My daughter

[Guest guest]

Hi,

The Nap and the pred can cause bleeding after a while.Not sure about the MTX,it is known for causing nausea and stomache aches but don't know about bleeding.

Noticed you are systemic and guessing 15yrs old or have been diagnosed for 15yrs.Either way feel free to introduce yourself and tell your story.This is a great support group.Wonderful knowledge,education,support and easy to use.

Hugs

Becki and 5 systemic

[Guest guest]

Barb,

How is she doing today? It'a awful that in order to help prevent

seizures that our babies have to go through so much pain. I hope and

pray that she's doing better. I'll keep you both in my prayers. God

Bless!

Grace

On Fri, 05 Mar 2004 11:12:18 -0700 Barb Hunte <bhunte@...> writes:

> Hello All,

>

> I'm not good at typing updates these days, I feel like I'm loosing

> my mind.

>

> I tried cranberry for two weeks straight and not a change!

> Initially I used juice, then I switched to capsules. She had three

> a day for 2 weeks, and not a change! She's in an Atkins ketosis, so

> we tried adding a few ketogenic snacks to help increase her carbs

> without breaking ketosis. This actually seemed to help her urinary

> tract?!? Probably something to do with acidity vrs alkalinity. Her

> urine is registering as high alkalinity. Acidic system? Leeching

> Mg and Ca?????

>

> Seizure activity is still under control. We've only had a few

> partials. Good news. But my poor darling can only eat about 4

> foods, I'm not exaggerating! I tried all the good fats (pumpkin

> seed, olive, coconut because she's in ketosis) but they gave her

> stomach aches, loose stool, and bed wetting (all consistent with

> salisalyte sensitivity). I switched to sunflower, not the best, but

> stomachache, stool are normal and bedwetting is improving. She was

> cringe for hours a day over her food (no variety, dripping in oil)

> so I tried to add a bit of cream and butter for taste. (She's only

> on 7 carbs/day so I can't add rice milk products, and she's reacted

> to soy in the past). After 4 days of a bit of cream and butter, her

> stomachaches increased, and then on the fourth night (last night)

> she vomited every where!

>

> How can she react to everything good for her? What is she supposed

> to eat?

>

> I'll be writing neurology today, I pray they get on board. There

> has to be something in her gut acting up. Or parasites.

>

> Thanks again, I appreciate ALL prayers, God bless you all, I'll

> keep you posted,

>

> Barb

>

>

> ***Attention ***

> New email address Please update your address book

> My new email is bhunte@...

>

>

>

[Guest guest]

Grace,

Thanks for asking. Today was slightly better. But her lethargy is bad, and

she is so sick of her food options, she prefers not to eat, especially with

her stomach hurting. A couple of times today I found her hiding in her

closest because she didn't want any more 'yucky things to eat'. She used to

sing, dance, draw pictures, and tell stories. She is such a trooper, but

she seems to be coming to her psychological end too. For the first time,

today she told me it was too hard to swallow her pills and she couldn't do

it any more.

Thanks for your prayers, this is an awful journey, you do a great job of

keeping your chin up. I'm afraid I've not mastered that as well as you.

Thanks for your encouragement.

This group is amazing, thank you ALL,

Barb

***Attention ***

New email address Please update your address book

My new email is bhunte@...

Re: [ ] My daughter

> Barb,

>

> How is she doing today? It'a awful that in order to help prevent

> seizures that our babies have to go through so much pain. I hope and

> pray that she's doing better. I'll keep you both in my prayers. God

> Bless!

>

> Grace

>

> On Fri, 05 Mar 2004 11:12:18 -0700 Barb Hunte <bhunte@...> writes:

> > Hello All,

> >

> > I'm not good at typing updates these days, I feel like I'm loosing

> > my mind.

> >

> > I tried cranberry for two weeks straight and not a change!

> > Initially I used juice, then I switched to capsules. She had three

> > a day for 2 weeks, and not a change! She's in an Atkins ketosis, so

> > we tried adding a few ketogenic snacks to help increase her carbs

> > without breaking ketosis. This actually seemed to help her urinary

> > tract?!? Probably something to do with acidity vrs alkalinity. Her

> > urine is registering as high alkalinity. Acidic system? Leeching

> > Mg and Ca?????

