Have you ever said no to a doctor/paediatrician?

[Opal93]

A few years ago, when my son had his review by his paediatrician (he has ASD) she wanted to refer for genetic testing. I refused as a. Even if they did find something, nothing can be done and won’t change anything and b. The cause of autism is unknown so I didn’t want him poked and prodded when it can’t even provide answers for certain. She wasn’t very happy about me refusing, and also at the time his head circumference wasn’t following the chart on the centile so he was referred to a more senior paediatrician, who monitored its growth for a year and then signed him off as she was happy with it. It really badly effected my mental health at the time, I became convinced he had everything from Zika virus to a stroke in utero. He also absolutely hated the investigations and it was traumatic. I was so happy when it was put to bed, but I recently asked for him to be referred back as he’s six and needs OT and possibly referred to CAHMS and I had to refer him fo the paediatrician again as that is the only way to get access to these services where I live. I am also starting to feel anxious that they will push genetic testing/start the head circumference thing again. WIBU to make it very clear that i am only there to get access to the services to help him with the challenges he faces now due to his autism, and that I really don’t want to go on a fishing expedition for things wrong/causes? I appreciate some people would like genetic testing, but my personal view is to just accept what is and deal with the problems it brings. I am autistic myself and I felt so guilty for a long time that I “gave” autism to him. If I found out there were genetic faults that came from me I wouldn’t cope well.

toocold54 a blood test is very traumatic for a child with autism. Getting his head measured is hard work with him but he had an ultrasound of his skull which was traumatic for him and scans etc. Of course I agreed to it because it needed done but I was thankful when they said they were happy and no more investigations were necessary, so it would be very hard to go through that again

Jade Seahorse, I can see the other side of it when I read stories like your dds. If you don’t mind me asking did she have the epileptic symptoms young or did they start later in life? If my son had a history of seizures I think I would definitely accept as that is something that requires treatment x

JadeSeahorse I meant above! X

I said no to my consultant when I was pregnant with my youngest. She was adamant I have a C section as he was measuring very large. I however felt very happy to go with a normal birth as my first had been a very easy birth indeed.

She was so cross with me saying things like on your own head be it, she was absolving herself of any responsibility etc etc.

I had an even easier birth than my first - over in an hour and a quarter and half a dozen pushes and he was over 9lb

My autistic child was offered testing too and I refused. For me it is always a cost benefit weigh up and the benefits weren't enough to outweigh the impact.

Stand by your instinct.

And if getting a blood test out of an autistic child isn't traumatic (and for some it isn't) then you need to come and see them attempt one for mine

This thread makes me very appreciative of my gp. He lays the options and information before me and explains his recommendations but it’s always been clear that the decisions are mine.

He’s very respectful with the dc, takes time to explain what is required and seeks consent to touch and examine.

I’m very protective of my ds, and I feel that the various professionals we deal with know a lot about their specific area but lack my I depth knowledge of my ds, and lack a holistic view. I have to balance the benefits of any course of action against the difficulties and trauma he will experience accessing it.

I think you’re within your remit in refusing anything that you feel is unnecessary. But I will gently suggest that you address your own anxiety separately if you feel it affects (or causes you to doubt) your judgement.

You need to do what’s right for your child and at that time at least more tests that would distress him and you for very little if any gain wasn’t necessary. I probably would have made the same decision. I’m assuming you can come back to those tests in the future if they are truly needed?

YES. I spent far too long feeling pressured into agreeing to procedures and tests that I didn’t want dd1 to have, including a skin biopsy for genetic testing in the Netherlands. Same as you, the genetic testing wouldn’t have “fixed” anything. In the end I changed my mind because we wanted to have more children. I feel so strongly that parents should say yes/ no/ feel comfortable to ask more questions re medical treatment and make a decision based on what they think is best.

IMO, you should question every recommendation a doctor or any person in authority makes. And do your research to see whether it apples to you, and why. Especially when it comes to children.

There have been many situations where I have gone against one of more doctors' recommendations to achieve a much better outcome for all concerned.

@Opal93 You are his parent. You do what you feel is right for your son / your family. You do learn to grow a thicker skin and NO tends to flow out much easier when you’ve got to this point. You make the final decision, always.

@Greygreenblue her son has asd, it won’t be easier. My son had a blood test at 2, they thought they could do it with ease using a play specialist distracting him 😂 4 people pinned him down and in the end, best they could do was prick his finger and squeeze a few drops out whilst 4 people held him down.

He’s 7 now, he can’t go on adhd medication because he cannot have the blood tests. He’s had to have midazolam sedation before and it didn’t even work. It’s an absolute nightmare! If he gets poorly, I have genuine sleepless nights of worry incase he has to go to the dr. It’s really not easier when they are older.

Yes, I refused to give my DS formula when the consultant was adamant he needed it to gain weight when he was around 10 days old. I was forced to sit and pump 2oz in an hour before they’d let me leave, I actually pumped 4oz in 30 mins. He was BF for 20 months, never had a drop of formula and is totally fine.

Sometimes they don’t know best.

There may be a diagnosis which would open the door to some advantage for both of you. For instance, in medical treatments, physiotherapy, educational support at school, or some benefit payment allowances.

   Genetic testing is  done from a small blood sample, very quick to take.  No more distressing than  any other blood test; hardly worse than a  vaccination. 

  I've provided blood samples for gene research into  two unrelated    medical issues in my family.   The research may take years and might be too late  to benefit me; but  could  be of future benefit to my children or theirs  by advancing medical knowledge  and better treatments .

Anything to do with with genetics, and who might have passed on what, is stressful and can be deeply upsetting for family members. I have a lot of sympathy for the way it makes you feel.

Having said that, I agree there are good reasons for testing where a genetic diagnosis might reveal other health issues in your child, or things to look out for in case they occur in the future. Additionally, if your DS might one day think of having a family of his own, having this genetic information available could be really helpful to him.

I agree it's really hard as a parent to go through this, but I think we have to try to set aside our own feelings. There are no easy answers though, and I do appreciate doing the blood test would be a really big deal for him.

Genetic testing often isn’t offered to adults, I think it’s wrong to deny your DS of that information. Also you say that the paed said nothing can be done for him, that’s not necessarily the case in the future, particularly if a genetic disorder is flagged that requires monitoring or can be helped by prophylactic treatment. Ultimately it’s your choice of course, and I respect your decision, but it’s not one I would make

I think if you think in terms of what's best for your son you won't go far wrong. So ask "how will this testing benefit my son?" And "how might the findings change the outcomes for my son?" , "Will it open up different treatment or support?", "He gets very distressed with check ups, will the benefits be worth it for him?" Etc. If the doctor feels these tests are worthwhile they should be able to explain why. If there's no medical reason then you can obviously decline, however if there is a medical need then parents don't actually have the right to any say. So the fact that they let you decline last time implies that the benefits are not clear cut from your son's point of view.