Michele

[Guest guest]

Thanks. I will check that out. For some reason, maternal instincts maybe, but I get a feeling that the MTX is causing the problem. After talking with our pharmacist yesterday, he, too, thinks that it is probably coming from the MTX. Her symptoms and the "warning" that comes with the MTX are pretty similar if not the same.

I'm not sure if it is coincidence, but as long as I can remember she has had a dry cough. It would show especially on the weekend and it just so happens to be Friday is when she gets her MTX. I've mentioned this to the doctor-both ped. and ped. rheumy but they never seemed concerned. Of course, it's not a cough like the one she now has. The way she describes her cough now is: "it feels like her chest is clogged up" and it's "really clogged at night".

I plan on putting a call into her rheumy today. You and everyone else has been wonderful about answering my questions and giving me a lot of insight on something I have no clue about. And just when I thought things were going smoothly........

[Guest guest]

Hi , just me again. Just checked on webmd.com about the MTX and both of your daughter's symptoms are listed there as possible reactions to the drug. You may want to check that out. Michele

-----Original Message-----From: KAmitchemalways@... [mailto:KAmitchemalways@...] Sent: Wednesday, March 13, 2002 5:55 AM Subject: MicheleThanks for the FYI. Yes, "peak flow" was the test that was given. The ped. wants to try steroids again being they seem to work the last time this happened. He said if that dosen't get the job done then he would give her a nebulizer (sp. ?) for 2 months.So, does inflammation in the lungs mean asthma? I still can't help but to wonder about the MTX. She has been on it for almost 5 years. Recently, she has developed an itch all over her body. I've tried changing soap, laundry detergent,.....even with the claritin she still scratches.Again, thanks for the information.

[Guest guest]

wish i could tell you something that would work

is not on the MTX she takes Voltaren and Flexaril and Zantac and

Toradol

her asthma meds include the Proventil inhaler and Flovent and the Albuterol

sulfate for the neb she was on the Zyrtec but was changed to claritin

because the zyrtec wasnt helping anymore she also has been itchy for a few

months

did the change of washing powders and soap and shampoo and conditioner

still no help on that the doctor looked and gave her benadryl this still

hasnt helped

another thing about the itchy is she will scratch so much she leaves a scab

after the sore heals theres a scar like the skin is purple like

i just dont get this JRA fully lololol

would try the OLD remedy of bathing in oatmeal for the itching BUT you know

how a teenager is about old remedys lololol

Robbin

[Guest guest]

you are right about the shakes with Albuterol in any form it will make you

shake

this is normal and shows the medicine is working

the heart has to speed up so the lungs clear theirself out if they cant do

this then theres a risk of a full blown asthma attack or infection due to

the mucus

i remember when my son was young he was born with asthma

and i was back and forth in the ER he was admitted 1 time for the asthma

and he had 1 lung collaspe due to it he is now better at the age of 24

sometimes the asthma is outgrown or lays door mat until later in life

like a remission or is under control

to let yall know how medical has come with treating asthma

my great grand dad died of a asthma attack back then they didnt know what

they know now call a ambulance now and they give the person a shot called

EPI

which will help ALOT and the oxygen

my hubby was out of school alot because of his asthma and so was my son

just 20 years ago now in 2002 the kids have more of a chance of living with

asthma as long as its controlled

diabetes is another break through my mother in laws dad died of that

afterwards the doctor said there was something so simple that could have

prevented it and it was a lump of sugar or piece of candy or a glass of

juice

the rheumatic disease killed people years ago

as we know JRA is something new to alot of doctors and as long as we as

parents info the doctors of what we know and how we as a group have seen too

many similaritys between kids with JRA maybe they will conference better

and with this info finally find a cure or a better way of treating this

disease

like diseases in the past

its just a shame that the kids have to suffer with it

education is the best with anything knowing things

one day this will happen and it will be a thing of the past

where the doctor will screen kids who have ANY immune system problem

and when 1 little symtoms appears they will know right then and treat it

ok i am rambling

talk later

Robbin

[Guest guest]

Hi Robbin,

I just spoke with the rheumy's nurse practioner and she feels that it is indeed more asthma than the MTX. She also said that for some reason or another many kids have developed asthma recently and no one really knows why at this point.

She feels that our ped. is on the right track with the way he is treating this problem. If only I could feel comfortable (just the mom in me I suppose). The nurse will be discussing the problem with the doctor and said she would get back with me. Until then....

[Guest guest]

Thanks for the web site will check it out now, just got the report from the Dr. in the mail today, and Tyler's HLA-B27 was Positive which according to the dr. confirms her dx. of Spondy. Thanks for you help, still on the Voltaren and it seems to be helping. Thanks again.

Back from New Dr. Visit.

Hi gang,

Well we're back from the new Rhuemy visit in Houston and I can honestly say I am know more confused than ever. She is more concerned about Tyler's hip than his hands(his hands are starting to curve on his index fingers and pinky fingers). We were more concerned about his hands and she said she didn't see any signs of long term flares. ??? She also said she was wanting to change his diagnosis to Spondyloarthropathy instead of JRA(which he was diagnosed with at 15mo.)HUH?????

So now I am so confused!! She did blood work and x-rays and changed his meds from Naporsyn to Valtoren. My husband and I left with such a strange feeling, was she saying Tyler was miss diagnosed at 15 mo.? She said at that age she would have also diagnosed him with JRA but now they know more about subcategories and she felt if we could pinpoint the exact type of arthritis Tyler had that we could treat it better and be able to know a better long term prognosis.

