Re: Autoimmune diseases & PSC

[Guest guest]

Sorry - only one more I can add. I'll use " Other "

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of Arne

I'm setting up a poll for this topic. I'll limit it to the following 24 conditions. According to posts (that I've noticed), members have reported the following autoimmune diseases:

PSC

UC

Crohn's

AIH

's disease

Ankylosing spondylitis (Spondyloarthropathy)

Asthma

Autoimmune pancreatitis

Celiac

Endometriosis

Fibromyalgia

Gilbert's syndrome

Graves' disease

Hypothroidism

Juvenile diabetes

Lupus

Multiple Sclerosis

PBC

Polyarteritis nodosa

Psoriasis

Raynauds phenomenon

Rheumatroid arthritis

Sjogren's syndrome

Uveitis

I can add 5 more if someone expresses a specific interest.

[Guest guest]

Hi Arne

Is osteoporosis considered to be autoimmune as well?

[Guest guest]

Arne--

There is some suspicion that I may have Behcet's, given the severe,

deep, recurring ulcers in my mouth.

Interestingly, several doctors have mentioned that they would expect

the Behcet's to go away once I'm on the anti-rejection meds. This

proved to be an argument for transplant that doesn't get counted in the

MELD score, since that condition has landed me in the hospital every 4-

6 weeks this year.

To be sure, there are no definitive conclusions here, but I like the

theory. I guess we'll find out the answer after the transplant.

Tom

PSC 1999

Crohns 2005

[Guest guest]

Hi Arne

> For us (UC, PSC), it's almost always the result of inefficient

processing of nutrients due to decreased liver function and UC. This

may be exacerbated by the use of steroids to control the UC.

>

>

> Arne

> 57 - UC 1977 - PSC 2000

> Alive and well in Minnesota

>

Seeing as I've not had to take steroids for my UC, I guess I just fit

into the " garden-variety " of osteoporosis... At least, if nothing

else, the Actonel seems to be helping marginally after taking it for

just over a year. I should probably modify my response to the poll I

did since I wasn't sure whether to include the osteo under the " other "

category.

[Guest guest]

HAs anyone noticed that their children become more paranoid and fearful of things with mood swings not able to adjust to change well? I believe my son has some tendencies of OCD or ADHD... We are going to see a counselour next week. He has PSC, UC and osteoporosis (all are doing well now ) since the mounds of meds and doctors over the last year....Now, he is on Urso, Singulair and Azacol only. Steroids have been done for over 3-4 months. HELP???

Very bright-academically not affected yet, but he talks out of turn constantly in the class room, disorganized and so on..i

Stevie Ostos (mother to Tyler age 10 )

[Guest guest]

I'm quite certain that (who already had ADHD) has developed PTSD (Post Traumatic Stress Disorder) because of the last 3-4 years. It's a bit of a problem, however, finding someone to treat him for it, even though his regular doc agrees with me. He has got an extremely short fuse at home, though at school he's okay. I think he puts enough energy into being good at school that he can't anymore by the time he gets home. Not that he's NAUGHTY. But any little tiny thing sets him off into crying, etc. And it's not really stuff that has to do with whether or not he's getting his way. More like other things - can't find the right word. Last of the milk is gone. Extremely frustrated over his homework, being sure he doesn't know the answer, when he does, but expects it there instantaneously. He HAD been displaying some OCD tendencies, though they seem to have calmed down. He also may

have trictillomania (compulsive hair pulling), which I thought in him was an anxious thing, but the counselor thinks it may be this condition, which needs more dealing with. I can't generally let his hair grow out, anymore, because he will pull it out until he has bald patches. The stress and strain of being ill, sometimes close to death, and having NO CONTROL of what's happening to you is hard enough on an adult. Now place that into a child, who has even less control, because the parents are generally making the decisions for them, and there are going to be emotional ramifications. AmiStevie Gedgaudas wrote: HAs anyone noticed that their children become more paranoid and fearful of things with mood swings not able to adjust to change well? I believe my son has some tendencies of OCD or ADHD... We are going to see a counselour next week. He has PSC, UC and osteoporosis (all are doing well now ) since the mounds of meds and doctors over the last year....Now, he is on Urso, Singulair and Azacol only. Steroids have been done for over 3-4 months. HELP???Very bright-academically not affected yet, but he talks out of turn constantly in the class room, disorganized and so on..iStevie Ostos (mother to Tyler age 10 )Ami - Migraines, FMSmom to - 10 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADHD, Osteopenia http://caringbridge.org/visit/seanfoxmom to Emma - 14 yrs - Migrainesstepmom to - 15 yrs - ADHD, ODD~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

[Guest guest]

