Saturday, November 10, 2012

Moms Rheumy Results

Well I had my follow up appointment yesterday with my Rheumatologist. I really never thought I would say that for myself. Ob, Internal Medicine, endocrinologist...just never thought about it for me until last month. I was hoping that maybe what I have was a virus and I could stop taking the Meloxicam. I kept saying...tomorrow morning I will wake up and my hands won't hurt and I will get out of bed not looking like a 90 year old woman. I keep apologizing. I'm trying not to complain. My back and my butt (SI joints) I can live with...even my shoulders. It's just hard when it's your hands. I have no strength. At night I get so stiff in my hips and low back. I'm still walking about 3-4 miles a day. That's even harder because I don't want to. Im so tired. Parts of my feet hurt that have never hurt. All this goes away after moving around and I really do feela bit better. It's only when I stop. The ache in my hands and wrists never leave. This doesn't throb and it's not tender to touch the knuckles, well just a couple... I can't call it pain..more of an ache..deep inside and it moves up into my wrists. Its more annoying than anything else or if hit my hand on the side of a table. I do have pain when touched/pressed around hips, shoulders(tendons)and buttocks. A gentle squeeze of my lower back, butt, hips and Achilles and I jump. So the tendons and muscle inflammation is probably a product of enthesitis. I swear I thought it was due to walking.

So my Dr comes in and tells me I'm in the same category as my son...nothing is elevated but my radiologic images tell otherwise. I have erosions to the distal IP joints in both hands and sclerosis of both SI joints more prominent on the right. I have mild degenerative changes primarily to L5 to S1 facets. The Dr thinks I have rheumatoid arthritis because how fast it came on... but both pinkies are tender. My right pinky more so at the first knuckle below the nail. She doesn't think I have psoriasis because I don't have any spots...but both elbows will itch at times and cause odd looking markings... There is a good possibility spondylitis due to the enthesitis and both heels and achilles hurt. At this time she not gonna say. She will wait. It can be a bit confusing that my labs are very good. There is always one that comes up odd...abnormal protein band 1. I dont think Im supposed to have any and I tested high at 0.3. Ya...I dont know. Im trying not to read into too much...I still am wondering about testing positive for scleroderma. Sed Rate is 13 and CRP is .70 so all within normal but its so damn hard to tell and it takes time. Lets play the waiting game. Im glad that she is progressive enough to start me on medication. she is very nice and Im quite pleased with her. My husband wanted me to go get a second opinion. I would if this was the first time I was learning about this but I know how it goes and I know how I feel and I know what shes talking about. If my back gets worse then I will end up going to see a back Dr or someone who specializes in whatever we find out I have. Hopefully in the near future. There is a good Dr at Mayo Clinic whose specialty is AS. I will go see him if I go in that direction.

So I am on MTX at .60ml injections weekly for 2 weeks then to .80ml weekly. I started yesterday and Bruce and I did shots together. I see the dr again in 6 weeks. The Meloxicam is working...I think it works for my back and SI joints but my hands/wrists get better around noon and then comes and goes through out day. I think the Meloxicam is taking the edge off but it's really hard to say. No wonder Bruce doesn't know how to answer sometimes when we ask questions and expect him to tell us exactly how he feels. If I can't describe it, how can he. Sometimes there is just no exact answer.

Bruce is still flaring...we are deciding what to do next. More Remicade or do we move onto Humira? Thank Goodness for Anthony and his massages. For Bruce this really helps to loosen up the back even if it's only for the time he's there.

Friday, November 9, 2012

Proprioception... Things you learn from your PT

Normally I don't find time to write as much as I am writing, but information keeps coming at me that makes me do research. So I thought I would share. Maybe others have heard of this and its no big deal but I find this fascinating and worrisome.

I took Bruce to his PT yesterday and he went from doing well 2 weeks ago to becoming inflamed and walking in with an air-cast on his left foot. I looked like hell, my hands hurt so bad. It was just funny..Yes Funny Haha because we just looked a mess. I had so much running through my mind yesterday plus I had to do the laundry, sweep the floors and paint the house...Just kidding on painting the house.

Anthony, Bruce's PT listened about Bruce's constant falling. We then moved onto his back becoming stiff throughout the day. By 3 pm his back was tight. Last night he slept in his anti gravity chair (yes the outside lounger) then moved himself to his bed. Anthony looked at his ankle and felt that it wasn't fractured or broken but the constant rolling and tripping has messed with his tendons. He cannot flex the foot, it stays at 0 degrees. He said that the constant falling will probably continue and then you get into more trouble and more problems with the ankle. He said to keep the boot on for 2 weeks because hes hurt the ankle plus with the arthritis/enthesitis we don't want that area to become even weaker. He did say that he thought he had proprioception. I have never heard of this word. He explained that the word means sense of perception of the relative parts of the body. It is knowing where various body parts are in relationship with how they are moving and how much energy is being used to move it. Specialized Nerve Cells called proprioceptors are found in large numbers in the tissues that hold joints together (tendons, muscles, ligaments, fascia). Propreceptors sense things like the amount of stretch, movement and pressure of or on these various tissues. When the proprioceptors are stimulated by stretch or movement, the nerve movement is fed to the brain via the spinal cord and nerve system. When in the brain it is integrated into something your body can understand. This is continual and thus your brain interprets the information and sends the messages back to parts of the body over motor nerves. When this system doesn't work properly a lot of problems can arise. Maybe this is why Bruce keeps falling.

Every time a proprioceptive nerve ending is not being stimulated usually due to a loss of normal joint range of motion, 30 returning motor responses from the brain to the body are not being stimulated. This causes degeneration of the restricted joint and thus causing loss of normal joint motion. This is a big problem in Juvenile Arthritis and Ankylosing Spondylitis and kids with lower extremity arthritis. So loss of range
and balance causes proprioception.

As strength and balance are related, children and adults with arthritis and lower extremity arthritis need exercise that enhances balance.

Bruce cannot stand for a long time...but put him on one foot and he is all over the place. He has impaired balance. I think I was in awe of my PT.

OH I did borrow some of what I wrote, ok most of it. It was a mouthful. My PT has been working with Bruce on balance. His left leg is much weaker than the right so we will try to build that muscle, fatigue and balance as we progress forward and hopefully the left ankle will get stronger.

I thought this was very interesting...I don't know if it means anything for Bruce long term and will try to gain more knowledge of this. This also can be due to sensory processing issues which Bruce doesn't have. I only read about proprioception in kids who have Juvenile Arthritis and Ankylosing Spondylitis. The swelling and inflammation have more to do with this for Bruce. Bruce doesn't swell much but there is inflammation which makes those neurons not work properly. Just another piece of the puzzle.

Monday, November 5, 2012

Here We Go...Again

I cant believe that we just left NIH and that Bruce is starting a flare again. Its been 15 days since his last Remicade infusion. He has been in good shape except for his left ankle. He has been falling lately and or his left ankle has been rolling out from underneath him. He had a full body MRI on the 2nd and he had fallen down some stairs that morning. He also fell a couple more times after that and a few more times before that... The MRI showed no inflammation. He does have swelling around the Achilles, you can tell by the lines in the back of the heel. I gave Bruce Katie's air-cast and he said it felt so good to have it on. We see the PT today at 3 pm. Anthony said he will assess the ankle and we will go from there. I got a sneaky suspicion that this isn't all about rolling of his foot. But at this point my head is spinning because I cant get my child ahead in the feeling good department. Well that's not true. OK he has felt better for a few weeks. but that's it. I really thought that the MTX injections were going to be the save all. I think at this point you hope anything will work. I thought that going from the oral to the MTX injections would be the reason why the Remicade wasn't working as well. I even gave the go ahead despite the brain fog. Did I really think this was going to help? Well NO but I was hoping. At this point in the game anything could help or not. Obviously the latter.

Bruce woke up this morning and put the air-cast on. He tried to apply pressure to his left foot and nope. Yes I know a sprain takes awhile to heal but this has been going on for awhile now. The PT saw that the left leg is extremely weak. So it would make sense that the ankle as well would be weak. I just don't think its due to rolling but its mostly the arthritis. The rolling just made it worse. I think arthritis kids have so many aches and pains that new joints or new aches take over and they don't feel the dull or constant aches that they have due to there tolerance to pain. Did that make sense?

Bruce got up very early and decided to do his schoolwork. He has really been on his own and I'm proud of him. I had noticed this morning that he was getting up and down from his chair. Constantly!.He was excited to tell me about something in history when he cracked his back without realizing it. I didn't say anything because, he will tell me when something is wrong. About an hour later he says..."Mom, I cant sit down. I'm uncomfortable. My back isn't stiff but I feel like I cant sit." I could tell he was upset so I asked him if he wanted to go for a walk and he said yes. He asked if he could hold my hand and I knew he was upset. He said his ankle felt good in the boot. He then asked about him making antibodies towards his medication. If he doesn't make antibodies then why doesn't the medication keep working. I told him I didn't really know but that the body can build up a tolerance to medication and after a time you need more. I asked if his back felt better and he said that it was better while he walked. When we got back home he said he would try his anti gravity chair (the outdoor lounge chair that distributes his body weight). He said his back felt better and he told me he was cracking his back without even realizing it. Its now his whole back not just the lower part. This started with the last flare. His knuckles too again feel better when cracked! I had watched him do it but really thought it was nothing until today when he has done it so many times.