I am going to research the info she gave us, but I wanted the groups advise also. Is anyone else on Valtoren or ever been on it?

Thanks for listening we go back in 6 weeks.

Confused -

and Tyler ( 9, ????)To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Glad to be of some help. With him being positive that does give you the diagnosis. Good luck, Michele

-----Original Message-----From: Guerrero [mailto:mg9393@...] Sent: Tuesday, June 10, 2003 10:04 PM Subject: Re: Michele

Thanks for the web site will check it out now, just got the report from the Dr. in the mail today, and Tyler's HLA-B27 was Positive which according to the dr. confirms her dx. of Spondy. Thanks for you help, still on the Voltaren and it seems to be helping. Thanks again.

Back from New Dr. Visit.

Hi gang,

Well we're back from the new Rhuemy visit in Houston and I can honestly say I am know more confused than ever. She is more concerned about Tyler's hip than his hands(his hands are starting to curve on his index fingers and pinky fingers). We were more concerned about his hands and she said she didn't see any signs of long term flares. ??? She also said she was wanting to change his diagnosis to Spondyloarthropathy instead of JRA(which he was diagnosed with at 15mo.)HUH?????

So now I am so confused!! She did blood work and x-rays and changed his meds from Naporsyn to Valtoren. My husband and I left with such a strange feeling, was she saying Tyler was miss diagnosed at 15 mo.? She said at that age she would have also diagnosed him with JRA but now they know more about subcategories and she felt if we could pinpoint the exact type of arthritis Tyler had that we could treat it better and be able to know a better long term prognosis.

I am going to research the info she gave us, but I wanted the groups advise also. Is anyone else on Valtoren or ever been on it?

Thanks for listening we go back in 6 weeks.

Confused -

and Tyler ( 9, ????)To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi, Patty. Yes, chipping his knee cap was painful, and I " Mother of the

Year " just kept icing it and telling him he'll be fine. For about 2

weeks, then I took him to the orthpaedic who showed me the xray. Yikes!

Falling out of the tree must have been a tough one. I know seemed

to bruise more easily when he was taking his high doses of Celebrex.

Maybe some of her bruises were made worse if she was taking a NSAID?

Just a thought. To answer your questions, does flare when he gets

sick, but he has been very healthy this past year. No real colds or

anything. Thank goodness. When he does get injured, it takes longer for

things to heal. For example, two summers ago he stepped off the porch

and twisted his ankle. This was mid July. By September he was still

hurting a lot and they had to take an MRI to check for any damage not

showing up on xray. There was none, just inflammation. So, an injury

that would have normally healed in a few weeks took over 2 months to

heal. At that time his jra was not well controlled, so if he was flaring

because of the injury, I did not notice. He would have swelling in

different spots anyway. His toes, his heels, his achilles tendon, his

back at various times would have inflammation. He has only had strep

once that I can remember since diagnosis and a couple of ear infections

- one so bad his ear drum was about to rupture and he only said it was

sore. The dr couldn't believe it. His ears have always been a problem

for since birth. Lots of ear infections. I hope the girls strep

tests stay negative. Have a good one, Michele (16,pauci & spondy)

Michele

Hi Michele:

Thank you for your well wishes for and Caitlin. Later in the

afternoon the middle school called with Caitlin in the clinic

complaining of a sore

throat! So off to the doctors with Caitlin and because Alyssa had a

tickle in

her throat and shares a room with (her choice:) she went too.

So

all have now been swabbed. Alyssa and Caitlin's quick strep came back

negative,

but Jen's did too yesterday. Will wait until tomorrow to see if

anything

grows overnight, hoping and praying nothing does. You know the worst

part is

wondering if she has it and if she doesn't will she get it from Jen

having it:(

Of course, wondering if another strep infection would send her into a

flare or

it it's not JRA would an infection cause reactive arthritis again.

Chipping a piece out of a kneecap sounds very painful:( I did that to

my

ankle as a child and I still remember it hurt like heck. If Caitlin has

JRA, I

wouldn't know if it was triggered from strep or injury because the

Sunday

(fever started Monday, with sore throat) she and her friend were

climbing trees at

her friend's house and Caitlin fell out of it and landed on her back on

a huge

tree root hard. She had nasty bruises and scratch marks all over her

back.

Even in the hospital they kept asking if the marks were part of her

illness or

if they were from the tree. So who knows, need my crystal ball.

Does flare from other illness or mostly strep? Would an injury

cause a

flare? Do a lot of children flare every time they get sick or injured

(after

onset) or can they get sick and just be sick with that without flaring?

Take care.

Patty

[Guest guest]

Hi, Patty. We are amazed sometimes with watching how fast our dd can

type when she is " talking " to her friends. LOL With 3 IMing it must be

hard!

The upper GI is scheduled for Friday morning. He can't eat anything

after midnight, then when he gets there he will need to drink this

liquid and then they follow it through to his small bowel like an xray.

They are looking for signs of Crohn's, which can show up in the stomach

and into the intestine. The test takes about 1 hour or so. I bribed him

with a day off of school to get him to go. Bad I know, but he is a good

student and I want this test done. I promised him that I would quit

nagging him about his weight if he will go.

does have a pretty good idea of what he wants to do, and we think

that one of the most important things to get teens to understand is that

if they plan well, they can do what they want with their lives. Of

course, he may change his mind, but at least he knows that he needs to

figure out what steps he should take to get what he wants. My oldest

only wanted to be a dr. That was all she ever wanted. She gets to

college, takes a pschology course, and falls in love with that. She is

now a psychology major instead of pre med. So I know that kids can

change and still stay on course. Michele ( 17, pauci & spondy)

Michele

Hi Michele:

Fourteen year old IMing, LOL, how I know that one. Between the three of

the

girls, it's getting harder to get online.

