New member

[Guest guest]

In a message dated 11/15/2005 7:35:13 AM Eastern Standard Time,

nelson8706@... writes:

Hi. I'm le, most people call me Dannie. I'm 18 and I live in

Michigan too. I have been having seizures but when they did an EEG I

didn't have one so they couldn't diagnose me with seizures. They also

did an MRI and my left temporal lobe isn't symmetrical with my right.

and have now done nothing further. I was wondering if any of you had an

EEG and didn't have a seizure.

~~~Dannie

..

..

>>> EEGs do not always find seizure activity. This is well known. Many

people have seizures that do not show up on EEGs.

BUT, you do know that your brain is not symmetrical.

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

Hi Dannie,

I've had 2 'normal' EEG's. It's can be very frustrating, not only because

if it WERE normal, you; wouldn't have epilepsy.

I would give my eye teeth to go back to being 'normal' again.

MY original neuro told me that very rarely do they pick up seizure activity

on EEG's. I wondered why then, was I put in the position of having to pull

glue out of my hair for a week!

susan´

[Guest guest]

>

> Hi. I'm le, most people call me Dannie. I'm 18 and I live in

> Michigan too. I have been having seizures but when they did an EEG I

> didn't have one so they couldn't diagnose me with seizures. They

also

> did an MRI and my left temporal lobe isn't symmetrical with my

right.

> and have now done nothing further. I was wondering if any of you had

an

> EEG and didn't have a seizure.

>

> ~~~Dannie

>

Hi Dannie,

Im Elaina im also 18 and live in michigan. I have had 2 EEG's and

never had a seizure durring them but they still told me that the

results of them were abnormal. I have also had a ton of MRIs and CAT

scans. those all came back normal for me other than my pituitary glad

is larger than normal. Did they put you on meds or anything like that??

Elaina

[Guest guest]

it took me so long to get back. No, Elaina, they never did put me on any meds or

anything. They haven't done anything since my EEG came back normal.

Elaina <mathewsmans_girl87@...> wrote:

>

> Hi. I'm le, most people call me Dannie. I'm 18 and I live in

> Michigan too. I have been having seizures but when they did an EEG I

> didn't have one so they couldn't diagnose me with seizures. They

also

> did an MRI and my left temporal lobe isn't symmetrical with my

right.

> and have now done nothing further. I was wondering if any of you had

an

> EEG and didn't have a seizure.

>

> ~~~Dannie

>

Hi Dannie,

Im Elaina im also 18 and live in michigan. I have had 2 EEG's and

never had a seizure durring them but they still told me that the

results of them were abnormal. I have also had a ton of MRIs and CAT

scans. those all came back normal for me other than my pituitary glad

is larger than normal. Did they put you on meds or anything like that??

Elaina

[Guest guest]

Hi & Welcome,

My father passed on after a 3yr battle with pbc. Of course they didn't have

the medications they have today. Although I have pbc, my two brothers are

healthy. So in answer to your question about becoming sick, not

necessarily. It would be , in my opinion, prudent to have your yearly

check-ups and be sure you doc has your medical history.

I have a son 34 and a daughter 19. I tell them to add our family health

history to their own and to be sure to have their yearly phyical exams. Its

not uncommon to have families with a history of autoimmune diseases, this

doesn't mean that you will also become sick. I know this situation is alot

to think about , but I hope you try not to spend too much time worrying

about it, stress is not good for your health.

Take care,

Hugs,

Ellen

>From: " melegginton " <melegginton@...>

>Reply-

>

>Subject: [ ] New member

>Date: Thu, 08 Dec 2005 00:04:28 -0000

>

>Hi I have just discovered this site. In September this year I lost my

>dad to autoimmune cholangitis and I have been looking for a support

>group so i can talk to people who know what i have been and am going

>through. My dad's sister has just been diagnosed with PBC. Is this a

>common thing to run in families and if so have i got this legacy to

>look forward too??

>

>

>

>

>

>

_________________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfee®

Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

In a message dated 12/9/05 8:33:54 PM Central Standard Time,

meyerfamily8@... writes:

> Hi all,

> We have been searching the net for info on juvenile arthritis. We

> have a 11 year old that the doctor just dx after lab work, OT evals,

> and PT eval. We are being referred to a rheumatologist that

> specializes in children. The soonest we can get into that doc is

> March 30th. In the mean time they prescribed 600mg Ibuprofen three

> times per day. We go to an OT for strengthening exercises, we are

> starting pool therapy in the next couple weeks, we tried muscle rub

> ointment and heat packs for pain. It just seems nothing helps. He is

> so painful in the knees and back. Stiffness in knees, back and hands

> especially. Its really hard to just watch him suffer each day just

> to go to school. When he comes home from school all he wants to do

> is sleep.

> We also have 5 other children the youngest two are ages 7 and 8 they

> both have autism, sensory integration dysfunction, cerebral palsy,

> and epilepsy. So we are in occupational and physical therapy several

> times per week.

> Just kind of wondering is there anything else we should be doing for

> our 11 year old? What will the rheumatologist do on the first visit?

> What are the best treatments? They do let him use a computer at

> school to do his work because its difficult for him to write due to

> poor fine motor skills, is there anything to help make writing less

> painful?

> Sorry so many questions at once but we are just beginning this

> journey. Thanks for any info. Christy

>

My daughter who is 10 went through the same thing. I was lucky though

because I kept taking her back to her pediatrician and keeping him aware of her

loss

of movement, fevers. He asked me to take her to a specialist. I did so.

