RE: my son Jake

[Guest guest]

Dear Mom,

Jake sounds like his world is a bit of difficult one. Our kids should not be struck with anything of this nature. My heart goes out to you and your family.

I did find this website: http://www.hhugs.com/

and many others by searching with Hamartoma.

The similarities are amazing. Many of us started with pulmonary sarcoidosis and then were treated with high dose prednisone tapered off over several years, and have had the sarcoidosis become systemic and neurological.

The neuro symptoms can include seizures, loss of short term memory, loss of multi-tasking, problem solving skills. Several members suffer from severe seizure problems. We also have a good chance of optic nerve involvement. It's not unusual for us to hypothalmic involvement-- and that leads to the inability to control body temperature, thyroid, hormones and all the other stuff that is controlled by the thalmus and pituatary glands.

I do hope that Jake doesn't have NS. There is so little they can do. I see where you said he's taken to crying- out of frustration and I'm sure the hormone meds they have him on for the precocious puberty. I can only imagine what you as mom are going thru. I do hope you have support for yourself also.

We have had only one other Mom come in with a child that had NS. We've not heard from her in quite a while, -- so I'm not sure what's going on there.

I wish i could be more help-- do check out our LINKS and ARCHIVES and there are alot of articles and site links that may be of value to you. Honestly, I think Jake's in a tougher place than most of us. AT least as adults- it's a tiny bit easier to accept what is going on--even when you're not sure what is going on.

Blessings to you, and to Jake,

Tracie

NS Co-owner/moderator

[Guest guest]

Dear Mom,

Jake sounds like his world is a bit of difficult one. Our kids should not be struck with anything of this nature. My heart goes out to you and your family.

I did find this website: http://www.hhugs.com/

and many others by searching with Hamartoma.

The similarities are amazing. Many of us started with pulmonary sarcoidosis and then were treated with high dose prednisone tapered off over several years, and have had the sarcoidosis become systemic and neurological.

The neuro symptoms can include seizures, loss of short term memory, loss of multi-tasking, problem solving skills. Several members suffer from severe seizure problems. We also have a good chance of optic nerve involvement. It's not unusual for us to hypothalmic involvement-- and that leads to the inability to control body temperature, thyroid, hormones and all the other stuff that is controlled by the thalmus and pituatary glands.

I do hope that Jake doesn't have NS. There is so little they can do. I see where you said he's taken to crying- out of frustration and I'm sure the hormone meds they have him on for the precocious puberty. I can only imagine what you as mom are going thru. I do hope you have support for yourself also.

We have had only one other Mom come in with a child that had NS. We've not heard from her in quite a while, -- so I'm not sure what's going on there.

I wish i could be more help-- do check out our LINKS and ARCHIVES and there are alot of articles and site links that may be of value to you. Honestly, I think Jake's in a tougher place than most of us. AT least as adults- it's a tiny bit easier to accept what is going on--even when you're not sure what is going on.

Blessings to you, and to Jake,

Tracie

NS Co-owner/moderator

[Guest guest]

Dear Mom,

Jake sounds like his world is a bit of difficult one. Our kids should not be struck with anything of this nature. My heart goes out to you and your family.

I did find this website: http://www.hhugs.com/

and many others by searching with Hamartoma.

The similarities are amazing. Many of us started with pulmonary sarcoidosis and then were treated with high dose prednisone tapered off over several years, and have had the sarcoidosis become systemic and neurological.

The neuro symptoms can include seizures, loss of short term memory, loss of multi-tasking, problem solving skills. Several members suffer from severe seizure problems. We also have a good chance of optic nerve involvement. It's not unusual for us to hypothalmic involvement-- and that leads to the inability to control body temperature, thyroid, hormones and all the other stuff that is controlled by the thalmus and pituatary glands.

I do hope that Jake doesn't have NS. There is so little they can do. I see where you said he's taken to crying- out of frustration and I'm sure the hormone meds they have him on for the precocious puberty. I can only imagine what you as mom are going thru. I do hope you have support for yourself also.

