Tina

Age at interview: 38

Brief Outline: Tina is Lucy's mum. Lucy has systemic juvenile idiopathic arthritis. Tina did not give Lucy her medication when she was first diagnosed because she was afraid of the reported side effects. Lucy became very poorly one winter and had fluid around the heart. After life-saving surgery Tina let Lucy take the medication. The medication has been very effective.

Background: Tina owns a hair salon. She is married and has five children (aged 2, 4, 5, 8 and 10). Lucy is her oldest child and was 10 at the time of the interview. Lucy is white Irish.

More about me...

Tina is Lucy’s mum. Lucy was 10 years old at the time of the interview. She was originally diagnosed with polyarticular arthritis in 2009 but doctors later changed the diagnosis to systemic arthritis in 2010. 

 

Tina remembers Lucy having problems with pain in her neck six months before she was diagnosed. Tina had to drive slowly when Lucy was in the car because sudden movements hurt Lucy’s neck. At first the doctors thought Lucy’s complaints about her painful neck were out of habit. They prescribed ibuprofen and said that Lucy will probably forget about her neck. Lucy’s pain lasted for several more months and her knee became swollen. The hospital x-rayed Lucy’s knee but found no abnormality. Two weeks later the swelling spread to her feet and hands. The doctor ordered blood tests and diagnosed Lucy with polyarticular arthritis. 

 

Tina suspected that Lucy had arthritis after speaking to other people with the condition. Some of Lucy’s symptoms were consistent with the symptoms of other people she knew. The diagnosis was not a complete surprise but it was still an emotionally difficult time for both Tina and Lucy. At first Tina was worried that Lucy would end up with the swollen and stiff joints of an elderly lady. She was also worried about the side effects of the methotrexate medication, which included hair loss and kidney damage. Tina was not given any information about the methotrexate and. Lucy’s rheumatologist was initially uncertain whether or not the methotrexate would work for Lucy’s type of arthritis. This made Tina feel less confident in the medication and she decided not to give Lucy the medication at this time. Tina feared it would do more harm than good.

 

In December 2010 new symptoms began to surface. Lucy was having blood circulation problems and she “looked like a corpse”. Tina said that Lucy looked like she was about to die. She also had a very high temperature in the middle of the winter and was sleeping with the fan on and on top of her sheets. She struggled to drink, eat and sleep and her neck was very painful. Tina took Lucy to hospital and after chest x-rays doctors discovered that she had three centimeters of fluid around her heart (pericarditis). Lucy had the fluid drained from her heart and had a blood transfusion. She was then diagnosed as having systemic arthritis.

 

When Lucy left the hospital she started to have regular blood tests, methotrexate tablets for her joints, anakinra injections for her heart, and folic acid to protect her stomach from the medications. This combination helps control Lucy’s arthritis and Lucy said in her interview that she rarely suffers from pain and swelling anymore. Tina wishes that she was properly informed about the methotrexate when doctors first prescribed it. She would have probably given it to her at the beginning.

 

Lucy had a needle phobia and did not want to have any injections or have any blood taken. Tina took Lucy to see a psychologist to help overcome the phobia. Lucy has chosen to inject herself in the mornings rather than let her Tina do it for her.  

 

Tina says she was in denial about Lucy, having JIA; she didn't want her daughter to be ill. At first she felt cross about arthritis but also relieved it was not anything worse.

I was in so much denial about her actually having arthritis because I didn't want her to be , I didn't want there to be anything wrong with her, you know….

 

Yeah absolutely.

 

They took samples of the fluid that came off her heart and they were testing it for all kinds of things so I still had it in my mind that it was nothing to do with her arthritis because I didn't want it to be her arthritis because I wanted it to be just gone, I wanted it, I want her to be one of the people who grew out of it and... But so whenever I found out that the, that it was because of her having systemic arthritis, I don't know how, I just, I wasn't relieved because I was still cross she had it. I was hoping it was going to go away but then I suppose now I realise maybe we're lucky that it was all she had because maybe if they hadn't have, if it hadn't have been the systemic arthritis it could have been something a hell of a lot worse.

