Re: New, Information needed

[Guest guest]

Hi ,

I am so sorry your son is ill. It's hard enough being an adult and being sick,

but for anythng to strike our kids.. my heart goes out to both of you. Yes,

sarcoidosis does appear in kids. Generally, it's the lungs that are effected,

but it does have that systemic inflammation (which is what the ACE tests show).

Sadly, there is no specific test that confirms sarcoidosis, and unless they find

a spot that they can biopsy, then what happens is that they have to rule out all

the other auto-immune diseases, and when they've proved that it's not one of the

others--Lupus, Diabetes, Rheumatoid Arthritis, Chron's-- etc. then they are left

with NS.

It sounds like they've not put him on any medication and I'm sure they'll

eventually want him on high dose prednisone to get the inflammation down

quickly. They will wait to do that until they know what they are treating.

I don't have much info on sarc with kids-- you may want to search with juvenille

sarcoidosis and see what you can come up with. Dr. Om Sharma in Los Angeles, CA

USC-LA is excellant, and you can email him. His site is www.sarcoidsharma.com

and he is wonderful. Also, Dr. Baughman in Ohio is the other specialist

in sarc. These two MD's are the top 2 in the nation-- so do contact them.

My prayers go out to you both,

Sincerely,

Tracie

NS Co-owner/moderator

New, Information needed

Hello,

I am wondering if anyone has ever been in this situation. My son (aged 9) has

been ill for

almost a whole year. His docotrs have just now begun to explore the

possibility of

sarcoidosis. Do children get this disease????

Briefly, he was diagnosed with arthritis early September but became increasingly

unwell

over the following months. He has had some very disturbing neurological

symptoms --

loss of balance, loss of strength in his arms, incontinence, unable to do finger

- nose test,

unable to sit up without falling over.

He has peculiar swellings on his face that no one has been able to identify

(extremely

tender).

The doctors have just tested his ACE levels recently and have repeated the test

several

times. Each time, the ACE levles are elevated. Obviously, this is making them

think about

sarcoidosis. They had written off all his neuro symptoms as psychological until

his

brainstem auditory evoked response test came back as very abnormal (repeated

twice with

same results). He has a headache all day every day.

If any of this rings a bell with anyone, please let me know. Deesperately

trying to help my

son,

------------------------------------

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME

CHATROOM LINK: http://www.emxpc.net/chat/index.php

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hi ,

I am so sorry your son is ill. It's hard enough being an adult and being sick,

but for anythng to strike our kids.. my heart goes out to both of you. Yes,

sarcoidosis does appear in kids. Generally, it's the lungs that are effected,

but it does have that systemic inflammation (which is what the ACE tests show).

Sadly, there is no specific test that confirms sarcoidosis, and unless they find

a spot that they can biopsy, then what happens is that they have to rule out all

the other auto-immune diseases, and when they've proved that it's not one of the

others--Lupus, Diabetes, Rheumatoid Arthritis, Chron's-- etc. then they are left

with NS.

It sounds like they've not put him on any medication and I'm sure they'll

eventually want him on high dose prednisone to get the inflammation down

quickly. They will wait to do that until they know what they are treating.

I don't have much info on sarc with kids-- you may want to search with juvenille

sarcoidosis and see what you can come up with. Dr. Om Sharma in Los Angeles, CA

USC-LA is excellant, and you can email him. His site is www.sarcoidsharma.com

and he is wonderful. Also, Dr. Baughman in Ohio is the other specialist

in sarc. These two MD's are the top 2 in the nation-- so do contact them.

My prayers go out to you both,

Sincerely,

Tracie

NS Co-owner/moderator

New, Information needed

Hello,

I am wondering if anyone has ever been in this situation. My son (aged 9) has

been ill for

almost a whole year. His docotrs have just now begun to explore the

possibility of

sarcoidosis. Do children get this disease????

Briefly, he was diagnosed with arthritis early September but became increasingly

unwell

over the following months. He has had some very disturbing neurological

symptoms --

loss of balance, loss of strength in his arms, incontinence, unable to do finger

- nose test,

unable to sit up without falling over.

