Re: Autoimmune Enteropathy--new member

[Guest guest]

Welcome to the group, Anita.

I don't know anything about that disease myself, but it certainly sounds like your little boy is having a rough start.

I'll keep my eye open for any info.

Kathy

Autoimmune Enteropathy--new member

Hello all,

Wow! What a busy group! I am brand new to the list (haven't even read any of the archives yet). I'm glad to have found this group. My son is 19 months old and has just been diagnosed with "Autoimmune Enteropathy". Does anybody here have this disease or have any knowledge of it? We're told it's very rare (30-50 diagnosed worldwide). It's similar to Celiac in that the intestinal villi are flattened, but it cannot be treated through diet (totally unrelated to food). My son starts a course of 3-6 weeks high dose Prednisone today, followed by 6-12 weeks slow taper. Then he will be rescoped to see if he is in remission.

My son has had such a tough start! He was born in Vietnam as a preemie and miraculously made it through that. We adopted him at 4.5 months old. He's always had pretty major Failure to Thrive and refuses to eat (we're assuming because of the pain he was in). He began tube feedings in late February and now has a G-tube and only gets an amino-acid based, predigested formula to "eat" because all other foods make him ill. We just traveled cross-country last week to see a new doctor (Philip Putnam at Cincinnati Children's, PED GI) and FINALLY received this diagnosis. Despite all of that, he is an incredibly cute, intelligent, and fairly typical toddler!

I am an information-hungry type of mom so the fact that so little information is available on the internet about this disease is really frustrating! I'm dying for information so that we can get prepared for the future.

Thanks for listening. Good to be here.

AnitaPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Thanks Kathy. And thanks for the welcome!

Anita

-----Original Message-----From: e O'Hara

Welcome to the group, Anita.

I don't know anything about that disease myself, but it certainly sounds like your little boy is having a rough start.

I'll keep my eye open for any info.

Kathy

[Guest guest]

Anita - I did a quick search on yahoo and scanned quickly through a couple and it sounds like you're in for a fight. One board said their kids with it was in there late teens and had lived with it their whole lives. Here's the board where others kids have it: http://www.healthboards.com/ubb/Forum69/HTML/000088.html . Don't know if you've seen this or not yet. Its rough having autoimmune problems as an adult and I can't imagine going through all that at his age. Bless his heart! We're here for support for you, and we'll listen anytime! I'm glad you found us.

[Guest guest]

Thanks so much ! Yes, I found that one thread on that healthboard.com site and posted to it but my post was taken down for some odd reason by the moderators. =-/ Guess they don't like what I had to say! I've been researching all morning and FINALLY found 3 pages of information in a 113 page medical paper. I feel like I'm in hog heaven right now. Of course, I'll spend the rest of the day trying to figure out all of the "doctor speak" on those three pages, but it's a start! Thanks for the welcome.

Anita

mom to Samren (19 months and just diagnosed with Autoimmune Enteropathy)

-----Original Message-----From: Sent: Monday, June 30, 2003 12:27 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

Anita - I did a quick search on yahoo and scanned quickly through a couple and it sounds like you're in for a fight. One board said their kids with it was in there late teens and had lived with it their whole lives. Here's the board where others kids have it: http://www.healthboards.com/ubb/Forum69/HTML/000088.html . Don't know if you've seen this or not yet. Its rough having autoimmune problems as an adult and I can't imagine going through all that at his age. Bless his heart! We're here for support for you, and we'll listen anytime! I'm glad you found us.

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Hello Anita!

I beleve its somewhat close to what i have. I have a condion called Eosinophilic Gastroenteritis. (more info on it at www.apfed.org ) they might have information on autoimmune enteropathy....... give it a try... Whati have is simalar to crohns, i was on prednisone for a LONG while. Its nasty stuff. I gained over 60lbs on it and still havent lost any... OMG you know Dr. P? Wow! He is a big thing on the EG lists. I would love Dr. P to hlep me but i dont have moeny to go down and see him.,....

Give me a shout on my email if you want to talk.. are you on the EG list by chance? *blink blink* my email is kmosch @ telus.net (take out the spaces, im starting to get attacked on message lists so im taking out my email like that, got subscribed to some weird list)Would love to talk to you, do you have AIM? MSN? Yaho? or something like that we could talk through?

Kat

-----Original Message-----From: A. Gillispie Sent: June 30, 2003 7:22 AMTo: autoimmune-ills Subject: Autoimmune Enteropathy--new member

Hello all,

Wow! What a busy group! I am brand new to the list (haven't even read any of the archives yet). I'm glad to have found this group. My son is 19 months old and has just been diagnosed with "Autoimmune Enteropathy". Does anybody here have this disease or have any knowledge of it? We're told it's very rare (30-50 diagnosed worldwide). It's similar to Celiac in that the intestinal villi are flattened, but it cannot be treated through diet (totally unrelated to food). My son starts a course of 3-6 weeks high dose Prednisone today, followed by 6-12 weeks slow taper. Then he will be rescoped to see if he is in remission.

My son has had such a tough start! He was born in Vietnam as a preemie and miraculously made it through that. We adopted him at 4.5 months old. He's always had pretty major Failure to Thrive and refuses to eat (we're assuming because of the pain he was in). He began tube feedings in late February and now has a G-tube and only gets an amino-acid based, predigested formula to "eat" because all other foods make him ill. We just traveled cross-country last week to see a new doctor (Philip Putnam at Cincinnati Children's, PED GI) and FINALLY received this diagnosis. Despite all of that, he is an incredibly cute, intelligent, and fairly typical toddler!

