROM VISINE!-- THAT HIS eye pain will settle down. He'll argue this point with you-- and that's ok. But it is the truth that crying dries the eyes out. He may also be experiencing inflammation of the lacrimal tear ducts that are under the eyelids-- and that too would make his eyes very dry and sensitive.The other part is that if Jake is light sensitive-- he may have Iritis (inflammation of the iris) or Uveitis (inflammation of the spiderweb like meshwork that helps the iris open and close to lights) and this is a regular problem with inflammatory diseases--sarcoidosis, Neurosarc, arthritis and Sjorgens syndrome. When the iris gets inflammed, your eyes can't dilate to block out the bright lights- and this is very painful--and serious --as it can lead to glaucoma. (Yep, kids can get glaucoma also).Get him in to an Ophthalmologist-- MD for the eyes--and have his eyes checked. His future vision may depend on it. Also, if he has active sarcoidosis-- Lungs are the first place it shows up in 80% of the people, eyes are the second place.My history with this disease is that it was my Ophthalmologist that caught my symptoms- and he figured it was a systemic form of arthritis-- long shot was that it would be sarcoidosis. I won on the longshot.Fortunately, I was working for this MD-- and he truly has saved my vision. It was under his care and employment that I became a Certified Ophthalmic Assistant-- (I've let the certification go) but I sure learned alot about eyes-- and that you don't mess with eye pain of any kind.Your Jake sounds like my son-- who's now 23-- but isn't it a blast! Their personalities never cease to amaze us! Blessings to you,TracieNS Co-owner/moderator

[Guest guest]

Moana,

My Family would also love to join in sending Jake cards...let us

know how the best way to sent them please....

TTFN

Ruth

> Hi there Rose

>

> You are such a kind and wonderful lady I do appreciate all the

things you have been saying and sending Jake little bits and pieces

it's nice to be acknowledge here in my HH site they really do not

bother with me which is really annoying!!!

>

> This test called Gallium scan is that were they put some sort

of dye in his body to find tumours? If it is that the doctors have

decided not to do this test yes I know it is really annoying.. They

still think NF1 but I don't think sooooo. They are thinking about

doing a lung MRI to see if sarcoidosis is there but really I think

they don't really know what to do. He will have to go up to

Christchurch for another GNaH test soon as things aren't go to good

with the PP at moment may have to up his dosage not like I haven't

told them that they should have done this long ago but like I say I

am just a mare Mother!!!!

>

> I will check out your question for doctors also and yes planning

on taking Nana with us next time she is good at getting her point

across and is really good at asking questions and getting her point

across..

>

> Catch up soon baby waking take care

>

> Moana Jakes Mum

> my son Jake

> Date: Mon, 10 Jul 2006 23:52:44 -0000

>

> Hi just thought I 'd let you all know Had Jakes blood

results back

> today and they are double what they class as normal but on the

other

> token the other test they do to conteract this is completly ok

with in

> range. So back to sqaure one again doc going back to radioligist

to go

> over his MRI may have to go back soon to see them. I would like

them

> to do full body scan to make sure there are NO other tumours in

his

> body but they don't want to listen to me getting really P***** off

> now. Oh Well catch up soon

>

> Moana Waldron Mum to Jake 9.

>

>

>

>

>

>

>

>

>

> ---------------------------------

> Get the new Windows Live Messenger!

>

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

[Guest guest]

Moana,

My Family would also love to join in sending Jake cards...let us

know how the best way to sent them please....

TTFN

Ruth

> Hi there Rose

>

> You are such a kind and wonderful lady I do appreciate all the

things you have been saying and sending Jake little bits and pieces

it's nice to be acknowledge here in my HH site they really do not

bother with me which is really annoying!!!

>

> This test called Gallium scan is that were they put some sort

of dye in his body to find tumours? If it is that the doctors have

decided not to do this test yes I know it is really annoying.. They

still think NF1 but I don't think sooooo. They are thinking about

doing a lung MRI to see if sarcoidosis is there but really I think

they don't really know what to do. He will have to go up to

Christchurch for another GNaH test soon as things aren't go to good

with the PP at moment may have to up his dosage not like I haven't

told them that they should have done this long ago but like I say I

am just a mare Mother!!!!

