Have you ever considered refusing a treatment/therapy for your dc?

[meltedmarsbars]

Just wondered...

Its the "well the tests show this so we could try that" sort of stuff with no proven history that I'm talking about, not the life-or-death blood transfusion.

Not so much treatment but I have refused tests that I feel are not going to benefit ds or lead to treatment for example thye wanted to do more brain scans mri's to determine what may have happened eg bleed or lack of oxygen.
I also politely delined the involvement of a couple of professionals over the years who didn't seem to be offering much.

I think part of my role is always to weigh up the benefits of any treatment against the actual therapy or treatment.
Our kids are prodded & poked & assessed enough, IMHO there has to be a good reason to put him through something new!

It seems to me that because there is not "cure" for dd2's condition, the medics feel compelled to offer more and more tests to check all her bits and bobs, and when they get iffy results, feel compelled to offer yet more therapies which may be of minimal benefit to her and are a complete nightmare for us to implement!!

Maybe I'm just feeling too lazy to take on yet another night-time alarm!

I don't know if they feel that they have to offer something or they think that you expect them to have soemthing else up their sleeve - does that make sense?

have you asked, what will happen if you do nothing, or is that not a question you want to ask?

& I don't believe for one minute that you are being lazy.

Well, I think we have reached a peak, as it were, and we are on the downward slope now. We've had the "you need to think about the time when you cannot do any more" talk from the specialists a couple of years ago.

I feel that they are scrabbling around for stuff to do to her and that the medical profession compels doctors to continually intervene even when it may only make a small difference to the child.

They are very difficult conversations to have, I don't think dr'S would chose to put a child through procedures that are going to do more harm than good but if treatments have mixed results it must be hard to predict.
& as a parent we always look to the experts for advice & hope for them to be honest & open.

Maybe what also get to me is the impact each time on the rest of the family - sometimes I feel like pointing out to them that she is only 1 out of the 5 of us, there are 4 others in this household too!

But the Hippocratic oath always puts the patient above all else.

You are absoloutely right mmarsbars - you have to balance the needs of the entire family & you will always make the right decision for your dd & your family, just sometimes the best decision doesn't always seem to be the obvious one IYKWIM??

Thanks for the listening ear while I have a grump !

You are not grumpy.. if you want to see grumpy i'll introduce you to my dh

Feeling less pressured today - maybe because today's hosp appointment got cancelled so we've had a day in the sun at home instead!

Yes. I've refuse input from the Autism Outreach team because of their extremely low expectations of ds and their insistance that he is a visual learner, and that he'll not be able to learn phonetics .

I said no thank you to a social skills group for DS2 (after a couple of sessions), it was very basic and mostly seemed to involve colouring in and the other children and parents I met in the waiting room seemed to have little in common with DS2.

We get more out of a trip to the local play park.

And I've just said no to 'More Than Words' course

i said no to a lung CT Scan cos he would need another GA (already had 7 at 11 YOA) and there would be nothing they could do if what we suspect is confirmed - so head in the sand here and will deal with the symptoms as and when

I have serious doubts about the helpfulness of all at CAMHS, and may reach a stage soon where I sever our relationship in the nicest possible way.

I am giving them one more chance to get their act together and prove they can do more than just write thin reports that say absolutely nothing about my child and do naff all to help him.

Grrr.

I haven't fought that hard for therapies. I'd much rather have an active social life for DS rather than put him through boring and gruelly therapies. I reckon that having people around him and fun stuff to do is surely better for speech, mobility and motor skills than sitting in a room with a grown-up doing stuff that he can't relate to or causes him pain for an hour.

An example: the physio got him a pedalling machine to exercise his poor, fucked-up legs (surgical intervention caused more problems than it solved). He was meant to sit on a chair and pedal, except the pedals were too stiff and he wasn't interested. Neither school or physio had thought of putting him on one of their adapted trikes in the playground.

It's often function over fun IMO

I have already.

Ritalin was strongly advised for DS1 but I don't want him to take it unless his ADHD starts to impact severely on his school work.

meltedmarsbars, you say that you have had the "We've had the "you need to think about the time when you cannot do any more" talk from the specialists a couple of years ago.", but have they had that talk from you? I think that if you want to limit treatments to essential ones only, they would respect that, but need to hear it from you, IYSWIM.

I guess it depends what no proven history means - I know a few kids that have had deep brain stimulation, mostly with the thinking that 'now' isn't tolerable, so any improvement is worth the risk...but it's not as straight forward as it sounds.

Lou, I got the feeling that the specialists felt they had to let us know that the path will not always be upwards and smooth, that the condition is life limiting and we need to think about what that can mean in practical medical terms.

Snowmash, In no proven history, I meant that dd2's condition is so rare that there is very little previous history to base treatment on.

we need to take each intervention on its merits and take more of the weight of the decision ourselves. Its a balance.

melted you have just written my feeling on the constant intervention. It feels as though once they have you in their grasp there is no escape.

Ds just had a scan and they're talking about long term intervention for him, but he has no symptoms and it was just a routine scan.
I cant help but think wonder if we could delay treatment for something thats not causing him problems until it actually does cause problems.

out of interest does anyone regret refusing treatment or interventions?
How assertive do you have to be to get them to listen to you?
Did it effect your relationship with the hcps?

In the past I have discharged my ds from hospital against drs advice (my gut reaction was correct, he was misdiagnosed by an ignorant dr so def don't regret it, glad I trusted my instincts despite everyone else who was present).

My ds condition is also rare and the only thing "charted" is deterioration, but diet has kept it at bay - so drs call it anecdotal, never mind, it's our life and we are making most of it.

For a tragically funny medical read, try this book, it describes medical approach very well.

And keep your head, drs really don't know everything.

Actually, it gets easier as he got older and I have honoured his likes and dislikes - eg we no longer have regular blood tests, but try to work around with others where possible.

Nellie, don't worry about any battles, I am sure your team is grown up enough to be open-minded.
My friend who is also dealind with a severe progresive condition said no lots of times. Sometimes she asks questions like what benefit is there in this that or the other for my child? can you guarantee the improvement and how long will it last?
At other times she would say she wants to think about it and they might revisit at the next checkup. But no one has discharged them out of the annual checkups nor us.