Re: is' progress today..........

September 26, 2007

Raquel,

No matter on a child. If it is Pain then it is a emergency. You can called the Hospital if it is a Children's Hospital and ask what Rhuemy is on Call that night. It will be one on call to see y'all.

RobbinSee what's new at AOL.com and Make AOL Your Homepage.

September 26, 2007

You mean you could not set up an

appointment to see the teacher? That does not sound right. She should want to

be informed of a problem with a student. I would try a note and see if she will

arrange to meet with you at some point soon. She should be willing to do that. It

is lucky the principal has some experience with a similar disease. He may be

more compassionate.

Good thing you made an appt. It is good

advice to educate yourself. Education is always a good thing. You are not

trying to tell the drs their job or what to do, but rather understand better

what they are telling you. Remember, you are paying them for their expertise.

You deserve answers you can understand. It is better to know what they are

talking about and less frightening for everyone. Michele ( 20,

spondy)

From: [mailto: ] On Behalf Of raquels_cakes

Sent: Tuesday, September 25, 2007

10:29 PM

Subject: is' progress

today..........

Today after playing phone tag with the dr I went to

school. I asked

to see the teacher. no. I said ok how about the nurse, counsler, or

even the principle. So i spoke with the principle. It went good his

wife has RA. They are going to help. I didn't go forward with the

504 but I didn't think about the absences.

I got frustrated with the dr and just made an appt. They are doing a

lyme titer. There aren't any stronger pain meds they will give. The

prednisone should have done something by now and they agree she

shouldn't have to put up with daily pain until the 23rd. They will

hopefully call tomorrow with a sooner appt. they are trying to pull

some strings. dr said in worse case take her to Vanderbilt Childrens

Emergancy room. She would get a faster appt. see a rheumy thats on

call or maybe admit her and run tests.

Everyone has told me to get as much info as possible befor the appt.

Except my dh, he says stay off the internet. But I remember when I

was in labor with my son, my water broke and it had meconium and

after the nurse and dr left the room my dh asked " now whats going

on? " .

Will keep you in touch.

September 26, 2007

I didn't try to set up an appt. with the teacher. I just talked to

the principle and then he talked with the teacher and is.

She had a rough night and my dh and I argued. after about an hour of

her crying I got my dh up and he talked to her and said to there

isn't anything we can do. I said yes there is we can take her to

vanderbilt. dh says no insurance won't pay its not an emergancy. I

cried he said I made him out to be the bad guy and I said if the she

fits. Luckily she did finally fall to sleep and felt better. Today

I pointed out a few times when we went to the ER and it was covered.

He said to get more info and we will take her tonight if its the same

situation. After a couple things last night I know that he is having

a problem with emotions. and he is stubborn.

Raquel

>

> You mean you could not set up an appointment to see the teacher?

That

> does not sound right. She should want to be informed of a problem

with a

> student. I would try a note and see if she will arrange to meet

with you

> at some point soon. She should be willing to do that. It is lucky

the

> principal has some experience with a similar disease. He may be more

> compassionate.

>

> Good thing you made an appt. It is good advice to educate yourself.

> Education is always a good thing. You are not trying to tell the drs

> their job or what to do, but rather understand better what they are

> telling you. Remember, you are paying them for their expertise. You

> deserve answers you can understand. It is better to know what they

are

> talking about and less frightening for everyone. Michele (

20,

> spondy)

>

September 26, 2007

Raquel,

I know of a situation that our Doctor told us about. A family lived in Fargo North Dakota. They went to a Doctor on Friday with their child. They didn't like the information they were given, didn't like the doctor, or whatever, drove 250 miles to the University of MN and went to the emergency room at 300am. They admitted their daughter, and our Rheumatologist saw her on Saturday morning. (He too had waiting for months to get into see him) Find out for sure where a Ped's Rheumatologist will see patients, and then make sure you bring her to that emergency room. Also, I have learned don't medicate her. Unfortunately make sure she is in pain and the Dr.'s can see that when you arrive. Maybe they will agree to admit her faster. Just a thought.

and Allie (11 poly)

From: [mailto: ] On Behalf Of raquels_cakesSent: Wednesday, September 26, 2007 11:54 AM Subject: Re: is' progress today..........

