Monday, January 14, 2013

Holding Our Breath,

The kids started school today and I have time to write...It's been a fast couple of months. The winter break was a good one for all...knock on wood...none of us in the Davis household has been sick. We went to a gathering where we were told that someone had MRSA and I couldn't get out of there fast enough. I contacted Remicade which informed me that it would of been hard for Bruce to overcome such an infection with the amount of Remicade that he takes. I try not to become upset...because, well people just don't get it...this flu season has been so bad. I worry that Katie will bring home something from knocked a lot of the kids down but so far we have been free of any airborne illness. Understand that Bruce got the flu which probably triggered his arthritis back 3 and a half years ago. Poor kid was down for 17 days... when he went back to school he was there for 1/2 days that first week it just drained him.'s January, a new year..and mom and dad are holding our breath. February is the onset of Bruce having a UC flare. We are very concerned. I wish it was easy to let go and hope for the best but knowing Bruces track record for the last two February's...ain't so great. 2011 sent Bruce to hospital and Feb 2012 sent him to the hospital for a hell of a lot longer and let's not forget the colostomy that he was preparing to makes us anxious. There is no preparing for this. As was told...if you flared last year it's a good bet that you will flare this year at the exact same time. If by chance he doesn't flare in February then his chances are better for not flaring the following February in 2014. Doesn't mean he won't flare, just means his chances are better. It's crazy that the body knows exactly when this will happen. No warning signs. No slow onset of symptoms. Mom I have a stomach ache and the next day he's bleeding. We can not prevent this. Although a Calprotectin test will check for occult blood in his stool at time of sample. There is just no way of we wait on pins and needles. They cannot tell us if it will be a shorter or longer flare. Really... the only way to really know of a UC flare is to do a colonoscopy Every Week for the month of February. The Calprotectin test is very good only for the time of testing...which would be the same for a colonoscopy unless it was done every week. We know that this flare cannot be stopped unless he gets IV therapy ASAP. Bruces last 2 flares were thought to be controlled at home with prednisone orally. We now know this isn't so because he becomes resistant and needs prednisone, 60mg IV daily. How long? We don't know. 1st time it was 5 days of 60 mg plus once home a very slow taper. Last Feb was 60 mg orally and a low residue diet to no eating before he went into hospital
because we thought we could fix it. Calm the gut take the prednisone and he would be ok. No, it's a bigger monster and it showed it's true colors last February. So this years plan... we don't wait...directly to hospital as soon as we see blood and hopefully we can get it under control. I have flashbacks of Dr.W telling me Bruce needs
a complete colectomy due to his refractory of the medicines, meaning nothing was working.
We have a new gastro dr at Nemours. I saw him at Cinncinatti Children's Hospital last
year. Dr W is fine at All Children's but 30 minutes away verses 2 1/2 hours away is so
much better for our family. If Bruce needs to go into the hospital it would be for gastro not arthritis. Dr N will continue to be our peeds Rheumy despite a terrific
doctor at Nemours. There is a comfort level with Dr N.. He was the first to diagnose
Bruce so leaving him would be hard for both Bruce and mom and dad.

Bruce has been in a flare since Nov.5th. With as much medication in him you would think that he would be doing well arthritically speaking as well as his UC under control for the upcoming month. Last year he should of never had a UC flare with the amount of Remicade going in him. I think it was 600mg every 6 weeks. We are now at 1000mg every 6 weeks and if he flares with UC...then what the HELL is Remicade doing...hubby and I are questioning this. Ok, so he doesn't flare except each Feb and we just deal or do we put a bunch of bad stuff in him for what? His Arthritis? That certainly isn't working up to par. But nobody wants to change anything at this time. Bruces new Gastro made me a little mad...he said maybe this is the best he will get...Throwing more medication at
both diseases might not be the answer. Well it's very easy to say that when you don't
have a child who is going through this. Bruce can not run but he does, he should not
play golf but he does. It takes him a week to recover. He takes regular naps up to 4
hours. He cannot lift his legs-off the ground due to weakness in hips/girdle.So is
remicade working? Not at 100%....maybe at 60% but were not doing a thing about it,
hoping it's a flare but really knowing he's reached his capacity on Remicade and no one
is comfortable with upping his dosage and knowing he has one more medication to try
and that will probably fail him in 4 months based on his track record. Doesn't build
antibodies...all meds just lose there effectiveness. So Bruce walks around with
stiffness in his back, weak legs, pelvis, hip/girdle area. But once again I do not have
a crystal ball and neither does any of Bruces Doctors. Love the doctors but hate the
I am doing ok...Voltaren Gel is the best. It works quite well for pain. My dr increased my MTX and I think that helps. Bruce has been given the ok to use it too. Mobic seems to work for me. We got our humidistat working and what a blessing...Both Bruce and myself feel a big difference. The humidity in the house is at 58% to 60%. 80% when it wasn't working. I highly recommend it. Honeywell humidistat works with your air conditioner. Somehow you attach it to the wiring of your thermostat...I think it's less than 40 bucks. If you can get do it. Your electric bill might go up a bit but its worth it. I've noticed my jaw is tight and not the TMJ type of tightness. Like a hinge is
hard to open up. My hands feel better. When I go to NIH with Bruce in April they will
do xrays, full body MRI and lots of lab work...hoping they will look at our DNA, skin
testing etc...
I might be repeating myself but I didn't know how to combine both blogs since one is a few weeks ago....well not really...just too tired to try to combine them... At least I'm honest...I'm ready to crawl into bed... Night night