They ordered mri's. He asked me to give her the adult dose of advil just like

you. No help. They put her in the hospital to run more test. After a week,

they found nothing wrong, yet she could not walk or hold a glass of water.

School was heck because she could not walk. I borrowed a wheelchair so she

could

get around. When she got a rash, her pediatrician called her pediatric

rheumatologist and got an appointment that same week. I was told that I would

be

seen between patients. No problem. We waited and waited.

It is a good idea if you keep a journal and write down what you and show it

to the rheumatologist on your first visit. Write down if he has any fevers,

loss of range of motion, rashes, etc.

After she was seen, the doctor prescribed prednisone to lessen the

inflammation. It did help. He did tell us that the medicine is not intended to

be

taken for a long time. After a week she was up and walking and returning to

normal.

Later on, he added methotrexate and folic acid. She kept getting better and

this could be seen on her labwork. She is currently taking Enbrel shots and

is doing well.

Of course since she is not that active any overdoing of any exercise will

cause her to be sore or have a flair. She cannot write that much. Last year

she

had to learn her times tables and her teacher thought the best way of

learning them was writing them and would make her write 9 pages of times tables.

For

this reason, we specified which modifications I wanted on her IEP through the

504 program at school. At the beginning of the year I will talk to the

teacher. If I see that it is too much I will sit down and write it. If the

teacher has any problem they have to talk to me. Some teachers are not that

understanding. Last year she had a mean one, but I made her realize that she

has to

abide by the modifications that are listed in her school records. You have to

be your child's advocate.

I hope this helps.

o Salas

[Guest guest]

Dear Christy,

Welcome and at the same time I'm so sorry that you had to come

here. I wanted to let you know that we all understand how hard this

time is for your child & family. My daughter has only been diagnosed

since March so my understanding of this condition is not as huge as

others on this board but since my daughter is also dealing with hand

troubles maybe I can help give you some ideas. Using the computer at

school is great; hopefully homework can be completed that way also.

We also have permission for Belle to record class discussions on a

personal tape recorder (she hasn't done that yet). She has had to

ask for her notes to be written for her - actually the teacher just

copied his notes and gave them to her. At home we use microwave rice

bags to put heat on painful areas (some kids like cold more, but

Belle loves the heat). Long baths or showers are her favorite way to

start the day but she slips into the tub after school quite often

too .As far as the writing that he HAS to do, try the larger

diameter pencil … if he'll write with them. Belle likes the large

foamy pencil grips more that the larger pencils. We have found that

taking breaks from the writing assignments helps, instead of trying

to get it all done in one time. A friend of mine told me about this

fun thing she does for her daughter, heat up a bowl of raw rice in

the microwave and let them stick there hands in and play around …

use a BIG bowl, its very messy! Your right, nothing is harder that

watching your child suffer. Belle has not had her pain completely

controlled yet, its better but not like before Arthritis.This is a

hard thing to get ahead of , you control one pain and a new one

shows up ... Thankfully this is a very compassionate place to come

get help and ideas that get you through the bad days. It sounds like

you have your hands full at home, if you need to talk we are just

one click away!

Teri (Belle 11y/o Psoriatic arthritis)

>

> Hi all,

> We have been searching the net for info on juvenile arthritis. We

> have a 11 year old that the doctor just dx after lab work, OT

evals,

> and PT eval. We are being referred to a rhumetoligist that

> specializes in children. The soonest we can get into that doc is

> March 30th. In the mean time they prescribed 600mg Ibuprophen

three

> times per day. We go to an OT for strengthening exercises, we are

> starting pool therapy in the next couple weeks, we tried muscle

rub

> ointment and heat packs for pain. It just seems nothing helps. He

is

> so painful in the knees and back. Stiffness in knees, back and

hands

> especailly. Its really hard to just watch him suffer each day just

> to go to school. When he comes home from school all he wants to do

> is sleep.

> We also have 5 other children the youngest two are ages 7 and 8

they

> both have autism, sensory integration dysfunction, cerebral palsy,

> and epilepsy. So we are in occupational and physical therapy

several

> times per week.

> Just kind of wondering is there anything else we should be doing

for

> our 11 year old? What will the rhumetologist do on the first

visit?

> What are the best treatments? They do let him use a computer at

> school to do his work because its difficult for him to write due

to

> poor fine motor skills, is there anything to help make writing

less

> painful?

> Sorry so many questions at once but we are just beginning this

> journey. Thanks for any info. Christy

>

[Guest guest]

Hello All,

My family and I are new here also. My 9 yr old daughter

had poly JRA. It took well over a year after I 1st thought

something was wrong for her to be diagnosed with JRA and it was

almost by accident.

Thankfully, is responding well to her meds (metho, plaq and

naprosyn).

Her hands still ache when she writes for long periods of time, even

with the meds but because outwardly she doesn't look like she has

anything wrong with her, her teacher seems not to acknowledge she

has a problem.

She has " allowed " her to use a squishy as we call it (for lack of a

better term) on her pencil that her o/t gave her. It's a round

piece of foam that slips over the pencil. It prevents her from

gripping it too tightly and gives her added stability. It is larger

in diameter than the kind they sell at the store.

I received some pamphlets in the mail from the Arthritis Foundation

recently. One was a guide for teachers. When my daughter tried to

give it to her she told her she didn't need it to throw it away. My

next step is going to be a meeting with the principal.

