Update

[Guest guest]

AJ,

Some great points worth remembering.

thanks

Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(11)Zachary(9)(6) And DD Yuping Burger, adopted May 9th 2000 DuChang, JiangXi, China DOB 3/29/99 ACR 0-9 mths (11 mths at referral) DTC 7/22/99 DOR 2/25/00 (219 days of waiting) DOT 5/5-5/20/00>From: ajaomom@... >Reply- > >Subject: Re: Update >Date: Sat, 31 Jan 2004 21:40:07 EST > >Holly, every year has a classmate assigned to help her during fire drills and >bus evacuations, that way no matter how she is feeling thre is always someone >there. Being she isnt a bus student, that is not much of an issue, but >something they always address before field trips........ > >Luv and hugs, >Aj Get a FREE online virus check for your PC here, from McAfee.

[Guest guest]

In a message dated 2/1/04 3:22:47 PM Eastern Standard Time,

hburger64@... writes:

<< wondering though, if any ones child gets OT/PT though their school, or

though their medical. Do they do OT/PT in the school setting???

Hugs Helen, mom to (6,systemic)

>>

Hi Helen:

Yes, they can do both OT and PT in the school itself.

Take care.

Patty

[Guest guest]

Gosh, all these different plans, IEP's, 504 and IDEA are sending my head spinning. I think the more i read the more confused I get.

You would think that with 3 kids on IEP's I would know somehting about them, but they are for speech and one also has learning disabilities. Nothing about health conditions.

I guess i will talk to the school tomorrow and see what they suggest. They have been wonderful to work with and im sure they will do whatever is best for .

I am wondering though, if any ones child gets OT/PT though their school, or though their medical. Do they do OT/PT in the school setting???

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(11)Zachary(9)(6) And DD Yuping Burger, adopted May 9th 2000 DuChang, JiangXi, China DOB 3/29/99 ACR 0-9 mths (11 mths at referral) DTC 7/22/99 DOR 2/25/00 (219 days of waiting) DOT 5/5-5/20/00>From: Arthurnator@... >Reply- > >Subject: Re: Update >Date: Sun, 1 Feb 2004 13:37:52 EST > >In a message dated 1/31/04 2:52:44 PM Central Standard Time, >Emeraldsx3@... writes: > > > > Nick already has a IEP for speech, can his requirements for the JRA be > > added to that??? or do we need a separate plan???? >> > > > >Hi Helen, >I want to add something else.If Nick is receiving speech then when you add >the JRA he qualafies for IDEA which is better then a 504 plan.The speech is his >special ed criteria and the JRA falls under health impairment and something >else.Shoot,I can't think of it.You will most likely need to be present for the >IEP. > started out with an IEP at 3 at our local school for speech.Once all >the paperwork was completed we had our BIG meeting.Assistant >principal,speech,PT,OT,special ed preschool teacher,regular preschool teacher,school psychiatrist >and me.My first power meeting,lol. >Good luck >Becki and 5 systemic What are the 5 hot job markets for 2004? Click here to find out.

[Guest guest]

In a message dated 2/1/04 2:25:14 PM Central Standard Time, hburger64@... writes:

am wondering though, if any ones child gets OT/PT though their school, or though their medical. Do they do OT/PT in the school setting???

Hi Helan,

Our school is great,we made the no child left behind list,but due to TN or our city there is only enough money for OT and PT if a child is under IDEA.They also make it perferctly clear that the PT and OT is strictly educational not medical,Seems real stupid to me because if the educational needs come to play it's because of the medical(JRA)issues.Our PT used to work for the Memphis Arthritis Clinic and was repremended for breaking the rules.The OT had no clue until last year when she was put on pred due to arthritis of the spine and developed a differant way of thinking.

You have a general knowledge of how an IEP works so I am sure things will go well.

I made my first phone call just to find out what an IEP was to get ready for Kindergarten 2yrs away.Next thing I know is receiving speech and is in special ed preschool for half days.He couldn't handle anything more.That alone wore him out and would fight to get his shoes off as soon as he got in the car.

