Sleep Apnoea, behaviour, toileting

[ZoeHS]

My DD (3, 4 in a few weeks) had surgery to remove her tonsils and adenoids a few weeks ago to treat sleep apnoea. We were hoping it would be a magic bullet and help with her behaviour, toileting and sleep.

She is prone to big meltdowns at home. She can get really upset easily. She sometimes hits us and screams so loudly.

Her toileting journey has been really difficult. She suffers from constipation and is on laxatives. Her toileting was always up and down but in the last 10 months it has reached crisis point. She has so many accidents: about 6-15 wet accidents at nursery and about 10 or less at home. We’ve tried everything: encouraging her, books, stickers, rewards. She has a few poo accidents too sometimes. I’ve managed to get our GP to do a referral for the incontinence team and we’re waiting for that.

She also struggles with her concentration, which is something nursery picked up on when she was about 2. She’ll flit from thing to thing, unless it’s something she’s really interested in and then it’s as if nothing else around her exists.

I wasn’t expecting an immediate change but if anything everything has got worse. She’s having more meltdowns and more accidents.

I was just wondering if anyone whose child had surgery to help sleep apnoea could let me know how long until they saw a change in their child? Did it made a difference? If it didn’t, what did you do next?

I have suspected since she was a baby that she’s not a neurotypical child and now I’m wondering if that’s the reason for her toileting issues etc.

I’m just at a loss about what to do to best her help and now I feel like it wasn’t the sleep apnoea causing these issues, I don’t know what to do next. I’m dreading her starting school next September now and my partner and I feel like shit parents.

OP she sounds a lot like my eldest.

DD has just turned 7. Operation to remove adenoids/tonsils not long before she was 3. Diagnosed by school SENCO (so not "official" yet) as having ADD with ASD traits.

Some aspecta of treating the sleep apnoea were almost immediate. Getting more/better sleep reduced frequency of meltdowns almost immediately as she wasn't chronically over tired any more. But it didn't solve it totally - she had never been well rested enough to develop much resilience, so once she was sleeping she still needed to learn/practice those skills and was behind her peers. But at least we could now work with her on it .

Be patient - these things take time to learn. Think of every meltdown as an opportunity for her to learn to deal with it. Coach her through it - talk about what she is feeling in simple, repetitive language and reflect some of what she is feeling in your tone. Pick a calming technique that works for you - there are hundreds out there. We do "blow the candles out" - pretend each finger is a candle. She's usually calm once that's fine, but if not we do grounding - tell me 3 things you can see, 2you can hear and 1 you can feel. It doesn't matter what techniques you choose as long as you are consistent.

Talk to the school about any issues in advance and what strategies you use/how well they work for you. They want it to be a smooth transition as much as you do!

What is the exact issue with toilet training? OurDD was great with wees, but would withhold poor until constipated and then eventually have an accident. We were told this isvery common for girls with ASD traits. Again, we didn't remotely tackle it until she was well-rested and had adjusted post surgery. Routine and patience were key for us - there were certain books we read to her while she was on the loo before bathtime every other day. To start with, she had a low dose of movicol 6 hours before to make sure it would be easy - GP provided that but only have us enough for a month as he said he couldn't give more without a medical reason for the constipation. Probably took about 3/4 months for the problem to totally go. DD still always takes a book to the loo for a poo, she needs the distraction.

Oh, and bear in mind that removing adenoids changes how food tastes. That can have an effect on all sorts of things, especially in a ND child.

@TinyTeacher Thanks for your reply 😊 I did not know adenoid removal changed your taste. That explains a lot!

We’ve tried lots of strategies to deal with meltdowns. We’ve always talked about emotions and reads lots of books about feelings. I do the breathing techniques with her when she’s calm but trying to implement anything like that when she’s angry just results in more screaming. I know she’s still very little and it’ll come in time and a lot of work but she really struggles to regulate. She can also go a bit “crazy” and hyper and not talk properly, just make babbling noises and ignore us. She’s very different at nursery; she’s really quiet and has only had a few mini meltdowns. She also isn’t ever aggressive towards her friends. She is a really bright child and has amazing language skills, fine motor skills and very observant and inquisitive.

As for her toileting, she sometimes withholds poos but most of the time she simply doesn’t go to the toilet and wets herself. The majority of the time, especially at nursery, she won’t tell anyone she’s wet. She’ll sit in wet pants or pools of wee. If you ask her if she’s wet, she says no even though you can see she is. Sometimes she takes herself off for a wee and she’ll tell us, but after a bad spell of accidents at nursery it’s got worse at home again. If we say “it looks like you need a wee” then we’re met with screaming. We’ve had a meeting with nursery and their SENCO to put an agreed approach together but nothing has worked so far. Considering she is bright and meeting other milestones so far, I am wondering if she has issues with processing and interoceptive processing.

I’m a teacher myself and I know we can talk to the school but I also know realistically it’s 30 children and 2 adults once she starts in reception and she cannot be having so many accidents.

ADHD runs on my partner’s side and I suspect ADHD and autism on my side too so I know it’s highly likely my daughter is too. My partner says she reminds him so much of his sister when she was younger who really struggled until she started medication.

If you don’t mind me asking, how long did it take for your daughter to get picked up by the SENCO?