We have had only one other Mom come in with a child that had NS. We've not heard from her in quite a while, -- so I'm not sure what's going on there.

I wish i could be more help-- do check out our LINKS and ARCHIVES and there are alot of articles and site links that may be of value to you. Honestly, I think Jake's in a tougher place than most of us. AT least as adults- it's a tiny bit easier to accept what is going on--even when you're not sure what is going on.

Blessings to you, and to Jake,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi Tracie

Thank you very much for your reply yes I do do know abut the HHugs

group as I have been a memeber for the last few years off and on I

suppose I go on there now and then to see what is going on as Jake

only has the PP side of HH they don't really want to get to involved

have sent a few post there way but never much reply oh well. 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.

Sorry if I lead you to believe other wise.... Jake is a happy go

luckly young man full of fun and mischief if you know what I mean, he

can wined me up to know end a reall smart arse at times mind my

French. I don't mean to sound alful but he really is just a normal 9

year old he plays soccer, is in love with his PS2 but on the other

token he is a well mannered little man who cares for people he has

such a wounderful soul and is such a brave wee man also... Thank you

once again for your time and your information an d will keep checking

out your site... I pray to God Jake does not have this.

Take care

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

[Guest guest]

Hi Tracie

Thank you very much for your reply yes I do do know abut the HHugs

group as I have been a memeber for the last few years off and on I

suppose I go on there now and then to see what is going on as Jake

only has the PP side of HH they don't really want to get to involved

have sent a few post there way but never much reply oh well. 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.

Sorry if I lead you to believe other wise.... Jake is a happy go

luckly young man full of fun and mischief if you know what I mean, he

can wined me up to know end a reall smart arse at times mind my

French. I don't mean to sound alful but he really is just a normal 9

year old he plays soccer, is in love with his PS2 but on the other

token he is a well mannered little man who cares for people he has

such a wounderful soul and is such a brave wee man also... Thank you

once again for your time and your information an d will keep checking

out your site... I pray to God Jake does not have this.

Take care

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

[Guest guest]

Hi Tracie

Thank you very much for your reply yes I do do know abut the HHugs

group as I have been a memeber for the last few years off and on I

suppose I go on there now and then to see what is going on as Jake

only has the PP side of HH they don't really want to get to involved

have sent a few post there way but never much reply oh well. 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.

Sorry if I lead you to believe other wise.... Jake is a happy go

luckly young man full of fun and mischief if you know what I mean, he

can wined me up to know end a reall smart arse at times mind my

French. I don't mean to sound alful but he really is just a normal 9

year old he plays soccer, is in love with his PS2 but on the other

token he is a well mannered little man who cares for people he has

such a wounderful soul and is such a brave wee man also... Thank you

once again for your time and your information an d will keep checking

out your site... I pray to God Jake does not have this.

Take care

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

[Guest guest]

Moana, I am another of the group. I'm so sorry that your little fella is not well right now, my prayers and best wishes are with you both/////Connie jakekellywaldron wrote: Hi TracieThank you very much for your reply yes I do do know abut the HHugs group as I have been a memeber for the last few years off and on I suppose I go on there now and then to see what is going on as Jake only has the PP side of HH they don't really want to get to

involved have sent a few post there way but never much reply oh well. 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. Sorry if I lead you to believe other wise.... Jake is a happy go luckly young man full of fun and mischief if you know what I mean, he can wined me up to know end a reall smart arse at times mind my French. I don't mean to sound alful but he really is just a normal 9 year old he plays soccer, is in love with his PS2 but on the other token he is a well mannered little man who cares for people he has such a wounderful soul and is such a brave wee man also... Thank you once again for your time and your information an d will keep checking out your site... I pray to God Jake does not have this.Take care Moana Waldron (mum to Jake 9, Bethany 7, and Abigail 1)

Sneak preview the all-new Yahoo.com. It's not radically different. Just radically better.