I hope you son gets some pain relief soon. It's so hard to watch

them hurt and not be able to help them. Hot showers 1st thing in

the morning always help when is stiff. Being fairly new to

this I'm afraid I'm not much help but the people that I have talked

to here are very helpful. I have found comfort just in knowing I'm

not alone and have somewhere to go for advice.

and

>

> Hi all,

> We have been searching the net for info on juvenile arthritis. We

> have a 11 year old that the doctor just dx after lab work, OT

evals,

> and PT eval. We are being referred to a rhumetoligist that

> specializes in children. The soonest we can get into that doc is

> March 30th. In the mean time they prescribed 600mg Ibuprophen

three

> times per day. We go to an OT for strengthening exercises, we are

> starting pool therapy in the next couple weeks, we tried muscle

rub

> ointment and heat packs for pain. It just seems nothing helps. He

is

> so painful in the knees and back. Stiffness in knees, back and

hands

> especailly. Its really hard to just watch him suffer each day just

> to go to school. When he comes home from school all he wants to do

> is sleep.

> We also have 5 other children the youngest two are ages 7 and 8

they

> both have autism, sensory integration dysfunction, cerebral palsy,

> and epilepsy. So we are in occupational and physical therapy

several

> times per week.

> Just kind of wondering is there anything else we should be doing

for

> our 11 year old? What will the rhumetologist do on the first

visit?

> What are the best treatments? They do let him use a computer at

> school to do his work because its difficult for him to write due

to

> poor fine motor skills, is there anything to help make writing

less

> painful?

> Sorry so many questions at once but we are just beginning this

> journey. Thanks for any info. Christy

>

[Guest guest]

I just wanted to take a minute to welcome you to our group. I see

that you have already received some great responses on how to modify

school work etc. to limit the hand-writing requirements...

My daughter is 10 and this is her third year with jra. It was very

difficult to get things under control in the beginning and I know

how challenging it is to wait for that first rheumy appt. You might

try calling their office and explaining how much pain your child is

having and ask if you could be kept on " stand by " so that if they

have a cancellation you could go.

I would like to recommend a book to you called " Growing Pains " by

Dr. Lehman. You can order it thru amazon.com It does a great job

explaining the different types of arthritis, treatment options, and

school modifications etc...

When my daughter was having severe wrist pain we often did her

homework together and then she would just " dictate " the answer and I

would write them...This isn't ideal because writing does help to

reinforce learning and so she struggled more on her tests etc. than

she normally would. But if your child is to the point that he can't

tolerate doing any writing or typing then this might be an option.

Whenever any work was dictated I would just write at the top of the

page " dictated by Aundrea " and I would sign it so that the teacher

was informed.

Please feel to post as often as you need to....The beginning of this

disease is so challenging....but it Will get better.

Blessings,

(Aundrea 10 systemic jra) -

-- In , " meyerfamily8 " <meyerfamily8@y...>

wrote:

>

> Hi all,

> We have been searching the net for info on juvenile arthritis. We

> have a 11 year old that the doctor just dx after lab work, OT

evals,

> and PT eval. We are being referred to a rhumetoligist that

> specializes in children. The soonest we can get into that doc is

> March 30th. In the mean time they prescribed 600mg Ibuprophen

three

> times per day. We go to an OT for strengthening exercises, we are

> starting pool therapy in the next couple weeks, we tried muscle

rub

> ointment and heat packs for pain. It just seems nothing helps. He

is

> so painful in the knees and back. Stiffness in knees, back and

hands

> especailly. Its really hard to just watch him suffer each day just

> to go to school. When he comes home from school all he wants to do

> is sleep.

> We also have 5 other children the youngest two are ages 7 and 8

they

> both have autism, sensory integration dysfunction, cerebral palsy,

> and epilepsy. So we are in occupational and physical therapy

several

> times per week.

> Just kind of wondering is there anything else we should be doing

for

> our 11 year old? What will the rhumetologist do on the first

visit?

> What are the best treatments? They do let him use a computer at

> school to do his work because its difficult for him to write due

to

> poor fine motor skills, is there anything to help make writing

less

> painful?

> Sorry so many questions at once but we are just beginning this

> journey. Thanks for any info. Christy

>

[Guest guest]

--Hi Christy,

Welcome to our little group. I think you have received some great

advise. Please ask any and all questions you might have. Don't be

shy. We are here to help. This list was a godsend to me when my son

was 1st dx 2 1/2 years ago.

Its the worse at the begining, hard to believe, but it does get

easier as your knowleade grows and direction is given to treatment

plans. hang in there.

hugs Helen and (8,systemic)

- In , " meyerfamily8 " <meyerfamily8@y...>

wrote:

>

> Hi all,

> We have been searching the net for info on juvenile arthritis. We

> have a 11 year old that the doctor just dx after lab work, OT

evals,

> and PT eval. We are being referred to a rhumetoligist that

> specializes in children. The soonest we can get into that doc is

> March 30th. In the mean time they prescribed 600mg Ibuprophen

three

> times per day. We go to an OT for strengthening exercises, we are

> starting pool therapy in the next couple weeks, we tried muscle

rub

> ointment and heat packs for pain. It just seems nothing helps. He

is

> so painful in the knees and back. Stiffness in knees, back and

hands

> especailly. Its really hard to just watch him suffer each day just

> to go to school. When he comes home from school all he wants to do

> is sleep.