I didn't try to set up an appt. with the teacher. I just talked to the principle and then he talked with the teacher and is. She had a rough night and my dh and I argued. after about an hour of her crying I got my dh up and he talked to her and said to there isn't anything we can do. I said yes there is we can take her to vanderbilt. dh says no insurance won't pay its not an emergancy. I cried he said I made him out to be the bad guy and I said if the she fits. Luckily she did finally fall to sleep and felt better. Today I pointed out a few times when we went to the ER and it was covered. He said to get more info and we will take her tonight if its the same situation. After a couple things last night I know that he is having a problem with emotions. and he is stubborn.Raquel >> You mean you could not set up an appointment to see the teacher? That> does not sound right. She should want to be informed of a problem with a> student. I would try a note and see if she will arrange to meet with you> at some point soon. She should be willing to do that. It is lucky the> principal has some experience with a similar disease. He may be more> compassionate. > > Good thing you made an appt. It is good advice to educate yourself.> Education is always a good thing. You are not trying to tell the drs> their job or what to do, but rather understand better what they are> telling you. Remember, you are paying them for their expertise. You> deserve answers you can understand. It is better to know what they are> talking about and less frightening for everyone. Michele ( 20,> spondy)> > > > > >>

September 26, 2007

Your dh sounds very much like mine. My dh says if you take a kid to

the doctor, of course the doc will find something " wrong " to make

more money. This is dh's method of coping. I take care of medical

appointments, Miranda comes to me with any problems, and I of course

do the ER runs and consult calls and school stuff, and well,

everything. I like to learn as much as I can about everything that is

going on. That's how I cope. DH has improved with time. He even went

to the rheumy with me a couple of times, and now he will administer

her meds when I am unavailable or busy. Dads just seem to take things

extra hard for whatever reason. Your dh will come around in his own

time. I know it can be frustrating. I remember when Miranda was first

diagnosed with arthritis, I called my dh from the hospital while we

were waiting for x-rays, and he made me so angry that I hung up on

him and turned off my cell phone. I just cried and cried. But then I

wiped my tears, joined my daughter in the waiting room, and was there

to smile and support her and tell her it was all going to be alright.

That's my job. That's what I have to do. That is what I will do for

as long as God leaves me on this Earth. You will find the strength to

get through this. When you need support, you will find it here. We

all find support from each other.

It takes a village to raise a child... even if it is a virtual

village, and especially when it is a special child!

Hang in there!

Sheila (Miranda, 12, JIA/MMD)

September 26, 2007

I didn't think about how many absences there could be. I talked to

my sister today who is a 5th grade teacher. She had one main thing to

say " no one working in a school wants to have a 504 plan in

place " . " Too much work "

The dr office called and her regular dr is calling the rheumy to see

what can be done about the appointment situation. Hopefully it will

help. Her lyme test was negative.

We have great insurance. My hubby works for a local hca hospital.

Vanderbilt childrens hospital will be the one i take her to. There

would surely be a ped rheumy on call. But there is one office at

vanderbilt and there are only to drs there.

thanks

September 26, 2007

RaquelBecki Larson on this list has a son that used to go to Vanderbilt and she knows that office quite well. I think she got some strings pulled to get her son in the first time. I haven't seen her posting very much anymore, but Becki, if you are out there, please chime in!!Raquel, I know that others have said that the ER is a good idea, but in our experience, it has not. Most rheumies don't do ER calls. Period. And if the hospital doesn't feel your child is sick enough to be admitted, the rheumy won't be on call to the ER. If you could get her admitted, well, then that is another story. Hospitals have very very strict criteria for admitting anyone these days. If her labs looked ok, etc, they might not admit. Someone who suggested letting her get in pain was actually giving you good advice..the sicker she looks when you take her to the ER, the higher the chance of getting her admitted. Otherwise, in my experience, the ER is not a good place to seek treatment for what may be a chronic illness. The ER docs are just not trained to deal with our kids.

I hope I haven't offended anyone with my comments. Being both a nurse and a mom, I have seen a lot over the years...the system is just so broken.

