Re: Autoimmune Enteropathy--new member

[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 know,... im pushing for him to tube me, but he wants me to drink it out of the can.. the stuff is nasty, and it comes out chunky some times, and the expire date is still good.. *sigh*

Kat

-----Original Message-----From: e O'Hara Sent: July 1, 2003 3:08 AMTo: autoimmune-ills Subject: Re: Autoimmune Enteropathy--new member

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]

Anita - After I looked around on the Children Hopsital of AR site I realized that it looked like they didn't have the means to deal with Samren's illness. Thank goodness that you found Dr. Putnam! I understand your reaction to the comment about your jaunt! I would feel like that to, okay so you didn't travel around the world to get there, but it was that big of a journey for you and your family. Let stuff like that slide off you, you have enough to deal with. Hang in there!

[Guest guest]

Kat - I can't imagine having to drink some nasty chunky stuff. That enough is horrible. It gives me chills to think about it. Don't they have any other flavors??

[Guest guest]

Kat - I can't imagine having to drink some nasty chunky stuff. That enough is horrible. It gives me chills to think about it. Don't they have any other flavors??

[Guest guest]

Kat - I can't imagine having to drink some nasty chunky stuff. That enough is horrible. It gives me chills to think about it. Don't they have any other flavors??

[Guest guest]

Anita,

Welcome. Can't help with that particular disease, but if you need help with the medical speak in the article you found, MedicineNet has a medical dictionary that I have found helpful in the past. Good luck!

Deb

RE: Autoimmune Enteropathy--new member

AThanks 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]

The only flavor that they "send" me or they can "order" is the orange...

its realy grose... i have to wait for this dr to get into town till i can get approvle for it...

i have to jet now, i just got up from a nap after all this olympic stuff, and im soo tired still, and dizzy, im heading back to bed,,,,,

Kat

-----Original Message-----From: Sent: July 2, 2003 1:14 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

Kat - I can't imagine having to drink some nasty chunky stuff. That enough is horrible. It gives me chills to think about it. Don't they have any other flavors??

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

[Guest guest]

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

Okay, LOL! This is TOTALLY how I've been with Samren. I have a food intake diary, a symptom diary, a behavior change, diary, you name it and I've got it! And now that he has started the steroids I'm SO tempted to start a log about every little thing he does (trying to track side effects), but our doctor said NOT to drive ourselves crazy with it. He said we should try to do this as a "Gestalt thing"--in other words, look at Samren's whole person (body, mind, spirit) and then evaluate how he's doing as a whole week by week. Now that I've heard from so many of you how important it is for me not to get so obsessed with the details I can't control, I see that Samren's GI's instructions where meant as a way to protect us from driving ourselves crazy with worry (looking for things to go wrong).

Unlike you Kathy, I really struggle with stress, worry, and control. I envy people like you!!! ;-)

Anita

[Guest guest]

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

Okay, LOL! This is TOTALLY how I've been with Samren. I have a food intake diary, a symptom diary, a behavior change, diary, you name it and I've got it! And now that he has started the steroids I'm SO tempted to start a log about every little thing he does (trying to track side effects), but our doctor said NOT to drive ourselves crazy with it. He said we should try to do this as a "Gestalt thing"--in other words, look at Samren's whole person (body, mind, spirit) and then evaluate how he's doing as a whole week by week. Now that I've heard from so many of you how important it is for me not to get so obsessed with the details I can't control, I see that Samren's GI's instructions where meant as a way to protect us from driving ourselves crazy with worry (looking for things to go wrong).

Unlike you Kathy, I really struggle with stress, worry, and control. I envy people like you!!! ;-)

Anita

[Guest guest]

-----Original Message-----From: I understand your reaction to the comment about your jaunt! I would feel like that to, okay so you didn't travel around the world to get there, but it was that big of a journey for you and your family. Let stuff like that slide off you, you have enough to deal with. Hang in there!

Yeah, believe me. That wasn't something that got more than a "Well, excuse us!" thought from my hubby and I. There was definitely way too much going on to focus on something like that. After all, the guy wasn't trying to be rude--just stating fact. =-)

Anita

[Guest guest]

-----Original Message-----From: I understand your reaction to the comment about your jaunt! I would feel like that to, okay so you didn't travel around the world to get there, but it was that big of a journey for you and your family. Let stuff like that slide off you, you have enough to deal with. Hang in there!

Yeah, believe me. That wasn't something that got more than a "Well, excuse us!" thought from my hubby and I. There was definitely way too much going on to focus on something like that. After all, the guy wasn't trying to be rude--just stating fact. =-)

Anita

[Guest guest]

Thanks for the tip Deb. I'll be sure to check that out. =-)

Anita

-----Original Message-----From: Deborah K Lanham Sent: Wednesday, July 02, 2003 7:22 PMTo: autoimmune-ills Subject: Re: Autoimmune Enteropathy--new member

Anita,

Welcome. Can't help with that particular disease, but if you need help with the medical speak in the article you found, MedicineNet has a medical dictionary that I have found helpful in the past. Good luck!

