Aspergers kids with other medical issues/surgeries

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My 6yo son who has Aspergers, also was born with a cleft lip and palate. he has had numerous surgeries, procedured and therapies related to his cleft. Most of those were when he was much younger and didnt understand and was too young to remember. Now he is old enough to know and remember his last surgery which was last summer. In the near future, he will need a bone graft in his jaw, palate expander, dental implants, etc..all of which are not comfortable for kids who have NO issues, let alone a child with Aspergers.

I was wondering how you explain procedures and surgeries so they dont get overwhelmed/anxious,etc..and how do you deal with the recovery period when they are in pain or have restriced activities/diets, etc... last year he was on a liquid/soft diet for about 6 week. It was a nightmare, as I assume it would be for any kid. The bone graft in his jaw will require months of restricted diet, and he is so picky to begin with, I cant imagine months of restrictions. my son has issues regulating emotions, anxiety, delayed gratification...

Any input would be greatly appreciated.

Social stories help many kids with ASD deal with things like that. Are you familiar with them?

MMJMOM, we haven't had any major medical issues, but when DS had his tonsils out, I searched YouTube for videos about tonsillectomies. I think we found some videos about hospitals on the Sesame Street site with Elmo, and there were a surprising number of resources to prepare kids online.

I would also tell your doctor that your child has AS and ask if they could do a "dry run" where they show him where he goes, when, where he'll be when he wakes up, and all the stuff they need to do. I think most Children's Hospitals offer something of that nature, just let them know it will need to be a little more specific. I do remember DS was pretty scared by the lights in the surgery, but he'd been prepared for the anesthesia, so that calmed him, and then he was out.

What he wasn't (and we weren't) prepared for: the recovery outside the hospital, after the major intravenous drugs wore off. He was busy eating ice cream and smiling at the hospital, but once we got home - since his pain meter is stuck at 11 - the next week was horrendous: the drugs had to be swallowed, and swallowing hurt, he'd refuse the drugs, the pain would worsen...it was awful. If you're dealing with any kind of oral surgery, ask if they have some alternate way of administering meds: a patch, suppository, something!

I just make sure to have the doctors be aware of the fact I don't expirence pain like a normal person does and something that should bother me won't, but something that shouldn't will. I had a hystorectomy last year and if it wasn't for the stupid urinary cathader, I wouldn't have had any pain at all afterwards. The cather was litteraly poking me on the inside (I assume it was put in carelessly) and so painful my pulse was so high they thought I was having a heart attack. The wouldn't take it out either until my mom yelled at them about how bad it was hurting me and if they didn't take it out I would take it out myself. If I ever have to have another surgery or procedure where anything is put in me there, I'm refusing to have it done. I will die of a ruptured apendix or spleen before I let something poke me in the bladder. A ruptured internal organ probably wouldn't even be as painful to me as it would be to a normal person.

thanks all. I guess I am more worried about the recovery, as he will be out for the actual procedures.

Well, my son doesn't have anything serious enough to need surgery. He had severe GERD since birth, and still does sometimes, but he handles it pretty well now considering.

We are having to undergo an EEG on Monday--they will first do an EKG, then they will do an awake EEG and then put him to sleep for a sleeping EEG. Given the fact that he has to fast for 12 hours in advance, and that it takes an hour to attach sticky electrodes to his head, and he is HIGHLY sensitive to head touch, I am very nervous about how he is going to do with the procedure. And all this on an VERY empty tummy and not even allowed to drink water. I am expecting hell, but hoping for the best. Maybe going to sneak him a hard candy or two to help. Also, he's obsessed with LEGO, so I'm going to buy a couple small new lego sets for him to open/put together while waiting. (There's also a social story/EEG explanation that someone linked to that should help prep him.)

I think having some special treats like that for your son during recovery might really help. I have two brothers who had Asperger/ADHD traits as kids, and one thing my mom did to survive family trips was the promise of a special gift/treat every day at 12. However, if they super misbehaved, the time got knocked back an hour. Maybe you don't want to knock his time back since the poor kiddo will be in recovery. But maybe the looking forward to a surprise every day at a certain time will help him be positive and excited about something during the day? Something special he really likes?

I'll probably be on to post how Monday goes and mention anything that ended up helping/working! It takes him an hour to 'come out' of anesthesia, and he's going to be groggy, hungry . . . yikes.

Dd(10) has AS with GAD, and Cystic Fibrosis. She's been in and out of the hospital and having surgeries since she was four months old. As she's gotten older I've found the biggest help has been to over-prepare her. We start about a week ahead of time and discuss it daily.

Example: We're going to the hospital and you'll put your gown on. They'll take you to the operating room and you'll get to pick a flavor to breath in the anesthetic. The Drs will do their work and when you wake up you'll be in a different room with a nurse. When you start to wake up, they'll call me, and I'll be with you too. You'll probably feel groggy from the anesthesia, and your chest might hurt where they put the port. If you're in pain you just need to tell me or the nurse and we'll get it taken care of. You'll probably be thirsty and hungry, and as soon as the nurse thinks it's okay you can have something to drink, maybe sprite or some water, or a popsicle...etc.

It may seem very simple (dd has a high school reading level), but I've found when I keep it simple, she doesn't get bogged down in the details and anxiety. I think just knowing what to expect is the biggest thing. Hope this helps!

Ok, so found out that he will need another Video Nasalendoscopy next week, and then his bone graft surgery in a few months. I am DREADING explaining all this to him. He hadthe endoscopy once and it was horrible. He has to be awake and able to talk thru it, so all they do is spray numbing spray in his nose and throat, and then the long endoscope has to be threaded up his nostril into this palate area. he then has to speak, repeat what the therapists tell him to. he was 4 1/2 last time,and he flipped, Ihad to hold him down,it was horrible. He is so muchbiggernow I am dreading this.

The surgery will require a 4-5 day hosp stay,harvestingthe bone from his hip and grafting it into his jaw. he will be on a special diet for many months. I just dont know how he will handle all this...

I have nothi g constructive to offer - other than I'm feeling for both of you!