Its been a while since I wrote. With homeschooling and Bruce's illness its been a little stressful. We were doing well on the Enbrel shots and the NSAID Piroxacam, but we were having stomach issues. He was hurting every night before he went to bed....Almost like it took one of the drugs 24 hrs to get to the part that was hurting him. At first we thought he was just trying to stay up late, but about an hour later he would be fine. One night it was real bad and our Rheumy Dr. N told us to stop the piroxacam b/c it sounded like that would be the cause. Bruce started to have bowel movements with blood, clots, and coffee grounds and going up to 9 times a day. Bruce had an Endo/Colonoscopy on February 23rd and it was confirmed that he had Ulcerative Colitis from the rectum up to the sigmoid of the left colon. We were sent home with prednisone and Asacol to try to reduce the inflammation. This was not caused by the meds that he was taking. It is another auto immune disease. Juvenile Spondylitis and Ulcerative Colitis can go hand in hand together. Its just a matter of which one is going to show itself first. That following Monday we were admitted to the hospital due to the amount of blood and inflammation his colon had. Bruce didn't eat for 4 days and finally his bowel movements showed no sign of visible blood. Saturday we were on our way home. It was a long stay and I didn't realize how much it sucks the life right out of you. We were happy to be home. That Sunday I took him to an Urgent Care for a dx of Bronchitis and had to cancel his Oriencia IV infusion for that Tuesday. We went on the 15th and so far all has been much better. We are being careful with his immune system due to the amount of prednisone he has been taking which is 60mg and that the Oriencia has weakend his immune system. He also is taking Asacol for his UC and Canasa(asacol suppositiry) to calm the inflammation down. He can not have Fruits and Veggies or seeds of any kind nor any thing high in fiber. I remembered that his eye Dr. had wanted to see him if he ever was on a large amount of prednisone. He only had taken prednisone in the beginning to help his joints but it didn't work. It doesn't work on some kids. Gastro Dr. said it wouldnt help his joints but it will for the Ulcerative Colitis. Thank God it did. I had a bad feeling about seeing the eye doctor. Just did. Sure enough his pressure in both eyes was high and he now has Glaucoma which I am giving him a Beta Blocker eye drop 2xs a day. Prednisone is a nasty drug but a necessity. No damage to the eye but I now have to see eye Dr. every 2-3 weeks. Currently we are on a 10 week taper of the Prednisone. We are at the 40/30mg week which ends Friday. The following week he will be on just 30mg then following to 30/20 and then 20mg and hoping we can get to the end without anything stopping us. If signs of bleeding come back we up his prednisone again for a week then try to taper again. If these meds don't work we have to look at Remicade Infusions. So far the Oriencia is working well for his Juvenile Spondylitis but since both the high dose of prednisone and the Oriencia were started about the same time we don't know what to expect. We just have to hope and take one day at a time.
Bruce is in good spirits despite the change in his appearance. Prednisone justs bloats you out and it is a bit of a change for him to look in the mirror. He holds my hand a lot when we walk every morning. It helps his stomach and face so it wont bloat so much. Actually he doesn't let go. This makes me sad and happy all at the same time. Happy because it doesn't bother him to hold my hand and sad that hes 9 and is afraid of letting go and I tell him I have him for life and he can rely on me to get him through this and he is thankful. I am overwhelmed at my son having to deal with another auto immune disease, Ulcerative Colitis is for life with hopefully long remissions. I often wonder what his adult life will be like for him as I show him how to get through this part of his life now. I can honestly say that I have never met a more stronger individual than my child. Oh how hes grown and what he knows. Too much about medicines and doctors and pain, and just plain being scared but looking at it head on and saying "bring it on".
I got mad one night a few weeks ago. I was so busy helping Bruce and being at the hospital that I forgot to mourn one more illness. We haven't even really had time to adjust to the Juvenile Spondylitis because all drugs were not working and the Ulcerative Colitis popped up then add the Glaucoma and I don't think I ever cried as hard as I did. I was so
Bruce's next infusion is on the 12th of April and we will have tapered the prednisone down to 30mg by then. Hoping that we finally have things under control and lesson the glaucoma he has at this time. Our goal is to have Bruce on all meds that will work for him with no setbacks. These past 2 months have been hard on Bruce and our family but if we can just keep these illnesses in control, Bruce will be in great shape.