>

> I will check out your question for doctors also and yes planning

on taking Nana with us next time she is good at getting her point

across and is really good at asking questions and getting her point

across..

>

> Catch up soon baby waking take care

>

> Moana Jakes Mum

> my son Jake

> Date: Mon, 10 Jul 2006 23:52:44 -0000

>

> Hi just thought I 'd let you all know Had Jakes blood

results back

> today and they are double what they class as normal but on the

other

> token the other test they do to conteract this is completly ok

with in

> range. So back to sqaure one again doc going back to radioligist

to go

> over his MRI may have to go back soon to see them. I would like

them

> to do full body scan to make sure there are NO other tumours in

his

> body but they don't want to listen to me getting really P***** off

> now. Oh Well catch up soon

>

> Moana Waldron Mum to Jake 9.

>

>

>

>

>

>

>

>

>

> ---------------------------------

> Get the new Windows Live Messenger!

>

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

[Guest guest]

Moana,

My Family would also love to join in sending Jake cards...let us

know how the best way to sent them please....

TTFN

Ruth

> Hi there Rose

>

> You are such a kind and wonderful lady I do appreciate all the

things you have been saying and sending Jake little bits and pieces

it's nice to be acknowledge here in my HH site they really do not

bother with me which is really annoying!!!

>

> This test called Gallium scan is that were they put some sort

of dye in his body to find tumours? If it is that the doctors have

decided not to do this test yes I know it is really annoying.. They

still think NF1 but I don't think sooooo. They are thinking about

doing a lung MRI to see if sarcoidosis is there but really I think

they don't really know what to do. He will have to go up to

Christchurch for another GNaH test soon as things aren't go to good

with the PP at moment may have to up his dosage not like I haven't

told them that they should have done this long ago but like I say I

am just a mare Mother!!!!

>

> I will check out your question for doctors also and yes planning

on taking Nana with us next time she is good at getting her point

across and is really good at asking questions and getting her point

across..

>

> Catch up soon baby waking take care

>

> Moana Jakes Mum

> my son Jake

> Date: Mon, 10 Jul 2006 23:52:44 -0000

>

> Hi just thought I 'd let you all know Had Jakes blood

results back

> today and they are double what they class as normal but on the

other

> token the other test they do to conteract this is completly ok

with in

> range. So back to sqaure one again doc going back to radioligist

to go

> over his MRI may have to go back soon to see them. I would like

them

> to do full body scan to make sure there are NO other tumours in

his

> body but they don't want to listen to me getting really P***** off

> now. Oh Well catch up soon

>

> Moana Waldron Mum to Jake 9.

>

>

>

>

>

>

>

>

>

> ---------------------------------

> Get the new Windows Live Messenger!

>

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

[Guest guest]

Hi There Shirley

We love get emails so if your granddaughter would like to write to Jake via email that would be lovely our address is

shaneandmoana@...

Thank you

Moana Waldron

RE: my son Jake

Moana, is the test you are talking about an ACE level? The ACE, along with sed rate, c-reactive protein & others can indicate inflammation. It's not specific to sarcoidosis, but if they rule out all other possible sources, then sarcoidosis (or neurosarc if there are signs of central or peripheral nervous system involvement) gets credit for it. But you can also have normal ACE & other markers for inflammation & still have sarc, so that's why it's so tricky. There is a test called a Gallium scan which can show up areas of the body with inflammation, but again, it doesn't tell exactly what is causing the inflammation. I know how frustrating & scary this can be for myself as an adult; I can't imagine how you must f eel trying to do the best for your young son. Look for the message I posted earlier Tuesday (oops, EST in the U.S!) about talking to doctors. You might get some ideas there. And take someone with you who is not too emotionally involved. This person's job is to make sure that all your questions & concerns are addressed before the doctor leaves that room.

I'm going to send Jake a card I think he'll like. Tell him it's from Indiana, where we have lots of farms, corn, soybeans, hogs, chickens, & horses.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: my son JakeDate: Mon, 10 Jul 2006 23:52:44 -0000

Hi just thought I 'd let you all know Had Jakes blood results back today and they are double what they class as normal but on the other token the other test they do to conteract this is completly ok with in range. So back to sqaure one again doc going back to radioligist to go over his MRI may have to go back soon to see them. I would like them to do full body scan to make sure there are NO other tumours in his body but they don't want to listen to me getting really P***** off now. Oh Well catch up soonMoana Waldron Mum to Jake 9.

