Withholding, pain and severe difficulty with oral medication

[Shadowfaze]

Hi, not sure if anyone can help, professionals certainly haven't been able to find a way forward yet. We're at the beginning of our journey with my daughter (7) who is autistic with a PDA profile and severe oral sensory issues. Very restricted diet since birth, but no worries about weight/calories or nutrition so far, eats her few foods in large quantities and has a multivitamin. However, chronic constipation started in August due to a tear/fissure and withholding due to the pain. Our issue is that she cannot tolerate oral medication however hard she tries due to the sensory issues/demand avoidance and we now get a trauma/threat response to attempting either going to the toilet (due to fear of pain) or attempting to take any medication after getting halfway through a disimpaction regime in August. She's never been able to tolerate Calpol, so no pain relief, suppositories are not tolerated due to the pain, have used them once or twice in the past but can't get near her with them now. Ended up having an enema at the hospital with no pain relief last week due to withholding for 11 days - she consented but didn't really understand what was going to happen and was severely distressed, trying to run away from the sensations in her own body. Worked, but made her more sore than ever and now back to square one and starting to resist weeing too. Desperately, have managed to hide small amounts of laxido in her juice, but just about 1 sachet a day, trying to up it, but she can't be made to drink when she isn't thirsty and I don't want to risk detection by increasing the concentration and her stopping drinking completely - she only drinks one type of juice and little sips of water. She still isn't going after 4 days, managing to encourage wees once or twice a day, but starting to resist as she finds it hard to withold the poo when going. The GP said she couldn't prescribe a stimulant laxative in liquid form for under 12s and we have been trying to persevere with swallowing a pill but not been successful and threat response starting to become a problem with this too, so not holding out any hope. Any tips? Have literally worked our way through everything on every website several times....even chocolate Movicol was too salty to her and she won't entertain it in ice-cream for example. Basically if she knows it's in there her brain won't let her do it - fight/flight response ensues straightaway. Not through lack of understanding or trying, of her own volition, she sits for up to half an hour at a time and tries to battle her brain, but ultimately only ends up with one sip/taste. Same for sitting on the toilet. Rewards do not work for her at all, just increases the pressure and escalates her distress. Anyone else been in this situation? Thanks for reading.

[14crosstitch14]

Would she eat/ drink prunes. You could try chia seeds, mixes well in food like, gravy or yogurt. It isn't easy we had and still doing toilet training, useing alexa and plenty fluids. Senacot works well sweetcorn/malt loaf as plenty fibre might work. If she'll eat it. Lactolose is a solution you can not taste and can go in with ceareal/drink, a fidget toy sat on toilet helped calm and keep her occupied. Music if she likes. Alexa helped when she got frustrated/annoyed.

[Lambtrack]

Hi, firstly - I hear you! We’ve been going through something very similar with our 6 (nearly 7) year old daughter. Just briefly, as I’m at work (!) but have you tried different brands of macrogol? Some are more salty tasting than others (we now use Laxido plain or Movicol plain watered down a lot so she can’t really detect it/doesn’t know it’s in there). Or if she’ll drink flavoured drinks (our daughter won’t) could try the citrus flavoured Cosmocol - it tastes like a lemony/orangy squash (again, my daughter won’t go near it but depends what your daughter’s preferences are). Or milk/hot chocolate with a small amount of macrogol?

Also, you mentioned she struggles with pills. Our daughter won’t go near calpol but she can now take half a paracetamol for tummy ache etc.

Not sure any of this will work as they’re all so individual. However, I’d just like to say Thank You because your post has made me understand a whole lot more of what may be going on behind some of my daughter’s behaviours - she’s got traits of autism as yet undiagnosed, but the PDA reference makes a lot of sense - I didn’t know about this but I think you have shed some light on our own situation!!!

Happy to chat further if helpful!

Keep going, you’re doing such a great job with such a tricky situation. If I think of any other ideas or tips I’ll let you know! X

[Shadowfaze in reply to Lambtrack]

Thanks so much for your lovely reply. In amongst the stress of it all, it's nice to hear that explaining our situation may have helped someone else! We have 3 autistic children, two with a PDA profile and I remember that light bulb moment about PDA well - the understanding of your child and way forward with low demand strategies it brings changed our household immeasurably for the better.

Thanks for the tips, now up to 3 sachets a day of Laxido in her juice which should be enough for a maintenance dose, but unfortunately still withholding after 8 days and not getting anywhere with pills - she can do similar sized bits of marshmallow and smarties, but too distressed about what the actual pill will do to take it. GP has been on the hunt for the least revolting liquid stimulant laxative, so picking up some sodium picosulphate today to try putting in her juice to make her go. She can cognitively understand when we verbally tell her that softer poo should be less painful, but her survival brain isn't letting her risk trying to go as it remembers the severe pain of last time. She needs to physically experience a painless poo before she can do it herself I think - this is often the case for her, she needs to see or physically experience something is safe before she can do it - always watches first in new situations. Praying the stimulant works and she can avoid another enema - GP is only giving us 24 hours before referring back to the hospital as her stomach is so distended.

[ERIC-Charity Partner]

Hiya, it sounds like your daughter is having a really hard time with this and of course this reflects on you as a family too. If you would like more advice on this I would advise calling our helpline on tel:[phone] or you may wish to use the contact form. There is also a great charity who have their own helpline: pdasociety.org.uk/ Managing a toileting routine and constipation treatment can be tricky with children with a PDA profile so hopefully they can advise you further on how to encourage medication to be taken. To help you with toilet sits and the routine you may wish to check out our recorded webinar from our parents conference on relaxed toilet sits which can be found here: eric.org.uk/children-with-a...