I called Dr. N and sent NIH an email. I cant believe we were just there. He was fine. So is the Remicade not working? If NIH saw Bruce would they of been able to see a difference in him? Probably not yet. Can we catch this in time instead of watching the downhill progression Bruce has to go through. I honestly think that we have increased his dosage of any of the meds hes been on because they stopped working... not because he was flaring. This is scary. Giving prednisone only band-aids it and we have to give more medication 2 weeks after the ending of the prednisone taper.

This is his usual pattern. Back starts to feel uncomfortable and cant sit for long periods, then for short periods. will crack back to get relief. then he cant stand or sit and the back is so tight it no longer pops. Then his hips and girdle become weak and inflamed. Back becomes inflamed. His knees hurt and he starts to shuffle out of bed and around the house. Then hes unable to stand and hes back in his wheelchair. By this time his body is so weak and stiff. Nothing helps the stiffness. We tried it all. I feel like I'm doing everything possible for my son but my foot is nailed to the floor and I'm just going around in circles. So its either upping the Remicade which both Drs are not comfortable with or Humira. If Humira follows the path of Bruces previous medications, we are in big trouble. I have the Ulcerative Colitis to worry about.

I'm at a loss of what we do next... I let my guard down so I'm mentally not prepared.

Sunday, November 4, 2012

Results From NIH

I was really hoping that every single question I had was going to be answered when we visited NIH in Bethesda, Maryland. But sadly this is the reason why the good doctors are doing the research..,to get more answers. You see there is just not enough information on kids who have Juvenile Spondylitis. I was just really hoping that they knew of some new procedure, drug, diet or anything else that would help Bruce. I was told there are a few more drugs in the pipeline but as of right now...nothing for this type of arthritis as well as nothing for kids.

Bruce was seen by a research Dr who took all his information. Then he was checked all over from jaw to Achilles. The Dr then took a pressure gauge and pressed on every joint and around each joint. He then checked for inflammation in every joint. He had mild swelling in his left Achilles and 1st and 2nd knuckles of both hands were swollen. They did a full body MRI which took about 1 hour. They took 15 vials of blood and a DNA test. We then were seen by the gastroenterologist who spent 2 hours with us. She told us that you can not have both UC and Crohns. Which will be an interesting conversation with the Dr who said you could. Bruce may test positive for Crohns but its a false positive but she said unfortunately that he would have to flare again to see the bowel activity and that is a very good possibility because it normally happens at the same time every year you flare for UC. If you flare in Feb of last can bet that you will flare the following year...almost to the day. Why? They don't know. It just does. So we will be on the lookout this February for Bruce. It will be his 3rd flare if he flares in February. They don't know if his flares will get better or worse. Its really such a sketchy disease...especially when you throw the whole arthritis into it. She suspected that eventually a decision would be made to remove the colon. As much as I would like to think this would not happen the possibility is always there. How do you fix something when you don't know how its going to present itself in the future. She was very nice and she would like to follow Bruce and see him the next time we are to come back.

After the gastro Dr, came the research team to discuss there findings. His whole body MRI showed no inflammation. Which is odd because both CT and MRI in the last 11 months showed edema of the bone-marrow and narrowing or thickening of the SI Joints. But the Dr thought this was due to the amount of remicade Bruce is taking and that its every 3 weeks and its helping to keep the inflammation down. His diagnosis as of right now is Juvenile Spondyloarthritis. They will not diagnose you unless they see physical evidence on X-ray, MRI etc. Even though it was there it wasn't there when they looked at Bruces recent body MRI. What he thought was that Bruce has had a lot of Enthesitis...which is inflammation of the joint capsules, ligaments and or tendons to the bone. It is classic of Anklosing Spondylitis. There is tenderness above and below each of his joints that are affected. This can cause extra bone formation thus resulting in fusion to the tendons. Luckily this doesn't always happen. Sleep has a lot to do with the body helping itself, so they had recommended a medication for sleep. When the body is constantly in hyper mode due to pain or inflammation you just don't get a good nights sleep which can diminish regeneration. So that should be looked into as well as reconditioning, which should help his weakness of his left leg. They know this is hard to do. Fatigue and flares come and go but its important to try and very important to stretch. The Chostochondritis is probably due to enthesitis setting in to the chest so breathing exercises are important. I am thankful for the exercises we have done, they really have helped.
We talked a lot about Humira...that is our last medication to try. They do not know why Bruce needs an increase in meds or a change in meds every 3 to 4 months. He doesn't build up antibodies...but they were going to check that again from the lab work. What they do know is that the meds loose there effectiveness. They didn't know why Bruce has night sweats so bad that I change out his pillow. They suspect... but don't really know. The one thing we have to be careful on is the healing of the enthesitis...which to be honest nothing has ever helped that. Bruce has always had that. But this can cause a buildup of scarring. But what the hell can I do if nothing helps the enthesitis. So we will try sleep. Bruce doesn't sleep well, which I found out since we all slept for a week in one room. He tosses and turns and just cant get comfortable. Bruce has problems with the hips and that can be a bit worse for someone who is going in the direction of Spondylitis. They would like to see Bruce in 6 months and follow him. They would really like to see Bruce when hes in a flare. I know that it would be tough on Bruce but he is willing to make the trip for them to check him out. It comes out of your pocket but all the labs, MRI and the drs knowledge are free. They want to get a better understanding of this disease. The drs were great, very thorough, and had all the time in the world to answer questions.

Overall the trip was successful. We have research Drs that are on board with Bruce's doctors. There is no cure for this illness but by being in this research we are able to get a better understanding. I wish there was more to know. There isn't. A woman I was talking to was shocked to find that there isn't a cure. She didnt understand that arthritis is an auto immune issue and that your body is attacking itself. It was hard for her to understand...Its really hard for all of us to understand.

Wednesday, October 17, 2012

Mom has Joint Pain

Well I wrote a very long blog this morning and I have no idea where it went. So to make this a bit shorter. I haven't felt good lately. Very tired for the past couple of weeks. Sleeping in late and doing nothing around the house. Had a stomach ache too. Went to my Dr. last week because I have been waking up with joint pain in both shoulders, elbows, wrists and hands. My knuckles across my hands and middle of fingers hurt. My pinkies both hurt, right one more at the first knuckle. I'm very stiff when I wake up in the morning and when I go to bed. Mornings are worse. I start feeling better around noon-1pm.

I have had lower back pain for the past year and a half. Got a new bed, didn't help. I really just thought it was from walking so much. 3-5 miles will do it. I thought my gait was off or my shoes were too worn. Thought it could be my age.

I got my lab work back. Everything was normal except I tested positive for Scleroderma. I found out today that testing positive for only this disease doesn't mean you have Scleroderma. Doesn't mean I don't have it either. Have to look at all factors. I had a rheumatologist appt. today. She was nice. My lab work wasn't enough so she tested me for a bunch more things. I was taking Celebrex for the last week that didn't help as I have gotten worse. Meloxicam is what she has put me on starting today. She is concerned with how long I have had lower back pain and SI Joint pain. I had X-rays of my hands lumbar and, SI Joints. If you push on lower back it hurts as well as the SI area. I have Raynauds and this is a concern because it goes with the Scleroderma diagnosis.

I have to see a Gastro soon. She needs to see if my stomach pain is contributing to my joint pain plus I am having trouble swallowing food sometimes. I need to take one thing at a time. Today was just gathering information. Next week we go to NIH for 8 days for Bruce and then I don't go back until mid Nov. A bit worried that the anti inflammatory won't work and I will be stuck with the pain and stiffness during this trip. I don't have a lot of strength in my hands right now. So much you do with your hands. Rolling luggage,rolling Brucie in wheelchair, trying to make dinner can be frustrating. Holding a fork makes my hand ache and very tired. I noticed today that my hands are a bit jerky when I write. I've also been clumsy and I fell in a parking lot...ya on both knees.

So this was a shorter version of the very long blog I wrote this morning. My aches and pains in my shoulders and hands wakes me up around 4-5 am. I did do stretches with my son this morning and that does seem to help. I'm a lot slower in the morning. Can't seem to get started. But, I'm Mom and people are relying on me and this really helps because when I keep moving I fell better. It's when I stop that I pay for it. So keep moving forward!

Sunday, September 16, 2012

Cincinnati Children's Hosp. Gastro Assessment

Well I finally got my assessment from the Dr at Cincinnati Children's Hospital. It was dated May 31, 2012 and I just got it. I can't blame anyone because he was moving to Florida. So he had to wait for his license blah blah blah.

