Re: new to this

[Guest guest]

Hi! Your Noah sounds a lot like my 3-1/2 year old,

Dallas...especially the part about the computer games.

At any rate, I think every child on the autism spectrum should TRY

the diet. It is one of those things that can't hurt and it very well

might help. My son is a cereal and milk freak too. We substituted

originally with Silk vanilla soy milk and then went on to rice milk

when we thought he was having problems with soy. He took both with

no problems. As for the cereal, rice crunch ems, gorilla munch and

peanut butter panda puffs are now standard. I would start

slowly...remove milk today, replacing this first, then remove all

other casein, then removing wheat products and then all other

glutens. www.gfcfdiet.com is an excellent resource. Ask lots of

questions and give it a try. It made a huge difference in my child

and in many others. Feel free to email me anytime. Good luck!

> Hello,

>

> My 3 year old son Noah was recently diagnosed with Autism,

I

> had my suspicions and now they have been confirmed as of August 23,

> 2001. I am trying to learn as much as possible and learn any type

of

> ways that Noah may benefit, I knew very little of what Gluten was

so

> looked up some info, and I am sure all of you can help me out some

> more, since my doctors here in Oklahoma have left me with many

> questions. First of all I am not sure how to even get started. If

> Noah would benefit from this diet then I am ready to begin. From

what

> I read he may be a good canidate, Let me describe him and I am up

for

> any and all suggestions, Okay, let's see he has been diagnosed

with

> a mild case of Autism, He is learning to say 3 and sometimes 4 word

> sentences. It seems like every day he is talking more, he does

repeat

> himself, he does alot of stemming with his arms (arm flapping) when

> he is excited. he loves the computer and can turn it on and get his

> learning games on by himself. He has an excellent memory on where

> places are etc. he has problems sleeping, seems constipated alot,

and

> is not potty trained. He loves MILK and CEREAL!!! He gets excited

> when you say " let's go to church and you can play with the other

> kids " it is like he wants to but when he is faced with the

situation

> he just doesn't know what to do. He is very affectionate especially

> to me, and he knows when people are crying they are sad. I am

> wandering how to go about If Noah would be a good canidate for this

> diet, should I even ask his doctor? If his doctor didn't suggest

it,

> I am assuming the doctor doesn't know??? I will go now, and if you

> have gotten this far (read all of this) God Bless You!!! and I am

> open for all your advice!!!THANK YOU!!!!!!!

[Guest guest]

Hi,

NT means neuro typical(normal) and DS means down syndrome and/or

something else.....?

I am pretty new at this, too, and understand your panick about your

child not having any options, you running out of gfcf food, etc... I

had that panicky feeling for about 2 weeks and then with the help of

this group I got past that. I am only 2 mos into this gfcf diet and

can't believe how much easier it is getting. It's really hard at

first-as you know-but quickly gets easier. Then you can tackle other

issues that you have on your list! AGHHH!!!!

Janelle

Jane 2 1/2 PDD-NOS Who, apparently, survived Day 1 of Mother's Day

Out from 9-2!!! She'll only go once a week, but oooohhh what a break!!

1 NT My Little Guy Who Rolls With the Punches(unfortunately

that can be taken literally with regards to his sister)

[Guest guest]

Hi Dakota,

I am Greg and I am 45 years old I was diagnosed With Neurosarcoidosis 8 May 2008

and has flared u twice. And one the times lost memory. I am Prednisone right now

AT 20mg started in th Hospital on a dripp of prednisone. Prednisone does work

good but it it side effects really s---- Bad. I have doctors trying to get me on

Remicade or humria either one I think will be better. If you are on prednisone

you need to start checking your blood sugar regularely cause it can make you

diabetic. I am Pre Diabetic at this time due to Prednisone usage. I am

controlling my blood sugar thru deit and exersice. I am having troubles right

now with balance and memory.

