Re: Re: re Caleb

[Guest guest]

heather,

After only 36 hrs of this, I was terribly dehydrated with a racing heart and

palpitations - I would take Caleb in to the ER for be checked for IV fluids.

The amount of days this has continued sounds serious.

Please keep us posted.

(worried mom)

cynde <blooms@...> wrote:

> > >

> > >

> > >

> > >

> > > Hey Everyone,

> > >

> > > It was so nice to hear from Oliver. I'd like to push those of

us

> > who are

> > > regular readers, but not so much contributors, to add our

voices

> > to the

> > > board. There is so much knowledge out there in so many areas.

> Who

> > are you

> > > and who are your children? What kind of arthritis do they

have?

> > What works

> > > for your child regarding medicines and other treatments? What

> > hasn't

> > > worked? Are your biggest problems medical issues, or school

> issues

> > or social

> > > interactions, or something else completely? Does having jra

> affect

> > your life

> > > all the time, some of the time, hardly at all? Let's kind of

re-

> > introduce

> > > ourselves.

> > >

> > > I'll start. My son Ezra has had systemic jra since the age of

4.

> > He has been

> > > on lots of prednisone, methotrexate, enbrel, remicade, and

> > thalidomide.

> > > Either nothing worked well, or for long, or he had

complications

> > with the

> > > meds and had to be taken off. He has been hospitalized several

> > times for

> > > infections, MAS, and a weird lung inflammation. He started on

> > kineret, along

> > > with arava, IVIG every three weeks and a little bit of

> prednisone

> > almost two

> > > years ago, and has done amazingly well. He has not used a

> > wheelchair or

> > > slept in school for well over a year. Many of his issues have

> been

> > school

> > > and social. He has missed lots of school and is not very adept

> > socially. He

> > > is making progress. He has a few friends, but he's not quite

in

> > the normal

> > > range yet. We are always waiting for the next complication or

> the

> > meds to

> > > stop working, but we are beginning to enjoy this time. It has

> > taken me a

> > > year not to be in " emergency mode " , every time Ezra slept a

half

> > hour later

> > > than usual. So that's a little bit of who we are.

> > >

> > > So, who's next?

> > >

> >

>Hi heather..hope you are doing ok!

flower

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