New to the List

March 22, 2000

In a message dated 3/22/00 5:04:38 PM Eastern Standard Time,

Broyles@... writes:

<< walks around

the rest of the day with her pants undone or something >>

My daughter Holly is 6 also and does the same thing at school, t home she

asks for help. I resorted to elastic waist pants and dresses. Dresses were

the easy part she loves dresses. AJ

March 23, 2000

wouldn't walk around that way when she couldn't do up her

pants--she was afraid someone would notice! She would just hold it ALL

day (this was last year in 1st grade), which is both uncomfortable and

unhealthy. We also resorted to elastic waist pants, but not every day.

couldn't bear to give up wearing her favorite clothes!! We also

spoke to the classroom teacher and the school nurse. The teacher

frequently had go with her aide to the copy machine or other

errands---it gave a chance to move around more. They started also

using that as an opportunity to send her to the restroom. They let her

use the staff restroom since she didn't want other kids to know she

needed help. The nurse did the same thing when would go get her

meds. By the way, did eventually confide in one of her friends

that her arthritis was making it difficult for her to button and snap.

Alissa then suggested that they be " bathroom buddies " ! It worked very

well!! Thankfully 's fingers have improved, so while she still

needs help some mornings, she is able to take care of herself at school.

Liz

ajaomom@... wrote:

>

> From: ajaomom@...

>

> In a message dated 3/22/00 5:04:38 PM Eastern Standard Time,

> Broyles@... writes:

>

> << walks around

> the rest of the day with her pants undone or something >>

> My daughter Holly is 6 also and does the same thing at school, t home she

> asks for help. I resorted to elastic waist pants and dresses. Dresses were

> the easy part she loves dresses. AJ

>

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> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

March 24, 2000

Hi,

Josh has certain clothing that he wears particularly on those days when

he is having a rough time. When his fingers/wrists are having some

involvement he too prefers elastic waist or velcro enclosure surf

shorts, instead of shorts or pants with buttons and zippers. Same thing

with shirts. Instead of a button-down shirt, he'll wear a pullover or

t-shirt. He occassionally needs some help getting a shirt on and off, if

his elbows or wrists are real sore, but at this stage he's pretty

independent.

The idea about having a bathroom buddy is a good one!

~Georgina

wrote:

> wouldn't walk around that way when she couldn't do up her

> pants--she was afraid someone would notice! She would just hold it ALL

> day (this was last year in 1st grade), which is both uncomfortable and

> unhealthy. We also resorted to elastic waist pants, but not every day.

> couldn't bear to give up wearing her favorite clothes!! We also

> spoke to the classroom teacher and the school nurse. The teacher

> frequently had go with her aide to the copy machine or other

> errands---it gave a chance to move around more. They started also

> using that as an opportunity to send her to the restroom. They let her

> use the staff restroom since she didn't want other kids to know she

> needed help. The nurse did the same thing when would go get her

> meds. By the way, did eventually confide in one of her friends

> that her arthritis was making it difficult for her to button and snap.

> Alissa then suggested that they be " bathroom buddies " ! It worked very

> well!! Thankfully 's fingers have improved, so while she still

> needs help some mornings, she is able to take care of herself at school.

> Liz

>

> ajaomom@... wrote:

> > In a message dated 3/22/00 5:04:38 PM Eastern Standard Time,

> > Broyles@... writes:

> >

> > << walks around

> > the rest of the day with her pants undone or something >>

> > My daughter Holly is 6 also and does the same thing at school, t home she

> > asks for help. I resorted to elastic waist pants and dresses. Dresses were

> > the easy part she loves dresses. AJ

March 25, 2000

new to the list

> From: " KRISTEN BROYLES " <Broyles@...>

>

,

My daughter, Paxton is also 6 and is in Kindergarten. Paxton, like your

daughter will not ask for help at school. We had an IEP meeting with her

teacher, principal and special services director before school started this

year to discuss the type of things she would need while in school. Paxton

has an aide that is with her all day to help her with things even when she

won't ask. I have also found it very helpful to buy pants with large hook

closures or just elastic waists. Did you have a meeting like this. As a

child with JRA, your daughter is covered by the Americans with Disabilities

Act and the school must provide you with the things and help that she will

need in school at no cost to you. Paxton has a cot for nap time, cushions

for the chair and floor and the aide. Call the school and they should be

able to tell you who to contact at the school board. It will probably be

someone with the special ed dept. They also provide services such as

physical therapy at the school if the child needs it. I hope this helps

some. I'm pretty new to the jra dx. Paxton was dx. last May. Good luck

and keep your chin up! You will find lots of support and great info at this

site.

Tracey

> my daughter, Kourtney, was diagnosed with jra 4 years ago. she is

> now 6 years old and attending kindergarten. it has been very hard

> the last few years dealing with this illness. she has had 12

> surgeries up to date. most have been g-tube placing and problems

> with the g-tube site not healing correctly. she only weighs 35 lbs.

