Operation to have adenoids and tonsils removed

[yakkiyakkiyogi]

DS (3.4) has had sleeping problems for as long as I can remember and was choking many times during the night, at times seemed like he'd stopped breathing for a sec and then returned to his usual loud snoring. After his very recent dx for ASD, the paed referred him to ENT and we had the appointment today.

She said outright that he has to have adenoids removed and possibly have tonsils also either removed or reduced which she will decide when he is under general anaesthesia (he wasn't letting her see his throat properly and scratched her arms a lot).

I didn't expect her to advise an operation and had gone into the appointment thinking more on the lines of medication or maximum a sleep study. Now I'm getting very anxious thinking of pre and post op difficulties that can arise especially since DS is very very very sensitive to touch in terms of needles and medication etc. Plus he is pre-verbal and there is no possibility of explaining anything to him. I'm thinking how he'll cope with even being put to sleep, he won't let them even put the mask on his face let alone breathe in an out like they ask to!!!! Also if they put any IVs then that's a disaster waiting to happen because he'll try to pull it out as soon as he's aware of it. He will also lose it if he wakes up from after the anaesthesia and sees all these strangers around him because apparently I'm not going to be allowed to be with him. Also what if he wakes up during !!!!

I guess what I'm looking for is any reassurances / experiences of you all if your dc had this or any other kind of operation that required general anaesthetic and how did they and you cope with pre and post op especially with regards to ASD?

Thanks a ton

I had this same op for ds after recent asd dx and ds had just turned 3. Firstly, don't go with gas- it can make children vomit and we wouldn't have been able to explain this to our pre verbal ds at the time. Ask specifically for a morning apt as its nil by mouth so you don't want to exacerbate ds if it's an afternoon apt. Ask for ds to go first also.
We went with an injection in the hand slung over dads shoulder and it was all over in 30 seconds with ds asleep. We also asked if they would check for glue ear and do allergy testing (pin pricks) whilst he was under. Had I known, I would've also asked for a dentist to check and fluoride dss teeth- you can ask for this with ds dx.
Ds was groggy coming round and once the nurses saw he was round they bring him straight up- ask for the same. They won't let you go home till your ds eats something - take his favourite food(s) biscuits were a winner for us. They are still on morphine (or equivalent)for a couple of hours after op but the moment ds ate, we got the green light to go home. Lastly, don't book a holiday for at least a month after the op. We were told after 7 days it would be fine but the reality is that's when the scabs at the back of the throat start to come off and cause pain and bleeding. Our son bled at 8 days. Watch out for any of this- he vomited it back up and was pale so easy to spot. It was the best thing we did for ds and his sleep and his horrid tonsillitis. He ate better, slept better and diet variation all increased.

Oh I forget, they give you about 6 bottles of ibuprofen and paracetamol - for the first 7 days they encouraged us to never miss a 4 hour dose and use ibuprofen also as the pain for the first week is hard, so never let them get to that point. Also go with porridge weetabix favourite biscuits whatever they fancy for the initial 3 days after op.

Thats really good advice. Thanks Lesley25 , I've noted down all of it.

Giving him pain relief every four hours is going to be an issue all in its own as he just screams and kicks and wriggles for his life whenever he has to be given any medication. But it'll have to be done for his own comfort.

What did you when he had vomit with blood? Did you take him to A&E?

DD had her tonsils and adenoids removed at 4 years.
We didn't tell her until the last minute, recently she had a different op now 13 years old.
Lots of younger kids were also having ops, the majority of them at your child's age had no idea why they were there.
When DD had her op at 4 yrs we were given a card which advised us to get in plenty of calpol or equipment, plus a hot water bottle.
As that helped to ease the pain at the same time as the calpol.
DD had no bleeding afterwards.
DD needed pain relief every 4 /6 hours, so sleepless nights for almost a week.
DD ate better after the tonsils and adenoids were removed.
One parent will be able to go to recovery room as soon as he starts to wake up.
Maybe wrap the hot water bottle up in something soft that he likes.
Pre-op is normally a week beforehand, so write down any questions you can think of.
Anthesitist will come round before op as well as .
It's always nervous when you sign the consent form and hand them over for the op.

No, if they vomit blood you ring an ambulance. They will then take a view if vomiting blood continues to go back into theatre and cauterise the area- seal it. It was scary, and he had to stay overnight sleeping with dad but they have to make sure he didn't bleed again for 24 hours. In hindsight, I can remember that day that ds was completely off food and extremely pale so go with your gut feeling. It is sleepless nights for a week as ds woke every 4 hours once medication wore off. Research other ways of getting paracetamol/ pain relief into your child with the pre op meeting- they might be able to do suppositories? Initially our ds hated all medicines - we went with a syringe and had to hold him down with tiny squirts into his cheek to prevent him spitting it out. Once he realised it wasn't all that bad (taste wise) he was much better, hold out in your other hand (or get some one else to) your sons favourite treat so he understands once he takes medicine then treat. My ds likes mint so I used to have a toothbrush (or dad did) for ds to have as soon as medicine was done. Use "first medicine then treat" with the teensiest tiniest bit first. We were told in no uncertain terms that ds MUST take pain relief as it's terrible for them otherwise.
I also wouldn't have gone back to normal foods straight after 3 days. In hindsight I would've gone with pasta wetabix mushy stuff for at least 2 weeks.