So Bruce went from chronic proctitis to severe chronic pan colitis. His colon has improved to only mild, microscopic colitis. His recent endoscopy showed mild focal ulceration in the duodenum and focal duodenitis which is most consistent with a steroid or NSAID/Cox-2 related far no upper tract GI disease however, Bruce has been found to be ASCA positive on 2 occasions that is more often associated with Crohns Disease.....but a positive ASCA serology can also be found in about 12% of patients with ULcerative Colitis. Oooh there's always a but or a may or a might! Nothing definitive.

The director of Pediatric General Surgery and IBD surgeon discussed that Bruce does not need surgery at this time but would need to be reevaluated should his body decide to become refractory to medications and steroids like his last trip to hospital. It would be a 2 stage procedure for a ileoanal anastomosis. They also explained that 5 to 10% of patients who undergo colectomy for UC may in fact have Crohns Disease.

Bruces clinical course is a bit confusing from onset of proctitis to pan colitis while on Remicade and then becoming better after weaning off of steroids..there are some other factors involved...needing more time for steroids to work, an NSAID/Cox-2 reaction, a 5-ASA reaction among the possibilities.

So...basically we have to wait for him to flare and see if it's due to lack of response to remicade, stop 5-ASA...then to look at the possibility of pancreatitis with the next severe flare. If all those are checked out and he still has bleeding that is not responding to any medication...including Humira and 6MP a colostomy is inevitable. There is a chance 7 to 10 years later of having cancer if colon continues to flare...the younger you are the more susceptible you are.

So...I think i pretty much understand this assessment...once again nothing set in stone and that's the hard part. He was put on Celebrex in December and in February he
started bleeding. Well he's been back on Celebrex so we shall see what the next couple
of months hold. He still is on the 5-ASA (asacol)as a maintenance drug to prevent he really needs the meds he's taking...if we take the Celebrex out he started hurting and am a bit concerned that if he goos off maintenance of Asacol he will start bleeding. So we are doing exactly as we have done before except for the shot Bruce gets of MTX. It would be very odd for him to flare being on so much Remicade every three weeks. Its a wait and see.

Saturday, September 15, 2012

Trip for Research

Well it sure has been a long week....with the increase of Bruces Remicade to 500 mg every three weeks and his MTX injections....(he did it all by himself...YAY Bruce)...he went down hill fast and needed his wheelchair cuz he was unable to walk...then by Tuesday he was getting better. Thursday night he said he felt very good like a 3...the stiffness in the upper back was gone but his lower back still is stiff. We had physical therapy on Tuesday to work on weakness in the hip/girdle area.we have been doing stretches for Anklosing Spondylitis and I feel that this has helped him greatly..well as I'm writing this I'm thinking...well if its working why did he go downhill....nature of the beast...he gets worse before he gets better. Bruce wasn't in his wheelchair long this time. PT says that any stretching will help. So pool and stretching will help...and I saw results.

We went for an MRI on his SI joints on Tuesday....was a bit afraid of the i didn't pick up the report until Thursday. Bruce has periarticular sclerosis along the SI Joints on both sides. This is not good. I called the radiologist and he said it's uncommon to see this in an 11 year old boy. Normally it's in an older adult from the ware and tear on the body... there is narrowing in both SI Joints. This is because he has arthritis in his spine. In December we had an MRI of the lumbar area...this showed inflammation and
fluid along the left SI joint and i have no idea what this means...annular fissuring? Forgot to ask that one. When this happens fusion can take place, but why is it happening in a child of 11. And it seems to be progressing. UGH!

This whole week I have been on the phone with National Institute of Health. Bruce is a candidate for research. We leave at the end of next month.'s a little scary to put your child in one of these studies. It's called a natural research. A doctor studies kids like Bruce for years and then works closely with his doctors. It's just getting another chief in the mix. Juvenile Spondylitis is not common among the Auto Immune illnesses as well as having Ulcerative Colitis to go along with it. So when were up there a lot of procedures will be done and hopefully some won't have to be done because they are scary...I get scared just thinking about it. Skin biopsy, joint aspiration, bone marrow aspiration..they get into the genomes and DNA and are trying to figure out why it's coming up. They will check my daughter as well...I also see if there is genetics playing a role in this... as well if it can be passed down to there children. The study will go on for years if we keep up with it". A lot of times these kids are not followed for a long time...leaving town, college, the more kids they have to watch over the years the better understanding they have of the illness and how it will progress....he will be checked out by a Gastroenterologist, Pediatric Rheumatologist and an Ophthalmologist. We fly up there for 4 to 7 days. I'm just so happy that he will be watched's the way I look at it. Plus, if this can help prevent another kid not to have as much pain as he has been through. I'm for it. It's a puzzle and I'm thankful for being a part of this research...even though I'm
scared as hell. Bruce on the other hand says....Hell Ya...let's do it. Our peeds rheumy Dr N set this up and I'm grateful.

I am so thankful that I have these medications that can make him feel somewhat normal, except for the exhaustion from the MTX and the very bad ulcer in his mouth. He feels so much better that he doesn't care about the brain fog...I try not to worry about the amount of crap I'm putting in his body...but what choice do I have. I try not to worry about the future...spinal fusion, heart problems, what life will hold for him in the
future...with this research maybe will see a rainbow.

Sunday, September 9, 2012

Mom Stuff, More Med's and Still No Relief

Since February I have been very quiet. I stopped Facebook, the games were killing me and taking up a lot of my time...really...I'm 46 years old and can't believe I could get hooked on a game...that cost me money. My hubby and kids thanked me. There lucky they got just consumed me. I've also been very quiet with friends and my family. Well not my family, I haven't spoken to the parents in 6 years. They have no idea what our family has gone through and that is a very good thing....I can't please them which is what they want and think if I'm doing something correctly in there eyes. They are very cold...and play games..I know they would not give the kids there meds if needed because they think they don't need them.Huh! They would not agree with all that Bruce has gone through and they would also think that it's all my fault. Well he doesn't eat veggies or you kept the ceiling fan on when he sleeps and I think God does things which was hard on me to basically drop my parents from my life. I did not do this of my own free will. They took my daughter one day to St Augustine for the day...unable to get in contact with them for more than 12 hours...because they don't have to keep there cell phone on for anyone...they told me this. I had no idea where she was... they are both in there late 70s... This is how they did things. Had a huge blow out with them and then I was done. 40 years of shit! I think my life growing up was so dysfunctional it's almost funny. Thank goodness for therapy. Now I feel sorry for my parents. I'm so happy that they are not around...isn't that sad. I'm sorry I can't please everyone...I stopped being the good daughter who always did what they asked and expected of me...but they crossed the line. Having your grandchild with you is a privilege. They had no boundaries. They live in a big house with no friends or family and I think they like this...well I'm sure of it. They have never gotten in touch with me which just explains them even more. I don't know of any parent who would not try to bridge the gap between themselves and there children and there grandchildren.I stopped doing this, I just don't have It in me to be the fixer all the time.
So there you have it... I moved here to be close to my family so my kids could have grandparents... So much for that! Funny thing...both my kids don't miss them. It was always so tense when they were around. This January will be six years since talking to my parents and I think this was done so I could put all my efforts into my family. My duty is to my family and have no bad thoughts of how all turned out. I can't try to fix other people's problems, although I do try to help when needed. I post a blog because
of it being a useful tool and to see what others have done to help there children get through this awful disease.

Now onto Bruce...over the past couple of weeks I have met up with a few Drs. Orthopedic
back surgeon, a physiatrist, pain management specialist, rheumatologist and Dr N at
All Children's. Over the past few weeks Bruce has had a lot of stiffness in his
back...but up his T3 to T5...normally it's in his lower back...which it
is, but now it's up his whole spine... tender in his hips, pelvis and well his whole
girdle. He is extremely weak but can still walk. He is walking on tip toes because
the pressure/tightness in his back is pulling on his hamstrings and making his Achilles
tighten up which is why when walking on toes feels better to him. His ankle flexion is
almost non bendable due to the inflammation. The physiatrist said his body is so
inflamed and his whole back is so tense it's in need of some major OT and PT therapy.
His whole pelvic girdle is just weak and was wondering if he had some bone loss as
well as both upper leg muscles are atrophied. She suspected juvenile spondylitis...if
it walks like a duck and looks like a must be a duck. The Ortho surgeon
won't call it that because he sees no changes on the xray. But Dr N suspects more.. He
already has a narrowing at the SI we will do an MRI as a baseline.