> and is the average height of a 3-4 year old(40inches). she was

> diagnosed with polyarticular jra when she was 2. it has affected all

> joints in her body, including her jaw. she also has an older sister

> who is 8 years old. thank goodness she is in pretty good health but

> i do have a different problem with her. she is extremely jealous of

> the attention her sister gets because of the arthritis and also

> suffers from depression. i have been looking for some kind of

> support for the last 4 years hoping to talk to someone who has dealt

> with the same issues as i. people who don't know Kourtney very well

> or don't know any children with this illness listen very well but

> they don't have any advice and i don't get a lot of support. i have

> concerns about Kourtney at school. i don't know any other parents

> who have kids with jra and what to expect when it comes to school.

> she does have trouble with her fine motor as well as large motor

> skills which worries me about her playing on the slide and other

> playground equipment with very little strength in her hands to hold

> herself. also, she has trouble going to the restroom by herself but

> she won't ask for help. instead, she wets herself or walks around

> the rest of the day with her pants undone or something. if anyone

> out there has any advice for me please write. it feels so good to

> get this off my chest and know that the people who will read this

> know how i feel. thank you for your time.

>

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>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

June 10, 2000

Hi,

Most discussion on this list is now at http://ithyroid.com a new bulletin

board.

Your best source for standard medical assessment of TED and to find many,

many people who've had or are contemplating the surgeries you're talking

about it the National Graves Disease Foundation Bulletin Board. You can get

there by going to the NGDF home page and clicking under bulletin board:

www.ngdf.org

new to the list

> Hi all,

> Let me introduce myself.

>

> (Idont know why I didnt look up for a list like this earlier)

>

> I am 37, live in Sydney Australia.

> Was diagnosed with hyperth., in Dec 96.

> (self-diagnosed actually).

>

> found I had swollen glands on either side of the neck and did some

> research and everything pointed to either throat cancer or hyperthro.,

> went to the doc and asked for blood tests and was confirmed with

> graves disease.

>

> Mine is the agrressive version. Have had two rai treatments

> 12 months apart, each reduced the reading considerably only to have

> it return once again in a high reading.

>

> I have become used to the problem with the thyroid itself. The

> problems with hair loss at the top of the head and TED is the area

> I would like help in. I have discussed the TED with an

> opthalmologist

> and eye surgeon. The risk for me to surgically correct the proposis

> (spell?) of the eyes is 1% for vision loss and 10% for double vision.

> If both risks were at 1% then I would have had the surgery for

> vanity's sake.

>

> Has anyone successfully treated their eyes and what about hair loss?

> I would be grateful for any information.

> Many thanks and kind regards to all,

> Ersilia Vitale

>

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June 11, 2000

In a message dated 6/9/00 6:00:19 PM Pacific Daylight Time,

ccdream@... writes:

<< Hi all,

Let me introduce myself. I am 37, live in Sydney Australia. Was diagnosed

with hyperT, in DEC 96, graves disease.

Mine is the aggressive version. Have had two RAI treatments 12 months apart,

each reduced the reading considerably only to have it return once again in a

high reading.

I have become used to the problem with the thyroid itself. The problems with

hair loss at the top of the head and TED is the area I would like help in.

Has anyone successfully treated their eyes and what about hair loss?

Ersilia Vitale >>

Hi Ersilia,

Welcome to the group. Well, it sounds like your thyroid has survived

despite RAI. I consider that a good sign that either you didn't get too much

radiation or your body is really strong. I think if you follow the nutrition

suggestions are iThyroid.com you should be able to get your thyroid normal.

My present understanding of TED is that cadmium toxicity may be the most

important factor. Go to the cadmium pages at iThyroid and make sure that you

eliminate cadmium sources from your life as much as possible. This may

include limiting the intake of green leafy vegetables and carrots and

avoiding other cadmium sources such as smog and any foods that have come into

contact with galvanized metal such as fruit dried on chicken wire and dairy

products (galvanized milk cans).

Zinc, copper, and selenium are the three critical minerals for countering

cadmium. Kelp and iodine may be important. Colloidal silver and gold may be

important. Metallothionein (based on the amino acid cysteine) is the protein

which transports cadmium (thus keeping it under control). Cysteine, vitamin

B6, and biotin may be important in metallothionein formation and therefore

important for those with TED.

The standard treatments for TED (radiation and orbital decompression

surgery) are not good alternatives. Patience may be a virtue as many people

with TED report that it goes away with time (possibly from dietary and

lifestyle changes). I'm continuing to do research on this important area of

thyroid disease.