I can tell you this,school OTand PT can not make up for the medical side.

Hugs

Becki and 5 systemic

[Guest guest]

Hi, Carol. I have not heard of an equilibrium problem, but I do know that when they get hurt it does take longer to heal. twisted his ankle back in July 02 and it took him until into Oct 02 to feel better. When he had hurt his ankle before JRA hit, it healed within weeks. Perhaps with her injuries, waiting to taper any further might be a good idea. Just to keep her comfortable somewhat. If she is hurting, I would think the meds might help her. Hope is doing better soon. Michele (16,pauci & spondy)

update

great sunny morning! is still being tapered off the MTX. She is down to 10.5 mg a week from 22mg. Rheumy wants to "clean" out system and do fresh tests. Well, Jenn has been really hurting in the hips and wrists. She is still on 1000mg of time release Naprosyn daily. So far all bone scans, MRI and CT's are within normal limits. Her labs are perfect. Her sed rate is 3! Well, two weeks ago she was going up a carpeted step and stubbed her toe. While she was at the rheumy she says that her toe is taking rather long to heal. Well, it is fractured. Then, two days ago she is going up the wood stairs and she FALLS! Now this kid is really hurting in the hips, knees and wrists. She did a fine job in twisting the ankle on the broken toe foot. Here is my question, has anyone heard of AS kids developing a "motor skill" or equilibrium problem? What about tapering from MTX? She was on that since August 2003.

Carol and (16 yo AS and ?)

--- car54ol@...

[Guest guest]

Hi Helen:

Sorry to hear Nick is still in pain. I don't have any experience with back

pain, hopefully someone on the list can offer advice on that. How did Nick do

today? How's his back?

Three pills at once. Good for him. I guess since these little ones have to

take the meds it sure is better if you can just swallow them and get it over

with. I hope the MTX goes better than last week.

Take care.

Patty

[Guest guest]

patty,

thanks for asking after , His back didnt hurt so much yesterday. The MTX didnt go as badly as the 1st week, but he did get a small tummy ache and dirareha (sp??) although it didnt last long. Hopefully next week will be better. Im not sure im ready to move to shots just yet. he did take 6 pills in one swallow!! though, show off!!

Today, hes dragging badly, I had a hard time waking him and he refused to walk to the bus stop saying his knees hurt and his legs were tired. I ended up carrying him out to the bus and helping him on to it. I told him to try school and see how it goes, perhaps he will feel better once he gets moving. its only a short day anyhows as i have to pick him up at 11.45 for his OT and PT evals at the hospital.

His prednisone evening dose was cut in 1.2 saturday and yesterday afternoon after being in the hottub, the rash was back on his back ( although it only lasted about 6 hours.

When does Caitlin start going ful days at school??

hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(11)Zachary(9)(6) And DD Yuping Burger, adopted May 9th 2000 DuChang, JiangXi, China DOB 3/29/99 ACR 0-9 mths (11 mths at referral) DTC 7/22/99 DOR 2/25/00 (219 days of waiting) DOT 5/5-5/20/00>From: Emeraldsx3@... >Reply- > >Subject: Re: Update >Date: Sat, 7 Feb 2004 19:53:24 EST > >Hi Helen: > >Sorry to hear Nick is still in pain. I don't have any experience with back >pain, hopefully someone on the list can offer advice on that. How did Nick do >today? How's his back? > >Three pills at once. Good for him. I guess since these little ones have to >take the meds it sure is better if you can just swallow them and get it over >with. I hope the MTX goes better than last week. > >Take care. >Patty Let the advanced features services of MSN Internet Software maximize your online time.

[Guest guest]

In a message dated 2/9/04 11:05:28 AM Eastern Standard Time,

hburger64@... writes:

<<

thanks for asking after , His back didnt hurt so much yesterday. The

MTX didnt go as badly as the 1st week, but he did get a small tummy ache and

dirareha (sp??) although it didnt last long. Hopefully next week will be

better. Im not sure im ready to move to shots just yet. he did take 6 pills in

one

swallow!! though, show off!! >>

You're welcome:) Sorry to hear about his back. It's so hard to move

anything on your body without making your back move and when it hurts,

everything

makes it hurt:( Glad to hear the second round of MTX went better. Show off LOL

- he sounds like he has learned to swallow pills with ease. I don't think I

could swallow 6 at a time!

