Re: Autoimmune Enteropathy--new member

[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!

[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!

[Guest guest]

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

Thanks for the welcome and the great suggestions Pam. I actually have already started a list for people with Autoimmune Enteropathy, but suspect I may be the only member for quite a while. It's good to know that eventually somebody who needs it might find it and join! I've started and/or moderate several international adoption related groups so having a support community to go to just feels second nature to me now. =-) I really like your idea about the website. Hubby is a computer programmer and can probably help with this. And after such a warm welcome, I can't imagine anybody would want to leave this group! I certainly don't!

Anita

[Guest guest]

Thought i would answer some of the questions i think christy answerd.... i hope they help. as far as i know EG is somewhat simmlar to Autoimmune Enteropathy... Kat

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"?

[Kat Mosch] A pred taper isent that bad if you do it slowly.. and Dr P will do it that way. I just did a 8 day course of pred, of 40mg daily for 8 days, and then stop. It makes me jittery at that does if i go off of it, also pred makes you hungry, or so i have found.

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! ;-) [Kat Mosch] What is a high dose for him? for me a high dose is 40 mg, i was ok, and not in pain at 15mg daily....

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

[Guest guest]

Oh another hubby who works in the tech sector! LOL my hubby is an Network adminsitrator for a small company, he dose some programming, and my father is a computer programer and tester (works for a bank right now, testing web banking software for them).....

always great to have a techie around...

Kat

-----Original Message-----From: A. Gillispie Sent: June 30, 2003 8:52 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

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

Thanks for the welcome and the great suggestions Pam. I actually have already started a list for people with Autoimmune Enteropathy, but suspect I may be the only member for quite a while. It's good to know that eventually somebody who needs it might find it and join! I've started and/or moderate several international adoption related groups so having a support community to go to just feels second nature to me now. =-) I really like your idea about the website. Hubby is a computer programmer and can probably help with this. And after such a warm welcome, I can't imagine anybody would want to leave this group! I certainly don't!

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

[Guest guest]

Definitely don't get caught up in the prognosis.

My hubby was diagnosed with Hep C in 1995. When I gathered all the info I could find on it at the time, the most optimistic prognosis I could find was that "some have been known to survive up to 5-7 years"! And I had to use the medical library at a local teaching hospital my home health agency was affiliated with to find that. At the time there wasn't a whole lot on the internet. I had just moved in a few months previous, after two divorces I had finally found the right guy, and now this. Well--he's on chemo right now (again) and not feeling too chipper, BUT aside from the Hep C he's healthy and when not on the meds is doing great. His liver disease from the Hep C remains at stage two after 8 years.The meds are a 48 week course and we have 43 weeks to go, but it usually improves after two months so in a few weeks he should be feeling somewhat better.

On the other hand we had a friend diagnosed about two years after him who is now dead. This friend came to talk to us after he was diagnosed and sat in our living room and said "This thing is a death sentence." He gave up immediately. After he left I told Denny that if our friend didn't change his attitude, it WOULD be a death sentence. He was dead within three years and his last three years were miserable.

Long way to say attitude really affects an illness' course, and children really pick up on our moods. On the other hand a "new body" really can fight off illness better than an old one.

I'm sure they'll find just the right treatment for him (even if it takes a few tries) and he'll turn into a healthy young man.

((((hugs))))

Kathy

RE: Autoimmune Enteropathy--new member

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!

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

[Guest guest]

Definitely don't get caught up in the prognosis.

My hubby was diagnosed with Hep C in 1995. When I gathered all the info I could find on it at the time, the most optimistic prognosis I could find was that "some have been known to survive up to 5-7 years"! And I had to use the medical library at a local teaching hospital my home health agency was affiliated with to find that. At the time there wasn't a whole lot on the internet. I had just moved in a few months previous, after two divorces I had finally found the right guy, and now this. Well--he's on chemo right now (again) and not feeling too chipper, BUT aside from the Hep C he's healthy and when not on the meds is doing great. His liver disease from the Hep C remains at stage two after 8 years.The meds are a 48 week course and we have 43 weeks to go, but it usually improves after two months so in a few weeks he should be feeling somewhat better.

