Danielle started her pred pack and there has been quite the change and turn around with her. While she is a touch snappy (more than usual for a 12 year old lol), she has had no other side effects from it besides craving of all things....spinach lol. And it has to fresh raw spinach lol. But that is better than craving junk food and sugar.
She is doing very well with the pred pack. The swelling has considerably gone down, the pain is no longer there, even with thepred she is sleeping thru night and not waking in pain, the tenderness has gone away, and she can happily (and I mean happily she has a 10ft grin) wiggle her fingers all the way with no pain. She has shown no signs of fatigue lately and has also not popped a fever either.
The doc did say that if the pred did work for her then we can pretty much count on this being the jra and not the mono like parvovirus he was ruling out. So, that is where we stand right now. I still have to take her for her xrays on Tuesday morning. On Wednesday morning I call the rheumy and update him on how she is doing. I think I get lab work results then too. I am sero negative and I am wondering if Danielle will be too.
So the pred plus the Celebrex seem to be working very well at this point for her. Well enough that I am allowing her to spend the night away from home bringing along a detailed instruction sheet for her pred dosages and what to do for her if she should become fatigued.
So even tho she has JRA, there is hope.
Liz, I sympathize with you - a preteen on Pred.! My son had asthma and there were many times he was on a Pred pack as a preteen and teenager. Besides being "touchy" or downright obnoxious he literally ate everything in sight. Being an adult we have some control over our cravings but teenagers have no control. Am glad she's doing better. Take care.Thanks for the update, Gramma. What wonderful news! I'm so sorry that she must deal with JRA, but for the pred to be so effective is very good news.
Hopefully, it will continue to help her. Kids are usually so much more active than us and it is really noticable when something works wo well. The spinach craving is too funny
I have been thinking of her a lot lately. You both must have a wonderful and knowledgable doctor.
Best of luck to you both.
Gentle hugs,
Nini
It is great that she is doing so well on the prednisone. I am a seronegative too and my doc says my good response to pred confirms it is RA. That is too bad, but better than her spending a year or two without treatment and trying to figure out what is wrong. That was the case with my daughter and me and damage was done during that time. You are treating Danielle right away and that will help prevent damage. How encouraging for her to be able to go ahead with her plans this weekend as well. I hope all continues to be positive this week. Keep us posted.
Laker
Great news gramma! It's wonderful to get a break from pain once in a while. I'm glad her side effects are minimal.
My memory is terrible right now - did her dr give her just a week's worth of pred?
It is weeks worth tapering dose pack. Just like we as adults get. Thanks everyone for the great well wishes and support. Even tho the reaction to the pred just really confirms it is JRA, I am happy to see her returning to her normal self.
I really want to jump in with both feet and treat her aggressively, but I don't want to burn any bridges before we have to. So, I have to calm down and let the Celebrex do it's job. The minute that stops working tho, I will have her in that office and talking about the next step in treatment.
Grammie!
What wonderful news that Danielle is getting some relief. Please keep us updated with her upcoming doctors visits.
Phats
Really happy to hear this Gramma. Despite the diagnosis, it must gladden your heart to see Danielle doing so well with the Pred and able to return to her happy self and also to do some girly things with her friends. I wonder if they will like spinach though?? great news Liz. Glad she is feeling better, it always makes mum feel better when the babies are feeling good.Gramma, I am so sorry that she has to deal with this too. Are you going to try to wean her off the pred? I was never on it but i read the thread about pred and everyone who was on it. I was just wondering. My daughter is 13 and she has growing pains and my first inclination is to take her for a blood test. Anyway, I don't think she has RA (yet) but I was really wondering what your thoughts are on the pred and a young 'un.Super news Gramma! I adore spinach and that craving is so good for her. Maybe she needed her iron levels up a bit. I know I do sometimes.I'm so glad to hear that she is doing better. Andrea has not found out theGlad she is doing better. Me & her talked on IM yesterday and well she has decided I am weird and I told her not to be mopping the streets with all that extra energy and feeling like needing to do something
My thoughts on pred and the youngins are to get them off of it as soon as possible. She may have needed that oomph to take care of her inflammation etc. She is weaning off of it and will be done shortly with it. I hope that the doc says she can stay off of it. They even make pred in liquid form for the little ones that can't swallow the pills. I have many friends on my parents board for kids with ra that their little ones are on liquid pred.
I am VERY happy she is back to her normal self despite the jra. It is just killer to see your kids feeling the way she was. her feeling better has been such a boost in self esteem for her and that is what really counts in all of this. She feels better about her despite having this cruddy disease. That couldn't make me happier.
I am still worried as heck because as we all know, we never know what the future brings.
Lorster...my thoughts are with you and your daughter. I hope beyond hope that it is not ra that she has. That it is something less serious. But as we have talked about before, all the signs are there. Just like with Danielle. Please let us know what the doc says about her. I am always here for you to talk to about that.
Dear ones with sick children. I can so understand. The worry never leaves you for a minute. The kids are very brave and don't want to feel 'different' no matter what disease they have. I hope you both find the right solutions for your children. Sarah, Been there! In fact I'd forgotten the struggles I'd gone through with my little boy and his milk allergies, he was so sick all of the time he couldn't hardly play with the other children. everytime we'd try to do anything 'he was sick with a bad ear ache caused by ustation tubes that would swell and get infected. He suffered so much with the pain, poor little thing. Finally he outgrew it! (had his tonsils out, etc...another nightmare). sarahGramma, This is great news and we'll just pray she won't have to take the pred long. So glad she is doing better and hope she will be pain free for a longgggggg time.
Lori, could your daughter have gout in her hand? I did one time and my hand looked like a red balloon blown up. Thankfully that was about 3 yrs ago and I haven't had it since. It was excruciating for about a week! Good luck and God Bless both your children... Genesis
Hi Gramma, this is great news in one way, Thank God you can see your little girl smiling and having fun, its awful when our kids are sick, and Lorster my hand swelled up like a great balloon when I was pregnant with my 6 y.o, the DRs put it down to carpal tunnel and could not do any tests because of the pregnancy, but unfortunately it was the beginnings of my RA, diagnosed after my 6 y.o was born, I do hope it is not that for you and your little girls sake. Kind regards Janie.
What a mixed blessing! Too bad that this points to JRA, and so good that she's feeling better.
It would be very unusual is Danielle does pop a positive RF. It is not common with JRA.
Let us all pray that she is one of the lucky ones that outgrows the disease.