I bet you and your daughter can't wait until November when she will be

finished with that med.

Did you get the appointment for for the upper GI? What exactly do

they

do for that test? I am impressed that, at such a young age, not

only

knows what he wants to do with his future, but is planning it too.

Take care.

Patty

[Guest guest]

Still have mine too Michele. Goodness, $230 and only two poses. I can

hardly wait to see what her senior pictures will cost when the time comes LOL.

Probably have to take a loan out:)

Take care.

Patty

[Guest guest]

We haven't gotten an order form yet, and I can't remember what it cost

when my oldest went there. At Chris' school, we get one for free. Now of

course, I pay tuition so I am sure the cost is added in somehow.LOL.

When you make a sport you pay something like $50, but you can get that

back working the concession stand for some sports. It does get expensive

for all the little extras! Chris' senior pictures were around $230 - and

that was just 2 poses nothing fancy. Jen did not order her freshman pics

as I have lots from last year's 8th grade graduation. She still looks

the same to me! LOL Anyway, I think the cheapest on the freshman pics

was $25. I know we will order a yearbook when they come out. I like

having the memories of their schools. I still have mine. Michele

Michele

Hi Michele:

I am hoping I am on to something with the adrenaline.

Speaking of the joys of high school. Just for curiosity sake (okay,

okay, I

am being nosey:) did your daughter get her form for her yearbook yet?

Alyssa

got hers the first day of school, they cost $55 dollars!!!!!!! Maybe I

am

living in another world, but their yearbooks so far have been around

15-20! She

also had her pictures taken the third day of school which was fast in my

book.

Good thing she and I agreed on something for her to wear LOL. I need

to get

a job just to keep her in PUBLIC high school!

Take care.

Patty

[Guest guest]

Thanks. I certainly hope he won't flare. My dh says I should know

better, they won't flare because of two weeks without mtx... hope

he's right.

Soili

[Guest guest]

>>When you say " consistently insulting and condescending " you imply >>a series

of communications.........like a major attack or >>something. I think I would

remember something like that...........

I have had 3 private conversations with you. I would also think you would

remember them. I wouldn't characterize it as " a major attack " . I would

characterize it the way I have characterized it: condescending and insulting.

However, since you don't remember anything we have discussed -- neither

publically nor privately it seems -- there is no point in pursuing any kind of

" conflict resolution " .

For clarification, I am not deeply hurt nor angry. Since my comments were made

publically and since I assume other people actually do remember things I have

said previously on the list, some of my comments were aimed largely at

clarifying things for other people.

And, no, I am not the moderator of the group. The group has 3 moderators/list

owners. I am not one of them.

Michele in California

calif.michele@...

webmaster@...

Visit Michele's World! of (Twice) Exceptional Homeschooling

http://www.califmichele.com

It is not so very important for a person to learn facts. For that he does not

really need a college. He can learn them from books. The value of an education

in a liberal arts college is not learning of many facts but the training of the

mind to think something that cannot be learned from textbooks.

-Albert Einstein

[Guest guest]

She does take hot shower/baths. In fact that's one thing that the nurse asked

me. I said yes several times a day, but that's not feasible once school starts.

She is also getting PT/OT and in fact I got the written evaluations yesterday

from both of them. Both refer to swelling (something her current rheumy says

she never sees) and talks about hypermobility in her joints, also something her

current rheumy says she does not have. I will most definately be giving copies

of these reports to the new doc.

I have not heard of a heated mattress pad. Is this something you can get at

a place like Wal Mart? We are bringing Hannah's old bed out of storage and I

have to buy her a new one anyway because its a full sized bed.

" Tepper, Michele " <MTepper@...> wrote:

Yes, Beth it does! I was typing a reply to your other message, but got

busy at work and lost it. I was basically saying the same thing in my

email. You are doing the right thing in trying a different dr. " Too

complicated " !? With that attitude I wouldn't want to waste my time or

my child's health.

In the mean time, I had some thoughts about her morning pain. Could she

take a warm shower in the morning, first thing? That helps when he

is stiff. Also, there are some folks that use a heated mattress cover

that seems to help. I know, in the summer that seems too hot, but maybe

it would work for her. I know that there are kids here on the list that

use them. When you do get to the dr, perhaps ask about physical therapy

if she is not already having any. That also helped a lot. Hope she

is feeling better soon, Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of Beth Yohnk

Sent: Friday, August 25, 2006 9:44 AM

Subject: it pays to be a pushy mom

Ok, the rheumy's nurse called me yesterday and said the on-call dr.

would not touch Hannah because she is " too complicated'. That pretty

much pushed me to my limits. I called this new Dr's office today and

said there is no way Hannah can wait another month for this second

opinion. She will never make it through 3 weeks of school in this much

pain.

Her new appt is Sept. 7...2 days after school starts.

It pays to be pushy.

Beth Yohnk

Happy Thoughts..Be Well

[Guest guest]

Yes, I do believe that some folks have gotten theirs at Walmart. Plus,

with fall coming, they may have them in stock. Perhaps someone who has

purchased one can post where they found it. I saw one at Target but

was not interested. He feels the showers first thing in the

morning are good enough for him.

