I'm new to the JIA forum but have been a member of Health Unlocked for quite a long time now.
Our gorgeous little granddaughter who will be 3 this Saturday, 9 February, was diagnosed last year with JIA (Juvenile Idiopathic Arthritis) and the type she has is Uveitis so she has inflammation in her eyes. In her left eye her vision is particularly affected and her lens was stuck to the surrounding tissue. She has been on steroid eye drops and has to have regular eye tests until she's a teenager.
We were hoping that the eye drops would be enough but unfortunately they are not and she was put on Methotrexate about 7 weeks ago; she has to forgo the medication tomorrow as she has been spiking a temperature.
Her mummy and daddy originally noticed her limping so my daughter took her to the doctors, she was then referred after going back as it hadn't cleared up to a Paediatrician. The Paediatrician was convinced it was JIA but the knee seemed to clear up but then her thumb started hurting. It was in May last year that the hospital called and said they thought it was JIA.
After many Xrays/Ultrasound and blood tests she was finally diagnosed in around October time with the Uveitis, we were told that if she didn't have the drops then she would go blind.
My daughter and her husband were really worried last night as they didn't know what to do; her temperature was spiking at 40, fortunately it did come down with Calpol. My daughter managed to get hold of the nurse that has been looking after my granddaughter and advised not to take her out today and not to give her the Methotrexate tomorrow night so that was a relief.
My question here is do any of you have children/grandchildren that have this form of JIA? If so, how do you deal with it?
Hi , My daughter has a different type of JIA , but I wanted to say "Hi" and let you know of a charity set up by a JIA Mum from the UK .It's called Olivia's Vision and has lots of information and advice on it. oliviasvision.org/ I came across it shortly after my d was diagnosed. (she was ANA positive in her bloods which indicated she was also at risk of uveitis even though not the usual sub type of JIA. I hope some other members reply soon. I also belong to some very helpful and active Facebook support groups for parents/caregivers of children with JIA I'm not sure if I'm allowed to share that info on here. but let me know if interested. Take care and best wishes to you and you family Xx
Hi Anitacarol , thank you so much for your reply, I really appreciate it.
We were worried this week as our little 3 year old was spiking temperatures, fortunately our daughter managed to get hold of her JIA nurse and had to stop this week's dose of Methotrexate.
Thank you very much for the link, I'm definitely going to have a look at that. My daughter is a member of a Facebook group but I needed something as well as I want to help as and where I can.
Sorry to hear your worrying story. Both our daughters have JIA and one of them has uveitis. I must admit there have been times that we have found it difficult to keep the uveitis under control. My daughter is on methotrexate all the time and we add in the steroid eye drops as and when required.
from what you say that you are receiving the appropriate support. It would be inappropriate to offer any specific advice. Each case is different and the medical team are the people you have to work with.
As a parent some things I might be asking would involve:
Are you under the case of a paediatric rheumatologist. You want someone who specialises in children and rheumatology.
Build a good relationship with the specialist nurse. They are an invaluable source of information and are generally on hand with advice. They will be able to advise whether or not you want to miss one dose of methotrexate whilst the temperature is spiking.
Regular eye tests. When our daughter is not flaring with uveitis she has 3 monthly eye tests. When she is flaring it is more often, sometimes 6 weekly.
From your message it sounds like these are all in place which is good
I would also Suggest finding a local support group. There are a number out there though many are regional or national. It is good to know that you are not alone and to be able to talk to other parents experiencing the same issues. Also your grand daughter may appreciate meeting other children with the same condition at some point in her life.
Personally we use CCAA ( children’s chronic arthritis association) who run family weekends and JIA matters who run local support groups and have a good internet presence. These are both JIA specific. The National Arthritis charities also increasingly have JIA projects which we have found very useful but I am not upto speed with what they are doing at the moment. They can be found quite easily on the Internet. I am sure someone else may be able to tell you. Where about sin the country is your grand daughter based?
Hi there Daniel-Madge , I really appreciate your response and I'm so sorry both your daughters have this awful condition. I'm on my mobile at the mo so will respond properly during Thursday.
I'm so sorry that both your daughters have JIA, what a worry for you both, it's hard enough with one but with two. Problem is with this if it isn't treated you can go blind.
Our daughter is getting the support from the JIA Nurse but the problem we find is that if she's worried about a temperature or anything else there is no leaflet or anything she can refer to, she hasn't been given much by the hospital. On saying that though she is able to phone the JIA Nurse.
Yes our granddaughter is under a JIA Nurse and she has built a good relationship with her but of course she's not going to be at the hospital 24/7. I do have a friend who has a daughter with JIA and I'm going to meet him soon. From what you are saying it looks like not so many eye tests will be needed when things settle down a little.
Our daughter is a member of a Facebook support group but unfortunately we don't have a local one where she can meet people which is such a shame. I think it might be worth mentioning this to the hospital as they will have all the names of those children with the condition. Unfortunately though they are the only ones that could do this because of data protection.
I'll have a look at the CCAA, thank you for that. That sounds really good. We are based in Devon.
My daughter got diagnosed at 3 years of age. It began with limping and pain in the knee but blood exams (Reuma-factor negative, but ANA Positive, 1:5120 Titer) was highly indicative of raised risk for uveitis. We started on cortisone eye-drops (Inflanefran) immediately and, after 1.5 years, it is now clear. As other joints got involved (12 in total) she was diagnosed with polyarticular JIA and started with steroid pulses every 6 weeks. Soon after we began with methotrexate and, since 6 months later the mandibular joint had not cleared up, we chose to supplement with Humira. Her inflammation is still not quite stable but she is not in pain.
Please keep in mind that research seems to suggest that, the most important factor for good quality of life later on, is aggressiveness of early treatment. ("Factors predicting response to treatment in rheumatoid arthritis - the importance of disease duration", "DMARD use in early rheumatoid arthritis. Lessons from observations in patients with established disease", ...)
So sorry to take so long to reply to you, I've had a very busy few days with grandchildren/
Oh my goodness my heart goes out to your daughter, you and your family, it's hard seeing children poorly at the best of times but to see them with arthritis at such a young age is very difficult. Our granddaughter is just about to start Humira, my daughter is waiting for a call from the District Nurse who will be administering it. I'm sorry that your daughter's inflammation isn't stable yet but so pleased she's not in any pain.
I will bear that in mind and thank you. My granddaughter is on Methotrexate, the anti-sickness drug (I cannot remember the name of that one) and Folic Acid at present and due to commence Humira in the next couple of weeks. The inflammation has gone down in her eyes which the medics were pleased about as were we. My daughter has another appointment in Bristol in September to see the specialists (she saw them last week).
I am so very glad this was caught early as it's hard to imagine your child/grandchild going blind.
I would also like you, your daughter and your family all the very best for the future.
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