I am an information-hungry type of mom so the fact that so little information is available on the internet about this disease is really frustrating! I'm dying for information so that we can get prepared for the future.

Thanks for listening. Good to be here.

AnitaPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Anita,

Welcome to the group! I don't know anything about Autoimmue Enteropathy, but I'll bet someone here does. It must be a relief to have a diagnosis. I think we'd all like to see a picture of your baby, too; is that a possibility? I'm glad he has you for a mom.

Hugs,

Autoimmune Enteropathy--new member

Hello all,

Wow! What a busy group! I am brand new to the list (haven't even read any of the archives yet). I'm glad to have found this group. My son is 19 months old and has just been diagnosed with " Autoimmune Enteropathy " . Does anybody here have this disease or have any knowledge of it? We're told it's very rare (30-50 diagnosed worldwide). It's similar to Celiac in that the intestinal villi are flattened, but it cannot be treated through diet (totally unrelated to food). My son starts a course of 3-6 weeks high dose Prednisone today, followed by 6-12 weeks slow taper. Then he will be rescoped to see if he is in remission.

My son has had such a tough start! He was born in Vietnam as a preemie and miraculously made it through that. We adopted him at 4.5 months old. He's always had pretty major Failure to Thrive and refuses to eat (we're assuming because of the pain he was in). He began tube feedings in late February and now has a G-tube and only gets an amino-acid based, predigested formula to " eat " because all other foods make him ill. We just traveled cross-country last week to see a new doctor (Philip Putnam at Cincinnati Children's, PED GI) and FINALLY received this diagnosis. Despite all of that, he is an incredibly cute, intelligent, and fairly typical toddler!

I am an information-hungry type of mom so the fact that so little information is available on the internet about this disease is really frustrating! I'm dying for information so that we can get prepared for the future.

Thanks for listening. Good to be here.

AnitaPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Anita, welcome to our group. Sorry you have such a perplexing reason

for needing us but we are a very inquisitive group and if there is

information anywhere to be found about " Autoimmune Enteropathy " , then

someone will help you find it. Make yourself at home and let us be a

sounding board when you are frustrated from you inability to help.

I'm sure you're a wonderful mother and your little boy is a very lucky

child to have someone like you who cares so very much.

Hugs,

Jane

Co-Moderator

> Hello all,

>

> Wow! What a busy group! I am brand new to the list (haven't even

read any

> of the archives yet). I'm glad to have found this group. My son is 19

> months old and has just been diagnosed with " Autoimmune

Enteropathy " . Does

> anybody here have this disease or have any knowledge of it? We're

told it's

> very rare (30-50 diagnosed worldwide). It's similar to Celiac in

that the

> intestinal villi are flattened, but it cannot be treated through diet

> (totally unrelated to food). My son starts a course of 3-6 weeks

high dose

> Prednisone today, followed by 6-12 weeks slow taper. Then he will be

> rescoped to see if he is in remission.

>

> My son has had such a tough start! He was born in Vietnam as a

preemie and

> miraculously made it through that. We adopted him at 4.5 months

old. He's

> always had pretty major Failure to Thrive and refuses to eat (we're

assuming

> because of the pain he was in). He began tube feedings in late

February and

> now has a G-tube and only gets an amino-acid based, predigested

formula to

> " eat " because all other foods make him ill. We just traveled

cross-country

> last week to see a new doctor (Philip Putnam at Cincinnati

Children's, PED

> GI) and FINALLY received this diagnosis. Despite all of that, he is an

> incredibly cute, intelligent, and fairly typical toddler!

>

> I am an information-hungry type of mom so the fact that so little

> information is available on the internet about this disease is really

> frustrating! I'm dying for information so that we can get prepared

for the

> future.

>

> Thanks for listening. Good to be here.

> Anita

[Guest guest]

Hi Kat,

Yes! I'm very familiar with eos. disorder as that is what we thought Samren had until a few days ago! It was through the eos. lists that I learned of Dr. Putnam at Cincinnati Children's. We just returned from a week of appointments with him and he really is as wonderful as everybody told me he was. We traveled a long way to see him, (14 hours each way) but it was well worth it.

It's funny that you mention Samren's Autoimmune Enteropathy as sounding similar to EG--I think so as well. It's different from the allergic type of Eosinophilic disorder because Samren's disease can't be managed with diet at all (even though eating food makes his *symptoms* worse). But it is similar to the non-allergic type of eos. disorder in that steroids and/or TPN is used for treatment. The way Dr. Putnam explained it to us is that Eosinophils are one type of cell that causes inflammation when it acts abnormally and collects in large numbers (thus, eos. disorder). Samren has what they call "multi-cellular infiltrate", in which there are several types of healthy cells that are acting abnormally (including Eosinophils!) to cause major inflammation and disease in his intestines (thus, Autoimmune Enteropathy). I kind of think of Samren's disease (at this point) as like a type of Celiac that can't be controlled with diet, so steroids are the treatment. That's my simple understanding of all of this right now, but I'm still trying desperately to learn more! The combined use of steroids and TPN causes about a 20% mortality rate in the first 10 years of life and I keep seeing things like "prognosis is poor" on the internet, so I'm hoping and praying Samren can get into remission after this first course of high dose steroids. Guess we'll just have to take it one day at a time though.

Anita

-----Original Message-----From: Kat Mosch Sent: Monday, June 30, 2003 2:08 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

Hello Anita!