Amazing that the PT can feel the swelling but not the dr. Good thing you

have the written reports to show the new dr. I sure hope this new dr is

able to get a handle on this pain. No child should be suffering like

that. Michele

________________________________

From: [mailto: ] On

Behalf Of Beth Yohnk

Sent: Friday, August 25, 2006 10:09 AM

Subject: RE: Michele

She does take hot shower/baths. In fact that's one thing that the nurse

asked me. I said yes several times a day, but that's not feasible once

school starts.

She is also getting PT/OT and in fact I got the written evaluations

yesterday from both of them. Both refer to swelling (something her

current rheumy says she never sees) and talks about hypermobility in her

joints, also something her current rheumy says she does not have. I will

most definately be giving copies of these reports to the new doc.

I have not heard of a heated mattress pad. Is this something you can get

at a place like Wal Mart? We are bringing Hannah's old bed out of

storage and I have to buy her a new one anyway because its a full sized

bed.

" Tepper, Michele " <MTepper@...

<mailto:MTepper%40ftportfolios.com> > wrote:

Yes, Beth it does! I was typing a reply to your other message, but got

busy at work and lost it. I was basically saying the same thing in my

email. You are doing the right thing in trying a different dr. " Too

complicated " !? With that attitude I wouldn't want to waste my time or

my child's health.

In the mean time, I had some thoughts about her morning pain. Could she

take a warm shower in the morning, first thing? That helps when he

is stiff. Also, there are some folks that use a heated mattress cover

that seems to help. I know, in the summer that seems too hot, but maybe

it would work for her. I know that there are kids here on the list that

use them. When you do get to the dr, perhaps ask about physical therapy

if she is not already having any. That also helped a lot. Hope she

is feeling better soon, Michele ( 19, spondy)

________________________________

From: <mailto: %40>

[mailto: <mailto: %40> ]

On

Behalf Of Beth Yohnk

Sent: Friday, August 25, 2006 9:44 AM

<mailto: %40>

Subject: it pays to be a pushy mom

Ok, the rheumy's nurse called me yesterday and said the on-call dr.

would not touch Hannah because she is " too complicated'. That pretty

much pushed me to my limits. I called this new Dr's office today and

said there is no way Hannah can wait another month for this second

opinion. She will never make it through 3 weeks of school in this much

pain.

Her new appt is Sept. 7...2 days after school starts.

It pays to be pushy.

Beth Yohnk

Happy Thoughts..Be Well

[Guest guest]

Thanks Michele. I did find them online, but they are rather expensive...we'll

have to see. I've been telling myself all day..only 2 weeks until we see the

new doc, but she is really struggling this evening. It's been storming all day

and its really humid. I guess Dr. Supermom will have to get her through the

next couple of weeks. I'm glad school hasn't started school yet!

" Tepper, Michele " <MTepper@...> wrote:

Yes, I do believe that some folks have gotten theirs at Walmart. Plus,

with fall coming, they may have them in stock. Perhaps someone who has

purchased one can post where they found it. I saw one at Target but

was not interested. He feels the showers first thing in the

morning are good enough for him.

Amazing that the PT can feel the swelling but not the dr. Good thing you

have the written reports to show the new dr. I sure hope this new dr is

able to get a handle on this pain. No child should be suffering like

that. Michele

________________________________

From: [mailto: ] On

Behalf Of Beth Yohnk

Sent: Friday, August 25, 2006 10:09 AM

Subject: RE: Michele

She does take hot shower/baths. In fact that's one thing that the nurse

asked me. I said yes several times a day, but that's not feasible once

school starts.

She is also getting PT/OT and in fact I got the written evaluations

yesterday from both of them. Both refer to swelling (something her

current rheumy says she never sees) and talks about hypermobility in her

joints, also something her current rheumy says she does not have. I will

most definately be giving copies of these reports to the new doc.

I have not heard of a heated mattress pad. Is this something you can get

at a place like Wal Mart? We are bringing Hannah's old bed out of

storage and I have to buy her a new one anyway because its a full sized

bed.

" Tepper, Michele " <MTepper@...

<mailto:MTepper%40ftportfolios.com> > wrote:

Yes, Beth it does! I was typing a reply to your other message, but got

busy at work and lost it. I was basically saying the same thing in my

email. You are doing the right thing in trying a different dr. " Too

complicated " !? With that attitude I wouldn't want to waste my time or

my child's health.

In the mean time, I had some thoughts about her morning pain. Could she

take a warm shower in the morning, first thing? That helps when he

is stiff. Also, there are some folks that use a heated mattress cover

that seems to help. I know, in the summer that seems too hot, but maybe

it would work for her. I know that there are kids here on the list that

use them. When you do get to the dr, perhaps ask about physical therapy

if she is not already having any. That also helped a lot. Hope she

is feeling better soon, Michele ( 19, spondy)

________________________________

From: <mailto: %40>

[mailto: <mailto: %40> ]

On

Behalf Of Beth Yohnk

Sent: Friday, August 25, 2006 9:44 AM

<mailto: %40>

Subject: it pays to be a pushy mom

Ok, the rheumy's nurse called me yesterday and said the on-call dr.

would not touch Hannah because she is " too complicated'. That pretty

much pushed me to my limits. I called this new Dr's office today and

said there is no way Hannah can wait another month for this second

opinion. She will never make it through 3 weeks of school in this much

pain.

Her new appt is Sept. 7...2 days after school starts.