On the other hand we had a friend diagnosed about two years after him who is now dead. This friend came to talk to us after he was diagnosed and sat in our living room and said "This thing is a death sentence." He gave up immediately. After he left I told Denny that if our friend didn't change his attitude, it WOULD be a death sentence. He was dead within three years and his last three years were miserable.

Long way to say attitude really affects an illness' course, and children really pick up on our moods. On the other hand a "new body" really can fight off illness better than an old one.

I'm sure they'll find just the right treatment for him (even if it takes a few tries) and he'll turn into a healthy young man.

((((hugs))))

Kathy

RE: Autoimmune Enteropathy--new member

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!

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

[Guest guest]

Anita-

When my son was 10 he got some kind of illness (never diagnosed "maybe a virus") that swelled the entire length of his small intestine shut. He was on TPN. Granted--only for about ten days, and not the duration your son is facing, but as a nurse sometimes I know too much about the bad side of things and his whole situation scared me to death.

Following his illness he didn't grow at all for two years after that. I was afraid that my boy was going to be 4'10.5" for the rest of his life, LOL. The Docs had told me that was a possibility because he was starting a growth spurt when the illness came. Long story short (oops, too late, LOL)

he is now 27 years old, healthy as a horse and 6' 2.5", LOL.

I know it's often easier said than done, but worry doesn't help anything. The best thing you can do for YOUR health --and consequently that of your family---is to train yourself to roll with the tides.

You haven't said, but do you work outside the home, or does Samren get you full-time?

Kathy

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]

Kat--If you decide that you need to go this way, and the Doc agrees---just my two cents but I'd go with a g-tube long before I'd live long term with an ng. There is no chance of pneumonia from the nutritional liquid going into your lungs, it's more comfortable (after it heals), and since it doesn't show it would interfere less with your life.

(((hugs))))

Kathy

RE: Autoimmune Enteropathy--new member

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]

Thanks Kat. Very helpful. =-)

Anita

-----Original Message-----From: Kat Mosch

Thought i would answer some of the questions i think christy answerd.... i hope they help. as far as i know EG is somewhat simmlar to Autoimmune Enteropathy... Kat

[Guest guest]

More similarities....my hubby is a bank techie as well! LOL ;-)

Anita

-----Original Message-----From: Kat Mosch

Oh another hubby who works in the tech sector! LOL my hubby is an Network adminsitrator for a small company, he dose some programming, and my father is a computer programer and tester (works for a bank right now, testing web banking software for them).....

always great to have a techie around...

Kat

[Guest guest]

Actually he was on it for 16 days, don't know what I was thinking.

Kathy

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]

Oh thats cool.. im heding down to visit my dad today, and im going to the thing where they say wether or not vancouver has the bid for the olympics....

What bank does you hubby work for and what does he do if you dont minde me asking?

Kat

-----Original Message-----From: A. Gillispie Sent: July 1, 2003 7:25 AMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

More similarities....my hubby is a bank techie as well! LOL ;-)

Anita

-----Original Message-----From: Kat Mosch

Oh another hubby who works in the tech sector! LOL my hubby is an Network adminsitrator for a small company, he dose some programming, and my father is a computer programer and tester (works for a bank right now, testing web banking software for them).....

always great to have a techie around...

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

[Guest guest]

My hubby works for the financial division of Bank of Oklahoma (which is really the "bank of..." in 16 different states). He is a "computer analyst". He creates programs for the bank to use for their intranet (I think!).

Anita

-----Original Message-----From: Kat Mosch

Oh thats cool.. im heding down to visit my dad today, and im going to the thing where they say wether or not vancouver has the bid for the olympics....

What bank does you hubby work for and what does he do if you dont minde me asking?

