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Tuesday, November 26, 2013

My Youngest has "Juvenile Idiopathic Arthritis"

This is a personal blog article about my daughter, she's only 5 years old, and she recently was diagnosed with "Juvenile Idiopathic Arthritis."

Let me back up a little bit. I enrolled her in preschool gymnastics in September 2012. She really enjoyed it. I noticed she wasn't as flexible as other kids, but I just assumed she'll eventually "catch up" in time. She was only 4. The instructor came up to me and said she seems to be having a hard time with her right wrist. She cannot bend it 90 degrees. She showed me, if you "pray" and lift your elbows up, your hands should still be touching. Like this:

She couldn't. Only her fingers can touch but not the bottom part of her hands. I kept her feedback in my head. I figured, she's only 4... no gymnastics prior, so maybe this class will help her!

So, here came April 2013, I took her to her annual check up, near her 5th birthday. I mentioned what the gymnastic instructor told me. Her doctor looked over her wrist, and noticed that she does have a problem. She looked it up, and told me she assumed, it could be a case of "Madelung's Deformity," but she'd like to have her wrists x-ray to make sure. We went next door to get xrays done. And scheduled an appointment with a orthopedist, and waited several months for an appointment. We finally came in, and the specialist looked over her xrays and confirmed that it is NOT Madelung's Deformity. She agrees that there is
something wrong with her wrist, so she referred us to a rheumatologist that is an hour and half drive away. So, we made another appointment immediately. That was last Thursday. 

We got there late because of a huge accident on the freeway, but they were understanding. The specialist asked me 1000 questions, mostly about family history, current history, etc. And she looked over the xrays, and examined my daughter, and confirmed it is "Juvenile Idiopathic Arthritis." She explained, that it can fall into many different categories. My daughter is in the oligoarticular group. And it's not THAT serious, it's like a hiccup in her life. She never had an injury, or never gotten really sick. "An unfortunate combination of these unknown factors in certain genetically susceptible children leads to an abnormal and overactive immune system that results in painful, swollen joints."

Wow. I stared at the doctor like a deer in the headlights. I had a hard time wrapping it in my head.  First of all, I never even heard of it. And I thought only old people gets arthritis. She's only 5... She's still a baby.

The doctor gave me a thick red folder full of information about arthritis in children. And scheduled another appointment, for a follow-up and occupational therapy. I also had to make another appointment for ophthalmology.  She will have to have an eye exam every three months for the next several years. Wow...

We walked out and I was still trying to comprehend it. Do we have a long battle with it ahead of us? Is it just a short term thing? I was utterly clueless. 

That same night, I must have done three to four hours of reading about it online on my ipad. The more I read, the more scared for her I get. I had to breathe and take a step back and remind myself, that it's not all that serious like the doctor told me. Yes, there are scary stories about kids with arthritis. 

I am searching for some kind of support group. I thought I found several on Facebook, and asked to join, but I haven't been accepted into the group yet. I am actually going crazy, because I do want to find support for my daughter. Will she get worse? Will the medications and therapy help? Am I making a mountain out of a molehill? Will she remember this when she's 15? I had more questions than answers.

I wrote this blog to help raise awareness about JIA, and if you do know anyone, or anybody who happens to have JIA, I would love to hear from you. 

Thank you.


poppy lovesaparty said...

My sister was diagnosed with psoriatic arthritis at age 13. At the time the only medication to help was aspirin. She took 20 a day which caused her to develop an ulcer in her 30's. She is amazing in dealing with the pain and the limitations years of wear and tear of her joints has caused. She is an Assistant Attorney General and the go-to expert on open records. I have never heard her complain. We seem to have a genetic predisposition to autoimmune diseases. I was diagnosed with rheumatoid arthritis fifteen years ago. The medications available now are amazing. I know that you are worried sick about your daughter right now. There will be good days and bad days and sometimes extended periods of good days. Allow your daughter to share her feelings about the disease. Help her to accept the difficulties as they come. Don't treat her differently than other children and she will surprise you with her strength. Good luck in the days ahead. P.S. Stay off the internet. It will make you crazy.

Rachel said...

Oh Amanda.

My heart is sad for you because I know what it feels like to sit and try to absorb the news that your child has a medical condition. It's hard and you would do anything to take it yourself.

I am so thankful that she is such an otherwise healthy beautiful little girl - and that she is still able to be active and enjoy things. And who knows... maybe the fact that she signs with you is a silver lining to your deafness and has helped her?!

I am no help here... you got some great advice from Poppy... I am just praying for healing for her, and for wisdom for you in all the decisions you and John make. And for peace for your heart.

Thankful for you, friend.

Caroline Liddle said...

So sorry to hear about your daughter and like Rachel I feel that Poppy has given you some great advice. I am not sure if this site is of any use to you but there is an online support group which you may want to check out at

All the best.

Furry Bottoms said...

Hmmm, I was diagnosed with some kind of arthritis when I was 11. I had to get cortisone shots in my wrist several times over the course of a year. Had to wear a brace to protect the area. It really did not limit my life, I just couldn't really do volleyball or backhanded gymnastics where you had to bend your hand back at a sharp angle. But other than that, life went on like normal. Your girl is beautiful and so so so funny, charming and strong... she is going to be able to overcome this. I was 11, and I am now in my 40's... my wrist hasn't bothered me in years. It just feels like one of those minor annoyances of life. Like having a period every month you just put up with it because its part of life. I am sorry you have to experience this and watch your child go through this... but if she is going about life like normal, let her. And your friend Poppy said, stay off the internet. it will make you crazy. I agree. My Dr told me to do the same thing. The internet just freaks you out because the information is generalized, not personalized for an individual. The info on the web is not about Sami. So try not to let it become bigger than it needs to be. Hugs, my friend. Take it one day at a time.

James Ronald said...

It is difficult to say exactly what it is based on the info you provided. I would say though that it's either Achilles Tendinitis of a condition called Plantar Fasciitis.

Jessica Wood said...

My daughter Imogen was diagnosed with Polyarticular Juvenile Idiopathic Arthritis in Feb this year. She wasn't even three years old.
I remember feeling so alone after diagnosis. I didn't know anyone else who had a child with this disease and we were literally just given a diagnosis and shoved out of the door by the local hospital.
One of the first things I did when we were settled at home was Google, to see if there was anything out there for parents with children who have arthritis and other than places who gave lots of information, there wasn't much where I could discuss things with other people going through the same things.
I have talked to a few arthritis parents since and everyone has said the same. There are no real places to go to talk to others in the same situation.
So the idea of Our Arthritis Journey was born. I believe there is a real need for somewhere to share our experiences, get advice and support if we need it, and also somewhere for the younger sufferers to have somewhere to chat and talk to others like themselves.
I have been on many forums throughout my life dealing with many different things. I decided that having a forum would be a good place to start. That way people could join, see that they weren't alone and that there were many other people going through the same thing.
The forum opened yesterday (16.12.13) and we have 5 members so far. Eventually I would love this to expand and be a great community for people to come and discuss anything, from the weather where they are, to the next step in treatments for their child. Also it doesn't just have to be for parents, it can be for grandparents, aunts, uncles, siblings or anyone else affected by the bombshell that is JIA. Because the one thing we all know is that JIA does not just affect the child, it has a knock on effect for the whole family.
I was wondering if you could please share these links for us so that other parents in our situation could find us.

rkramadh said...

I just found you via someone's pinterest. My prayers and very best wishes for your family. I am not an expert but am familiar with auto immune conditions like spondylitis. One of the things most don't know but does work is avoid certain foods or use relaxation techniquest to suppress the immune system. Your girl is still young, can't imagine stress but please keep that in mind when she gets older and if she has any issues. Please consider alternative/adjunct therapies along with meds if need be. They really do help. Examples are drinking tart cherry juice, avoid tomatoes etc. Apple cider vinegar helps neurtalize acids IF she has high uric acid content. All will be well, may God give you strength and peace.

Anonymous said...

Hello ~ Since wheat (and grains) but wheat in particular can cause problems with all sorts of ailments, one of the things I'd try is total elimination of wheat. Pretty much means no processed foods but just real food like meats, eggs, lots of veg, good saturated fats like coconut oil, avocados, butter, nuts.
Wheat apparently plays around with our auto-immune systems. It's worth looking into further.
Yes, the internet is a confusing place for advice but also a wonderful resource. Read lots and learn to be discerning.
Best wishes to you and your little girl.

dolphinlover said...

I just read your post. My daughter was 7 when she was finally properly diagnosed with polyarticular juvenile rheumatoid arthritis, which is now called JIA. She is now 23. I have undifferentiated mixed connective tissue disease and my Mom had lupus. I have been very involved with the Arthritis Foundation over the years. Please feel free to contact me with any questions. If you have not been informed by anyone yet about the free one week camps available to children with arthritis I would be happy to tell you about them also. This was by far one of the best experiences of my daughters life.