August 7, 2000

Hi Charisa,

All of us here know how you feel, we have been there. It does get

easier with more understanding. Do you know which type of JRA

Hailey has? I have a 13 year old son who has had polyarticular JRA

for 5 years. He functions just fine, plays sports, has tons of friends,

lots of good things. The hard part is that you are always dealing with

it. Ask any questions you may have, there are lots of knowledgeable

people here. I had to respond, I have a 17 year old daughter named

Hailey. It is such an Idaho name, where do you live? (we are in Boise)

Take care, Jana

August 7, 2000

Hi Charisa,

My daughter Kelsey, age 3, was diagnosed with polyarticular jra in April.

She had symptoms (beginning in her right knee) for a year before things got

bad and started affecting other joints. Her knees, ankles, toes, fingers,

and wrists are affected. Right now her wrists are the only problem area, and

its pretty minimal. She is taking Naprosyn and going to physical therapy

twice a week. I know how you feel about being scared, I still worry all the

time even though Kelsey is doing really well now. I think the hardest part

for me has been watching her play with her cousins, ages 2 & 3, and her

sister, age 8, and not be able to keep up with them. She can't run as fast,

can't jump, and gets tired a lot faster. It doesn't seem to keep her down...

she's pretty active.

Since April when Kelsey was diagnosed and started treatments, she has

improved 95%. We are very impressed with how well she's done. Each child is

different, but I've heard more good stories than bad! There are parents in

this group with children having all types of jra, so there is always plenty

of support here! Welcome to the group,

Take care,

August 8, 2000

,

Thanks for the welcome and the sharing, it so nice to have found others! My

Hailey is taking Naprosyn too, we are on a wait list to receive PT, we have

just moved to a new city and that means starting over on all the services

again :0( But because Hailey has had PT before for weak ankels (before we

knew about the JRA) she should not have to wait too long. I am a student as

well as a mom, LOL so I am hoping to get her daycare worker and the other

people who will be working with Hailey like PT and Speech Therapy and

Occupational Therapy to work with me at the day care with her! Could be a

year full of juggling! But we will survive. Just wanted to say thanks. I

am glad to read that your little one is doing so well! Thats so

encouraging!

Charisa mom2 Hailey PRS (Pierre Robin Sequence) and JRA 2 1/2 yrs and very

cute!

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

August 8, 2000

Charisa

Welcome to the group. I haven't been on long but have found answers to alot

of questions no one else could answer. I too have a daughter with other

special needs as well. She has had cp since birth. So when she was 2 1/2

and having a hard time walking her ped dr said it was from the cp. A few

months later after alot of persistence she was diagnosed with JRA. I too felt

guilty. Welcome once again and I know you will find alot of support here.

Charlene (CHYCHYS MOM)

August 8, 2000

Charisa,

I don't know where you are from, but here the public schools have a preschool

program beginning at age 3 for special needs children. The preschool kids at

my other daughter's elementary school receive their therapies at the school.

We have considered this for Kelsey, but I'm home full time so she can go to

preschool at our church and I can get her back and forth to therapy. Best of

luck to you and Hailey, I hope things only get better for you all.

August 20, 2000

Hi Charisa,

Your letter was so touching. Still sometimes brings tears to my eyes,

when I read these kinds of stories. Yes, in time you will come to accept

this better. And you're right. There are lots of worse things that it

could have been. But when it's our child, who is feeling pain and having

their quality of life affected because of this pain or the other

symptoms, we have every right to react strongly. That's a perfectly

normal emotional response to this kind of news. JRA is a long term

chronic illness which is potentially disabling and for which there is no

known cure. That's pretty scary.

The good news is that it is treatable. The prognosis of many children

who are diagnosed with JRA these days is often more positive than just

twenty years ago. They're starting to understand this illness better

than they used to. With the advent of some of the newer drugs, which are

often safer and better tolerated, and perhaps more effective, our

children have a good chance of having their arthritis symptoms

controlled without having permanent destruction of their joints. And

even then, joint replacement surgery techniques and materials have

undergone improvements, too. The picture doesn't seem quite so bleak as

it used to. I'm reminded of that when I peek into outdated medical and

nursing texts and read their older descriptions of JRA and it's

treatment and course.

Still, when you see your daughter having hard days and not being able to

play as she might have without JRA, it is saddening. My son spent many

days feeling unwell, having high fevers and lots of fatigue, and not

being able to move with ease. Some days he was too sick to have friends

over. Other days, though they knew he wouldn't be going out to join

them, they wanted to come inside to see him and spend time together,

doing less active things and still having fun. Reading a joke book and

laughing, making paper airplanes to fly in his room, listening to music

together, etc.

Nowadays he's often outside with the rest of the neighborhood children,

and often playing just as actively as they do, but there were many days

in the past when it seemed like he would never feel well enough again to

join them again. He is one of the most popular kids in our neighborhood,

despite having JRA. His friends never forgot about him. Never left him

out of the group's activities because of his illness. Sometimes they

persuaded him to sit outside and just watch the game. They worried a

little when they didn't get to see him too much, were concerned. The way

real friends behave when a friend is sick.