Deb

RE: Autoimmune Enteropathy--new member

AThanks 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]

A laid back nurse, Kathy? HA! LOL. Fonda

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]

A laid back nurse, Kathy? HA! LOL. Fonda

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]

Kat--They showed the announcement on our local news last night! Quite a crowd there!

Kathy

RE: Autoimmune Enteropathy--new member

The only flavor that they "send" me or they can "order" is the orange...

its realy grose... i have to wait for this dr to get into town till i can get approvle for it...

i have to jet now, i just got up from a nap after all this olympic stuff, and im soo tired still, and dizzy, im heading back to bed,,,,,

Kat

-----Original Message-----From: Sent: July 2, 2003 1:14 PMTo: autoimmune-ills Subject: RE: Autoimmune Enteropathy--new member

Kat - I can't imagine having to drink some nasty chunky stuff. That enough is horrible. It gives me chills to think about it. Don't they have any other flavors??

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

[Guest guest]

Stress I get--that's part of living--I just find that it isn't quite as bad when I accept that I can't change it much.

I know it's hokey, but my hubby has a copy of the serenity prayer hanging---hmmmm, no he doesn't, LOL--I forgot I removed it when I redecorated, LOL. Well, anyway--it's a good thing to remember. There just are things we can't control.

I'm sure part of the reason for the GI's instructions was so you wouldn't drive yourself crazy; but I think the view of the person as a whole is much healthier anyway.

Sometimes we forget that God --or whatever we chose to call the universe, higher power, whatever--has a way of using one aspect of the body - mind- spirit to balance us when another aspect is "out of whack". Hmmm--don't know if it's clear what I mean there, but for an extreme example think Hawking.

I'm finding through my meditation and my spiritual search that the "body" stuff is much easier to bear when the mind is kept active elsewhere and the spirit is --at a minimum--acknowledged.

Probably getting way too "new age" here, LOL--but I'm sure you see where I'm going with that.

Also, I find that it is far easier to let go of the worry and control living out here in the woods, not being able to work anymore and accepting what comes. Part of that I'm sure has come with age.

My daughter is only 31, has two boys 7 and 9 and has to deal with all this health stuff---I don't know how I would have done at her age.

Kathy

RE: Autoimmune Enteropathy--new member

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

Okay, LOL! This is TOTALLY how I've been with Samren. I have a food intake diary, a symptom diary, a behavior change, diary, you name it and I've got it! And now that he has started the steroids I'm SO tempted to start a log about every little thing he does (trying to track side effects), but our doctor said NOT to drive ourselves crazy with it. He said we should try to do this as a "Gestalt thing"--in other words, look at Samren's whole person (body, mind, spirit) and then evaluate how he's doing as a whole week by week. Now that I've heard from so many of you how important it is for me not to get so obsessed with the details I can't control, I see that Samren's GI's instructions where meant as a way to protect us from driving ourselves crazy with worry (looking for things to go wrong).

Unlike you Kathy, I really struggle with stress, worry, and control. I envy people like you!!! ;-)

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

[Guest guest]

That' s what my one instructor said when I was in nursing school, LOL. She was one of those perpetual motion machines. She hadn't had me in a classroom, or any clinical area before. At my final eval from her she asked if I did yoga or meditated. At the time I did yoga, but not meditation, just some occasional prayer. Anyway she said she thought when I came into her rotation that I was way too laid back and would never be able to keep up and get everything done, but that I not only got my stuff done and had extra time to spend with my patients, but also had time to help some of the other student nurses.

I've just been that way most of my life.

I'm not saying I never felt stressed, lost my temper, or any of that stuff--just that I roll with the punches more than some. When I had to work an extra shift or something, I just did it and had far less stress about it than most.

I'm sure you're more laid back than you think---nurses all have to be adaptable to change because we never know what's going to happen next, and that's a big part of it.

That said--I have had my moments--after all I raised two kids who survived to adulthood, LOL. And I've been divorced twice. Believe me when the kids Dad said he wanted a divorce after ten years--two weeks AFTER I'd quit my job to go back to school, and I had a 5 and a 9 year old--I yelled, screamed, hit, cursed, cried and was anything but laid back. And the second one was probably even more of a blow because we'd had ten relatively good years (well, nine--the last year of it sucked) and who wants to be a two -time loser.

Now I just figure I'd learned what I needed to learn from those marriages and if I hadn't gone through that all I'd never have met Denny, who is undoubtedly my soul-mate. 'Course I have prepared him that when we reach the 10 year mark I might act crazy because that was the end of the first two and I'll be waiting for a bomb to drop, LOL.

July 12 is 6 years of marriage, 8 years of living together---so do I count 2007 or 2005 as the worry -year, LOL? I never did the living together thing before.

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