Kat

[Guest guest]

Tulsa, Oklahoma. So "cross country"

Anita, I live just east of Tulsa between Pryor and Salina! Hi neighbor! I love to eat at Zio's on 71st Street! I go to Doc's in Tulsa all the time!!! Oh wow! How long have you lived in Tulsa? My hubby and I both grew up in Oklahoma and after we married we moved to Sherman, TX for many years and finally when he got the chance at a job back in OK we jumped. My parents live near McAlester, and his lives near Atoka. I keep hearing about the Childrens Hospital in Arkansas and seeing them on TV, have you looked into that hospital? I may be wrong but I think its in Little Rock.

[Guest guest]

I thought about today and worried about her. I hope she's not going too all-out with the plans and not resting! Now, would she do something like that? hehehe

Re: Autoimmune Enteropathy--new member

Don't forget our lady doc, Chris. She must be really involved rightnow with the wedding or else she has had another medical problem sincewe haven't heard from her in about 10 days. Hope all is going okayfor 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 tryto help> you through anything!> > Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Anita, I wouldn't worry about that dosage at all. I know I'm bigger than Samren but I take 5 mg every day and have for years, tapered down to that from a high of 60 mg. And a 6-12 week taper from that is wonderful. Sounds like your doctor is on the ball! The side effects from prednisone are mostly from long-term usage and I don't think you would have any problems even daily at the amount he's going to be on. Withdrawals wouldn't even come into play after that short amount of time. After months or years on prednisone, your thyroid can slow down or stop and rely on the prednisone to work for it. There's also Cushing's Disease which shows itself in the form of a "moon face" in those of us on it for a long time or at high dosages. Then there's the weight gain (not a major concern for a baby but ask one of us "over 18" women LOL) and the mood swings (still not a concern with young children or anyone not yet married LOL)

It's not pleasant but, again, I don't think Samren will have any of these issues on his dosage or on the long taper rate.

I assume your job lead you to information about adopting your precious children? When we lived in Japan, there were several of our neighbors who were adopting children from Korea. I loved meeting the new kids and being a part of the community to welcome them to "our world!" I was so surprised that most of them were excited and happy, not worried or scared as I had envisioned.

Even with the autoimmune diseases, life as a stay-at-home-mom will settle down and you'll find your rhythm and find time to enjoy the fun aspects of life with the kids. I was a "busy executive" when I was diagnosed and, even with ME being the one with the diseases, becoming a stay at home mom to my then 14 and 11 year olds has opened my life to a world I never dreamed of enjoying! On good days, I actually do baking and crafts and stuff and try to involve my daughter's friends as much as possible so that they all hang out here rather than somewhere else. It's harder now with one daughter moved out and the youngest one at 16. They don't "need" me anymore. hehehe They think! I really think that God's entire purpose in my developing these diseases was to show me that my family should be first in my life, not work and school. I just wish He had found a less permanent way of opening my eyes!

I guess with your hubby (what's his name?) and Samren both needing your attention, it's tough to find some down time. How is your daughter adjusting to their needs versus her own? A two year old can be trying on her own, without figuring in another child and husband needing you.

We're great at having pity parties! We have Whine and Cheese parties too! Let us know when you need one and we'll rally the troops!

Welcome aboard again!

Christy

RE: Autoimmune Enteropathy--new member

-----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

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

[Guest guest]

Anita, I was working for a bank when I had to quit and go on disability! The best job I ever had, I had been there for just 2 years and the bank was exactly one mile from my front door. I loved the work and the people and the location and...... and then... whammo! I think I had let my job become too important. I was working on finishing up my degree and then I would be moving over to the computer portion of the bank from customer service and I would have been in charge of installing and implementing a brand new system in 14 bank locations. I was so excited! I quit work 2 weeks before I walked across the stage (with crutches) to accept my degree. What a slap in the face!

I'm so envious of your hubby! I'm sure he's grateful for his job as well. How does he manage it with his sight impairment?

RE: Autoimmune Enteropathy--new member

My hubby works for the financial division of Bank of Oklahoma (which is really the "bank of..." in 16 different states). He is a "computer analyst". He creates programs for the bank to use for their intranet (I think!).

Anita

-----Original Message-----From: Kat Mosch

Oh thats cool.. im heding down to visit my dad today, and im going to the thing where they say wether or not vancouver has the bid for the olympics....