Sunday, April 3, 2011
Monday, January 17, 2011
MEDICATION AND MOMS
I knew I loved the Moms on Facebook a couple of months back when I joined but I didn't realize how much until yesterday. See...A mom was asking how we handle a person who has strong negative feelings about the medications we use for our children who have Juvenile Arthritis. After 40 something comments to this I realized that each and every mom on this site was the same. We all had the same feelings...All of us. We all handle these type of people pretty much the same...but we walk away feeling a little bit hurt and annoyed that someone would think ill of us for putting such strong medications into our children. What we need is understanding and compassion and to walk a mile in our shoes. Its very easy to give advice. This women had and still does have arthritis, she says that all you need to give to your child is vitamins and aspirin and not to give all these poisons. When she was little maybe that's all she needed. At that time they didn't have anything else to give to these kids. They lumped arthritic kids into one big diagnosis. Now we realize that there are so many types of JA. Doctors now follow a protocol because each child is different and the severity of the disease is different. The Dr.s make sure after a 12 week period that the current drug is not working in order to go to something stronger. Because there is nothing definitive about this disease we start with NSAIDS first not aspirin and work into the harder drugs only after the other drugs have been ruled out. Giving aspirin to a child as one mom said can cause Reyes syndrome which can cause harm to the child. They say that some kids do OK with just the NSAIDs alone. They don't need anything else. I would give anything to only have my child on an NSAID.
We had to add Benedryl to Bruce's weekly medication. Its such a simple drug and does wonders for allergies, bug bites etc. Bruce gets 2 pills a half hour before his shots on Wednesday and Thursday nights. We changed shot sites to his belly and he gets intense itching and a very ugly welt. 1 pill doesn't touch it and 2 pills barely touch it. With the Benedryl the itching is cut down to about 45min instead of the usual 2 hours. Bruce says the itching is still really bad, hes got to be moving or doing something to try to keep his mind off of the itch. I hate this. I hate to see my son in this loopy state. I hate that I have to give him another drug, even though for many of us its a drug that is often used for the simplest things. Do I have a choice? Yes, I do. I can let Bruce handle the itch for 2 hours and watch him dance around almost in tears because of an allergic reaction or I can help him. This is the third medication that I had to give to Bruce to counteract the medication that he needs. He takes Enbrel and Piroxacam because he has to for the arthritis and Prilosec, Myralax and now Benedryl for the side effects of the previous two. Constipation, ulcers and site reactions Im trying to prevent, because the Enbrel and the Piroxacam is working. If it wasn't for the Enbrel, Bruce would be in a wheelchair. A WHEELCHAIR!
In the beginning we tried fish oil which he still takes, probiotics which he still takes vitamins, minerals, Epsom Salt baths, massage, change of diet...you name it. I spent countless hours doing research and trying everything and anything hoping something would work. Trust me , I had 6 months for all the oils, vitamins, and diet to work and I know all too well of the dangers of the medication that he is taking now. I think about it everytime I give Bruce his shot....Do I have a choice? Yes. To see Bruce in a wheelchair and in pain or to have him walking.
If you don't live with a child who has this illness, its very hard to understand. If you don't see it everyday you don't understand. Trying to explain it, is very hard. Everyone has an opinion. Do I listen, I do, unless I feel it starting to get ugly, which it has. I make a decision to stand up for my child and teach or to walk away with my tail between my legs. I've done both. Depends on the day. Some days my outer shell is tougher than other days. I don't like being picked on and I know all too well about that. If I was talking to my parents(which I'm not), I'm sure they would think I did something wrong. He has arthritis because of something I did...Unbelievable, but that's my parents. You would think that parents would be supportive. Not mine. I think most parents are very supportive. Its what we need. I worry, worry worry about all sorts of things. Last night I went to bed thinking Katie could get this and can there kids get JA. I guess yesterdays topic made me upset on so many levels. But the one thing that made me feel great was that I'm not wrong on how I think. All these moms felt the same and that was very reassuring. I think to help us is to support and try to understand . In a course of a few weeks moms and dads are taking kids to have some type of surgery, changing medications, dealing with their kids pain which is heartbreaking, going to Dr. appointments, Rheumatologists, Gastroentrologists
We had to add Benedryl to Bruce's weekly medication. Its such a simple drug and does wonders for allergies, bug bites etc. Bruce gets 2 pills a half hour before his shots on Wednesday and Thursday nights. We changed shot sites to his belly and he gets intense itching and a very ugly welt. 1 pill doesn't touch it and 2 pills barely touch it. With the Benedryl the itching is cut down to about 45min instead of the usual 2 hours. Bruce says the itching is still really bad, hes got to be moving or doing something to try to keep his mind off of the itch. I hate this. I hate to see my son in this loopy state. I hate that I have to give him another drug, even though for many of us its a drug that is often used for the simplest things. Do I have a choice? Yes, I do. I can let Bruce handle the itch for 2 hours and watch him dance around almost in tears because of an allergic reaction or I can help him. This is the third medication that I had to give to Bruce to counteract the medication that he needs. He takes Enbrel and Piroxacam because he has to for the arthritis and Prilosec, Myralax and now Benedryl for the side effects of the previous two. Constipation, ulcers and site reactions Im trying to prevent, because the Enbrel and the Piroxacam is working. If it wasn't for the Enbrel, Bruce would be in a wheelchair. A WHEELCHAIR!