We upt his Remicade to 500mg every 3 weeks and is now on MTX shots again. 3ml and increasing ever so slightly. Bruce gets brain fog on the MTX or as Bruce put it he's gonna be as dumb as a puppy...which we laughed at because well that's funny coming out
of an 11 year olds mouth... dr N says we will do it slowly to see how much he can
handle and then drop it back if he gets as dumb as a puppy! Sorry but that was funny.
A bit worried about the amount of Remicade he is going to get but we have no choice.
We are currently on 200mg of the end of the month his dosage will be upt
to 400mg of Celebrex...were gonna see how the MTX will do and the new remicade dosage
first before increase in Celebrex. He had his infusion last week and so far nothing
has helped him...we tried flexeril to loosen back but he uses it for sleep, which has
really helped. Sleep is so important. Nuorotin (Gabapentin) was tried but it caused
his stomach to feel bad and we absolutely can not have that. We are already worried
about the increase in the NSAID but we have no other choice. If he is taking that much
remicade and he gets a Ulcerative Colitis flare were in big trouble...the thought of
him having his colon removed is always looming over our heads. We check for occult
blood in stool through the lab instead of a colonoscopy every month...Yeah...every
month. We may be heading for a colonoscopy just because Bruce has said his stomach
feels sometimes like it did during a UC flare. If the remicade stops working we really
are screwed. I know Humira is out there, but we are approaching our last medicine that
would help his UC and Arthritis. Which leads us to NIH.

National Institute of Health is on board in helping Bruce so we are making plans to go to Washington, DC.

The hard part is that we are unable to give him relief. I know remicade can help after about a week increase. He feels worse since the remicade increase so maybe that's a
good sign. I can only hope. As of right now, he can not run,he has so much fatigue or
be active except in a pool. This we do every day. I think it has helped...his exercises
from Dr. Kahn who is a guru on Anklosing Spondylitis ( he has it) has helped as well.
You really need to be careful of his breathing...with AS there is a tendency to have
smaller lung capacity due to rounding or being hunched. We think this is not
chostochondritis but from the spondylitis.

Bruce starts PT and OT this week. Once again he never complains. Oh his lower lids are still cemented and we are still putting antibiotic drops in them. Negative on
labs...thoughts of another autoimmune disease is still there but in the back of my mind...cuz ya just don't know! He's seronegative....

Thursday, August 16, 2012

Decisions To Make

Well...we finally had some normalcy this summer.  Bruce got to go to golf camp, we went on a small vacation to the beach and Katie got to be on stage at the King Center as Gertie in OKLAHOMA! The kids didn't mind going back to school on the 13th.  Homeschooling is the best.  My gut told me to make the decision a few years ago...  and I'm glad I didn't ignore it.

Bruce was tested for Sjorgrens about 4 weeks ago and the lab tests all came back normal. The problem is....hes young and you can be seronegative.  Since hes seronegative for his arthritis we will continue to monitor him.  His eye appt. is in a couple of weeks.  We will see if his bottom lids are still cemented and go from there.

Its been 20 days today since he stopped the prednisone...again. He started another arthritis flare on Tuesday the 14th.  This time it came on a bit weird and Mom Dad and Doc are all a bit concerned.  Bruce went to bed Tuesday night and told me that his legs couldn't calm down.  He said they felt like he had a shot of Benedryl from the infusion room. He gets very agitated and he feels tired but his legs get very restless, sounded like restless leg syndrome...about a half hour later Bruce got up from bed and told dad and I that his legs felt funny from the waist down. He said that he felt like something was crawling on both legs all the way up to his waist or maybe like a pelting of hard rain hitting both legs. Bruce said it was bothersome and got worried.  Well we have done this with Bruce enough times to not make light of it...but we told him that there isn't much we can do and we would see how he feels in the morning.  We put him back to bed and he was wobbly on his legs and he said they feel like they are very weak.

On Wednesday morning he got up and he said the feeling in his legs had dropped from the knees to his feet and if he laid on the couch his legs would get that jittery feeling again.  For the last couple of days I've noticed that he had been walking on tiptoes not wanting to put his heel down (this happens sometimes due to enthesitis). He was tight in the back and when he put his heel down he said it was very uncomfortable and both the front and back of each thigh hurt if he went to sit, squat or bend.  He also had a rash that was lacy on both legs.  No fever.  The wobbliness and the sensation in his legs were still there along with tightness in back. Very tired. By that night he was hurting in his lower back and legs.

Now this child has been not feeling well since Feb with Ulcerative Colitis which lasted until the end of May. Couple of weeks prior to, he finished his taper with prednisone. Started a flare the last week in May and went right into an arthritis flare and started on prednisone again only to be tapered 20 days ago and now has started another flare with very odd feelings in his legs. Is remicade DOING ANYTHING? ANYTHING?

He is on 400mg of Remicade every 3 weeks, Celebex, Asacol and MTX. with the possibility of going back on prednisone which causes him glaucoma and pressure on optic nerve.  He has been on every drug except for Humira.  I don't know if he can take Cymzia(sorry for SP) so we really are running out of options.  Dad thinks the Remicade is doing nothing.  The flare in Feb which almost cost him his colon should not of happened and its very likely it will happen again. UC patients go every 6 to 8 weeks.  He goes every 3 weeks on remicade. So in 6 weeks getting 800mg of Remicade is a bit too much.  Doctors were surprised that he had a UC flare.  Thought meds were failing him...which in a way they were.. because it took IV steroids to finally fix the flare. Needed steroids to fix arthritis flare in June and an increase to 400mg on Remicade and 20 days after taper he is in a flare again. Remicade is really the drug of choice for UC is the remicade helping the UC? I don't sure as hell isn't helping his arthritis and am not sure if its causing any central nervous system problems.  Remicade can cause MS and Neuropathy...numbness and tingling of legs and arms it can also eat at the sheath over the bundle of nerves that run from head to feet...What to do?  I don't know because Bruce really needs to have a drug working for both UC and Arthritis. I'm afraid if i get off Remicade and go to Humira we wont be able to get back on remicade if and when Humira fails. Bruce builds antibodies against all the drugs...they just don't work after awhile.

I would like to think that Humira would be perfect for him... Unless there's something new out there I don't know about yet. Bruce has felt crappy over the last 7 I'm typing this I'm thinking...wait a minute.  Bruce didn't feel good in Dec. and we upt his Remicade then. So I guess its pretty simple...either we use Remicade or we don't...and that's the decision we have to make.  My hubby (dad) thinks we could just give him prednisone when he flares and not put all this crap in him that doesn't seem to do the job...were giving him the prednisone anyway...hes still having flares.  Dec Flare, Feb Flare, (March, April and part of May on Prednisone)May and June Flare, (June and July Prednisone) August Flare...Its not just a couple of days per flare they last a month or two..So decisions need to be made. But giving just prednisone is not the answer.

Bruce had his infusion today.  Hes very quiet. He had no relief from the infusion.  Hes worried about the leg sensations (they are gone) and his lower back is quite tight.  Not much I can do for him right now except to wait and see if the remicade will pull him through. Pain medications don't work for tightness.  There are so many possibilities regarding the odd leg sensations.  He already has had a muscle biopsy to rule out Muscular Dystrophy and Myopathies. It could be from a pinched nerve, to medication, and then we could get into some ugly things...or maybe its just a onetime happening and he wont get it again.  I hope its the latter.

So...over the next few weeks we have to watch, wait and see.... and make a decision.  