It pays to be pushy.

Beth Yohnk

Happy Thoughts..Be Well

[Guest guest]

's rhuemy says she has hyper mobility too.

Beth Yohnk <yohnkmom@...> wrote:

She does take hot shower/baths. In fact that's one thing that the

nurse asked me. I said yes several times a day, but that's not feasible once

school starts.

She is also getting PT/OT and in fact I got the written evaluations yesterday

from both of them. Both refer to swelling (something her current rheumy says she

never sees) and talks about hypermobility in her joints, also something her

current rheumy says she does not have. I will most definately be giving copies

of these reports to the new doc.

I have not heard of a heated mattress pad. Is this something you can get at a

place like Wal Mart? We are bringing Hannah's old bed out of storage and I have

to buy her a new one anyway because its a full sized bed.

" Tepper, Michele " <MTepper@...> wrote:

Yes, Beth it does! I was typing a reply to your other message, but got

busy at work and lost it. I was basically saying the same thing in my

email. You are doing the right thing in trying a different dr. " Too

complicated " !? With that attitude I wouldn't want to waste my time or

my child's health.

In the mean time, I had some thoughts about her morning pain. Could she

take a warm shower in the morning, first thing? That helps when he

is stiff. Also, there are some folks that use a heated mattress cover

that seems to help. I know, in the summer that seems too hot, but maybe

it would work for her. I know that there are kids here on the list that

use them. When you do get to the dr, perhaps ask about physical therapy

if she is not already having any. That also helped a lot. Hope she

is feeling better soon, Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of Beth Yohnk

Sent: Friday, August 25, 2006 9:44 AM

Subject: it pays to be a pushy mom

Ok, the rheumy's nurse called me yesterday and said the on-call dr.

would not touch Hannah because she is " too complicated'. That pretty

much pushed me to my limits. I called this new Dr's office today and

said there is no way Hannah can wait another month for this second

opinion. She will never make it through 3 weeks of school in this much

pain.

Her new appt is Sept. 7...2 days after school starts.

It pays to be pushy.

Beth Yohnk

Happy Thoughts..Be Well

[Guest guest]

Your welcome, Beth. I remember when was first diagnosed with it,

we were still trying to figure out JRA and then they mention this. The

list was the first place I turned for info, and God bless Georgina, she

found and posted info for me. Uncle Rusty (he hasn't posted in a long

while - sure miss him!) also has this and he posted his thoughts too.

All of that helps and reinforces for me the value of everyone here. Hope

that something is figured out for Hannah. You could even look at

psoriatic arthritis as I mentioned, as the symptoms can be similar. Keep

at it - something will be diagnosed I am sure! Good luck, Michele

( 19,spondy)

________________________________

From: [mailto: ] On

Behalf Of Beth Yohnk

Sent: Wednesday, October 04, 2006 9:56 AM

Subject: Michele

Michele:

Thanks for all the great links on the spondy information. I spent well

over an hour last night looking at them. Definitely something to look at

given Hannah's current pain in her neck and back that has been

persistent now for over 2weeks. She went to PT yesterday and he told me

that she has significant weakness in her lower left back. Will

definitely mention it to the new doc when we see him in 4 weeks. She

also complains of a lot of stiffness in her lower extremities too.

Thanks again for the information.

Beth (Hannah, 10 next week; unspecified arthritis; asthma; gerd)

[Guest guest]

It sounds like you have been pretty conservative in trying various

things before going to surgery. But if that is what needs to be done,

then you must. I hope it gives Rob the relief he deserves. How is the

job coming along?

I have heard so many kids change their majors in college, it's not

really a surprise. You never know, he might go back to engineering when

he sees it doesn't have to be a " pencil pusher " type of thing. My cousin

is an engineer and he travels all over the world for his job. He is a

mechanical one I think. I can't remember. My oldest never wanted to be

anything other than be a dr, and went to college pre med. She took a

course in psychology and fell in love with that. She changed majors and

never looked back. Of course, now she needs to figure out what she wants

to do with this degree, but hey at least she got it. LOL She also has a

minor in Criminology and really enjoyed the juvenile court classes they

took. Maybe Rob will be interested in that route? Going to school will

open up a whole world of possibilities once he is there.

is still working for the car dealership. They have just given him

a raise, and have asked him about doing a different job there, one with

more responsibility. I of course want him back in school, but full time

school just doesn't seem to be for him at this point. So, I keep

plugging for at least a course or two. He is still doing detailing on

the side, and loving it. He just did my husbands 1991 bilt and it

shines like you wouldn't believe. He even has his girlfriend interested

in it. He helps her keep her car shining all the time. Not an easy feat

in the snow and cold we are having here. Physically, is doing ok.

Sometimes his back hurts and you can occasionally see the old swelling

in the ankles and knees. But still not ready to get back to a rheumy on

a regular basis like he should. I worry when I see the old limp come

back in the mornings or when I can tell he is hurting, but at his age he

needs to figure it out for himself. At least with the ground freezing,

his asthma has settled down.

Thanks for asking about and I hope all is well with you, Michele

(19, spondy)

________________________________

From: [mailto: ] On

Behalf Of snooksmama@...

Sent: Wednesday, December 06, 2006 11:49 AM

Subject: Michele

Michele:

You're welcome. Tree is so excited about the house.

Just also, an update on Rob, he will be having arthroscopic knee surgery

on 12/27.

