Sunday, December 25, 2011
I think this is such a cute picture for a Christmas photo shoot! But it wasn't on Pendleton's site, it was only through their email, so I needed to put it here to pin it on Pinterest!
Charlotte's eye appt before Christmas showed one cell in her left eye but we aren't going to get in a fuss about it. Her labs showed everything is good with her liver (levels were elevated 6 weeks ago and so we were watching.... labs are taken every 6 weeks with Remicade).
6 year wellness visit showed Charlotte falling a bit off the growth curve (a little too tall for her weight). I have noticed that she's a pretty lean girl, there's no buffer between those ribs & her back or front. She's a healthy eater with a good appetite so the Dr. isn't too worried but would like to see her again in a year. I question if the blame can be pointed to arthritis? Drugs for arthritis? Or just who Charlotte is?
Our Christmas eve activity is to decorate cookies for Santa... and we let Charlotte have a few extra!
Tuesday, December 6, 2011
|Ellie & Emma getting ready to run with Emme & Carson|
|Getting some pre run candy canes from Santa|
|Friends Tate & Emme at their 1st JBR!|
Monday, November 21, 2011
Charlotte has finally stretched remicade to 6 weeks (2nd time/4times will be before Christmas). It took a long time just to get to 6 weeks after her hiccup this spring.
But all is going well now. And here's a day of remicade through Charlotte's eyes. She has to hang out for 4 hours, so I gave her sisters iTouch while she's sitting with her nurse at the kitchen table. See her remicade behind her on the big IV stand. I give her tea to drink, fluids, for her urine test that the nurse takes with her.
She has the sniffles before Thanksgiving, but is in great spirits. First cold in late November is pretty good for the weakened immune system Kinder at public school!!
Thursday, September 8, 2011
FDA Strengthens Anti-TNF Warnings
Two types of bacteria pose infection risks for those taking the biologics.
By Andrea Kane
9/8/11 The U.S. Food and Drug Administration, or FDA, is warning that people who take tumor necrosis factor-alpha blockers, also known as anti-TNFs or TNF-blockers, may be at risk of infection from the bacteria Legionella and Listeria.
After reviewing cases of infection in patients treated with the drugs, the FDA is strengthening the drugs’ boxed warning labels to include the two bacteria.
Anti-TNFs, a type of biologic product, are used to treat rheumatoid arthritis, or RA, ankylosing spondylitis, psoriatic arthritis, juvenile arthritis and several other conditions. The new warnings will be added to labels for infliximab (Remicade), etanercept (Enbrel), adalimumab (Humira), certolizumab pegol (Cimzia), and golimumab (Simponi).
Serious infections – from bacteria, fungi, viruses, mycobacteria (including tuberculosis) and other opportunistic pathogens – are a known risk of anti-TNFs, which can compromise the immune system’s ability to fight infections. Patients older than 65 and those taking other immunosuppressive drugs may be at greater risk of infection.
The added warning may help patients with these infections get treatment more quickly, according to the FDA. In the past, healthcare professionals weren’t always aware of the risk of certain infections, leading to delayed treatment.
“Any product we use to treat rheumatoid arthritis, because it affects the immune system, always has the potential for infection,” says David Pisetsky, MD, PhD, chief of the division of rheumatology, allergy and clinical immunology at Duke University Medical Center. “The difference is there are now two other organisms that we have to be concerned about. So, if a patient gets sick, you add into your thinking, ‘Could it be Legionella or Listeria?’”
Jeffrey Curtis, MD, director of the Arthritis Clinical Intervention Program at the University of Alabama at Birmingham, agrees. “All the FDA has done is called out two specific infections among all the other ones that physicians have been thinking about,” he says.
“The take-home message for patients is that they should not have new concerns or worries about the safety of these medications,” says Dr. Curtis, who is also an associate professor of medicine at UAB and a former Arthritis Foundation-funded researcher.
FDA records show that, between 1999 – the year after the FDA approved the first anti-TNF – and 2010, 80 patients taking anti-TNFs developed Legionella pneumonia, also known as Legionnaire’s disease, and 14 patients died. (Many were also taking methotrexate and/or corticosteroids, which also suppress the immune system.).