> We also have 5 other children the youngest two are ages 7 and 8

they

> both have autism, sensory integration dysfunction, cerebral palsy,

> and epilepsy. So we are in occupational and physical therapy

several

> times per week.

> Just kind of wondering is there anything else we should be doing

for

> our 11 year old? What will the rhumetologist do on the first

visit?

> What are the best treatments? They do let him use a computer at

> school to do his work because its difficult for him to write due

to

> poor fine motor skills, is there anything to help make writing

less

> painful?

> Sorry so many questions at once but we are just beginning this

> journey. Thanks for any info. Christy

>

[Guest guest]

-Hi ,

Welcome to the group. My son, has lots of issues with his

hands. He has an IEP in place and has an alhpasmart computer to type

on. His school is teaching him to type at a younger age, so that hes

able to type well once he reaches the higher grades and needs to

take more notes. I also do his homework for him, well, i do the

writting, he has to tell me what to write. We only do this on days

when his hands are tired and he doesnt want to/ cant write. Most

time he will start the paper, and i will finish it for him. he is

also allowed to skip some of the work in school, the stuff that

doesnt benefit him, like coloring pictures. He has awful fine motor

skills, he hates to color as he cannot stay in the lines so he skips

most coloring work.

Good luck to you, keep in touch with the list and hopefully we can

be of some help to you....

hugs Helen and (8,systemic)

-- In , " shelbert416 " <michellecoomes@s...>

wrote:

>

> Hello All,

>

> My family and I are new here also. My 9 yr old daughter

> had poly JRA. It took well over a year after I 1st thought

> something was wrong for her to be diagnosed with JRA and it was

> almost by accident.

>

> Thankfully, is responding well to her meds (metho, plaq

and

> naprosyn).

>

> Her hands still ache when she writes for long periods of time,

even

> with the meds but because outwardly she doesn't look like she has

> anything wrong with her, her teacher seems not to acknowledge she

> has a problem.

>

> She has " allowed " her to use a squishy as we call it (for lack of

a

> better term) on her pencil that her o/t gave her. It's a round

> piece of foam that slips over the pencil. It prevents her from

> gripping it too tightly and gives her added stability. It is

larger

> in diameter than the kind they sell at the store.

>

> I received some pamphlets in the mail from the Arthritis

Foundation

> recently. One was a guide for teachers. When my daughter tried

to

> give it to her she told her she didn't need it to throw it away.

My

> next step is going to be a meeting with the principal.

>

> I hope you son gets some pain relief soon. It's so hard to watch

> them hurt and not be able to help them. Hot showers 1st thing in

> the morning always help when is stiff. Being fairly new

to

> this I'm afraid I'm not much help but the people that I have

talked

> to here are very helpful. I have found comfort just in knowing

I'm

> not alone and have somewhere to go for advice.

>

> and

>

>

>

> >

> > Hi all,

> > We have been searching the net for info on juvenile arthritis.

We

> > have a 11 year old that the doctor just dx after lab work, OT

> evals,

> > and PT eval. We are being referred to a rhumetoligist that

> > specializes in children. The soonest we can get into that doc is

> > March 30th. In the mean time they prescribed 600mg Ibuprophen

> three

> > times per day. We go to an OT for strengthening exercises, we

are

> > starting pool therapy in the next couple weeks, we tried muscle

> rub

> > ointment and heat packs for pain. It just seems nothing helps.

He

> is

> > so painful in the knees and back. Stiffness in knees, back and

> hands

> > especailly. Its really hard to just watch him suffer each day

just

> > to go to school. When he comes home from school all he wants to

do

> > is sleep.

> > We also have 5 other children the youngest two are ages 7 and 8

> they

> > both have autism, sensory integration dysfunction, cerebral

palsy,

> > and epilepsy. So we are in occupational and physical therapy

> several

> > times per week.

> > Just kind of wondering is there anything else we should be doing

> for

> > our 11 year old? What will the rhumetologist do on the first

> visit?

> > What are the best treatments? They do let him use a computer at

> > school to do his work because its difficult for him to write due

> to

> > poor fine motor skills, is there anything to help make writing

> less

> > painful?

> > Sorry so many questions at once but we are just beginning this

> > journey. Thanks for any info. Christy

> >

>

[Guest guest]

Hi ,

Welcome to the group. I've found the ladies and gentlemen here to be

so kind and helpful. My daughter is also on mtx, plaquinel and

naprosyn. So far we've not seen much if any improvement but we just

added the mtx. Has your daughter had trouble with her tummy due to

the meds? Lily Grace is on her way back to the peds gastro doctor

this week to see if we can help her out.

One of the ladies is working on a group just for the kids so they can

talk to each other. I don't know about your area but there aren't any

kids that we know of in our area with Lily's issue.

I'm so sorry that you are having problems with the school. We are so

blessed to be at a small parochial school who go out of their way to

help her out. When they went on a field trip her teacher took a wagon

for her to ride in and the kids in her class took turns pulling her.

As I said we are so blessed with them however when we first sent to

the peds rheumy they have a social worker on staff to help families

deal with the school aspect. Perhaps there is one available to help

you out as well. If not you may want to consider talking to a local

college that has a social work program. No one is fired up more about

injustice in the world than college students.

I hope that this will help you in some small way. As one of the other

moms said to me () please feel free to write back to complain,

vent or cheer about your latest triumphs. Knowing someone else

understands you makes a world of difference.