Gastros, Devices, Flares and Ziti

A few weeks ago we met Bruces new Gastroenterologist Dr. Franciosi who saw Bruce back in May at Cincinnati Children's Hospital. He moved here to work at Nemours in Orlando. We liked him very much. Very thorough, good sense of humor which you need and easy to talk to. We won't be doing a colonoscopy on Bruce despite his stomach pains that come and go. The Dr thinks that Bruce also has IBS along with IBD. We watch him closely to make sure there is no blood in his stools by using a Calprotectin test which is very sensitive to pick up on any microscopic blood. Ya, insurance doesn't like this test, so once a month we will invest in this culture to save Bruce from having a colonoscopy which insurance "will" pay for at 100%. Doesn't make sense but we have to follow Bruce closely because most likely he will flare again in February/March. Almost to the day. They don't know why it can do this, it just does. So we are hoping that we can catch a UC flare early and Bruce won't go into the hospital. If Bruce flares it will be due to his UC that will put him in the hospital. Nemours is much closer about 40 minutes away. All Childens is 2 1/2 hours away. Bruce will continue to see Dr N at All Children's for his arthritis despite a great doctor at Nemours. Dr. N was the first to diagnose Bruce and there is a certain comfort level that I'm not willing to give up. So we will hold our breath for what may or may not be coming. It's very hard not to be anxious about a possible UC flare. It really can't be stopped.

Bruce was in a study for a company in Bethesda, Maryland for a few days. He tested a device that stores UC information. Like a diary. The diary will be part of a research study for a pharmaceutical company that is testing a UC drug on children. The current medication is for adults only and the 8-12 week study will determine if children can use it. The device was really cool. Looked like a phone and every night it asked Bruce a series of questions regarding his day and how he felt,symptoms and bathroom habits. This information was sent to pharmaceutical company so they can keep track of how medication will work on kids. They even asked for his opinions, what he would he would change to make easier. What a great idea to use for both arthritis and UC. I think some things get lost in between doctor appts. And it helps to see any patterns or problems and benefits on how your child is doing between Dr. visits. This was a big study in regards to accurately tracking information for the companies research. Hey Mom, I'm a Beta Tester!

Bruce is still flaring or the Remicade is losing it's magic. We are not sure. He is
tight in his low back and upper thoracic area and very weak in his pelvis. His
stretching exercises are hard to do. He can barely pull his legs up while laying down
since this motion has to do with the strength in his core. Muscle weakness is still a
problem as well as the Enthesitis. Both knees hurt and stiff in the morning. Both hands
are swollen across the knuckles. Cannot sit for any length of time and he tires
easily. Pain in chest is still there, so breathing exercises are important I know his
body is trying to fight this because he's taking naps. 2 to 5 hours every couple of
days. Last Friday he woke up around 7am only to go back to bed around 10 and slept till
3pm. That night he went to bed at 7:30pm. Too much sleeping and not enough activity
just makes things worse. It's wearing him out

I'm on my second month of Methotrexate shots. I think I don't get tired from the shots like most people but it's hard to tell because I have hypothyroidism and take my medication all at once which I'm not supposed to do but I do anyways. I hit a wall
everyday around 4 ish. I wouldn't hit this wall if I broke up my thyroid meds. What I
do get is a stomachache. It's just enough to be bothersome. I get this a day or two
later, not immediately. I've tried taking my shot before bed to see if this works but
no. I was hoping the ill effect would come the next night while sleeping...not!
It's just enough to feel blah for a few days and then I feel better only to take the shot again. This medication wrecks havoc on my body. Let's just say female problems do not go away. I do think the combination of Mobic and MTX has helped me and I'm grateful for this. Most mornings I wake up with overall stiffness but I don't hurt but there are some days I can barely get out of bed my shoulders hurt so bad. My hands do feel better
most days but other times the ache doesn't go away and I have a sharp pain in both thumbs. I made a big Pyrex dish of baked ziti and left it out to cool. As I was putting the dish in the fridge I dropped it. Yup, hit the hard wood floor, made a dent and ziti went everywhere. Broke the door handle of the fridge and had to clean it all up. My
strength is gone in my hands. Even pumping gas is a problem to hold down the lever. No strength. Hips hurt all the time, that never goes away. Sitting is such a problem for me. I sound like the meds are not working but they are. The pain is not constant. Im
getting relief and my hands feel better more often than not.

I'm writing my woes because I can't believe kids go through this. I'm in awe of kids who have arthritis. They push right through it. You have to. what I have learned is
that a family comes together. You become closer and work together. My husband helps me
out so much and Katie is helping me in the kitchen. Bruce even gets in there. I'm so
thankful for the good days that I have that the bad ones become manageable.