Sunday, August 28, 2011

Port Consult

On Thursday Emily & I went for her port consultation.  I suspected that we would make the 2+ hour drive only to have a 15 minute appointment.  I was right.  It's a nice drive, but it is long!!!  On the way up I told her to think about any questions that she may have.  I explained that, since it's her body and her appointment, she needed to speak up whenever she had something to say.  I purposely held back  :)  She did very well!!!  They first asked why she wanted the surgery.  She explained that her veins roll, it takes a lot of pokes, and she's tired of being anxious.  So, we have a date!  September 27th.  I'm not 100% sure of the details yet.  I know that sometimes insurance won't cover a med if it's a day early, and she'll technically not be due for her infusion until the 28th.  The said that if insurance won't cover it a day early, they can admit her overnight and do her infusion the next day.  If all goes well, the weekend right after that we should be going on a family weekend camp out.  I'm keeping my fingers crossed on that one.  I realize that everything is up in the air with my mom and her treatments.  She hasn't had her appointments with her oncologist yet, so it may be that I am needed to help my dad, but we'll see.    That's a whole other blog  ;)

Otherwise, things are reasonably great with her.  She's been taking the stairs more often than not at school!  She really credits the Rituxan.  She says that she can feel it working almost immediately.  Maybe it's psychosymatic, but who am I to tell her otherwise?  I'm just so happy that she's finally feeling some energy.  I'm happy that school is back in session.  It gets her moving more often than what we've been able to do for her.  We had her 2nd loading dose of Rituxan last week (I think).  We've been at the hospital almost every week.  At this point, I forget what we've done when.  She shouldn't need another dose for another 3 months!  That said, after this Wednesday's infusion, we should have a 4 week break!!!  Oh, I so need that!  I'm quite sure that she does, too.  I'm so grateful that we had such a great summer to make up for all of the torture that she's had.  Not that it's easy to watch; it's horrible!!!  But at least there's an end in sight.  We have a doctor's appointment for her on Wednesday when we're there for her infusion.  I hope to update more then.

Oh, and one last note.  My son, who has psoriasis.  He has been fighting it since 2008, just after Emily was diagnosed with JA.  Now his jaw is clicking.  It is likely TMJ.  I plan on asking our pediatric rheumy about it on Wednesday, too.  One of my biggest fears is that his psoriasis will turn into psoriatic arthritis.  I'm hopeful that this is just TMJ!!!

Sunday, August 21, 2011

Rituxan #2

I am really putting my faith into this medicine!  After hearing so many good things about it, I assumed it would be a good choice, but now I think we see some payoff.  Emily told me on the way up to the hospital that she was able to walk up & down the stairs at school.  She credits the Rituxan!  She also says she feels it right away.  I pointed out that maybe it was the steroid she was feeling, but she swears she knows the difference.  I believe her.  It was a nice trip up considering how early we had to be there, and she was in rare form while waiting for a nurse to come poke her.  When they actually came towards her with the supply tray however, she freaked!  She was very extreme yesterday.  She cried, screamed, hollered, & yelled for about ten to twenty minutes.  Two pokes was all, but they started in a hand that still had a bruise.  She didn't point this out to the nurse, though....  After that she was good.  We got there at 7:30 A.M., and we didn't leave until 5:30 P.M. or so, but it wasn't a bad day.  Three of our arthritis families were there.  :)  It was so nice to hang out and chat for a while!  I was exhausted enough in the morning to nap.  Em couldn't, try as she might.  She slept most of the way home, though.

I was able to talk to the nurse practitioner about the blood in her stool.  I showed them pictures, too.  (It's a sad day when you're taking pictures of your child's poop!)  They decided to increase her Prilosec to two times a day to help protect her tummy better.  Of course, it was the night of my mom's surgery that Emily told me about it.  I really wished that I could just shrink back & ignore everything, but I guess that's not meant to be.   We were at the hospital long enough for her to get comfortable enough to open her mind up enough to talk about the port.  She had one of the nurses giving her a "Port 101" tutorial.  She isn't as nervous about getting a port now since we've talked to so many people.  My mom didn't even notice that they had given her one.  Mom's is in her neck.  She says it doesn't hurt at all, and they only put hers in on Wednesday.   Oh, and her Pulminary Function Test came back normal!!!!!  I cried, that was such good news!

On the way back home we visited my mom.  It was nice and quiet, and cool to have mom all to ourselves.  I think that's all I can stay up for right now.  I'm soooooo tired!  But today was a good day.  <3

Monday, August 8, 2011

More Awareness in the Medical Community

I have had a lot on my mind this week.  Between the International Autoimmune Arthritis Movement's awareness campaign, & reading some posts in my various groups, the common trend has been how even the medical community downplays Rheumatoid Arthritis and related diseases.  From companies like Tylenol & Advil to general practitioners, the majority of people seem to believe that only "old people" get arthritis. 

There are only about 250 pediatric rheumatologists, and about 350 adult rheumies.  That said, there are simply not enough of them to properly educate their patients.  They have too many patients!  Here's an example:  My daughter's doctor is one of 5 pediatric rheumatologists in the state.  She sees the patients that are local, but also patients that have left their local rheumies for one reason or another.  How many patients does she see?  4000 kids.  About 1,500 of those kids are seriously ill, coming up for monthly or even bi-weekly infusions.  I can't imagine how many patients the doctors in the west have, where many states don't even have one pediatric rheumy.