Twenty-six cases and seven deaths from Listeria infections – including meningitis, bacteremia, endophthalmitis and sepsis – were identified in patients taking anti-TNFs (in many cases with other immunosuppressive drugs). The FDA identified other fatal Listeria infections in phase II and phase III clinical trials as well as post-marketing surveillance.
In addition to adding the risk for Legionella and Listeria, the FDA is revising the boxed warning and “warnings and precautions” sections of all anti-TNF labels so that they contain consistent information about the risk for serious infections and the associated disease-causing pathogens.
The addition of Legionella and Listeria to the boxed warning won’t change the equation, say Drs. Curtis and Pisetsky.
“I don’t think that there is much data that meaningfully changes the risk-benefit profile of these medications,” says Dr. Curtis.
“For patients, it’s always a trade-off, because every therapy has its risks and benefits, and we have always been concerned about infection anyway,” says Dr. Pisetsky.
He adds that one way patients can protect themselves against infections is to be proactive and discuss it with their doctor. “Always decide, do you need a product or not? How well is it working? Is there another [drug] regimen you can take?” he advises.
“The tendency, for good reason, is once a patient is on a TNF-blocker, they stay on it, but one thing we are learning is that there are some patients who can be withdrawn safely,” he says. “Another tendency is to give TNF-blockers with other immunosuppressive drugs, so you have patients taking multiple products that are immunosuppressive. Do they need all of these?”
Patients taking anti-TNFs should pay attention to the risk. “Contact your physician if you have a fever and chills or a change in your condition,” Dr. Pisetsky says. “Always question if this is the flu or some kind of infection.”
Patients taking anti-TNFs should tell their doctor or healthcare professional if they are being treated for an infection or have infections that keep coming back, advises the FDA. They should read the medication guide and report serious side effects from anti-TNFs to the FDA’s MedWatch program.
Monday, September 5, 2011
Wednesday, August 24, 2011
But we added many an eye apppointment to the summer schedule and when they finally cleared last week, the eye dr gave us reprieve & said we didnt have to see her for 4 weeks! HIP HIP!
Carpe Diem the last week of summer!! And i just wrapped up my 4 page document on Charlotte that will go to the Principal, counselor, teacher, & PE teacher/music, etc.
Wednesday, July 20, 2011
Thursday, July 14, 2011
9.1.11 (she turns 6 on the 24th!)
9.30.11 (she's a kindergartner!!)
Remicade @ 6 weeks:
12.23.11 (Merry Christmas!)
Remicade @ 8 weeks:
8.31.12 (entering 1st grade!!)
Remicade @ 10 weeks:
8.2.13 (entering 2nd grade!!)
4 times at 12 weeks if all is going smooth by this point & then we are done (I haven't mapped that out yet, & probably wont for a few years ;)).
Keeping the Remicade at 200mg's & the Methotrexate at .6 mls each week (shot). Nothing goes very fast :) and we take it one day at a time! Last week we were able to head to the beach, the sun was out but its the Oregon Coast so its brrrrr cold! Writing her name in the sand is her favorite thing!
Saturday, July 2, 2011
But she scootered the entire three miles & today she woke up limping.
We are making her take it easy but, guilt, guilt, guilt. I feel awful.
It was a fun time, she enjoyed it. I ran with my friend Laura and her two kids & my girls scootered. We stopped at the 1/2 to get a drink at Starbucks & then turned around & went back. But it was just too much on her little legs.
It was a sports filled day. Maybe too much. Learning lessons. Feeling bad :(
Thursday, June 30, 2011
Monday, May 30, 2011
Seems to have become a habit, throwing up in the middle of the night on shot night. She constantly says her tummy hurts, its always been that way so hard to know on what level the tummy is rumbling. But lately, she's throwing up on shot night & so her dr. is putting her on 2 new supplements to help.
My note: Charlotte has been consistently throwing up on MTX night. She doesn't take folic acid but I am asking the Dr. if that will help. Anyone else experience throwing up after giving Methotrexate? (She's been taking it for 3 years now, but its been this last month that the throwing up has been happening). Thanks for the comments!
*We have always given Elsa folic acid, but she's never had experience of thowing up. Ask as soon as you can.