Dakota if you any more questions feel free to ask. People here will answer as

best that can. And the moderators are great at giving links to advice and

answers. Good luck to you Dakota.

Greg aka Krumdawg

>

> Hi im dakota im 23 i was just givein the news of nero sarcoid. i have been

sick for a while but it took the most recent time when i went blind in my right

eye to catch it. i did restore my sight with streiods but there are good days

and bad days. the docs say this is rare type of sarcoid i have cuse it only

affects the brain nowere else and it started there. any one out there got any

advice for day to day living it wolud be apprecated.

>

>

> Thanks

> Dakota

>

[Guest guest]

Welcome Dakota.. sorry we must meet this way. but you have found a wonderful family here, we are here for each other, through good times and bad. I have NS also. In the brain. spinal cord,liver,spleen,R/adrenal gland.lungs.. what else is there lol When you have NS it is a very rare part sarcoid, but NS in part consists of the central nervious system. than it affects other organs.I have NS in all those organs but my Brain is the one affected the most. I have a lesion in the left lobe. I have many symtoms but the severe head pain and nerve pain is my worst part. are you on any medications and were are you located.

Welcome and do not be afraid to ask to many questions.

Many Blessings A.

Hi im dakota im 23 i was just givein the news of nero sarcoid. i have been sick for a while but it took the most recent time when i went blind in my right eye to catch it. i did restore my sight with streiods but there are good days and bad days. the docs say this is rare type of sarcoid i have cuse it only affects the brain nowere else and it started there. any one out there got any advice for day to day living it wolud be apprecated.ThanksDakota

Dell Days of Deals! June 15-24 - A New Deal Everyday!

[Guest guest]

Hi, Dakota. As others have said, it's a shame you had to find us, but I think you'll be glad you did. Neurosarcoidosis can refer to just the CNS (central nervous system/brain) or the peripheral nervous system--spine, outer nerves, including nerves in the skin. I've had CNS (several cranial nerves) and peripheral neuropathy (numbness & pain in my feet & hands). Sarc commonly affects the eyes--either directly (such as uveitis), nerve damage, or other ways. Do you know how the sarc caused your vision loss? One suggestion I have is to begin keeping a symptom diary & taking it with you to the doctor visits. I keep mine on the computer & update periodically, keeping all the previous notes. That way I can look back & see when certain problems began or worsened. I sure can't rely on my memory. Record everything different, even if it seems minor. The nerve damage in my feet started with feeling like I had tape stuck on the bottoms of my feet, just small spots that came & went. That progressed to larger & longer areas or numbness, then burning, that sharp pain like little knives in my feet, then to feeling like my feet were going to explode, etc. Another suggestion is to take someone with you to doctor appts. They don't have to have medical experience, but need to be assertive & willing to keep that doctor in that room until you have gotten all your questions answered. Often when you get info, especially scary news, you can't take it all in, and may not remember most of what you do take in. Many of us have taken tape recorders to appts, especially with a specialist, or when you have many questions. I've never had a doctor balk at recording the visit. At the bottom of each group message, including this one, are Links, Message Archives, etc. You can scan through those resources. Two excellent online resources are www.stopsarcoidosis.org by FSR (The Foundation for Sarcoidosis Research) and--oh, shoot, I can't think of the other one! Well, this should get you started & we'll give you some more resources in the next few days. Sorry about that! I know this is a long message, and it's about to get longer. Tracie, one of our owners, explains sarcoidosis very well, along with the latest treatment options. I'm including one of her explanations, because it's important that you not just rely on Prednisone/other steroids, especially for NS. Let us know where you live, where you are getting care, what type of doctors you've seen, etc. Sarc, esp. NS, is a scary chronic disease, but most people find that it's manageable with knowledge & lots of support. You'll get both of those here. For right now, try to take some deep breaths several times a day, quiet your mind & consciously relax your muscles. Drink some warm tea (decaf!) for sleep, try to eat well, and know that you are not alone. Here is Tracie's sarc info:

Sarcoidosis is an autoimmune disease. What that means is that your body can't make the distinction between what is healthy tissue and what needs to be healed-- like a cut. The scientists don't know what causes sarcoidosis, or how to cure it.

