How much do you require from your JRA kid?

Arthritis Foundation Forum

Home

Welcome Guest ( Login | Register )

Rate Topic

Display Mode

Topic Options

Author

Message

Kymberli Mundwiller

Posted Monday, August 03, 2009 11:25 PM

Group: Forum Members
Last Login: Tuesday, March 16, 2010 2:36 AM
Posts: 42, Visits: 53

My DD was so bad off tonight, that only 2.5 hrs after her Ibuprofen, she was asking if she could have it again. This morning, she was afraid she wouldn't be able to do VBS tonight. Then, this evening, she said she just couldn't. I tried to talk her into going, and I know that it hurt her emotionally to not want to go over the pain, but she really insisted that she just couldn't. This would mean she would be mostly alone, as DH has to go to bed at 7pm to get up REALLY early.

We started homeschool today, and she did fine after waking up a little more. But, she did not want to go in the van when I had to take the lawn mower into the mower mechanic, and then even late evening, the heat and her pain were the issue. I asked her if there was anymore reason than just the pain that she didn't want to go. She said she just couldn't take the walking. Poor thing.

I didn't get the call from Shriner's today like I was expecting either. Maybe tomorrow.

I do insist she do some chores, although they are minimized when she is this bad. She doesn't try to milk it though. VBS is fun, and she knew it would be (although Wed nights is mostly sitting for a lesson), and she couldn't find it in herself to go. If it was something unpleasant, I can understand, but I thought she could make it through. According to her, she couldn't, and I am sure she was right.

So, as a parent, what do you ask of your children, when they are flaring? When should she just "push through the pain" as the pediatrician said, and when should she sit things out? I just thought it was a little young to say No to fun things, at this tender age. I asked if the other kids looking at her funny was part of her reason for staying home. She laughed and said if they hadn't looked at her funny by now, they probably weren't going to.

Kymberli (12yo DD with probable PR/JRA)

Post #4222486

Top

Suzanne321

Posted Tuesday, August 04, 2009 9:03 AM

Group: Forum Members
Last Login: Today @ 8:04 PM
Posts: 919, Visits: 232

We haven't had to deal with this with my daughter - knock wood - but I have seen enough young adults post things like 'I wish my mom would have let me stay home when I needed to' that I have decided that is what we will do if necessary.

If it is too often, then to me that means we would need a different treatment. I'd also question it if she could go to the mall, but not school, etc., but all in all I think we know our children and can trust them.

Post #4222529

Top

lucylu daniels

Posted Tuesday, August 04, 2009 11:04 AM

Group: Forum Members
Last Login: Tuesday, August 04, 2009 1:21 PM
Posts: 3, Visits: 8

Hi I'm a parent with a 9 yr old that has polyarticular jra and we also homeschool. She is also very grumpy and difficult to read as far as her abilities. She has told me that she has "fibbed" about how she was feeling to get out of things she didn't want to do. I have found that if it is something she really wants to do she will fight with the pain alot more than if it's something I want her to do. She is an only child and I know she loves to see her friends so when she isn't in the mood to see them I know she is not feeling well. Unfortunately, I am not sure we have gotten to a place where her medicines are helping enough. I had tried to avoid what I call the heavy hitting medicines and wanted to try a doctor that would look outside the box. This has lead to a long and difficult battle with doctors and unfortunately I feel as though she is a guinea pig for the medical community. It's no wonder she feels yucky! lucylu

Post #4222551

Top

Mom to Alex

Posted Tuesday, August 04, 2009 1:11 PM

Group: Forum Members
Last Login: Wednesday, February 24, 2010 2:16 PM
Posts: 98, Visits: 181

My guy was diagnosed in Aprl when he was 5...poly...he is now 6. He has some other 'special needs' and I push, a little, but not much. I stop and think about how I feel when say I have a head ache, or more recently a tooth/gum issue...and then remember my one little ache would probably feel like heaven to my little guy. (He's still flaring...although if he doesn't come down with strep like his sister, we will finally be starting Enbrel this weekend.)

So, I don't push him much about leaving the 'safety zone' of our home. Now, is he expected to clean up his room, put away his laundry, clean up after eating, etc...you betcha! But even then I make some acommodations.

Karen and Alex, 6, poly (04/09)

Post #4222590

Top

Kymberli Mundwiller

Posted Wednesday, August 05, 2009 1:26 AM

Group: Forum Members
Last Login: Tuesday, March 16, 2010 2:36 AM
Posts: 42, Visits: 53

TY so much. I think we are going in the right direction. This morning, she was fine. Her flares can be so bad so fast and then so okay so fast, that I DEF think the PR thing is our problem. Today, she did school, plenty of chores without complaint. Her sister had some school to finish from yesterday along with today's, so I had her doing some of her small chores. She complained once, and I told her that just like we made accommodations for her yesterday because of her pain, she is making it up to her sister by doing the table and floor for her so that she can get her school done before VBS. She went to VBS tonight and had a blast. I was soooo glad to see her walking better this morning.

Yesterday, she also said that her knee was swelled up a little. It was her left hip and knee again, although this is a recent thing. When I ask what it is that is hurting her, she doesn't say, "left hip and left knee". She says, "it hurts here and here", while putting her hand on the spot. It used to be her right side that was the issue, then it was both, and now it seems to be the left more. So strange. I could see that after she showed me, but it is hard to see which leg it is she is compensating for, until she tells me exactly.

I was keeping a journal, but I am tired of doing that, and I think since there doesn't seem to be any pattern, there is probably just TMI to put down. When we go to the dr though, it will be easy enough to explain though. Details will just confuse the doc. I still didn't get that call from Shriner's, so I guess I will call the lady myself tomorrow. TY again. Kymberli

Post #4222751

Top

Juile

Posted Wednesday, August 12, 2009 7:35 AM

Group: Forum Members
Last Login: Friday, January 15, 2010 11:32 AM
Posts: 123, Visits: 168

Before we got a diagnosis I was being told my daughter just had hives and a little virus (this was before the joint inflamation got really noticeable). I had already missed a lot of work so I decided to just give her some tylenol and take her with me. She told me she didn't feel good enough, but I did it anyway thinking she was just faking it a little. After a few hours at work, she literally fell asleep sitting up in the chair and her face was pale and her body was just exhausted. Her fever came back with a vengeance. I felt really bad for pushing her like that. I really think the kids know when they can or can't do it. Yeah, sometimes they will fake it, but that's ok too once in a while. The most important thing is getting better right now and when the body needs to rest - rest.

Post #4224791

Top

Jennifer Haveman

Posted Tuesday, September 01, 2009 1:43 PM

Group: Forum Members
Last Login: Monday, January 04, 2010 1:59 PM
Posts: 19, Visits: 23

I know how hard it is when your child doesn't want to do anything even if it is fun. I had this problem with my son several different times before and since the diagnosis of poly, and fescitis at the begining of June. I have had several times were he really was hurting and a few were he just wanted me to carry him so he didn't have to walk. I am sure there might have been some pain even then. I had many different nights that he just screamed in pain after playing hard during the day with his friends. I don't want to hold him back at all but when he had these episodes I wished I could do something more for him and wondered if it was good for him to play that much just to suffer in the end. I never stop him from being active unless he is having troubles with his breathing. I guess you play it by ear.

Good Luck with everything

Post #4228850

Top

« Prev Topic | Next Topic »

All times are GMT -5:00, Time now is 8:54pm

Execution: 0.499. 67 queries. Compression Disabled.