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DD just diagnosed with juvenile arthritis
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amother




Maroon
 

Post  Tue, Jul 11 2017, 4:55 pm
My daughter was just diagnosed with juvenile arthritis. She has signs of arthritis in her hips and tendinitis in her knees. She is now on an anti inflammatory. Can anyone give advice etc
Thank you.
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amother




Floralwhite
 

Post  Tue, Jul 11 2017, 4:59 pm
Is she under the care of a pediatric rheumatologist?
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amother




Maroon
 

Post  Tue, Jul 11 2017, 5:00 pm
Yes just saw one last Friday. But would like to hear from others experience to make sure we are on right track.
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amother




Blonde
 

Post  Tue, Jul 11 2017, 5:09 pm
Fellow JRA mom here. Just wanted to offer empathy for this journey. I hope your child gets symptom relief soon and that the disease remains under good control.
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amother




Floralwhite
 

Post  Tue, Jul 11 2017, 5:10 pm
Keep taking her regularly. Doc should be seeing her often and knowing about how things are going so he can adjust treatment early as necessary.
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amother




Maroon
 

Post  Tue, Jul 11 2017, 5:49 pm
Dr put her on naproxen. Sent us for bloodwork, X-ray, eye dr. Told us to come back in 4 weeks. Will prob want mri and physical therapy and may change meds.
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amother




Blonde
 

Post  Tue, Jul 11 2017, 6:18 pm
amother wrote:
Dr put her on naproxen. Sent us for bloodwork, X-ray, eye dr. Told us to come back in 4 weeks. Will prob want mri and physical therapy and may change meds.


This is standard first line treatment for polyarticular JIA. Likely the doctor will move her up to a biologic drug next. The best advice I could give you is to follow the rheumatologists advice very closely for the best long term results. The current research shows early and aggressive treatment yields the best long term outcomes for our kids.

We also moved up the ladder in terms of medication classes, and my child is doing very well now on a biologic.

How are you feeling emotionally with all this?
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amother




Maroon
 

Post  Tue, Jul 11 2017, 6:25 pm
I plan on following dr's advice. Already started meds. Did X-ray and bloodwork and made appt with eye dr for next week.
Right now I am feeling overwhelmed as a lot is happening at same time. Same DD also has massive ear infection from swimming and her ear drum ruptured. I am more worried that she will go swimming tomorrow when she is not supposed to than the JIA right now. I know I will get thru this like I did other issues in past. I am looking for advice as I don't want to miss anything more - it took a while from when pain started until she was diagnosed.
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amother




Floralwhite
 

Post  Tue, Jul 11 2017, 6:47 pm
amother wrote:
I plan on following dr's advice. Already started meds. Did X-ray and bloodwork and made appt with eye dr for next week.
Right now I am feeling overwhelmed as a lot is happening at same time. Same DD also has massive ear infection from swimming and her ear drum ruptured. I am more worried that she will go swimming tomorrow when she is not supposed to than the JIA right now. I know I will get thru this like I did other issues in past. I am looking for advice as I don't want to miss anything more - it took a while from when pain started until she was diagnosed.

I don't know if this is a comfort to you but just know that this is normal for JRA and you haven't missed anything.
Refuah Shelaima!
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amother




Blonde
 

Post  Tue, Jul 11 2017, 6:49 pm
It sounds like your doctor hit all the right bases and that you are in good hands. You will be developing a long term relationship with the rheumatologist so trust and communication is key.
In my experience, pediatric rheumatologists are exceptional physicians. I went to many for my child to get opinions, and I was struck by how compassionate, knowledgeable and wise they all were. They are also very holistic in their approaches because they look at whole body systems and how they interact.

In terms of treatment, there will be a little t of trial and error along the way because each child responds differently to the meds. The goal is medicated remission, where the symptoms are completely controlled by the meds.
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amother




Purple
 

Post  Wed, Jul 12 2017, 4:41 am
My dd age 2.5 was diagnosed a year ago. It's been an interesting ride with a lot of ups and downs but we had a follow up with her rhumo in Chop yesterday and bh got good news for the first time! She has no active inflammation! So we can wean her off the neproxen. She'll be on Humera at least for another couple of year but it's been doing wonders for her! Feel free to email me with any questions at jrainfo123@gmail.com
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amother




Maroon
 

Post  Wed, Jul 12 2017, 5:38 am
Thank you everyone for your replies. They were very helpful.
Purple I may take you up on the offer if I have any questions in the future.
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mandksima




 
 
 
 

Post  Wed, Jul 12 2017, 5:44 am
This made me think about this:
A friend of mine's young daughter was diagnosed with arthritis incorrectly until a celiac diagnosis was made. Her husband is a doctor and no one made the connection. I wonder if all these new cases of juvenile arthritis could be related to the amount of new cases of celiac (it's really high and doesn't always get diagnosed right away) as just undiagnosed celiac. It pays to find out for sure if your child was never thought to be tested as it is rare for gluten to interfere like arthritis but it can! My friend's child's arthritis went away after gluten was eliminated from her diet.

Refuah shleima to all!
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amother




Purple
 

Post  Wed, Jul 12 2017, 6:12 am
amother wrote:
Thank you everyone for your replies. They were very helpful.
Purple I may take you up on the offer if I have any questions in the future.

Iyh you will find the correct medicine to get the arthritis under control quickly!
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amother




Maroon
 

Post  Sat, Aug 05 2017, 8:34 pm
OP here. Was just at my daughter's rheumatologist on Friday. She wants her to start taking methotrexate before starting a biologic. Does anyone have any experience with that? Any side effects?
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amother




Scarlet
 

Post  Sat, Aug 05 2017, 11:34 pm
I hear being on plant based diet is healing. refuah shelaima!
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amother




Green
 

Post  Sun, Aug 06 2017, 12:12 am
I was on methotrexate in my early twenties after I was diagnosed. I was able to BH get off it suet a couple of years.
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amother




Blonde
 

Post  Sun, Aug 06 2017, 3:45 am
My child was on NSAIDs, then steroids, then went to biologic, so we skipped methotrexate. I can't give you info on methotrexate, but I was wondering if you knew about the Arthritis Foundation website? They have excellent forums that are pretty active, and there is dedicated forum for JRA so you will get more info and people's experiences. It was pretty helpful for me in terms of info and support in the early days of my child's JRA.
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amother




Peach
 

Post  Sun, Aug 06 2017, 6:45 am
When I was 18 my doctor said I have arthritis in my wrists and feet. Now, a different doctor told me the pain in my wrists is Carpal Tunnel Syndrome.
I deal with it, I try to stay away from pain killers because it's not healthy. Unless I am in real pain then I would take it. Like as I type my wrists are in agony!! Sad
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amother




Coffee
 

Post  Sun, Aug 06 2017, 8:27 am
Call chai lifeline if you need advice, assistance (insurance help too) or to connect with other moms and maybe someone for your daughter to talk to. Hatzlacha!
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