The doctor was shocked with how many questions I had for him. Trevor's recent illness brought so many more questions of what to do. Etc. he decided since Trevor was so inflamed he wanted to also give him Toradol to help with the pain and inflammation. This was probably the worst he has ever been when the doctor saw him.
He increased his methotrexate back to 6 pills and gave him a prescription for prednisone just I case he did not feel better in a few days.
Dr. Eanett had told me to get the dosage he is on with all the pre meds and Remicade. He said since the doctors are so far away, it would be a good idea for me to know this. Of course it would. Sometimes, I just don't think of all that medication too! Anyway he is on:
Tylenol- 325 mg
Benedryl - 12.5 mg
Solumedrol- 500 mg
Remicade- 400 mg
The other question I wanted answered was when and not when to take methotrexate. He said the general rule is not to take it until 2 days after a fever and 2/3 days after starting an antibiotic.
He said it was okay to miss a week of methotrexate if he was really sick like before. This helps a lot. I never knew what to do and would get mixed answers from nurses and other doctors. Now I know.
He was concerned with Trevor still having headaches all the time. He wants him to see a neurologist. He recommended All Children's Hospital. I have called to begin the referral process.
All I know is that he feels better. That Toradol and Remicade really helped him. For the first time he was looking forward to this infusion. I hope we stay well and continue on this course. I love life when it seems "normal" and my biggest stress at the moment is having him clean his room!
Wednesday, February 20, 2013
Saturday, February 9, 2013
We are almost there
Trevor's next appointment is Monday. He has not been able to have his infusion since he was so sick. He finished his antibiotics and has been off of them for a few days. So far, no sickness. I hope he responds well and quickly to the infusion.
This has been another really hard week for him. He missed Tuesday and was late on Thursday because of arthritis pain. He decided on Thursday night he would get up at 5:30 a.m.so he could feel okay to go to school by 7:10 a.m. It worked. He took a bath, soaked for a while and just got himself going. Side note: He used to be like me....10 minutes and he was ready to go. He would brush his teeth, wash his face, contacts, and get dressed.....done.
I hope Monday helps and he feels much better. He was there for a little while in December. Stupid, flu (sick) season.
This has been another really hard week for him. He missed Tuesday and was late on Thursday because of arthritis pain. He decided on Thursday night he would get up at 5:30 a.m.so he could feel okay to go to school by 7:10 a.m. It worked. He took a bath, soaked for a while and just got himself going. Side note: He used to be like me....10 minutes and he was ready to go. He would brush his teeth, wash his face, contacts, and get dressed.....done.
I hope Monday helps and he feels much better. He was there for a little while in December. Stupid, flu (sick) season.
One year ago
It has been one year since Trevor was diagnosed with juvenile arthritis. In some ways I cannot believe it has been that long and others it feels longer. I have learned many thing throughout this year, some good and some not so good. But one thing I have learned (actually just recently) is when your child feels good, embrace that time. Let them embrace it and allow yourself to embrace it. Just relish in the "normal." You never know what is around the corner....hopefully continued normal but for us it has not been (so far).
A dad walked into the school where I walk talking about his daughter being referred to a rheumatologist for JA. I talked to him for a while....enough to let him know I could help him find answers and talk about what his daughter is going through but not enough to scare him. I gave him my phone numbers and hope to hear from his wife one day soon. I immediately thought back to one year ago and I was standing in his place. The unknown, the sadness, the fear, and the "What the heck is this?" My vocabulary has definitely increased since that time but what I didn't want to tell him was that I am still there. Yes, I know a lot more, I can say some "big" impressive words but I am still sad, scared, and everyday say, "What the heck is this?" There is not a day realistically probably an hour that does not go by that I don't worry about Trevor's future and if this horrible disease will ever go away.
