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Group: Forum Members
Last Login: Monday, February 15, 2010
Posts: 46,
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My daughter is 13 and has JIA. It started in her knee then moved to the other knee. Now it's in her ankles and right elbow also. She just turned 13 and the normal teenage mood changes are happening, but along with that she is really struggling with why all the health issues are happening to her and blaming herself. She also has fatty liver disease and Hashimoto's disease. She had joint injections in her ankles the end of September and was doing well. She really wanted to play basketball in school so we let her since it was only for 6 weeks. Now she is in the middle of a fairly bad flair in her ankles. The knees are hurting also but not as bad. Tonight driving home she said it's her fault she has JIA and the other health issues,she should have eaten better....etc. I assured her that none of this was any way her fault and it was just the hand she was dealt, that everyone is fighting a battle of one kind or another. She was so sad and it just breaks my heart.
The problem is she's pulling away a little from me. I've offered to send her to a counselor but I'm just wondering if anyone else could give us some help. As her Mom I want to say all the right things and just magically make this all go away, but I can't. I want her to know she is strong but if she has a bad day she can always come to me. How did all of you handle your emotions as a teenager or how did your child handle it.
Thanks for any help you can offer!
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Group: Forum Members
Last Login: Yesterday @ 11:58 AM
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Annette - this board is so slow, you might try reposting this on the RA board where some now adult JRA-ers post. It is busier and I think you will get some replies.
Also, I wanted to try to offer you some reassurance coming from the mom of a healthy middle school girl (my younger one has JRA). At 13, they all have something that is upsetting to them. If your daughter didn't have JRA, she would be struggling to deal with something else at this age. As soon as we get one issue resolved, another will crop up. Other moms share the same frustrations with me. It is a hard age, no matter what.
I hope once she is feeling better, things will be easier. I would try to focus on that - you are going to feel better and this will pass, I know it is hard, hang in there.
It has really, really helped me through all this to know what my healthy daughter was like at each stage - I find myself looking at the disease last as a reason for things in my younger one because I've already been through most of it once already in a child with no disease! And once we hit middle school, all I could think was, 'oh no, we are going to have go through this again......'
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Group: Forum Members
Last Login: Thursday, May 27, 2010
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Hi Ann,
I was diagnosed with Ra at the age of 4. I am 29 now. So having lived most of my life with this disease I can tell you with great confidence that just knowing my mom would listen to my moments of self doubt and wondering why this was happening to me helped so much. Sometimes between the side effects from the meds and pain from the disease mixed with the pressures of being a teenager it can be hard to deal with. I was very lucky to have a mother who was extremely patient with me even when I wasn't very patient with her. My mom would always remind me that I am a strong person and that we will get through it. Sometimes just letting me cry or express my frustrations while she hugged me was all I needed to feel better and continue on with my day. Having said that, having a positive attitude is the best way to combat this disease. It sounds corny, but its true. If we focus on the bad it is very easy to let the disease control us. Let her cry if she needs too, but remind her of the positive as well.
Also when I was her age it was extremely important to fit in. I didn't want people to make a big deal out of me or my disease or limitations. Try to treat her like any other 14 year old. And my biggest piece of advice for young people with JRA is to keep moving. Try not to let your range of motion go. My disease was very aggressive and I lost a lot of movement in my wrists and neck. To this day I wish my doctors would have been prevent it before it was too late.
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Group: Forum Members
Last Login: Friday, May 11, 2012
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I had terrible pain around age 10. Wasn't diagnosed till older. It sounds like your daughter is angry at her disease. I'm still angry at times 26 years later. I thnk a good support group where she can meet other kids with RA, talk out their frustrations etc may help. Right now she feels different and sickly. Look how good we can sometimes feel just by posting on the board knowing we aren't the only ones in pain, getting advice, moral support.
RA 30 years and counting, Advanced Osteoarthritis. MTX, Humira, synthroid, tenormin, prozac, nexium, esgic, ultram, vit. D, calcium, folic acid, bentyl
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Group: Forum Members
Last Login: Sunday, January 02, 2011
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I hope it's ok for me to post here. I don't have a child who has this disease, but I am a mom of a 34-year-old young man, and I have been around lots of kids in my life, and 13 is a very tough age under the best circumstances.
The best thing your daughter has going for her is she has a mom like you who loves her so much that you'd post here and ask for help for her. She's a blessed young lady! 
As mothers, we want to spare our kids any pain, and though your child has extra pain, she's still a "normal" teenager with all the problems of a teenager, plus one extra huge hurdle! I feel terrible that a child has to suffer this; it's hard enough on us adults. I have RA--got it in my late 20's/early 30's, and I'm 53 now--and I can't imagine being a teen with this. That's the time you're trying so hard not to stand out and just to fit in.
I'd agree with a former poster who recommended you treat her the same as if she had no disease, with the exception that you make allowances for her physical limitations, of course, which I'm sure this other poster meant as well.
