Thursday, 26 May 2011

Time To Demand Some Answers!!!!

Why oh why do we have to fight for the basic care for our special kids???? Anyone got an answer.....nope me neither *shakes head*

We've got a follow up appointment with Becca's Rheumatologist and can foresee how the appt will go:

  • We'll walk in Rheumie will comment on how well Becca is walking now since the last time she saw her
  • She'll ask how things have gone since last appt
  • She'll ask for the physio's opinion on how she thinks things are going
  • She'll then try to fob us off that everything is ok and that we won't need to see her again for a long time blah blah blah

BUT...... this is where the scenario will change, we (as her parents) will turn round and say to Rheumie

  • what is she going to do about the constant pain Becca is in?
  • we'll say how tired she is at the end of the school day and that she is that sore AND tired she flings her school bag at whoever is collecting her as she can't carry it anymore
  • we'll be asking how a child of 10years old is supposed to live on painkillers that half the time don't even touch the pain - the gp has prescribed stuff for becca and she is at the maximum allowed for each medicine :(
  • we will also be asking for a referral (which is our right as parents) to the rheumatology clinic at Great Ormond Street Hospital in London.

As a parent I hate to see my daughter in pain but at the same time I hate having to fill her with medicines everyday that don't even appear to work. Whose to say that in the future her body will become immune to these medicines and then when she really really really needs them there won't be anything anyone can do for her!!!!!!!!!

Take care my friends and thank you reading my rants again, I do appreciate your comments so please leave them underneath xxxxxx


  1. Ugh, that is SO hard :( When she's at home, have you tried using ice packs on her painful joints, as well as the painkillers she takes? It just might be a natural way to help ease the pain without all the complications that meds have. Get a wheat bag, or blue gel pack and pop it in the freezer to stay cold, then wrap it in a tea towel (never put it directly on skin), and leave it there for 5-10 mins. Then repeat every 2 hours. xxx

  2. Aaawww bless her, hope you can get some answers. x