Re: I am new here, my daughter is two.

[Guest guest]

Dear , No, your doctor was not being overly optimistic. The last

5-7 years has seen an explosion of new medications for jra and ra. It is a

great time, if one has to be diagnosed, to have jra. Hopefully, the future

holds more as well. The philosophy of the doctors has changed too, and

study after study seems to support this. The doctors are now very

aggressive with the disease, and one doesn't see the crippling effects of

the disease anymore. There are many people here with tiny ones to help you

out. My daughter is older, 15, and she has systemic jra. She has never

been in remission. She is not crippled at all after five years. Does she

live a normal life? Pretty much, but we work hard at keeping her disease

under control. This disease is a disease of statistics. No one can tell

you what will happen. One can just tell you the statistics of each type of

the disease, and you will just have to wait and see where your child will

fall. Stay on this list and any medical article that is printed in english

will be posted here. You will learn more here than any other place in the

world. Educate yourself, fight for your child at all times, go with your

instinct, and keep a diary of your child and her symtoms, pain, medications

, etc. Do not be afraid to challenge a doctor if you feel something is

wrong. If you have a good doctor, stay with him or her like your life

depends on it. Good luck. (n, 15, systemic)

I am new here, my daughter is two.

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> I am in land and my almost two year old, Hailey, was just

> diagnosed this week. She has seven joints involve and I am scared

> to death she is going to end up crippled. The doctor was VERY

> optimistic that we have come a long way with this disease and

> treatments and that she could actually have no permanent joint

> damage at all. I feel like he is being overly optimistic, which

> isn't at all like most doctors. Am I just being pessimistic?????

>

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[Guest guest]

Welcome,

Where in land are you? I'm in Fairfax County, VA.

Your doc is right~~ We have come a long way with this disease. There are so

many treatment options now, options that weren't around when my 12 year old

daughter was diagnosed in 1994. Between the old and the new options, my

daughter is doing well and is far from crippled. She has many joints

involved and has always needed to be on meds, but is leading a very active

life. It is frightening when your child is diagnosed with a chronic illness,

but the kids really do well. Even the kids who end up with some permanent

joint damage and disability (and we have a few adults here in that boat~~

they were diagnosed before even the " old " treatments were standard) can and

do live normal (whatever that means!), happy, fulfilling lives. Kids with

JRA go on to college, have careers, get married, and raise families. Hang in

there. It gets easier as you see your child's health improve.

Which rheumatologist is your daughter seeing?

Liz

I am new here, my daughter is two.

I am in land and my almost two year old, Hailey, was just

diagnosed this week. She has seven joints involve and I am scared

to death she is going to end up crippled. The doctor was VERY

optimistic that we have come a long way with this disease and

treatments and that she could actually have no permanent joint

damage at all. I feel like he is being overly optimistic, which

isn't at all like most doctors. Am I just being pessimistic?????

[Guest guest]

My rhumatologist told me pretty much the same thing, that based on

her blood test my kiddo (6-pauciarticular) is not likely to have

permanent joint damage. He also said she doesn't have the markers for

adult arthritis which makes it likely that she'll outgrow it. He

didn't rule it out 100%, but he seemed optimistic. This being an

unpredictable chronic disease we all worry quite a bit, but it's also

a manageable disease as far as I can tell (with my vast 2 week

experience). I'm sorry this happened to you, life dishes out some

strange things, doesn't it?

Annie

>

>

> I am in land and my almost two year old, Hailey, was just

> diagnosed this week. She has seven joints involve and I am scared

> to death she is going to end up crippled. The doctor was VERY

> optimistic that we have come a long way with this disease and

> treatments and that she could actually have no permanent joint

> damage at all. I feel like he is being overly optimistic, which

> isn't at all like most doctors. Am I just being pessimistic?????

>

[Guest guest]

,

Keep your chin up. There isn't a parent in this group that hasn't felt

the way you do. It is scary, but there are lots of great treatments

your daughter will partake in to enjoy a happy and healthy life. My

daughter was diagnosed 2 years ago, and she went from have a wrist that

was not only swollen, but didn't move, to being a kid everyone tries to

beat in the monkey bars. My daughter plays soccer, she was the youngest

kid on her traveling hockey team, and she figure skates; she is an

excellent dancer, and a great student to top it off. Don't let me kid

you, we do have our days, and sometimes weeks, but she is doing great.

I think these kids become stronger kids because they have learned an

internal fight. Cuddle your child with love and care, but don't forget

to take care of you!!! Because you can't take care of your daughter if

you aren't well.

Remember there are lots of people that understand here, and there isn't

a stupid question!!!

and Allie (8 poly)

________________________________

From: Gray [mailto:shannon_gray@...]

Sent: Sunday, October 24, 2004 11:12 AM

Subject: I am new here, my daughter is two.

