The doctor has confirmed our worst fears. She is presenting with JRA. Her poor little hands are so swollen and red it hurts me to look at them. Her joints in her hands are very painful and very painful upon exam. He was very understanding and very compassionate with both her and I. He said that now a days they treat JRA in kids her age very aggressively throwing them into a remission that can last a very long time. He also said that there are new and exciting drugs coming out in the next year or so. He personally called my rheumy (they are friends...they used to work in the same clinic together then my rheumy branched out on his own) to see if he would treat Danielle since he normally does kids 13 and up. Danielle is only 12. They said of course he will see her. So she goes in May 23rd at 11am. Soonest appt. I could get. If there is a cancellation they will call me.
She is very scared and very overwhelmed right now. Our family doc was wonderful to her in the office while she was crying. He told her it's ok to cry, he knows this is scary and overwhelming, he knows she is scared because she sees me so sick. He told her when I was diagnosed they didnt have all these meds that can almost totally halt disease process and that is why I am so sick with so much joint damage. He said they have all these meds now like the ones I am on and that he really doubts she will end up like me. He told her that he will be with her every step of the way with this and he will do everything he possibly can for her. That made me cry even harder. You just don't find that in docs anymore.
We are all taking comfort in the fact that we have just awesome docs for her and that they do and will treat her aggressively and are incredibly compassionate and caring doctors as well.
Liz my heart goes out to you and Danielle and the rest of the family. She must be so overwhelmed right now poor baby. And you must be devastated. Give her hugs for me and keep some for yourselfGramma I will continue to pray. I don't know how but God will turn this news into something good, He always does.I am so sorry. It must be very upsetting to you. Your doctor soundsGram; I'm real sorry to read this Sweetie. I know how worried you must be.....but Danielle is very luck to have you. You will know so much more about this and how to help her than another mother without your experience. AND; your doctor is right. Things have changed a great deal since you were dx'ed and the prognosis is likely to be very different for her.
Nothing any of us can say right now will take away the pain you feel. Just know you and your family (Daughter especially) will be in my thoughts and prayers.
Hey Lizzie...I did get to chat with Dani for a while today. She seems to be taking it in stride now. Your girls are strong (wonder where they get that from?) and I think she is gonna do fine with this.. I know it is a shock at first but kids are so resiliant. Ummm....I may have kinda sorta metioned toobing on the river this summer...looks like you may not make it down here alone! Yep..she's still a regular old kid!
Love and hugs to yall...btw..how is big Danny dealing with the news?
I am so sorry. She seems to have a very wonderful mom though and I am sure you girls will help each other through it all. Love and hugsThank you to everyone for your support it means so much to my entire family. Shocking as the news is, we knew this was a possibilty as it is hereditary in my family. We just hoped that it would not rear its ugly head til later in life like my oldest daughter.
She is doing a little better now and it is sinking in that even tho she has this...she will live a normal as possible and still play her sports etc.
Danny for the most part is still numb and is still shedding some tears off and on. I am trying to be strong for her and give the example that our normal lives carry on. Fortunatel she is on Spring Break right now and does not have to go back to school til Monday. It will give time for things to sink in and her and I find resources together of other sites where she can post about her JRA. I will also email her teacher and give her the heads up too.
Once again...thank you to everyone. Your support means so much to all of us.
Gramma, I am so sorry to hear the news but so happy Danielle has such a great support system. And it sounds like the docs are very commited to helping her too.Oh Gramma, I'm so sorry your sweet baby has to deal with this at her age. Because you have RA and were able to spot the signs and get her in to the doctor, she is able to get help sooner.
Your doctor sounds like a truly wonderful human being! You are all so lucky to have him (I don't have to tell you that, huh?) He sounded so compassionate, while being honest with her. That is one thing I know, that you have to treat kids like the intelligent people they are. They will spot it in a minute, if someone is patronizing and untruthful with them.
Hugs to you and your family. Special hugs to your dear little girl! I have 2 granddaughters and really have a special place in my heart for little girls. God bless her! With the help of you and the terrific doctors, she should be able to continue to live a great life.
May you all be granted the peace and strength to deal with this challenge.
Hugs and love to all,
Nini
Danielle needs to talk to me!!! Tell her she's making me sad not talking to me. LOL I'm kidding. But I do wanna talk to her still!!!
I dunno what else to say hun. I love you all. Everythings gonna be a-ok-ay!!!!!!!!!!!!!!!!!!!
*hugs*
Always sorry to hear that RA has caught another person. It is better to get it today than even 5 years ago. With some luck it is possible she will have a cure and so little damage - that it will really be a cure."...Danielle must feel as though life is "picking on her" "
You would have thought that growing up I'd have thought of a phrase like that for how it feels.....but I didn't.
Watchingwolf, THANK YOU, that IS how it feels!!!!!!!!!
She WILL get through it though! You are right, she has a WONDERFUL family (even if her sister is a stinkin teenager..haha luv ya girlie...)
It seems a silly phrase, but you really sumed it up!
I am sorry to hear about Danielle, Liz. I know it is hard for you have another daughter with RA. I am sorry. I hope the best for her, and that when she is put on good meds, she will go into a med induced remission like her mommy did
Huggs to both you and Danielle!
I know I am new on this board but this is very sad for a girl of 12 to have to deal with this stuff. Wrong, wrong, wrong. I want to kick something! (I'm still in the anger stage, can you tell?)
But having just returned from my doctor I know there is some very good treatment options now that was not available even a year ago. She will likely see she cure for this and it sounds like she has the best support ever, family that knows what she is dealing with. I pray she dance at her wedding without ever remembering this day.
DAMN! I'm sorry to hear this! Did the Dr. order lab work? I wonder what her RA factor and anti-CCP values are?! Did the Dr. order any meds for her? If she can't wait until May 23, ask your family Dr. to speak directly to the Rheumy again-he'll get her in right away!
Sorry for all the questions-I just want the best your your girl!
Grammie,
I am so sorry. Please know I'm thinking of you and your daughter.
Take care,
Phats
So saddened to hear that you got the diagnosis you feared for your wee Danielle. She is lucky to have you for a mother, you understand the problems. Thinking positive thoughts and sending prayers for you and your family.I don't know you very well but I am so sorry to hear about your daughter's diagnosis. It is wonderful that she has two good doctors and all your experience to help her through this. Your family will be in my prayers.
Laker
My son was diagnosed with a severe chronic illness when he was 14. My wife and I have struggled with him through some really tough times over the last 6 years. We survived and grew stronger because of our strong faith, strong friends and family, and the unconditional love we have for our only child. I can tell you also have those things...don't lose them and don't ever give up. I will be praying for you.
Alan
Gramma.....I too am praying for you and your family.
all my best
CinDee
I am so sorry. You both seem like such strong people, and your hubbie sounds like he is a very caring support man. I am glad they caught it so soon!!! That will surely help. My thoughts and prayers are with your family.
Karen
So sorry your daughter has to go through this, GS.