I hope your daughter starts having some improvements soon. If she isn't

able to move around real well, maybe you should ask the doctors about

treating her with more aggressive meds? What is she taking for the JRA?

Take care,

Georgina

charisa hill wrote:

>

> Hello everyone!

>

> My name is Charisa, and I have 2 children my oldest is 5 and my

> youngest is 2 1/2 yrs, Hailey the little one, has another rare

> medical condition which I think has made me not notice all the signs

> of the JRA that she has had, because several of them are the same.

> Regardless, at our last visit to childrens hospital I asked the

> geneticist and pediatrician about the joint pain she is complaining

> of, she has complained of sore knees and a sore back and sore arms

> for several months, but I never realized that a 2 year old could tell

> me, (GUILT!!)and after several blood tests, xrays and physical exams,

> I was told that she has JRA in several joints, her hips, back, knees

> and arms are the worst right now. (from what we can tell) I was

> overwhelmed by this diagnoses, not that it is the worst thing in the

> whole world, I know that there are much worse things, but she is my

> baby and I know that she has and will suffer for many years to come.

> I breaks my heart to see her sitting playing alone while her sister

> or other friends are all running and jumping. I just want her to be

> happy too. Since this is not our first diagnoses, I do know that in

> time I will accept it better but for now I am scared for now. I am

> interested in hearing other stories and getting and giving support to

> other parents like myself. I look forward to getting to know you and

> your families.

>

> Charisa mom2 Hailey 2 1/2 PRS and JRA and 5

December 31, 2000

Hi Teri,

When your TSH (thyroid stimulating hormone) is high it means your body is

working too hard to try to produce thyroid hormone. So the higher the TSH

number the lower your thyroid function. When your TSH number is very low, it

means your thyroid isn't being stimulated because it's already pumping out

too much thyroid hormone creating hyperthyroidism. The symptoms can be very

similar for both hypos and hypers, although hypers can experience life

threatening thyroid storms. Hypos seem to experience a slower, more drawn out

form of torture (hah!). Many hypers experience spontaneous remission, or can

achieve remission after treatment with antithyroid drugs. Most docs feel that

hypos are hypo for life, but I know of cases where this hasn't been the case.

Anyway, check out ithyroid.com for the best information you can possibly find

on recovering from thyroid disorders.

Good luck,

Penny

June 22, 2008

Hello Ruth-

Nausea is very common with MTX. Hopefully it will start to help her soon.

THey can give her meds to counteract the nausea if its intollerable and its

possible that she might tollerate the injectable MTX better. With the

seriousness and progression of her disease, she might need to be on a

biologic.

Hopefully she will have a different response soon. I would think that he

will want to try a different approach if she doesnt feel better soon. I

would stay on him about this. Do you know if she is RF positive or not? And

her other labs.. how bad they are? She could need more aggressive treatment

to prevent further damage.

Once the disease is under better control she will probably start feeling

loads better emotionally as well. It is VERY hard to learn to ask for help

and be okay accepting it.

Maybe she needs to see a counselor. Sometimes it helps. I know that at

around her age, I went through that. I was very angry that I had not

outgrown this and was going to the doctor so much and in so much pain. I was

feeling very rebellious and distrustful of anything my doctors said. My

rheumatologist had one of the therapist drop in on me once at an appointment

which was not really the way to go but it had its positive benefits in the

long run. Whatever the case, having therapy did help me some as well as

getting involved with the Arthritis foundation and meeting others with the

disease helped a lot because I felt I could trust others with it than some

medical people without.

Anyways, it's a hard time and Im sure it's very frustrating for her and you.

I'm glad you found this place.. it's very supportive here.

Issadora (age 30)

On Sat, Jun 21, 2008 at 9:29 PM, Ruth <8thbook@...> wrote:

> My name is Ruth and I am new to the list. My 17 year old daughter

> started on mtx 3 weeks ago. she has taken 3 doses and is to take the

> 4th tonight. Is it normal for her to be so tired and nauseated for 3-

> 4 days? Her Ped Rheumy says that she should be getting better with

> side effects not as bad but it has not seemed to change yet. She had

> a 'probable' dx when she was 9 years old but the Rheumy was not a Ped

> Rheumy since there was none near us. He did not put her on anything

> except for Naproxen as needed. She received an imunization last

> summer (2007) and by the end of the year she was having so much

> difficulty with joint swelling and pain that we found a Ped Rheumy 2

> hours away. When we went to see him he said that she should have been

> on meds a long time ago and that she is in so much pain now because

> the disease has progressed. She is having a very hard time dealing

> with how debilitating this whole thing has become so quickly. She has

> always been very active, last year she was a lifeguard and coached

> synchronized swimming. In fact she has raised service dogs for people

> with disabilities. She can not seem to accept any help from anyone

> and is making decisions that are totaly not in her character. I don't

> know what to do or say to help her. It seems everything I say is the

> wrong thing. Any ideas? She is the oldest of 7, 4 natural and 3

> adopted. One of her natural brothers has type 1 diabetes and her

> sister has celiac disease, I find it ironic that 3 of our natural

> children all have autoimmune diseases. I am at a loss as to what to

> do to help her, when her siblings were dx'd she was so helpful to

> them in helping them deal with their illnesses. Sorry I am rambling,

> I just want to help her, I love her so much and it hurts me so much

> to see her suffering like this. We seem to be fighting about almost

> everything and I hate it. We have always had such a good relationship

> but it doesn't seem like things will ever get better. Thanks for any

> help. Ruth

>

--

" Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI-

Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is

within me awaiting to find a space to find it's flow...

