Re: Introduction - new parent

[Guest guest]

h also knows everything and then some and is also not footing the bill.

She had Spring break this past week and took the time to go visit a friend in california. They went to Disneyland and Knotsberry farm. It was a well needed break I think that freshman year is really hard on the kids.

h also does a lot of cooking in her room because the dorm food is "icky and not very healthy" h has a little fridge and a microwave and takes back containers of homemade soup and stuff when she goes back. It must be hard for your daughter with the choices they have in the cafeateria.

Maybe if alot of the kids went home for Spring break it is quiet and she is having an easier time catching up on her makeup work. I don't know if her school has it, but MSU has learning centers for math, english, physics and engineering where the kids can go to get help. h struggles with Math and has been to the learning center for math she also said that the English Center will proof papers.

To: Sent: Sunday, March 22, 2009 1:24:30 PMSubject: Re: Introduction - new parent

Yeah - it's pretty typical. Not only bulletproof - BUT they know everything. But she's not footing the bill. It's spring break - she'll be home for a couple of days (after she finishes her winter term project that all this fatigue, viruses, and diagnostic nonsense kept her from finishing). We'll have a little chance to talk - which we really haven't had since she was diagnosed. I called last night. Since the food service is closed down she's cooking for herself until Wednesday. She sounded happier than I've heard her in a long time. She had just chopped up a hunks of ginger and garlic, cooked a pot of brown rice and was staring at green onions wondering how to chop them (and wondering what the difference was between sauteeing and stir frying). I didn't have the heart to ask her how all her make-up work was coming along...

[Guest guest]

h also knows everything and then some and is also not footing the bill.

She had Spring break this past week and took the time to go visit a friend in california. They went to Disneyland and Knotsberry farm. It was a well needed break I think that freshman year is really hard on the kids.

h also does a lot of cooking in her room because the dorm food is "icky and not very healthy" h has a little fridge and a microwave and takes back containers of homemade soup and stuff when she goes back. It must be hard for your daughter with the choices they have in the cafeateria.

Maybe if alot of the kids went home for Spring break it is quiet and she is having an easier time catching up on her makeup work. I don't know if her school has it, but MSU has learning centers for math, english, physics and engineering where the kids can go to get help. h struggles with Math and has been to the learning center for math she also said that the English Center will proof papers.

To: Sent: Sunday, March 22, 2009 1:24:30 PMSubject: Re: Introduction - new parent

Yeah - it's pretty typical. Not only bulletproof - BUT they know everything. But she's not footing the bill. It's spring break - she'll be home for a couple of days (after she finishes her winter term project that all this fatigue, viruses, and diagnostic nonsense kept her from finishing). We'll have a little chance to talk - which we really haven't had since she was diagnosed. I called last night. Since the food service is closed down she's cooking for herself until Wednesday. She sounded happier than I've heard her in a long time. She had just chopped up a hunks of ginger and garlic, cooked a pot of brown rice and was staring at green onions wondering how to chop them (and wondering what the difference was between sauteeing and stir frying). I didn't have the heart to ask her how all her make-up work was coming along...

[Guest guest]

h also knows everything and then some and is also not footing the bill.

She had Spring break this past week and took the time to go visit a friend in california. They went to Disneyland and Knotsberry farm. It was a well needed break I think that freshman year is really hard on the kids.

h also does a lot of cooking in her room because the dorm food is "icky and not very healthy" h has a little fridge and a microwave and takes back containers of homemade soup and stuff when she goes back. It must be hard for your daughter with the choices they have in the cafeateria.

Maybe if alot of the kids went home for Spring break it is quiet and she is having an easier time catching up on her makeup work. I don't know if her school has it, but MSU has learning centers for math, english, physics and engineering where the kids can go to get help. h struggles with Math and has been to the learning center for math she also said that the English Center will proof papers.