> >

> > Seizure activity is still under control. We've only had a few

> > partials. Good news. But my poor darling can only eat about 4

> > foods, I'm not exaggerating! I tried all the good fats (pumpkin

> > seed, olive, coconut because she's in ketosis) but they gave her

> > stomach aches, loose stool, and bed wetting (all consistent with

> > salisalyte sensitivity). I switched to sunflower, not the best, but

> > stomachache, stool are normal and bedwetting is improving. She was

> > cringe for hours a day over her food (no variety, dripping in oil)

> > so I tried to add a bit of cream and butter for taste. (She's only

> > on 7 carbs/day so I can't add rice milk products, and she's reacted

> > to soy in the past). After 4 days of a bit of cream and butter, her

> > stomachaches increased, and then on the fourth night (last night)

> > she vomited every where!

> >

> > How can she react to everything good for her? What is she supposed

> > to eat?

> >

> > I'll be writing neurology today, I pray they get on board. There

> > has to be something in her gut acting up. Or parasites.

> >

> > Thanks again, I appreciate ALL prayers, God bless you all, I'll

> > keep you posted,

> >

> > Barb

> >

> >

> > ***Attention ***

> > New email address Please update your address book

> > My new email is bhunte@...

> >

> >

> >

[Guest guest]

Barb,

Poor baby, please give her a great big hug for me and I hope and pray

that she'll start feeling better very soon. God Bless!

Grace

On Mon, 08 Mar 2004 20:13:11 -0700 Barb Hunte <bhunte@...> writes:

> Grace,

>

> Thanks for asking. Today was slightly better. But her lethargy is

> bad, and

> she is so sick of her food options, she prefers not to eat,

> especially with

> her stomach hurting. A couple of times today I found her hiding in

> her

> closest because she didn't want any more 'yucky things to eat'. She

> used to

> sing, dance, draw pictures, and tell stories. She is such a

> trooper, but

> she seems to be coming to her psychological end too. For the first

> time,

> today she told me it was too hard to swallow her pills and she

> couldn't do

> it any more.

>

> Thanks for your prayers, this is an awful journey, you do a great

> job of

> keeping your chin up. I'm afraid I've not mastered that as well as

> you.

> Thanks for your encouragement.

>

> This group is amazing, thank you ALL,

> Barb

> ***Attention ***

> New email address Please update your address book

> My new email is bhunte@...

> Re: [ ] My daughter

>

>

> > Barb,

> >

> > How is she doing today? It'a awful that in order to help prevent

> > seizures that our babies have to go through so much pain. I hope

> and

> > pray that she's doing better. I'll keep you both in my prayers.

> God

> > Bless!

> >

> > Grace

> >

> > On Fri, 05 Mar 2004 11:12:18 -0700 Barb Hunte <bhunte@...>

> writes:

> > > Hello All,

> > >

> > > I'm not good at typing updates these days, I feel like I'm

> loosing

> > > my mind.

> > >

> > > I tried cranberry for two weeks straight and not a change!

> > > Initially I used juice, then I switched to capsules. She had

> three

> > > a day for 2 weeks, and not a change! She's in an Atkins

> ketosis, so

> > > we tried adding a few ketogenic snacks to help increase her

> carbs

> > > without breaking ketosis. This actually seemed to help her

> urinary

> > > tract?!? Probably something to do with acidity vrs alkalinity.

> Her

> > > urine is registering as high alkalinity. Acidic system?

> Leeching

> > > Mg and Ca?????

> > >

> > > Seizure activity is still under control. We've only had a few

> > > partials. Good news. But my poor darling can only eat about 4

> > > foods, I'm not exaggerating! I tried all the good fats

> (pumpkin

> > > seed, olive, coconut because she's in ketosis) but they gave

> her

> > > stomach aches, loose stool, and bed wetting (all consistent

> with

> > > salisalyte sensitivity). I switched to sunflower, not the best,

> but

> > > stomachache, stool are normal and bedwetting is improving. She

> was

> > > cringe for hours a day over her food (no variety, dripping in

> oil)

> > > so I tried to add a bit of cream and butter for taste. (She's

> only

> > > on 7 carbs/day so I can't add rice milk products, and she's

> reacted

> > > to soy in the past). After 4 days of a bit of cream and butter,

> her

> > > stomachaches increased, and then on the fourth night (last

> night)

> > > she vomited every where!