Sunday, July 15, 2012

Dry Eyes and Nose Bleeds

Bruce has been feeling very good in the past week. One day he just felt really good. Bruce said he didn't know he still felt bad until he felt that good. He still has fatigue that's kicking his butt and were not sure where that's coming from. We tapered Bruce pretty quickly off Prednisone. He's on 10 mg as of today and Dr. N wanted us to stay there for a week. There are times when your not quite sure if something is going on in your kids body. You expect the little things...colds, sore throats, coughs etc...but even though I expect these little occurrences they don't happen often to Bruce. Well for one he's home schooled which has been a huge blessing. I could only imagine how ill he would be if he was in a brick and mortar school. As a family we do things when there's not a lot of crowds....on off days or especially when kids are in school. But sometimes you get the feeling that something isn't quite right. Which seems to be all the time lately. It's amazing how a little body can endure such pain and anxiety to not even know when he actually feels good. Now I've tried to keep a level head when Bruce gets sick....but it's hard because every time he gets sick it's something major. What you think might be not. So I either wait and see or go to the Drs and get Bruce checked out. It was easier to wait and see when he was little and didn't have AI issues...but even then I didn't do that often because with Bruce it was always some thing odd. in 2006 he peed bright red, I ain't talking a tinge of looked like someone bled out...Hawaiian Punch red! He still will get blood in his urine, seen and unseen but not to that extent. Or he had to have his mastoid drained, or his umbilical hernia operation and eye surgery to create a tear duct that wasn't there. He also is very forgetful...He has trouble writing his thoughts down which we have been working on with biofeedback....which has helped a lot. So Bruce has been a bit of a wonder. I try not to take it to the next level but I can't help it. Cuz if I don't....well I think things would end up more disastrous. So I keep his checkups for him and last week, it was for his eyes and a check up on his Costochondritis. I went to see Bruces family doctor Dr B last Monday. He still had a pretty good cough and the costchondritis is still there but chest xray looked good. His nose is very dry and the doctor had felt it was allergies although he's been pretty good lately. The doc says nose is very dry and irritated. I forgot to tell him that he's been getting nose bleeds. Nose bleeds with very large clots. A bit scary but I too thought it was allergies. I really like Bruces ophthalmologist. Dr T is a great dr. He's very thorough and he is very cautious in regards to his patients especially the ones who have side effects of prednisone. When Bruce is on prednisone pressures build. Two weeks ago they were raised a bit but not much to give drops, so high normal. I went back last Thursday and his pressure was excellent as well as his optic nerve. Then he preceded to tell me that his eyes are very dry. In fact they are so dry that the bottom eyelids are completely cemented. Which means that his ducts on the lower eyelids are not producing anything. As he's looking at me and we both know where each others thoughts are going, I ask him if he is going to do The Test. He's says yup, we wait a few minutes and he tells me that he is still producing tears, which really doesn't mean a thing. I guess there is a couple types of tears. He gets an oily secretion each morning and he has been complaining that he thinks he has sand in his eyes or a hair or an eyelash which again I thought was due to allergies. My anxiety level is starting to raise a bit. He said he didn't think that he had Sjorgrens but thought it would be best to get some tests done and he would be sending a note to Dr. N.. Dr T also gave me some gel drops for lubrication 4 times a day as well as a Azasite drops for any infection that could possibly come up. Apply 4 warm compresses each day and wipe eye as you would be taking mascara off. Everything he said to me I did not hear and had to call back...I just kept thinking... Shit! Not another Auto Immune problem. I left the office and called Dr. Ns office. Left a msg for his nurse to call me because of what just went on at Ophthamologist office. Dr N called me back and was very pleased that Bruce feels better and no pain. I did explain about his eyes and he said he would do the testing at his next infusion but that it was probably just allergies. Well,its real nice that every one is hopeful...but if I'm talking to a Dr. and my child has arthritis and he comes up with dry eyes wouldn't it be something to look into. It sure did get quiet when I said his bottom lids were cemented and that nothing was coming out of his bottom lids. So we will wait for those tests to be done at infusion time. I really hope that it is his allergies or hormones that play a part this time around. I called the Sjorgrens Foundation and found out that most likely he might have this due to him having JA and YES the tests can come up negative since he is sero negative. His mouth is not dry but he's very thirsty and the nose bleeds is another indication too. It does make me wonder why every time he's put on steroids he does so well in his reading and memory...I've asked this to every single doctor and none know why except to say...he probably feels good. I'm not buying it...does it mean that there's inflammation in the brain? It's just something else that presents as a pattern and has to be we shall see. I'm trying to stay positive....but it's really hard when there are a few other signs of Sjorgrens that Bruce has that are very coincidental....I really don't want to go there but I have no choice. My hubby asked why do I always look at the bad side? Can't it just be what it is? Im not looking at the bad side...just doing my homework. Do you think I want to look at all this shit and pile more on our sons plate. So I do my research and look and look and look. I told him, it's my job and I'm sorry that I look into every little thing but if it's going to help Bruce in any way from getting aches and pains or make his life a bit easier then i will continue to do what I am doing and I don't see you doing it. Well I guess that shut him up. It's just another illness that's popped up and I have to research it and check it out. So within a few short weeks Bruce went from a UC flare to a JA flare to chostondritis and now dry eyes and nose bleeds. I guess I could shrug it off but it's not me, it's our kid. Hubby just wanted some down time for Bruce to enjoy his summer and so far it ain't so good. We continue to monitor Bruces inflammation with his gut monthly so we can stay ahead of a very dangerous area(colostomy). Down to one capful of Myralax a day, but the Asacol is his maintenance far so good. I am hoping for this little boy that he will have some time to just be a boy and not have to worry about any least for a while. and please please go away fatigue. Well it's 3am and I couldn't sleep...but I think I can now.

Friday, June 22, 2012

Just tired

I'm back to not sleeping so good. I have so much on my mind. I go to bed at 12-1am and get up at 5-6am...I am sure this will catch up to me sooner than later. I would like to say oh...I'm good on 5 to 6 hours of sleep, but I'm not. I have so much on my mind. Its hard to turn my thoughts off. I'm good when crisis's just the aftermath. Im so tired of talking. me? Yup, my husband would say that's impossible. It's true...I've become a hermit. I used to hate to be in the house. Now I love being here. We all get along so well. My husband and I have our arguments, especially around very difficult times. We try to avoid it but it just can't be can be hard. I am thankful for the man that he is. Just need to be on the same page, he too has a lot on his mind and sometimes we don't always give each other the space nor the time we both deserve.
    I've become a taxi for my daughter, Katie who is enjoying her time at theater...She got the part of Gertie in the musical Oklahoma! I'm so proud of her...this is her 3rd play and she has had 2 principle roles and one lead. Oklahoma! is going to be such a learning experience for her. It's a fun musical and I can see her growing up in front of me and it's very exciting to see where and what she will do. Time has gone by so quickly, it's hard to believe she will be in ninth grade...A Freshman!!! Dad and I keep giving her more room to grow...As we hold our breath...she's doing fine and has a good head on her shoulders. Since we was hard on her for awhile in 6th and 7th grade...a bit lonely but I told her to be's all coming and she realizes this now and is thrilled to be among kids who want to do the same thing. Katie has also realized that she is out of the drama crap at a regular Brick and Mortar school. We kind of missed that part of school and am grateful for it. My daughter is too. She has realized that with no "drama" she is able to focus on school and theater/singing without any negative effects. She is who she is and nothing has changed her.

 Bruces birthday is July 3rd. He will be 11 and he's counting down the days. We got his surfboard and he asked for a pocket watch and fishing poles. There is a big bass in the lake behind our house and he needs a stronger rod to get him. It will be a great celebration for him. He deserves some good times.

 I have been reading up on a book by Dr. Kahn called Ankylosing Spondylitis. I have read it before. It's an amazing book. I am sure that this is what he has only it would be Juvenile Spondylitis... he doesn't have the huge signs on an Xray of this illness except for the very small narrowing in the SI joints but he has all the rest. Amazing! But it concerns me because of his age and how hard it is to control this illness. It's very hard to understand why this is all happening to him at such a young age. There is so much that is hanging over his head. He has a hard time falling asleep sometimes. We are keeping him on 30mg of prednisone for the next week. About every other day he is unable to walk and is very tired and stiff...on the other days he's able to move about but pain and stiffness is still there. The Costochondritis is still there and I am worried it's apart of the Ankylosing Spondylitis. I noticed yesterday that his right shoulder blade is swollen. The book explains that the whole trunk can become inflamed which causes tenderness in the chest and the ribs in the front as well as the ribs attached to the spine...this would mean that his illness is progressing which is very bothersome. AS has the potential to decrease his lung capacity. When he holds his breath his chest hurts. We are doing breathing exercises and exercises from the book which helps to strengthen the the girdle. The book also states that AS in kids will show up in the knees and shoulders with very little swelling and that you will be seronegative which is what Bruce is. I wish that I could find a peeds Dr who specializes in Juvenile Spondylitis. Dr Kahn is in England and would go there to meet with him in a heartbeat! Maybe its a not far off in the future.

 Since we are keeping him on prednisone a call to his Ophthalmologist is in order. He will need to be seen probably next week to check for Glaucoma and optic nerve pressure. Dr.N says this is very worrisome because Bruce needs the prednisone to keep down the inflammation but can't have it due to problems with eyes. So he is in a catch 22...

 That catch 22 is still there for his Ulcerative Colitis/Chrohns. If he gets a UC flare were in trouble. We have put the Colostomy off for awhile...both surgeons at All Children's and Cincinnati Children's said if meds will not do there job because it affects something else then colostomy is sooner than later. The only way to control his UC flare is with IV steroids at 60mg. So Bruce is being checked to see if he has blood and inflammation in his stools monthly. We need to immediately put him in hospital to get it under control quickly.

 There is soo much to think about. Its very hard to keep things going well all at the same time. I'm not sad just wary. We have great days, good days, and bad days...most of them good despite the flare that's raging in Bruce right now. He's exhausted...but pushes to do when he can but tires out within a half hour. We will get past this...but for now I just push ahead and do whatever I can to make things easier. Time for my walk before the rains....a bit of exercise is good for the soul.