Thanks,

Melinda and Lily Grace 8

[Guest guest]

Hello All,

Melinda, 's rhummy put her on Foilc acid and prilosec when

he put her on the mtx. She complains every now and again about her

tummy. I worry about what all these meds are going to do to her in

the long term but I've noticed a diff since he put her on it so

we're taking the here and now 1st.

she's reaching her 3 month mark on it. I'm not sure if I am

explaining it right but her rhummy said however well it works by 3

months is the best it's going to get with it.

she's " graduated " as I call it from every 2 week apts to 4 and this

is her 1st 6 week visit. she's down to blood tests every 3 weeks

from once a week! thankfully she has a awesome phlebotomist Sam the

man!

On a whole, I think 's teacher is the c word (I don't mean

caring or compassionate)! I've had issues with her behavior since

the beginning of school. not just because of my daughter. she

feels the need to tell the kids (what I think are) inappropriate

things like her son is in rehab. do 3rd graders need to know that?

she knows better than everyone and she's done it better, too. the

gym teacher gave a needs to demonstrate more effort on her

report card. i'm guessing she hasn't been informed. I need to get

my stuff together and make an apt with school.

if anyone has any suggestions on what I need to do it'd be greatly

appreciated (a few of you wonderful people have given me great

advise but i'm confused by all the terms. what is an IEP?)

I do have a more pressing question...'s jaw has been

bothering her pretty bad this weekend (it's gotten very cold here).

I'm going to call tomorrow to see what I can do for her but besides

more meds are there any home remedies anyone has had success with?

And if I haven't droned on enough...does anyone else have a problem

with siblings? has a twin sister and she's become

jealous of all the time I spend with going back and forth

to doctors. I'm a single mother and their father isn't involved in

their day to day lives so it's hard to find time to spend with

alone.

speaking of which, they're rolling around on the floor fighting.

guess I should go break it up.

Thanks again to all.

and 9 poly

>

> Hi ,

>

> Welcome to the group. I've found the ladies and gentlemen here to

be

> so kind and helpful. My daughter is also on mtx, plaquinel and

> naprosyn. So far we've not seen much if any improvement but we

just

> added the mtx. Has your daughter had trouble with her tummy due to

> the meds? Lily Grace is on her way back to the peds gastro doctor

> this week to see if we can help her out.

>

> One of the ladies is working on a group just for the kids so they

can

> talk to each other. I don't know about your area but there aren't

any

> kids that we know of in our area with Lily's issue.

>

> I'm so sorry that you are having problems with the school. We are

so

> blessed to be at a small parochial school who go out of their way

to

> help her out. When they went on a field trip her teacher took a

wagon

> for her to ride in and the kids in her class took turns pulling

her.

> As I said we are so blessed with them however when we first sent to

> the peds rheumy they have a social worker on staff to help families

> deal with the school aspect. Perhaps there is one available to

help

> you out as well. If not you may want to consider talking to a

local

> college that has a social work program. No one is fired up more

about

> injustice in the world than college students.

>

> I hope that this will help you in some small way. As one of the

other

> moms said to me () please feel free to write back to complain,

> vent or cheer about your latest triumphs. Knowing someone else

> understands you makes a world of difference.

>

> Thanks,

>

> Melinda and Lily Grace 8

>

[Guest guest]

Hi ,

Lily's grandmother found this thing at Bed Bath and Beyond that we can

heat up in the microwave and wrap around the body parts that are sore.

It looks like a big bag of rice with two handles on the end. It's

worked pretty well so far. Lily has complained periodically about her

jaw as well but not consistently enough for me to start worrying about

that too. Maybe a hot water bottle might work when she's laying down

as well.

We too have had some jealousy issues with Lily's older brother. He

resents that " she gets to take time off school to go to the doctor "

and he just knows " that you're having lots of fun while your there! "

I'm going to try to include him a little more when we go for minor

things so he can see that it's really a lot of waiting, examining and

the interminable labs that get run. We've also tried to do things

with him at home that don't include her. Like when she's feeling low

I'll prop her on the couch with a movie and he and I will get on the

internet and check stuff out. Since he's not allowed to be on the

internet alone that's a real treat for him. We've also been reading a

book together. He'll read some parts of it and then I'll read some in

my spare time and then we talk about it. He feels important because

it's generally a book that she won't read. Perhaps you could take a

few minutes to give your daughter a manicure. We all know how little

girls love to get pretty.

I'm not sure about the IEP but I think it individual educational

program/placement. I do know that public schools have to provide

appropriate education opportunities for all children based on their

abilities. You may want to consult with your schools board of

education. They may not want to do it but they are required to do so.

I hope things start to turn around for you soon.

Melinda and Lily Grace 8

In , " shelbert416 " <michellecoomes@s...> wrote:

>

> Hello All,

>

> Melinda, 's rhummy put her on Foilc acid and prilosec when

> he put her on the mtx. She complains every now and again about her

> tummy. I worry about what all these meds are going to do to her in

> the long term but I've noticed a diff since he put her on it so

> we're taking the here and now 1st.

> she's reaching her 3 month mark on it. I'm not sure if I am

> explaining it right but her rhummy said however well it works by 3

> months is the best it's going to get with it.

> she's " graduated " as I call it from every 2 week apts to 4 and this

> is her 1st 6 week visit. she's down to blood tests every 3 weeks

> from once a week! thankfully she has a awesome phlebotomist Sam the

> man!