It is a disease where our immune system sends out white cells to take care of an infection, then our immune system follows up with TNF-a and TNF-b cells. Each one cleans out the process of the previous one.

For some reason, we don't clean out the old cells, and the followers end up building one on top of the other-- and form granulomas.

For most people, they may never know they have sarcoidosis. However, for many of us, we end up with it in our lungs-- and may have been going to the doctors for respiratory infections for a very long time. Finally, someone orders a chest xray, and there is the "etched glass" look -- a sign of sarcoidosis.

There are multiple stages of sarcoidosis-- Stage 1-- is where you have some minor infections, but a short dose of prednisone or solu-medrol, generally gets it's under control. You may have some intermittent periods of shortness of breath, and your docs, as well as you yourself, will blow it off as seasonal allergies, or maybe mild asthma.

Stage 2-- You've started having more problems being short of breath, and maybe more intense repiratory infections-- and you may have some lymph pain around your chest. It's become a more common problem, without many breaks between treatment. There is minor scarring of the lung tissue, and this makes it harder to get air across the lung tissue where it's picked up by the red blood cells and taken as oxygen to your body. Fatigue is starting to become an issue.

Stage 3- Pulmonary function tests start showing a problem with DLCO--Diffuse Lung Capacity Oxygenation--- as your lungs are now scarring (much the same as pulmonary fibrosis) and you have a tendency to not be able to get the bad air (carbon dioxide) out of your lungs unless you learn to REALLY FULLY EXHALE and blow that air out. You may have some numbness in your hands and feet-- as your body needs the oxygen to keep the vital organs alive, so it cuts back the amount that goes out to your extremities. You may need supplemental oxygen during exertion.

Stage IV. You have significant scarring, lung capacity has dropped down (ie. mine is 64% of normal) and you will need supplemental oxygen full time. This level gets trickier, and you may develop pulmonary hypertension where the heart demands more oxygen than the lungs can provide-- and eventually the huge vessel that goes from the lungs to the heart has to thicken to hold the extra blood pressure. As it thickens, it narrows from the inside, and this can put you at high risk for a blood clot either in the lungs or heart. (I've been in Stage 4 for 8 yrs now and yes, I do have pulm hypertension.)

Normal healthy lungs look like your new kitchen sponge-- and with sarcoidosis, ours beging to look like the sponge needs to be tossed out, as the cell membranes tear or fibrose (scar) over. Mine look like the sponge that is falling apart, and so old that it can't absorb much-- I've only got 2 (out of 5) healthy sections left.

Sarcoidosis can affect any organ. Lungs, eyes (iritis or uveitis), liver, kidneys, muscles, joints, ligaments, bones, heart, nerves, -- it doesn't care. Somehow, the signal got sent that there was a problem, the immune system kicked into hyperdrive, and even if the problem has long gone, your immune system isn't shutting down to normal.

Fatigue-- not "I've had a long day" fatigue, but exhaustion that will make you feel like that one time you had pneumonia as a kid was a calkwalk- fatigue; is huge. Body aches and pains--- the docs will tell you it's fibromyalgia, or arthritis, or chronic fatigue syndrome-- (and it may be) but it doesn't let up.

Sarcoidosis loves our hands and feet and ankles. It is a form of sarcoid-induced arthritis, and anti-inflammatories do help.

This disease mimics Multiple Scleroisis, Rheumatoid Arthritis, Peripheral Neuropathy, Dementia (neurosarcoidosis), Fibromyalgia, Chronic Fatigue, all wrapped into one.

