Thursday, April 28, 2011

Avnet LPGA Classic / News

Avnet LPGA Classic / News

What a hero Kristy McPherson is to my daughter, and to me. She is HOPE!!! Can't wait to meet her someday!!

Drugs are smarter!

According to our Pediatric Rheumatologist:

The test results show that there is no evidence of HACAs and Charlotte had a generous infliximab (Remicade) titer (concentration) when measured, back on 4/26/11 (so that means its in her system? but just wasnt strong enough?). While we were getting blood work, we had her HLA-B27 tested & it was negative.

Currently we are scheduled for Remicade on May 13th (4 weeks). Pediatric Rheumatologist suggests doing 4 weeks for several infusions to see if that gets her back on track (before increasing the dosage). Asking Dr. Foster, the uevitus specialist we see in Cambridge & will see his thoughts.

We also have increased the methotrexate from .4mls to .6mls.

She is currently on Pred Forte drops every two hours with the ointment at night. Would like to wean this, but eye appt is next Wed, May 4th. DISLIKE THE DROPS.

Its good news.... Blech. But it is. I mean I dont want her creating antibodies towards remicade, that wouldnt be good if her body started getting too smart for us. But... I just dont LIKE the remicade process. Blech... get over it Erika :) So this is all good & so now if we go back to every 4 weeks (we did a year at every 4 weeks, back in 2008) & can get it back in control, that would be good.

Haven't heard yet...

Still waiting for test results to come back on Charlotte to find out if she is making antibodies against the arthritis medicine (remicade) & while we wait, we have some big events going on:

Blazers need to win tonight!
Wedding tomorrow. Watching the tape delay with my girlfriends over coffee & scones & a wee bit o'cake after we put the cherubs on the bus.
Emma's ballet performance! A full week of rehearsals on the big stage. She's so excited!

Saturday, April 23, 2011

Something is up....

This week Charlotte had her eye appt & there were 6+ cells in the left eye. She had just had her remicade treatment & methotrexate 5 days prior & is still taking a topical steroid eye drop, so there shouldn't be ANY cells there.
SO! What does that mean? Not sure. But the plan is:
Charlotte had labs done 2 days after her e
ye appt to see if she is creating anti-bodies against the remicade. At any time the body can realize that this medicine is an intruder. In Erika's rudimentary & very visual picture of things: Remicade is a protein cell that communicates to the white blood cells "DIE". Because her own protein cells are not getting that job done (they are having a coffee break, downing a few donuts. They are fired, we hired the REMICADE to step in & take over!).

AND IF SHE IS....???
And if she is rejecting the Remicade then we hop to another "biological" (TNF Inhibitor), aka protein communicator. The other meds in this camp are ones you might have heard of (thanks Phil Mickelson):
a) Enbrel (an at home shot)
b) Humira (an at home shot)

Remicade worked... until it didn't. And I have always had a love/hate thing about it.
Love that it works (or did), didn't like the process of a 1/2 day, being chemo, having a nurse or having to go to the hospital. Its the relying on a whole 'nother team to get it done. Blech. But you grin & bear it cuz it works. And it was. Working.
Remember that plan we had of weaning off of remicade, going every 6 weeks, then every 8 weeks? Then this stumble started on that 10th week and we are having to put it into reverse. So we are back to 4 weeks (May 13th). However if we find out she's creating anti-bodies, I assume we would halt the remicade & start something else ASAP. That's me guessing, we will find out next week.

Monday, April 11, 2011

1 cm

1 cm of difference in length between Charlotte's left leg to right leg.

Watching a physical therapist at work is fascinating! What an educational experience to watch her work: Having Charlotte play games but it was all intentional, looking for things that are wrong. There is no active inflammation so this 1cm should be the extent of it, and hopefully over time the other leg will catch up. I didnt tell the therapist about arthritis going to Charlotte's ankle & a wrist and she was amazed at her ankle flexibility. Saying that to continue having flexible ankles, one must have strong legs, so we need to encourage some tip toe walking, jump roping & running! (sounds like some cross fit fun!)
And it was good to know that the 1 cm in difference only has affected one area: the right hip flexor (the right leg is the longer leg) is very tight. Very, very tight.

And Charlotte has been favoring it. She has never sat criss-cross applesauce at school (its too painful on that hip). Who knew, I thought the knee had the damage & that's why, but its the hip that's too tight, it can't stretch down in that position. Talking with her swim teacher, she said her kicks aren't normal, and its probably because of the tightness in the hip for that range of motion.
And now... we sprint into action:

a) We put a lift in her shoe today. And will transfer it from shoe to shoe.

b) Also, we are going to do some stretching exercises for that right hip. Sisters joined in the floor fun tonight!

c) We are to try & redirect her side sitting into 1) Modified cross leg (cross ankles & have legs almost straight), 2) modified straight leg & 3) use small pillow under her bum to make it more comfortable.

d) She will keep up the swimming. And I would actually like to add more (maybe therapy swim).

e) I would love to find some therapy yoga for her as well.

We will revisit therapy at the end of the summer, see how Charlotte is doing with her hip after swimming all summer!

Friday, April 8, 2011

And now for those legs...

Since the arthritis started in Charlotte's knee, the body's natural reaction is to rush a lot of blood to the "injured" area. White blood cells come in to save the day, but in Charlotte's case, they just crammed up in a space that had no room for them. We took care of that by putting Charlotte under, draining all those white blood cells & then giving the joint a shot of coritsone to resume movement.
That was 3 years ago. And now its caught up to her & there is some length discrepancy in Charlotte's legs. The leg (knee) that was 1st diagnosed, was diagnosed a little too late (once there is swelling & lack of movement, that's when there is some damage done), and most of active arthritis was in that one leg.

Our Pediatric Rheumatologist said that the body usually evens itself out over time. That we should keep an eye out if Charlotte doesnt extend her legs when standing still. 5 year olds stand still? Who? Where? (smile!)

I am regular patient of my favorite Chiropractor. I know that sometimes my body can get out of whack from exercising and my body will compensate until finally I feel that...Oh right there! UGH!
And I just wondered if possibly Charlotte's body could be doing that as well? You know, compensating for one leg being slightly longer than the other one? And maybe she doesnt know it, and what would she know about pain? That girls pain threshold is higher than many!! I could see her not noticing... and maybe its nothing.

But that's what we will go check out. I am taking Charlotte to a physical therapist on Monday morning. These folks see other children with arthritis, so they are knowledgable about the disease & what to look for in Charlotte. This may be or may not be something, but I thought we would just check it out because if there is one thing that I like, its trying to be ahead of this disease rather than reacting to it. Whatever we can control is a good thing.

Thursday, April 7, 2011

Bump has turned into Moguls

Charlotte cant seem to get these cells out of her eyes even with topical steroid drops.
She has been on the same amount of medicine (remicade & methotrexate) since she was 2, so she's growing & evidently this amount or the frequency of this amount isn't holding it.
New game plan is:
a) Doing remicade next week (6 weeks instead of waiting for 8)
b) increasing her methotrexate (shot given at home) from .4mls to .6mls
c) see the eye dr in 2 weeks, cells be gone & start tapering drops.

Last time we hit the "bump in the road" I mapped out the remicade and it took Charlotte into 1st grade (2 years from now). I have learned my lesson that I wont be forecasting out past a year....
Dr. used the words "Medical Remission." I didnt even see those words until my hubby pointed them out. I am so fixated on the "plan" - so she WAS in medical remission, but not anymore. Gotta get back to that point.

But the future has many drugs still in the game plan.... for quite awhile... BLECH.