Monday, June 18, 2012

Another Flare but So Much More

I took Bruce to Cincinnati Children's Hospital and met with the Gastro, Surgeon and the psychologist there. Bruce got to swallow a pill cam to check out his small intestines and to rule out Crohns Disease which we can't because he tested a little bit positive for it. The pill cam showed no irritation in the small intestines but a blood test showed that he also has some inflammation due to Crohns. Both surgeon and gastro said you can have both. Really? There is a test that will confirm Crohns but there is no test to confirm Ulcerative Colitis. I was very lucky to have both doctors at the same time. Surgeon said that a lot of times the colon is pulled only to have continued pain and inflammation in the small intestines...This is very hard to hear. There is a type of Crohns that doesn't show up on blood tests or when biopsied...but because he tested a little bit positive we are waiting for another flare. We know that Bruce has gastro issues but to try to decipher which one and what were going to do about it remains a question. Bruce still had pain in his gut when we were was going away but it was about a 2 on the pain scale. Gastro was going to put him on Neurotin. It helps with pain in the healing process. Neurotin is given for a lot of different health problems.
 Saw the psychologist who confirmed that Bruce does have some anxiety and that EMDR is very good for him as well as the biofeedback he does. Who wouldnt. Hes been through hell.  He was very quiet but spoke to her when questioned and this Dr said Bruce handled pain head on. He doesn't hold it in. He just deals with it. This was a good way to deal with traumatic events. This just made me's just too much. He took a surgery to remove his colon, wear a bag for 8 weeks as a positive outlook. Accepted it and had mentally prepared himself for what he was about to go through. Only to be swept out from under him and to be told it's not going to happen. You would think he would of been happy but its still looming over his head. It's a very good possibility it will happen in the future. So you cant be completely calm...On anything. Never know when your going to flare, bleed, hurt, not get out of bed. So all these thoughts never go away. That's a lot for  a 10 year old to handle. By the time we left for home Bruces gut pain had subsided and little did I know he was entering the beginnings of an Arthritis flare.
 The day after we got to Cincinnati Bruce started to get stiff. He didnt tell me. I didn't know. I was so focused on the UC/Crohns. He was short tempered. Couldn't sit still, hyper, and angry. I took it all in stride...thought it was the aftermath of what he has been through and the exhaustion of the plane trip. Now my son doesn't get like this. He's very good natured...but he was just hyper and it didn't take much to set him off. Over the weekend my husband and I just thought he's getting his frustrations out.   I sat down with him and he just fell apart. He just cried. No words just a break down. We sat together for a still not getting it...then he told me..."Mom, I've been hurting" and I'm stiff when I wake up in the mornings. Oh he cried. He didn't tell me up in Ohio because he thought he just was doing too much and he knew his Remicade infusion was coming up and was hoping that would take care of the pain and stiffness. This is why he was mad. The following day was Monday and we called Dr Ns office to see if we could up his remicade infusion which he OK'd. We still are at every 3 weeks but at 400mg. Started Bruce back on Celebrex. Didn't help and by Wednesday night he was unable to get up and used his wheelchair full-time. We just ordered him a new wheelchair, the sports kind. He wants to be independent as much as possible so the rigid type wheelchair would make it easier to move. Normally I would see weakness and pain in his girdle, SI joints, knees and shoulders. This was new. His lower spine hurt and he was unable to pull himself up on the wheelchair. When he stood the pain in his knees was just too much. As much as we hated to.. he is back on prednisone, hoping to squash the inflammation. He was able to walk by Friday afternoon only to be let down Saturday afternoon which he was unable to walk again. Needed assistance getting out of bed Sunday morning...but was able to walk by Sunday afternoon. Its a constant roller coaster ride!
 I had taken my daughter Katie to the theater Friday night and my husband called to tell me Bruce had pain in his chest. Tramadol did nothing to help and the pain was gone on Saturday but he was very sore. Late Sunday afternoon the pain returned and thanks to reading up on it was assuming it was Costochondritis. But his left breastbone is a bit swollen? So, his left breastbone and sternum was in pain and it hurt to press down on it. At the bottom of his ribs on his left and right was two indents. It looks odd. I can't confirm that it's Costochondritis until someone looks at it. Bruce was very uncomfortable when he went to bed. He just got up and says it's feeling better. No pain but very sore where his ribs are. He is always so happy in the morning but as the day goes by he's exhausted by late afternoon. He just told me his knees were less stiff as well as his back. After Tuesday we will try to taper. He can't be on prednisone for more than 2 weeks or he will get pressure on his optic we have to watch carefully. it's nice to see him smile. Bruces birthday is July 3rd. He will be 11. I hope he's able to feel better by then. He's getting a surfboard. Bruce has very good balance when not in a flare. It's amazing what water does for him. He will just have to take it slow. He can surf when he feels good. He's an amazing boy. We would like to get him a therapy dog. But he's allergic to dogs. So I need to do my research. Going to look at labradoodles and even sheepdogs. He's not much for friends. He would rather be on his own...he's always been like that. He does his own thing but he wishes he had a dog. I would like to give him that.
 My quiet time is over. It's a Dr appointment for me this morning then take Katie to theater. Katie had an audition last week for Oklahoma! And she made it! It's a very intense 5 week workshop. She will be one of the youngest in the workshop. The musical is in 4weeks! Yeehaw!
 Bruce was taken to ER last night (Tuesday). I was 99.5% sure it was Costochondritis but Im not a Dr...Yesterday he had trouble breathing like he had just finished a sprint and being worried took him to ER. It would be the one time I didnt take him and I would kick myself later.  Heart is fine but has acute Costochondritis...he does have swelling but doctor thinks its due to his arthritis and didnt think it was Tietzes Syndrome.  He was surprised that he is on prednisone and celebrex and still came up with type of pain.  Going to try Neurotin (Gabapentin) to see if it helps.

Thursday, May 17, 2012


Bruce had his 4th colonoscopy...yesterday...yes 4th. Three in the last 2 months. He also had an endoscopy. Bruces pain is about an 8. It averages about that everyday. It doesn't change. Some days it will get to a 9. Pushing on stomach will cause a little jump and guarding. We tried different ways of moving to see if the pain would intensify. What we found is more pain when bending over but the pain disappears while on his back, hands above head and stretches...he says Mom, it goes away. So yesterday we had the endo and colon looked at and they are normal? Um ok...the pain is probably from anxiety and that maybe some meds would help that. What they didn't know was that Bruce has been seen by a psychologist. He is fine...well he's mad and that he hates both diseases and he feels like he's been through ringer. Always cheerful most of the day. He's mad and I can't blame him and who wouldn't have some anxiety...we were prepping him for a colostomy....and he was accepting...I took it upon myself for him to be was alot. So we do EMDR. This is Eye Movement Desensitization Reprocessing. It's a therapy for people who have PTSD or Post Traumatic Stress Disorder. It's an incredible therapy. With kids it helps to move the clutter that forms in our head from one side of the brain to the other. As adults we can carry a lot of baggage over the years. We sweep things under the rug for years and not let things bother us and then one day you fall apart when the pizza gets burned. Were not crying over the pizza, were crying over whatever we swept under the rug and didn't deal with at that time. Then psychologist tries to peel away the layers to get to the root of the problem and that can take years. When you know what that big factor is in your life this helps...EMDR helps to move the lingering feelings and helps process's an incredible tool. Our doctor says it's like this...your in a scary wood...well you can walk out or you can run like hell. Which do you prefer..for like hell. EMDR helps to speed therapy up. For kids, they don't have the years of baggage like an adult so the therapy works even quicker..don't have peel all those layers back. Bruce is angry. angry that he can't do some of the things he wants to do. He's 10. Most days he will put his illness on the back burner and go. Yes he will pay for it that night or the next morning with his arthritis. The UC is a little bit different. He can't run hurts to run...If it was anxiety it would come and go...his pain has gotten increasingly more painful as his prednisone wears off. By the end of the day and this has been everyday...he is exhausted by the time he goes to sleep. This pain he has in his gut he deals with and pushes it out of his mind, exhausts him and makes him wary by the time he goes to bed. This is what he's mad at....and maybe a bit insulted. He knows the difference between anxiety of oh I just got in trouble and I'm screwed! Those were his words to me. This is pain. He doesn't sleep on his stomach...I know I've checked on him through the night, it hurts. You would have to be consciously aware not to do that. I think clinically if a doctor can't see it on a test they will assume it's psychological. I'm not mad at the dr...just want the dr to go a bit further...well we have done that and our psychologist says he's good and strong, does he have anxiety? Yes? I would. But not to the point of needing medication. Bruce and I are going on a plane trip to Ohio! Yup, we had to cancel a trip to the keys,(Bruce didn't know) we will go later in the summer. Cincinnati Children's Hospital is one of the best places for gastro. We had the best of luck to get to see this doctor in a very short amount of time. We leave on the 29th of May and come back on the 1st. This doctor wants to do a test called MRI enteroscopy. Trying to figure what this is..but I think he's gonna check out his small intestines. I'm grateful that this man has called to ask if we have done certain testing and even asked if we could ask the doctor who did the scope yesterday to do 2 more tests. The dr complied as he knows we are getting a second opinion. So I'm happy we get to go to Ohio. Bruce is too! Whatever pain he has is real. We know anxiety an pain can go hand in hand...but I think it would be a general pain in his gut. When motions and movement come into play, not to mention distention of his belly, I think were overlooking something. The new dr is wondering if he has crohns disease. So we shall see.

a continuation...Drs dont Listen!

After talking to a Nurse Practioner after hours...and getting no where, they dont call in pain meds for kids who have bad stomach pain...actually they dont call it in for anyone. Bruces pain was a 12 when pushed and a 10 1/2 when just sitting there. I think what happens to Bruce is that he tries to occupy his mind during the day,for example we are making a very big pirate ship and are playing a lot of video games.  He deals with this pain all thru the day with cheerfulness then to get to the late afternoon early evening exhausted and either irritable, quiet or crying due to pain.  It has taken a toll on him.  Well all of us. My hubby called the drs this morning and we are getting ready to do a CT with Barium and Contrast and well...another colonoscopy.