To clean up the scar tissue and try to remove the large cyst. The

surgeon

is one I've worked with for years, and he's very conservative and very

good. Rob has tried physical therapy, steroid injection, and this has

been going on over a year. So, we don't feel like its been entered into

casually.

Rob also dropped a bomb on us the other day...he does not want to study

engineering. The good news is that the college he has been accepted into

has a wonderful Criminal Justice program he is interested in. Rob says

he

doesn't want to be stuck in a cubicle and be a 'pencil pusher', which

really, is good if he has an active job. I just don't want him to be in

danger. He's just in the exploration stages thus far, so we'll see what

happens. He is really excited about this!

How's doing these days??

and Rob 17 spondy

Thanks for the Tree update, . Her house sounds like it will be

wonderful for her. She certainly deserves this. I am glad she is

recovering, although I wish and pray she has more feeling and less

numbness. Michele ( 19, spondy)

[Guest guest]

Thanks Michele

Hopefully, I'll be feeling much better soon.

and Rob 17 Spondy

I sure hope the Humira does the trick for you. I am so sorry you have

been having such difficulties. Michele

[Guest guest]

HI . is doing ok. We are still in the discussion phase.

Things have been a bit goofy at home - I have been having difficulty

since the accident I was in, and have just started physical therapy. I

hope it does the trick. My dh has been having a lot of problems with his

gout/ possible RA, and now his depression/BP has reared its ugly head,

so that makes getting him to take care of himself difficult. On the plus

side, I did talk to when his girlfriend was around (just another

of my gentle reminders about how much better he might be with meds) and

she is on my side. She told him " Yes, take your meds. " So perhaps that

will help! LOL

Good news to report, my oldest has finally found a job! She moved back

home last fall, after the job in Milwaukee did not work out, and has

been off for quite awhile (she had some depression issues as well) but

is feeling good and now working. I am so glad of that!

Thanks for asking after Chris. How is Rob doing? How are work and the

college plans? We are starting now with the youngest one - she was

looking at a school in Denver (Yikes!) and is also looking at Marquette

where went (much closer to Chicago!). Open houses here we come!

Michele

________________________________

From: [mailto: ] On

Behalf Of snooksmama@...

Sent: Monday, January 29, 2007 9:33 PM

Subject: Michele

Michele:

Just wondering how is doing and if he's reached any decisions.

Thinking of you!

and Rob 17 Spondy

[Guest guest]

,

somehow I missed the news about your auto accident and trouble with not

wanting to take his meds...I am so sorry you are going through this added

stress; how are you feeling? As far as - he is not wanting to take meds?

It is so difficult when they reach the age of independence and make choices that

are not healthy for them...I hope that his girlfriend will be able to persuade

him to take better care of himself. It must be tough watching him make poor

choices. Hopefully this is a (short) phase.

Regarding ped rheumys, actually, 's rheumy is at UCLA but she is the one

that first kept blaming residual effects of the meningitis and now the

food...she seems unable/unwilling to choose a treatment path, other than the

Mobic, and 's hips are worse than 2 months ago and significantly worse

than when she fisrt began seeing her last April. I think it is time for a

rheumy who will be more pro-active as I cannot continue to watch her

suffer...worse now than a year ago.

Anyway, thanks for your input, for listening, and I hope you are feeling better

soon.

Take care,

( & 16)

snooksmama@... wrote: Hi Michele

I wanted to comment, I am so sorry to hear about your accident. Are you

just beat up all over or was one particular area hurt? I hope that you

are feeling better.

I hope that decides to take his meds and is back on the road to

feeling better. Hopefully, if he does decide, he will be controlled

quickly.

Rob is doing great. His knee is improving daily. He had a recheck at the

doc yesterday and all looks good.

I got the all clear from my pneumonia (I had a few weeks ago) and so

yesterday I was able to start Humira. I don't know if it is a

coincidence, But I had a better morning this morning.

I was so sorry to hear about your daughter. You have had a lot going on.

Please take care of yourself along with all the others you look out for!

I'll keep you and your family in my prayers.

and Rob 17 Spondy

HI . is doing ok. We are still in the discussion phase.

Things have been a bit goofy at home - I have been having difficulty

since the accident I was in, and have just started physical therapy. I

hope it does the trick. My dh has been having a lot of problems with his

gout/ possible RA, and now his depression/BP has reared its ugly head,

so that makes getting him to take care of himself difficult. On the plus

side, I did talk to when his girlfriend was around (just another

of my gentle reminders about how much better he might be with meds) and

she is on my side. She told him " Yes, take your meds. " So perhaps that

will help! LOL

Good news to report, my oldest has finally found a job! She moved back

home last fall, after the job in Milwaukee did not work out, and has

been off for quite awhile (she had some depression issues as well) but

is feeling good and now working. I am so glad of that!

Thanks for asking after Chris. How is Rob doing? How are work and the

college plans? We are starting now with the youngest one - she was

looking at a school in Denver (Yikes!) and is also looking at Marquette

where went (much closer to Chicago!). Open houses here we come!

Michele

[Guest guest]

I am doing better - I am in physical therapy for my neck and back. I

have a neck sprain and because of everything I was doing, it was not

healing properly. I still have pain and stiffness. I am amazed at what I

cannot do, that I should be able to do, because of the fact that I am

" guarding " as the therapist says, and not using my muscles properly.

Plus, here at work, I need to look down at reports and then up at a

computer screen. It will just take a bit longer to heal than I had

hoped.