What bank does you hubby work for and what does he do if you dont minde me asking?

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

[Guest guest]

Thanks for the advice and encouragement Kathy. I hope that Samren never has to go to TPN, but it's good to know that your son did fine on it and recovered fully from it.

I am a major worry-wart by nature, but I try hard not to let that get the best of me. If I know what I'm dealing with (or what he is dealing with in this case) I do okay. It's not having a good understanding of the *possible* characteristics of this disease that are getting the best of me a bit lately! But I learned a great deal from the experiences of getting both of my children home from SE Asia about the fact that sometimes we just have no control over things (hard to accept when you are a control freak!). It occurred to me yesterday that I need to look at Samren's illness like I looked at his adoption--that things are going to happen that are out of my control (but that are being controlled by someone greater than I--God!). I just need to accept it and learn to be ready to face each new challenge that may come his way. Thanks for the reminder.

Warmly,

Anita

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

Anita-

When my son was 10 he got some kind of illness (never diagnosed "maybe a virus") that swelled the entire length of his small intestine shut. He was on TPN. Granted--only for about ten days, and not the duration your son is facing, but as a nurse sometimes I know too much about the bad side of things and his whole situation scared me to death.

Following his illness he didn't grow at all for two years after that. I was afraid that my boy was going to be 4'10.5" for the rest of his life, LOL. The Docs had told me that was a possibility because he was starting a growth spurt when the illness came. Long story short (oops, too late, LOL)

he is now 27 years old, healthy as a horse and 6' 2.5", LOL.

I know it's often easier said than done, but worry doesn't help anything. The best thing you can do for YOUR health --and consequently that of your family---is to train yourself to roll with the tides.

You haven't said, but do you work outside the home, or does Samren get you full-time?

Kathy

[Guest guest]

Thanks for the advice and encouragement Kathy. I hope that Samren never has to go to TPN, but it's good to know that your son did fine on it and recovered fully from it.

I am a major worry-wart by nature, but I try hard not to let that get the best of me. If I know what I'm dealing with (or what he is dealing with in this case) I do okay. It's not having a good understanding of the *possible* characteristics of this disease that are getting the best of me a bit lately! But I learned a great deal from the experiences of getting both of my children home from SE Asia about the fact that sometimes we just have no control over things (hard to accept when you are a control freak!). It occurred to me yesterday that I need to look at Samren's illness like I looked at his adoption--that things are going to happen that are out of my control (but that are being controlled by someone greater than I--God!). I just need to accept it and learn to be ready to face each new challenge that may come his way. Thanks for the reminder.

Warmly,

Anita

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

Anita-

When my son was 10 he got some kind of illness (never diagnosed "maybe a virus") that swelled the entire length of his small intestine shut. He was on TPN. Granted--only for about ten days, and not the duration your son is facing, but as a nurse sometimes I know too much about the bad side of things and his whole situation scared me to death.

Following his illness he didn't grow at all for two years after that. I was afraid that my boy was going to be 4'10.5" for the rest of his life, LOL. The Docs had told me that was a possibility because he was starting a growth spurt when the illness came. Long story short (oops, too late, LOL)

he is now 27 years old, healthy as a horse and 6' 2.5", LOL.

I know it's often easier said than done, but worry doesn't help anything. The best thing you can do for YOUR health --and consequently that of your family---is to train yourself to roll with the tides.

You haven't said, but do you work outside the home, or does Samren get you full-time?