June 23, 2008

Ruth,

It really varies on the side effects---some have few, some have many. My

daughter would have nausea and vomiting before I could even draw up the MTX and

so we switched back to the oral. She does take something for her stomach too.

Does your daughter take folic acid with the MTX? This can significantly help

with side effects. My daughter used to take Zantac and now takes something else,

that at after 1:30 in the morning I can not think of. Sorry!

As for the anger and such--sadly, this can be so normal, especially for an

active teenager. And as said, pain can attribute to it too. Do they have

your daughter taking anything else right now or just the methotrexate (MTX)? A

tapering dose of prednisone may help. Also some type of NSAID such as Celebrex,

Ibuprofen etc. My daughter takes regular Celebrex and notices the difference

when she forgets. She also takes Ultram for the pain in between. She also had

severe anger, depression issues (she used to dance en pointe with a travelling

dance group) and saw a therapist who sadly did nothing for her. She takes an

antidepressant that again, sadly I can not think of due to lack of sleep, that

has helped her mood to stabilize. There are times that she still is over the top

and those times I encourage her to take a pain pill, rest, etc. She does have an

anti-anxiety med also.

I don't mean to sound discouraging but to let you know that this can be so

normal behavior. And helping others through their issues is one thing--dealing

with it in yourself is another sadly. But my daughter is a full time college

student who will finish her last quarter this summer and then her internship and

she will graduate in December with her Bachelor's degree. So things do get

better--it takes a bit to tweak the meds and such. I will be out of town until

Saturday night--as in tent camping with no electronics--so if you have any

questions please ask but I won't be able to answer until next week some time

because I will be catching up on lost sleep!!

I would call your rheumatologist and let them know how your daughter is doing

and ask for suggestions. Keep in touch with the group and ask away. There are

lots of great and helpful people here.

e, mom to " joe " 21 poly/lupus AKA rheupus

From: Ruth <8thbook@...>

Subject: New to the list

Date: Saturday, June 21, 2008, 9:29 PM

My name is Ruth and I am new to the list. My 17 year old daughter

started on mtx 3 weeks ago. she has taken 3 doses and is to take the

4th tonight. Is it normal for her to be so tired and nauseated for 3-

4 days? Her Ped Rheumy says that she should be getting better with

side effects not as bad but it has not seemed to change yet. She had

a 'probable' dx when she was 9 years old but the Rheumy was not a Ped

Rheumy since there was none near us. He did not put her on anything

except for Naproxen as needed. She received an imunization last

summer (2007) and by the end of the year she was having so much

difficulty with joint swelling and pain that we found a Ped Rheumy 2

hours away. When we went to see him he said that she should have been

on meds a long time ago and that she is in so much pain now because

the disease has progressed. She is having a very hard time dealing

with how debilitating this whole thing has become so quickly. She has

always been very active, last year she was a lifeguard and coached

synchronized swimming. In fact she has raised service dogs for people

with disabilities. She can not seem to accept any help from anyone

and is making decisions that are totaly not in her character. I don't

know what to do or say to help her. It seems everything I say is the

wrong thing. Any ideas? She is the oldest of 7, 4 natural and 3

adopted. One of her natural brothers has type 1 diabetes and her

sister has celiac disease, I find it ironic that 3 of our natural

children all have autoimmune diseases. I am at a loss as to what to

do to help her, when her siblings were dx'd she was so helpful to

them in helping them deal with their illnesses. Sorry I am rambling,

I just want to help her, I love her so much and it hurts me so much

to see her suffering like this. We seem to be fighting about almost

everything and I hate it. We have always had such a good relationship

but it doesn't seem like things will ever get better. Thanks for any

help. Ruth

June 25, 2008

Thank you all for the encouragement and suggestions. Tricia took her

3rd dose of MTX on Saturday and for the first time she only felt sick

for one day. Although she does feel dizzy and somewhat 'foggy'. She

seemed to be doing better then she got sick last night with strep

throat. She takes prednisone, Zantac, Folic Acid, MTX, Omega 3 fish

oil and Calcium - Magnesium all are oral. Since she is on Prednisone

and MTX they are treating her agressively with antibiotics and have

her stop the pred for a few days until the infection is under

control. We are all trying to come to grips with the whole thing. She

is very interested in talking to others that have walked down this

same road. I think it will really help. Does anyone live in the

Phoenix Arizona area and if so do you know of any support groups. She

sees Dr's at Phoenix Childrens and they were not aware of any groups

currently meeting. Once again THANK YOU all for the encouragement.

