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Fundoplication and ASD(5 Posts)
DS is 12 and has had acid reflux his whole life. He is currently on omeprazole twice per day. DSs Gastroenterologist wants him to have a fundoplication and has referred him to a surgeon.
The problem is that DS has ASD and absolutely hates hospitals. He kicks off at the slightest procedure, it took me +3 nurses to do a blood test on him and he had to be sedated prior to having a GA for his last endoscopy. He then screamed and swore from the recovery room until we got in the car to go home. It was awful, there was nothing I could do to calm him down.
I'm really worried that DS will not cope with being in hospital for a few days with a drip and feeding tubes. I'm scared that he will spend the whole time screaming and kicking off and I won't be able to cope.
Then there is the strict diet afterwards and him being off school - he hates being off school.
DP says just to get it over and done with now whereas I'm thinking maybe we should wait until he is older, however there is no guarantee that he will be calmer. The surgery will be a Sheffield Children's Hospital so I'm sure they've come across difficult patients before but it won't be nice for other families to here DS swearing at the top of his voice.
If he doesn't have the op he will need to stay on the omeprazole but have regular checkups and endoscopies which he will hate.
I know nobody on here can say definitely do it or wait but I wondered if anyone has been through similar and how it worked out?
Any advice would be appreciated.
I haven't got specific advice as my dc have different issues but just wanted to send some you sound like very caring parents and this sounds like a difficult decision.
If I was in hospital I wouldn't mind your dd shouting.
If you rang nas would they be able to see if they have any resources for you?
Can you ask for an appointment with consultant at the hospital specifically to discuss what adjustments could be made for him eg position on the surgical list, private room, sedatives if that would help him (I don't know what is possible), timing of op - could it be done in school holidays to remove the issue of breaking school routines?
Would they have a play specialist or anyone in hospital with experience of helping a child with asd who can help by meeting you and him beforehand? Consultant should know.
Would compiling a visual book of exactly what will happen in what order help him?
Thank you for your reply.
There are play specialists but the last time we went he wouldn't engage with them as he was more interested in hiding in a locker
I have booked an appointment with the surgeon to discuss it further, hopefully he might be able to put me in touch with someone that I can talk to about all of this.
Sedation has crossed my mind and I would hope that it might be an option post op if he's too disruptive and distressed.
You can also request that your ds is sedated post op as well as pre op.
Dd was sedated post op and it made a hell of a difference to how she was when she woke up.
What also helped us was to phone the ward a week before the op and explain exactly what dd was like, and requested
demanded she was in a single room for the sake of the other children that was secure and not in sight of the exit door.
And also that the whole team were aware that they're was no waiting involved for her, namely she wasn't moved to the anaesthetic room until it was clear and they were ready and waiting, and the route to get there was absolutely clear (including the lift).
Thanks F1ip I'll try ringing the ward beforehand to warn them. I'm sure they will be quick to sedate him and move him to a side room once he gets going
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