Juvenile Idiopathic Arthritis

[figandmaple16]

Hi everyone!
I am new to mums net. I created this account as I really would like to some families out there with JIA experience. So here is our story with JIA..
My son is 3.5 y/o and was diagnosed with JIA two days after his 3rd birthday. We took him in to the doctors after we returned from a 3 day get away for his birthday (zoo, play area and all that). During which time he barely opened his eyes! We had been to the doctors a few weeks before about his knee again, as we had been there initially a week or two before about it and we were told that it may have just been an injury and to return if it didn't subside. Which it didn't. So we went again to the doctors a day before we set off, except this time we were there about his eyes. His eye was red and slightly swollen, he had severe photophobia, and we mentioned that we have animals etc and we thought it could be an infection from that. The doc prescribed antibiotic eye drops. We also mentioned again his knee, but again the doc said that it was probably an injury and we should wait longer. Anyway, we were not convinced at all about this docs appt, so we got the eye drops but didn't administer it at all.
Anyway, during our trip he didn't open his eyes pretty much at all, even though we were doing so many exciting things with him, the zoo, the massive play area, train ride etc. Looking back I feel so bad because I thought he was just being a bit dramatic! However, his eyes were extremely photosensitive. The whole time he had to be carried everywhere as he didn't open his eyes, it had been like that since his knee swelling had begun though.
ANYWAY! I'm babbling. A day after we returned (we saw doc on Friday, left sat and back to doc on Tuesday), we took him back to the doc and this lady finally listened!! She referred us to outpatients at the hospital the following day and thats when he was diagnosed, then and there before bloods were back or anything. Turns out he is ANA positive, and RF negative (the latter I am not sure perhaps he is positive). He was also diagnosed with severe asymptomatic uveitis.
So since the 30th July 2019, we have been up to the hospital multiple times a week for opthalmology, rheumatology, three rounds of IV methylprednisolone. He has been on courses of oral pred, steroid eye drops and dialating eye drops daily (stingy as ANYTHING, I had to try it for him to see what he was going through) as well as a few other eye drops. At its worst he was on 4 different eye drops daily with about 3 drops of each at a time! We held off on methotrexate for a while. I guess we were apprehensive, untrusting (a bit silly but it was hard to deal with!), and I suppose it hadn't sank in to us, also we were hoping it was something else other than JIA so we requested additional toxocara and toxoplasmosis tests as we have cats, but they came back negative. We tried gluten free diet, a sort of keto diet (not strict) and nothing really helped. And we understood, and were told by docs multiple times that this type of childhood arthritis isn't helped by diet so much, but since its idiopathic, we needed to try it! They said it wouldn't help but we thought it wouldn't hurt and they can't realistically say it wouldn't help at all since its origin is not known. We understand our margin of error is much greater than docs but we just wanted to avoid this methotrexate.
So again, anyway, he has been on methotrexate for a while now (approaching 12 weeks) and still on oral steroids.
I just wanted to hear, meet and talk with others that have or are going through this with their young one, or if they have experienced it their self.
Thanks! and sorry about this paragraph!!

[ItStartedWithAKiss241]

Hello, I’m sorry for what your family is going through.
I have a daughter with juvenile arthritis and when it was active it took over my entire life! She has been in remission for about 5 years now! A few scares during this time but we could keep on top of it.
My daughter was also about 3 when I realised there was a problem. She had arthritis in both wrists, knees and ankles. She had a rash all over her limbs and face. She couldn’t walk and could barely stand, she was passing out from pain I assume.
We did try a diet plan which I feel helped ALOT. My daughter did not eat tomatoes, black currant, spinach, pineapple or potatoes! Once she was in remission we slowly introduced these food back into her diet.
I’m not an expert but the 2 years my daughter was suffering for, I will never forget. I also had a son a year older than her and was pregnant again, and suffering from morning sickness all day! This was awful whilst we stayed in hospital for 4 months at one time!
Feel free to ask me any questions.

[figandmaple16]

@itstartedwithakiss241
Hi! Thanks for your reply!! Did your daughter have polyarticular subtype? What kind of diet did you go for? Was it just those listed and why? did you do an elimination diet? I feel like my sons bowel problems can be part of JIA but doctors dismiss it!
Sorry for the bombardment of questions, especially the personal ones! but you DID say feel free :D But I wonder, did your daughter take methotrexate? Did it work or did she go from one thing to the next until something worked? My son is on a lowering dose of steroids and the ophthalmologist feels that his eyes will flare again, to be honest we do too as it has happened everytime they have taken him off it. However, now the methotrexate could be built up in his system, we are anxiously waiting to see if he is responding to it, otherwise they will put him on a biologic drug along with methotrexate, which is daunting since that will be two injections a week!