>

> On a whole, I think 's teacher is the c word (I don't mean

> caring or compassionate)! I've had issues with her behavior since

> the beginning of school. not just because of my daughter. she

> feels the need to tell the kids (what I think are) inappropriate

> things like her son is in rehab. do 3rd graders need to know that?

> she knows better than everyone and she's done it better, too. the

> gym teacher gave a needs to demonstrate more effort on her

> report card. i'm guessing she hasn't been informed. I need to get

> my stuff together and make an apt with school.

>

> if anyone has any suggestions on what I need to do it'd be greatly

> appreciated (a few of you wonderful people have given me great

> advise but i'm confused by all the terms. what is an IEP?)

>

> I do have a more pressing question...'s jaw has been

> bothering her pretty bad this weekend (it's gotten very cold here).

> I'm going to call tomorrow to see what I can do for her but besides

> more meds are there any home remedies anyone has had success with?

>

> And if I haven't droned on enough...does anyone else have a problem

> with siblings? has a twin sister and she's become

> jealous of all the time I spend with going back and forth

> to doctors. I'm a single mother and their father isn't involved in

> their day to day lives so it's hard to find time to spend with

> alone.

>

> speaking of which, they're rolling around on the floor fighting.

> guess I should go break it up.

>

> Thanks again to all.

>

> and 9 poly

>

> >

> > Hi ,

> >

> > Welcome to the group. I've found the ladies and gentlemen here to

> be

> > so kind and helpful. My daughter is also on mtx, plaquinel and

> > naprosyn. So far we've not seen much if any improvement but we

> just

> > added the mtx. Has your daughter had trouble with her tummy due to

> > the meds? Lily Grace is on her way back to the peds gastro doctor

> > this week to see if we can help her out.

> >

> > One of the ladies is working on a group just for the kids so they

> can

> > talk to each other. I don't know about your area but there aren't

> any

> > kids that we know of in our area with Lily's issue.

> >

> > I'm so sorry that you are having problems with the school. We are

> so

> > blessed to be at a small parochial school who go out of their way

> to

> > help her out. When they went on a field trip her teacher took a

> wagon

> > for her to ride in and the kids in her class took turns pulling

> her.

> > As I said we are so blessed with them however when we first sent to

> > the peds rheumy they have a social worker on staff to help families

> > deal with the school aspect. Perhaps there is one available to

> help

> > you out as well. If not you may want to consider talking to a

> local

> > college that has a social work program. No one is fired up more

> about

> > injustice in the world than college students.

> >

> > I hope that this will help you in some small way. As one of the

> other

> > moms said to me () please feel free to write back to complain,

> > vent or cheer about your latest triumphs. Knowing someone else

> > understands you makes a world of difference.

> >

> > Thanks,

> >

> > Melinda and Lily Grace 8

> >

>

[Guest guest]

In a message dated 12/11/05 7:27:17 PM Central Standard Time,

michellecoomes@... writes:

> ,

Unless is maxed out on the MTX then there is no reason to

believe thats as good as it gets.

started at 7.5mg oral.Each month we uped it 2.5mg.At the 4 month mark

he was at 15mg and it still wasn't doing a thing so we switched to the

injections and bam it worked.He was ultimately raised to the max of 25mg sub q

and

then we added Plaquenil and then Enbrel.

Alot of drugs at high doses but it worked like a charm.We were able to taper

off the pred,then the Motrin,Plaquenil and reduce the MTX back down to his

starting dose of 7.5mg oral.So he just takes 3 little MTX pills and a shot of

Enbrel each week.

It's realy hard getting used to all the meds but once you see them work there

magic it's easier to deal with.

For school you need to contact your vice principal or dept of education and

request a 504 plan.Once you and the Dr. fills out the paper work you will have

a meeting.At the meeting you will discuss all the things needs help

with to keep up in school.Under the law the teachers have to follow all the

recommended acomodations.

If you go to the JRA list homepaige and click on links there is alot of

wonderful info on 504 and IDEA.

We have been dealing with this for 4 1/2 yrs and s sister is just nasty

toward him.It all began when he got sick but has escalated over the years.She

can be outright cruel but when he gets sick she mother hens him.

Your and my Shelby(10 on the 14th) need to vent to each other on the

kids list.Who knows,mayby by having someone to talk to who truely understands

might help them.

Not what you want to hear but the ultimate goal is for no pain,no

stiffness.That means you have to find the right meds at the right doses.It is

possible

and can be achieved but it takes time.You need to advocate for and

question the rheumy,express your wants and concerns.

You have come to the right place to get education and support.I bet by the

next time you see the rheumy you will walk in there with the " what are you going

to do to help my daughter " attitude and when you walk out you will have a game

plan.

Hugs

Becki and 7 systemic

[Guest guest]

hello, my daughter Ciarra is 10 and was diagnosed with systemic onset

polyarticular arthritis 5 years ago. you seem like you are so ahead of things.

having other children with problems really readies you for another one, ya know.

on the first visit, it is mostly questions, and more questions, then they will

see range of motion, any loss of strength, anydeformities. they will talk about

a lot of treatments, mtheotrexate, enbrel, prednisone,etc. all has there draw

backs, but all are very good drugs. my daughter has been on all the drugs for

jra. when my daughter has problems writing with her pencil , they put grips on

them so she is not having to grip so small, if you know what i am saying. the

grips are real good for her.