<<oday, hes dragging badly, I had a hard time waking him and he refused to

walk to the bus stop saying his knees hurt and his legs were tired. I ended up

carrying him out to the bus and helping him on to it. I told him to try school

and see how it goes, perhaps he will feel better once he gets moving. its only

a short day anyhows as i have to pick him up at 11.45 for his OT and PT evals

at the hospital.

>>

Poor little guy:( How did he make out with the day at school? Better once

he got moving? Does he sleep well? I have found that as my girls get older

they go to bed later and just can't seem to get it through their heads that they

will regret it in the morning (and mommy too, with their attitudes). I will

even make them get into bed at 9:00 and they will stay up giggling, reading or

fighting. I worry about this causing a flare for bug, but, she pretty

much understands when her body tells her to rest, it's time. How did the evals

go at the hospital for OT and PT?

<<His prednisone evening dose was cut in 1.2 saturday and yesterday afternoon

after being in the hottub, the rash was back on his back ( although it only

lasted about 6 hours.

>>

Hhhmmm maybe he's not ready for that cut back yet? Did you call the rheumy?

How was the rash today? Caitlin's rash will come out very quickly if she

gets warm. Her rash is very 'touchy' to the prednisone too. The one day with

the mix up of dose made her rash come out with a vengeance! Gone the next day

though, thankfully. We haven't seen it since.

Caitlin will start full days at school (hopefully) next week. So far, so

good. Although she only went 3 half days last week and this week it will be

only

4 due to a teacher work day. She really likes this schedule LOL, who could

blame her. We will have to figure out what to do next week with her classes

she isn't taking (PE and guitar). Keyboarding is new to her this quarter and

that's enough hand involvement. We don't want her strumming the guitar with it

too.

My coworker was sick as a dog today! She thinks she has the flu. I pray she

doesn't have strep. I really felt like walking out to be quite honest! She

was coughing all over the place. I kept my distance! Pulled out the Lysol

and sprayed everything down and the end of the day too. If you are that sick,

STAY HOME! I know I am neurotic, but I just don't know how or what can/will

send Caitlin into a flare and it's just to darn close to initial onset!

Hope Nick is feeling much better today:)

Take care.

Patty

[Guest guest]

Helen, We have found that when you taper the prednisone, the second or third day are the worse. Try to get thru it if you can, but if symptoms persist you might want to move back up. n's back hurts her sometimes. She likes to lay in the lazyboy for the pain. Good luck,.

Re: Update >Date: Sat, 7 Feb 2004 19:53:24 EST > >Hi Helen: > >Sorry to hear Nick is still in pain. I don't have any experience with back >pain, hopefully someone on the list can offer advice on that. How did Nick do >today? How's his back? > >Three pills at once. Good for him. I guess since these little ones have to >take the meds it sure is better if you can just swallow them and get it over >with. I hope the MTX goes better than last week. > >Take care. >Patty

Let the advanced features & services of MSN Internet Software maximize your online time.

[Guest guest]

it depends on your blood test values. I am mildly hyperthyroid and

have been for many years. I'm on 5 mg. of Tapazole. That's what I started out

with and right now I take it 6 days a week. What are your test results?

Sandy

[Guest guest]

That is good news . However, why on such a low starting dose? I am

suspicious that your doctor doesn't know how to use ATDs. Typically,

someone is started on 150-300mg PTU per day, and the medication should

always be taken in 3 divided doses (every 8 hours). Otherwise, you will

have uneven levels, and that will not help you as much to reach remission,

which is your goal. A less savvy doctor may be afraid of using ATDs, and

start on a low dose, and then raise it when you " aren't responding. " Some

doctors will tell you " you failed to respond to the ATDs, and now we must

give you RAI. " Don't fall for it. Unless you are very mild hyperT, then you

are on too low a dose. The high dose is used to block the thyroid

completely, which will allow the excess hormone stored in your thyroid to

be used up. Then, as this supply is drained, you decrease your doses

smoothly as possible and in smaller and smaller increments, like landing a

plane.