> > >

> > > How can she react to everything good for her? What is she

> supposed

> > > to eat?

> > >

> > > I'll be writing neurology today, I pray they get on board.

> There

> > > has to be something in her gut acting up. Or parasites.

> > >

> > > Thanks again, I appreciate ALL prayers, God bless you all,

> I'll

> > > keep you posted,

> > >

> > > Barb

> > >

> > >

> > > ***Attention ***

> > > New email address Please update your address book

> > > My new email is bhunte@...

> > >

> > >

> > >

[Guest guest]

Hey guys,

I watch this board because they suspect my youngest daughter to possible have

a sort of arthritis, but still just diagnosed at Hypermobility Joint Syndrome

at this time.

Now my oldest (9-year-old) got sick last week with a low-grade fever, so

today after 7 days of fever and the run around down here I drove two hours to

the

Childrens Hospital in Oklahoma City. Doc there gave me a printout of her lab

reports and said to talk to the Ped Rheumy I use for my other daughter. Can

someone please explain all this to me, he tried, but is only an emergency room

doc, so he was just confused by all the abnormal results. Not sure if it even

needs to be seen by a rheumy or what. We are now at 24-hours fever free

woohoo, but still screwy labs.

Today at Children's a complete blood workup including CBC with manual diff,

ESR, CMP, and CRP were done. They did not do ANA because they were thinking

mono, but mono test was negative. The abnormalities are listed below:

Platelets elevated at 412.

MPV down 6.9.

BANDS high at 15

ESR elevated at 37

Potassium low at 3.3

CRP high at 24.3

Thanks much,

in Oklahoma

[Guest guest]

There is a lot of useful information about recognizing when your child has

arthritis or another disease and whether or not your doctor is doing a good job

of evaluating your child's complaints in a new book. It's not just growing

pains by J. A. Lehman MD was just released by Oxford Press and has tons

of information on evaluation, medications, the meaning of laboratory tests and

how to get the best results for your child. It's only $24.50 on Amazon. See

http://www.goldscout.com/toc.html for reviews and a lot more information.

[Guest guest]

Hi ,

Pauci JRA is the mildest form of JRA and remission is common and so is coming

out of remission.Your daughter NEEDS to be under the care of a pediatric

rheumatologist.When she doesn't need the meds she doesn't need the meds but it

sounds like right now she does.The thing that concerns me the most is the

eyes.You do know that even when the arthritis is in control,eye inflimation can

happen with no outward sighns and if not treated can lead to blindness.

The reason your little one can not keep up and do things that other kids can

is because the arthritis is not gone,it may be mild and she may only need an

NSAID but it's not a good sighn that 3 joints are now being effected.Alot of

times a child wants to be so normal that they don't compain of pain.Only a

trained rheumatologist can find even the most remote amount of inflimation.

Your daughters joints can be withering away and lead to permenant joint

damage.I urge you to call the rheumy and get her seen ASAP.This may sound harsh

but

who cares that she cries duiring lab work.Most kids do but it is necessary

and just part of the disease.It's by no means fair but you just have to realize

your daughter has JRA and without the proper treatment life and pain can

become far more worse then the ocasional blood draw.You are your childs best

advocate,please don't stay in denial.It's not good for you or your child.Even

Pauci

JRA can destruct and destroy.

Again,sorry if I hurt you,but you realy need need to consider the major

impact of ignoring everything and just wishing things were fine and ok.Believe

it

or not there is a saying, it's called " The I am ok syndrome " .It's not a good

thing to have.

Hugs and prayers for you and your child.

Becki and 6 systemic JRA

[Guest guest]

,

Motrin is a " band-aid " approach to treating JRA. It seems that

she's been in " remission " for a little while and the symptoms are

now back. You may need to face the fact that the JRA may be back

and maybe be more aggressive with meds. A DMARD (disease modifying

anti-rheumatic drug) might be in order. I hope you are still being

followed by a rheumatologist every three months or so. Hating

bloodwork is not a really good reason to not see your rheumy, but I

understand your hesitation. I would get in there and discuss all

the treatment options all over again. Remember, that when there is

joint pain, there is typically irreversible joint damage occurring

as well. You need to try to prevent as much of the damage as you

have the power to do.