Ruth

>

> From: Ruth <8thbook@...>

> Subject: New to the list

>

> Date: Saturday, June 21, 2008, 9:29 PM

>

> My name is Ruth and I am new to the list. My 17 year old daughter

> started on mtx 3 weeks ago. she has taken 3 doses and is to take

the

> 4th tonight. Is it normal for her to be so tired and nauseated for

3-

> 4 days? Her Ped Rheumy says that she should be getting better with

> side effects not as bad but it has not seemed to change yet. She

had

> a 'probable' dx when she was 9 years old but the Rheumy was not a

Ped

> Rheumy since there was none near us. He did not put her on anything

> except for Naproxen as needed. She received an imunization last

> summer (2007) and by the end of the year she was having so much

> difficulty with joint swelling and pain that we found a Ped Rheumy

2

> hours away. When we went to see him he said that she should have

been

> on meds a long time ago and that she is in so much pain now because

> the disease has progressed. She is having a very hard time dealing

> with how debilitating this whole thing has become so quickly. She

has

> always been very active, last year she was a lifeguard and coached

> synchronized swimming. In fact she has raised service dogs for

people

> with disabilities. She can not seem to accept any help from anyone

> and is making decisions that are totaly not in her character. I

don't

> know what to do or say to help her. It seems everything I say is

the

> wrong thing. Any ideas? She is the oldest of 7, 4 natural and 3

> adopted. One of her natural brothers has type 1 diabetes and her

> sister has celiac disease, I find it ironic that 3 of our natural

> children all have autoimmune diseases. I am at a loss as to what to

> do to help her, when her siblings were dx'd she was so helpful to

> them in helping them deal with their illnesses. Sorry I am

rambling,

> I just want to help her, I love her so much and it hurts me so much

> to see her suffering like this. We seem to be fighting about almost

> everything and I hate it. We have always had such a good

relationship

> but it doesn't seem like things will ever get better. Thanks for

any

> help. Ruth

>

June 27, 2008

Ruth,

Aundrea sees Dr. Shishov at Phoenix Childrens.

The arthritis foundation has a few events going on this

summer. Do you know through the arthritis foundation?

July 31st they have something at As you Wish Pottery and on

Sept. 27th there is a Salute to Summers event in sdale.

email me offlist if you would like me to send you the contact

information.

(Aundrea 12 fibromyalgia)-

-- In , " Ruth " <8thbook@...> wrote:

>

> Thank you all for the encouragement and suggestions. Tricia took

her

> 3rd dose of MTX on Saturday and for the first time she only felt

sick

> for one day. Although she does feel dizzy and somewhat 'foggy'. She

> seemed to be doing better then she got sick last night with strep

> throat. She takes prednisone, Zantac, Folic Acid, MTX, Omega 3 fish

> oil and Calcium - Magnesium all are oral. Since she is on

Prednisone

> and MTX they are treating her agressively with antibiotics and have

> her stop the pred for a few days until the infection is under

> control. We are all trying to come to grips with the whole thing.

She

> is very interested in talking to others that have walked down this

> same road. I think it will really help. Does anyone live in the

> Phoenix Arizona area and if so do you know of any support groups.

She

> sees Dr's at Phoenix Childrens and they were not aware of any

groups

> currently meeting. Once again THANK YOU all for the encouragement.