At 10:41 AM 2/16/2004, you wrote:

>Hi hope everyone had a wonderful weekend. We sure did. We made the

>front page of the newspaper today! We went to the dog parade and our

>dog made the front page. Our dog china was dressed in a pink dress.

>She does this thing where she stands on her hind legs and prances

>around like a ballerina. We had lots of fun!

>

>Anyways on another note, doctor finally gave me some medicine for my

>thyroid. He put me on 50mg of PTU. I should be getting my ct scan

>results sometime today. I may finally get an answer on my constant

>voice loss. Im fortunate to have a voice so far today. They think

>its because my thyroid gland might be enlarged and pressing up

>against my vocal cords. Other doc says its my allergies... go figure

>whose right? Guess Ill wait and see. Im hoping to start feeling

>better soon.

>

>

[Guest guest]

One thing I would do at least is to cut the one pill of PTU you're taking

now in half so you can take it in two doses. I think is right about

the dosage though, you need to use up all your stored thyroid with a higher

dosage before you can do a maintenance dose of 50-150mg/day. I started too

low and had a mild thyroid storm before realizing I needed to double my dose

(to 300mg/day). Now I'm down to 75g/day less than 4 months later.

Good luck! Nissa

Re: Update

>That is good news . However, why on such a low starting dose? I am

>suspicious that your doctor doesn't know how to use ATDs. Typically,

>someone is started on 150-300mg PTU per day, and the medication should

>always be taken in 3 divided doses (every 8 hours). Otherwise, you will

>have uneven levels, and that will not help you as much to reach remission,

>which is your goal. A less savvy doctor may be afraid of using ATDs, and

>start on a low dose, and then raise it when you " aren't responding. " Some

>doctors will tell you " you failed to respond to the ATDs, and now we must

>give you RAI. " Don't fall for it. Unless you are very mild hyperT, then you

>are on too low a dose. The high dose is used to block the thyroid

>completely, which will allow the excess hormone stored in your thyroid to

>be used up. Then, as this supply is drained, you decrease your doses

>smoothly as possible and in smaller and smaller increments, like landing a

>plane.

>

>

>At 10:41 AM 2/16/2004, you wrote:

>>Hi hope everyone had a wonderful weekend. We sure did. We made the

>>front page of the newspaper today! We went to the dog parade and our

>>dog made the front page. Our dog china was dressed in a pink dress.

>>She does this thing where she stands on her hind legs and prances

>>around like a ballerina. We had lots of fun!

>>

>>Anyways on another note, doctor finally gave me some medicine for my

>>thyroid. He put me on 50mg of PTU. I should be getting my ct scan

>>results sometime today. I may finally get an answer on my constant

>>voice loss. Im fortunate to have a voice so far today. They think

>>its because my thyroid gland might be enlarged and pressing up

>>against my vocal cords. Other doc says its my allergies... go figure

>>whose right? Guess Ill wait and see. Im hoping to start feeling

>>better soon.

>>

>>

>

>

>

[Guest guest]

One more thing...

Maintenance doses may go as low as 25mg/day, and even down to 12.5mg (1/4

pill) when nearing remission. We typically reduce the dose when FT3 and FT4

dip below the middle of the normal range (or the upper part of the normal

range, if that is where you feel best). Slow and steady wins the race.

At 12:06 PM 2/16/2004, you wrote:

>One thing I would do at least is to cut the one pill of PTU you're taking

>now in half so you can take it in two doses. I think is right about

>the dosage though, you need to use up all your stored thyroid with a higher

>dosage before you can do a maintenance dose of 50-150mg/day. I started too

>low and had a mild thyroid storm before realizing I needed to double my dose

>(to 300mg/day). Now I'm down to 75g/day less than 4 months later.