Many people relate this disease to a roller coaster. At first I did not think so but now yes. One day he is up and the next down(heck even within an hour). This disease has effected our family structure, friendships, Trevor's schooling, his attendance record, every aspect of our lives. "They" say don't let the disease control you, but how can that be avoided? It literally affects every part of our life. I know I am about to be committed so I cannot even imagine how Trevor feels. He has to endure all of the emotional side of it but feel the pain. He is much stronger than me. I just could not do it. I am proud of how he handles the disease and admire him for it.
I hope next year I can write something much more positive about Trevor's health and where he is on this journey. For now, we just have HOPE!
A dad walked into the school where I walk talking about his daughter being referred to a rheumatologist for JA. I talked to him for a while....enough to let him know I could help him find answers and talk about what his daughter is going through but not enough to scare him. I gave him my phone numbers and hope to hear from his wife one day soon. I immediately thought back to one year ago and I was standing in his place. The unknown, the sadness, the fear, and the "What the heck is this?" My vocabulary has definitely increased since that time but what I didn't want to tell him was that I am still there. Yes, I know a lot more, I can say some "big" impressive words but I am still sad, scared, and everyday say, "What the heck is this?" There is not a day realistically probably an hour that does not go by that I don't worry about Trevor's future and if this horrible disease will ever go away.
Many people relate this disease to a roller coaster. At first I did not think so but now yes. One day he is up and the next down(heck even within an hour). This disease has effected our family structure, friendships, Trevor's schooling, his attendance record, every aspect of our lives. "They" say don't let the disease control you, but how can that be avoided? It literally affects every part of our life. I know I am about to be committed so I cannot even imagine how Trevor feels. He has to endure all of the emotional side of it but feel the pain. He is much stronger than me. I just could not do it. I am proud of how he handles the disease and admire him for it.
I hope next year I can write something much more positive about Trevor's health and where he is on this journey. For now, we just have HOPE!
Thursday, February 7, 2013
Ugh!!
When will this ever end? Trevor missed school again on Tuesday of this week and was late on Thursday. He hurts so much more in the mornings. He says he feels like he is on fire.
Tomorrow morning I am going to put his heated mattress pad when I get up,an hour before he gets up to see if that helps. I guess I will have to get him up earlier so he can get use to things and get moving. I feel so bad for him but so frustrated at the same time. I like consistency and this disease is everything but that. If it is driving me crazy, I can't imagine what it is doing to him.
We go to the doctor on Monday for a treatment and to see the doctor. *as long as he does not get sick*
This morning he told me I never let him do anything. I went to work crying. I just want him to improve. I feel like he is going backwards. His back and neck hurt every day now along with his fingers, toes, wrists, knees, feet, and heels.
He was invited to a birthday party this weekend that is at Fantasy of Flight...rope courses and zip lines. Can/will he do it? Of course! And when I take him to the doctor on Monday he will be horrible. I've tried to tell him to take it easy and not feel like he has to do everything but I know him. He will try it. And these are his core friends that all know that he has juvenile arthritis. He is his on worst nightmare!
Tomorrow morning I am going to put his heated mattress pad when I get up,an hour before he gets up to see if that helps. I guess I will have to get him up earlier so he can get use to things and get moving. I feel so bad for him but so frustrated at the same time. I like consistency and this disease is everything but that. If it is driving me crazy, I can't imagine what it is doing to him.
We go to the doctor on Monday for a treatment and to see the doctor. *as long as he does not get sick*
This morning he told me I never let him do anything. I went to work crying. I just want him to improve. I feel like he is going backwards. His back and neck hurt every day now along with his fingers, toes, wrists, knees, feet, and heels.
He was invited to a birthday party this weekend that is at Fantasy of Flight...rope courses and zip lines. Can/will he do it? Of course! And when I take him to the doctor on Monday he will be horrible. I've tried to tell him to take it easy and not feel like he has to do everything but I know him. He will try it. And these are his core friends that all know that he has juvenile arthritis. He is his on worst nightmare!
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