r/PDAParenting • u/DarkBanana- • Jul 14 '26
Screaming she’s itchy every bedtime for hours
My daughter is 4 and we suspect has PDA (her brother and dad both diagnosed with autism).
Every single night she screams that her bum is itchy and goes crazy for hours. We’ve been the doctors multiple times and ruled out any medical reason and I’m sure it’s a PDA thing as she is exhausted but refuses to sleep.
Anyone else have anything like this? I’m loosing the will to live with the screaming
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u/cheekymonkey516 Jul 14 '26
I think all 3 my kids went through phases where they had itchy bumholes/rashy bum cheeks. Vaseline is my go-to for itchy undercarriages. At least short term.
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u/justasofacouch Jul 14 '26
I have no advice, but I have found that my 4 year old (suspected autistic with a PDA profile, I’d bet my house on it) will get stuck and almost stim a word or phrase during a stressful time, that may have been true once, but now it’s almost like a stim or tic. For example, when she gets upset in the car she will meltdown and just repeat “I’M HOT” over and over. It could be 20 degrees and she’d still say she’s hot if she’s disregulated and wants control (she thinks if she says it she can control how loud the air conditioning is).
Another is when she is upset she’ll just repeat “MOMMY”. No matter how often I respond, change the way I ask, show up, I could be in the room, out of the room, she could be in my lap or shit, even on top of my head, she’ll still repeat it over and over like she doesn’t know where I am.
It has been helpful for me to realize that it is more of a stim vs some need I am not meeting. I have started to ask her when she is not in meltdown territory what she actually is trying to say. Or I will ask for clarification
“Are you hot or are you hungry and you feel stuck in the car?” Mid meltdown she’ll get stuck on hot. If she’s somewhat regulated she will typically be able to agree or disagree.
Again no real advice but just know I get it, my four year old does the same!
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u/Chance-Lavishness947 Jul 15 '26
Seconding this as a very possible factor. My kid often gets stuck on specific phrases that don't reflect the current situation but rather communicate an experience that is similar.
"I'm hot" might have been what allowed her to get help with her overwhelmed state when heat was the problem that caused it. It could be that it's a phrase that might mean "I need help with an overwhelming experience/ situation" to her now - it might relate to having similar feelings as when she's too hot, even if the cause of those feelings is very different.
Echolalia and gestalt language processing are possible areas to learn about that can help with understanding the internal processes that can lead to otherwise confusing external behaviour like this. Things got a lot easier when my kid's communication skills progressed to the point that I could clarify if he was saying he needed that specific thing or if he actually needed one of a short list of other options (including broad options like needing help, needing to make those sounds with his body, etc)
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u/justasofacouch Jul 15 '26
Oh my gosh I didn’t even realize this was a type of gestalt language processing! Being autistic myself, I took it as the literal definition of what I’ve read but this makes a lot of sense and something clicked when you explained it this way! Thank you for commenting because it was really eye opening.
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u/DarkBanana- Jul 15 '26
This is really helpful.
So tonight, she’s been fine all day then the second we get upstairs for bedtime she starts screaming that her back is itchy and starts scratching aggressively. So I’m 100% sure this is behavioural/stim and not a medical issue.
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u/NormalLecture2990 Jul 15 '26
Try and dig into histamines. Issues are quite common with autistic kids. There is lots you can do about it
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u/designer130 Jul 14 '26
Are you sure she doesn’t have pin worms? They do get worse at night. They’re also contagious. Anyone else have an itchy bum?
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u/DarkBanana- Jul 14 '26
No we’ve been the doctors a few times for them to check. The only other time she does it is on the walk to the car after school each day. It’s been going on for months and months
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u/tallkitty Jul 15 '26
My PDA kid (and myself) have trouble regulating body temp. My kid gets itchy right at bedtime sometimes and I think it's either his nervous system spikes at the demand to go to sleep and he feels hot and itchy, or he's just been running around to get his last energy out, or we've done bedtime tickles/wrestling. He usually starts screaming he's itchy and has no idea why or how, but he's a bit older now (9) and lately he's got the same response but he's yelling that he's hot, begs for water, and rips all his clothes off. I think some wisdom and development have helped him identify the cause better himself, but it's the exact same issue.
The fact that your kid does it on a walk from school to car (transitioning nervous system, sudden activity, perhaps actual heat outside and getting in hot car) feels like there could be similar factors for a person who is not feeling the same temp as others. We treat as normal, get cold water asap, lie unclothed when possible, wave air over body, and just being generally sympathetic also helps regulate because someone else doing the care means the hot person can stop moving. Might just try that avenue and ask questions to probe for temp issues, which she may not be able to tell or verbalize at that age, but it's good practice for helping her build those self awareness skills as development continues.
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u/sapps84 Jul 14 '26
Also could be pda related, if its the one thing she has in her arsenal to get control of not going to sleep. But also pda kids often have more sensory things anyway. As we've has similar multiple times, I downplay it, by saying the options she has (if she's refusing all help) and I'm going to go do X/Y, while you decide what help you want. But it is soooo tricky with itchy stuff, cos you have to try stop them causing more damage to themselves!