>

>Good luck! Nissa

[Guest guest]

Hmmmm... im not sure why its such a low dosage. I take the PTU

twice a day. I guess I should call and ask huh? He was going to

give me a RX of Tapazole but im not sure the dosage on that

either..i want to say it was maybe 10mg or so. So are you saying

that being on a low dosage is like not being treated?

Thanks again

> >Hi hope everyone had a wonderful weekend. We sure did. We made the

> >front page of the newspaper today! We went to the dog parade and

our

> >dog made the front page. Our dog china was dressed in a pink

dress.

> >She does this thing where she stands on her hind legs and prances

> >around like a ballerina. We had lots of fun!

> >

> >Anyways on another note, doctor finally gave me some medicine for

my

> >thyroid. He put me on 50mg of PTU. I should be getting my ct

scan

> >results sometime today. I may finally get an answer on my

constant

> >voice loss. Im fortunate to have a voice so far today. They

think

> >its because my thyroid gland might be enlarged and pressing up

> >against my vocal cords. Other doc says its my allergies... go

figure

> >whose right? Guess Ill wait and see. Im hoping to start feeling

> >better soon.

> >

> >

>

>

>

[Guest guest]

Sorry Nissa, i forgot to mention that i take it 2x a day.

Thanks

> >>Hi hope everyone had a wonderful weekend. We sure did. We made

the

> >>front page of the newspaper today! We went to the dog parade and

our

> >>dog made the front page. Our dog china was dressed in a pink

dress.

> >>She does this thing where she stands on her hind legs and prances

> >>around like a ballerina. We had lots of fun!

> >>

> >>Anyways on another note, doctor finally gave me some medicine

for my

> >>thyroid. He put me on 50mg of PTU. I should be getting my ct

scan

> >>results sometime today. I may finally get an answer on my

constant

> >>voice loss. Im fortunate to have a voice so far today. They

think

> >>its because my thyroid gland might be enlarged and pressing up

> >>against my vocal cords. Other doc says its my allergies... go

figure

> >>whose right? Guess Ill wait and see. Im hoping to start feeling

> >>better soon.

> >>

> >>

> >

> >

> >

[Guest guest]

Well maybe im on the milder side too. Im not sure what the number

values are..i didnt even bother asking. Im going to request copies

of all my labs that way I can keep tract of everything.

> it depends on your blood test values. I am mildly

hyperthyroid and

> have been for many years. I'm on 5 mg. of Tapazole. That's what

I started out

> with and right now I take it 6 days a week. What are your test

results?

>

> Sandy

>

>

>

[Guest guest]

Sandy's right, it depends on your lab results. You may be inadequately

treated, but if you are just at the top or slightly above the normal range

for FT3 and FT4 and have very mild symptoms, 50mg PTU will probably suffice.

10mg Tap is roughly equivalent to 100mg PTU (1mg of Tap = 10mg PTU).

At 01:22 PM 2/16/2004, you wrote:

>Hmmmm... im not sure why its such a low dosage. I take the PTU

>twice a day. I guess I should call and ask huh? He was going to

>give me a RX of Tapazole but im not sure the dosage on that

>either..i want to say it was maybe 10mg or so. So are you saying

>that being on a low dosage is like not being treated?

>Thanks again

>

[Guest guest]

At 01:36 PM 2/16/2004, you wrote:

>Well maybe im on the milder side too. Im not sure what the number

>values are..i didnt even bother asking. Im going to request copies

>of all my labs that way I can keep tract of everything.

This is a MUST! Always get copies of labs (I keep mine in a binder), and

write notes about how you felt at the time of the blood draw. This will be

important in finding your " set point, " which are the values at which you

feel your best. One thing I've learned is that we need to be on top of

everything and be proactive if we are to get the optimal care and results.

Best wishes,

[Guest guest]

In a message dated 2/20/2004 8:50:05 PM US Mountain Standard Time, tec1959@... writes:

What I am confused about is the doctor said Her eye

and joint pain don't go to together. She said just

because the eye is flare does not mean the joints are.