To: Sent: Sunday, March 22, 2009 1:24:30 PMSubject: Re: Introduction - new parent

Yeah - it's pretty typical. Not only bulletproof - BUT they know everything. But she's not footing the bill. It's spring break - she'll be home for a couple of days (after she finishes her winter term project that all this fatigue, viruses, and diagnostic nonsense kept her from finishing). We'll have a little chance to talk - which we really haven't had since she was diagnosed. I called last night. Since the food service is closed down she's cooking for herself until Wednesday. She sounded happier than I've heard her in a long time. She had just chopped up a hunks of ginger and garlic, cooked a pot of brown rice and was staring at green onions wondering how to chop them (and wondering what the difference was between sauteeing and stir frying). I didn't have the heart to ask her how all her make-up work was coming along...

[Guest guest]

The liver related labs actually turned out not to be too expensive - mostly because the GI doc didn't really think anything serious was going on so he was ordering very general tests (ALT, AST, and GGT). I was just really grouchy that no one could even give me even a ballpark idea so I could make an informed decision. (Before I gave up, I talked to five different entities - the insurance company, a second insurance company my insruance company contracts with for secondary benefits, and an entity that coordinates that second's company's benefits with my insurance company, the lab, and the entity the lab contracts with to set fees. Each one pointed at others, or needed coding numbers I didn't have that they couldn't tell me how to find because they weren't uniform and some were generated by the doctor, the lab, or one or the other of the two

insurance companies involved). I'm sure you've been there. I finally found on-line prices for the tests and decided they were in the ballpark where it made more sense to pay 10% than to drive 160 miles.Now that we finally have the first bills (a month and a half after the first of several sets of repeated tests), the tests seem to run in the $100-$125 range. I can't drive my car 160 miles for $30-$40 (my share of the cost for the tests he typically runs), particularly if I figure in anything for my time.Once the GGT was higher than he expected, we moved right to MRCP and liver biopsy - both of which were costly enough it that was clearly worth it to drive and pick her up for.As to viruses - I'll have her watch that to see if there is a correlation. She doesn't typically get viruses, and whatever she had from December 22-late January was certainly not typical for her.Subject: RE: Introduction - new parentTo: Date: Sunday, March 22, 2009, 9:54 AM

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The labs your daughter had done were probably very costly and I would bet that you benefited by driving and saving the 10% extra. The initial labs done while working up PSC include some specialized, expensive stuff.One last thought - you mentioned your daughter had lots of viral infections. I don't know if there is any scientific evidence, but Joe's experience is that whenever he gets a virus, it lasts much longer than it does for anyone else (which is a real pain).

Hope you all can have a good Sunday.

[Guest guest]

The liver related labs actually turned out not to be too expensive - mostly because the GI doc didn't really think anything serious was going on so he was ordering very general tests (ALT, AST, and GGT). I was just really grouchy that no one could even give me even a ballpark idea so I could make an informed decision. (Before I gave up, I talked to five different entities - the insurance company, a second insurance company my insruance company contracts with for secondary benefits, and an entity that coordinates that second's company's benefits with my insurance company, the lab, and the entity the lab contracts with to set fees. Each one pointed at others, or needed coding numbers I didn't have that they couldn't tell me how to find because they weren't uniform and some were generated by the doctor, the lab, or one or the other of the two

insurance companies involved). I'm sure you've been there. I finally found on-line prices for the tests and decided they were in the ballpark where it made more sense to pay 10% than to drive 160 miles.Now that we finally have the first bills (a month and a half after the first of several sets of repeated tests), the tests seem to run in the $100-$125 range. I can't drive my car 160 miles for $30-$40 (my share of the cost for the tests he typically runs), particularly if I figure in anything for my time.Once the GGT was higher than he expected, we moved right to MRCP and liver biopsy - both of which were costly enough it that was clearly worth it to drive and pick her up for.As to viruses - I'll have her watch that to see if there is a correlation. She doesn't typically get viruses, and whatever she had from December 22-late January was certainly not typical for her.Subject: RE: Introduction - new parentTo: Date: Sunday, March 22, 2009, 9:54 AM

-

The labs your daughter had done were probably very costly and I would bet that you benefited by driving and saving the 10% extra. The initial labs done while working up PSC include some specialized, expensive stuff.One last thought - you mentioned your daughter had lots of viral infections. I don't know if there is any scientific evidence, but Joe's experience is that whenever he gets a virus, it lasts much longer than it does for anyone else (which is a real pain).