We all know how difficult getting bloodwork can be. My 8 year old

has screamed bloody murder each time for 5 years now, until the last

two months blood draws. There are ways to try to work this out.

Firstly, there is a topical anaesthetic cream that can be applied to

the needle site two hours before a blood draw. It is called EMLA.

There is also a generic for it with prilocaine and lidocaine as the

active ingredients. It really does work and the child really won't

feel the needle. My son also complained about the pinching of the

rubber strap. So if a child size blood pressure cuff was available,

we would try that. They actually came up with a cloth belt that we

use now. That takes care of the pain. However, if it's the

psychological aspects that are torture, that's another story. Let

us know the issues with the bloodwork and we'll help more (we've all

been there).

I wish you the best and hope your daughter gets better relief soon.

Stacia and Hunter 8 systemic, iritis

> My daughter pauciaricular jra she had trouble walking

after

> she fell,she was4 when we all were toled she had this. saw

a

> rheumatoligist for almost ayear,she was on naproxen,but then she

> seemed to improve,she didnt need the med,or any speacial

drs,

> is now five in kindergarten,off and on she complains her knees

hurt

> fingers and arms and jaw,I give her children motrin once in a

> while,Idont know ifI need to take her back because its not all the

> time,plus she use to cry every time I took her to get blood work,I

> really thought she maybe didnt have jra because she got better,I

dont

> understand why she can do alot like her friends. Im really not

sure

> what I should do does anyone know.

[Guest guest]

-

So you are suspecting this is jra? Given the morning stiffness, that seems quite possible, although I'm not sure of the significance of the plasma found in the biopsy. Is the knee warm to the touch? No other joints impacted? No fevers, rashes? Sounds like it could be pauciarticular jra, which my daughter has. Hers started in one knee when she was 17 months old. If there's a kind of jra to have which is "best," it's pauciarticular. It tends to confine itself to fewer, big joints. And it is the kind most likely to go into remission. My daughter has been in unmedicated remission for some time now. What you do need to watch for, if it's this, is eye problems. Children with pauciarticular jra, who test positive for antinuclear antibodies(ANA) are at highest risk for iritis (inflammation of the iris), and this can often be a persistent problem, even when the arthritis is under control. It can be very serious and lead to vision loss. My advice is to read up on jra before going to the doctor, so you can ask intelligent questions and get the most out of the visit. Make sure you schedule an appt with a pediatric opthamologist if it is jra. One good possibility for pauciarticular jra is a joint injection, if basic anti-inflammatories aren't working. We had great success with an injection -- symptom free for one year before the arthritis returned. There are many other medication options to explore if anti-inflammatories don't work -- methotrexate or some other DMARD might be a next step . .. biologics like Enbrel are another option. I know it's tough to drop your child off at school when she is stiff, and can't run around and play. But children are remarkably adaptable, more so than adults! Try getting her up early so she can take a warm bath before school to loosen up and soothe her joints. Also, the joint may stiffen up and become contract if she isn't working it to keep up a full range of motion. Talk to the doctor about exercises she can do, and you can help her with, if this appears to be becoming a problem. This board is a great resource! Best of luck!

Diane (, 6, pauci (in remission), iritis)

[Guest guest]

Welcome . I am sorry to hear of your dd's problem. It could be

pauci jra. Are you seeing a ped rheumy? The ideas I have for morning

stiffness are have her take a warm bath in the morning before school.

While the knee is soaking gently move it to help relieve the stiffness.

My son had this problem with his ankles primarily in the beginning and

the physical therapist told us to have him soak his feet in warm water

and gently rotate the ankle. It did help. Yes, he got up early to do

this but until we got the JRA under control he needed to do this to be

able to walk. If your child is in public school you should set up an IEP

plan or 504 plan meeting with the school staff. I do not have any

personal knowledge on these, but others here definitely know a lot and

will be responding I am sure. Sometimes accommodations need to be made

for your child to arrive a bit later in the morning, or getting up and

down off the floor, etc. and the teachers need to be aware of the

situation. If you go to www.arthritis.org there are pamphlets you can

get for free to give to the teachers. My son went to private school and

so I just talked with his teachers and they were very flexible with him.

