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 little...is 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 pink....it 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 checked...so 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 drug...so 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 illness....at 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 strikes...it'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 helped..life 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 homeschool...it was hard on her for awhile in 6th and 7th grade...a bit lonely but I told her to be patient...it'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.
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 homeschool...it was hard on her for awhile in 6th and 7th grade...a bit lonely but I told her to be patient...it'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 there...it 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 cry...it'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 while...me 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 nerve...so 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 pain...me 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.
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 cry...it'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 while...me 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 nerve...so 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 pain...me 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
2nd Opinion - CINCINNATI CHILDREN'S HOSPITAL
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 seen...it 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 it...it'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 me...run 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 far..it 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!!!
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 removed....now 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 asked...do 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 inflammation...my 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.
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 removed....now 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 asked...do 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 inflammation...my 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 sick..it 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 then..at 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.
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 then..at 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.
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