Most people do not get sarcoidosis to that extent-- and for those of us that do- we will be needing to learn to pace ourself, rest when the body dictates, take multiple anti-inflammatories, and immune suppressants. Generally the docs start you off with high dose prednisone, and then as they wean you off- and your symptoms return, they need to add a different immunosuppressant-- Ie. Imuran, Arava, Methotrexate, Plaquenil, or the bigger guns-- Humira, Enbrel, Cellcept, Remicade.

It is important to start with the least offensive, and add or adjust as needed-- one at a time. That way, if you've got any side effects from the meds, they can figure out what is causing it.

Hope this helps,

Tracie

NS Co-owner/moderator

Ramblin' RoseModerator Bing™ brings you maps, menus, and reviews organized in one place. Try it now.

[Guest guest]

Hey Dakota

I am Jackie and I have NS. It is in my brain/nervous system. It has

affected my right side mostly and from the waist down my left side. I was

told the scary news in 06. They didn't know anything about NS up here in

Wisconsin. I have a neuro and a Rumatoligist along with my pcp. I don't

know if or even what is normal with this monster. I went from not being able

to move anything to where I am right now. I can walk, but not far. I

drive, and take care of myself. I start school on July first and am looking

forward to it. I am 58 and was very active until this came about. I was a

CNA and a motorcycle mama. lol The meds that I take are plenty. I do take

prednisone, methotrexate, and plaqunil. The drs. here are surprised how far

I have come. I am a sassy stubborn lady and I am not going to let this get

me down. I hope you have that same attitude. Each case is different so I

guess we can only tell you how we are reacting to the NS.

I am so sorry you have to meet us that way but as said this is a

loving family. We have good laughs and cries. we listen to and rant and

complain. We all understand so please feel free to show your anger and

fright. any and all of us will listen.

Oh yes I am lucky I am not in pain just muscle aches from trying to improve

my walking. I can handle that. Sorry I ramble.

Luck and prayers are with you.

Jackie

new to this

> Hi im dakota im 23 i was just givein the news of nero sarcoid. i have

> been sick for a while but it took the most recent time when i went blind

> in my right eye to catch it. i did restore my sight with streiods but

> there are good days and bad days. the docs say this is rare type of

> sarcoid i have cuse it only affects the brain nowere else and it started

> there. any one out there got any advice for day to day living it wolud be

> apprecated.

>

>

> Thanks

> Dakota

>

>

>

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

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

>

> CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time.....

>

> 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]

Dakota, Welcome, I'm sorry you have to deal with NS, but you will find a wealth of information here, there are many members, but like you so many of us are ill, and we try to get to the emails

when we feel good.  I did not start with just NS, but there might be some here that did.  I started in the lungs, progressed to skin, then NS. I just take each day one day at a time, I find what works for me, is not to schedule anything

before noon, that way if I have a bad night, or just don't feel good, I can decide if I want to cancel for the day, or do it.  I have found this to work really good. That is what I believe most of us do, not the do nothing before noon, but take each day as

it comes.  I don't even know if I will be able to get out of bed tomorrow or not, and some days pop right up.  I am on Remicade, it is helping me a lot!  I was on steroids for 3 years, ouch, I was able to get off them when I went on Methotrexate, then that stop working, thus the Remicade.

Everyone is different, but the least amount of time on steroids the better.  If I have a flare, I still get IV steroids for like 3 days, and that's not so bad.  I hope you find relief, ONE DAY AT A TIME.Blessings,

Marla

Hi im dakota im 23 i was just givein the news of nero sarcoid. i have been sick for a while but it took the most recent time when i went blind in my right eye to catch it. i did restore my sight with streiods but there are good days and bad days. the docs say this is rare type of sarcoid i have cuse it only affects the brain nowere else and it started there. any one out there got any advice for day to day living it wolud be apprecated.

