3 year old recently diagnosed

Pegsboard · 21. Mar 2012, 06:23

Hi. My daughter has just been diagnosed with JIA. Frankly it's a relief as we've had the run around for a 18 months. She's had 1 round of steroid injections and is due another in April. She's due to start on methotrexate in the next 2 weeks and I just wanted other people's opinion of the drug. Also we've been advised to give her the chicken pox vaccine but my GP surgery not aware there is one!! Has anyone else had it.
Any info or advise would be appreciated.

dreamdaisy · 21. Mar 2012, 12:15

Hello pegsboard, it's nice to meet you but I am so sorry you have had to find us. Arthritis at 53 is pretty horrid (that' me!) but for a little one? Your poor baby girl, I hope the next round of steroids help.

I can't help too much on the meth front apart to say that I am on it, and it doesn't cause me too much trouble. There are other children on here who take it and I hope that one of their mums spots your post soon and replies. I know it can be an effective treatment but it is not the nicest stuff in the world. I don't know about the vaccine question either - could NHS direct help with that?

Now, how about you? How are you coping with all of this? Do you have a supportive other half? I hope so as this can be a very tough journey. I was very ill as a child and I now know it put my parents' marriage under some strain from time to time. I hope you are not dealing with this alone, I really do. I wish you both well. DD

andylamb · 21. Mar 2012, 14:25

Sorry to hear about your little one. I hope they get it under control really quickly.

There is a chickenpox vaccine and I would definitely go for it before she starts the methotrexate. Once she's on it you can't have any live vaccines. We didn't give my daughter the vaccine and in retrospect I wish we had. Every outbreak of chickenpox at school or any other social group is a nightmare. My daughter caught it and we had to have 3 days in hospital with her on an anti-viral drip and she wasn't well at all.

I know MTX does work for some people; for us it was nothing but trouble. You'll have to have frequently blood tests to check liver and kidney function. Our daughter had liver problems on it, and it never actually controlled the flares. But don't let that put you off it does work in some cases.

Good luck,
Andy

stickywicket · 21. Mar 2012, 14:48

Hello pegsboard and welcome from me too. I can see where you're coming from as far as 'relief' goes. If you have a diagnosis, it can be treated and the sooner the better.

I checked out the chicken pox vaccing on the NHS site. Apparently, it's not given routinely in UK for fear of a shingles epidemic resulting. However, it is available for situations such as yours.

I, too, have taken meth for many years with no bad side effects. It seems to be the starting DMARD of choice, especially for children. I very much hope it works for yours.

Pegsboard · 21. Mar 2012, 15:37

Oh guys thank you so very much for replying it means a lot. I have a wonderful husband and we support each other and my mum is a god send but she has fibromyalgia so can only do so much.

We have 3 other children aged 8,6 and 2 so life is hectic as you can imagine! The oldest 2 are amazing with the "babies" and will help with anything they can, although they do say why is it always me sometimes!!

The 3 year old "patient" is awe inspiring. She never moans or even flinches when having bloods and even general anasthetic didn't faze her!

It was a relief to get a diagnosis as we have been messed about so badly that I have lost faith with some of the medical professionals. BUT we have now got the most amazing team of carers, GP, consultant, specialist nurse and physio that I am confident we are on the right track.

Regarding the c/pox vaccine our GP surgery is on the case and I can only imagine it will make our life a little easier.

However I'm still nervous about the metho, it seems so aggressive and "pie" as we call her is so very tiny. That's another question I have! She hasn't put any weight on in a year and has grown only 1 centimetre. Has anyone else had a similar growth stunt due to JIA?

Well I've rambled on far too much! Sorry.

Thanks again for getting in touch.
Zoe. X

stickywicket · 21. Mar 2012, 15:46

Ramble on all you like, Zoe. Sometimes I find it's only once I get started that I realise how much I kind of need to say something.

I'm so pleased you have a good husband and helpful children and also a good, supportive medical team. That will make things easier all round in what is a far from easy situation.

I'm afraid I can't help with the 'not putting on weight' thing. I hope some other parent will be able too. (I should have pointed out that I'm an old granny, not the parent of a child with arthritis though I have had it myself since I was 15.)

Meth, and other DMARDS, always seem like an aggressive choice even for adults but this is an aggressive disease and needs powerful meds. Your little one will be well-monitored while she's on it.

I hope it works well for her. Please keep in touch. We are here for you, too.

suzygirl · 21. Mar 2012, 16:09

Hi, so sorry to hear about your daughter. Any uncontrolled illness will affect a childs growth and weight gain, unfortunately. Once the meds take effect, she will return to her normal development re weight and growth.

I am pleased you have a good team of docs and good support. Like DD, I find it hard but for a child to be affected is heart breaking. My youngest was very very poorly for years and is now a happy healthy teenager, normal height and weight and very active. They are very resilient.

Take care

Pegsboard · 21. Mar 2012, 17:18

Hi suzygirl

Thanks for that, I think we've been misdiagnosed so many times we can't truly believe that "it's only JIA". We just have to hope the meds do their job and we'll have a 6 foot giant on our hands (er as I'm only 5 ft and dad only 5'4 I doubt it!!!!)

Thanks again
Zoe X

cthornley · 22. Mar 2012, 09:53

RE: Chicken pox vaccine
My DS had it - as I have RA, am on MTX and have never developed an immunity to CP (had it several times

) and we felt that having a small child at nursery/ school is like having a natural CP magnet in the house.

GP had a bit of a flap about it as they had never done it before but in the end they got me a prescription which meant Boots ordered it in specially and i went and picked it up and stored it in my fridge, booked a nurse appointment and she then gave it to him there & then
It was a bit of a faff but touch wood it seems to have been the right thing to do as nursery has had several bad outbreaks of CP that have so far passed us by

only thing was I felt guilty for subjecting him to an extra needle stab but he was fine and got a special treat so he forgave me dead quick.

Good luck
3yo's are a handful at the best of times (mines that size now) but they seem amazingly resiliant where medical treatment is concerned - my son is about to go in for an op next week (not arthritis related) and he actually seems excited (his parents are terrified however :roll: ) because he likes the childrens hospital and of course he'll 'get a new toy mummy'

Chrissie

loren · 29. Mar 2012, 04:39

Sorry to hear about little one,

I was diagnosed at 5 and now I'm 18 I've had many a steroid injection and as for the methotrexate it's the best time for her to have it, I went on it at 5 and it was the best thing ever my parents were scared but I was fine and they said it was the way to stop disformatie. I am not back on methotrexate due to bad flare up but I did get rid of it for about 4 years between 10 and 14 but looking at all options.
I know it's scary but stay strong and beware for the weepy moments from her, she may get used to it but will still feel different

Hope you get on ok. Xxx

3 year old recently diagnosed

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