Please keep us posted, ok? We are here for you.

and Rob 18 Spondy Re: is' progress today.......... > I didn't think about how many absences there could > be. I talked to > my sister today who is a 5th grade teacher. She had one > main thing to > say "no one working in a school wants to have a 504 plan in > place". "Too much work"> > The dr office called and her regular dr is calling the rheumy to > see > what can be done about the appointment situation. > Hopefully it will > help. Her lyme test was negative.> > We have great insurance. My hubby works for a local hca > hospital. > Vanderbilt childrens hospital will be the one i take her > to. There > would surely be a ped rheumy on call. But there is one > office at > vanderbilt and there are only to drs there.> > thanks> >

September 26, 2007

I actually have somewhat of a plan. Today she rested alot

feels pretty good and tommorrow she will go to school. She has cheer

practice and will be allowed to do what she feels like. All this

with no pain meds and I'll bet tomorrow night she will feel like

going to the er. hopefully with a good experiance. My hubby is

understanding a little better I think with the neg lyme and the

regular dr telling us there is nothing else he can do for pain.

Any advise is apreciated.

Thanks Raquel

>

> Raquel

> Becki Larson on this list has a son that used to go to Vanderbilt

and she knows that office quite well. I think she got some strings

pulled to get her son in the first time. I haven't seen her posting

very much anymore, but Becki, if you are out there, please chime in!!

> Raquel, I know that others have said that the ER is a good idea,

but in our experience, it has not. Most rheumies don't do ER calls.

Period. And if the hospital doesn't feel your child is sick enough to

be admitted, the rheumy won't be on call to the ER. If you could get

her admitted, well, then that is another story. Hospitals have very

very strict criteria for admitting anyone these days. If her labs

looked ok, etc, they might not admit. Someone who suggested letting

her get in pain was actually giving you good advice..the sicker she

looks when you take her to the ER, the higher the chance of getting

her admitted. Otherwise, in my experience, the ER is not a good place

to seek treatment for what may be a chronic illness. The ER docs are

just not trained to deal with our kids.

> I hope I haven't offended anyone with my comments. Being both a

nurse and a mom, I have seen a lot over the years...the system is

just so broken.

> Please keep us posted, ok? We are here for you.

> and Rob 18 Spondy

>

> Re: is' progress today..........

>

> > I didn't think about how many absences there could

> > be. I talked to

> > my sister today who is a 5th grade teacher. She had one

> > main thing to

> > say " no one working in a school wants to have a 504 plan in

> > place " . " Too much work "

> >

> > The dr office called and her regular dr is calling the rheumy to

> > see

> > what can be done about the appointment situation.

> > Hopefully it will

> > help. Her lyme test was negative.

> >

> > We have great insurance. My hubby works for a local hca

> > hospital.

> > Vanderbilt childrens hospital will be the one i take her

> > to. There

> > would surely be a ped rheumy on call. But there is one

> > office at

> > vanderbilt and there are only to drs there.

> >

> > thanks

> >

>

September 26, 2007

Raquel:

I have to disagree with your sister. My sister is a special education teacher and would not work without plans on all her kids. She helped me immensely when we were in the early stages of the plan. It was also Hannah's principal that suggested to me that we pursue a plan for her.

I strongly urge you to pursue this. It is for the protection of your daughter and her rights. Just my 2 cents.

Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Re: is' progress today..........

I didn't think about how many absences there could be. I talked to my sister today who is a 5th grade teacher. She had one main thing to say "no one working in a school wants to have a 504 plan in place". "Too much work"The dr office called and her regular dr is calling the rheumy to see what can be done about the appointment situation. Hopefully it will help. Her lyme test was negative.We have great insurance. My hubby works for a local hca hospital. Vanderbilt childrens hospital will be the one i take her to. There would surely be a ped rheumy on call. But there is one office at vanderbilt and there are only to drs there.thanks

September 26, 2007

I had an IEP though I didn't really need it... 504 would have served just as nicely. I think having a 504 is necessary for a child with JA or any chronic illness to insure that rights are met otherwise, the schools can throw decisions around and change their mind at will. We went through this for years when i had neither a 504 or IEP... one person put into one action plan that was great,t han another person didn't follow through with it... or the teacher didnt cooperate and than who do you go to or someone leaves.. and than who do you go to.. it was ridiculous.... 504's ensure that things are properly in writing with a team and that there is always someone to go to and that must answer for problems that come up. For the teacher that said " oh, it's too much work'.. maybe it is.. but they aren't the ones on the end with the sick child.. they are the ones dealing with one tiny section of aggrivation they might not like.. not the day to day problems that can come up where the plan in the 504 is a lifesaver... IssadoraOn 9/26/07, raquels_cakes <raquels_cakes@...> wrote: