My daughter who is only 3 has just been been diagnosed with polyarticular JRA. Herwrists, fingers, knees and ankles are affected. I am so saddened and angry. Scared, confused. Overwelmed.
This has been an ongoing thing. Our doctors checked for cancer, which it wasn't, so they said it was just growing pains. Over and over, that's all I was told...it's just growing pains....one day, she was in preschool and could not get off the floor. She had to crawl to a chair and pull herself up. THAT is not growing pains. We finally found a doctor that listened to us.
We are still waiting to hear back about the labwork. Doc wanted to check for Lupas, Lyme disease, etc...hope to hear back by today. Our doc recommends we have her take enbrel...how do you give meds to your child that have the posibility to give her lymphoma? I would appreciate any advice anyone has. My mind is numb right now. She is going to need physical therapy and occupational therapy to try to get back the range of motion she has lost. I am so angry at those doctors! She would not be in such bad shape if they had given us the correct diagnosis.
Kaysi I am so sorry for what you have to deal with but glad you found us. I will try hard to find the link but a new study regarding Enbrel showed that there was not an increased rate of Lymphoma as once thought. I just took my 4th dose and was concerned as well though I am 50.
If my foggy memory serves me right I think that the link was posted here and Hurts or Mark1 posted it.
I will be praying for your daughter and you.
Kaysi, I'm so very sorry for you and your daughter. I can't help you regarding JRA but a few people here can and I'm sure they'll be answering your post. I'm praying for you and your little girl.
You simply follow your Dr.'s advice, tell your little girl that this is whatyou ahev to do to help her feel better an dto stop or at least slow the disease down, and you give her the injection knowing in your confident mind that this is the best thing for her.
I took allergy shots from a severely young age, it just becomes a part of your life. SHe will be ok as long as you keep a positive attitude.....that will probably be your biggest struggle; it was fo rme anyway when my daughter was dx with ADD. In that instant I had a life already mapped out for me and her, and it was not easy, it still isn't.
Hugs!!!!!!!!!!!!! Keep us posted please. My heart aches for you it really does, been there. The tears just dry on your face and you go on and the next day is a bit brighter and your daughter's smile is a bit more precious to you than the day before.
jode
Kaysi,
Here are a couple of links that should be helpful. First and foremost you must be or become a mature, clear thinking adult. Second, it's not the end of the world. Third, there are such good drugs now and even better drugs just around the corner even possibly a cure. Go to this site for things you should know.
http://www.providence.org/healthlibrary/contentViewer.aspx?h wid=hw104391&serviceArea=generic
Go to this site fore info about the latest harvard research about enbrel and lymphoma.
http://www.medicalnewstoday.com/medicalnews.php?newsid=50985
Keep this site in your favorites and check it often for new breakthroughs check out the post about the breakthrough from the isreali biochemist. So many new things happening.
http://www.medicalnewstoday.com/sections/arthritis/
I was almost crippled and in so much pain, not any more. I love the drugs i hate. Prednisone, methotrexate and enbrel.
LEV
Why does this doctor want to start out on Enbrel is my question? I realize
It is horrible that it took so long for them to diagnosis her. I don't know why some doctors don't conceptualize that the very young can be sick just like any other age.
But look for joonie and arriscolwell. They both had JRA all their lives. And, they have turned into such wonderful adults. It's really hard to have a child with special problems. I have a daughter with mental health problems. My sister has a special needs child with ADD and Fetal Alchohol Syndrome (she's adopted). So every day, I learn a bit more about the needs of these special children.
In fact, I'm going to share a very special story with you that my little niece just told her mommy this week. She's four years old and has to live with a feeding tube in her belly button. The other night, she wanted to wear this one particular shirt that says "Jesus loves me" and has pictures of children from all the world on it.
My sister asked her, "Have you ever seen Jesus."
"Yes."
"When?"
"He held me when they put my belly button in."
"Where else have you seen him?"
She pointed to her toy box and other places in her room.
And then she said, "He sleeps with me every night."
Then, she touched my sister who has been going through a very difficult time and she said, "And, he sleeps with you tonight, too."
This is the beauty of the children who grow up needing that extra care. They bless our lives and they know a purity of joy that most people never experience in their whole life.
You just do your best to help her and give her love just like any of us give our children. It is scary to give her medicines and to make to decisions. But the more you support her care, the better off her life is going to be. Be sure to get her in physical therapy. This will help her immensely and will help her recover from what was lost.
Also, find out what kinds of help are available to you. It was a year before my sister found out that she could get a nurse to help or to get the therapies that would help her girl. That's because a lot of times, they don't want to let you know so you won't request the services. But you are going to need this help. Try and find a good case manager that supports your daughter's needs. And, remember to build yourself a good support system. You will have to find ways to take care of yourself so that you can be there for her.
She is going to be alright. It's just going to be a harder road than you planned on. But she's going to be a blessing to your life and the others around you. I am sure of that.
Sorry to hear about your daughter
I have an 8 year old daughter, I watch how she walks and ask her if her knees, ankles, or if anything hurts and I watch to see if I can see anything that might be a sign of JRA, because I now know she is more likely to get it than her brother, but I also watch my son too. I have went as far as not wanting to get him his vaccinations, because there is a theory going around that the vaccinations were what might cause JRA in some kids. I waited until after he was past 18 months old to get the ones he needed after leaving the hospital. I was going to try to get son exempt from getting vaccines, but MIL, the nurse, told me he needed them, and that if he came down with something other than JRA he would probably be worse off, but in my mind if he came down with JRA he would be worse off, because I have been thru it.
