update

[Guest guest]

Hi all,

It was quite an intersesting apointment with the Enbrel king today (Dr.Lovell

at Cincinnati Childrens).

Instead of being the property of Amgen and only known as DAL and a # it was

Larson.

The visit was just as long and thorough.I dressed in baggy sweat pants

that could be pulled over his knees but he still had to change into paper

shorts.Dr Lovell just wasn't sure if he felt anything or not and 3 months ago

Vanderbilt immediately felt through his jeans and found some small amount of

swelling.Or so they said!

does have active arthritis in his lft wrist with some lost ROM but no

pain or tenderness,it was a surprise to all of us.Everything else looks great

and in general looks great.

Dr.Lovell started looking at the cover paige with s weight,36.2kilo,and

I just knew he was finaly going to up the Enbrel to the starting dose of .4mg

per kilo which would be .6 2x a week or 30mg instead of the 1ml or 25mg 1x

weekly.

He got on his palm pilot and started talking about outgrowing his dose of

MTX(7.5mg).He continued to explain about a study that consisted of 5mg M2 and

10mg M2 and how the 5mg M2 was the same as placebo and the 10mg M2 helped.Not

saying the dose was 5mg verses 10mg.

It was explained to me with weighing 80 lbs 7.5mg was the same as

giving sugar pills or a placebo.He was going to just up his MTX to 10mg but with

the way grows in height and weight it would still be borderline and within

6 months definately placebo again.He went ahead and raised the MTX to 12.5mg

with the hopes of finding absolutely nothing again in 6 months.Then if a year

with no sighns or symptoms tapering meds again.

He is so kid friendly. had a terrible skin reaction to the pool and

broke out in a nasty rash Sunday night.Lovell started teasing him about having

cooties and the only way to get rid of them was by kissing the girl that gave it

to him.Davied floated and floated on his back and a 9-10 yr old girl swam

under him a few times. all of a sudden started scraching his arms until

they

were bright red.Then Lovell told him I hope I don't get your cooties or I will

have to find the girl and kiss her too.Told him he's never seen such a bad

case of cooties and just after started to believe him,in a very serious

voice told him that it was just the chlorine,what was saying all along.

Just totaly differant then Vanderbilt in Nashville.I will never forget when

old man Lawton told him to get on the table. being 4 at the time hesitated

and Lawton yelled at him about how he wasn't his only patient,it's always

such a rush.

It is so worth the 307 mile drive to get the JRA chair for CARRA to see your

child,especialy since they treat your kid like a kid.

The added bonus is seeing and and while unexpexted this time

Uncle Rusty.The handsome man is not bald,it's short but good looking on him and

oh so soft.He has great hair!

Got to talk to Tree who sounded great.She is progressing everyday and

hopefully by this summer she will be more out and about.

The kicker to the trip was as soon as we walked into rheumatoligy was a

friend of mine from our AJAO checking in her 7 yr old daughter with SOJRA who

sees

Dr.Graham.They live just outside of Nashville also and HATE Vanderbilt

too. seen his dad who headed up ped cardiology when he was 2 weeks old.

Traiter,needs to come back to Nashville,live around family and fix our

rheumatoligy department.

I'm content with the decision to raise the MTX up 5 mg.Still a far cry from

the 25mg sub q was on at 3 yrs old.

Love and hugs

Becki and 7 systemic