Date: 22.01.2007
From: Lisa
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Subject: CAN ANYONE HELP?......my daughter is only 3
and in september 06 she was diagnosed with Juvenille idiopathic athritis. It started in one joint (L knee) but now the pain is much worse, mostly in both of her knees/legs (including toes) and her neck.... but sometimes all over - including her arms, fingers, spine etc too 3 weeks before xmas i took her back to the pead that diagnosed her, informed him that the pain was no longer in just the L knee and he basically told me that the new pains were just growing pains and made me feel like i was over-reacting (for the record, he was running late, kept looking at his watch and phoned his wife mid consultation!!!) He came to this conclusion because there was no more swelling....she had been on the highest dose of the anti-inflamitory medicine naproxin by then so surely THERE WOULDNT BE ANY SWELLING?? I KNOW that he is the doctor here BUT i also know my little girl-she never makes a fuss - she doesnt ever complain even when she is in pain - i spend 24/7 with her - i am 99% sure that this is much more than growing pains !!!!!!! I am not the sort of mother that overreacts and believe me..... i wish it was anything other than athritis. The reason i am writing this and asking for help is because last night was awful..... i have never seen her in so much pain and she is VERY tough normally. She didnt know where to put her legs in bed, couldnt hold her head up :O( and there was NOTHING i could do I cant just leave it ... she needs stronger medication and a second opinion but where do i go ????? Thank you for taking the time to read this xxxx
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Date: 25.01.2007
From: Haylo
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Subject: Re: CAN ANYONE HELP?......my daughter is only 3
Hi Lisa This is sad for you to deal with I know.Consultants can be so insensitive, its only cos they deal with this stuff day in day out that it becomes routine for them. This is no consolation, I know. Basically I was diagnosed with 'stills disease' as they called it when I was 2 yrs old. Its mostly known now as juvenile rheumatoid arthritis. I cant remember much as I am 27 now! HOWEVER, your little girl is in much better hands now in 2007 than in 1981. Thats not too say that I wasnt, it just took them ages to diagnose it as it was hardly recognised then that children could have arthritis. I was in the end referred to a specialist hosp. in london (im midlands)where they could give it a name. They pretty much got it under control with steroid injections to dampen the swollen knees and then I was taken Naproxen also (times havent changed too much then!)and had problems with my eyes called iritis for which I had eye drpos. I was then ok from about age 7, I was doing P.E at school etc, although i still had to wear a splint to bed on my leg. Then I started high school and had a flare-up (due to hormones apparently)then it was steroid injections and naproxen again. That was for 2 or 3 yrs then at 15yrs I was released from the out patient care london with the all clear. They said that cos Id had it when I was young, I was prob more UNLIKELY to get it in middle age. What did they know??? I got diagnosed with Rheumatoid arthritis shortly b4 my 20th birthday!! Thats not too say that your daughter will follow same path--I know a girl who had same as me when she was a kid and shes fine now--completely clear, and has 2 kids. Howver, Im not too bad at all, certainly not 'crippled up' or anything. I kinda follow the same sort of path now, Ill be fine for a couple of years and then have real problems, legs drained etc. I always take tablets, and you can get some really good treatment nowadays. When i was on the most effective tablets i went running!Although i had to stop these tabs due to side effects...anyways, what im tryin to say is that dont think it will be doom and gloom, honestly, if you were to meet me now youd think theres nothing wrong with me. I spose this leads me onto your current problem, cos for me I find it very frustrating sometimes as I look so 'normal' and young, people dont think Im in any pain. As I said, I do get swelling in my knees and thats all the dr.'s seem to care about. Once they're drained they think its all ok as im not showing any physical signs. I think this is how it is with your daughter. I have loads of pain with my arms, shoulders and wrists and all the muscles/tendons connecting them. This is where the disease is attacking the soft tissue. You dont get the synovial lining filling with inflammation as its the muscles and there isnt joint lining here. Basically, theres nothing here the dr's can do, other than pain killers, and to be honest, I think that cos theres no danger of joint damage here, they dont really care. That sounds awful, but I hope it makes sense, this soft tissue pain is not joing damage and erosion and so not the docs priority, and if it is the joints but no inflammation cos of the anti inflammatories, then there is still pain but again no erosion as its inflammation that causes the erosion. They prob dont want to give your daughter anything stronger as the adult drugs do have serious side effect. Naproxen is quite good and actually Iv just been put back on it along side my disease modifying drugs and it does seem to combatting the swelling. I do wish you and your daughter all the luck in the world, she is on the right stuff, the rheumatologists know their field, they are just insentive idiots who never explain anything as they think we are too stupid to understand!!!
