Yes, I understand that’s how mandatory reporting works. My comment was not, in any way, an explanation of how mandatory reporting works, or intended to address anyone specifically in their capacity as a mandatory reporter. I think surely anyone who is a mandatory reporter would understand that. My point was that I don’t think a single line in an Instagram story by her mother to the effect that they trialled taking the child off a “pharma drug” is necessarily enough for us to assume they did it against medical advice and that they should be reported for it. The “we” that I was referencing was us on this forum. The reason I said I’m not convinced this is a reportable issue is because we have no idea what Luella’s doctors have said about the medication, not because I’m saying that it wouldn’t be a reportable issue if there was concern.
If they are in fact acting against medical advice in relation to her drugs, then I certainly do hope that there are people in Luella’s life, such as her carer or their family, who are questioning them about it and who would act appropriately if there was concern for her welfare.
We know that they have been recommended to pursue the surgery and that they’ve put it off and I don’t agree with that decision personally but that’s another topic.
I’ll just add that I can see how the first line in my original comment could be misinterpreted. My point there was that I feel some caution is warranted on our part before we assume neglect based on one line in an Instagram story. Not that a mandatory reporter should exercise caution if concerned.
We know that Erin constantly acts against medical advice. We know that neurologists don’t like to work with her, we know she’s changed hospitals, she frequently puts a certain hospital down. She frequently puts the medical staff down, complains about everything at the hospital. She blames vaccinations despite just yesterday saying doctors believe it happened in utero. Reality is we are so privileged for our health system and she should be grateful for the access she has to so much help. Especially now with her NDIS funding.
The reality is, if she is so desperate to get reprieve for luella, she would organise that surgery ASAP and she would be keeping her on any and all anti epileptic medication. I personally have not suggested anybody report her, but I find her to be extremely irresponsible and I can imagine that dr’s find her incredibly frustrating and may have even reported her themselves.
As someone with epilepsy on a combination of anti epileptics I can’t imagine my neurologist ever saying let’s just wean one off shall we. Why would they? I’ll be on them for the rest of my life as I have reached seizure control. Luella hasn’t- even more reason not to wean off. I know she has to have breaks in her steroid regime, which she is doing now, so there is NO way the neuro’s would be like ‘now’s a great time to come off some other drugs’ don’t buy it for a second.
When you have a diagnosis like epilepsy, the goal is never to be medication free- it’s not possible- the goal is to be seizure free, every seizure does damage, every seizure stops you driving for longer and longer each time and every seizure could kill you if you are in a dangerous place at the time (driving, stairs, pool, bath). My last seizure I had a severe head injury from falling into tiles and the corner of the kitchen bench (marble slab).
Anyway, I digress, the point is - I don’t believe that any reasonable Dr has said whilst Lu is having a break in her steroids to also take her off other ‘pharma’ - it’s ridiculous. And why would you want to. This again comes down to Erin’s privilege. Some people in the world would do anything for those kinds of medications and any type of relief from their seizures and here’s Erin constantly thinking she know better than Australia’s best neurologists. The mind boggles. Sorry for the rant again, but she really upsets me and my heart breaks for Luella everyday. The best thing that ever happens to Lu was getting that lovely carer from NDIS, she looks so much happier. Erin needs considerable mental health treatment.