Re: Conference and Digest Number 5379

January 17, 2008

Yes.. to NAtional AJAO in Costa MEsa...

I would So ay.. Go for it!!! It will be invaluable in getting support and

just the expereince of not feeling a lone. A lot of people don't have

diagnosis but have symptoms etc like your daughter and you never know what

you might learn or just whom you might meet.

It's a absolutely wonderful expereince to attend AJAO... I can't even really

explain just how wonderful it is....

Please do it and hope everyone in the family can make it too if possible!!

Issadora

On Jan 17, 2008 12:16 AM, Schulman <dietdoc@...> wrote:

> I'm relatively new to the group and have been mostly lurking and

> learning from you these days.

>

> Beth and everyone...are you referring to the National Juvenile Arthritis

> Conference in Costa Mesa this summer? I'm in CA (daughter is seen by rheumy

> at UCLA) and should probably attend this one. What do you think?

>

> My kiddo is 6 years old and not textbook either. She has chronic joint

> pain (mostly at night, which I don't understand at all) in her ankles and,

> on bad nights, it migrates to her wrists, knees, etc. Her WBC count, IgA,

> IgG, etc. are low and controlled with IVIG. I'm so worried about us not

> preventing progression of " it " and only doing pain management (which is a

> struggle as well). Nights are treacherous and we are constantly struggling

> with " it " ...what to do...how far to push her docs...are there answers to be

> had...

>

> mom to 6 year old, JIA? CVID

>

January 17, 2008

Hi :

Yes it is the conference in CA we are speaking of. Our family has decided to

attend despite lack of diagnosis. You asked if it was a good idea and I say if

you can afford to go, YES! You also asked about pushing doctors, which we have

struggled with. We have not been treated kindly by our local Children's

hospital in rhuematology and encountered mostly ego in our pain management

experience. Hannah is IGG deficient also, but not enough to qualify for IVIG.

We see a wonderul immunologist at our children's hospital, so not everyone there

has been a bad experience. She is extremely hypermobile, which I feel to some

degree is impeding our diagnosis. We have been at this for 2 years.

Are there answers to be had, you ask? Again I say yes. Somewhere there is a

doctor out there that can figure all this out and I won't stop until I find

them. I can't just ignore the symptoms Hannah has or the injuries she sustains

as a result. Nights can be rough for Hannah too. She pushes her self and

sometimes forgets to take it easy. Hannah's labs have been all over the board,

but always explained away, which frustrates me.

Hope this helps.

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Conference and Digest Number 5379

I'm relatively new to the group and have been mostly lurking and learning from

you these days.

Beth and everyone...are you referring to the National Juvenile Arthritis

Conference in Costa Mesa this summer? I'm in CA (daughter is seen by rheumy at

UCLA) and should probably attend this one. What do you think?

My kiddo is 6 years old and not textbook either. She has chronic joint pain

(mostly at night, which I don't understand at all) in her ankles and, on bad

nights, it migrates to her wrists, knees, etc. Her WBC count, IgA, IgG, etc. are

low and controlled with IVIG. I'm so worried about us not preventing progression

of " it " and only doing pain management (which is a struggle as well). Nights are

treacherous and we are constantly struggling with " it " ...what to do...how far to

push her docs...are there answers to be had...

mom to 6 year old, JIA? CVID

January 17, 2008

,

I have not been to this conference yet either but am looking forward to it

(remember that is how we met!) - I would say you and Dani should definitely

plan to attend, and dh too if he is available. Dr. M says she realllllly wants

to attend. I remember how much I learned in the one afternoon

mini-conference at UCLA - can you imagine a 2-3 day full-scale conference? They

have special activities geared for the different age groups, family activities -

people who have attended say it is an amazing experience and they come away with

increased knowledge and new friends with similar paths.

and I will definitely be attending!

How is Dani this week?

Hugs,

Schulman <dietdoc@...> wrote:

I'm relatively new to the group and have been mostly lurking and learning from

you these days.

Beth and everyone...are you referring to the National Juvenile Arthritis

Conference in Costa Mesa this summer? I'm in CA (daughter is seen by rheumy at

UCLA) and should probably attend this one. What do you think?

My kiddo is 6 years old and not textbook either. She has chronic joint pain

(mostly at night, which I don't understand at all) in her ankles and, on bad

nights, it migrates to her wrists, knees, etc. Her WBC count, IgA, IgG, etc.

are low and controlled with IVIG. I'm so worried about us not preventing

progression of " it " and only doing pain management (which is a struggle as

well). Nights are treacherous and we are constantly struggling with " it " ...what

to do...how far to push her docs...are there answers to be had...