I'm quite certain that (who already had ADHD) has developed PTSD (Post Traumatic Stress Disorder) because of the last 3-4 years. It's a bit of a problem, however, finding someone to treat him for it, even though his regular doc agrees with me. He has got an extremely short fuse at home, though at school he's okay. I think he puts enough energy into being good at school that he can't anymore by the time he gets home. Not that he's NAUGHTY. But any little tiny thing sets him off into crying, etc. And it's not really stuff that has to do with whether or not he's getting his way. More like other things - can't find the right word. Last of the milk is gone. Extremely frustrated over his homework, being sure he doesn't know the answer, when he does, but expects it there instantaneously. He HAD been displaying some OCD tendencies, though they seem to have calmed down. He also may

have trictillomania (compulsive hair pulling), which I thought in him was an anxious thing, but the counselor thinks it may be this condition, which needs more dealing with. I can't generally let his hair grow out, anymore, because he will pull it out until he has bald patches. The stress and strain of being ill, sometimes close to death, and having NO CONTROL of what's happening to you is hard enough on an adult. Now place that into a child, who has even less control, because the parents are generally making the decisions for them, and there are going to be emotional ramifications. AmiStevie Gedgaudas wrote: HAs anyone noticed that their children become more paranoid and fearful of things with mood swings not able to adjust to change well? I believe my son has some tendencies of OCD or ADHD... We are going to see a counselour next week. He has PSC, UC and osteoporosis (all are doing well now ) since the mounds of meds and doctors over the last year....Now, he is on Urso, Singulair and Azacol only. Steroids have been done for over 3-4 months. HELP???Very bright-academically not affected yet, but he talks out of turn constantly in the class room, disorganized and so on..iStevie Ostos (mother to Tyler age 10 )Ami - Migraines, FMSmom to - 10 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADHD, Osteopenia http://caringbridge.org/visit/seanfoxmom to Emma - 14 yrs - Migrainesstepmom to - 15 yrs - ADHD, ODD~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

[Guest guest]

Stevie,

Is HE (Hepatic Encephalotapy) a possibility?

If the liver is not capable of filtering the blood enough (ammonia for example)

this can cause problems with brain function. It sounds like it is not, since

you state that academically he is fine. Just something to look into.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of Stevie Gedgaudas

Sent: Tuesday, June 03, 2008 18:59

To:

Subject: Re:

Autoimmune diseases & PSC

HAs anyone noticed that their children become more paranoid and fearful of

things with mood swings not able to adjust to change well? I believe my son has

some tendencies of OCD or ADHD... We are going to see a counselour next week.

He has PSC, UC and osteoporosis (all are doing well now ) since the mounds of

meds and doctors over the last year....Now, he is on Urso, Singulair and Azacol

only. Steroids have been done for over 3-4 months. HELP???

Very bright-academically not affected yet, but he talks out of turn constantly

in the class room, disorganized and so on..i

Stevie Ostos (mother to Tyler

age 10 )

[Guest guest]

Stevie,

Is HE (Hepatic Encephalotapy) a possibility?

If the liver is not capable of filtering the blood enough (ammonia for example)

this can cause problems with brain function. It sounds like it is not, since

you state that academically he is fine. Just something to look into.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of Stevie Gedgaudas

Sent: Tuesday, June 03, 2008 18:59

To:

Subject: Re:

Autoimmune diseases & PSC

HAs anyone noticed that their children become more paranoid and fearful of

things with mood swings not able to adjust to change well? I believe my son has

some tendencies of OCD or ADHD... We are going to see a counselour next week.

He has PSC, UC and osteoporosis (all are doing well now ) since the mounds of

meds and doctors over the last year....Now, he is on Urso, Singulair and Azacol

only. Steroids have been done for over 3-4 months. HELP???

Very bright-academically not affected yet, but he talks out of turn constantly

in the class room, disorganized and so on..i

Stevie Ostos (mother to Tyler

age 10 )

[Guest guest]

Stevie,

Is HE (Hepatic Encephalotapy) a possibility?

If the liver is not capable of filtering the blood enough (ammonia for example)

this can cause problems with brain function. It sounds like it is not, since

you state that academically he is fine. Just something to look into.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of Stevie Gedgaudas

Sent: Tuesday, June 03, 2008 18:59

To:

Subject: Re:

Autoimmune diseases & PSC

HAs anyone noticed that their children become more paranoid and fearful of

things with mood swings not able to adjust to change well? I believe my son has

some tendencies of OCD or ADHD... We are going to see a counselour next week.

He has PSC, UC and osteoporosis (all are doing well now ) since the mounds of

meds and doctors over the last year....Now, he is on Urso, Singulair and Azacol

only. Steroids have been done for over 3-4 months. HELP???

Very bright-academically not affected yet, but he talks out of turn constantly

in the class room, disorganized and so on..i

Stevie Ostos (mother to Tyler

age 10 )