Get the new Windows Live Messenger!

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Hi There Shirley

We love get emails so if your granddaughter would like to write to Jake via email that would be lovely our address is

shaneandmoana@...

Thank you

Moana Waldron

RE: my son Jake

Moana, is the test you are talking about an ACE level? The ACE, along with sed rate, c-reactive protein & others can indicate inflammation. It's not specific to sarcoidosis, but if they rule out all other possible sources, then sarcoidosis (or neurosarc if there are signs of central or peripheral nervous system involvement) gets credit for it. But you can also have normal ACE & other markers for inflammation & still have sarc, so that's why it's so tricky. There is a test called a Gallium scan which can show up areas of the body with inflammation, but again, it doesn't tell exactly what is causing the inflammation. I know how frustrating & scary this can be for myself as an adult; I can't imagine how you must f eel trying to do the best for your young son. Look for the message I posted earlier Tuesday (oops, EST in the U.S!) about talking to doctors. You might get some ideas there. And take someone with you who is not too emotionally involved. This person's job is to make sure that all your questions & concerns are addressed before the doctor leaves that room.

I'm going to send Jake a card I think he'll like. Tell him it's from Indiana, where we have lots of farms, corn, soybeans, hogs, chickens, & horses.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: my son JakeDate: Mon, 10 Jul 2006 23:52:44 -0000

Hi just thought I 'd let you all know Had Jakes blood results back today and they are double what they class as normal but on the other token the other test they do to conteract this is completly ok with in range. So back to sqaure one again doc going back to radioligist to go over his MRI may have to go back soon to see them. I would like them to do full body scan to make sure there are NO other tumours in his body but they don't want to listen to me getting really P***** off now. Oh Well catch up soonMoana Waldron Mum to Jake 9.

Get the new Windows Live Messenger!

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Hi There Shirley

We love get emails so if your granddaughter would like to write to Jake via email that would be lovely our address is

shaneandmoana@...

Thank you

Moana Waldron

RE: my son Jake

Moana, is the test you are talking about an ACE level? The ACE, along with sed rate, c-reactive protein & others can indicate inflammation. It's not specific to sarcoidosis, but if they rule out all other possible sources, then sarcoidosis (or neurosarc if there are signs of central or peripheral nervous system involvement) gets credit for it. But you can also have normal ACE & other markers for inflammation & still have sarc, so that's why it's so tricky. There is a test called a Gallium scan which can show up areas of the body with inflammation, but again, it doesn't tell exactly what is causing the inflammation. I know how frustrating & scary this can be for myself as an adult; I can't imagine how you must f eel trying to do the best for your young son. Look for the message I posted earlier Tuesday (oops, EST in the U.S!) about talking to doctors. You might get some ideas there. And take someone with you who is not too emotionally involved. This person's job is to make sure that all your questions & concerns are addressed before the doctor leaves that room.

I'm going to send Jake a card I think he'll like. Tell him it's from Indiana, where we have lots of farms, corn, soybeans, hogs, chickens, & horses.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: my son JakeDate: Mon, 10 Jul 2006 23:52:44 -0000

Hi just thought I 'd let you all know Had Jakes blood results back today and they are double what they class as normal but on the other token the other test they do to conteract this is completly ok with in range. So back to sqaure one again doc going back to radioligist to go over his MRI may have to go back soon to see them. I would like them to do full body scan to make sure there are NO other tumours in his body but they don't want to listen to me getting really P***** off now. Oh Well catch up soonMoana Waldron Mum to Jake 9.

Get the new Windows Live Messenger!

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Dear Ruth

Thank you Jake will be so excited can you please send them to: shaneandmoana@... .

