Me again! I know I have a few days break from posting buit I am trying not to become too obsessed with the computer!!! As much as posting here really does always seem to be very helpful...
I thought I owed you all an update on our Maddi ( was too hard not typing her name before!)
She is our 7yo with the 'mystery illness' who after 12 months of medical intervention and constant meds, is still undiagnosed. Currently struggling with anxiety that I know is directly related to her feeling sick every day.
We have her on half days at school.. In the end, even this was too much, her nausea so bad I was getting a call from the school sometimes only at 10am! My husband and I though "enough is enough". The naprosyn may well have been helping control inflammation and therefore she was having "little' pain, but we were sure it was causing nausea so severe she could not function, and it was constant day and night nausea. Also, her anxiety was extreme and we did not know how much was her 'illness' and how much was simply kiddy nerves.
So we did something drastic - and took her off her meds - completely! We figured her little body just needs a break from toxic meds - even if it causes a flare up, we'd be happy with 2 weeks of no nausea. Also, we wanted to know where her illness was at - maybe she could do without meds for a bit.
Its been 9 days of no meds - immediately her headaches stopped (she has had a constant headache for 12 months) - at least she has not complained of a headache and she normally does every day.
The nausea has subsided - it is still there a little bit - but not constantly - the first week at school (still half days) her confidence increased dramatically - we still have issues at school as would be expected - but obviously when she is feeling 'better' she is more confident and less worrried about the daily dramas of a 7 yo in the schoolyard.
She still has little 'niggles' of pain - but not much - she has always had little 'niggles' even when on naprosyn.
Our only concern is yesterday afternoon she was really happy, feeling good about school etc so she became extra confident and ran her heart out outside (as she has always seemed to deliberatley push herself when she starts feeling good to make herself 'strong' - and most times regrets it). The weather had turned, so it was cold and started to rain.
She was inside for 5 minutes when she said "I should have known that was not a good idea - now I have a pain in the leg" - and she did. The pain lasted 1 hr - not 'scream out' sort of pain, but teary, miserable pain. That is the worst pain she has had for 3 or so months. The cold weather always used to bring on 'flares'.
So maybe she will end up on another med ( next one apparantly being pred - again) but we are just happy for her to have nausea free parts of the day - if the pain and fevers come back we will deal with it then.
We think we are doing the right thing....
How does anyone know how their condition is going if they are on constant meds??? thats what I want to know.
So we are staying med free, unless the pain gets too bad or fevers too frequent. Hopefully this will not harm her for the meantime - we think we are doing the right thing - and we have the support of our doctors who too, are hoping maddis condition will "settle".
Imagine that - no need for meds..........heres hoping!
Cheers!
Poor Maddi I hope she gets well soon
Take care
It so upsetting watching your children suffer. Maddi knows what to look out for too. Giving her some 'fun' time without any serious consequences can only do her good (mentally). As her parents you will 'know' when it time to put her back on meds.
Hoping she feels good for as long as possible.
I think it is a good idea to stop medication once in awhile to evaluate how dependent your health is on medication and to know if you really do need the medication. I am on Enbrel and I stop taking enbrel probably three times a year for a month just to see how bad my RA is without it. My RA is usually under control for about three weeks and then begins to flare up again. I'm just hoping that one of these time the RA won't come back. Best wishes.Hi,
Glad to hear that Maddi is doing better without meds. I myself have had RA since birth and was never on anything stronger than an occasional aspirin until just recently when the docs put me on Naproxen. Being able to enjoy being a child is so important. I'm so very glad to hear Maddi's confidence is coming back. That has to be a help.