We need to find a way to educate our primary care doctors.  Not to take the place of our beloved rheumies, but to help properly diagnose and care for these chronically ill people.  A mom in one of my groups wrote that her pediatrician truly believed that her child will "outgrow" her Dermatomyositis.  There is a 1/3 of the DM population that may only be affected once.  Given how small the population is (only 3 of one million children are affected) and the varying degrees of illness, as a very informed parent I think I would have been very upset.  He easily could have researched like I do, but he chose not to.  How many other doctors don't do their homework? 

Most RA diagnoses are of patients from 20-45.  Yet, at 36 my primary tells me that I'm too young.  I was shocked!  He also told me that RA in adults doesn't affect the same joints as children, & it's a completely different disease.  I do my homework, & I knew from years of talking to adult RA patients that he was wrong.  If my doc doesn't get it, how many others don't?  I don't want to criticize; I want to raise awareness.  Autoimmune Arthritis is often the first symptom of other, more serious diseases.  Still's Disease (systemic arthritis), Lupus, Connective Tissue Diseases, Scleroderma.  All of these diseases can kill, but how can they be diagnosed if your doctor tells you that you're too young to have arthritis?  How can we get them better training?  What steps do we need to take?  And how do we get advertisers of arthritis products to stop grouping RA on their OA products?  How do we get companies like Enbrel, Humira & Orencia to talk about the many children that are affected on their commercials?  We need to start considering these things, and come together to make change. 

PFT down & a surgical consult coming

This summer has been completely crazy.  Mostly good, mind you, but crazy! 

This summer has brought us to the hospital more than we had thought it would.  The current plan has us on the first 2 starting doses of Rituxan, in addition to her Remicade & SoluMedrol.  So, we did her Remicade July 6.  Since then, we have gone back up to the hospital twice- once for her new Rituxan, and once for Remicade.  The Rituxan was the one they messed up our time for.  Last week was her Remicade and Pulminary Function Test.  Because we're just a mess right now with this stuff, when the PFT was scheduled, no one thought about how the Remicade needs to be monitored & ramped up every 15 minutes, so they had to disconnect her for the test.  We really didn't mind hanging out, but the poor nurses had to stay an extra hour for us.  Had I realized, I'd have come in an hour earlier!  I guess it wouldn't have mattered much.  We had an hour wait for a chair, and it took 4 pokes for a vein that worked right.  Not a great way to spend the afternoon for her.  Again, the stress and anxiety that the poor kid feels is just unacceptable.  After the previous week's huge black bruise, even she is looking forward to the port.  I'm thrilled that she's happy with the decision, but I'm a little pissed off that we have to even consider this, & even worse, that it is a relief. 

She takes things in such stride that she seems to be at peace with all of this. I hope so!  She is so amazing!  We have talked in depth about the PFT.  I had requested it because of her asthma acting up around the time that her Remicade stops working, which is usually when we're lowering the steroids.  This has me wondering if the steroids are carrying her, if the Remicade isn't working because the systemic effects are starting to show, or if it's just a crazy coincidence.  I don't really believe in coincidences in general.  She knows that this was a hugely important test, and she did her best.  My proudest moment?  Instead of crying when they suggested closing the door of the test box, she said no and asked why.  Usually she panics & gets upset.  This was HUGE to me!  Perhaps it's because the tester was amazing!!!  She was a fast friend, and she had Emily feeling very comfortable.  I was very thankful to have someone that obviously works well with children.

Where are we at with this right now?  Well, next Friday we go back to the hospital for her Rituxan infusion.  We have to be there at 8 A.M.  That means I have to be up about 4 A.M. to get us there on time.  That'll be interesting.  I told them not to expect much out of me that day, like coherent thought.  The following week on Thursday we are to drive back up for a surgical consult.  Hopefully, two or three weeks later (I've lost track now) when we go back for her Remicade, they will place the port.  We have been told that it takes an hour or so, but they set it up so that it's ready for infusion that day.  This will work well because they say it may be tender for 2-3 weeks, but because Rituxan won't be for another 12 weeks, we shouldn't need to access her until the following month for Remicade.  I think.  We've talked about IViG if her immune system gets too low, but I'm still not really sure how that will work yet.  We've discussed several possibilities.  For now, I'm just trying to get the day after off... just in case. 

Unfortunately, the doctor won't be in for our next appointment.  We were slated to see her this past week, but we were out of the infusion room a lot for the PFT.  I faxed in a note along with the report, asking them to please call me to discuss the results.  I'm not sure that they'll be able to do that, but here's hoping.  For anyone that may know how to read this, please feel free to translate!  In my heart, I feel there are problems, but they can be helped if we get started quickly.  I can deal with anything as long as I know what we're up against and I can be pro-active.  One of my favorite mom's (THANK YOU for all that you do... especially just being you & loving me like ya' do!) told me that from what she knows, it's definitely off because the graph should be more parallel.  I know she at least has asthma.  I'm just not sure if it's her asthma or the start of pulminary hypertension.  I'm praying for asthma.  Asthma would be lovely in comparison.