Thanks

Dakota

[Guest guest]

Thank you every one who has replied it helps a lot to know I'm not the only one out there with this. the way the doc had been acting at GW I'm like this med mystery and kinda can be overwhelming. i appreciate the links and the advice i have received thanks so much y'all.Subject: RE: new to thisTo: neurosarcoidosis Date: Thursday, June 18, 2009, 11:11 PM

Hi, Dakota. As others have said, it's a shame you had to find us, but I think you'll be glad you did. Neurosarcoidosis can refer to just the CNS (central nervous system/brain) or the peripheral nervous system--spine, outer nerves, including nerves in the skin. I've had CNS (several cranial nerves) and peripheral neuropathy (numbness & pain in my feet & hands). Sarc commonly affects the eyes--either directly (such as uveitis), nerve damage, or other ways. Do you know how the sarc caused your vision loss? One suggestion I have is to begin keeping a symptom diary & taking it with you to the doctor visits. I keep mine on the computer & update periodically, keeping all the previous notes. That way I can look back & see when certain problems began or worsened. I sure can't rely on my memory. Record everything different, even if it seems minor. The nerve damage in my

feet started with feeling like I had tape stuck on the bottoms of my feet, just small spots that came & went. That progressed to larger & longer areas or numbness, then burning, that sharp pain like little knives in my feet, then to feeling like my feet were going to explode, etc. Another suggestion is to take someone with you to doctor appts. They don't have to have medical experience, but need to be assertive & willing to keep that doctor in that room until you have gotten all your questions answered. Often when you get info, especially scary news, you can't take it all in, and may not remember most of what you do take in. Many of us have taken tape recorders to appts, especially with a specialist, or when you have many questions. I've never had a doctor balk at recording the visit. At the bottom of each group message, including this one, are Links, Message Archives, etc. You can scan

through those resources. Two excellent online resources are www.stopsarcoidosis .org by FSR (The Foundation for Sarcoidosis Research) and--oh, shoot, I can't think of the other one! Well, this should get you started & we'll give you some more resources in the next few days. Sorry about that! I know this is a long message, and it's about to get longer. Tracie, one of our owners, explains sarcoidosis very well, along with the latest treatment options. I'm including one of her explanations, because it's important that you not just rely on Prednisone/other steroids, especially for NS. Let us know where you live, where you are getting care, what type of doctors you've seen, etc. Sarc, esp. NS, is a scary chronic disease, but most people find that it's manageable with knowledge & lots of support. You'll get both of

those here. For right now, try to take some deep breaths several times a day, quiet your mind & consciously relax your muscles. Drink some warm tea (decaf!) for sleep, try to eat well, and know that you are not alone. Here is Tracie's sarc info:

Sarcoidosis is an autoimmune disease. What that means is that your body can't make the distinction between what is healthy tissue and what needs to be healed-- like a cut. The scientists don't know what causes sarcoidosis, or how to cure it.

It is a disease where our immune system sends out white cells to take care of an infection, then our immune system follows up with TNF-a and TNF-b cells. Each one cleans out the process of the previous one.

For some reason, we don't clean out the old cells, and the followers end up building one on top of the other-- and form granulomas.

For most people, they may never know they have sarcoidosis. However, for many of us, we end up with it in our lungs-- and may have been going to the doctors for respiratory infections for a very long time. Finally, someone orders a chest xray, and there is the "etched glass" look -- a sign of sarcoidosis.

There are multiple stages of sarcoidosis- - Stage 1-- is where you have some minor infections, but a short dose of prednisone or solu-medrol, generally gets it's under control. You may have some intermittent periods of shortness of breath, and your docs, as well as you yourself, will blow it off as seasonal allergies, or maybe mild asthma.

Stage 2-- You've started having more problems being short of breath, and maybe more intense repiratory infections-- and you may have some lymph pain around your chest. It's become a more common problem, without many breaks between treatment. There is minor scarring of the lung tissue, and this makes it harder to get air across the lung tissue where it's picked up by the red blood cells and taken as oxygen to your body. Fatigue is starting to become an issue.