,

I probably missed a little of the history here. But I think what the doctor was saying is that iritis can flare even if your child's arthritis is in remission and vice versa. In that way, they don't "go together." (But 's first flare of iritis came at the same time she came out of remission with her arthritis, so there was a flare of both "together"). It sounds like has active arthritis in her knee. Is she saying doesn't? If it's swollen and warm, seems pretty obvious. Maybe she just means she doesn't think the arthritis is getting worse or spreading?

Diane (, 4, pauci)

[Guest guest]

In a message dated 2/20/04 10:50:04 PM Eastern Standard Time,

tec1959@... writes:

<<

She still is sore from where the car hit her. I can

see it in her daily routine and face. S >>

Hi :

Did I miss an email or something? When was hit by a car??????????

I don't know anything about the eye issues as Caitlin hasn't had those

symptoms (I pray she never does.). She has, however, had little bumps and spots

on

her hands and arms. It's part of her systemic rash. We see it almost every

night.

I am jealous you have snow. I hope can get out and play in it. Send

some our way, okay:)

Take care.

Patty

[Guest guest]

,

I'm so sorry , this is all so frustating.. its hard enough to deal with all thats going on, but when the doctors are not comunicating it must be twice as hard to deal with.

I hope you start to get more answers and less questions and find out whats going on with Rob..

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: snooksmama@... >Reply- > >Subject: update >Date: Tue, 24 Feb 2004 20:16:59 -0500 > >Hello all: >Well, we are no further on the diffusion capacity mystery. I am >thoroughly disgusted. Go figure. >Rob's pulmonary function tests were repeated last week because last year >his diffusion capacity had decreased. Now it has decreased even more. >Normal is 80-100, his was 65 last year, now it is 56. >Dr. Passo's office (the rheumy) never called back (I had left messages on >Thursday, and spoke with one of the nurses Friday, asking Dr Passo to >call when he got back on Monday), so I called the allergist this morning >to see if Passo's office had called them yesterday. They hadn't. So I >told the nurse that I needed to talk to Corbett (the >allergist/immunologist) because I had some questions. He got right on >the phone, he basically said that the diffusion capacity numbers were >lower and he wondered if it were because of methotrexate, azulfidine or >the JAS. He needs to hear from Passo. I told him I was going crazy >(should have said gone) and that if he thought Rob needed an appointment >with the pulmonologist then I was going to go on and schedule it. He said >he wanted to get the high resolution CT of the chest 1st before the >pulmonology consult, and so we went on and got that scheduled. It can't >be done until 3/11~can you believe that. >I called Dr Passo's office back, told them the allergist REALLY needed to >talk to him, and gave them the number and asked that they call. Hopefully >the 2 will talk and Corbett will get Passo's read on all this. >So basically, we are still nowhere (boy, I know that this sound familiar >to all of yoU!) >Rob is feeling bad the last 3 days since he played paintball, and now has >swelling in both knees and his left ankle. Said it felt like someone was >jumping up and down on his back today. >The pediatrician had wondered if the PFT's were off because his back pain >made it hard to take a deep breath, but Corbett said that the other >numbers would have been off too, and they weren't, so he didn't agree >with her theory at all. >I called Uncle Rusty tonight, he is doing good, waiting on the doctor's >opinion whether he can get his hip repaired or not, keep him in your >prayers. Hasn't been on the net much, has an apparent computer virus! >Hopes to be back online soon. >I'm walking for arthritis in May and trying to raise as much money as I >can. We have GOT to get better treatment and diagnostic tools for our >kids and the kids of the future!! > and Rob 14 Spondy Get fast, reliable access with MSN 9 Dial-up. Click here for Special Offer!

[Guest guest]

HI :

How frustrating trying to get the doctors to connect and one isn't getting

there.

I am not familiar with 'diffusion capacity'. What is it? Sounds like how

much air your lungs are getting with each breath. Am I close? Sounds very

uncomfortable.

How is Rob today? Any relief from the knee and ankle pain?