He has peculiar swellings on his face that no one has been able to identify

(extremely

tender).

The doctors have just tested his ACE levels recently and have repeated the test

several

times. Each time, the ACE levles are elevated. Obviously, this is making them

think about

sarcoidosis. They had written off all his neuro symptoms as psychological until

his

brainstem auditory evoked response test came back as very abnormal (repeated

twice with

same results). He has a headache all day every day.

If any of this rings a bell with anyone, please let me know. Deesperately

trying to help my

son,

------------------------------------

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME

CHATROOM LINK: http://www.emxpc.net/chat/index.php

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

, I'm sorry to hear your son is dealing with this pain, and it's must be hard on you, as it's always worse for a Mom. Many of these symptoms do sound familiar, the pain, the elevated ACE level, the balance, etc. I would ask your Dr. to investigate Neurosarcoidosis, and then treat him with drugs that help this disease, Steroids, Metotrexate, Plaquanil, some are not for use in kids, but some are. I have a niece with JRA, and she was diagnosed at 3. Sounds like Sarcoid is something the doctor should be investigating. we are here to help you in any way, answer questions, or just listen to. You have found a wonder group of fellow Sarcoidians, Welcome. Marla

Hello,

I am wondering if anyone has ever been in this situation. My son (aged 9) has been ill for

almost a whole year. His docotrs have just now begun to explore the possibility of

sarcoidosis. Do children get this disease????

Briefly, he was diagnosed with arthritis early September but became increasingly unwell

over the following months. He has had some very disturbing neurological symptoms --

loss of balance, loss of strength in his arms, incontinence, unable to do finger - nose test,

unable to sit up without falling over.

He has peculiar swellings on his face that no one has been able to identify (extremely

tender).

The doctors have just tested his ACE levels recently and have repeated the test several

times. Each time, the ACE levles are elevated. Obviously, this is making them think about

sarcoidosis. They had written off all his neuro symptoms as psychological until his

brainstem auditory evoked response test came back as very abnormal (repeated twice with

same results). He has a headache all day every day.

If any of this rings a bell with anyone, please let me know. Deesperately trying to help my

son,

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

, I'm sorry to hear your son is dealing with this pain, and it's must be hard on you, as it's always worse for a Mom. Many of these symptoms do sound familiar, the pain, the elevated ACE level, the balance, etc. I would ask your Dr. to investigate Neurosarcoidosis, and then treat him with drugs that help this disease, Steroids, Metotrexate, Plaquanil, some are not for use in kids, but some are. I have a niece with JRA, and she was diagnosed at 3. Sounds like Sarcoid is something the doctor should be investigating. we are here to help you in any way, answer questions, or just listen to. You have found a wonder group of fellow Sarcoidians, Welcome. Marla

Hello,

I am wondering if anyone has ever been in this situation. My son (aged 9) has been ill for

almost a whole year. His docotrs have just now begun to explore the possibility of

sarcoidosis. Do children get this disease????

Briefly, he was diagnosed with arthritis early September but became increasingly unwell

over the following months. He has had some very disturbing neurological symptoms --

loss of balance, loss of strength in his arms, incontinence, unable to do finger - nose test,

unable to sit up without falling over.

He has peculiar swellings on his face that no one has been able to identify (extremely

tender).

The doctors have just tested his ACE levels recently and have repeated the test several

times. Each time, the ACE levles are elevated. Obviously, this is making them think about

sarcoidosis. They had written off all his neuro symptoms as psychological until his

brainstem auditory evoked response test came back as very abnormal (repeated twice with

same results). He has a headache all day every day.

If any of this rings a bell with anyone, please let me know. Deesperately trying to help my

son,

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

,

I have heard of a 5 year old girl up North who had neurosarcoidosis.

She was first diagnosed with sarcoid then of course she started to have

the neurological symptoms.

I have had great success with using my rheumatologist and not my

neurologist so the question is, has your son seen a pediatric

rheumatologist? Are you near a teaching hospital? Get as many opinions

as you can. Everyone thinks that Dr.'s can figure out every diagnosis

in a short period of time. This is not true. Don't be discouraged. Be

your son's advocate and ask questions.

