Tonsil/Adenoid removal

[khamps]

Our son is 4.5, diagnosis of ASD level 3 at well as a chromosome disorder. We have had a hideous couple of years with ear and throat issues, he had grommets in Jan which put a stop to ear infections but the ENT wanted to hold off on tonsils. Since then he spent almost all of last winter on antibiotics and it's looking to be the same this year. We were so sure he had PANDAS last year as his behaviour was manic and he developed what seemed like really OCD behaviours, but these calmed down over summer.

We have an appointment in a couple of weeks that I think will trigger tonsil/adenoid removal as we were in hospital last week after an infection shot his heart rate up to 200, but for some reason I'm so nervous about him having it done?

Has anyone here had tonsil removal for a non verbal autistic child? How did they cope with the pain, particularly when their own comprehension was limited?

I'm also worried about it having a negative effect on things we have worked hard to make manageable. He sleeps ok although seems permanently tired and he does snore. He also doesn't eat too badly although is difficult to make try new foods.

Any positive stories to reassure a nervous SEN mum? Also happy to hear any negatives or struggles as really want to feel we have the full picture and are going in with eyes wide open.

Two of my DS’s have had their tonsils and adenoids removed. One has ASD (not non-verbal but to give an idea of his needs he has an EHCP, social care support, HRC/LRM DLA) the other doesn’t have ASD but has complex additional needs (has an EHCP, social care and health budget, HRC/HRM DLA).

Hospital visits are hard but they are made easier by things like always having a cubicle (they have this for medical reasons anyway), hospital passport, play specialist support, being very clear to staff about their needs, being first on the theatre list. We use the Paediatric Pain Profile for DS1 - this doesn’t rely on him communicating pain. Instead, it looks at how they are on a normal day compared to the day you are rating them.

As well as a hospital passport, some hospitals are able to put a flag on DC’s records to alert staff.

You could also ask for a visit to the ward beforehand.

That's helpful thank you.
Being first on the list is a definite essential as the fasting part is always a challenge and he doesn't do waiting well. Will definitely ask about a separate cubicle too!

Also look if the hospital has a learning disability liaison nurse. They can still help even if DS doesn’t have a LD diagnosis.

I will definitely ask, it would be being done privately so I'm not sure they will but they were good at flexing for him being first on the list last time.

Have his favourite foods ready straight away as after the procedure he will need to eat and rink and go to the toilet before they let you discharge yourself.

Ask the anaesthetist for a sedative beforehand so he’s woozy when they wheel him down and gas can do the rest when they o it then neural in.

get dentist in at same time, x rays etc. going private means this should be possible
have ears checked also, grommets can be added at the same time if they think necessary

Watch round 7 days for bleeding, the scabs fall off then and you’ll notice it if he vomits blood so don’t be alarmed, but you’ll have to go back in if that happens, but watch out for funny eating around that time, and watch will movements .

Thanks so much, unfortunately the dentist thing doesn't seem to be a thing round here as I've asked a few times (he has had a couple of procedures).
Yes I really need to think of food he will eat there as he normally goes nuclear upon waking from general and they have let us immediately leave before but I doubt they will this time.
I'm so nervous about recovery but he is on his second set of antibiotics in 3 weeks and I know it just needs to be done.

It is the special care community dentist who usually tags on to other procedures and does dental exams/work for DC with additional needs. I don’t know how that would work with having an operation privately. Unless you also go privately for the dental work too or it is private but done in an NHS hospital.

It is worth a referral to the special care community dental service if DS isn’t already under them/been referred in case he needs any work in the future.

Thanks so much! We were referred to the specialist dentist 2 years ago and havent heard a peep apart from a letter about 6 months later saying they had a long waiting list. In the mean time I am trying to get him ok with the standard dentist, I'm not sure he will ever let them near his mouth though haha!

DS1 is a teen. He still doesn’t sit in the dental chair and absolutely nothing goes in his mouth. The only time the dentist gets to properly examine him is when he is having an operation for something else and they tag on.