Autistic 13 year old disimpaction help

[autisticteen]

My autistic son is 13 with his worse problems being related to sensory issues which keep him from eating a healthy diet/having a variety of foods due to texture/taste issues. Long story short, looking back he's probably been chronically constipated for years, normally having a stool every 2-3 days but never complaining about much discomfort. Six weeks ago he got the flu and was knocked out flat on his back for over a week. He went back to school and within a few days had horrible stomach pains coming home almost everyday. This went on for a week or so, I finally took him to a GP who said he was probably backed up from being reclined for so long. He will not take any of the medicines they recommended due to taste/texture. Eventually he refused to go to school. I've taken him to other GPs and ERs because his pain got so bad but they had little help/answers. One ER trip they found a medicine osmolax which is a macrogol that's completely tasteless that he will drink. We tried that at the doses they recommended for 10 days with little success--took him back and they recommended trying an disimpaction scheme from the ERIC website with a high dose of osmolax. We are on day 8 and it's mostly liquid but not completely. He still has stomach pain (much better than it was though) especially after eating. He still wants to lay around and it's difficult to get him to drink a lot of extra water after drinking 5 cups of medicine all day.

I guess I want to know how much like liquid his stool needs to be to stop (it sounds like explosive diarrhoea) and if he should still be having this much stomach pain if he was disimpacted? This is all been going on for so long and we are both exhausted and I just want him to stop being in pain. Thank you for any advice/help you can provide.

[MunchieMum]

Hi, I believe like brown water, for 24 hours. Have you rung the ERIC helpline to chat to a nurse?

[autisticteen in reply to MunchieMum]

Thank you for replying-- I'm in Australia so not sure I can call the helpline?Day 10 and still not brown water, and still occasionally a lot of tearful pain. If I take him back to the ER they will probably have to do a nasogastral tube for stronger medicine and I'm worried that would be extremely traumatic for him. What's worse? He also seems to be getting depressed, he's been sick and in pain now for so long, he's missed out on basically 6 weeks of school. Sorry for rambling but I'm at a loss for the best thing to do.

[MunchieMum in reply to autisticteen]

I don't see why you couldn't call. It would just be an international call...

[autisticteen in reply to MunchieMum]

I suppose you're right, I will have to figure out the time differences!

[Lambtrack]

Hi, I’ve just read your post and it sounds really tough - I do empathise, we’ve been through similar so I feel his (and your) pain! If helpline is busy, try emailing Eric - it says they can only do call backs in the uk but they can definitely email you some specific advice if you ask them to: eric.org.uk/using-our-call-...

[autisticteen in reply to Lambtrack]

Thank you, I will try that, it has been busy when I tried calling. Perhaps they can email me.

[Lambtrack]

It could be that he’s now cleared out, so you could start to reduce the dose. We’ve been told to reduce by just half a sachet every three days until we get my daughter to a type 4 poo (see Bristol Stool Chart) and then stay on that maintenance dose for six months - but best to check with someone medically qualified as it may be different for your son . Do you have a childrens bowel and bladder service with trained continence nurses over there? X

[autisticteen in reply to Lambtrack]

I don't think he's cleaned out yet as he's not having consistently watery poops--it goes back and forth. Hopefully we are close to the end.

As far as I know we don't have a similar service here.

Thank you so much for your replies!

[Lambtrack in reply to autisticteen]

If you email ERIC, it might be worth asking whether you definitely need to reach the watery/rusty water stage or not? In our case we were advised that she didn’t need to go that far and could stop at the ‘soupy’ stage (well, not stop all meds but start reducing the dose very gradually).. again, might be different for your son but definitely worth asking the question x

[autisticteen in reply to Lambtrack]

Thank you, good thought--I'm not sure how much of his suffering is still due to the backed up poop or large amounts of macrogol.

[ERIC-Charity Partner]

Hi autisticteen,

Just popping in to recommend our nurse's podcast episode explaining what to do when your child needs help to reach the end of disimpaction - eric.org.uk/episode-6-disim....

Hope it helps.

ERIC

[autisticteen in reply to ERIC-Charity]

This is an excellent podcast--still not sure how to balance out the extreme pain he's in sometimes but we will keep going until he's got watery poop or he just can't take it anymore. (then we'll try a maintenance dose which won't be as hard for him to take I hope)

[ERIC-Charity Partner]

You are welcome! We would always recommend to stay in touch with your doctor if the pain is unmanageable.

The benefits of a full disimpaction are many - if you were to disimpact fully and the pain stops, you have solved the problem! But if you disimpact fully AND the pain continues then that would be a very good piece of medical information telling you the pain is not being caused by a poo traffic jam, and the prompt for doctors to start investigating for other causes. We appreciate its super tough for everyone when your child is in pain so lots of hugs to you and please remember......it does pass, and it will get better :).

@ ERIC

[autisticteen]

Hello all, my son was eventually diagnosed with mesenteric lymphadenitis which is swollen lymph glands around the intestines. He also has a lot of trapped gas in his tummy and intestines probably from drinking so much sprite mixed with the osmolax for so long. He's pooping normally now, but still taking osmolax because he's on oxycodine for the extreme pains he's in. Drs assure me he'll be fine eventually--I hope so!I wanted to say thanks for all the help