Working parent advice please? balancing motherhood and work

leosmum

:???:
My son was diagnosed about 6 months ago and got to admit our expectations were mis managed we thought after a few weeks of steroird and a corticosteroid injection it would disappear. Sadly not the case and he know has it in 3 joints not one and is sufferring quite badly. He is now on quite a little cocktail of meds....methotrexate, naproxen, prednisolone (weaning him off finally thank goodness!), ranitidine for nauseau and ofcourse folic acid.
I work full time and have told my boss situation, he was originally very unsympathetic to the impact on my work for doctors appointments but has come around recently and is fairly sympathetic. I feel I need to cut back albeit temporarily until my son is pain free and wanted to know if anyone could share their experiences. I wanted to know from a legal standpoint what I can ask for? I dont want for example to immediately ask for a part time role so they cut my pay in half and then find in 6-8months I am able to do a full time role again? I guess I want to avoid a knee jerk reaction but I feel its not working out. I left for work this morning and my 4 year old was hopping as he was unable to put weight on his leg, I had to carry him down the stairs and although it eases after an hour or so and after morning meds its heart breaking. Also doctors appointments seem to be once a month at the moment and then there are blood tests. And then with his immune system being low he caught every bug going round before christmas.....so its this unknown demand on top of trying to be there for him that I am trying to correctly guage to know what to ask my employers for.
Sorry for long post but thought from some of the members of this forum there may well be some good experience to share?
thanks so much

anniesmum

Hi Leosmum,
I do feel for you - I felt the same initially that Annie's arthritis would disappear as quickly as it arrived and life would then carry on as normal. It comes as an awful shock when you realise that it is not going to go away easily. Annie has had it for a year now and we are on a ladder of treatment to try and find "the one" that will help her.
I don't have your problem with work as I work for myself and from home - I have to say it has made life a lot easier as even now Annie has not been managing full weeks at school .(she has the systemic form of arthritis which means she gets very high temperatures, rashes and joint/muscle pain). Like Leo it does subside with her cocktail of meds. My advice based on the last year is to definitly find out what your rights are - can the Arthritis Care team/website help on this as it will be a problem for other parents? I am sorry I cant help there but is it possible for you to sit down and have a frank conversation and appeal to his/her better nature and really explain what is going on with Leo and what that means for work and you. Sorry - I have probably been no help at all but am I thinking of you and hope you get it sorted. It is all such a worrying time.

leosmum

Thanks for such a kind and supportive email. It helps to know that what we are managing is pretty "normal" for families with children with arthritis. I dont know much about the systemic form apart from what I have read, but can only imagine its a bit tougher having a child with temperatures and rashes too. Poor Annie. Poor you.
I do feel permanently guilty- and am obviously not doing the right thing either way but keep hoping that some pattern will emerge so that I know what to ask work for.
Had a good conversation with my boss this morning, as we had an appt with Leos doctor at GOSH on Friday- and they have increased his meds by 50% and prescribed some new ones too. He also has to have his second cortico-steroird injection asap under GA as his knee is so so swollen. And although we had a good conversation nothing has really changed- so I am still asking at hoc for days off here and there.
Hopefully something will click soon and I can work out what is right.
ANY help or advice welcommed!
Thanks

catherine22

Hi i don't have any legal advice i'm afraid, but thought i'd share my experience. When my son was first diagnosed i imagined having to give up work completely and am glad i waited to see how it went as was more manageable than i first thought. Although i only work part time so its easier i can generally at least do blood tests on my days off even if i can't arrange hospital appointments. For me the difficult time comes when he's ok but really too tired to go to school and would be better at home but i end up sending him to school and feeling guilty about it or missing work when he's not really that unwell.

There's no easy answer but arthritis certainly seems to hang around and effects so much of everyday life. It must be really stressful working full time anyway and raising children. I guess you need to think about how much you need to work, like working and how difficult it is to juggle both. I think mums feel guilty whatever they do. I find arthritis as its so changeable can end up taking over your thoughts too, so having an escape at work can also be helpful and gives you time to be you. I realise i'm being vague, you're right, time will probably reveal the right answer.
Catherine

frankiesmum

Hi Leosmum
My 9 year old son also has JIA and is on the same cocktail of drugs as your son. Unfortunately methrotrexate hasn't really worked for him, we're just waiting for the funding to come through so that he can go onto Embrel!! I too am a working full time mum of 4 children and i know how hard it is to juggle everything. I am very lucky to have a very understanding employer who is fantastic. I have used lots of my annual leave for hospital appts but they understand having to take time off at short notice. Only a few weeks ago our HR dept told us about a woman that took her employer to court as they wouldn't give her time off to look after her disabled son and she won!!! So you might want to have a look and see what your rights are within your company. I noticed your son is under GOSH as is mine, we see Dr Pilkington what about you? It's a horrible disease and one that us parents tend to blame ourselves for, i know i do!! I get very frustrated as i want answers but can never get any. We have been fighting this for nearly 2 years now and what a long 2 years it's been!! This site is brilliant though as most of us are in the same 'boat' and us parents can feel very lonely sometimes!! I wish your son well!!

Frankies mum - Michelle x

lindseyhall

Hi, I'm a mum too. Matthew was 18months when he was diagnosed. Please check out my Facebook forum. We really do keep in touch on here and I'm sure you'll find much of what you experience as a family is in common with many of our stories. Best wishes. Lindsey X
http://www.facebook.com/permalink.php?story_fbid=10150112588442884&id=12131682883#!/group.php?gid=12131682883