See they dont listen to parents...oh it must be constipation...when he hasnt had a solid bowel movement in weeks.  It is literally water. It doesnt get thru to them. Not all kids are the same, Bruce has a tendency to have same UC symptoms as an adult.  Im sorry its not in your little box, please think outside the box for Bruce.  Give this child a break.  His stools are nothing but water due to needing to make it this way so his colon would shrink...and it has.  Well it might by viral or it might be that he has a lot of anxiety...hell ya on the anxiety part! But anxiety does not make his stomach hurt so bad hes holding his breath!

  But guess what??? Stool cultures came back positive for blood/inflammation... Really?...but that could be from constipation from the stool...OH MY GOD!  SHut up! There is no stool to scrape the sides...whatever he eats is there for me to see later that day.  STOP AND LISTEN!!!

Sunday, May 13, 2012

Wait AND See

We got the results back from the MRI and I guess the gastro was scratching his head as to why there wasn't any inflammation. No thickening or scaring...well he's only had 2/3 flares. From what I read early stages of ulcerative colitis doesn't need to show any scarring or thickening. So we decided to do another Colonoscopy and get a couple more tissue samples to rule everything out. Stool cultures and blood tests were done too. After the colonoscopy the Gastro came in and explained that his colon looked perfect and that there was no need to remove his colon??? The medicine must have started to kick in (after 30/40mg orally then 60mg IV for 10 days then 30 for 2 weeks, hes been on it since mid Feb. Well' isn't that what we came home to do? get his colon less inflamed so the surgeon had better tissue to work with?  The surgeon and the Chief of Surgery were completely confused as to why he was not getting surgery.  Its got to come out.  Colon rectal cancer will be a good possibliity within 8 years. Im trying to keep my kid from having a permanant bag.  If surgeon has good tissue a j pouch is created and 8 weeks later bag is removed and he is reattched.  Per our Dr we were to go in to Bruces room and see him and be very excited that he didn't have to get his colon removed? OK, I'm sorry but I just can't do that...what the hell happend?  We prepared our whole family.  On our way home the next day my son told me that we were full of CRAP! And yes I believe he's right. He said that we were full of crap because he knows his gut and his gut is saying it's got to come out! I agreed with him.

 It took me a couple of days for this situation to sink in.
 When I called, I think they thought I should be grateful that his colon didn't need to be I am grateful...but he does have Ulcerative Colitis and it does run through his whole colon so are we delaying the inevitable? The surgeon thought so. I keep getting you want this colon removed? This is coming from the gastro dr who said it needed to be removed...because we should have gratitude in our hearts? Well NO! I don't want his colon removed...but gastro office were the ones that said gee were surprised that he had a flare because he's taking remicade 300mg every 3 weeks... So because the prednisone is working and keeping the inflammation down in his colon we won't worry about the Remicade, which will most likely stop working when his prednisone is completely tapered. Bruces meds seem to stop working at about 3 months...this is his track record. Last October his meds started to fail so we increased the remicade to 300mg and every 3 weeks.

 Once again I hate prednisone. Bruce went to eye Drs office today to check on his pressure. He's up to 25 and there's marginal problem with the nerve in the back of the eye. This is caused from the prednisone. So although the prednisone is keeping the colon some what clean it's messing with his eyes.

 I really wish that a dr would look at my child as a whole. I have alot of what if questions...what if remicade stops working. What if his UC starts to flare again? Will he be back in the hospital for a longer stay, 1st time was 5 days... 2nd time 10 and on prednisone a lot longer. Will the prednisone cause permanent problems with his eyes..the answer is yes to that one. I can't confirm anything else when asking all these questions, well if I had a crystal ball I would tell you...? Really, that's all you got? Yes but we were all so happy that his colon looked well? Well i was dumbfounded as was my husband...we were perplexed that he had 2 dates for surgery set. The big question I have is what if he flares and the colon doesn't look as well as it does now so when it is removed the surgeon won't have a lot to work with. But don't go there cuz we don't know the future. Well I have a lot of questions that no one wants to answer. It's very easy to say all this because as a dr they can hang up the phone and go home. Hes taking double doses of  Myralax and his stools are nothing but water...His bowels don't move unless on this dose, dr says it's due to enlarged colon but I think it's just not moving. Bruce went from a 3 to a 6 and now to an 8. Last Monday he just started crying out of the blue...he told me his stomach pain had increased. I think as a mother there are times when you just lose it. That day was the day. I can't just keep patting Bruce on the head and telling him how sorry I am that he's walking around with a stomach ache and to try to forget it. Were not talking about just a belly ache.  The kid is in pain, its not fare...we owe Bruce more.  Called dr office and dr called me back within 20 minutes because I was a bitch...that I'm done and can't continue doing this to Bruce. Xray was taken and stool samples were picked up....xray was negative for enlarged colon and stool and gas on xray looked normal. We are waiting back on the occult blood, c-dyf, and the calprotectin cultures which have been taken 3 times and even biopsied. Bruces pain was bad thursday night, he was holding his breath... I know he hurting now...called the dr office after hours. I'm sorry there's nothing I can do, I'm from the other office and don't know his chart...WTF! Really? She says to try a heating pad...sorry but go fuck yourself...yes sadly this is what I told her and what the hell was she doing for anybody. Yes sorry. lost it. Wasn't one of my better moments. I honestly think the dr doesn't know what to do with us. Unfortunately he will wait to see him bleed in another full flare. I feel sorry for whoever will be in that room when that happens. If it does we are compromising surgery and having good tissue to work with.

 He had another dose of remicade on this past Thursday...same day as intense pain so I think its pretty obvious that the remicade is doing nothing for his UC. The dr says he not sure if it's inflammation...well I gave Bruce Tramadol on Friday night...and guess what? His belly pain subsided to a six. So what the hell does that mean...yes that there is God,Bruce even knew it..

 We have been in contact with Cincinnati Childrens Hospital. They are number one in the nation for gastro problems. The dr said he would see Bruce very quickly(next week and half) and that we would speak to chief of surgery while their as well. We find out Monday when we can see this new Dr..we got lucky...right place at right time to meet this Dr. So finally hoping to get answers and to get Bruce some relief. Giving tramadol is not the answer. Taking his colon out is not the answer either unless necessary. I just can't take that chance of Bruce bleeding again which is probably going to happen. I'm trying to prevent a child from wearing a bag for the rest of his life...and if thats making me a bitch, I don't give a damn. I'm tired of watching my child drown.

Saturday, April 7, 2012

Trying To Keep Track

Bruce has had some problems since hes been home from the hospital,  he just doesn't have a bowel movement,  he doesn't go unless hes on double doses of Myralax.  On this particular day he wasn't hungry, which is odd due to him taking prednisone.  He had a biofeedback session and when we left the office he broke out into a sweat and said he was gonna be hit me that he wasn't asking for something to eat and when he did eat it wasn't much.  Gastro asked me to get an Xray to make sure there was no blockage.  Of course it was a Friday, March 23 at 4:45.  Went to Urgent Care and it showed he had a lot of stool.  So every hour a double dose of myralax.  3 hours later, nothing. Still felt nauseated going to bed that night, next morning after 2 more double doses of myralax he finally went...just a bit!  Over that weekend he started going and the pain in his gut was subsiding...We see Gastro Dr on Monday...

Monday we get to Dr's office and he still thinks Bruce is inflamed and that the intestines just don't know what to do.  I ask about Mega colon...but he says you have to look really sick and that your kid just isn't well.  I didn't think Bruce had Toxic Mega colon...just Mega colon.  His intestines are too stretched out, so it doesn't know when to have a bowel movement.  I still think its what he has and yes along with inflammation, hes just a mess. Bruce has been trying to taper off of the prednisone...he got down to 20 then had to back it up to 30 again due to bleeding. On the 26th his Gastro Dr. recommended a very slow taper, but felt that Bruce was going to hit a ceiling and that he didn't see him getting past 10mg of the prednisone, this is being hopeful.  Bruce is on 30/20 of prednisone every other day.  Monday he starts 20mg for the week and then 15 the following week...if he makes it.  Crossing our fingers that he does.  Surgery is still out there and the less prednisone the better.  His arthritis has been acting up.  Probably due to not being on Celebrex and the Remicade not working like it did.  I hate prednisone.  For Bruce, when we taper off of prednisone, whatever medication hes on no longer works for him...since Remicade is not working to its full potential now...I will assume it will not work at all once... or if he gets off the prednisone...before surgery.
We got to talk to the surgeon and I like him so much.  Not a man of many words but he just has this ease about him.  We went over the whole procedure. Open Colostomy with stoma and making of a J-Pouch which will be in place of his rectum.  He will remove all of colon... from rectum...about 1cm from anus up to the ilium. Create J-pouch, attach small intestine to create stoma for bag.  7 to 10 days in the hospital.  Expect about 3 weeks of hard times and if healing goes well 8 weeks to reattach the small intestine to the J-Pouch.  Another 7 to 10 days in hospital.  3 to 6 months after 2nd surgery expect alot of stools per day, until the J-pouch expands and the body gets used to this new way of going...eventually the stools wont be so watery.