In the beginning we tried fish oil which he still takes, probiotics which he still takes vitamins, minerals, Epsom Salt baths, massage, change of diet...you name it. I spent countless hours doing research and trying everything and anything hoping something would work. Trust me , I had 6 months for all the oils, vitamins, and diet to work and I know all too well of the dangers of the medication that he is taking now. I think about it everytime I give Bruce his shot....Do I have a choice? Yes. To see Bruce in a wheelchair and in pain or to have him walking.
If you don't live with a child who has this illness, its very hard to understand. If you don't see it everyday you don't understand. Trying to explain it, is very hard. Everyone has an opinion. Do I listen, I do, unless I feel it starting to get ugly, which it has. I make a decision to stand up for my child and teach or to walk away with my tail between my legs. I've done both. Depends on the day. Some days my outer shell is tougher than other days. I don't like being picked on and I know all too well about that. If I was talking to my parents(which I'm not), I'm sure they would think I did something wrong. He has arthritis because of something I did...Unbelievable, but that's my parents. You would think that parents would be supportive. Not mine. I think most parents are very supportive. Its what we need. I worry, worry worry about all sorts of things. Last night I went to bed thinking Katie could get this and can there kids get JA. I guess yesterdays topic made me upset on so many levels. But the one thing that made me feel great was that I'm not wrong on how I think. All these moms felt the same and that was very reassuring. I think to help us is to support and try to understand . In a course of a few weeks moms and dads are taking kids to have some type of surgery, changing medications, dealing with their kids pain which is heartbreaking, going to Dr. appointments, Rheumatologists, Gastroentrologists
Wednesday, January 5, 2011
It Never Ends
Since Bruce had his Enbrel adjusted this past Nov., he has been doing very well. The physical therapy was helping him to become stronger and his pain has been a no show. What a turn around from 2009 upt til this past Nov.. It took one whole year to diagnose and then to get him on the right medicine. Its amazing what a little adjustment can do and then hey, we find the correct dose and BAM! Bruce felt better. Just a couple of days and he was a different kid. I never rest easy. Bruce's illness is here to stay right now and the scary part is that you never know what is going to pop up. I bug the crap out of Bruce Jr. How are you feeling, are you hurting, why are you walking funny, oh I could go on and on. See, Bruce isn't a complainer. He wont tell me that something is bothering him until I flat out ask him. Even then he normally tells me hes fine. I've explained to him that in order for me to be on top of things that hes got to tell me, so if it can be corrected...it can. I've explained that he has to use his words to tell me how he feels. I wouldn't ask so many questions if he would open up. So when he gets up in the morning and I ask him "how are you feeling?" His response is "No pain!, No Stiffness!, and No hurting!. This works out well and it keeps me off his back. I think that as a mom your kind of waiting for the other shoe to drop. Its an unease when everything is going well. Almost like its been too long, nothing is happening. It might be that for such a long time every day was something new. A flare. A new joint. Severe pain that we don't know where it comes from(scratching our heads). A limp. Fatigue. Weakness. Bowel problems. Medication reaction. You name it , anything goes. Or... I know my child so well that something seems off. Heck Bruce Jr. may not even know it yet. So it also may mean that your gut is telling you something. In which case it is.
