Hi my daughter has recently been diagnosed with Juvenile idiopathic arthritis she’s 19months old in the time frame of 7wks she has it in both knees, ankles one albow and possibly in her eyes, has anyone had this that’s able to help with information and how recovery has been?, we are new to this and have so many questions.
Many thanks!
Sorry to hear about your daughter, especially as she’s so young. My daughter was diagnosed 18 months ago when she was 11. I have had RA (the adult version) for about 12 years so I have a reasonable understanding of what’s going on.
Unfortunately recovery is probably the wrong word to use with JIA it’s more a case of managing it, easing symptoms and more importantly preventing joint damage. It is a long term condition, possibly for life although thankfully a lot of children do grow out of it.
If you’ve not already seen it take a look at this website. There is a lot of very useful information about what JIA is, how it is treated and practical suggestions for living with. jia.org.uk
I really hope the rheumatology team can get your daughters JIA under control quickly, although there is often a lot of trial and error involved so please don’t get disheartened if the first treatment doesn’t work. There will be something that will.
Hello. Sorry to hear about your daughter. I appreciate how upsetting this is. Both of our daughters were diagnosed with JIA when they were 18 months old. They are now 14 and 10 years old. One of them also has uveitis or complications with her eyes.
I share the sentiments of the previous response.
Every case is different. With both of my girls it took time to find the right dosage and combination of medication to control the condition. Unfortunately, for many people, this is a chronic condition.
The good news is that treatments and modern medicines are much much better than they used to be. Unless you live in Wales, there are regional paediatric rheumatology departments with specialist medical consultants, nurses and physios. Both of my girls have had long periods of the condition being well managed through medication and periods of remission with no symptoms.
My advice as a parentwould be:
1) If you have not already done so make sure you are referred to a paediatric rheumatology department.
2) Ask the consultants any questions you want when you are in clinics.
3) Trust your doctor. Paediatric Rheumatology Consultants have years of training and experience. The management of every child is different and the research is constantly being updated.
4) Use your specialist nurse. They are a mine of information and are there to support you. The medics are very busy and at times you won’t be able to get hold of them because they are in clinic, but the nurses will always speak to the consultant for you or answer your questions directly.
(If you live in Wales, come back to me the situation is slightly different.)
There are some specialist voluntary sector services. We use CCAA who run family weekends which are great for answering lots of questions and JIA matters who are developing a range of family networks. There are others.
Both my girls lead very active lives. Both swim for the county squad. Both dance. One plays netball and the other plays cricket and golf. My oldest told me the other day that even if she could get rid of the condition she wouldn’t. ‘It’s pat of who I am and what makes be so wonderful’
I hope this helps in some small way.
Hi there
So sorry to hear about your daughter. My granddaughter showed signs of JIA just before she was 2 years old. She had pain in her knees and it would take about 2 hours before she could walk, this happened every morning. After a couple of trips to the doctor they referred her to a Paediatrician and many tests later she was diagnosed with JIA.
The type if JIA she has is Oglioarticular, I'm not 100% sure if that's how you spell it, and Uveitis so it's mainly in her eyes. We have been very fortunate that it's been caught early otherwise she could have gone blind. There is a 9 year old girl that has a dedicated website 'Olivia's Vision' and unfortunately it took a long time for her to be diagnosed so she's now blind in one eye.
I think it's a very good thing that your daughter has been diagnosed very young but I know it doesn't make it any easier, I really do feel for you.
My daughter and son-in-law were at a loss as they didn't know what to do but found the JIA website and Facebook groups really helpful. We went to a local group meeting recently which is also helpful, maybe search on line and see if there's one near you.
Our granddaughter is now on Methotrexate, Humira, Ondanceatron (not sure if that's how you spell it) and Folic Acid. Fortunately our granddaughter has stopped the Ondanceatron (anti sickness) as the Methotrexate and Humira don't seem to give her side effects.
I am pleased to say that our granddaughter is now in medicated remission.
I really hope that your daughter's medication is keeping the pain at bay.
People on this forum are amazing sndcreally helpful and I've no doubt will be able to answer any of your concerns.
Take care xx
Check out Katy hoogendam who is now 28 but was diagnosed at 10 months old. She's lived a horrible life on every drug and lots of operations until 2 yrs ago.
Then found the paddison program and bikram yoga and is now living life to the full including representing oregon in the USA yoga championships.
Hi, I was diagnosed at 6 with JIA and I'm now 26! You'll have periods in her life where its settled and other periods where it's very active and she may need medication just to function. But I can tell you it's never stopped me from doing anything! When my medication is right theres nothing I can't do. Ofc everyone is different and she may grow out of it (there is some statistics to show this). From when I was diagnosed to now rheumatology has come leaps and bounds! Also because shes so young it'll be her normal and she'll know how far to push herself. I can tell you she'll be frustrated when she's having a flare up and has to sit out of PE and it's awful and painful. But know no flare up last forever and the pain will go. Stress has always been a big trigger for me so just keep an extra eye on her when shes older around exam times. Message me if you have any questions, hopefully I can help!
JIA-er Katy Shares Her Progress: From 10 Months Old to 26 Years Old