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Date: 07.03.2007
From: Lisa
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Subject: Re: CAN ANYONE HELP?......my daughter is only 3
Hi guys xxxx I have an update, but first... thank you for your replies - it really feels great to be able to share this with people & get such sound advice xxxx Right..... a few weeks ago my little girl started to feel unwell, she got worse & worse which resulted in me calling NHS direct, that, in turn resulted in them sending an Ambulance (with 2 VERY dishy paramedics i might add ;) anyway.... turned out that she had pneumonia & a partially collapsed lung!!! THIS IS THE BEST THING THAT COULD HAVE HAPPENED TO HER !!!!!!!! Ok... now you are wondering what sort of mother comes out with a statement like that!!! Bear with me, read on and you will see xxxx Jazmyn was VERY poorly (even my little fighter couldn't fight this one :-( ) She was put on an antibiotic drip, a fluid drip, a monitor, oxygen, had a bad cough and kept having bouts where she stopped breathing!! It was hideous & i didn't sleep for 3 days.. spent the whole time watching her breathe!! After about 24 hours the paediatrician came & dropped a clanger.... the Naproxen had started to damage her kidneys !!!!!!!! so they stopped it instantly - explains my "thank goodness she got pneumonia" comment xx as the original paediatrician has not asked to see Jazmyn for a follow up since he prescribed the naproxen HOW THE HELL ELSE WOULD I HAVE KNOWN IT WAS DOING THAT TO HER KIDNEYS ???? On day 3 she was at her very worst. As well as all the pneumonia, lung, breathing stuff to deal with... she now had severe arthritis pain all over (had to lift her to the toilet, screaming in pain :( ) thrush in her mouth & down below from all antibiotics she was on, a urine infection as she had stopped drinking about a week before she went into hospital, was loosing weight rapidly as she hadn't eaten for about 10 days by then (wasn't much of her to begin with), her eczema had flared up so she had skin drier than a cactus in the dessert ;O) AND the cannula for her drip clogged & had to be redone (this happened twice more during her stay) - oh & just to add insult to injury..... day 3 was her 4th birthday !!! Anyway...... she was in hospital for over a week. After day 3 she got steadily better & the minute she ate something..... they sent her home!! I was worried as she still had the pneumonia but it is standard practice to send kids home once they eat as they need the beds i guess. I kept a VERY close eye on her, kept giving antibiotics & thrush medicine for a week & gradually built her strength back up....i was amazed by how weak she had become & how much weight she lost - several people commented on how "drawn" she looked. I do however end on a very good note. Arthritis aside, Jazmyn is virtually back to her old self xxxx I spoke to the doctors about my issues with her arthritis & after seeing how much pain she was in when taken off the naproxin, they agreed with me that it is much more than "growing pains" - Jazmyn has now been referred to a paediatric rheumatologist at Great Ormond Street Hospital :O) Obviously, i wish we didn't have to go at all but, we do & i am over the moon that she will be receiving the best possible care at one of the greatest hospitals in the country xxx The last few weeks have been among the hardest of my life BUT i truly believe that everything happens for a reason & out of bad came good xx Take care all xx Lisa xxxx
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