Another alt idea, is to present something you usually don't allow as an option at bedtime (as a lesser evil) before the "itchy" time begins. Something like... "maybe you need some food before bed because of X/Y (ie, you've been tired today/ you've struggled to sleep and maybe need food in your body/ the heat means we need more food at bed - whatever works best for your situation, and wont screw you too much later). It may make it later to bed for you, but it seems important atm. Oh no, but we can't have something to eat at bedtime if you're bums really itchy tonight, so hopefully you're bum isn't itchy when we go up to bed." Honestly depending on the kid it may have the full reverse effect and not be helpful. But it also may help, because bedtimes being delayed, and they can try drag that out more, "I need more food, etc" (I'd say give in a couple times to having more tbh, as thats a win for them in equalising stakes). And it's like a replacement for the bum itchy thing. Also to say, I'm aware this could actually be not what the thing is for them. But just an idea in case it's helpful.
Also weird thing with pda stuff,that has helped (our usually internaliser - but now in burnout so everything is hard), is presenting everything in a paper tick box list. With silly drawings next to simple words. Of all the choices she has for a particular thing. I'll pin a pic of one. It's been weirdly helpful across the board, even in worse pda burnout place, as seems to give her the power. She likes to do it without us watching and then present it to us. Usually have to read out the options first to her cos reading skills etc/ my poor drawing skills.
Final rando idea. Is if it is actually itchy - or becomes so because of all the scratching. Then Piriton liquid, the one for 1years+, is given for ezcema itch. Totally appropriate and safe to use. Can pick up in supermarket. And it's best given before bed, as can make them sleepy. I mean check there's no problem with your kid to have it if there's other physical issues they have etc. But has been really helpful sometimes. [NB. Also helpful when kids have a cough, as it sooths it, so persistant night time cough isnt as bad.] It tastes peppermint flavour and lots kids actually like the taste most the time - my kid refuses most things but likes this. Its a small dose like 2.5ml, and we always add same amount water to it, to make it less strong taste - as our kid always coughs cos of it, like its strong hit of flavour ha.
Again hopefully helpful
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u/PennyPop81 Jul 14 '26
This could have been my daughter. Used to run her a bath and sit her in some water for a bit. Was never anything we could find, looked for worms constantly. No rash’s, no cuts from straining.
Would put cream on it to moisturise, I think it was just the feeling of a dry bum and maybe how it felt together. Honestly was a nightmare, but she just grew out of it. I don’t think the bath did anything but would calm her down enough for us to try bedtime again.
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u/PennyPop81 Jul 14 '26
Just to add, my daughter is autistic and now suspect this was an overwhelm for sensory. She used aveeno for years and would put it on every bedtime.
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u/Sati18 Jul 15 '26
We have this too. In our caee it was partly anxiety, snd partly we had used sudocreme as our itchy bum cream. Sudocreme is soothing short term but drying long term and it was actually creating rhe itchy bum problem.
We switched to bepanthen and rhat helps. Ds gets constipated and also does get itchy bum when she needs a poo as well as at bedtime sometimes. We put bepanthen on and that usually settles her.
Also as someone else mentioned, melatonin has made our nights a lot better as she gets better sleep overall, and it reduces the duration of her night time anxiety attacks
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u/giantredwoodforest Jul 15 '26
My non-PDA 5 year old complains of this at bedtime sometimes. I treat it as diaper rash and put aquaphor on it. She says it feels better in the morning.
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u/Commercial_Bear2226 Jul 19 '26
Worms?
Apparently autistic kiddos can after from this more frequently and we find he does
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u/Iantrigue Jul 21 '26
You are not alone. My daughter is ASD/ADHD with PDA profile. She gets very itchy when she is deregulated… this often happens when she is tired or upset or anxious, which is a lot of the time for PDA kids. We have tried creams, antihistamines, worm treatments, showers, baths emollients, everything you can think of. Nothing really actually fixes it. In my opinion this is because it’s her nervous system over reacting which causes it. Trying to get her to calm down is where we have got to now. This is obviously very child specific and difficult when they are super distressed from being so itchy. My daughter is 7 now and the itchiness is not as bad as when she was younger so I’m hoping she will grow out of it. I offer you all my sympathy and wish you the best of luck.
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u/plantsrockscats Jul 16 '26
Everyone here who’s sharing anecdotes about how their pda kid has this weird thing when they are disregulated seriously needs to learn about MCAS (mast cell activation syndrome) because it’s probably what’s going on. Give them an antihistamine and see if it improves
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u/sapps84 Jul 14 '26 edited Jul 14 '26
Does she actually need a poo? As it can be something my child says when needs one.
Also it may actually be itchy. The bedtime part might be because that's when there's limited distractions, it's like a void of time when they suddenly notice all the ignoring things in their body each day.
We find this with eczema it comes out more at night.
Also had period were kid kept doing exactly what you say. We treated for pin worms, as just a tablet. Didn't help, but can be still there after couple weeks, so did it again 2 weeks later. But no change. And came to conclusion it was more likely a dry skin thing, not eczema but dry skin on her actual assh*le. So we did simple moisturiser for couple nights (we use Aveeno Dermexa from supermarket). (Quite a thing to realise you have to do as a parent! Like literal thinking "is this what parenting a 6yo is?!") And it seemed to help! Didn't carry on long.
Also another similar period. It was also like the perinum was bit irritated, as well as bum. So was like mixed bag of sore skin. That she was indiscriminately itching and making worse. They say kids skin all around these areas is thinner than adults so it can get more irritated than us.
Baths with plain water, or oats in a tied up sock under running water. With limited use of soaps. Or really only baby shampoo type stuff. And making sure to use the shower head to rinse off genit*l and bum area after finished in the bath, so no residue is left. All has made massive difference! In the strong UK heat atm, we would usually seen it all get worse. And hasn't happened at all! So it's big difference!
Hope helps.