Thank you SO much, honestly, all this time, I haven't reached out. Only now am I really letting it sink in as before I feel like I was on autopilot. We've had on average 3 hospital appointments since he was diagnosed, a small operation (on the knee where fluid was drained and steroid was injected), hospital appt in Edinburgh, as well as the doctor check ups and hospital visits when he got ill, which has been a lot with all the steroids and now, methotrexate.

[ItStartedWithAKiss241]

Hello, yes my daughter has polyarticular arthritis! It seemed to affect her everywhere!
The reason we cut out only those 5 foods was on the advice of a private dietitian. Those foods are known to cause inflammation.
I felt to cut out gluten-and processed foods aswell would be to unrealistic to stick to long term.
My daughter often wouldn’t eat for weeks at a time and I think it was because other organs (spleen etc) were swollen and so squashing her stomach?
Possibly your sons bowel is inflamed?
My daughter was very lucky in that the week we went to a different hospital to talk about starting methotrexate, was also the week she naturally started to go into remission and was able to stand and walk again! She stayed on some strong anti-inflammatories several times a day for a couple of years and then I weaned her off when the fear had lessened. Luckily for us my daughters eyes were not affected, I’m so sorry to hear this is happening to your son.
She did go from one thing to another until something worked and we stayed as inpatients for 4 months while we figured it out.
It does take over your life and I cannot explain to anyone who does not have a sick child how daunting it is. I spend every waking hour looking into medication/diets/ downstairs living/choosing wheelchairs (I used a stroller most of the time as it had rainwear but a wheelchair in the house/when she was well enough to go back to nursery).
I can understand why 2 injections a week seems a lot. Is your son tolerant of the injections or is it an ordeal for him?

[figandmaple16]

We done the same thing with diet but I didn't know tomatoes caused inflammation! We have also added more turmeric, garlic and things with anti-inflammatory properties to the diet too.. I think it is inflamed, which is why I have been thinking it could be JIA related? But I am not really sure, the Drs don't seem to think so!
The uveitis is the worst! and thankfully your daughter never had this as, at its worst, he couldn't do anything! As I said his diagnosis was a day or two after his third birthday. When we brought his cake he couldn't even look at it with one candle in it and opened all of his presents in the dark! It truly was so sad to see, and he gets very photophobic overtime he has a flare. He had been on IV and oral steroids and usually towards the end of the weaning course he flares up again. We are waiting to see how his eyes are once this one completely finishes next week as it will indicate whether or not the methotrexate is working for him.
Im so glad to hear your daughter is better now, has all her aches gone completely? JIA is such a strange condition, did you have any thoughts about what could have brought it on? Personally for us, we felt so much guilt and blamed ourselves, the fact that there are no conclusive answers as to how and why it develops made it especially hard! I still want to get to the bottom of the disease.
It really does take over, and the internet really doesn't help when it comes to medication!! As far as I have read, research doesn't fully understand how methotrexate works so it was very hard to accept everything when its so shrouded in uncertainty.
He is beginning to take it a bit better, he calls it 'the chooka thing' and he gets very upset about it, even putting ice on the site before the injection really upsets him.. we have to hold him still for it. And don't get me started about the monthly bloods!!
He has gone through so much as I have definitely seen a change in him, more than what you would expect as normal character growth and behavioural changes at his age. Do you think your daughter has matured a lot through it? I think kids that go through all these kind of things end up much maturer than their peers.
Again, thank you for your replies, it really helps to be able to speak to someone who knows and has experience about this. I have been trying to find JIA specific groups in my area but it seems they are hard to come by! Did you seek out/ find anything like this?

[ItStartedWithAKiss241]

Hello sorry I have taken so long to reply. My daughter also hated the bloods and although we are a normal well spoken family she would scream “I hate you!” Etc at the Drs and nurses while we held her down. It was horrible.
She does still get aches, she can’t carry stuff for too long, jump on trampolines etc for too long, walk very long walks, but generally you wouldn’t know at all.
I did find my daughter matured very fast! She had to take some responsibility for her own health at a very young age and I think that’s not a normal situation.
I have read a lot on Uveitis (spelling?) as it’s a known link with JIA isn’t it. I cannot imagine how awful it must be until you experience it in your own baby tho x
Sending love x