>

> Ruth

>

> >

> > From: Ruth <8thbook@>

> > Subject: New to the list

> >

> > Date: Saturday, June 21, 2008, 9:29 PM

> >

> > My name is Ruth and I am new to the list. My 17 year old daughter

> > started on mtx 3 weeks ago. she has taken 3 doses and is to take

> the

> > 4th tonight. Is it normal for her to be so tired and nauseated

for

> 3-

> > 4 days? Her Ped Rheumy says that she should be getting better

with

> > side effects not as bad but it has not seemed to change yet. She

> had

> > a 'probable' dx when she was 9 years old but the Rheumy was not a

> Ped

> > Rheumy since there was none near us. He did not put her on

anything

> > except for Naproxen as needed. She received an imunization last

> > summer (2007) and by the end of the year she was having so much

> > difficulty with joint swelling and pain that we found a Ped

Rheumy

> 2

> > hours away. When we went to see him he said that she should have

> been

> > on meds a long time ago and that she is in so much pain now

because

> > the disease has progressed. She is having a very hard time

dealing

> > with how debilitating this whole thing has become so quickly. She

> has

> > always been very active, last year she was a lifeguard and

coached

> > synchronized swimming. In fact she has raised service dogs for

> people

> > with disabilities. She can not seem to accept any help from

anyone

> > and is making decisions that are totaly not in her character. I

> don't

> > know what to do or say to help her. It seems everything I say is

> the

> > wrong thing. Any ideas? She is the oldest of 7, 4 natural and 3

> > adopted. One of her natural brothers has type 1 diabetes and her

> > sister has celiac disease, I find it ironic that 3 of our natural

> > children all have autoimmune diseases. I am at a loss as to what

to

> > do to help her, when her siblings were dx'd she was so helpful to

> > them in helping them deal with their illnesses. Sorry I am

> rambling,

> > I just want to help her, I love her so much and it hurts me so

much

> > to see her suffering like this. We seem to be fighting about

almost

> > everything and I hate it. We have always had such a good

> relationship

> > but it doesn't seem like things will ever get better. Thanks for

> any

> > help. Ruth

> >

January 5, 2009

Hi I am new am my name is also.. I am from Mo. I have had degenerated

disk's in my neck and fusion 5 years ago, the last 3 months the pain in the neck

and down my left arm has started all over again. I have had 3 epidural's with

no change and I have an appt tomorrow for an EMG.. Has anyone experienced this..

The pain in my arm is so bad I can't sleep at night...

Thanks for letting me be a member of the group..

_________________________________________________________________

It’s the same Hotmail®. If by “same” you mean up to 70% faster.

http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_broad1_12200\

8

January 5, 2009

,

What part of MO are you in? I have had several EMGs and they are not

pleasant. If you have any pain medicine you might want to take one

prior.......if you can take a friend or family member with you it might

help. The worst part of the test and the part they don't always do....is

where the place a needle in the muscle and and see how it conducts thru the

muscle. Its not pleasant but its not the worst experience in the world.

Deb RN

New to the List

Hi I am new am my name is also.. I am from Mo. I have had degenerated

disk's in my neck and fusion 5 years ago, the last 3 months the pain in the

neck and down my left arm has started all over again. I have had 3

epidural's with no change and I have an appt tomorrow for an EMG.. Has

anyone experienced this.. The pain in my arm is so bad I can't sleep at

night...

Thanks for letting me be a member of the group..

_________________________________________________________________

It's the same HotmailR. If by " same " you mean up to 70% faster.

http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_broad1_1

22008

January 5, 2009

The EMG about did me in.

Sorry.

