I think I have a bruise on my froehead from banging it on my desk all day today!!!
Danielle hit her last couple of doses of the pred pack and has gone downhill again. She did not sleep well last night, her hands and wrists are swollen again, and she is once again fatigued.
I called the doc today as scheduled for her update. There are labs still pending so he is not going to start her on a dmard right now. I am to conitnue giving her the celebrex daily and he added daily pred to it. 10 mg every morning. I was lucky enuf that I was laying down in my room when he called bacdk so Danielle did not see me cry when I got off the phone with him. I am to call back Tuesday to see if labs are in and to update him once again on Danielle.
It hasn't really sunk in yet with Danny that the low dose of pred just isnt working for her and we have to increase it to a daily maintenance dose for now. I was so hoping that the pred pack would just give her the oomph she needs and that be that and we continue on with Celebrex only. Guess that just is not written in the cards for her right now. I am going to mention to him on Tuesday that I don't want her on pred long term and if her labs look ok I want to add mtx and wean her off of the pred.
This is frustrating enuf dealing with meds and combos of them and balancing it out. Now I have to do it with Danielle which is 100x as frustrating because its your kid and she is sick and that SUCKS!!!!
Gramma, I am soooo sorry about Danielle , I know you feel so helpless but sounds like with you and the Dr. she is is getting the best care possible. It is just awful when it is our kids that are sick. I would guess it is worse for you because you really do know what she is going through. I will keep praying for her and have hope that she will have relief soon.... God Bless you all......genesisGramma,
I'm so sorry Danielle is going through such a rough time. I hope she finds the right combination of meds soon so that you both can relax a little. I can't imagine going through this as a child. It must be comforting for her to have you as an expert, but I know the toll it takes on you.
I think I remember you saying that you had JRA,so maybe you don't remember the initial trials with meds. I am old but new to RA and it took some time before I found the right combination. I will be praying for you both and for your older daughter.
As a special ed teacher, I've had a few kids with JRA on my case load. Are her teachers aware of what she's going through and the accommodations she'll need? Does she have a backpack on wheels? A place to store things where she doesn't have to reach far? Does she have an extra set of books at home so she doesn't have to carry them around?
I am so sorry Danielle is hurting. I think seeing your child in pain is much much harder than dealing with your own illness. How soon will school be letting out for the summer? It would be great if she could start mtx soon so it and her pred can be adjusted before going back.
You have been blessed with a great Dr. What is it with labs that take so darn long? I talked to my rheumy almost two weeks after my last bloodwork and he still hadnt gotten the results. He said he was gonna call the lab and put a rush on it. Sheesh.
Give Danielle a gentle hug from me.
Linda, those are all great suggestions!Sorry to hear the pred dose pak is not going to last. It might be the weather affecting her, and after the storms move thru the pred will help her again? I do not know. I just know even if I am on a pred dose pak, if it is going to storm I swell and ache just a little more.
Keep us posted Lizzie, a pred pack really isn't that much pred. I mean, maybe she just needs it for a little bit longer. She really was pretty swollen. The pred pack that I had didn't do it either, I had to do the little bit each day for a month or so before it knocked out the swelling. Maybe she just needs a little longer. I'm not talking LONGer, you know what I mean. I'm sorry hun. :( Just breathe! She'll be okay, and so will you. Everything for a reason.
Hi, I agree, being toooo stressed out about pred right now will make you crazy. The worry is enough, so go with the meds. I've been on pred 2-1/2 months, took 15, then down to 10 , but when I tried to go down to 10 before increasing the mtx, and more remicade it was a bear, I had to go back up. I don't know how much she is getting but it can really work quickly and well for her. As we know the waiting for meds to work is the worst. I'm hoping! take care, SarahI know this may be of little comfort, but she is really lucky to have you as her advocate and mentor in this disease. She has a mom in her corner with intimate knowledge and experience with RA. She is not alone, she has you with her, she has what every child wants.
I hope you find answers for her soon.
Grammie,
I'm sorry that Danielle is feeling badly again. I know the fatigue part of it, I'm fighting that myself. You are a great asset to her. You know exactly what she is going thru and can help her thru every step. Plus your a COOL mom!
Keep us updated!
Phats
gramms, your in my prayers!!!!!
kelly
Thanks everyone...it is all just so dang frustrating. Linda...we have a meeting with the middle school for a 504 plan for next year to make sure she gets the accomodations she needs. Her school now has been great on accomodating her. She does most of her work on the computer at school and at home. She will get an extra set of books to keep at home next year and a back pack on wheels. I can acutally have her bussed to and from the middle school (our town is small and they take county public bus to middle school and high school if they are not in walking distance) for free next year. We are walking distance from the middle school but that worries me on days she is fatigued or flaring from the weather. She also will get a laptop that the district provides for her since writing is so hard for her.
Even with everything going on..this kid has maintained her grades to a high honor roll level. I just don't know how she does it. Or any of our kids with JRA. Their resolve and strength is just amazing.
Linda, I didn't have JRA. I was diagnosed in my 20's with it.
In a way it is a good thing I know so much about ra. The treatments vary slightly with jra now. Enbrel is the biologic they use for jra to start off with. Mtx is most usually done injectable to avoid the tummy upset etc. that you can get with the pill form. Pred is basically the same except for the younger ones that can't swallow pills it comes in liquid.
She is just so disappointed and a little angry at herself right now. She is upset because she can't control this. Much like what we go thru. We talk about it when she wants to. She will work thru this tho and come out shining on the other end I just know it.
Gramma, My mind is like a seive these days.Getting RA at 20 is bad enough. Glad Danielle will be on a 504 at school. I'm teaching middle school now and I know how hard it can be for kids with learning differences and or disabilties. I also know many who rise to the challenge and do really well. Sounds like Danielle is one of those. Sounds like you have things all under control. I assume she will have some provisions for PE too.Not at all the easiest time for you and your family Gramma. I am really sad that Danielle is not so good again. I am sure that your own experiences with RA and positive outlook is going to help her tremendously, but acknowledge sincerely how tremendously tough this must be. God Bless The Princesses of Pain!!! Love and hugsLiz, I can't begin to imagine what you family and Danielle are going through. The physical aspect is bad enough but when you throw the whole mental RA garbage into the mix it's a mess. It's so rough being a preteen and now this. She has a wonderful support system, she's a very lucky person in that respect. You'll always be there for her. You know the system and you know how to work it and I really think that's a large part of the battle.
A pred pack isn't much pred and maybe 10mg will hold until she can start DMARDs. I'll be thinking of all of you. Lindy
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