About 's hips, is the dr feeling swelling in the joints? The

reason I ask is that began to complain of hip pain and when the

rheumy examined him, she found that there was not swelling in the hips,

but rather in his pelvic rim. This was another step towards the

spondylitis diagnosis for him. How she could tell or feel a difference I

do not know, but she did. I remember her moving his legs around with him

lying down and then feeling on his back. He was then put on a DMARD that

is usually good for spondylitis, sulfasalazine. ended up on

Methotrexate, as the sulfasalazine was not effective. But I believe

getting the diagnosis helped move his treatment forward in a more

aggressive manner, from the Celebrex he was on prior to that. Just

something to think about.

Hope you are able to sort out the dr situation soon, Michele ( 19,

spondy)

________________________________

From: [mailto: ] On

Behalf Of nancy barnes

Sent: Tuesday, February 06, 2007 12:04 PM

Subject: Re: Michele

,

somehow I missed the news about your auto accident and trouble with

not wanting to take his meds...I am so sorry you are going through

this added stress; how are you feeling? As far as - he is not

wanting to take meds? It is so difficult when they reach the age of

independence and make choices that are not healthy for them...I hope

that his girlfriend will be able to persuade him to take better care of

himself. It must be tough watching him make poor choices. Hopefully this

is a (short) phase.

Regarding ped rheumys, actually, 's rheumy is at UCLA but she is

the one that first kept blaming residual effects of the meningitis and

now the food...she seems unable/unwilling to choose a treatment path,

other than the Mobic, and 's hips are worse than 2 months ago and

significantly worse than when she fisrt began seeing her last April. I

think it is time for a rheumy who will be more pro-active as I cannot

continue to watch her suffer...worse now than a year ago.

Anyway, thanks for your input, for listening, and I hope you are feeling

better soon.

Take care,

( & 16)

snooksmama@... <mailto:snooksmama%40juno.com> wrote: Hi Michele

I wanted to comment, I am so sorry to hear about your accident. Are you

just beat up all over or was one particular area hurt? I hope that you

are feeling better.

I hope that decides to take his meds and is back on the road to

feeling better. Hopefully, if he does decide, he will be controlled

quickly.

Rob is doing great. His knee is improving daily. He had a recheck at the

doc yesterday and all looks good.

I got the all clear from my pneumonia (I had a few weeks ago) and so

yesterday I was able to start Humira. I don't know if it is a

coincidence, But I had a better morning this morning.

I was so sorry to hear about your daughter. You have had a lot going on.

Please take care of yourself along with all the others you look out for!

I'll keep you and your family in my prayers.

and Rob 17 Spondy

HI . is doing ok. We are still in the discussion phase.

Things have been a bit goofy at home - I have been having difficulty

since the accident I was in, and have just started physical therapy. I

hope it does the trick. My dh has been having a lot of problems with his

gout/ possible RA, and now his depression/BP has reared its ugly head,

so that makes getting him to take care of himself difficult. On the plus

side, I did talk to when his girlfriend was around (just another

of my gentle reminders about how much better he might be with meds) and

she is on my side. She told him " Yes, take your meds. " So perhaps that

will help! LOL

Good news to report, my oldest has finally found a job! She moved back

home last fall, after the job in Milwaukee did not work out, and has

been off for quite awhile (she had some depression issues as well) but

is feeling good and now working. I am so glad of that!

Thanks for asking after Chris. How is Rob doing? How are work and the

college plans? We are starting now with the youngest one - she was

looking at a school in Denver (Yikes!) and is also looking at Marquette

where went (much closer to Chicago!). Open houses here we come!

Michele

[Guest guest]

Hi, . Glad to hear about the pneumonia clearing up, are you still

having better days? I hope the Humira does the trick for you.

Glad that Rob's knee is doing well. Has he applied yet at school? I know

this is the busy time for all of that, and filing your FAFSA! Don't

forget about that! I was just cleaning out old paperwork and came across

all of the old ones I did for and Chris. Next year, I'll be back

at it for Jenn. Hope school plans are on track.

is still not on any meds (beyond occasional Alleve). At least he

still goes to the eye dr every 6 months. I'll keep up with the gentle

nagging and of course my praying! I tell you St. Jude is hearing a lot

from me these days! LOL

Michele ( 19,spondy)

________________________________

From: [mailto: ] On

Behalf Of snooksmama@...

Sent: Friday, February 02, 2007 6:51 PM

Subject: Michele

Hi Michele

I wanted to comment, I am so sorry to hear about your accident. Are you

just beat up all over or was one particular area hurt? I hope that you

are feeling better.

I hope that decides to take his meds and is back on the road to

feeling better. Hopefully, if he does decide, he will be controlled

quickly.

Rob is doing great. His knee is improving daily. He had a recheck at the

doc yesterday and all looks good.

I got the all clear from my pneumonia (I had a few weeks ago) and so

yesterday I was able to start Humira. I don't know if it is a

coincidence, But I had a better morning this morning.

I was so sorry to hear about your daughter. You have had a lot going on.

Please take care of yourself along with all the others you look out for!

I'll keep you and your family in my prayers.

and Rob 17 Spondy

HI . is doing ok. We are still in the discussion phase.

Things have been a bit goofy at home - I have been having difficulty

since the accident I was in, and have just started physical therapy. I

hope it does the trick. My dh has been having a lot of problems with his

gout/ possible RA, and now his depression/BP has reared its ugly head,

so that makes getting him to take care of himself difficult. On the plus

side, I did talk to when his girlfriend was around (just another

of my gentle reminders about how much better he might be with meds) and

she is on my side. She told him " Yes, take your meds. " So perhaps that

will help! LOL

Good news to report, my oldest has finally found a job! She moved back

home last fall, after the job in Milwaukee did not work out, and has

been off for quite awhile (she had some depression issues as well) but

is feeling good and now working. I am so glad of that!