 

But now, you know, I'm not scared of it anymore, I'm not worried so much about her even; I'm not, I'm just, I'm not relieved, I'm happy she's on the right medication for her arthritis whether it's systemic or you know, I don't think you could ask which is worse, is it the joints being sore or the fact that the fluid goes round her heart because every bit of it's equally as bad, you know.

 

Tina’s daughter, Lucy, got worse after diagnosis. Her condition declined “overnight”. At the time...

Have things changed then over time?

 

Well I'd say whenever they diagnosed it she probably got worse. It was if she just got worse overnight and she was very stiff and she was very sore and; but she was just being, you know, taking anti-inflammatories for it and she was, you know, it was kind of controlling the pain alright but she was still in pain all the time and it wasn't just one joint, it was probably every joint. It would have been her every single joint but mainly her neck.

 

And her wee hands would have swollen up and I'd be up at night rubbing cream into her feet and even though I suppose I thought maybe she wasn't too bad, she was, it was horrendous and she shouldn't have to suffer like that. You know and probably if I had of realised at the time I would have had her on more, you know, more serious medication at the start so she would have been normal for her age rather than burying my head in the sand and thinking that she's alright, she only needs some Ibuprofen whereas she does, needed more than that.

 

So you were rubbing the cream on her neck and things after the diagnosis?

 

Yes well I would have been rubbing her joints and that before. You know whenever they were sore I would have been doing stuff with them, massaging and that.

 

Tina talks to other parents who have children with arthritis. It’s good to have somebody who is...

What is it specifically that's good about speaking to other parents?

 

Well I just have them, there's two people that…there's a young lad close by and I talk to his mum and there's another wee girl, not too far away either, she's eighteen nearly and it's good even to talk to her and her mum, you know, as well and just if anything happens it's nice to know you can talk to them. And just to…it's been nice though going to some of the support meetings as well, you know, the, we went there at Christmas time, we went to, there was a meal and a pantomime and it was nice talking to the kids there, the mums and dads too you know and it was good for Lucy to be able to talk to, to the wee ones around her age as well because when you go to the rheumatology department for your check-ups you're sort of in behind a curtain and you're not, you don't see anybody else till you leave, you know, you just go in and you hide behind a curtain for a while and then you leave again. Which is OK because, but you don't meet them so you don’t. But it is important to talk to parents that you know, to talk to, from a parent’s point of view you wouldn't get talking to parents either at any of your appointments you know. But that's it really.

 

Tina feels parents should be educated more about arthritis in young people. She felt that parents...

Well it's still going to be tough and I do think that a nurse or somebody very sympathetic would help you know, would definitely think somebody spending a bit of time with you even, you know, because it's very hard. The child will accept it much quicker than the parent because they just don't want to know, they just want to be the same as their friends and they'll just want to really take whatever it is that the doctor says they have to take and then they'll be better. So I don't even think the child, if it's a young child, needs to maybe be told all that much. I think the parents need to be educated on it so they do and I think it would; I think it just takes time, just the rheumatology department here is very good. It's taken me a while to realise that. They're very, very, very busy, they've not much time to you know, to talk to you really because they're so busy. There's a couple of really fantastic nurses up there that couldn't do enough for you and…but I suppose they don't have time to sit down and talk to you about it, you know.

Don’t be afraid when doctors put your child on strong medication. They are designed to help and...

Is there anything that you wished you knew earlier?

 

I wished I hadn't known that, I just wish I hadn't been so afraid of the medication because I would have her on it, I wouldn't have been carrying her up and down stairs and she wouldn't have to go through all the stuff she had to go through. I was really afraid of her having to have her joints injected and her joints haven't of have to be injected. I know a lot of kids have to have that done but I suppose her systemic is maybe stronger than the joints, you know, involvement but I'm just, I wish I'd just hadn't of been afraid of the drugs and that's the only message is don’t be afraid of the doctors putting your child on a strong drug because they're actually trying to help you. I sort of had the feeling that they were all up against me, that they were trying to put her on stuff that was going to damage her in another way, you know, so.