i know this is a little of subject but when i read your e- mail, i seen a lot

of similarities in my story. i have ciarra with Jra, and i have a 6 year old

son, with mild CP, epilepsy, sensory integration, and autistic tendencies. that

is too weird. he too is in PT, OT, speech, and special ed.

i hope i have helped in a little way. i really just wanted you to know that

you are doing a great job in being there for your kids, and right now, what your

doing seems like it is what your supposed to be doing. hang in there and HAPPY

HOLIDAY!!!!!!

Shell, mom to Ciarra 10yrs old, systemic

meyerfamily8 <meyerfamily8@...> wrote:

Hi all,

We have been searching the net for info on juvenile arthritis. We

have a 11 year old that the doctor just dx after lab work, OT evals,

and PT eval. We are being referred to a rhumetoligist that

specializes in children. The soonest we can get into that doc is

March 30th. In the mean time they prescribed 600mg Ibuprophen three

times per day. We go to an OT for strengthening exercises, we are

starting pool therapy in the next couple weeks, we tried muscle rub

ointment and heat packs for pain. It just seems nothing helps. He is

so painful in the knees and back. Stiffness in knees, back and hands

especailly. Its really hard to just watch him suffer each day just

to go to school. When he comes home from school all he wants to do

is sleep.

We also have 5 other children the youngest two are ages 7 and 8 they

both have autism, sensory integration dysfunction, cerebral palsy,

and epilepsy. So we are in occupational and physical therapy several

times per week.

Just kind of wondering is there anything else we should be doing for

our 11 year old? What will the rhumetologist do on the first visit?

What are the best treatments? They do let him use a computer at

school to do his work because its difficult for him to write due to

poor fine motor skills, is there anything to help make writing less

painful?

Sorry so many questions at once but we are just beginning this

journey. Thanks for any info. Christy

[Guest guest]

Hi , My AIH came on without notice, I just turned yellow and had high

liver levels one month and normal the next month. I was never admitted to

the hospital. I just had no energy, and wanted to sleep all the time. My

hubby had to work to pay the bills so my mother lived with me for one week,

she went home a week, and came back. I could do anything. He will need

alot of support emotionally and physically. It may seem like the end of the

world to him, but he will make it. I will keep you in my prayers.

35yrs old AIH for 1year

-- [ ] New member

Good morning, group. I just joined your ranks and I need to reach out

today for some support. My husband was just diagnosed with autoimmune

hep. His symptoms came on so fast, neither of us knew what hit him.

I am getting ready to go to the hospital today to see him. I would

love to get some feedback from family members, especially spouses, to

find out what I should expect in the upcoming weeks and months. It

would sure help me right now. As much as the hospital staff have been

wonderful and helpful, I am scared. Any information and words of

general encouragement would be GREATLY appreciated. Thanks!

[Guest guest]

Hi I know this is scarey for both of you. I have AIH and have had it

about 10yrs now.

Have they started your husband on prednisone, imuran or any other meds yet?

The prednisone makes us cranky and irritable. Our bodies get hot easier and

some of us gain weight and eat alot. Some of us have trouble with being jittery

from the prednisone and trouble sleeping. It is best to take prednisone before

9 am.

The hardest thing for most of our families is to understand that we tire

easily and even though we " look " good we really don't feel good.

Do you know what stage your husband is in? Has he had a biopsy?

I won't over load you any more. Just ask any questions you have and someone

will help you.

Welcome to the group and tell your husband he can also write to us with

anything he'd like to know or just to share.

This is a very supportive group and while most of us have the disease some on

here are getting info for family members.

Again welcome

the WV hillbilly

[Guest guest]

Welcome a and Oliver - I find it very interesting that Oliver is doing

better now that you have moved to a rural setting. Does he also take

medications? Our Hunter is systemic (stills disease) and was also diagnosed at

age 5

and 1/2 years of age. Please keep us informed on how you all are doing?

Sandi Ken Hunter (7 Systemic)

[Guest guest]

Hi a:

Welcome to this list. You will find many wonderful, knowledgeable and

caring people here.

That is fantastic news that Oliver's health has improved since your move.

My daughter, Caitlin, is now medication free and shows no active signs of

systemic JRA.

Please tell us more about Oliver.

Take care.

Patty

[Guest guest]

a, your home or ville sounds like a prefect kind of place, the

type of setting I've always dreamed of living in since I was a young

child.

My handle here is, Rusty O'Limbs and I am living with jra now since the

age of 13, cronologicly I am 50 but people tell me I am really just a 10

year old in an Old mans body.

Although at the time of my diagnosis I didn't recieve one of the

classification (pauci, poly or systemic) my current rheumy say that my

ealy symptoms sounded classic stills. I also have AS Ankylosing

Spondylitis, as well as have battled with uveitis for many years from

early onset.

I have believed for many years and still feel that, the polutaints and

preservatives today are contributing factor, in many of the chronic

diseases we see affecting children today.

I'm glad your young Oliver is doing well and hope he continues to have

many more good days in the future.

Welcome to this great list of truely wonderful and supportive people!

hplta

Rusty

[Guest guest]

Welcome a,

It sure sounds like you live in paradise over there!! I hope the new

rheumy gets the job done and Oliver does really well.

Stacia and Hunter 9 systemic, uveitis

[Guest guest]

oh dear, .

