My daughter who is 3 and a half has jus been diagnosed with JRA. This is very depressing to me and i was wondering if somebody can sahre their experience with me. Thanks.
There are a few gals on here that grew up with JRA. I am sure they will be along soon to help you out!
Hello and welcome to AI! Glad to have you aboard!
You may ask me whatever questions you would like. Keep in mind I am not an expert I was just really sick, I just lived it so it is purely from my viewpoint as a child, then as an adult. Nobody knew about my RA nor really cared to. I was fed Ascripton till I felt like vomiting all the time.
Just remember one single, simple thing that you can thank your lucky stars for. You have a diagnosis. Let me say that again..YOU HAVE A DIAGNOSIS! I cannot say that enough and even as a parent I do realize it is heartwrenching ( my daughter has ADD) To your daughter that is the single most precious part of her being, you know what is wrong so you can cope and deal with your life and hers. It isn't easy,there is no simple solution and it makes your heart feel like it will just jump out of your chest and fall on the graound. I have to say though, I am so happy for your daughter ,I truly am because she will not have to live the life I had to and she will get the much needed medical care she needs. SHe won't have to grow up with the ridicule and the label of a "faker" when all in all she is very ill. BE thankful that she can begin the proper medication and not have to take buffered asprin to destroy her stomach and make her practically hate food.
Listen to her, she will be able to read her body liek a child with seizures, she will feel the pre flare...like the aura in a child with seizures. Help her learn to identify when she does not feel well. Make a huge colorful number scale and teach her how to identify her pain an dstiffness. Most of all, allow her to have fun, do not make JRA her life and name.Don't teach her that this is who she is, allow her to be herself WITH JRA.
If you like you may private message me and I will give you my email address.
jode
Nouna,
I hope that this link will be helpful. Just keep in mind that the RA of today is not the RA of the past. The meds are good and new even better meds are soon to come. Don't be discouraged.
http://www.providence.org/healthlibrary/contentViewer.aspx?h wid=hw104391&serviceArea=generic
LEV
Remember to take care of yourself! When my daughter was diagnosed it was difficult but manageble because I was educated in the field so I knew my resources and tapped into them. You have found this so soon that early treatment and knowledge of diet and low impact exercise can completely help the course of the disease. Allow her to childhood, in other words, let her be the kid she is but that there are limits and she will learn them all on her own believe me.
I Was a child of severe allergies so I learned to read the ingredients on everything to know what to avoid. I can remember doing this at a young, very young age and it did not scar me!
THe medications are different from years ago and I do not want to scare you with my initial post. I think the main point I was trying to make is allow her to judge for herself, teach her to identify and problem solve...and yes, even at 3 years old they can do that.
ENjoy your daughter, the only difference is that you have a bit of a different route to take on your journey, that is all.
As for you, you are allowed to grieve for your daughter.
jode
Dear Jode, you must feel awful that your little one has this. (stuff), but like above you know what she has and how it affects her little body. The JA forum is very interesting and gives some insite into how young people feel, what it does to them and all. I hope you will read the JA forum. I had a sick child (allergic to dairy) he had sever ear aches, his tonsils out at 5, and went through horrible stuff. We were young parents and didn't know WHAT was wrong with him! Fianally, by accident a young doc saw him (the old fart treating him didn't have a clue) said this boy has allergies that are being treated with anti-biotics that just treat the symptoms. He began allergy treatment and outgrew it at 17. I felt like a bad mother, but it wasn't my fault, etc. So don't beat yourself up. This stuff is real weird but there is so much help out there NOW, you can get help for your little girl. Please keep writing so we will know how you are doing. Feeling Better.Ooops, I meant Nouna, with the above post. Forgive me! Hello!!! My name is Katie, and I've had JRA since I was about 18 months old! I'm 23 now, so I imagine I can answer lots of questions if you have any!! *hugs* Just let me know if you need anything, my door is always open! :) Dear Katie, Do you go to the JRA website?Sorry to hear of your daughter having JRA. I have it as well, was diagnoised with it when I was 18 months old as well and I am 27 now.
I would just like to say a few things that I know were overlooked when I was a kid.
If your daughter complains of tummy aches and says she does not feel good, please do not doubt her. When I was a kid I had stomach aches all the time. There is really nothing you can do to make her tummy feel better except maybe sleep. I use to sleep alot when I was smaller, and I still do now.
Let her play as long or as hard as she wants, it is not going to hurt her, but be prepared for her not to feel good the next few days after her hard playing.
Last and not least Welcome to the board! I hope you find the support and help you need for you & your daughter. Best of wishes.
I just remembered about this message board. It was created by a mother with a similar situation. I remember when she first came to this board about a year ago. And not many JRA'er's were on this board so she created one herself for kids with JRA.
Here is the link
http://www.gossiping.net/phpBB2/?mforum=kaytyray
I'm so sorry that your child has this disease as well. The people on here are just awesome. The JRA'ers have taught me so much. They can really help you through this.
Learn all you can. Knowledge is one of the biggest keys to fighting it. Welcome aboard.