Well best be off sorry to be rude the Kids are away for the weekend and Shane and I are going out of town for the weekend have not done this in about 8 years just the 2 of us thanks again

From Moana Jakes mum

my son Jake> Date: Mon, 10 Jul 2006 23:52:44 -0000> > Hi just thought I 'd let you all know Had Jakes blood results back > today and they are double what they class as normal but on the other > token the other test they do to conteract this is completly ok with in > range. So back to sqaure one again doc going back to radioligist to go > over his MRI may have to go back soon to see them. I would like them > to do full body scan to make sure there are NO other tumours in his > body but they don't want to listen to me getting really P***** off > now. Oh Well catch up soon> > Moana Waldron Mum to Jake 9.> > > > > > > > > > ---------------------------------> Get the new Windows Live Messenger! > > > > > > > ---------------------------------> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.>

[Guest guest]

Dear Ruth

Thank you Jake will be so excited can you please send them to: shaneandmoana@... .

Well best be off sorry to be rude the Kids are away for the weekend and Shane and I are going out of town for the weekend have not done this in about 8 years just the 2 of us thanks again

From Moana Jakes mum

my son Jake> Date: Mon, 10 Jul 2006 23:52:44 -0000> > Hi just thought I 'd let you all know Had Jakes blood results back > today and they are double what they class as normal but on the other > token the other test they do to conteract this is completly ok with in > range. So back to sqaure one again doc going back to radioligist to go > over his MRI may have to go back soon to see them. I would like them > to do full body scan to make sure there are NO other tumours in his > body but they don't want to listen to me getting really P***** off > now. Oh Well catch up soon> > Moana Waldron Mum to Jake 9.> > > > > > > > > > ---------------------------------> Get the new Windows Live Messenger! > > > > > > > ---------------------------------> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.>

[Guest guest]

Dear Ruth

Thank you Jake will be so excited can you please send them to: shaneandmoana@... .

Well best be off sorry to be rude the Kids are away for the weekend and Shane and I are going out of town for the weekend have not done this in about 8 years just the 2 of us thanks again

From Moana Jakes mum

my son Jake> Date: Mon, 10 Jul 2006 23:52:44 -0000> > Hi just thought I 'd let you all know Had Jakes blood results back > today and they are double what they class as normal but on the other > token the other test they do to conteract this is completly ok with in > range. So back to sqaure one again doc going back to radioligist to go > over his MRI may have to go back soon to see them. I would like them > to do full body scan to make sure there are NO other tumours in his > body but they don't want to listen to me getting really P***** off > now. Oh Well catch up soon> > Moana Waldron Mum to Jake 9.> > > > > > > > > > ---------------------------------> Get the new Windows Live Messenger! > > > > > > > ---------------------------------> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.>

[Guest guest]

Guys, We could send cards to all the children. Sometimes when one child gets sick younger kids feel left out///Connieolehomepla wrote: Moana,My Family would also love to join in sending Jake cards...let us know how the best way to sent them please....TTFNRuth> Hi there Rose > > You are such a kind and wonderful lady I do appreciate all the things you have been saying and sending Jake little bits and pieces it's nice to be acknowledge here in my HH site they really do not bother with me which is really annoying!!!> > This test called Gallium scan is that were they put some sort of dye in his body to find tumours? If it is that the doctors have decided not to do this test yes I know it is really annoying.. They still think NF1 but I don't think sooooo. They are thinking about doing a lung MRI to see if sarcoidosis is there but really I think they don't really know what to do. He will have to go up to Christchurch

for another GNaH test soon as things aren't go to good with the PP at moment may have to up his dosage not like I haven't told them that they should have done this long ago but like I say I am just a mare Mother!!!!> > I will check out your question for doctors also and yes planning on taking Nana with us next time she is good at getting her point across and is really good at asking questions and getting her point across..> > Catch up soon baby waking take care> > Moana Jakes Mum> my son Jake> Date: Mon, 10 Jul 2006 23:52:44 -0000> > Hi just thought I 'd let you all know Had Jakes blood results back > today and they are double what they class as normal but on the other > token the other test they do to conteract this is completly ok with in >

range. So back to sqaure one again doc going back to radioligist to go > over his MRI may have to go back soon to see them. I would like them > to do full body scan to make sure there are NO other tumours in his > body but they don't want to listen to me getting really P***** off > now. Oh Well catch up soon> > Moana Waldron Mum to Jake 9.> > > > > > > > > > ---------------------------------> Get the new Windows Live Messenger! > > > > > > > ---------------------------------> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.>

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