i feel for you. have you had an ablation, i,e, Radio Frequency Lesioning:

http://www.lowbackpain.com/radiofrequency.shtml ? basically they use radio

waves through a large needle to fry the nerves coming off the spine. i had one

in Oct that gave me almost 3 glorious pain free months. just had another on the

27th of Feb and am now mostly pain free again, not sure for how long though but

have my fingers XX for 4-6 months at least.

i only use Tramadol for pain and i also use a TENS unit for pain. the pill

cycle is horrible and i had some really scary events on hydrocodone and

oxycodone so they are now on my NEVER TAKE list.

have you seen the same doctor for all of this, all of these surgeries??

i stock up on little sweet back angels when i am feeling good. i will send you

some.

Carlene Farmer

New Member

I don't do introductions very well, so bear with me a

little here. My name is . I'm 38 years old

(39 in April). Here is my story.

Failed Back Surgery Syndrome.

That's my diagnosis. Failed Back Surgery Syndrome.

Sounds rather sickening, doesn't it? Almost makes a

person nervous, eh? Couple that with Degenerative Disk

Disease, Sciatica, and Radiculopathy and you have one

heck of a diagnosis started!

That's me in a nutshell. I've had 3 surgeries at level

L5-S1. I also have bulging disks at L4-L5 and L3-L4. I

live with chronic, uncontrollable pain 24/7/365. The

first surgery was December 2000. They did a

laminectomy on L5-S1, left side. The pain came back in

October 2001. I had two ESI's (epidural steroid

injections). No relief whatsoever. The second surgery

was December 2001. They removed additional bone and

disk fragments, in addition to removing scar tissue

that had formed around the left sciatic nerve. The

third surgery was March 2004. They again removed large

pieces of scar tissue that had formed around the left

sciatic nerve.

Here it is.. December 2005. The pain had started again

around December 2004, but it wasn't terrible. It was

something I could live with if I took enough

ibuprofen. I was still able to work and do the grocery

shopping. I was still able to shower without much

trouble. I was still able to do my share of the chores

around the house. I just didn't push myself too hard.

Now... I'm unable to work. Unable to do most chores

around the house. Unable to walk through the grocery

store. I have to use one of those horrible little

motorized carts that go entirely too slowly. My better

half has to help me with showers most days. I can

barely walk. Standing is utterly horrible. Walking is

out of the question most days. Sitting upright isn't

my favorite place to be.

And the pills... oh the pills. They're horrible for a

person's body. Terrible on your liver. Terrible for

your brain. It's all really very frustrating.

__________________________________________________

[Guest guest]

,

and have you checked on the laser spine procedure? that might be just right for

you since you have so many issues with your back. please keep us posted.

Carlene

Re: New Member

oh dear, .

i feel for you. have you had an ablation, i,e, Radio Frequency Lesioning:

http://www.lowbackpain.com/radiofrequency.shtml ? basically they use radio

waves through a large needle to fry the nerves coming off the spine. i had one

in Oct that gave me almost 3 glorious pain free months. just had another on the

27th of Feb and am now mostly pain free again, not sure for how long though but

have my fingers XX for 4-6 months at least.

i only use Tramadol for pain and i also use a TENS unit for pain. the pill

cycle is horrible and i had some really scary events on hydrocodone and

oxycodone so they are now on my NEVER TAKE list.

have you seen the same doctor for all of this, all of these surgeries??

i stock up on little sweet back angels when i am feeling good. i will send you

some.

Carlene Farmer

[Guest guest]

Hi , I'm nice to meet you. I had a spinal fusion at L4,L5 and S1

six months ago. I'm still struggling to get over it and now seem to be having

further problems with the disks in my neck. It never ends does it. Still there

is some very good information here.

Best wishes

Schoen <mspoohtao@...> wrote:

I don't do introductions very well, so bear with me a

little here. My name is . I'm 38 years old

(39 in April). Here is my story.

Failed Back Surgery Syndrome.

That's my diagnosis. Failed Back Surgery Syndrome.

Sounds rather sickening, doesn't it? Almost makes a

person nervous, eh? Couple that with Degenerative Disk

Disease, Sciatica, and Radiculopathy and you have one

heck of a diagnosis started!

That's me in a nutshell. I've had 3 surgeries at level

L5-S1. I also have bulging disks at L4-L5 and L3-L4. I

live with chronic, uncontrollable pain 24/7/365. The

first surgery was December 2000. They did a

laminectomy on L5-S1, left side. The pain came back in

October 2001. I had two ESI's (epidural steroid

injections). No relief whatsoever. The second surgery

was December 2001. They removed additional bone and

disk fragments, in addition to removing scar tissue

that had formed around the left sciatic nerve. The

third surgery was March 2004. They again removed large

pieces of scar tissue that had formed around the left

sciatic nerve.

Here it is.. December 2005. The pain had started again

around December 2004, but it wasn't terrible. It was

something I could live with if I took enough

ibuprofen. I was still able to work and do the grocery

shopping. I was still able to shower without much

trouble. I was still able to do my share of the chores

around the house. I just didn't push myself too hard.

Now... I'm unable to work. Unable to do most chores

around the house. Unable to walk through the grocery

store. I have to use one of those horrible little

motorized carts that go entirely too slowly. My better

half has to help me with showers most days. I can

barely walk. Standing is utterly horrible. Walking is

out of the question most days. Sitting upright isn't

my favorite place to be.

And the pills... oh the pills. They're horrible for a

person's body. Terrible on your liver. Terrible for

your brain. It's all really very frustrating.

__________________________________________________