Stage 3- Pulmonary function tests start showing a problem with DLCO--Diffuse Lung Capacity Oxygenation- -- as your lungs are now scarring (much the same as pulmonary fibrosis) and you have a tendency to not be able to get the bad air (carbon dioxide) out of your lungs unless you learn to REALLY FULLY EXHALE and blow that air out. You may have some numbness in your hands and feet-- as your body needs the oxygen to keep the vital organs alive, so it cuts back the amount that goes out to your extremities. You may need supplemental oxygen during exertion.

Stage IV. You have significant scarring, lung capacity has dropped down (ie. mine is 64% of normal) and you will need supplemental oxygen full time. This level gets trickier, and you may develop pulmonary hypertension where the heart demands more oxygen than the lungs can provide-- and eventually the huge vessel that goes from the lungs to the heart has to thicken to hold the extra blood pressure. As it thickens, it narrows from the inside, and this can put you at high risk for a blood clot either in the lungs or heart. (I've been in Stage 4 for 8 yrs now and yes, I do have pulm hypertension. )

Normal healthy lungs look like your new kitchen sponge-- and with sarcoidosis, ours beging to look like the sponge needs to be tossed out, as the cell membranes tear or fibrose (scar) over. Mine look like the sponge that is falling apart, and so old that it can't absorb much-- I've only got 2 (out of 5) healthy sections left.

Sarcoidosis can affect any organ. Lungs, eyes (iritis or uveitis), liver, kidneys, muscles, joints, ligaments, bones, heart, nerves, -- it doesn't care. Somehow, the signal got sent that there was a problem, the immune system kicked into hyperdrive, and even if the problem has long gone, your immune system isn't shutting down to normal.

Fatigue-- not "I've had a long day" fatigue, but exhaustion that will make you feel like that one time you had pneumonia as a kid was a calkwalk- fatigue; is huge. Body aches and pains--- the docs will tell you it's fibromyalgia, or arthritis, or chronic fatigue syndrome-- (and it may be) but it doesn't let up.

Sarcoidosis loves our hands and feet and ankles. It is a form of sarcoid-induced arthritis, and anti-inflammatories do help.

This disease mimics Multiple Scleroisis, Rheumatoid Arthritis, Peripheral Neuropathy, Dementia (neurosarcoidosis) , Fibromyalgia, Chronic Fatigue, all wrapped into one.

Most people do not get sarcoidosis to that extent-- and for those of us that do- we will be needing to learn to pace ourself, rest when the body dictates, take multiple anti-inflammatories , and immune suppressants. Generally the docs start you off with high dose prednisone, and then as they wean you off- and your symptoms return, they need to add a different immunosuppressant- - Ie. Imuran, Arava, Methotrexate, Plaquenil, or the bigger guns-- Humira, Enbrel, Cellcept, Remicade.

It is important to start with the least offensive, and add or adjust as needed-- one at a time. That way, if you've got any side effects from the meds, they can figure out what is causing it.

Hope this helps,

Tracie

NS Co-owner/moderator

Ramblin' RoseModerator Bingâ„¢ brings you maps, menus, and reviews organized in one place. Try it now.

[Guest guest]

Hi Dakota

I'm a neurosarc only person also. I've been on Cytoxin for 4 years? and I have been told it's not really working for me. My advice-don't dwell on it, laugh as much as possible and keep your true friends and family close. I also knit for charities. No matter what we may have there is always someone worse off out there that I can help even if it's in a small way. Ask lots of questions here & someone either has the answer or will try to get it for you.

Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

Subject: new to thisTo: Neurosarcoidosis Date: Thursday, June 18, 2009, 10:46 AM

Hi im dakota im 23 i was just givein the news of nero sarcoid. i have been sick for a while but it took the most recent time when i went blind in my right eye to catch it. i did restore my sight with streiods but there are good days and bad days. the docs say this is rare type of sarcoid i have cuse it only affects the brain nowere else and it started there. any one out there got any advice for day to day living it wolud be apprecated.ThanksDakota