[Guest guest]

Moana, I am another of the group. I'm so sorry that your little fella is not well right now, my prayers and best wishes are with you both/////Connie jakekellywaldron wrote: Hi TracieThank you very much for your reply yes I do do know abut the HHugs group as I have been a memeber for the last few years off and on I suppose I go on there now and then to see what is going on as Jake only has the PP side of HH they don't really want to get to

involved have sent a few post there way but never much reply oh well. 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. Sorry if I lead you to believe other wise.... Jake is a happy go luckly young man full of fun and mischief if you know what I mean, he can wined me up to know end a reall smart arse at times mind my French. I don't mean to sound alful but he really is just a normal 9 year old he plays soccer, is in love with his PS2 but on the other token he is a well mannered little man who cares for people he has such a wounderful soul and is such a brave wee man also... Thank you once again for your time and your information an d will keep checking out your site... I pray to God Jake does not have this.Take care Moana Waldron (mum to Jake 9, Bethany 7, and Abigail 1)

Sneak preview the all-new Yahoo.com. It's not radically different. Just radically better.

[Guest guest]

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]

Thank you Connie for your kind thoughts

Moana Waldron

Re: Re: My Son Jake

Moana,

I am another of the group. I'm so sorry that your little fella is not well right now, my prayers and best wishes are with you both/////Connie jakekellywaldron wrote:

Hi TracieThank you very much for your reply yes I do do know abut the HHugs group as I have been a memeber for the last few years off and on I suppose I go on there now and then to see what is going on as Jake only has the PP side of HH they don't really want to get to involved have sent a few post there way but never much reply oh well. 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. Sorry if I lead you to believe other wise.... Jake is a happy go luckly young man full of fun and mischief if you know what I mean, he can wined me up to know end a reall smart arse at times mind my French. I don't mean to sound alful but he really is just a normal 9 year old he plays soccer, is in love with his PS2 but on the other token he is a well mannered little man who cares for people he has such a wounderful soul and is such a brave wee man also... Thank you once again for your time and your information an d will keep checking out your site... I pray to God Jake does not have this.Take care Moana Waldron (mum to Jake 9, Bethany 7, and Abigail 1)

;

Sneak preview the all-new Yahoo.com. It's not radically different. Just radically better.

[Guest guest]

Thank you Connie for your kind thoughts

Moana Waldron

Re: Re: My Son Jake

Moana,

I am another of the group. I'm so sorry that your little fella is not well right now, my prayers and best wishes are with you both/////Connie jakekellywaldron wrote:

Hi TracieThank you very much for your reply yes I do do know abut the HHugs group as I have been a memeber for the last few years off and on I suppose I go on there now and then to see what is going on as Jake only has the PP side of HH they don't really want to get to involved have sent a few post there way but never much reply oh well. 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. Sorry if I lead you to believe other wise.... Jake is a happy go luckly young man full of fun and mischief if you know what I mean, he can wined me up to know end a reall smart arse at times mind my French. I don't mean to sound alful but he really is just a normal 9 year old he plays soccer, is in love with his PS2 but on the other token he is a well mannered little man who cares for people he has such a wounderful soul and is such a brave wee man also... Thank you once again for your time and your information an d will keep checking out your site... I pray to God Jake does not have this.Take care Moana Waldron (mum to Jake 9, Bethany 7, and Abigail 1)

;

Sneak preview the all-new Yahoo.com. It's not radically different. Just radically better.

