ASD TONSILS OUT

[Bianca3308]

Hi my sons aged 4 Non verbal ASD. He is having his tonsils out. He stopped eating food 5 months ago and so they is a ruling out procedure as they are very large, anyones child been through this and how did they cope? I feel so bad because he doesnt understand i cant explain it to him. How painful is the recovery? Im worried he will stop drinking which is currently the only thing he takes

We had this done when my son was 3, he also has asd and is non verbal.
Couple of points that may help;

we didn’t go for gas as that can make kids vomit, sedation through Iv.

ask for the first operation of the day, explain your son’s disability and it means he is going straight in at 9am hopefully and less time without food and upset

have fave choc biscuits for when he wakes up, he has to eat and wee before he’s discharged.

ask for ears to be checked also-
glue ear, etc. whilst he’s sedated you may as well have the ears and teeth, dentist in to check for any abnormalities whilst he’s under sedation, teeth x rays, wobbly baby teeth or decay, all can be sorted under sedation

we had allergy tests pricks dome also on arm to see for any allergies.

Watch out for the 7 day mark after op. This is when scabs fall off the tonsils and you can get a bleed, we did, watch for this around that timeframe. We had vomiting blood which freaked us out as we hadn’t been told and it was a blue light emergency as they may have needed to re cauterise the tonsils.
The bleeding stopped luckily so wasn’t necessary.

recovery was v quick apart form last point.

I forgot to say have bottles of ibuprofen and calpol and regularly sue these for the first few days.

Adding to @Lesley25’s excellent post.

Ask if the hospital has a LD liaison nurse.
If DS doesn’t already have one, ask about a hospital passport.
Ask for DS to be in a cubicle if possible.
Ask about arrival time in the morning. If they have multiple patients arriving at once it can be a bit hectic, arriving slightly earlier or later than others can help.
If you think it would help ask for a visit to the ward beforehand.

@Lesley25 @SearchingForSolitude thank you so much. Some amazing things to ask for there. He is currently not eating anything (4months now) so as long as hes drinking hopefully will allow him home. Who would i ask all these other things from would i call the childrens ward? Ive just had a call today from the waiting list team to say booked for next tuesday and to be on the childrens ward at 7.30am so would i call them and request him to be first op? Feel awful because he doesnt have enough understanding for me to explain any of it to him. I think his pead wants some more bloods doing and he is so upset when has them done is it worth me asking them to do it while hes under GA?

Call the ward &/or the consultant’s secretary. If the hospital has one, you may be able to find a direct phone number for the LD liaison nurse by googling or by calling the switchboard if not.

Unless the bloods need doing prior to the operation, you can request they are done during. Remind them on the day too.

Is DS having enteral feeds? If so, they may want to see he can tolerate that if he can’t eat.

@SearchingForSolitude he just has peadiasure in his milk at present. 3x 200ml bottles a day. I will contact consultants sec and ward tomorrow see if can get anywere with these requests thanks so much.

Also ask for the dentist and ears to be checked out, it can’t hurt and they really do try and do them all at once. Google sen dentist in your area and ask them. Ask the waiting list team to be first if you have no luck with consultants secretary, failing that call the ward.

the numbing cream they’ll use on the hand for the IV, it maybe worth asking if you could put this on at home with the plaster at home- if you think he won’t tolerate the hospital doing it.

alot of hospitals have play people so they use distraction with iPads bubbles etc, ask the ward for this after explaining about your son.

if you feel overwhelmed by all these phone calls and you have time if ds is at nursery, go into the hospital and the ward and explain about what we’ve all said above. That will help out your mind at rest also.

Biggest mistake we’ve ever made. Ds has refused fluids since having surgery. We lost all foods over 4 months ago. And luckily he drank milk and peadiasure but has now point blank refused for 2 days to take anything orally even meds. My gut feeling is weve now lost the fluids now aswel. No idea what happens next.

Sorry to post-surgery isn’t going well. I hope as he recovers he starts to take fluid again. Has DS been discharged? Is the paed aware DS isn’t drinking? I ask the last two questions because I hope you/DS haven’t just been left to cope on your own, but I know sometimes DC with additional needs can slip through the net.

The hospital surely wouldn’t have discharged if he isn’t taking fluids @Bianca3308
is he taking any nutrients through IV , once pain subsides you may notice he does start on fluids.
the hospital will all be on this, they’ll find a way and you won’t be alone, please post if we can help in any way we will.

Are you alternating pain meds , ibuprofen calpol to keep his pain down, also you may find it helps going straight to a solid, like weetabix with sugar with milk and double cream for high fat.
try a food source he had when he did eat, you may find he goes back to solids

@Lesley25 you would think that, but I asked because I know of a little girl who was discharged following an operation on the basis the ward thought she wasn’t drinking because she was distressed at being in hospital.

@SearchingForSolitude that’s shocking but I also know in that environment you’re keen to just get them home- gosh I was and I hated the fact our hospital needed to physically see the eating and drinking and going to the toilet. I just assumed they would all do that.

@Bianca3308 if you’re dealing with this on your own, please let the hospital know, and I hope you have support at home.

Thank you. I probably shouldnt of updated in here whilst so stressed last night. We was discharged 4 hours post op and he continued not to drink and had a bleed so returned through a&e about 15hrs post op. Now on childrens ward. We have had a few comments like ‘he will drink more in his home environment’ & a feeling they would like to discharge but for now he isnt drinking at all hes actually taken 100ml orally today which is more than yesterday but obviously nowhere near enough. So its looking like another night in unless we have a sudden turnaround x

@Bianca3308 if you don’t think going home will help, insist you stay. If you are discharged ask for open access to go back if you need to, to prevent the need to sit in A&E.

@Lesley25 your experience should be the norm, and in the exception where it is considered in the child’s best interests to discharge before drinking the child should be given open access to return if they don’t drink at home, but too many DC with additional needs fall through the net due to a lack of understanding.

we had open access throughout the first 7 days after discharge. I had forgotten all about that. But @SearchingForSolitude is right, absolutely insist you stay. We know how hard this is but you could be in a position where this actually makes him eat, and whilst it feels
like 2 spaces back, you may jump 3 .
please just post as much as you like, pm if necessary , we can help.