Yesterday Bruce had his eye appointment. I was a little worried. We had not gone since last January. At that time he went in to check for uveitis which was clear and then had to come back after the steroid infusion. All was clear and since he wasn't going to continue on the prednisone and we were between doctors it was put on the back burner and we didn't get it done until a year later. Bruce's nurse said at least every 6 months. So I was a bit concerned but all was fine. The doctor didn't see any cells or inflammation but hes on the cusp for glasses. The eye Dr. doesn't want to take any chances so we will be seeing him every 3 months. Bruce still has inflammation in his body and that means he can get inflammation in the eyes as well. Even though its 3 months away its still another thing that I have to keep track of and yes worry about too.
We all went as a family to the playground and Bruce picked up a stick and was acting like it was a cane. He was running around chasing after his sister Katie and both me and my husband noticed Bruce running odd. It just didn't look right. I'm glad Bruce Sr. was there because sometimes I see more than he does, so this was a very quiet sit back and watch for him. I had told my husband that morning that over the last couple of days Bruce's back just didn't look right. His right hip is swollen and I noticed that his knuckles were too. We had talked about going to see an Orthopaedic Sports Medicine Doctor here in Melbourne or off to an All Children's Doctor. During this time he still was using the stick as a cane and it made us wonder if he needed it.
Today Bruce was playing outside, still running funny and he told me his Achilles was bothering him. Later, in the house he was walking on tip toes. He said it stopped hurting. I told him to walk heel to toe and he said it hurt. It stopped hurting because he was walking on his toes! I swear its like pulling teeth to get anything out of him. Bruce brought home the stick and used it off and on through out the day.
So, in a short amount of time that unease creeps back in and you see things that are "off" and you follow through because you have to. We don't know if its something or nothing but it will be checked out. Tonight I will go to bed and wonder if Bruce will wake up in a flare or if his Achilles has calmed down. I will call Dr. N and then make an appt. with an Orthopaedic because we have to make sure his medication is correct and that he doesn't have more issues going on with his back.
It never ends now but maybe with our watchful eyes, gut feelings, and never ending questions we can somehow make this illness stop.
Yesterday Bruce had his eye appointment. I was a little worried. We had not gone since last January. At that time he went in to check for uveitis which was clear and then had to come back after the steroid infusion. All was clear and since he wasn't going to continue on the prednisone and we were between doctors it was put on the back burner and we didn't get it done until a year later. Bruce's nurse said at least every 6 months. So I was a bit concerned but all was fine. The doctor didn't see any cells or inflammation but hes on the cusp for glasses. The eye Dr. doesn't want to take any chances so we will be seeing him every 3 months. Bruce still has inflammation in his body and that means he can get inflammation in the eyes as well. Even though its 3 months away its still another thing that I have to keep track of and yes worry about too.
We all went as a family to the playground and Bruce picked up a stick and was acting like it was a cane. He was running around chasing after his sister Katie and both me and my husband noticed Bruce running odd. It just didn't look right. I'm glad Bruce Sr. was there because sometimes I see more than he does, so this was a very quiet sit back and watch for him. I had told my husband that morning that over the last couple of days Bruce's back just didn't look right. His right hip is swollen and I noticed that his knuckles were too. We had talked about going to see an Orthopaedic Sports Medicine Doctor here in Melbourne or off to an All Children's Doctor. During this time he still was using the stick as a cane and it made us wonder if he needed it.
Today Bruce was playing outside, still running funny and he told me his Achilles was bothering him. Later, in the house he was walking on tip toes. He said it stopped hurting. I told him to walk heel to toe and he said it hurt. It stopped hurting because he was walking on his toes! I swear its like pulling teeth to get anything out of him. Bruce brought home the stick and used it off and on through out the day.
So, in a short amount of time that unease creeps back in and you see things that are "off" and you follow through because you have to. We don't know if its something or nothing but it will be checked out. Tonight I will go to bed and wonder if Bruce will wake up in a flare or if his Achilles has calmed down. I will call Dr. N and then make an appt. with an Orthopaedic because we have to make sure his medication is correct and that he doesn't have more issues going on with his back.
It never ends now but maybe with our watchful eyes, gut feelings, and never ending questions we can somehow make this illness stop.
Monday, January 3, 2011
Bruce Afraid of Mom being Sick
I came home yesterday from grocery shopping and didn't think I was going to make it home in time before I passed out. I must of caught a bug. By the time I got home which I don't remember, I felt sick to my stomach, white as a ghost and feeling like my head wasn't attached to my body. It wasn't pretty. Katie, my daughter put the groceries away and I sat down looking ill and not well. After waking my husband who is on night shift to get up and watch the kids for a couple of hours I laid down and proceeded to go through the chills, aches and a true head on stomach bug! I heard my son keep asking Daddy if all was gong to be OK with Mom? Then I heard him get a little emotional over something my husband said which would of never of made him start to cry. Immediately I thought he feels bad that I'm sick. My husband came in to check on me and I told him to be gentle with Bruce. Hes very sensitive and hes probably wondering who is going to give him his next shot. It will be me but kids don't always think like that. His concern was that Mom was not well.