[Guest guest]

Jake had his eyes test about 2 months ago and everything was fine with them but his tumour has grown 2mmx1mm in the last year on his eyes so I am just thinking out aloud that my be the tumour is growing I will be in contact with his doctors in the next week or so with the results from his blood for Neurosarcoidosis. So I will be let them know what is going on I am sure they will say just wait and see his next appointment for his eyes will be on 16-10-06 . Thank you for getting back to me

God bless

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]

Jake had his eyes test about 2 months ago and everything was fine with them but his tumour has grown 2mmx1mm in the last year on his eyes so I am just thinking out aloud that my be the tumour is growing I will be in contact with his doctors in the next week or so with the results from his blood for Neurosarcoidosis. So I will be let them know what is going on I am sure they will say just wait and see his next appointment for his eyes will be on 16-10-06 . Thank you for getting back to me

God bless

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]

Jake had his eyes test about 2 months ago and everything was fine with them but his tumour has grown 2mmx1mm in the last year on his eyes so I am just thinking out aloud that my be the tumour is growing I will be in contact with his doctors in the next week or so with the results from his blood for Neurosarcoidosis. So I will be let them know what is going on I am sure they will say just wait and see his next appointment for his eyes will be on 16-10-06 . Thank you for getting back to me

God bless

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, I hope you don't mind the card, my children and grandchildren love to get mail or email. ///ConnieShane & Moana Waldron wrote: Thank you Connie for your kind thoughts Moana Waldron Re: Re: My Son Jake Moana, I am another of the group. I'm so sorry that your little fella is not well right now, my prayers and best wishes are with you both/////Connie jakekellywaldron wrote: Hi TracieThank you very much for your reply yes I do do know abut the HHugs group as I have been a memeber for the last few years off and on I suppose I go on there now and then to see what is going on as Jake only has the PP side of HH they don't really want to get to involved have sent a few post there way but never much reply oh well. 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. Sorry if I lead you to believe other wise.... Jake is a happy go luckly young man full of fun and mischief if you know what I mean, he can wined me up to know end a reall smart arse at times mind my French. I don't mean to sound alful but he really is just a normal 9 year old he plays soccer, is in love with his PS2 but on the other token he is a well mannered little man who cares for people he has such a wounderful soul and is such

a brave wee man also... Thank you once again for your time and your information an d will keep checking out your site... I pray to God Jake does not have this.Take care Moana Waldron (mum to Jake 9, Bethany 7, and Abigail 1) ; Sneak preview the all-new Yahoo.com. It's not radically different. Just radically better.

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Moana, I hope you don't mind the card, my children and grandchildren love to get mail or email. ///ConnieShane & Moana Waldron wrote: Thank you Connie for your kind thoughts Moana Waldron Re: Re: My Son Jake Moana, I am another of the group. I'm so sorry that your little fella is not well right now, my prayers and best wishes are with you both/////Connie jakekellywaldron wrote: Hi TracieThank you very much for your reply yes I do do know abut the HHugs group as I have been a memeber for the last few years off and on I suppose I go on there now and then to see what is going on as Jake only has the PP side of HH they don't really want to get to involved have sent a few post there way but never much reply oh well. 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. Sorry if I lead you to believe other wise.... Jake is a happy go luckly young man full of fun and mischief if you know what I mean, he can wined me up to know end a reall smart arse at times mind my French. I don't mean to sound alful but he really is just a normal 9 year old he plays soccer, is in love with his PS2 but on the other token he is a well mannered little man who cares for people he has such a wounderful soul and is such

a brave wee man also... Thank you once again for your time and your information an d will keep checking out your site... I pray to God Jake does not have this.Take care Moana Waldron (mum to Jake 9, Bethany 7, and Abigail 1) ; Sneak preview the all-new Yahoo.com. It's not radically different. Just radically better.

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Moana, I hope you don't mind the card, my children and grandchildren love to get mail or email. ///ConnieShane & Moana Waldron wrote: Thank you Connie for your kind thoughts Moana Waldron Re: Re: My Son Jake Moana, I am another of the group. I'm so sorry that your little fella is not well right now, my prayers and best wishes are with you both/////Connie jakekellywaldron wrote: Hi TracieThank you very much for your reply yes I do do know abut the HHugs group as I have been a memeber for the last few years off and on I suppose I go on there now and then to see what is going on as Jake only has the PP side of HH they don't really want to get to involved have sent a few post there way but never much reply oh well. 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. Sorry if I lead you to believe other wise.... Jake is a happy go luckly young man full of fun and mischief if you know what I mean, he can wined me up to know end a reall smart arse at times mind my French. I don't mean to sound alful but he really is just a normal 9 year old he plays soccer, is in love with his PS2 but on the other token he is a well mannered little man who cares for people he has such a wounderful soul and is such