Thanks for asking after Chris. How is Rob doing? How are work and the

college plans? We are starting now with the youngest one - she was

looking at a school in Denver (Yikes!) and is also looking at Marquette

where went (much closer to Chicago!). Open houses here we come!

Michele

[Guest guest]

Hi ,

I hope you are feeling a little better each week and that the PT is bringing

positive results for your neck and back.

It is interesting that, for the second time, you suggest considering spondy for

...when she went to see the immuno today for her CVID,the rheumy wanted to

see her,,,based on her issues with tendonitis/bursitis, her current ongoing

problems with hips and knees, and previous with feet,,,oh and her low back and

pelvic area, she said it appears 's problems all seem to involve

inflammation of sites of insertion for tendons and ligsments but she tested neg

before for HLA127 (?) so feels likely seronegative spondyloarthropathy; She is

repeating some lab work...but if you could please share again with me about

what has/has not worked...both meds and therapies...and any articles you

can refer me to? Most I found referred to podiatrry.

How is doing?

Any info and inpt would be deeply appreciated!

(, 16, CVID, fibro, spondy?, migraines)

" Tepper, Michele " <MTepper@...> wrote:

I am doing better - I am in physical therapy for my neck and back. I

have a neck sprain and because of everything I was doing, it was not

healing properly. I still have pain and stiffness. I am amazed at what I

cannot do, that I should be able to do, because of the fact that I am

" guarding " as the therapist says, and not using my muscles properly.

Plus, here at work, I need to look down at reports and then up at a

computer screen. It will just take a bit longer to heal than I had

hoped.

About 's hips, is the dr feeling swelling in the joints? The

reason I ask is that began to complain of hip pain and when the

rheumy examined him, she found that there was not swelling in the hips,

but rather in his pelvic rim. This was another step towards the

spondylitis diagnosis for him. How she could tell or feel a difference I

do not know, but she did. I remember her moving his legs around with him

lying down and then feeling on his back. He was then put on a DMARD that

is usually good for spondylitis, sulfasalazine. ended up on

Methotrexate, as the sulfasalazine was not effective. But I believe

getting the diagnosis helped move his treatment forward in a more

aggressive manner, from the Celebrex he was on prior to that. Just

something to think about.

Hope you are able to sort out the dr situation soon, Michele ( 19,

spondy)

________________________________

From: [mailto: ] On

Behalf Of nancy barnes

Sent: Tuesday, February 06, 2007 12:04 PM

Subject: Re: Michele

,

somehow I missed the news about your auto accident and trouble with

not wanting to take his meds...I am so sorry you are going through

this added stress; how are you feeling? As far as - he is not

wanting to take meds? It is so difficult when they reach the age of

independence and make choices that are not healthy for them...I hope

that his girlfriend will be able to persuade him to take better care of

himself. It must be tough watching him make poor choices. Hopefully this

is a (short) phase.

Regarding ped rheumys, actually, 's rheumy is at UCLA but she is

the one that first kept blaming residual effects of the meningitis and

now the food...she seems unable/unwilling to choose a treatment path,

other than the Mobic, and 's hips are worse than 2 months ago and

significantly worse than when she fisrt began seeing her last April. I

think it is time for a rheumy who will be more pro-active as I cannot

continue to watch her suffer...worse now than a year ago.

Anyway, thanks for your input, for listening, and I hope you are feeling

better soon.

Take care,

( & 16)

snooksmama@... <mailto:snooksmama%40juno.com> wrote: Hi Michele

I wanted to comment, I am so sorry to hear about your accident. Are you

just beat up all over or was one particular area hurt? I hope that you

are feeling better.

I hope that decides to take his meds and is back on the road to

feeling better. Hopefully, if he does decide, he will be controlled

quickly.

Rob is doing great. His knee is improving daily. He had a recheck at the

doc yesterday and all looks good.

I got the all clear from my pneumonia (I had a few weeks ago) and so

yesterday I was able to start Humira. I don't know if it is a

coincidence, But I had a better morning this morning.

I was so sorry to hear about your daughter. You have had a lot going on.

Please take care of yourself along with all the others you look out for!

I'll keep you and your family in my prayers.

and Rob 17 Spondy

HI . is doing ok. We are still in the discussion phase.

Things have been a bit goofy at home - I have been having difficulty

since the accident I was in, and have just started physical therapy. I

hope it does the trick. My dh has been having a lot of problems with his

gout/ possible RA, and now his depression/BP has reared its ugly head,

so that makes getting him to take care of himself difficult. On the plus

side, I did talk to when his girlfriend was around (just another

of my gentle reminders about how much better he might be with meds) and

she is on my side. She told him " Yes, take your meds. " So perhaps that

will help! LOL

Good news to report, my oldest has finally found a job! She moved back

home last fall, after the job in Milwaukee did not work out, and has

been off for quite awhile (she had some depression issues as well) but

is feeling good and now working. I am so glad of that!

Thanks for asking after Chris. How is Rob doing? How are work and the

college plans? We are starting now with the youngest one - she was

looking at a school in Denver (Yikes!) and is also looking at Marquette

where went (much closer to Chicago!). Open houses here we come!

Michele