Hope you all can have a good Sunday.

[Guest guest]

The liver related labs actually turned out not to be too expensive - mostly because the GI doc didn't really think anything serious was going on so he was ordering very general tests (ALT, AST, and GGT). I was just really grouchy that no one could even give me even a ballpark idea so I could make an informed decision. (Before I gave up, I talked to five different entities - the insurance company, a second insurance company my insruance company contracts with for secondary benefits, and an entity that coordinates that second's company's benefits with my insurance company, the lab, and the entity the lab contracts with to set fees. Each one pointed at others, or needed coding numbers I didn't have that they couldn't tell me how to find because they weren't uniform and some were generated by the doctor, the lab, or one or the other of the two

insurance companies involved). I'm sure you've been there. I finally found on-line prices for the tests and decided they were in the ballpark where it made more sense to pay 10% than to drive 160 miles.Now that we finally have the first bills (a month and a half after the first of several sets of repeated tests), the tests seem to run in the $100-$125 range. I can't drive my car 160 miles for $30-$40 (my share of the cost for the tests he typically runs), particularly if I figure in anything for my time.Once the GGT was higher than he expected, we moved right to MRCP and liver biopsy - both of which were costly enough it that was clearly worth it to drive and pick her up for.As to viruses - I'll have her watch that to see if there is a correlation. She doesn't typically get viruses, and whatever she had from December 22-late January was certainly not typical for her.Subject: RE: Introduction - new parentTo: Date: Sunday, March 22, 2009, 9:54 AM

-

The labs your daughter had done were probably very costly and I would bet that you benefited by driving and saving the 10% extra. The initial labs done while working up PSC include some specialized, expensive stuff.One last thought - you mentioned your daughter had lots of viral infections. I don't know if there is any scientific evidence, but Joe's experience is that whenever he gets a virus, it lasts much longer than it does for anyone else (which is a real pain).

Hope you all can have a good Sunday.

[Guest guest]

>>It must be hard for your daughter with the choices they have in the cafeateria. << Compared to most college cafeterias, they have good food - at least they offer vegetarian and vegan options each meal in every cafeteria (my daughter is vegetarian leaning toward vegan). Unfortunately, most of the kids committed to really healthy eating within the vegetarian and vegan range are in co-ops, so the the school gets lazy about being creative in that area - and a lot of the vegan food (particularly) sits around not being eaten so it gets overcooked or dried out.She's been hanging out with buddies in co-ops on weekends and helping with cooking in exchange for being allowed to eat there more frequently than they are supposed to have the same guest.>>I don't know if her school has it, but MSU has learning centers for

math, english, physics and engineering where the kids can go to get

help. h struggles with Math and has been to the learning center

for math she also said that the English Center will proof papers. <<There's help, but my daughter has been too fatigued (and proud) to access most of it. She aced her calculus last semester (she's better at math than I ever was, and it was one of my majors) - maybe she and h can get together and trade expertise since the brain fog is impacting her ability to put coherent thoughts on paper, but her ability to do math seems intact.