Let us know if you need anything else.

Terro G.

>

> Hello,

>

> I am wondering if anyone has ever been in this situation. My son (aged

9) has been ill for

> almost a whole year. His docotrs have just now begun to explore the

possibility of

> sarcoidosis. Do children get this disease????

>

> Briefly, he was diagnosed with arthritis early September but became

increasingly unwell

> over the following months. He has had some very disturbing

neurological symptoms --

> loss of balance, loss of strength in his arms, incontinence, unable to

do finger - nose test,

> unable to sit up without falling over.

>

> He has peculiar swellings on his face that no one has been able to

identify (extremely

> tender).

>

> The doctors have just tested his ACE levels recently and have repeated

the test several

> times. Each time, the ACE levles are elevated. Obviously, this is

making them think about

> sarcoidosis. They had written off all his neuro symptoms as

psychological until his

> brainstem auditory evoked response test came back as very abnormal

(repeated twice with

> same results). He has a headache all day every day.

>

> If any of this rings a bell with anyone, please let me know.

Deesperately trying to help my

> son,

>

>

[Guest guest]

,

I have heard of a 5 year old girl up North who had neurosarcoidosis.

She was first diagnosed with sarcoid then of course she started to have

the neurological symptoms.

I have had great success with using my rheumatologist and not my

neurologist so the question is, has your son seen a pediatric

rheumatologist? Are you near a teaching hospital? Get as many opinions

as you can. Everyone thinks that Dr.'s can figure out every diagnosis

in a short period of time. This is not true. Don't be discouraged. Be

your son's advocate and ask questions.

Let us know if you need anything else.

Terro G.

>

> Hello,

>

> I am wondering if anyone has ever been in this situation. My son (aged

9) has been ill for

> almost a whole year. His docotrs have just now begun to explore the

possibility of

> sarcoidosis. Do children get this disease????

>

> Briefly, he was diagnosed with arthritis early September but became

increasingly unwell

> over the following months. He has had some very disturbing

neurological symptoms --

> loss of balance, loss of strength in his arms, incontinence, unable to

do finger - nose test,

> unable to sit up without falling over.

>

> He has peculiar swellings on his face that no one has been able to

identify (extremely

> tender).

>

> The doctors have just tested his ACE levels recently and have repeated

the test several

> times. Each time, the ACE levles are elevated. Obviously, this is

making them think about

> sarcoidosis. They had written off all his neuro symptoms as

psychological until his

> brainstem auditory evoked response test came back as very abnormal

(repeated twice with

> same results). He has a headache all day every day.

>

> If any of this rings a bell with anyone, please let me know.

Deesperately trying to help my

> son,

>

>

[Guest guest]

Dear , I am so sorry that you are in such a hard situation. Don't give up. Keep pressing on and know that we are praying. I don't know what is wrong with your son and I am praying they find out soon. One of my sons was really sick for a long time before the doctors figured out that he had an extremely rare disease. If the doctors blow you off or dont believe you, keep pushing or find other doctors. I will be praying for strength for you too! Hang in there and email me any time you want to. Please let us know how you are and what you find out. God bless you! Cathyashdownhill wrote: Hello,I am wondering if anyone has ever been in this situation. My son (aged 9) has been ill for almost a whole year. His docotrs have just now begun to explore the possibility of sarcoidosis. Do children get this disease????Briefly, he was diagnosed with arthritis early September but became increasingly unwell over the following months. He has had some very disturbing neurological symptoms -- loss of balance, loss of strength in his arms, incontinence, unable to do finger - nose test, unable to sit up without falling over. He has peculiar swellings on his face that no one has been able to identify (extremely tender).The doctors have just tested his ACE levels recently and have repeated the test several times. Each time, the ACE levles are elevated. Obviously, this is making them think

about sarcoidosis. They had written off all his neuro symptoms as psychological until his brainstem auditory evoked response test came back as very abnormal (repeated twice with same results). He has a headache all day every day.If any of this rings a bell with anyone, please let me know. Deesperately trying to help my son,