There were some questions I had to ask that were hard.  Is there a possibility of a permanent bag?  Will Bruce be able to have children? Will he be ok being under 4-5 hours?  And yes...death.  I hate the questions I asked.... and yes there are always possibilities but all questions I asked have 99.9% positive outlooks.  The surgeon saw no trouble because Bruce has had this disease for only a year.  Dr H said that he would get together with Dr. W to see if they could block out a date for this surgery.  We left and my husband and I felt comfortable with this visit and this surgery.  Except for the possibility of a naso gastric tube being placed the day before surgery.  To clean Bruce out...the liquid that he would have to drink is like "antifreeze", most kids cant drink it...So we shall see.  I heard its not pleasant to put in a naso gastric tube.  We shall see.  We got a call on the way home to schedule  an MRI with small bowel follow through...expect a long day!

That week Bruce developed a rash on both knees, the sides of each leg and on both elbows..not directly on elbows but up and down the underside of each arm.  Benedryl didn't do a thing for it. Weird to be symmetrical.  I forget that hes still a kid and he can get a virus. So pics were given to Dr N, and Dr W.  And he was checked for CMV by stool sample and labs.  CMV can wreck havoc on the gut.  So we are ruling all out before he has this surgery.  I think this was the last thing to rule out.  This is not something the Dr's want to do but it needs to be done.

  His MRI was this past Wednesday, started at 11:30 and out by 3:00...1008 pics. I did get to see by chance Dr. R, the anaesthesiologist who did Bruce's colonoscopy.  I liked this Dr. too.  I find out hes one of the Cardiac Anaesthesiologist, only 2 in the hospital.  I feel good about talking with him.  He thought Dr H the surgeon would do an excellent job and that "hes your man", He was very good with Bruce that morning of his colonoscopy and that I could request him, just let Dr H's office know.  Feel like things are falling into place...Feel a bit more in control.  Hubby called yesterday to ask about the MRI results but the NP didn't want to read us the results except to say he had a lot of stool and to double up on Myralax.  We talk to Dr W on Monday when all reports are back.

Saturday, March 24, 2012

YES! Yes It Can Get A Lot Worse

Wow, it's been a long time since I've written. I haven't written in a while because...well I guess we were doing pretty well, besides the fact of having arthritis stuff come up. Bruce flared in December and January. Wasn't able to walk due to his SI Joints and pelvis/hip weakness. Confirmed through a pediatric orthopedic back doctor that it was not neurological, but yes his inability to walk at times is due to flares in these areas which is when we can see his medication not working. Bruce started Remicade last year around June. He was taking 200mg every 4 weeks. In January we started 300mg of Remicade every three weeks as well as starting on Celebrex. This was an easy fix. We were using Remicade to help control his Arthritis...his Ulcerative Colitis never showed itself for the whole year. We just figured that it would flare eventually but as of this time bowel sounds and regular bowel movements were all good.

Bruce was not acting well in February. Very tired, sleeping late. Just not himself. His joints looked very swollen but he wasn't in any pain and since we were on Celebrex and Remicade every 3 weeks, I thought maybe it was just barometric pressure. One night he said he had a belly ache and the next morning he had a full blown Ulcerative Colitis flare! Just like that no warning, nothing except for the belly ache.So we began the process of trying to control this flare. 30 mg of prednisone was given and Bruce was put on a soft diet. We had to get to the Remicade infusion and doctors felt that this would help greatly. So Bruce ate mash potatoes and bread for a while. It looked like he was trying to get better. His motility went from 12-15 stools a day, down to 1 or 2 with reduced blood and mucus. It was better but not good. His Remicade infusion was on Thursday March 1st. Still had a belly ache. Friday morning he was back to 12 bowel movements and passing a lot of blood. Friday I called the Gastro Dr. and he was going to be admitted to All Children's Hospital...but no beds. So I say...I can do this at home. 60 mg of prednisone, full liquid diet like we did with the onset of the UC last year. Dr said ok, his bowel movements were reduced over that weekend and it looked like his body was trying to get better. Despite our efforts for Bruce
to stay hydrated, he looked ill Sunday morning. Stools were better, still had belly ache and I gave him a couple of Ensures and pedialyte for the day. He felt a bit better and his bowel
movements looked good. I was going to feed him some soft foods Sunday night but decided
against it until the next morning. I think God gives you a special button in your body to
say...somethings wrong! So I got up early to wait for him to get up and he says "mom, I think
you need to take me to the hospital" I really thought he was joking because his motility and
the bleeding was better. Oh how I could of cried. nothing was working... My hands shook.
There was so much blood, what the Hell is going on? I dideverything that was possible. His body was trying to fight it but it couldn't.

The doctor told me to come in so he could be admitted, got my stuff together, called Bruce Sr
and he came home from work. Was at the hospital by 2pm. Bruce was put on 60 mg of IV
prednisone and a liquid diet. His motility was back up to 8 stools that day then 2 on
Tuesday. Tuesday afternoon he was given a lot of Myralax to prepare him for a colonoscopy. I wasn't ready for the outcome.

Wednesday Bruce had his colonoscopy. The DR. came in to tell me that the Ulcerative Colitis has gone through his entire large intestine...from rectum to appendix. Bruce is very young for this and since he as at the top of his medication, there is nothing left for him to try.
THe Dr.W was sorry to tell me that when its like this, Bruce will need to have a Colectomy. He showed me 12 pictures of his intestines and I tried real hard to compose myself but I don't
think anything can keep you from falling apart. I sat and cried. I just couldn't stop. I
called my husband and we both cried. Recovery paged me to say Bruce was up but it took a few minutes to compose myself. So much goes through your head all at once. His whole life... past, present, and future came at me. They were going to get a team of doctors together to
discuss Bruces condition...3 peeds gastros, peeds rheumy, and pediatric surgeon. Each came to
visit me several times to discuss Bruce. My hubby and daughter Katie came down the next day.Surgeon discussed surgery... His whole colon needs to come out! Because he's so young, his chance for Colon Rectal Cancer starts about 20yrs. 5 hours under anesthesia for the first half of surgery. Which scared the Hell out of me. 6-8 weeks or (longer due to prednisone) of healing with a stoma and a bag. Once he's healed they will do the 2nd part of his surgery to reattach the small intestines to the anus and make a jpouch which will act like a rectum. It will take 6 months or longer for his body to adjust.

Bruce spent 2 weeks in the hospital and has come home to prepare for this operation. The goal is to reduce the prednisone as far down as possible. We went from 60 to 20mg but on Tuesday, the 20th he started bleeding again and his prednisone was back to 30mg. We will try to get
back to 20mg by this Monday. It might not be possible to get that low...Surgeon wants less
inflammation and less prednisone but it might not be possible...which is scary for wound
healing. Since he is already on prednisone they will have to give him a very large burst of
prednisone right before his operation so as to not have blood pressure or cardiac problems.It
will be an open colostomy, the dr will use this technique so he sees all instead of a scope.
Better to suture so there's no leakage as infection could set in. There's a strength with
this surgeon. He makes me feel secure in his ability to operate on my child. He did Bruces
muscle biopsy.We have been preparing Bruce for this and I must say...he is ready. It's a
roller coaster for him. I do not lie but slowly explain all to him, the pic line,
nasogastric tube,drainage tubes, and catheter, the bag and the number of bowel movements he
would have until his body readjusts and other complications that could set in. We have looked
at pictures. He will have a scar down his belly but the surgeon said it would be a thin one.

Our days are filled with family and doing as much as Bruce wants to do. He was so excited to have Katie's birthday early so he could be apart of it... My daughter will be 14 on the 31st
of March. I just put her high school courses in. I can't believe how fast it has gone. We
celebrated her birthday on St. Patricks Day. We didn't know what would happen in
between...everything is on standby. She is a gracious young lady who for days didn't know what
to do with herself when knowing what her brother is up healing even before this
event is needed. Even though I have become is for my family. It is a reflection of
what has come and what is to come. It's hard to prepare for this and there is no way really
but to have faith and know within your heart that you have done everything you possibly can to help your child and your family. This will be the hardest journey for Bruce and our family. There is change...there's always change but this will bring hope. Hope for a better life for Bruce. It's got to be.

My focus is my family...but when I'm by myself, it's quiet, silence. Someone once told me, if you listen to the silence it talks back to you...and it's true. That calm before a storm let's you prepare for what's coming. Silence helps you to think things through, it makes you listen to your thoughts and put your focus on where it's needed. Everybody in our house needs that extra attention at different times right now...and it's given. In doing this I have found my own calm.