Say hello to Rusty.

Take care.

Patty

[Guest guest]

Hi, . Sorry things are so frustrating right now. Hopefully it will

get straightened out soon and the drs will talk. I just got info

yesterday on the walk here in Chicago and am really thinking about

trying it. Have you done it before? They also sent info on being an

honoree for and I am trying to talk him into it. Maybe even

walking with me. Michele (16,pauci & spondy)

update

Hello all:

Well, we are no further on the diffusion capacity mystery. I am

thoroughly disgusted. Go figure. Rob's pulmonary function tests were

repeated last week because last year his diffusion capacity had

decreased. Now it has decreased even more. Normal is 80-100, his was 65

last year, now it is 56. Dr. Passo's office (the rheumy) never called

back (I had left messages on Thursday, and spoke with one of the nurses

Friday, asking Dr Passo to call when he got back on Monday), so I called

the allergist this morning to see if Passo's office had called them

yesterday. They hadn't. So I told the nurse that I needed to talk to

Corbett (the

allergist/immunologist) because I had some questions. He got right on

the phone, he basically said that the diffusion capacity numbers were

lower and he wondered if it were because of methotrexate, azulfidine or

the JAS. He needs to hear from Passo. I told him I was going crazy

(should have said gone) and that if he thought Rob needed an appointment

with the pulmonologist then I was going to go on and schedule it. He

said he wanted to get the high resolution CT of the chest 1st before the

pulmonology consult, and so we went on and got that scheduled. It can't

be done until 3/11~can you believe that. I called Dr Passo's office

back, told them the allergist REALLY needed to talk to him, and gave

them the number and asked that they call. Hopefully the 2 will talk and

Corbett will get Passo's read on all this. So basically, we are still

nowhere (boy, I know that this sound familiar to all of yoU!) Rob is

feeling bad the last 3 days since he played paintball, and now has

swelling in both knees and his left ankle. Said it felt like someone was

jumping up and down on his back today. The pediatrician had wondered if

the PFT's were off because his back pain made it hard to take a deep

breath, but Corbett said that the other numbers would have been off too,

and they weren't, so he didn't agree with her theory at all. I called

Uncle Rusty tonight, he is doing good, waiting on the doctor's opinion

whether he can get his hip repaired or not, keep him in your prayers.

Hasn't been on the net much, has an apparent computer virus!

Hopes to be back online soon.

I'm walking for arthritis in May and trying to raise as much money as I

can. We have GOT to get better treatment and diagnostic tools for our

kids and the kids of the future!! and Rob 14 Spondy

[Guest guest]

:

Thanks for your kind thoughts.

We haven't done the arthritis walk before. We are looking forward to it

though! Rob intends to try and walk, don't know how far he'll get. He

will push himself to any lengths he has to though. What a trooper.

Love,

and Rob 14 Spondy

On Wed, 25 Feb 2004 12:38:14 -0600 " Tepper, Michele "

<MTepper@...> writes:

> Hi, . Sorry things are so frustrating right now. Hopefully it

> will

> get straightened out soon and the drs will talk. I just got info

> yesterday on the walk here in Chicago and am really thinking about

> trying it. Have you done it before? They also sent info on being an

> honoree for and I am trying to talk him into it. Maybe even

> walking with me. Michele (16,pauci & spondy)

>

> update

>

>

> Hello all:

> Well, we are no further on the diffusion capacity mystery. I am

> thoroughly disgusted. Go figure. Rob's pulmonary function tests

> were

> repeated last week because last year his diffusion capacity had

> decreased. Now it has decreased even more. Normal is 80-100, his was

> 65

> last year, now it is 56. Dr. Passo's office (the rheumy) never

> called

> back (I had left messages on Thursday, and spoke with one of the

> nurses

> Friday, asking Dr Passo to call when he got back on Monday), so I

> called

> the allergist this morning to see if Passo's office had called them

> yesterday. They hadn't. So I told the nurse that I needed to talk

> to

> Corbett (the

> allergist/immunologist) because I had some questions. He got right

> on

> the phone, he basically said that the diffusion capacity numbers

> were

> lower and he wondered if it were because of methotrexate, azulfidine

> or

> the JAS. He needs to hear from Passo. I told him I was going crazy

> (should have said gone) and that if he thought Rob needed an

> appointment

> with the pulmonologist then I was going to go on and schedule it.

