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 ulcer....so 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 flaring....so 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.
Sunday, September 16, 2012
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 outcome...so 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. Um...it'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 think..to 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, etc...so 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 over...it'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.
We went for an MRI on his SI joints on Tuesday....was a bit afraid of the outcome...so 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. Um...it'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 think..to 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, etc...so 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 over...it'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 fed...it 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 further...in 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 duck...it 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 joints..so 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 Celebrex...by 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....
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 further...in 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 duck...it 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 joints..so 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 Celebrex...by 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....
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