I recommend you read as much as you can about the disease before you go

to the rheumy, in case she is diagnosed. There are many forms arthritis

can take and the more knowledge you have the better. This list is a

great resource. I have found much comfort and support here since my

son's diagnosis. Good luck to you and ask any questions you may have.

Someone is sure to answer, Michele (18, pauci & spondy)

My daughter

Siona is five. In July she was hospitalized with what the doctors

thought might be a septic

knee. While that proved false they did discover plasma cells from a

biopsy they took when

the operated on her knee. We are still waiting to see the rheumatologist

(9/6) and have her

on ibuprofin. She starts Kindergarten next week and her knee is still

swollen and stiff for

the first hour or so in the morning. Any suggestions on how to proceed;

with the doctors,

with ways to relieve her of her stiffness and discomfort. We are new to

this. Thanks very

much.

[Guest guest]

Welcome ,

We all know the struggles you are feeling right now with this disease. Although my daughter has never had morning stiffness, I do know that when she has been sick, a bath is the best thing. Use this board as a resource. I have only been a member for just short of a year, and have learned tons! Ask questions, and read as much as you can. Use a notebook to write down your questions. I don't know where you are located in the country, but our Arthritis Chapter holds a quarterly meeting for families. I have met some wonderful people there, and they have been of great support in our battle with Arthritis. The most recent AJAO meeting was held in Providence Rhode Island. It is great for learning! Next summer it will be in Atlanta. Your entire family will learn! We have a new set of friends because of this disease. Ask the questions. Keep reading, and you will learn how to treat your daughter, and the other members of your family!

and Allie (9 poly)

From: [mailto: ] On Behalf Of Tepper, MicheleSent: Friday, August 26, 2005 12:28 PM Subject: RE: My daughter

Welcome . I am sorry to hear of your dd's problem. It could bepauci jra. Are you seeing a ped rheumy? The ideas I have for morningstiffness are have her take a warm bath in the morning before school.While the knee is soaking gently move it to help relieve the stiffness.My son had this problem with his ankles primarily in the beginning andthe physical therapist told us to have him soak his feet in warm waterand gently rotate the ankle. It did help. Yes, he got up early to dothis but until we got the JRA under control he needed to do this to beable to walk. If your child is in public school you should set up an IEPplan or 504 plan meeting with the school staff. I do not have anypersonal knowledge on these, but others here definitely know a lot andwill be responding I am sure. Sometimes accommodations need to be madefor your child to arrive a bit later in the morning, or getting up anddown off the floor, etc. and the teachers need to be aware of thesituation. If you go to www.arthritis.org there are pamphlets you canget for free to give to the teachers. My son went to private school andso I just talked with his teachers and they were very flexible with him.I recommend you read as much as you can about the disease before you goto the rheumy, in case she is diagnosed. There are many forms arthritiscan take and the more knowledge you have the better. This list is agreat resource. I have found much comfort and support here since myson's diagnosis. Good luck to you and ask any questions you may have.Someone is sure to answer, Michele (18, pauci & spondy)-----Original Message-----From: [mailto: ] OnBehalf Of AugustSent: Thursday, August 25, 2005 4:29 PM Subject: My daughterSiona is five. In July she was hospitalized with what the doctorsthought might be a septic knee. While that proved false they did discover plasma cells from abiopsy they took when the operated on her knee. We are still waiting to see the rheumatologist(9/6) and have her on ibuprofin. She starts Kindergarten next week and her knee is stillswollen and stiff for the first hour or so in the morning. Any suggestions on how to proceed;with the doctors, with ways to relieve her of her stiffness and discomfort. We are new tothis. Thanks very much.

[Guest guest]

G'day and Siona (what a gorgeous name!)

We're in Australia- our son Bayly was diagnosed with Pauciarticular JRA

at 13 months. He is now 3 and has been upgraded to Extended

Oligoarthritis, as his 1 original joint (left ankle) turned into 6 in

his first 6 months.

He is ANA factor positive, but as yet is clear of Uveitis/Iritis. (This

difference of language gets me sometimes!!) We see an Ophthalmologist

this coming Friday for his regular testing.

Our best defense against morning stiffness is Prednisone/Prednisolone.

