Monday, January 14, 2013

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.

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