I beleve its somewhat close to what i have. I have a condion called Eosinophilic Gastroenteritis. (more info on it at www.apfed.org ) they might have information on autoimmune enteropathy....... give it a try... Whati have is simalar to crohns, i was on prednisone for a LONG while. Its nasty stuff. I gained over 60lbs on it and still havent lost any... OMG you know Dr. P? Wow! He is a big thing on the EG lists. I would love Dr. P to hlep me but i dont have moeny to go down and see him.,....

Give me a shout on my email if you want to talk.. are you on the EG list by chance? *blink blink* my email is kmosch @ telus.net (take out the spaces, im starting to get attacked on message lists so im taking out my email like that, got subscribed to some weird list)Would love to talk to you, do you have AIM? MSN? Yaho? or something like that we could talk through?

Kat

-----Original Message-----From: A. Gillispie Sent: June 30, 2003 7:22 AMTo: autoimmune-ills Subject: Autoimmune Enteropathy--new member

Hello all,

Wow! What a busy group! I am brand new to the list (haven't even read any of the archives yet). I'm glad to have found this group. My son is 19 months old and has just been diagnosed with "Autoimmune Enteropathy". Does anybody here have this disease or have any knowledge of it? We're told it's very rare (30-50 diagnosed worldwide). It's similar to Celiac in that the intestinal villi are flattened, but it cannot be treated through diet (totally unrelated to food). My son starts a course of 3-6 weeks high dose Prednisone today, followed by 6-12 weeks slow taper. Then he will be rescoped to see if he is in remission.

My son has had such a tough start! He was born in Vietnam as a preemie and miraculously made it through that. We adopted him at 4.5 months old. He's always had pretty major Failure to Thrive and refuses to eat (we're assuming because of the pain he was in). He began tube feedings in late February and now has a G-tube and only gets an amino-acid based, predigested formula to "eat" because all other foods make him ill. We just traveled cross-country last week to see a new doctor (Philip Putnam at Cincinnati Children's, PED GI) and FINALLY received this diagnosis. Despite all of that, he is an incredibly cute, intelligent, and fairly typical toddler!

I am an information-hungry type of mom so the fact that so little information is available on the internet about this disease is really frustrating! I'm dying for information so that we can get prepared for the future.

Thanks for listening. Good to be here.

AnitaPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Welcome to the group Anita. I live in Australia and have found this group incredibly helpful to me to cope with my autoimmune conditions. It is so great to have people who understand what you are going through and who have tested and tried methods to "manage" the conditions. There are also people with medical backgrounds who can steer you in the right direction. I don't know anything about your son's condition but I'm sure there are people in the group who will. I see that has already been helpful in finding you a relevant site to do some research. I've found the internet invaluable to find out information.

Good luck. Hang in there. Keep in touch.

Robyn wrote:

Anita - I did a quick search on yahoo and scanned quickly through a couple and it sounds like you're in for a fight. One board said their kids with it was in there late teens and had lived with it their whole lives. Here's the board where others kids have it: http://www.healthboards.com/ubb/Forum69/HTML/000088.html . Don't know if you've seen this or not yet. Its rough having autoimmune problems as an adult and I can't imagine going through all that at his age. Bless his heart! We're here for support for you, and we'll listen anytime! I'm glad you found us.

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

they said the same thing about EG, that kids die from it. but the thing is i had eg my whole life and just got diagnosed as a teen... its hard but you can live with rare illness....

im online if yu want to talk or you can give me a call if you want to.

Im just about to go on an elmental diet (second try, just have to wait for dr approvle)

well im altering a tshirt right now for the olympic anouncements.. so ya.. checking in every so often!Kat

-----Original Message-----From: A. Gillispie Sent: June 30, 2003 1:17 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

Hi Kat,

Yes! I'm very familiar with eos. disorder as that is what we thought Samren had until a few days ago! It was through the eos. lists that I learned of Dr. Putnam at Cincinnati Children's. We just returned from a week of appointments with him and he really is as wonderful as everybody told me he was. We traveled a long way to see him, (14 hours each way) but it was well worth it.

It's funny that you mention Samren's Autoimmune Enteropathy as sounding similar to EG--I think so as well. It's different from the allergic type of Eosinophilic disorder because Samren's disease can't be managed with diet at all (even though eating food makes his *symptoms* worse). But it is similar to the non-allergic type of eos. disorder in that steroids and/or TPN is used for treatment. The way Dr. Putnam explained it to us is that Eosinophils are one type of cell that causes inflammation when it acts abnormally and collects in large numbers (thus, eos. disorder). Samren has what they call "multi-cellular infiltrate", in which there are several types of healthy cells that are acting abnormally (including Eosinophils!) to cause major inflammation and disease in his intestines (thus, Autoimmune Enteropathy). I kind of think of Samren's disease (at this point) as like a type of Celiac that can't be controlled with diet, so steroids are the treatment. That's my simple understanding of all of this right now, but I'm still trying desperately to learn more! The combined use of steroids and TPN causes about a 20% mortality rate in the first 10 years of life and I keep seeing things like "prognosis is poor" on the internet, so I'm hoping and praying Samren can get into remission after this first course of high dose steroids. Guess we'll just have to take it one day at a time though.

Anita

-----Original Message-----From: Kat Mosch Sent: Monday, June 30, 2003 2:08 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

Hello Anita!

I beleve its somewhat close to what i have. I have a condion called Eosinophilic Gastroenteritis. (more info on it at www.apfed.org ) they might have information on autoimmune enteropathy....... give it a try... Whati have is simalar to crohns, i was on prednisone for a LONG while. Its nasty stuff. I gained over 60lbs on it and still havent lost any... OMG you know Dr. P? Wow! He is a big thing on the EG lists. I would love Dr. P to hlep me but i dont have moeny to go down and see him.,....