Today Bruce Jr. couldn't do enough for me. I laid on the couch but every time I moved I felt dizzy and sick to my stomach. He asked me if I wanted the remote, anything to drink, he would make my coffee, never has before:0 and he was always checking on me. I think its nice that my son thinks of me but I'm supposed to take care of him. I started feeling better tonight, except for the fact that every time I decided to do something I would break out in a cold sweat, so not a 100% terrific. Hopefully by tomorrow I will feel better.
I wonder what goes through a child's mind sometimes. I put Bruce to bed tonight and I went in there to say good night and he had tears in his eyes. He said nothing was wrong and good night but that he didn't want me to have arthritis too! He gets scared when I'm sick. I told him that he didn't have to worry and that I was feeling better. We have an eye appointment tomorrow to check for uveitis and he wanted me to come with him. He says hes better when I'm there. I told him that I would be there and that he had nothing to worry about. I had a stomach bug and would feel better by tomorrow. He wanted to know if he could give us arthritis? He was afraid that I could get it. I said no that you cant catch "it". I cant help but wonder what he keeps bottled up inside his little mind. What makes him worry. Is this a result of having a chronic illness? Does Bruce always feel like this? That he did something to make any of us sick when we have a cold/virus etc. A lot to handle for Bruce's small shoulders. This is not the first time he has felt this way and its my job to let him be a kid and not have adult issues to deal with when he doesn't have to. He already deals with enough issues. We probably will be seeing a Dr. about that right hip of his. Its swollen only on one side and it makes him look like he is standing funny. He says no, but it looks odd. With Juvenile Spondylitis, anything with his back makes me sit up and pay attention. Yes, with Dr.'s and meds and shots he has enough to deal with.
So I'm off to bed still a bit sick and with thoughts of my son worried that something is wrong. These are thoughts that will go through my head a few more times. How I will ease his mind to know that he didn't make me sick, its just a virus and that Daddy and I will be there for him when he needs his shots (well just me for this one), medicine and to see the Doctors.
Today Bruce Jr. couldn't do enough for me. I laid on the couch but every time I moved I felt dizzy and sick to my stomach. He asked me if I wanted the remote, anything to drink, he would make my coffee, never has before:0 and he was always checking on me. I think its nice that my son thinks of me but I'm supposed to take care of him. I started feeling better tonight, except for the fact that every time I decided to do something I would break out in a cold sweat, so not a 100% terrific. Hopefully by tomorrow I will feel better.
I wonder what goes through a child's mind sometimes. I put Bruce to bed tonight and I went in there to say good night and he had tears in his eyes. He said nothing was wrong and good night but that he didn't want me to have arthritis too! He gets scared when I'm sick. I told him that he didn't have to worry and that I was feeling better. We have an eye appointment tomorrow to check for uveitis and he wanted me to come with him. He says hes better when I'm there. I told him that I would be there and that he had nothing to worry about. I had a stomach bug and would feel better by tomorrow. He wanted to know if he could give us arthritis? He was afraid that I could get it. I said no that you cant catch "it". I cant help but wonder what he keeps bottled up inside his little mind. What makes him worry. Is this a result of having a chronic illness? Does Bruce always feel like this? That he did something to make any of us sick when we have a cold/virus etc. A lot to handle for Bruce's small shoulders. This is not the first time he has felt this way and its my job to let him be a kid and not have adult issues to deal with when he doesn't have to. He already deals with enough issues. We probably will be seeing a Dr. about that right hip of his. Its swollen only on one side and it makes him look like he is standing funny. He says no, but it looks odd. With Juvenile Spondylitis, anything with his back makes me sit up and pay attention. Yes, with Dr.'s and meds and shots he has enough to deal with.
So I'm off to bed still a bit sick and with thoughts of my son worried that something is wrong. These are thoughts that will go through my head a few more times. How I will ease his mind to know that he didn't make me sick, its just a virus and that Daddy and I will be there for him when he needs his shots (well just me for this one), medicine and to see the Doctors.
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