Well, I thought I would share with you something that has been on my mind alot. Our daughter Ciara was recently diagnosed with rheumotoid arthritis (RA). I have heard of this but was not really sure exactly what it meant. Here is some information I found online about RA.
The most prevalent form of juvenile arthritis is juvenile rheumatoid arthritis, or JRA. It affects approximately 50,000 children in the United States. JRA also called juvenile idiopathic arthritis (JIA) because it is very different from adult rheumatoid arthritis.
What Causes JRA?
It's not known exactly what causes JRA in kids. Research indicates that it is an autoimmune disease. In autoimmune diseases, white blood cells lose the ability to tell the difference between the body's own healthy cells and harmful invaders like bacteria and viruses. The immune system, which is supposed to protect the body from these harmful invaders, instead releases chemicals that can damage healthy tissues and cause inflammation and pain.
To effectively manage and minimize the effects of arthritis, an early and accurate diagnosis is essential. By understanding the symptoms and characteristics of each type of JRA, you can help your child maintain an active, productive lifestyle.
Types of Juvenile Rheumatoid Arthritis
Typically, juvenile rheumatoid arthritis appears between the ages of 6 months and 16 years. The first signs often are joint pain or swelling and reddened or warm joints. Many rheumatologists (doctors specializing in joint disorders) find that the greater the number of joints affected, the more severe the disease and the less likely that the symptoms will eventually go into total remission.
The three major types of juvenile rheumatoid arthritis are:
Oligoarticular JRA, which affects four or fewer joints. Symptoms include pain, stiffness, or swelling in the joints. The knee and wrist joints are the most commonly affected. An inflammation of the iris (the colored area of the eye) may occur with or without active joint symptoms. This inflammation, called iridocyclitis, iritis, or uveitis, can be detected early by an ophthalmologist.
Polyarticular arthritis, which affects more girls than boys. Symptoms include swelling or pain in five or more joints. The small joints of the hands are affected as well as the weight-bearing joints such as the knees, hips, ankles, feet, and neck. In addition, a low-grade fever may appear, as well as bumps or nodules on the body on areas subjected to pressure from sitting or leaning.
Systemic JRA, which affects the whole body. Symptoms include high fevers that often increase in the evenings and then may suddenly drop to normal. During the onset of fever, the child may feel very ill, appear pale, or develop a rash. The rash may suddenly disappear and then quickly appear again. The spleen and lymph nodes may also become enlarged. Eventually many of the body's joints are affected by swelling, pain, and stiffness.
Signs and Symptoms
The first signs of arthritis can be subtle or obvious. Signs may include limping or a sore wrist, finger, or knee. Joints may suddenly swell and remain enlarged. Stiffness in the neck, hips, or other joints can also occur. Rashes may suddenly appear and disappear, developing in one area and then another. High fevers that tend to spike in the evenings and suddenly disappear are characteristic of systemic juvenile rheumatoid arthritis.
I was suprised to learn that is not all that uncommon for young children to have this disease. It mostly effects women and most commonly begins between 30 and 50. Men do get it but less often, and there symptoms are generally more severe. Ciara also has psorisis and so this is probably connected. And she probably actually has something that is called psoratic arthritis which is the same thing and is treated the same as RA.
Ciara's RA at first was just affecting her hands, fingers and wrists but is now is beginning to travel to her hips, knees, & back. Mornings are especially hard for her and are when she has the most pain. As the day goes on she does feel better but the pain never completely goes away. It is like at 15 year old living in an 85 year old body. Her rheumatoligist wants to begin some very agressive treatment. This should hopefully help with the pain and increase her movement. The scary part is the drug he wants to prescribe to her is actually a drug used in chemotherapy. Methotrexate is given to cancer patients but is also the "gold standard" in RA treatment. We have to weigh the benefits against the side affects: nausea, hair loss, mouth ulcers, liver damage etc. Her Dr. says that she would be on a very low dose and shouldn't incur the hair loss or liver damage. If she did begin to lose her hair we would stop using that drug and he would be monitoring her liver to make sure it was functioning properly and that there was no damage.
It is hard as a parent to see your child in pain everyday and Ciara just wants the pain to stop. So, we have to make the decision of what to do for you her....let her continue with the her current treatment which seems to not be working so well or give her a very toxic drug which has really bad side affects.
If anyone who reads this has any experience with RA I would love to hear from you. And we would also appreciate any prayers you could send our way as we try to come up with the best treatment plan for Ciara.
12 comments:
I am a friend of Jessica Stevens. I was looking through her friends list and saw this post and just had to comment. My 2 year old daughter has JRA as well and she is on Methotrexate. She was diagnosed Jan. of this year and has been on Metho. for about 4 months. She does get the mouth sores and some nausea. But for her it has helped a lot and we have not experienced any bad side effects. It is the hardest thing to have to watch your child suffer. But with this medication my little girl can get out of bed in the morning! I hope this helps. I understand what you are going through and I hope you post more about your daughter's experiences since she is old enough to talk to you about how she is feeling and what is going on. Feel free to email me if you have more questions.
Thank you
Tamara
tam_sunder@yahoo.com
http://sundermanfamily.blogspot.com/
Sending our thoughts and prayers from Down Under and calling all 5 Austalian Temples prayer rolls tomorrow.
We love ya Jensen familiy!
So sorry to hear this news! You are all in our thoughts and prayers!!
I sure love you guys and am really sad to hear that Ciara is suffering so much. Know that you are all in my prayers. Give Ciara a hug for me.
Just want to thank everyone for your kind words and thoughts. And we will keep you posted.
Poor dear Ciara--I am so sorry she is in so much pain. These auto-immune problems keep popping up in the family. Guillame Barre is similar to RA but attacks th e nerves. Miniear's-I don't know if it is. Jared's disease may be as well. Ask the Doc if she can take lysine to minimize the mouth sores.
I'm sure with such capable and wonderful parents, Ciara will get good care. Marcia
Yeah, it is kinda wierd about the things that are popping up in the family. And the Dr. said to for ciara to start taking folic acid to help the mouth sores. But I will ask about lysine as well. Thanks -- Ciara appreciates everyones concern.
i LOVE you CIARA!!
You are in our prayers! Let us know if we can help in any other way!
Sarah
Jensen fam - and especially you Ciara...I think we met for about 2 seconds when I visited Sacramento - but your family is wonderful @ from what I know....you are TOO!
as my sister says to her cancer kids....cancer sucks.
and now...she also knows ....autoimmune diseases suck too!
I wish you the best...stay positive, even though it is hard....because there are A LOT of things that j.r.a. CANNOT do!
(btw-this is Ian's mom!)
Dyanne,
Thanks for your kind words. It really helps Ciara to know others are thinking of her. And if you do read this I would love to read Ian's mission blog but I am not able to so if you would add me to the list that would be awesome. Thanks again. p.s. my email is ctrcindy63@yahoo.com
Cindy - done!
Please leave a comment or let me know if you can't access his blog. And, the invitation on blogger, as you probably know - only stays open for a month - so please sign in so you can keep access and check often - thanks for your support of Ian and for letting us be a part of your wonderful family's lives - please let your girls in Utah know - that if they ever need a "mom" away from home - I'm only an hour away!
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