Give me a shout on my email if you want to talk.. are you on the EG list by chance? *blink blink* my email is kmosch @ telus.net (take out the spaces, im starting to get attacked on message lists so im taking out my email like that, got subscribed to some weird list)Would love to talk to you, do you have AIM? MSN? Yaho? or something like that we could talk through?

Kat

-----Original Message-----From: A. Gillispie Sent: June 30, 2003 7:22 AMTo: autoimmune-ills Subject: Autoimmune Enteropathy--new member

Hello all,

Wow! What a busy group! I am brand new to the list (haven't even read any of the archives yet). I'm glad to have found this group. My son is 19 months old and has just been diagnosed with "Autoimmune Enteropathy". Does anybody here have this disease or have any knowledge of it? We're told it's very rare (30-50 diagnosed worldwide). It's similar to Celiac in that the intestinal villi are flattened, but it cannot be treated through diet (totally unrelated to food). My son starts a course of 3-6 weeks high dose Prednisone today, followed by 6-12 weeks slow taper. Then he will be rescoped to see if he is in remission.

My son has had such a tough start! He was born in Vietnam as a preemie and miraculously made it through that. We adopted him at 4.5 months old. He's always had pretty major Failure to Thrive and refuses to eat (we're assuming because of the pain he was in). He began tube feedings in late February and now has a G-tube and only gets an amino-acid based, predigested formula to "eat" because all other foods make him ill. We just traveled cross-country last week to see a new doctor (Philip Putnam at Cincinnati Children's, PED GI) and FINALLY received this diagnosis. Despite all of that, he is an incredibly cute, intelligent, and fairly typical toddler!

I am an information-hungry type of mom so the fact that so little information is available on the internet about this disease is really frustrating! I'm dying for information so that we can get prepared for the future.

Thanks for listening. Good to be here.

AnitaPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Anita, welcome to the group! I hate welcoming new members because of the reasons they usually find us but I get particularly frustrated when we're talking about children! I know how difficult it is for me, as an adult, to live with autoimmune diseases and I shudder at the thought of a baby having to endure a prednisone taper! He'll probably do so much better, immediately, when the prednisone gets into his system but I can't even imagine how he'll do with the withdrawals. I'm sure your doctor has it low enough and slow enough that he'll do just fine with it.

I don't have much info on that particular disease but I'll see what I can find.

How blessed you are to have found your son like you did and how blessed he is to have such a caring, concerned, loving mother. I hope we can help you find information but I KNOW we can offer you love and support as you deal with this issue.

What is your son's name? Where do you live? I know you said you went cross country to Cincinnati and received the diagnosis so you've really fought a tough part of the battle! One of the most difficult things to do is obtain an accurate diagnosis. Congrats on doing that part!

Tell us more about you! Do you work outside the home?

One of the things that makes us a special group is that we don't only deal with the illness and disease portion of your life. Autoimmune diseases affect every aspect of our lives and we talk about all of it and support each other through it all, good and bad.

Glad you found us!

Christy

List Mama

Autoimmune Enteropathy--new member

Hello all,

Wow! What a busy group! I am brand new to the list (haven't even read any of the archives yet). I'm glad to have found this group. My son is 19 months old and has just been diagnosed with "Autoimmune Enteropathy". Does anybody here have this disease or have any knowledge of it? We're told it's very rare (30-50 diagnosed worldwide). It's similar to Celiac in that the intestinal villi are flattened, but it cannot be treated through diet (totally unrelated to food). My son starts a course of 3-6 weeks high dose Prednisone today, followed by 6-12 weeks slow taper. Then he will be rescoped to see if he is in remission.

My son has had such a tough start! He was born in Vietnam as a preemie and miraculously made it through that. We adopted him at 4.5 months old. He's always had pretty major Failure to Thrive and refuses to eat (we're assuming because of the pain he was in). He began tube feedings in late February and now has a G-tube and only gets an amino-acid based, predigested formula to "eat" because all other foods make him ill. We just traveled cross-country last week to see a new doctor (Philip Putnam at Cincinnati Children's, PED GI) and FINALLY received this diagnosis. Despite all of that, he is an incredibly cute, intelligent, and fairly typical toddler!

I am an information-hungry type of mom so the fact that so little information is available on the internet about this disease is really frustrating! I'm dying for information so that we can get prepared for the future.

Thanks for listening. Good to be here.

AnitaPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Anita, welcome to the group! I hate welcoming new members because of the reasons they usually find us but I get particularly frustrated when we're talking about children! I know how difficult it is for me, as an adult, to live with autoimmune diseases and I shudder at the thought of a baby having to endure a prednisone taper! He'll probably do so much better, immediately, when the prednisone gets into his system but I can't even imagine how he'll do with the withdrawals. I'm sure your doctor has it low enough and slow enough that he'll do just fine with it.

I don't have much info on that particular disease but I'll see what I can find.

How blessed you are to have found your son like you did and how blessed he is to have such a caring, concerned, loving mother. I hope we can help you find information but I KNOW we can offer you love and support as you deal with this issue.

What is your son's name? Where do you live? I know you said you went cross country to Cincinnati and received the diagnosis so you've really fought a tough part of the battle! One of the most difficult things to do is obtain an accurate diagnosis. Congrats on doing that part!

Tell us more about you! Do you work outside the home?