a brave wee man also... Thank you once again for your time and your information an d will keep checking out your site... I pray to God Jake does not have this.Take care Moana Waldron (mum to Jake 9, Bethany 7, and Abigail 1) ; Sneak preview the all-new Yahoo.com. It's not radically different. Just radically better.

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Hi

Moana,

I have

only heard your name twice, such a pretty name, one of my husband’s staff

members is Moana and she is just wonderful. I am sorry to hear your son has so

much to deal with, as you do too. I have a great niece with Juvenile Rheumatoid

Arthritis, she is only 3 and was dx about a year ago, she is in a lot of pain, and

the doctors asked if there was any one in the family with any type of

autoimmune dx. I was very close to this niece (her mom) when she was growing

up, and I feel so bad that she has a little one with so much pain, as with you I

know it must be difficult, and my thoughts and prayers are with you and your

family. I have NeuroSarcoidosis have had for 12 years now, my Mother has

Sarcoid, so far very few problems, and I have two cousins (third cousins) in Oslo, Norway

with Sarcoid with many problems.

This is

a great group to ask questions, or just let out your frustration or whatever

you need. We are a loving family here to support each other.

Again, I

will keep you and your family in my prayers.

Marla

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

Sent: Wednesday, July 05, 2006

11:47 PM

To: Neurosarcoidosis

Subject: Re:

Re: My Son Jake

Jake had his eyes test about 2 months ago and everything was

fine with them but his tumour has grown 2mmx1mm in the last year on his eyes so

I am just thinking out aloud that my be the tumour is growing I will be in

contact with his doctors in the next week or so with the results from his blood

for Neurosarcoidosis. So I will be let them know what is going on I am

sure they will say just wait and see his next appointment for his eyes will be

on 16-10-06 . Thank you for getting back to me

God bless

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]

Thank you Marla for your reply still waiting for results from doctor for Jake.

Thanks 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 Marla for your reply still waiting for results from doctor for Jake.

Thanks 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 Marla for your reply still waiting for results from doctor for Jake.

Thanks 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, 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]

Hang in

there Moana, this is the most difficult time, about 3 years ago when the sarc

went neuro on me, I spent most of my time driving 50 miles one way every week,

sometimes twice a week doing tests and seeing different doctors, but in the end

it paid off, I am much better now then I was then.

Marla

From:

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

Sent: Sunday, July 09, 2006 11:18

PM

To:

Neurosarcoidosis

Subject: Re:

Re: My Son Jake

Thank you Marla for your reply still waiting for results

from doctor for Jake.

Thanks 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]

Hang in

there Moana, this is the most difficult time, about 3 years ago when the sarc

went neuro on me, I spent most of my time driving 50 miles one way every week,

sometimes twice a week doing tests and seeing different doctors, but in the end

it paid off, I am much better now then I was then.

Marla

From:

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

Sent: Sunday, July 09, 2006 11:18

PM

To:

Neurosarcoidosis

Subject: Re:

Re: My Son Jake

Thank you Marla for your reply still waiting for results

from doctor for Jake.

Thanks 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]

Hang in

there Moana, this is the most difficult time, about 3 years ago when the sarc

went neuro on me, I spent most of my time driving 50 miles one way every week,

sometimes twice a week doing tests and seeing different doctors, but in the end

it paid off, I am much better now then I was then.

Marla

From:

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

Sent: Sunday, July 09, 2006 11:18

PM

To:

Neurosarcoidosis

Subject: Re:

Re: My Son Jake

Thank you Marla for your reply still waiting for results

from doctor for Jake.

Thanks 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