Is Anyone else stressed??

pixie38

Hi.. My 7 year old daughter was diagnosed with poly JIA in Aug and its all been very full on! She's had infusions twice and is now on Methotrexate inj weekly, folic acid, tummy settler and is just coming to the end of a 10 wk course of steroids! Her joints are still not fully under control, and there is talk of her going into Great Ormond Street for steroid injections! My daughter has become very needle phobic and kicks off every week with her inj which takes me about 3hrs to do now and she kicks off with blood tests! I'm finding this very stressful myself and I'm worried sick! I have been told that I'm not alone and that my daughter is not the only child who behaves like this! Can anyone tell me how my daughter can overcome these fears and what I can do to help her and myself! I just wanna cry! I'm a single mum so haven't got the support of a partner, and although I have great support from family and friends, none of them really know how I'm feeling! Can anyone help me, please? x x

Lozzy

Hiya, i understand how you feel, My daughter only started having symptoms 8/9 weeks ago but in that time we have had a diagnosis, an appointment with the consultant and last week she had a steroid injection in her leg last week. I dont feel like iv had time to take anything in so my head is like mush.

Can you see your GP about getting her some counselling? I think they would do it through stories and play at her age, it might help realise some of her fears around the needles.

If they do give her a steroid injection they will most likely give her a general anaesthetic so she wont be aware of the needle.

pixie38

Hi Lozzy.. Thank you so much for your reply.. I think I will have to speak to my GP about it as its getting silly now, and I really dont want her to become traumatised over it!

She is going to have the joint injections under general anaesthetic, we're just waiting for a date! How was your daughter after her injections? Did they make a great improvement?

Wow, U've had alot of treatment very quickly, which is great for you and your daughter.. How old is she and has she got alot of joints affected?

Thank you so much for your reply.. Its really nice to know that we're not the only ones going through this!

Hope to speak again soon

Lozzy

Hiya,
Niamh is two next month, its only her left knee affected at the moment (fingers crossed its the only joint affected). Im not too sure how well its worked. She's got her leg in plaster at the moment to help stretch her ligaments out, she gets that off on Friday so should be able to see then how well its worked but she hasn't complained of it hurting in days so it looks like its had some affect.

pixie38

Oh Bless her.. How's Niamh now she's had the plaster taken off? I really hope it's worked for you!

Mia now has her date.. Shes going into GOSH on 8th Nov.. They're going to be injecting her fingers and ankles and ive been told that they will see on the day if any other joints need injecting whilst they're doing it! This weekend shes been complaining of pain in her elbows and hips.. And the last few weeks shes had alot of pain in her Jaw which worries me sick!!

I hope you and Niamh are both ok! Speak soon! xxx

dreamdaisy

Hi, I'm not a parent but I often look in on here because I truly feel for you mums and dads having to cope with this. I'm considerably older than Mia and do my own injections: Ok it ain't fun but I can totally get where she's coming from. A tip I read on here a while ago is to rub the area to be jabbed with an ice cube as the cold numbs the skin. A little treat or reward after (in decreasing scale of treat, ie the more fuss the smaller the prize) could also work. (Bribery has its uses.) Poor Mia but also poor you, it must be far from easy to be Mum and a nurse. I wish you both well. DD

pixie38

Hi.. Thank you for that comment! Im guessing you have arthritis too if you have to give your own injs! How long have you had them for and do they really help?

I have used several types of bribery but no matter how big or small the reward, Mia really doesnt care and she just doesnt want the inj!!

We went to out local hosp for the inj on thurs and they have given her a reward book now with 'Rules'. One of the rules is that the inj will be given within 30 mins of us being at the hosp, so hopefully we wont have anymore 3 hr jobbies!!

Mia seemed quite happy with this book and she chose to do a puzzle whilst the inj was being done, and she didnt create at all!

Previous to being up the hosp, that morn we had also been to the docs for a flu jab! Mia kicked off bigtime and the poor nurse got kicked! I was so embarrassed and stressed that I made Mia go with her own money and buy the nurse a box of chocs and a card to say sorry! Im hoping that mite have an effect on her too!

Our local hosp have said that they will give the flu jab nx thurs when we go, so shes got a double wammy!! Watch this space!! LOL!!!

Thanks again for your comment.. Lovely to hear from you x x x

dreamdaisy

I've a long and boring medical history of having treatments and injections and realised at a fairly young age that making a fuss only delayed the inevitable so I decided (and still work on the principle) that it's best to get it over and done with. I had to go the hospital weekly for a couple of years to have my meth done, then they saw the light and decided I could be trusted to do my own - it's two years now since I began. Cripes, four years of meth, I hadn't realised! I've been doing my humira injections for three years now - they are working OK on subduing my psoriatic arthritis. My arthritis began in 1997 and went unrecognised for five years and untreated for seven so I think it's too little too late for the meds to acheive too much in the way of benefit. I also have OA in my knees and ankles - that is a whole different ball game.

There was a nurse who used to do my meth injections who had RA herself. She would cheerfully stab us patients but she confessed it took her about two hours to psych herself up to do her own injections. DD

PS I am 53, I began the arthritis aged 37.

Lozzy

She was walking funny on the friday but has been walking fine since, its worked wonders. Fingers crossed it lasts for a while.

dibdab

Hi there,
Like DD I don't have a child with arthritis, though I have RA myself.
Just a thought - our son is a paediatrician at Birmingham Children's Hospital and tells me about a cream they use that numbs the skin before giving children injections- could your local hospital/GP prescribe it for home use? It might be worth asking about if it reduces her stress levels-and yours!

Also I teach 5 year olds and we often use reward charts to encourage positive behaviours- might it be worth investigating- a sticker gained for appropriate behaviour- a treat after 5 stickers- a bigger treat after 10 etc?

Hope things improve for your little treasure, and thus for you too.

Deb xx