> He

> said he wanted to get the high resolution CT of the chest 1st before

> the

> pulmonology consult, and so we went on and got that scheduled. It

> can't

> be done until 3/11~can you believe that. I called Dr Passo's office

> back, told them the allergist REALLY needed to talk to him, and

> gave

> them the number and asked that they call. Hopefully the 2 will talk

> and

> Corbett will get Passo's read on all this. So basically, we are

> still

> nowhere (boy, I know that this sound familiar to all of yoU!) Rob

> is

> feeling bad the last 3 days since he played paintball, and now has

> swelling in both knees and his left ankle. Said it felt like someone

> was

> jumping up and down on his back today. The pediatrician had wondered

> if

> the PFT's were off because his back pain made it hard to take a

> deep

> breath, but Corbett said that the other numbers would have been off

> too,

> and they weren't, so he didn't agree with her theory at all. I

> called

> Uncle Rusty tonight, he is doing good, waiting on the doctor's

> opinion

> whether he can get his hip repaired or not, keep him in your

> prayers.

> Hasn't been on the net much, has an apparent computer virus!

> Hopes to be back online soon.

> I'm walking for arthritis in May and trying to raise as much money

> as I

> can. We have GOT to get better treatment and diagnostic tools for

> our

> kids and the kids of the future!! and Rob 14 Spondy

>

>

>

>

>

[Guest guest]

SHeila,, Good Job girl!! I am so glad you passed your test.. that is great... It

looks like you are eating right and doing okay, I am very glad-- gotta run girl

I am going to mcdonalds to get me a choclate shake...lol havent had one in a

long time.. that is my idea since I work out all week and do good I can have a

shake on friday.,..lol take care girl Keisha

Kemal And Sheila Kalajdzic <kemalandsheila@...> wrote:Hi guys! i only have

a few minutes before work. , I'll respond

to your post tonight or tomorrow.

I wanted to let ya'all know a little about what's happened the past

few days.

I saw my dietician, and it was so great to see her again! She told

me not to worry about becoming diabetic. She said even though my lab

was in the high range at 100, she said 100 is not bad at all. She

also told me that with Hashi's those antibodies can skew those

results.

I know our antibodies can skew our TSH, etc, also our ANA antibodies

and other tests. Have ya'all heard or read that they can also mess

with glucose level test results?

She told me I am 100% on track with my diet and that I am doing all

the right things.

She did suggest that I get away from that math lab for at least a

half hour and eat a nice meal vs. jerky and fruit that I'm snacking

on. She said those are fine snacks, but that I'll probably feel

better if I eat a meal and get away. I think she's right.

she also told me the reason I feel nauseated in the mornings has to

do with my sleep cycle. she said that the hormones that make us

hungry are different when we are on a second shift or third shift

schedule. she said it's normal that I don't feel hungry until about

2 p.m. and that I feel a little nauseated. I can't remember her

explanation too well, but I do know it has something to do with

melatonin and some other hormones.

Anyway, I BARELY passed my math test. I got a 75. the C range is 79-

75. There are no D's given in my algebra class. Anything below 75 is

flunking. So I got by just by the skin of my teeth.

The good news is she is letting us rework the problems we missed. If

we get them right we get 1/2 the credit they were originally worth.

She said only one person in the entire class got a better grade on

this test than they did on the previous test. She thinks part of it

is because we had 5 different teachers in a two-week period while

she was out recovering from her car accident.

So I'm very pleased I have the chance to bring up my grade.

I took care of myself last night. I went to bed at 8 p.m. after

watching a movie with Kemal. I slept until 8 a.m. this morning. I

needed it!!!!

I gotta run guys! Talk to you later! Hugs, Sheila