Kathy

[Guest guest]

WOW ! Small world! I was actually born and raised in Tulsa/Sand Springs area and have lived her as an adult except for the four years I was in Norman attending the University of Oklahoma. I really love this state! But I've got to admit, seeing how much better children's medical care in Ohio makes me see our doctors here in a pretty negative light. I hope you have a great adult doctor (!), but Samren's Ped. Gastroenterologist here is just horrible. We found out so many things that he has done to mismanage Samren's case while we were in Ohio at Cincinnati Children's last week. I'm even having thoughts of moving to Cincy just to be closer to Samren's doctors, but hubby would go into withdrawals not living in "Big 12 Country" (he's a huge OU/Big 12 sports fan, as am I actually!). So, for now we'll just enjoy living in our great state and travel elsewhere to get great medical care for Samren. ;-)

Yes, we've thought about Children's in Arkansas. It is SO well-respected, especially for Ped. cardiac care. But with the type of illness Samren has (GI) Cincinnati (and possibly Boston?) is "the" place to be. Really, his doc is so well-respected and one of the few docs qualified in the country to even be able to recognize his disease, let alone treat it effectively! I knew that Dr. Putnam was really well-respected by his patients and their parents but I don't think I realized how well-respected by his colleagues he is until we were in Cincy last week. Every other doctor/nurse/tech, etc. we met kept saying "You realize that your son is being seen by one of the best, don't you?" When the anesthesiologist told us that we said "Yes! We came all the way from OK to have Samren seen by him." to which the anesthesiologist promptly replied "And?....People come from all over the world to see him, so your jaunt from OK is really nothing." That one offended us a little bit because our 14 hour "jaunt" each way was something big (and expensive!) for us, but it did really hit home how very lucky Samren is to be treated by Dr. Putnam!

Anita

-----Original Message-----From: Sent: Tuesday, July 01, 2003 2:00 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

Tulsa, Oklahoma. So "cross country"

Anita, I live just east of Tulsa between Pryor and Salina! Hi neighbor! I love to eat at Zio's on 71st Street! I go to Doc's in Tulsa all the time!!! Oh wow! How long have you lived in Tulsa? My hubby and I both grew up in Oklahoma and after we married we moved to Sherman, TX for many years and finally when he got the chance at a job back in OK we jumped. My parents live near McAlester, and his lives near Atoka. I keep hearing about the Childrens Hospital in Arkansas and seeing them on TV, have you looked into that hospital? I may be wrong but I think its in Little Rock.

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

[Guest guest]

WOW ! Small world! I was actually born and raised in Tulsa/Sand Springs area and have lived her as an adult except for the four years I was in Norman attending the University of Oklahoma. I really love this state! But I've got to admit, seeing how much better children's medical care in Ohio makes me see our doctors here in a pretty negative light. I hope you have a great adult doctor (!), but Samren's Ped. Gastroenterologist here is just horrible. We found out so many things that he has done to mismanage Samren's case while we were in Ohio at Cincinnati Children's last week. I'm even having thoughts of moving to Cincy just to be closer to Samren's doctors, but hubby would go into withdrawals not living in "Big 12 Country" (he's a huge OU/Big 12 sports fan, as am I actually!). So, for now we'll just enjoy living in our great state and travel elsewhere to get great medical care for Samren. ;-)

Yes, we've thought about Children's in Arkansas. It is SO well-respected, especially for Ped. cardiac care. But with the type of illness Samren has (GI) Cincinnati (and possibly Boston?) is "the" place to be. Really, his doc is so well-respected and one of the few docs qualified in the country to even be able to recognize his disease, let alone treat it effectively! I knew that Dr. Putnam was really well-respected by his patients and their parents but I don't think I realized how well-respected by his colleagues he is until we were in Cincy last week. Every other doctor/nurse/tech, etc. we met kept saying "You realize that your son is being seen by one of the best, don't you?" When the anesthesiologist told us that we said "Yes! We came all the way from OK to have Samren seen by him." to which the anesthesiologist promptly replied "And?....People come from all over the world to see him, so your jaunt from OK is really nothing." That one offended us a little bit because our 14 hour "jaunt" each way was something big (and expensive!) for us, but it did really hit home how very lucky Samren is to be treated by Dr. Putnam!

Anita

-----Original Message-----From: Sent: Tuesday, July 01, 2003 2:00 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

Tulsa, Oklahoma. So "cross country"

Anita, I live just east of Tulsa between Pryor and Salina! Hi neighbor! I love to eat at Zio's on 71st Street! I go to Doc's in Tulsa all the time!!! Oh wow! How long have you lived in Tulsa? My hubby and I both grew up in Oklahoma and after we married we moved to Sherman, TX for many years and finally when he got the chance at a job back in OK we jumped. My parents live near McAlester, and his lives near Atoka. I keep hearing about the Childrens Hospital in Arkansas and seeing them on TV, have you looked into that hospital? I may be wrong but I think its in Little Rock.