I give it to him as early as 4.30am to give it time to work

before 'getting up time'. But since you're not at that level yet, I

recommend the warm bath in the mornings, also the stretchy bandage you

can get from a physio, or chemist/pharmacy (you call them drug

stores?). It supports the knee/ankle and also can provide warmth.

Aside from that, on cold days (or nights even, before bedtime), I pop

Bayly's clothes into the dryer to warm them up a little before he puts

them on. It helps.

As for the doctor's visits- it pays to write down any questions,

reading what you can beforehand, to make the most of the time you have

with the doc. If you're lucky, you'll get a doc who gives you plenty

of time!

All the best,

Jo

Bayly, 3, extended oligo

> Siona is five. In July she was hospitalized with what the doctors

thought might be a septic

> knee. While that proved false they did discover plasma cells from a

biopsy they took when

> the operated on her knee. We are still waiting to see the

rheumatologist (9/6) and have her

> on ibuprofin. She starts Kindergarten next week and her knee is still

swollen and stiff for

> the first hour or so in the morning. Any suggestions on how to

proceed; with the doctors,

> with ways to relieve her of her stiffness and discomfort. We are new

to this. Thanks very

> much.

[Guest guest]

-Hi peter and sonia..

Welcome to the group... i hope you find some answers soon. Warm baths

are good in the mornings. I also used a hot water bottle a lot with my

son. recently I have found a gingerbread cookie filled with rice that

i heat in the microwave and is more kid friednly, holds the heat well

and molds to his joint. he sleeps with it too like a stuff toy.

I found mine at www.cozycookie.com but i have heard of others making

their own.

it might also be a good idea to meet with 's teacher before

school and the school nurse and let them know whats going on. The

Arthritis Foundation have booklets called " When your student has

arhtritis " this is a great book and a quick read. it might help the

teacher understands what your daughter is going though and what the

teacher could do to help or be on the watch for.

keep in touch, theres always a lot of great ideas on the list. I have

learnt SOO much!

hugs Helen and (8,systemic)

-- In , " August " <augustpj@s...> wrote:

> Siona is five. In July she was hospitalized with what the doctors

thought might be a septic

> knee. While that proved false they did discover plasma cells from a

biopsy they took when

> the operated on her knee. We are still waiting to see the

rheumatologist (9/6) and have her

> on ibuprofin. She starts Kindergarten next week and her knee is

still swollen and stiff for

> the first hour or so in the morning. Any suggestions on how to

proceed; with the doctors,

> with ways to relieve her of her stiffness and discomfort. We are new

to this. Thanks very

> much.

[Guest guest]

Awww Congratulations Beth!!!!

Shaye

[Guest guest]

In a message dated 9/27/2005 5:54:51 AM Eastern Daylight Time,

shaye@... writes:

Awww Congratulations Beth!!!!

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

Thanks, Shaye. Noah Maxwell arrived Sept. 26, at 10:02 p.m., (CST) 8

lbs., 2 oz. That's all the info. I have now, as my dd was tired and

nauseated when she called.

I'm waiting for a picture!

Beth

[Guest guest]

Oh - how exciting. Congratulations!!!

Deb s-pgh

--- ByrneBunch@... wrote:

>

> In a message dated 9/27/2005 5:54:51 AM Eastern

> Daylight Time,

> shaye@... writes:

>

> Awww Congratulations Beth!!!!

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~

> Thanks, Shaye. Noah Maxwell arrived Sept.

> 26, at 10:02 p.m., (CST) 8

> lbs., 2 oz. That's all the info. I have now, as my

> dd was tired and

> nauseated when she called.

>

> I'm waiting for a picture!

>

> Beth

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

> Noah Maxwell arrived Sept. 26, at 10:02 p.m., (CST) 8

> lbs., 2 oz.

Congrats to the new parents & grandparents!!! I hope all is well &

that your daughter is enjoying her new addition!

Colleen

Handcrafted & Decorative Soaps

http://www.countrymeadowcreations.com

Kat's Coffees & More Consultant #0892- Join now for FREE!

[Guest guest]

In a message dated 9/27/2005 11:45:10 AM Eastern Daylight Time,

countrymeadowcreations@... writes:

Congrats to the new parents & grandparents!!! I hope all is well &

that your daughter is enjoying her new addition!

