Had the steroid injections

illihor

Well we're back from Bristol (came back same day) from Kayleigh having her steroid injections under GA. It wasn't nice as she cried being put to sleep and woke up in a lot of pain Her face is still sore but it's easier now as she's not lying down.

They ended up doing both wrists, knees and both sides of Jaw and her right hip. The plaster for that is in a really odd place didn't expect them to go in from that angle dread to think of the length of that needle **shudders**

Her right side of face is still puffy looking as are her wrists. Her knees seem to be smaller and I can't tell about the hip.

Still haven't been told the full results from her MRI but they did say they were sad it was in her neck and they can't touch that area with steroid injections and her jaw quite badly. They were even more worried that after being on methatrexate for 7 months she's still got "active" arthritis. They didn't want to do any more than those joints (got the feeling they wanted to do more) but said it would overload her as this is a lot of joints and she's only 4.

Just spoke with our consultant here and told her everything that had happened and that Bristol wanted to speak with her before adding different meds, they still want her on MTX but adding something else to the mixture but I can't remember the name she said but sounded worried on the phone about this drug :?

Thankfully she's got none of the side effects that she had with the last GA but they made sure she got all the meds before they work her up as they realised that she was in more pain this time and her stomach if fragile at the best of times. She said she will call mne back on Monday or Tuesday once she's spoken with Bristol to discuss what's going to happen.

Michelle xxx

dreamdaisy

I have no idea what to say. Poor child and poor you - sometimes I think it's worse being the watcher, the helplessness is dreadful. I am so sorry, I wish I could wave a wand and make it all disappear for you both but I can't. Is she too young for an anti-TNF treatment? I know nothing about age restrictions on those. I hope she can rest now and try to re-gather some strength. Dreamdaisy

illihor

dreamdaisy wrote:

I have no idea what to say. Poor child and poor you - sometimes I think it's worse being the watcher, the helplessness is dreadful. I am so sorry, I wish I could wave a wand and make it all disappear for you both but I can't. Is she too young for an anti-TNF treatment? I know nothing about age restrictions on those. I hope she can rest now and try to re-gather some strength. Dreamdaisy

I think it's that sort of drug as it certainly wasn't naproxen she mentioned although bristol did but our consultant said something else, I've seen it mentioned on here before but seriously can't remember she just said if it was she would discuss it and all the risks with me :?

Your right being the watcher is horrible, obviously once asleep we're not allowed to stay with them so you sit and worry, I tried to do puzzles but couldn't concentrate. It doesn't get any easier either she's had a GA 3 times now, first time she SCREAMED the place down, second just sat and watched this time got herself all worked up and cried herself to sleep but it was a tired cry rather than angry.

Michelle xxx

speedalong

Hi Michelle,

sounds like a horrid day for both you, good that it is now over with. Hope the jabs make a difference and she has a good spell and is able to enjoy the rest of the summer with more freedom of movement and less pain, once the swelling goes down. If the meds she is on have not stopped the progression of the arthritis then adding a new med in, although could be problematic to begin with, will help her in the longer term. What a shame about it being in her neck too. Hope you have some nice days planned too over the next few weeks.

Speedy

illihor

Feeling a bit scared and unsure what the plans for the future holds. Our consultant just called up and said she wants to see us tomorrow as the top dog in Bristol is NOT happy with her progress. She mentioned another pulse of steroids (got a feeling that will be done before our holiday, which we go away on friday) then yet more bloods before she starts on a new medication that she will talk to me about tomorrow.

I thought she was doing so well especially considering what she was like before MTX. I guess the fact the arthritis is still active is what is concerning them

To top it all we still don't have her shoes and they don't think they will be done before we go on holiday grrrr this has been on order since beginning of June she's been in slippers since about 2 weeks before that so May time and it's really affecting her walking and pain levels as her arches have dropped and she can't walk as far as she says there are stones on her feet.

Will update once I know more tomorrow but I'm scared of what it will bring

Michelle xxx

saraht

i am so sorry that you daughter is having to go through all this, it is terribly upsetting and i know how it makes you feel, please let me know how she gets on. good luck.