With medicines too I didn't go with the sugar free option purely for taste. And I went with calpol and neurofen strawberry which are both sweeter. The pain relief the hospital give you is own brand and a lot harsher in terms of taste then the above.

I'm writing everything down definitely. Really like the idea of having toothbrush ready for after medicine. DS really likes toothpaste and has no interest in treats of any kind whatsoever (only eats 2-3 things with a lot of sensory issues around foods). Post op I think he will be surviving only on milk as he doesn't have any mushy or soft foods at all :(

iwanttoscream - sorry for the silly question but where did you put the hot water bottle ie throat or back of neck or anywhere else?

I've been doing some reading and came across a published article regarding anaesthesia's effects on children with ASD and the types of safer anaesthesia for them. Hope the hospital staff are willing to listen and understand as its not at our usual hospital.....worst thing in the world are medical staff who brush off the parents' concerns without even listening....have had a few of those so am quite wary of all now.

At the side of the neck/ear, I think it was to help with pain relief. As having the tonsils and addenoids removed can give them earache.
Though this was nearly 9 years ago!!!!
Ask the nurse, when you go for pre-op.
I just followed all the instructions on this leaflet.
Hope it goes well on the day and wish your DS a speedy recovery.
Especially when you've got to go to a different hospital!!

My ds was the same with a limited diet, the operation really helped this.
The best of luck with it all, just aim to get as much as you can out of your ds being under anaesthetic - it's an opportunity to get the dentist and allergy testing and glue ear throughly checked. All extremely trying things to do even as they get older.
Let us know how you've got on. And with the diet- if milks a favourite use that to your advantage, add in the finest bit of weetabix and milk and a sprinkle of brown sugar (literally 3 teaspoons worth with a literal sprinkling of weetabix so it's nearly noticeable) and work from there. I also did the same with oats and butter and tons of milk with a sprinkling of sugar to start with as my ds was very sensitive to any lumps in food for years and still now at 6.5. Use the 2-3 foods he does eat to try and extend his diet-
I know how hard and trying this really is.

Sorry not 3 teaspoons of sugar I meant 3 teaspoons overall so its it a huge amount and one teaspoon for ds to lick as a first off is enough.

If only he'd let a spoon near his mouth!!!! He hates spoons and ever since he has started finger feeding himself (just a few months ago), he will only let me put food bite by bite on a plate infront of him and if I put more than one bite then he throws both on the floor. Most of the time I end up sweeping up half the meal off the floor. Just now, I've offered him all his usual stuff and some of his occasional stuff and he didn't eat a single bite.....just crying and throwing and more crying....thats the way its becoming more and more each day when he skips atleast one meal a day this way....I just hope that this operation does the miracle I'm reading everywhere and he stops resisting food....:(:(

I went through this. I ended up leaving plates of food everywhere - by the TV, upstairs on a radiator, on the table (with just a bite) and turned away. Never saying eat just elvaing it there and walking away. I also experimented and buttered crackers, squares of bread and just left them on the kitchen counter happily chomping away (when I got the chance) and saying "yum yum" - never looking at ds and walking away.
I always found I had to feed offer food every 2 hours or he would almost become angrier because he was past the point of hunger so I never followed "3 meals a day". More like 5 or 6 plate offerings. Breaking things like buttered crackers and breadsticks makes them much more "approachable" for my ds. Even now at 6.5 he is becoming verbal and always says "break it" when he sees a cracker/biscuit.
That said I had the most battles when ds was 3 before the op as he literally got tonsillitis every 8 weeks, so that must've made food painful to get down. Coupled with your ds and his sleep - cue grumpiness dinner times always going to be a struggle. Be kind to yourself. When ds threw his bite sized favourites I actually popped them in my
Mouth and said "delicious". You should've seen his face- the rage!

Does your ds like any characters/:cartoons? I used to get the spoons from the Disney store with ds favourite characters on them and left them on the plate. Not to use, just to become a bit more desensitised to them. I also got a bubble machine in the garden and popped bubbles with a regular fork, again, just to desensitise the whole "cutlery" scariness.

Sorry I'm just trying to see if I can help. I also did lots of driving with ds in the front seat next to me in a booster type seat whe he was age ready (about 3.5 I think)and regularly used to drive through mcdonalds and plonk some fries in my lap with a tissue down (picnic on my lap) - never on dss initially, and scoffed the chips, making a right song and dance about how delicious they were etc etc. I never offered one to ds till I thought he looked relaxed about it and started with "picnic on the lap tissue". It really helped for ds to see me eating in a safe environment like a car with no pressure on him when he was also quite hungry. Coupled with the fact I was giving off any signals to "share" or "eat" stared to take the pressure off eating as such.

Oh what great ideas Lesley25...I'm going to try all of them!!! Fingers crossed :)

Great to know that your ds is becoming verbal now....gives me hope that mine will be too one day :)

Now just waiting for notification for pre-op and op dates. Will update once its done

My daughter had her tonsils out at 3 1/2. She now has an ASD diagnosis but didn't then. I rang the ward once we had a date and spoke to them, they were very helpful. They are used to dealing with children with all sorts of difficulties, because it's usually done as part of the normal children's ward. It sounds like it's very necessary for him to have this done...they really wouldn't do it if it wasn't.