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

[Guest guest]

Thanks for sharing this with me Kathy. You are SO right about positive thinking. My hubby was told last January that his Kidneys are beginning to fail (due to Diabetes) and that he had 3-5 years before he would need a transplant. Well, he just refuses to put all trust in "what the doctors say" and has done his best to keep himself as kidney-healthy as possible. When we went for 's annual appointment with the Kidney specialist this January, he was AMAZED at 's condition. It hasn't deteriorated at all. So, hopefully his "3-5 years" will be more like 30-50 years!

You all have been such a great source of strength and encouragement for me! Thanks for reminding me that I've got to teach Samren to look at things the same way we look at things regarding his dad's disease. We listen to what the docs say, follow their recommendations, but don't assume the prognosis!

Anita

mom to Samren (19 months, Autoimmune Enteropathy)

and Taevy (2.75 yrs and blessedly healthy!)

and wife to (Type I Diabetic for 21 years now, almost blind, slow kidney failure, but still pretty darn healthy!)

-----Original Message-----From: e O'Hara Sent: Tuesday, July 01, 2003 4:52 AMTo: autoimmune-ills Subject: Re: Autoimmune Enteropathy--new member

Definitely don't get caught up in the prognosis.

My hubby was diagnosed with Hep C in 1995. When I gathered all the info I could find on it at the time, the most optimistic prognosis I could find was that "some have been known to survive up to 5-7 years"! And I had to use the medical library at a local teaching hospital my home health agency was affiliated with to find that. At the time there wasn't a whole lot on the internet. I had just moved in a few months previous, after two divorces I had finally found the right guy, and now this. Well--he's on chemo right now (again) and not feeling too chipper, BUT aside from the Hep C he's healthy and when not on the meds is doing great. His liver disease from the Hep C remains at stage two after 8 years.The meds are a 48 week course and we have 43 weeks to go, but it usually improves after two months so in a few weeks he should be feeling somewhat better.

On the other hand we had a friend diagnosed about two years after him who is now dead. This friend came to talk to us after he was diagnosed and sat in our living room and said "This thing is a death sentence." He gave up immediately. After he left I told Denny that if our friend didn't change his attitude, it WOULD be a death sentence. He was dead within three years and his last three years were miserable.

Long way to say attitude really affects an illness' course, and children really pick up on our moods. On the other hand a "new body" really can fight off illness better than an old one.

I'm sure they'll find just the right treatment for him (even if it takes a few tries) and he'll turn into a healthy young man.

((((hugs))))

Kathy

[Guest guest]

I was always pretty laid back by nature . As far as not worrying anyway, LOL--I DID tend to be a bit of a workaholic when I was able to work, and a bit of a perfectionist about some things, but was someone that rolled with the punches life threw my way. Actually , with the kind of work I did (home health RN) it was a requirement of the job to be able to roll with it--schedule changes, improvising equipment, etc. I've found that has been amplified since I've been ill. At first I was on a mission to get a diagnosis--which I still don't entirely have--and became a fanatic at charting symptoms, etc. I still keep a list of things for my Doc appt, and copies of my medical records, but I'm at a point where what is-is. I work at my treatment plan (exercise, meditation, meds, etc) but try not to have my life obsessed by my illness.

That's easier when it's me, than when it's a child. Actually, I was more freaked out by my daughter Kayly's illness than by mine. She's on this list, and in fact got me involved with it. It's just a lot harder to see a young person ill, especially your own child.

Kathy

RE: Autoimmune Enteropathy--new member

Thanks for the advice and encouragement Kathy. I hope that Samren never has to go to TPN, but it's good to know that your son did fine on it and recovered fully from it.