Keep reassuring her that nothing she's done caused this disease, she doesn't deserve it, and you will be with her to help her in this battle always. Love heals lots. It won't heal her disease, but it will help her to know you're there and listening and trying to understand and hearing her and she's not alone. Have her post on here; I know a young lady on the Rheumatoid Arthritis message board who just turned 16, and she's had JRA since she was 4 years old. Maybe they could email? Just a thought, and I hope I haven't intruded. I just wanted to encourage you and tell you what a wonderful mom I think you are! God bless, and I will send up a prayer for your precious girl and for you, too! God bless and hugs.
http://www.Feedthechildren.org/
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Group: Forum Members
Last Login: Monday, October 04, 2010
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Hi Annette,
My name is Nicole, and I have had Fibromyalgia since I was 14; I am now going on 24. I can relate to what your daughter is going through. It's tough enough being a teenager today without all the complications Arthritis can bring. Your daughter did NOTHING to bring this on herself. If she won't believe it coming from you, perhaps her doctor can talk to her and try to explain some of the causes (or rather theories of the causes) of Arthritis.
Research into her disease can also give some hope, at least it did for me. I read everything I could find, trying to understand how my once very healthy and active body had decided to revolt against me. In the beginning, I felt as though I had done something to cause this to happen to me, but the more I learned, the more I understood that this was something outside my control. Yes, there are things now we can do to try and allievate our pain, but there was nothing that came before we could have prevented.
My mom and dad struggled for so long, trying to help and comfort me. Knowing that they understood what I was going through and accepted me was the biggest, best thing they did during my early years with FMS. Keep telling your daughter that she didn't cause this, keep encouraging her to socialize and be active. Keep being that soft place for her to fall. You will get fustrated and perhaps even tired of telling her you understand she hurts, especially when she fires back the, "No, you DON'T understand," retort, but please know that she is not mad at you. I did the same to my parents, but it was never directed at them because they DID know. They saw how great a struggle everyday was for me. I was angry that no one else seemed to know, that everyone else seemed to blame me, as though it was something I had done to get more attention, get out of school, get out of chores, etc.
Counseling helped, too, especially seeing a therapist who specialized in chronic pain and illness. At the places I went for physical therapy, the older women took me under their wings and were tremendously supportive and helpful. It was wonderful to know there were other people who did believe me, who would always be there to talk with and would truly know what I was going through. These women acted as sort of surrogate mothers or aunts; they knew from their own experiences what I was going through, so in some ways, talking to them about what was going on with my medications, my pain, my doctors, etc. was more therapeutic than talking to my mom.
I guess, all I can say is keep encouraging your daughter. Keep being there for her and look together for outlets she can use to allievate her pain, both physical and emotional. Be her strongest ally. Just keep being there for her. Annette, I can tell from your post you are a loving mother. I know from watching my mom that it's hard to believe when your child is so unhappy, but trust me. The encouragement you give her now will build and help her grow into a woman with the confidence and ability to care for herself both physically and emotionally. I could not have had the faith in myself to keep fighting without my Mommy (and Daddy).
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Group: Forum Members
Last Login: Sunday, April 03, 2011
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Hi Annette, I know you've had a number of replies already but I thought I would add my thoughts. I was diagnosed at 12 and everything you wrote was like a flashback to my childhood. It's difficult, but I completely understand. I'm also helping out a 13 year old girl right now who is going through the same thing as well. It's a difficult time with RA and without. She will get through it, though. The best thing I had when I was younger and what I recommend to everyone who has a child going through RA is to find someone else out there who has RA as well for him or her to talk to. Just knowing someone else out there has gone through the same thing is the best medicine. No one else can fully understand what you go through than another person with Arthritis.
And then to add, I just posted about this a second ago, but I started a blog and will be posting about growing up with RA and how I deal with it now that I am in my mid twenties. I'm hoping it can help parents and children going through the same thing to know that there are others out there living with it and living happily. Here is the link http://lydaclark.blogspot.com/ I hope you take a look at it and let me know what you think. And I am more than happy to talk more about this with you. Please let me know
Lyda
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Group: Forum Members
Last Login: Sunday, April 03, 2011
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Hi Annette,
I was diagnosed when I was 12 years old and now I'm in my mid twenties. It's difficult and everything you explained was like deja vu for me. I went through all the same things that your daughter is probably going through. My biggest recommendation is to try to connect with someone in your area who has arthritis and can talk to your daughter. My mother has a friend who is in her 30s and when I was a teenager, she helped me get through a lot of my troubles that my parent's couldn't relate to. And just knowing someone else out there has RA and has gone through the same things I was going through was enough for me. It helped me realize that you can live a perfectly normal, happy life with RA.
I have a blog http://lydaclark.blogspot.com that I recently started because I met a young 11 year old girl who was diagnosed and I was trying to find something online that she could relate to and connect with. Unfortunately I couldn't find anything really so I decided to create my own. I hope this might help you and your daughter to check out and let me know what you think.
It will get easier. Being a young teenager with arthritis is awful, but she is probably a lot stronger than you realize. Hope I can help you through this situation :-)
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Group: Forum Members
Last Login: Saturday, September 24, 2011
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hi,
just joined arthritis foundation, I hope I can offer you some help with your daughter, I too have ja, I have had for over forty years believe me when I tell you it gets way better. Today nobody knows I have it but I do all over except for my feet.What I do know is I look at it as a gift now.What I have done all these years is watched my diet, I cook all my own foods, juice everyday drink wheatgrass and exercise at least four times a week at the gym. You must keep on moving even when you dont want to, I remember when I was your daughters age, my dad had a girl come over the house with ja and I did not want to meet her because then I had to face up to it and I couldnt.If I could tell you anything I will tell you just keep on moving, it gets way better I promise!!!!
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