[Guest guest]

>>It must be hard for your daughter with the choices they have in the cafeateria. << Compared to most college cafeterias, they have good food - at least they offer vegetarian and vegan options each meal in every cafeteria (my daughter is vegetarian leaning toward vegan). Unfortunately, most of the kids committed to really healthy eating within the vegetarian and vegan range are in co-ops, so the the school gets lazy about being creative in that area - and a lot of the vegan food (particularly) sits around not being eaten so it gets overcooked or dried out.She's been hanging out with buddies in co-ops on weekends and helping with cooking in exchange for being allowed to eat there more frequently than they are supposed to have the same guest.>>I don't know if her school has it, but MSU has learning centers for

math, english, physics and engineering where the kids can go to get

help. h struggles with Math and has been to the learning center

for math she also said that the English Center will proof papers. <<There's help, but my daughter has been too fatigued (and proud) to access most of it. She aced her calculus last semester (she's better at math than I ever was, and it was one of my majors) - maybe she and h can get together and trade expertise since the brain fog is impacting her ability to put coherent thoughts on paper, but her ability to do math seems intact.

[Guest guest]

h does the same thing as your daughter. She has friends that live off campus (They can move off as sophomores) and heads over to their houses and does the cooking so she can as she puts it "have something edible" h would starve on a vegetarian diet she loves meat. I would bet the college would be ok with her visiting her friends for dinner if they knew about her PSC. Is she a vegetarian due to the PSC? One way I can tell when my common bile duct is ready to be stinted is that I can't eat any meat, even chicken and fish don't sound good. I'm curious about the co-op and how they work.

h would definitely trade the English for the math. She has to take Calc next fall and is dreading it. She had a head injury in the 3rd grade and has been a mess in math ever since. The Dr told us it might be a problem. We just tease her and call her our dingy blond

The fatigue can really be bad because when you are feeling good sometimes the centers aren't open. After about 3 in the afternoon I am worthless. I try to have all my "thinking" work done by then. I work for my husband and he is very understandable about being tired. I told him I wanted a couch in the office or one of those bench seats like they have in the GI offices at Mayo so I could take an afternoon nap.

To: Sent: Sunday, March 22, 2009 4:51:31 PMSubject: Re: Introduction - new parent

>>It must be hard for your daughter with the choices they have in the cafeateria. << Compared to most college cafeterias, they have good food - at least they offer vegetarian and vegan options each meal in every cafeteria (my daughter is vegetarian leaning toward vegan). Unfortunately, most of the kids committed to really healthy eating within the vegetarian and vegan range are in co-ops, so the the school gets lazy about being creative in that area - and a lot of the vegan food (particularly) sits around not being eaten so it gets overcooked or dried out.She's been hanging out with buddies in co-ops on weekends and helping with cooking in exchange for being allowed to eat there more frequently than they are supposed to have the same guest.>>I don't know if her school has it, but MSU has learning centers for math, english, physics and engineering where the kids can go to get help.

h struggles with Math and has been to the learning center for math she also said that the English Center will proof papers. <<There's help, but my daughter has been too fatigued (and proud) to access most of it. She aced her calculus last semester (she's better at math than I ever was, and it was one of my majors) - maybe she and h can get together and trade expertise since the brain fog is impacting her ability to put coherent thoughts on paper, but her ability to do math seems intact.

[Guest guest]

>>I would bet the college would be ok with her visiting her friends for

dinner if they knew about her PSC. Is she a vegetarian due to the PSC?<<She hasn't eaten poultry since she was 5 and we discovered she was allergic to it (and it triggered UC flares). She became a vegetarian in 10th grade - mostly I think because all the cool Quaker kids are vegetarian and she had just spent a week hanging out with them, but also partly for ecological and/or anti-cruelty to animal reasons. She expected to start eating some meat when she went to college. Since I knew that probably half the kids at the school she attends are vegetarian or vegan I figured she would be heading the opposite direction (which she is).When we first started suspecting liver problems, she did research on liver-friendly diets and decided being vegetarian was probably healthier for her liver anyway.As far as where she eats - the co-ops are owned by the students and they have their own internal rules about how

many guests members can bring and how often, to prevent members of the co-ops from subsidizing folks who lost out in the lottery to get into the co-ops. She's in for next year (and on a waiting list for the rest of this year) - but she needs to be careful not to abuse her welcome by crashing the party too often in the mean time.Personally, I think if she spoke with the dietician in the campus dining system they would be willing to make brown rice and beans for her daily, and perhaps some whole grain breads, but that would be asking for "special favors" so she's not inclined to ask.