I am in land and my almost two year old, Hailey, was just

diagnosed this week. She has seven joints involve and I am scared

to death she is going to end up crippled. The doctor was VERY

optimistic that we have come a long way with this disease and

treatments and that she could actually have no permanent joint

damage at all. I feel like he is being overly optimistic, which

isn't at all like most doctors. Am I just being pessimistic?????

[Guest guest]

,

My daughter is almost 2 and a half and was diagnosed in June with Poly JRA. I

too had visions of her being crippled. Her doctor is also VERY optimistic. He

was extremely aggressive with her and now 4 months later I have a new kid,

running , playing and acting pain free for the first time in her young life.

Nobody can even tell she has JRA anymore, people use to always ask me, " is she

wearing new shoes? " or " does she have a poop in her diaper? " . No more...she is

doing great and improving with leaps and bounds. Her doctor said she has age on

her side and her chances of remission are great because she is so young. I hope

and pray your daughter has the same response to her treatment!

Feel free to contact me anytime to vent!

Tara and 2 (poly)

I am new here, my daughter is two.

I am in land and my almost two year old, Hailey, was just

diagnosed this week. She has seven joints involve and I am scared

to death she is going to end up crippled. The doctor was VERY

optimistic that we have come a long way with this disease and

treatments and that she could actually have no permanent joint

damage at all. I feel like he is being overly optimistic, which

isn't at all like most doctors. Am I just being pessimistic?????

[Guest guest]

Hi ... My daughter is also two years old and has several joints

involved. She has had three steroid injections on her knees, and is

currently on Methotrexate, Prednisone, and Enbrel. This combination has been

her miracle. She is running around like a normal two year old. You couldn't

even tell that she has JRA half the time.

Your doctor is not only being optimistic, but very honest with you. The

improvements they have made and the drugs that are out there now are

amazing. Caroline has tried quite a few of them before her rheumy decided on

her current " cocktail " . I know that this is an extremely scary time for you

and your family, but things will get better. There are several of us with

very little one's on this board, and several more that their kids were

diagnosed at this age.

Hang in there and keep us updated on Hailey's progress!

Alia and Caroline, age 2, poly and iritis

I am new here, my daughter is two.

I am in land and my almost two year old, Hailey, was just

diagnosed this week. She has seven joints involve and I am scared

to death she is going to end up crippled. The doctor was VERY

optimistic that we have come a long way with this disease and

treatments and that she could actually have no permanent joint

damage at all. I feel like he is being overly optimistic, which

isn't at all like most doctors. Am I just being pessimistic?????

[Guest guest]

Thanks for all of the replies. You have all been really helpful. Hailey is

doing well. She was just diagnosed last Thursday with poly and 7 joints

involved and put on oral methylprednisolone for two weeks to then change to

naproxyn. After just 5 doses of steroids, she only has two joints that are

still swollen and seem to be causing her pain. I am hopeful that she will

get total relief from the steroids before we start the naproxyn. We are in

land and seeing Dr. , the only certified pediatric rheumatologist

in MD. We have been seen at Hopkins for the bone scan and MRI before

diagnosis, though.

Gray, Independent Educational Consultant

Usborne Books At Home (UBAH)

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>From: Emeraldsx3@... >Reply- >To:

> >Subject: Re: I am new here, my daughter is

>two. >Date: Mon, 25 Oct 2004 18:36:15 EDT > >Hi : > >Welcome to the

>list. Ask any and all questions, chances are someone has had >experience

>with it. > >Not pessimistic, worried. It is understandable too. We have all

>had those >feelings....the not knowing, the fear, etc. Here you will learn

>so much. >Knowledge and this group has been so helpful to me. > >My

>daughter, Caitlin (age 12), is one of the very very fortunate ones and is

> >in a clinical remission and has been since March. She may have had a

>small >flare with a rash recently, but nothing more came out of it. > >How

>is your daughter doing now? What meds is she on? I see you're in MD, >we're

>neighbors. I am in VA. Are you seeing a doctor at Hopkins or

> >Children's? > >Take care. >Patty > > >[Non-text portions of this message

>have been removed] >

[Guest guest]

--HI , Welcome...

Thsi disease is very scary in the begining and you have every right

to be a little pessimistic, After all when you hear the word

arthritis the 1st thing you think of is old folk with misshapen

hands ( or, at least, I did) These days they have so many new and

wonderful drugs out there that im sure that only happens in the

rarest of difficult to treat cases.

The best thing you can do right now if read, read, read and find out

all you can about JRA and the related medications..

and keep reading ( and posting to) this list! ))

HUgs Helen and (7,systemic)

- In , " Gray " <shannon_gray@h...>

wrote:

>

>

> I am in land and my almost two year old, Hailey, was just

> diagnosed this week. She has seven joints involve and I am scared

> to death she is going to end up crippled. The doctor was VERY

> optimistic that we have come a long way with this disease and

> treatments and that she could actually have no permanent joint

> damage at all. I feel like he is being overly optimistic, which

> isn't at all like most doctors. Am I just being pessimistic?????

>