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

Thanks! We're still waiting for a picture. :-)

Beth

[Guest guest]

Beth, congratulations and best wishes to your daughter and sil. Hope all

are well.

Jeanine

[Guest guest]

In a message dated 9/29/2005 12:13:55 PM Eastern Daylight Time,

GFuoco@... writes:

Oh Beth ... Congratulations on the new baby ... I hope you post a

picture when you get one... ..

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

Thanks Kim! They sent a bunch of pics the other day, and I'm trying to

figure out how to post just 1 or 2. Otherwise, it'll take all the space in the

files, LOL.

Grandma Beth

[Guest guest]

Oh Beth ... Congratulations on the new baby ... I hope you post a

picture when you get one... ..

Kim Fuoco ...

>

> In a message dated 9/27/2005 5:54:51 AM Eastern Daylight Time,

> shaye@m... writes:

>

> Awww Congratulations Beth!!!!

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~

> Thanks, Shaye. Noah Maxwell arrived Sept. 26, at 10:02

p.m., (CST) 8

> lbs., 2 oz. That's all the info. I have now, as my dd was tired

and

> nauseated when she called.

>

> I'm waiting for a picture!

>

> Beth

>

>

>

[Guest guest]

Hi there,

My daughter has had jra for 11 years and 9 months........She is 12 years

5 months now. She has been on MTX for about 10 years also, just like .

It has always been a good drug for her.....she started on the oral liquid,

then the pills, then the injection......I know it seems awfully scary to be

putting your child on it, but it truly did a great job keeping Holly

walking.....I made a decision long ago to put quality of life first.....I

wanted her to

be as much a typical kiddo as possible. And it has worked for the most part.

There are lots of us here that can answer many questions, some of us have

been down this road a long time.........just ask if you need anything.....

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly)

[Guest guest]

Welcome to the group - I am sorry to hear that your daughter's condition has

worsened. Is she taking iron supplement for the anemia. Our doctor told us

that the inflammation from the JRA is what causes the anemia. Our daughter

has taken Methotrexate for 2 years now. The medication has given Hunter her

life back. There have been some minor side effects from the drug. To keep

Hunter healthy and active we are constantly walking a thin line. Good luck.

Sandi Ken Hunter (7 Systemic/Asthmatic)

[Guest guest]

I understand your fear. That's normal. I'll just tell you that my

daughter, like yours, started with a joint injection, which kept her

inflammation

free for a year. When the arthritis came back, it had moved to other joints.

We started her on methotrexate (I believe she was 3 (maybe 4) at the time).

Within 6 weeks, she was symptom free and has remained so now for a few years.

We stopped the methotrexate for a while, but recently started up on it

again, not for the arthritis, but because of her iritis, which has continued to

flare. She's had no problems at all with side effects. Every case is

different, but I hope this eases your mind somewhat. With regular blood tests,

any

problems can be caught early on and addressed. It's not as bad as the

package inserts make it sound!!!!!

Diane (, 7, pauci in remission, iritis)

[Guest guest]

I am glad you found our group and actually this discussion about

methotrexate (mtx) has been kind of active on the board. If you look

thru some previous posts you will find lots of good comments on the

subject.

I was very reluctant to start our daughter on mtx and worried lots

about potential serious side effects.

The good news was that within a few months my daughters arthritis was

finally controlled and she remained flare free for nearly 10 months.

We recently weaned her off the mtx after she had been on it for a

year. She has had some stiffness in the mornings and transient joint

pain return but so far its not to the point where she needs to restart

anything.

As far as side effects you will find that some kids have nothing

others have miner probems. Aundrea had some nausea, fatigue, and

stomach cramps.

Please feel free to continue to ask your questions and we will do

whatever we can to help!

Blessings,

(Aundrea 10 systemic jra)

>

> My daughter has had jra for the past 3 yrs. Last year she was

given

> corticosteroids in her knees and went into remission for 10 months!!

> It's back and the naprosen and sulfasalazine that she is on is no

> longer working. Her dr. said its time for methotrexate. We are

very

> scared to give this to her. She's only 5 yrs old! If there is

anyone

> with information or suggestions we would greatly appreciate hearing

> from you. We are new to this group. Also she is very aneimic.

>