What I am trying to say is... I know it is upsetting and breaks your heart for her to have JRA. I would feel the same way if my kids had it too, but I would have the extra guilt that it was my fault because I passed it down to mine. As for the enbrel, it is just something you have to do to help her have as much as normal life as she can, and to help the disease to not progress as fast as it can without meds. I know asprin did not do me any good, at the most it took away my pain for a few hours, but it did not help with the long term damage I have from the asprin not being enough.
I hope you & your daughter the best. Please keep us posted.
Hi Kaysie,
I know this is all very scary for you. Your doctor wants to start her on strong medicine because this medicine has the best chance of stopping her disease. We couldn't say that 10 years ago. All medicines have risky side effects, even that children's tylenol you have given her. What you have to do is work with her rheumatolgist to weigh the risks and balances of the meds verses the disease so you understand both. It is difficult to make such an important decision without all of the information. Unfortunately most of us here do not have experience with pediatric use of enbrel.
You also might find it helpful to find a parent support group in your area. Check with your doctor or local arthrtis foundation.
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
Welcome.I am so sorry your little girl has been diagnosed with this disease. I try and follow as many natural therapies as I can - I could try a lot harder than I doI'm very sorry you're going through this. It's so hard to see children suffer. I hope you can work with your doctors to find a treatment that's right for you and your child.
Dear Kaysi. I agree with everything that is being said. I think the meds will amaze you but it takes time (sometimes months) for them to WORK. You get frustrated and think they won't work for me, but eventually they do. I'm sure your little girl's stiffness will go away. I haven't had any experience with physical thearpy, but I know I wouldn't exercise painful joints until I know 'the meds' have eliminated the stiffness!! Others here may know more. If you read the JA section on the forum (select forum below and go to Juvenile Arthritis you will find people who have been through this a children). The woman is right, children adapt and live through these physical things (my son took allergy shots at 5, after a while he just marched in and had 'his shot' and he didn't have those 'terrible' ear aches that he had before the medication. You will get through this and I'm glad you have the diagnosis. Now, you can work with the doctor. My heart is broken for you, but I know you will let us know how your little one is doing. Write ANYTIME, we've all been there done that!! You are a good mom!!Thanks so much for all your support. I was upset when I posted, today is a little better. I'm saddened for my daughter, but know God has special plans for her. We will do whatever it takes to see that she has a happy normal life. Still waiting to hear the results from all the bloodwork and on the inside feel like I am going to loose it any second. I just want to know everything that's wrong so we can come up with a plan to fight it. It's the not knowing right now that driving me crazy. I'm sure I'll spend all day on the computer researching all the links posted.
Thanks again! I'm really glad I found this board!
Welcome Kaysi! You and your daughter are in my prayers. Good luck and keep posting!
Dear Kaysi, Please keep in mind STRESS, is a major factor for us. The RA reacts to our body being stressed!???We don't have control over our stress, BUT you have control over what messages you sent to your little girl. Try to stay calm, not pass on your anxiety to your little girl (she will see it in your face, voice, and actions) so you can try. I hope you get a doc, people at the desk who feel for your questions (try to make friends with them) and call with even what you feel is the 'least imp" questions. One thing leads to another and you get answers. The office probably has 'openings' that, if you are available on a last minute basis, will see your little girl, if need be. Be firm but nice about what you (she needs).
Daycare, others may help you with that one as it really complicates this.( school did for my little boy. He was walking around in a daze from some pills the doc gave him, I TOOK one myself after a smart mom said 'take one of those and see what happens'! I took it and fell asleep for 4 hours. Don't know how my little boy got through first grade)
daycare is another subject people who have children with this can help you with. It would seem you need to 'educate' the caregivers about everything and ask them to not stress out over this in front of her and make her feel different or strange. Children a smarter and more observant than we think (YOU know this!)
My situation:I worked in my husband's office, so came home when I need to. It was a nightmare though. I felt awful when I found out he was allergic to DAIRY products, It too 5 years, stupidly.!! Many children and people are allergic to Dairy! I found out later.
Anyway, it sounds like you are taking this day to day, hour by hour--and that's good! This stuff is very strange, so don't feel bad that you find it hard to understand. How can our bodies betray us this way? Why don't the meds work quicker? Why do we get flares (those are when we feel especially bad, with more swelling, you will see it after awhile in your little girl.) That's a time to call the doctor's office and tell them, let them enter it into the charts, ask them for more help or they will say 'I can't help you"!! (the worst news but at least they are honest and you aren't thinking there is SOMETHING out there that will help me that I"M NOT GETTING!!
Beware of weekends, and holidays as the offices are never open! If, you think you will need help start Monday morning and keep trying. 'Say my little girl is screaming in PAIN!! That gets their attention. She can't walk, etc.!! They will react.
You are a good mom, you are brave, try to be calm on the outside, methodical and clever to get your baby through this. Please keep writing us as we feel your anxiety. Been there.
Kaysi here is the link that I remember reading regarding biologics and lymphoma.
http://www.nlm.nih.gov/medlineplus/news/fullstory_41192.html
What stress does to us? Could we let Kaysi know the stress that has contributed to our flare-ups and how important it is to try to create an illusion for her little girl? This is 90% working at it. I remember my father 'fooling' me into believing I LOVED ruttabeggas (those are those awful white veggies that look sort of like carrots) we lived on a ranch and he was always growing these things and thought WE had to eat them!! so, he'd do a little song and dance routine before meals, based on the theme these were THE BEST tasting things in the whole WORLD!! So, because we trusted him, loved him we ATE it....or tried to eat it. It was all smoke and mirrors but he tried to smooth over those dumb old veggies. I laugh when I think of it as other parents would FORCE their kids to eat things they hated!! He was a card.Another treatment called AP (antibiotic protocol) that I am on you might like to check out at: roadback.org
Can't have too much info.