One of the things that makes us a special group is that we don't only deal with the illness and disease portion of your life. Autoimmune diseases affect every aspect of our lives and we talk about all of it and support each other through it all, good and bad.

Glad you found us!

Christy

List Mama

Autoimmune Enteropathy--new member

Hello all,

Wow! What a busy group! I am brand new to the list (haven't even read any of the archives yet). I'm glad to have found this group. My son is 19 months old and has just been diagnosed with "Autoimmune Enteropathy". Does anybody here have this disease or have any knowledge of it? We're told it's very rare (30-50 diagnosed worldwide). It's similar to Celiac in that the intestinal villi are flattened, but it cannot be treated through diet (totally unrelated to food). My son starts a course of 3-6 weeks high dose Prednisone today, followed by 6-12 weeks slow taper. Then he will be rescoped to see if he is in remission.

My son has had such a tough start! He was born in Vietnam as a preemie and miraculously made it through that. We adopted him at 4.5 months old. He's always had pretty major Failure to Thrive and refuses to eat (we're assuming because of the pain he was in). He began tube feedings in late February and now has a G-tube and only gets an amino-acid based, predigested formula to "eat" because all other foods make him ill. We just traveled cross-country last week to see a new doctor (Philip Putnam at Cincinnati Children's, PED GI) and FINALLY received this diagnosis. Despite all of that, he is an incredibly cute, intelligent, and fairly typical toddler!

I am an information-hungry type of mom so the fact that so little information is available on the internet about this disease is really frustrating! I'm dying for information so that we can get prepared for the future.

Thanks for listening. Good to be here.

AnitaPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Anita - If you have problems figuring out the "doctor language" just ask us. We have some nurses on the list and we'll try to help you through anything!

[Guest guest]

Anita - Don't get to caught up in the prognosis. Just take it one day at a time. If you get down and need a shoulder to cry on or a good laugh, that's what we're here for. We're an inquisitive bunch and we like to find out things that we don't know so you've given us a challenge. lol We also have a web page, I don't know if you've run across it http://aces_autoimmune.tripod.com/. Hang in there and don't give up!

[Guest guest]

Welcome to our family Anita....So sorry for the things this little fella has to go thru so young......I myself have not heard of this, and I know what you're going thru trying to get info.....I had to do the same thing on my hemachromatosis 10 years ago and now on my NASH....So little to no information was available....Might I suggest that you start a group for this disease....I did this 3 years ago with NASH....I was the only member for several months, and then one by one, people joined....We now have almost 300 members....Another thing is to set up a website about your son....Pictures and info, etc....You'll be surprised at the response you'll get.....Now third, don't leave this group....We are a great support for each other and we need each other.....Again, welcome and I hope my suggestions have helped....Pam, Co-Owner

------------------------------------------------------------------ [NASH Group Website]http://www.geocities.com/liver_nash/

Subscribe: NASH-Non-Alcoholic-Steatohepatitis-subscribe Unsubscribe: NASH-Non-Alcoholic-Steatohepatitis-unsubscribe List owner: NASH-Non-Alcoholic-Steatohepatitis-owner

Autoimmune Enteropathy--new member

Hello all,

Wow! What a busy group! I am brand new to the list (haven't even read any of the archives yet). I'm glad to have found this group. My son is 19 months old and has just been diagnosed with "Autoimmune Enteropathy". Does anybody here have this disease or have any knowledge of it? We're told it's very rare (30-50 diagnosed worldwide). It's similar to Celiac in that the intestinal villi are flattened, but it cannot be treated through diet (totally unrelated to food). My son starts a course of 3-6 weeks high dose Prednisone today, followed by 6-12 weeks slow taper. Then he will be rescoped to see if he is in remission.

My son has had such a tough start! He was born in Vietnam as a preemie and miraculously made it through that. We adopted him at 4.5 months old. He's always had pretty major Failure to Thrive and refuses to eat (we're assuming because of the pain he was in). He began tube feedings in late February and now has a G-tube and only gets an amino-acid based, predigested formula to "eat" because all other foods make him ill. We just traveled cross-country last week to see a new doctor (Philip Putnam at Cincinnati Children's, PED GI) and FINALLY received this diagnosis. Despite all of that, he is an incredibly cute, intelligent, and fairly typical toddler!

I am an information-hungry type of mom so the fact that so little information is available on the internet about this disease is really frustrating! I'm dying for information so that we can get prepared for the future.

Thanks for listening. Good to be here.

AnitaPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Thanks Robyn. As I begin to learn about this disease and its treatment I'm also learning that even though we may not find anybody else with it, so many of the autoimmune diseases have similar treatments. *This* community still "fits" our family. Plus, I don't think I mentioned this before, but my hubby is a Type I Diabetic. I am, of course, most concerned for both my husband's and my son's welfare, but I would be lying if a few "why me's" hadn't entered my mind lately. It's really difficult to watch my husband's health deteriorate and now I'm faced with possibly watching my son go down a similar road. It's hard....and I'm glad to have found this group. Have I said that enough times yet?! ;-)

Anita

-----Original Message-----From: robyn bray

Welcome to the group Anita. I live in Australia and have found this group incredibly helpful to me to cope with my autoimmune conditions. It is so great to have people who understand what you are going through and who have tested and tried methods to "manage" the conditions. There are also people with medical backgrounds who can steer you in the right direction. I don't know anything about your son's condition but I'm sure there are people in the group who will. I see that has already been helpful in finding you a relevant site to do some research. I've found the internet invaluable to find out information.

Good luck. Hang in there. Keep in touch.