*Dakota started throwing up after mtx so we give her zofran before her shot and for a couple days following. That helped a lot
*OMG Erika! Charlotte is going through exactly what Kylie is going through!! Dr. E. upped her dosage from .8 to 1.0 and she reacted horribly. (Vomiting and nausea almost immediately and consistently for up to 3 days!!) We added Zofran the the second week after the upped dosage but didn't do it for long enough and she vomited the 3rd morning after injection night and missed school again. Finally, this week Dr. E. said to do the Zofran every 8 hrs. for the 3 days and that worked beautifully. She finally was vomit free this weekend!! I hope Erika can get teh same relief!!
*Wow. The EXACT same thing has been happening to Claire for the last month. She takes Folic Acid 3 times a week. Yes, she did have a stomach virus but that's over with. Still, every Friday 9mtx night) she's up at night several times saying she's going to throw up, and sometimes does. I was going to call her doctor today.
* We did the folic acid and have for a long time no relief for mtx. Now we have a GI specialist and she is diagnosed acid reflux and takes nexium
* The folic acid does not help Kylie with the vomiting and nausea. Finally adding ZOfran has helped wonders. I hope the doctor helps Claire, too!
*I hate to sound like a stuck record but 12% of the population MTX does not work and in a lot of people how it manifest itself is through throwing up. We had no idea Liam was in this class. We gave him shots for almost 6 years and it was not until the last 2 years that he thew up.
*Do you mean the throwing up is an indication that the MTX is no longer working? I'm curious since Ky just started throwing up from MTX with dose increase. But the increase has seemed to help her (knock on wood) because yesterday we went to a fair and she was able to stand for 3 hours and wait in a few lines for rides. She has not been able to do anything like that in a year and a half. It was the first time we did something like that and left the wheelchair in the trunk of my car.
*It can be but throwing up can just be a side effect. The only way to tell is to get the blood test done.
http://www.avisetest.com/Patients/Services/AvisePG.html it is exepensive it was just under $400 for it but our insurance paid 100%.
* we were given Folic Acid from the beginning & have given it to her dissolved in her drink 1 time every night/day. we dont skip any days,. she gets it Every day & has for the 4 plus yrs for side effects/symptoms as well as depletion,.... we only had the 1 incident of vomitting/fevers,.... for a few weeks & then switched to pills for a couple months,... but when eyes flarred again,... had to go back to the shots & fine ever since...... although I count my blessings because I know things happen with these kids so differently & randomly. I just hate that they need any of this!!! I spoke with another mom whose child switched to gluten free & some other diet changes & has been free for 5 years now..... may check more into this again.
Sunday, May 15, 2011
Monday, May 2, 2011
Sunday, May 1, 2011
Thursday, April 28, 2011
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.
Blazers need to win tonight!
Saturday, April 23, 2011
IS SHE REJECTING THE MEDICINE?
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!).
a) Enbrel (an at home shot)
Monday, April 11, 2011
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 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.
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.
Friday, April 8, 2011
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
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....
But the future has many drugs still in the game plan.... for quite awhile... BLECH.
Thursday, March 31, 2011
Friday, March 18, 2011
Charlotte, two weeks ago had the approx 6 cells. She immediately started on steroid eye drops every two hours, and two days later she had her remicade treatment + methotrexate. So two weeks later you would have thought business had been taken care of - Party OVER! GETS. OUT!
But we got one lingerer.... which is nothing to write home about, you can live a lifetime with one lingering. Heck you can live a lifetime with 5 lingering.
HOWEVER.... as the momma, i just dont like that there's one lingering at all only because she pretty medicated right now to do the business, why is one still sticking around?
On the upside, she's seeing 20/20, so it's good, no damage.
Now she's still doing her steroid eye drops every 3 hours for the next two weeks. So we will still walk around with a timer & her preschool teacher Ms. Erin is the BEST, setting her timer & then giving us a sticky note as to when they were given. We also have a rockin' babysitter who's been giving them as well. So Charlotte has plenty of angels around her, very thankful!!
Charlotte is an eye drop champ. I have even been on the treadmill, Charlotte will hear the timer, bring the timer & the drops to the treadmill, where I hop off, give a drop, set the alarm, give it back to her & hop back on my run. :)