I am a major worry-wart by nature, but I try hard not to let that get the best of me. If I know what I'm dealing with (or what he is dealing with in this case) I do okay. It's not having a good understanding of the *possible* characteristics of this disease that are getting the best of me a bit lately! But I learned a great deal from the experiences of getting both of my children home from SE Asia about the fact that sometimes we just have no control over things (hard to accept when you are a control freak!). It occurred to me yesterday that I need to look at Samren's illness like I looked at his adoption--that things are going to happen that are out of my control (but that are being controlled by someone greater than I--God!). I just need to accept it and learn to be ready to face each new challenge that may come his way. Thanks for the reminder.

Warmly,

Anita

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

Anita-

When my son was 10 he got some kind of illness (never diagnosed "maybe a virus") that swelled the entire length of his small intestine shut. He was on TPN. Granted--only for about ten days, and not the duration your son is facing, but as a nurse sometimes I know too much about the bad side of things and his whole situation scared me to death.

Following his illness he didn't grow at all for two years after that. I was afraid that my boy was going to be 4'10.5" for the rest of his life, LOL. The Docs had told me that was a possibility because he was starting a growth spurt when the illness came. Long story short (oops, too late, LOL)

he is now 27 years old, healthy as a horse and 6' 2.5", LOL.

I know it's often easier said than done, but worry doesn't help anything. The best thing you can do for YOUR health --and consequently that of your family---is to train yourself to roll with the tides.

You haven't said, but do you work outside the home, or does Samren get you full-time?

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

[Guest guest]

I was always pretty laid back by nature . As far as not worrying anyway, LOL--I DID tend to be a bit of a workaholic when I was able to work, and a bit of a perfectionist about some things, but was someone that rolled with the punches life threw my way. Actually , with the kind of work I did (home health RN) it was a requirement of the job to be able to roll with it--schedule changes, improvising equipment, etc. I've found that has been amplified since I've been ill. At first I was on a mission to get a diagnosis--which I still don't entirely have--and became a fanatic at charting symptoms, etc. I still keep a list of things for my Doc appt, and copies of my medical records, but I'm at a point where what is-is. I work at my treatment plan (exercise, meditation, meds, etc) but try not to have my life obsessed by my illness.

That's easier when it's me, than when it's a child. Actually, I was more freaked out by my daughter Kayly's illness than by mine. She's on this list, and in fact got me involved with it. It's just a lot harder to see a young person ill, especially your own child.

Kathy

RE: Autoimmune Enteropathy--new member

Thanks for the advice and encouragement Kathy. I hope that Samren never has to go to TPN, but it's good to know that your son did fine on it and recovered fully from it.

I am a major worry-wart by nature, but I try hard not to let that get the best of me. If I know what I'm dealing with (or what he is dealing with in this case) I do okay. It's not having a good understanding of the *possible* characteristics of this disease that are getting the best of me a bit lately! But I learned a great deal from the experiences of getting both of my children home from SE Asia about the fact that sometimes we just have no control over things (hard to accept when you are a control freak!). It occurred to me yesterday that I need to look at Samren's illness like I looked at his adoption--that things are going to happen that are out of my control (but that are being controlled by someone greater than I--God!). I just need to accept it and learn to be ready to face each new challenge that may come his way. Thanks for the reminder.

Warmly,

Anita

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

Anita-

When my son was 10 he got some kind of illness (never diagnosed "maybe a virus") that swelled the entire length of his small intestine shut. He was on TPN. Granted--only for about ten days, and not the duration your son is facing, but as a nurse sometimes I know too much about the bad side of things and his whole situation scared me to death.

Following his illness he didn't grow at all for two years after that. I was afraid that my boy was going to be 4'10.5" for the rest of his life, LOL. The Docs had told me that was a possibility because he was starting a growth spurt when the illness came. Long story short (oops, too late, LOL)

he is now 27 years old, healthy as a horse and 6' 2.5", LOL.

I know it's often easier said than done, but worry doesn't help anything. The best thing you can do for YOUR health --and consequently that of your family---is to train yourself to roll with the tides.

You haven't said, but do you work outside the home, or does Samren get you full-time?

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