Re: n's Jaw (was ... Yet Another Question)

[Guest guest]

Hi ,

I hope n's jaw pain wasn't so bad that she had to miss the

sleepover. Maybe, hopefully, it started to diminish somewhat after

having her meds? I hope it doesn't stick around for too long or get real

bad.

Josh just went upstairs to go get the heating pad. Yesterday, and again

today, he's been having some neck pain. That's unusual for him. We'll

have to see what happens. Maybe he strained it, slept on it differently,

or something.

Happy New Year to you, too!

Aloha,

Georgina

WILLIAM PRICE wrote:

> Patty, That dose sounds more normal if she does have systemic. She may

> even have to go higher. n was put on 20mg and improved greatly,

> but all are different. Some kids are put on 60 or somewhere in

> between. Sed rate is an inflammation indicator. Generally it is below

> 20, and some say 10 for kids. C reactive protein is another they

> measure. It should be below 1, but it will be elevated in a flare with

> systemic. Again, since they just upped her dose they will watch to see

> what happens, and if she improves then they will ever so slowly taper.

> She will probably be on that dose from one to two weeks at least to see

> how she responds.

> There are 3 categories of drugs used in this disease. NSaid's-think of

> them simplistically like tylenol, advil and aleve. What they use with

> these kids are lots of other ones that last usually at least 12 hours so

> you don't have to give them so often.

> DMard's- that helps to stop the joint destruction and the actual disease

> rather than just trying to control the inflammation or swelling which is

> what the nsaids do. Methotrexate, plaquenil, sulfasalzine are some

> examples.

> Then you have the tumor necrosis factor (tnf) inhibitors--or

> biologicals. These are pretty new and a great break through for the

> disease. Since they are new, they are very expensive. About 12 grand a

> year. It includes Enbrel, Remicade, Kineret, and Humira. That is all I

> can think of.

> Generally the doctors will start with an nsaid to get the swelling and

> inflammation down. Then they might add steroids with a dmard. If a

> dmard fails, then they move on to a biological. They have to try a

> dmard first most of the time for insurance purposes. Dmard's are lots

> cheaper than the biologicals.

> All of this is very simplistic, but it will give you are start.

> By the way, n woke up for the first time in four years with her jaw

> hurting pretty badly. She is supposed to spend the night with her

> cousin, but as it often so happens, we might have to pick her up

> early. Maybe tomorrow the pain will have moved on to a new place. Happy

> New Year. (marian, almost 15, systemic)