I see no point in lieing...

~~~~~~~~~~~~~~~~

>

> Hi I am new am my name is also.. I am from Mo. I have had

degenerated disk's in my neck and fusion 5 years ago, the last 3

months the pain in the neck and down my left arm has started all over

again. I have had 3 epidural's with no change and I have an appt

tomorrow for an EMG.. Has anyone experienced this.. The pain in my

arm is so bad I can't sleep at night...

>

> Thanks for letting me be a member of the group..

> _________________________________________________________________

> It's the same Hotmail®. If by " same " you mean up to 70% faster.

> http://windowslive.com/online/hotmail?

ocid=TXT_TAGLM_WL_hotmail_acq_broad1_122008

>

January 5, 2009

I am in the kansas city area.

spinal problems@...: i_ownaberner@...:

Mon, 5 Jan 2009 20:28:24 -0600Subject: RE: New to the

List

,What part of MO are you in? I have had several EMGs and they are

notpleasant. If you have any pain medicine you might want to take

oneprior.......if you can take a friend or family member with you it mighthelp.

The worst part of the test and the part they don't always do....iswhere the

place a needle in the muscle and and see how it conducts thru themuscle. Its not

pleasant but its not the worst experience in the world.Deb RN-----Original

Message-----From:

spinal problems [mailto:spinal problems@yah\

oogroups.com] On Behalf Of Sent: Monday, January 05, 2009 6:26

PMspinal problems@...: [spinal Disorders

Support] New to the ListHi I am new am my name is also.. I am from Mo. I

have had degenerateddisk's in my neck and fusion 5 years ago, the last 3 months

the pain in theneck and down my left arm has started all over again. I have had

3epidural's with no change and I have an appt tomorrow for an EMG.. Hasanyone

experienced this.. The pain in my arm is so bad I can't sleep atnight...Thanks

for letting me be a member of the

group..__________________________________________________________It's the same

HotmailR. If by " same " you mean up to 70%

faster.http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_broad\

1_122008[Non-text portions of this message have been

removed]------------------------------------

January 5, 2009

Hey my name is I am also new I have the left arm pain all the time

thanks to 2 herniated disks in my C spine. I have found nothing that really

helps the pain other than wearing carpel tunnel braces when I sleep, but the

pain is always there. If you find any relief please share your secret.. Oh I

lied I do have one trick that will give me around 30 min to an hour of no pain

which is enough to let the pain & sleeping pills kick in and knock me out. I

use Stopain Pain Relief Roll-on, in my house alone 3 out of 4 swear by it. Me,

my mother in law ( Fibro and old age with a hard life), and my father in law(

List of disorders to long to remember), my husband does not think it works but

he never thinks anything works and will not go to the doctors. I get it at

Wal-Mart I have also seen it at the major pharmacies. Good luck, I understand

your pain so well, and the worst part is how it just hits you like a Mac Truck

from out of no where.

If you would like to chat you can hit me back at this e-mail.

May peace fill your days,

From: <ljorichardson0912@...>

Subject: New to the List

spinal problems

Date: Monday, January 5, 2009, 6:26 PM

Hi I am new am my name is also.. I am from Mo. I have had degenerated

disk's in my neck and fusion 5 years ago, the last 3 months the pain in the

neck and down my left arm has started all over again. I have had 3

epidural's with no change and I have an appt tomorrow for an EMG.. Has

anyone experienced this.. The pain in my arm is so bad I can't sleep at

night...

Thanks for letting me be a member of the group..

_________________________________________________________________

It’s the same Hotmail®. If by “same” you mean up to 70% faster.

http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_broad1_12200\

8

January 6, 2009

Hi, I'm fairly new to the group. My mother is C3-C4 Incomplete (Quadriplegic). I

wanted to ask the moderator what percentage of the group is taking care of

paraplegics or quadriplegics. It's seems it's a small minority. If the moderator

or anyone in the group knows of any groups that specialize in caring for just

paraplegics and/or quadriplegics please let me know. What's posted has been very

helpful in some areas but taking care of a quadriplegic has very unique

problems.Again if anyone can provide info about groups out there I would

appreciate it.

Shirley Vaughan

From: <ljorichardson0912@...>

Subject: RE: New to the List

spinal problems

Date: Monday, January 5, 2009, 11:26 PM

I am in the kansas city area.

spinal problems@...: i_ownaberner@...:

Mon, 5 Jan 2009 20:28:24 -0600Subject: RE: New to the

List

,What part of MO are you in? I have had several EMGs and they are

notpleasant. If you have any pain medicine you might want to take

oneprior.......if you can take a friend or family member with you it mighthelp.

The worst part of the test and the part they don't always do....iswhere the

place a needle in the muscle and and see how it conducts thru themuscle. Its not

pleasant but its not the worst experience in the world.Deb RN-----Original

Message-----From:

spinal problems [mailto:spinal problems@yah\

oogroups.com]

On Behalf Of Sent: Monday, January 05, 2009 6:26 PMTo:

spinal problems@...:

New to the ListHi I am new am my name is also.. I am from Mo. I have had

degenerateddisk's in my neck and fusion 5 years ago, the last 3 months the

pain in theneck and down my left arm has started all over again. I have had

3epidural's with no change and I have an appt tomorrow for an EMG..

Hasanyone experienced this.. The pain in my arm is so bad I can't sleep

atnight...Thanks for letting me be a member of the

group..__________________________________________________________It's the

same HotmailR. If by " same " you mean up to 70%

faster.http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_broad\

1_122008[Non-text

portions of this message have been

removed]------------------------------------

January 6, 2009

Shirley,

If you search for para or quads nothing comes up....BUT if you search

groups for spinal cord injuries 220 groups pop up.....

Deb RN

RE: New to

the

List

,What part of MO are you in? I have had several EMGs and they are

notpleasant. If you have any pain medicine you might want to take

oneprior.......if you can take a friend or family member with you it

mighthelp.

The worst part of the test and the part they don't always do....iswhere the

place a needle in the muscle and and see how it conducts thru themuscle. Its

not

pleasant but its not the worst experience in the world.Deb RN-----Original

Message-----From:

spinal problems [mailto:spinal problems

]

On Behalf Of Sent: Monday, January 05, 2009 6:26 PMTo:

spinal problems@...: [spinal Disorders

Support]

New to the ListHi I am new am my name is also.. I am from Mo. I have

had

degenerateddisk's in my neck and fusion 5 years ago, the last 3 months the

pain in theneck and down my left arm has started all over again. I have had

3epidural's with no change and I have an appt tomorrow for an EMG..

Hasanyone experienced this.. The pain in my arm is so bad I can't sleep

atnight...Thanks for letting me be a member of the

group..__________________________________________________________It's the

same HotmailR. If by " same " you mean up to 70%

faster.http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_b

road1_122008[Non-text

portions of this message have been

removed]------------------------------------

January 8, 2009

I had an EMG on Tuesday and I called my pain doctor and I still haven't been

scheduled for a mylegram and my appt with the neurosurgeon was on Dec 11. I

called the pain doc and told him I needed to do something for the pain because

it is so bad. I have an appt tomorrow am for a spinal nerve block.. Is that any

different then epidural and if so how is it different. Is there any recovery

time?

Thanks

> spinal problems

> From: melissarobison@...

> Date: Mon, 5 Jan 2009 21:11:55 -0800

> Subject: Re: New to the List

>

> Hey my name is I am also new I have the left arm pain all the time