[Guest guest]

>>I would bet the college would be ok with her visiting her friends for

dinner if they knew about her PSC. Is she a vegetarian due to the PSC?<<She hasn't eaten poultry since she was 5 and we discovered she was allergic to it (and it triggered UC flares). She became a vegetarian in 10th grade - mostly I think because all the cool Quaker kids are vegetarian and she had just spent a week hanging out with them, but also partly for ecological and/or anti-cruelty to animal reasons. She expected to start eating some meat when she went to college. Since I knew that probably half the kids at the school she attends are vegetarian or vegan I figured she would be heading the opposite direction (which she is).When we first started suspecting liver problems, she did research on liver-friendly diets and decided being vegetarian was probably healthier for her liver anyway.As far as where she eats - the co-ops are owned by the students and they have their own internal rules about how

many guests members can bring and how often, to prevent members of the co-ops from subsidizing folks who lost out in the lottery to get into the co-ops. She's in for next year (and on a waiting list for the rest of this year) - but she needs to be careful not to abuse her welcome by crashing the party too often in the mean time.Personally, I think if she spoke with the dietician in the campus dining system they would be willing to make brown rice and beans for her daily, and perhaps some whole grain breads, but that would be asking for "special favors" so she's not inclined to ask.

[Guest guest]

>>I would bet the college would be ok with her visiting her friends for

dinner if they knew about her PSC. Is she a vegetarian due to the PSC?<<She hasn't eaten poultry since she was 5 and we discovered she was allergic to it (and it triggered UC flares). She became a vegetarian in 10th grade - mostly I think because all the cool Quaker kids are vegetarian and she had just spent a week hanging out with them, but also partly for ecological and/or anti-cruelty to animal reasons. She expected to start eating some meat when she went to college. Since I knew that probably half the kids at the school she attends are vegetarian or vegan I figured she would be heading the opposite direction (which she is).When we first started suspecting liver problems, she did research on liver-friendly diets and decided being vegetarian was probably healthier for her liver anyway.As far as where she eats - the co-ops are owned by the students and they have their own internal rules about how

many guests members can bring and how often, to prevent members of the co-ops from subsidizing folks who lost out in the lottery to get into the co-ops. She's in for next year (and on a waiting list for the rest of this year) - but she needs to be careful not to abuse her welcome by crashing the party too often in the mean time.Personally, I think if she spoke with the dietician in the campus dining system they would be willing to make brown rice and beans for her daily, and perhaps some whole grain breads, but that would be asking for "special favors" so she's not inclined to ask.

[Guest guest]

I would agree with your daughter about the vegetarian diet being more liver friendly from what I have read. I also feel much better if I don't eat much meat. I gave up read meat for about a year as it made me really sick. I eat it maybe once a week and then it has to be a really lean cut. We live in the middle of beef country and my husband was raised on a ranch and ate beef at least 2 meals a day. High cholesterol has made it easier to sell him on cutting back on red meat.

Can your daughter have a microwave and fridge in her room? That has really helped h. It stinks having to pay for the meal plan and then not have her use it. She said even the salad bar is icky and she is not that picky. She goes to Walmart and gets stuff she can cook in her microwave. They just can't have anything that plugs in that they cook on like a hot plate. (Although my son set a dinner roll on fire in the microwave when he put in it for 30 minutes).

Hopefully your daughter can get into a co-op that sounds like it would make everything much easier for her diet wise.

BTW h is definitely up for a swap in Calc verses English she loves English

We need your daughter to talk to h she would set her straight on talking to the dietitian. h can be way toooooo outgoing for her own good some days. That along with the "I know all and am bulletproof" makes for an interesting combination.

To: Sent: Sunday, March 22, 2009 6:53:07 PMSubject: Re: Introduction - new parent