Robyn

[Guest guest]

-----Original Message-----

they said the same thing about EG, that kids die from it. but the thing is i had eg my whole life and just got diagnosed as a teen... its hard but you can live with rare illness....

That's what I'm hoping Kat. I think TPN is what really scares me. I've read that the TPN is what leads to most of the deaths related to Autoimmune Enteropathy. But you know what? It was just a few weeks ago that I said to somebody that steroids were my worst fear. Now, when faced with the alternative of Samren getting cancer if we DON'T give steroids, the steroids don't seem quite so bad! There was a time when "no food" sounded scary....and a time when a feeding tube sounded scary....but as we have taken each scary step with Samren he has gotten better! I'll try to remember that when/if we have to take the "next" step (whatever that may be).

Im just about to go on an elmental diet (second try, just have to wait for dr approvle)

Good luck with the Elemental. Samren drinks his formula better than some, but not nearly enough to go without the tube. I've tasted his Neocate One+ and it is NASTY! But I guess if it makes you feel better, it is worth it. I hope the diet works for you this time.

Anita

[Guest guest]

Ya the elemental is crappy.. its only in orange flavor and is disgusting... im pushing for a ng tube or a gtube.. im sick of the flavor...

other then that.. so is he on TPN? or is he tube fed?

Kat

-----Original Message-----From: A. Gillispie Sent: June 30, 2003 7:38 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

-----Original Message-----

they said the same thing about EG, that kids die from it. but the thing is i had eg my whole life and just got diagnosed as a teen... its hard but you can live with rare illness....

That's what I'm hoping Kat. I think TPN is what really scares me. I've read that the TPN is what leads to most of the deaths related to Autoimmune Enteropathy. But you know what? It was just a few weeks ago that I said to somebody that steroids were my worst fear. Now, when faced with the alternative of Samren getting cancer if we DON'T give steroids, the steroids don't seem quite so bad! There was a time when "no food" sounded scary....and a time when a feeding tube sounded scary....but as we have taken each scary step with Samren he has gotten better! I'll try to remember that when/if we have to take the "next" step (whatever that may be).

Im just about to go on an elmental diet (second try, just have to wait for dr approvle)

Good luck with the Elemental. Samren drinks his formula better than some, but not nearly enough to go without the tube. I've tasted his Neocate One+ and it is NASTY! But I guess if it makes you feel better, it is worth it. I hope the diet works for you this time.

AnitaPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

-----Original Message-----From: Kat Mosch so is he on TPN? or is he tube fed? Kat

Samren is tube fed elemental formula. So far we haven't had to do TPN and I hope it stays that way! =-)

Anita

[Guest guest]

Don't forget our lady doc, Chris. She must be really involved right

now with the wedding or else she has had another medical problem since

we haven't heard from her in about 10 days. Hope all is going okay

for her.

Jane

> Anita1 StationeryAnita - If you have problems figuring out the " doctor

> language " just ask us. We have some nurses on the list and we'll try

to help

> you through anything!

>

>

[Guest guest]

thats good.. there are quite a few lists i have heard for people that are tube fed... (here on yahoo)

if you on any of the EG lists, ask Steph, her and her 5 kids (think its 5?) all have diffrent forms of eosinophilic disorders, and all but one is tube fed....

Kat

-----Original Message-----From: A. Gillispie Sent: June 30, 2003 8:01 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

-----Original Message-----From: Kat Mosch so is he on TPN? or is he tube fed? Kat

Samren is tube fed elemental formula. So far we haven't had to do TPN and I hope it stays that way! =-)

AnitaPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

-----Original Message-----From: Christy

Anita, welcome to the group! I hate welcoming new members because of the reasons they usually find us but I get particularly frustrated when we're talking about children!

Thanks Christy. I wish we could have "met" under different circumstances, but am so glad that this group is around so that everybody dealing with an autoimmune disease (or caring for somebody who is) can get the support they need.

I know how difficult it is for me, as an adult, to live with autoimmune diseases and I shudder at the thought of a baby having to endure a prednisone taper!

Not that I want to invite "bad news", but please do tell me what it's like! How hard is it on you? What do you go through?

He'll probably do so much better, immediately, when the prednisone gets into his system but I can't even imagine how he'll do with the withdrawals.

The bad thing is that Samren is either going to appear to be the same on the Pred., or he's going to appear to get worse (because of the side effects). He is pretty much asymptomatic right now on elemental formula, even though the disease is eating him up on the inside. I WISH I was going to be able to actually *see* the improvement, but we'll have to wait for an endoscopy to tell us one way or another if this treatment works.

Can you describe what you mean by "withdrawals"?

I'm sure your doctor has it low enough and slow enough that he'll do just fine with it.

He's supposedly "high dose" for 3-6 weeks and then we taper for another 6-12 weeks and hope he is in remission. His "high dose" is 7mg a day, split up 5mg in the morning and 2mg in the evening. I have no idea how that dosage compares with others who take Pred. though. I do have completely trust in our doctor--FINALLY found a great one! ;-)

I hope we can help you find information but I KNOW we can offer you love and support as you deal with this issue.

That is already evident from the welcome I've received here. I feel very blessed by this list right now!

What is your son's name?

Samren--an Asian name that didn't sound so Asian that he would be made fun of at school. His Vietnamese name is/was Tuan Duc. We didn't think "Duc" would fly (pardon the pun!) too well at school. ;-) We kept Tuan as a second middle name though.

Where do you live?

Tulsa, Oklahoma. So "cross country" probably wasn't used in the right wording in my previous post. It is about a 14 hour drive each way. Still felt long considering I am the only driver in our family (hubby is almost blind due to his diabetes). But the trip was well worth it to get such better care than is available here in Oklahoma.

One of the most difficult things to do is obtain an accurate diagnosis. Congrats on doing that part!

Oh, it feels so good Christy! We didn't know what we would do if this particular doctor couldn't give us answers. We were at the end of the line.

Tell us more about you! Do you work outside the home?

Well....I have a degree in K-12 Music Education with an emphasis on early childhood and taught for 3 years before quitting to work from home for an international adoption agency. I loved that in so many ways, but in the end "working from home" was really a LOT of work--many more hours than I worked as a teacher. So, I resigned from that position on January 1st of this year so that I could be a full time mom to my kiddos. Samren's health issues were coming to a head and my gut just told me that I needed to be available to him WAY more than I was. My gut was right because a month later he was admitted to the hospital for 16 days!

So right now I'm still trying to get settled in as the stay at home mom I always dreamed I would be. I keep waiting for things to come to some kind of resting point with Samren's health so that I can get to all of the fun stuff I thought this would entail! No doubt, there's still a lot of fun stuff--I just wish it could be the focus more (rather than doctor appointments and therapy sessions). I know that some full time moms say that they struggle with boredom, but I can't imagine getting bored right now! There's always so much on my plate! =-)

I mentioned in another post that my hubby is a Type I Diabetic. That makes life interesting sometimes. His retinas detached in both eyes about a week after our first date and our first 6 months together were dotted with 16 eye surgeries. Luckily, the last surgery, on the second eye FINALLY gave him some sight back (after being completely blind for 3 months). He sees about 20% from one eye--enough to see how beautiful his kiddos are, but not enough to see if I have make-up on or not. We got the word about a year ago that his kidneys are beginning to fail so within the next 3-4 years we should be getting close to him needing a kidney transplant. Other than that, he's doing okay.

I swear, sometimes when I think about my future all I see are medical bills and hospitals! But then I look at my two men (hubby and Samren) and it's all worth it. =-) Remind me of that next time I have a pity party though! LOL That's pretty much a picture of our family right now. We're used to taking it one day at a time with my hubby so in lots of ways the adjustment to including Samren into that train of thought should be easier on us than it might be on some other families.

Anita

[Guest guest]

-----Original Message-----From: Christy

Anita, welcome to the group! I hate welcoming new members because of the reasons they usually find us but I get particularly frustrated when we're talking about children!

Thanks Christy. I wish we could have "met" under different circumstances, but am so glad that this group is around so that everybody dealing with an autoimmune disease (or caring for somebody who is) can get the support they need.

I know how difficult it is for me, as an adult, to live with autoimmune diseases and I shudder at the thought of a baby having to endure a prednisone taper!

Not that I want to invite "bad news", but please do tell me what it's like! How hard is it on you? What do you go through?

He'll probably do so much better, immediately, when the prednisone gets into his system but I can't even imagine how he'll do with the withdrawals.

The bad thing is that Samren is either going to appear to be the same on the Pred., or he's going to appear to get worse (because of the side effects). He is pretty much asymptomatic right now on elemental formula, even though the disease is eating him up on the inside. I WISH I was going to be able to actually *see* the improvement, but we'll have to wait for an endoscopy to tell us one way or another if this treatment works.

Can you describe what you mean by "withdrawals"?

I'm sure your doctor has it low enough and slow enough that he'll do just fine with it.

He's supposedly "high dose" for 3-6 weeks and then we taper for another 6-12 weeks and hope he is in remission. His "high dose" is 7mg a day, split up 5mg in the morning and 2mg in the evening. I have no idea how that dosage compares with others who take Pred. though. I do have completely trust in our doctor--FINALLY found a great one! ;-)

I hope we can help you find information but I KNOW we can offer you love and support as you deal with this issue.

That is already evident from the welcome I've received here. I feel very blessed by this list right now!

What is your son's name?

Samren--an Asian name that didn't sound so Asian that he would be made fun of at school. His Vietnamese name is/was Tuan Duc. We didn't think "Duc" would fly (pardon the pun!) too well at school. ;-) We kept Tuan as a second middle name though.

Where do you live?

Tulsa, Oklahoma. So "cross country" probably wasn't used in the right wording in my previous post. It is about a 14 hour drive each way. Still felt long considering I am the only driver in our family (hubby is almost blind due to his diabetes). But the trip was well worth it to get such better care than is available here in Oklahoma.

One of the most difficult things to do is obtain an accurate diagnosis. Congrats on doing that part!

Oh, it feels so good Christy! We didn't know what we would do if this particular doctor couldn't give us answers. We were at the end of the line.

Tell us more about you! Do you work outside the home?

Well....I have a degree in K-12 Music Education with an emphasis on early childhood and taught for 3 years before quitting to work from home for an international adoption agency. I loved that in so many ways, but in the end "working from home" was really a LOT of work--many more hours than I worked as a teacher. So, I resigned from that position on January 1st of this year so that I could be a full time mom to my kiddos. Samren's health issues were coming to a head and my gut just told me that I needed to be available to him WAY more than I was. My gut was right because a month later he was admitted to the hospital for 16 days!

So right now I'm still trying to get settled in as the stay at home mom I always dreamed I would be. I keep waiting for things to come to some kind of resting point with Samren's health so that I can get to all of the fun stuff I thought this would entail! No doubt, there's still a lot of fun stuff--I just wish it could be the focus more (rather than doctor appointments and therapy sessions). I know that some full time moms say that they struggle with boredom, but I can't imagine getting bored right now! There's always so much on my plate! =-)

I mentioned in another post that my hubby is a Type I Diabetic. That makes life interesting sometimes. His retinas detached in both eyes about a week after our first date and our first 6 months together were dotted with 16 eye surgeries. Luckily, the last surgery, on the second eye FINALLY gave him some sight back (after being completely blind for 3 months). He sees about 20% from one eye--enough to see how beautiful his kiddos are, but not enough to see if I have make-up on or not. We got the word about a year ago that his kidneys are beginning to fail so within the next 3-4 years we should be getting close to him needing a kidney transplant. Other than that, he's doing okay.

I swear, sometimes when I think about my future all I see are medical bills and hospitals! But then I look at my two men (hubby and Samren) and it's all worth it. =-) Remind me of that next time I have a pity party though! LOL That's pretty much a picture of our family right now. We're used to taking it one day at a time with my hubby so in lots of ways the adjustment to including Samren into that train of thought should be easier on us than it might be on some other families.

Anita

[Guest guest]

-----Original Message-----From: Christy

Anita, welcome to the group! I hate welcoming new members because of the reasons they usually find us but I get particularly frustrated when we're talking about children!

Thanks Christy. I wish we could have "met" under different circumstances, but am so glad that this group is around so that everybody dealing with an autoimmune disease (or caring for somebody who is) can get the support they need.

I know how difficult it is for me, as an adult, to live with autoimmune diseases and I shudder at the thought of a baby having to endure a prednisone taper!

Not that I want to invite "bad news", but please do tell me what it's like! How hard is it on you? What do you go through?

He'll probably do so much better, immediately, when the prednisone gets into his system but I can't even imagine how he'll do with the withdrawals.

The bad thing is that Samren is either going to appear to be the same on the Pred., or he's going to appear to get worse (because of the side effects). He is pretty much asymptomatic right now on elemental formula, even though the disease is eating him up on the inside. I WISH I was going to be able to actually *see* the improvement, but we'll have to wait for an endoscopy to tell us one way or another if this treatment works.

Can you describe what you mean by "withdrawals"?

I'm sure your doctor has it low enough and slow enough that he'll do just fine with it.

He's supposedly "high dose" for 3-6 weeks and then we taper for another 6-12 weeks and hope he is in remission. His "high dose" is 7mg a day, split up 5mg in the morning and 2mg in the evening. I have no idea how that dosage compares with others who take Pred. though. I do have completely trust in our doctor--FINALLY found a great one! ;-)

I hope we can help you find information but I KNOW we can offer you love and support as you deal with this issue.

That is already evident from the welcome I've received here. I feel very blessed by this list right now!

What is your son's name?

Samren--an Asian name that didn't sound so Asian that he would be made fun of at school. His Vietnamese name is/was Tuan Duc. We didn't think "Duc" would fly (pardon the pun!) too well at school. ;-) We kept Tuan as a second middle name though.

Where do you live?

Tulsa, Oklahoma. So "cross country" probably wasn't used in the right wording in my previous post. It is about a 14 hour drive each way. Still felt long considering I am the only driver in our family (hubby is almost blind due to his diabetes). But the trip was well worth it to get such better care than is available here in Oklahoma.

One of the most difficult things to do is obtain an accurate diagnosis. Congrats on doing that part!

Oh, it feels so good Christy! We didn't know what we would do if this particular doctor couldn't give us answers. We were at the end of the line.

Tell us more about you! Do you work outside the home?

Well....I have a degree in K-12 Music Education with an emphasis on early childhood and taught for 3 years before quitting to work from home for an international adoption agency. I loved that in so many ways, but in the end "working from home" was really a LOT of work--many more hours than I worked as a teacher. So, I resigned from that position on January 1st of this year so that I could be a full time mom to my kiddos. Samren's health issues were coming to a head and my gut just told me that I needed to be available to him WAY more than I was. My gut was right because a month later he was admitted to the hospital for 16 days!

So right now I'm still trying to get settled in as the stay at home mom I always dreamed I would be. I keep waiting for things to come to some kind of resting point with Samren's health so that I can get to all of the fun stuff I thought this would entail! No doubt, there's still a lot of fun stuff--I just wish it could be the focus more (rather than doctor appointments and therapy sessions). I know that some full time moms say that they struggle with boredom, but I can't imagine getting bored right now! There's always so much on my plate! =-)

I mentioned in another post that my hubby is a Type I Diabetic. That makes life interesting sometimes. His retinas detached in both eyes about a week after our first date and our first 6 months together were dotted with 16 eye surgeries. Luckily, the last surgery, on the second eye FINALLY gave him some sight back (after being completely blind for 3 months). He sees about 20% from one eye--enough to see how beautiful his kiddos are, but not enough to see if I have make-up on or not. We got the word about a year ago that his kidneys are beginning to fail so within the next 3-4 years we should be getting close to him needing a kidney transplant. Other than that, he's doing okay.

I swear, sometimes when I think about my future all I see are medical bills and hospitals! But then I look at my two men (hubby and Samren) and it's all worth it. =-) Remind me of that next time I have a pity party though! LOL That's pretty much a picture of our family right now. We're used to taking it one day at a time with my hubby so in lots of ways the adjustment to including Samren into that train of thought should be easier on us than it might be on some other families.

Anita

[Guest guest]

Thanks . Good to know!

Anita

-----Original Message-----From:

Anita - If you have problems figuring out the "doctor language" just ask us. We have some nurses on the list and we'll try to help you through anything!