Bowels - does this sound familiar to anyone?

[Madoldbird]

Hi All

First of all, i need to apologise that i seem to ask questions far more than i post on other threads offering help and suggestions. I am hoping that as time goes on i will have more experience that will allow me to help everyone else!

We have had a bit of a weekend with DS 19m (GDD, probable ASD, as yet undiagnosed chromosomal abnormality). He has always had constipation, and we have noticed that as time goes on, when he gets bunged up even more than usual, he becomes really unwell, very high fever, etc. It usually resolves once he is able to have a poo.

This Saturday, he had been perfectly well and happy, was sat eating his lunch, when he suddenly started fitting. It didn't stop, he was turning blue, so we called an ambulance.Turns out his temp was 39.5, so it was a febrile convulsion. He has had them before, but normally has been obviously unwell beforehand. After a few hours in A&E they said it was an infection, though they weren't sure where, and sent us home.

He was brighter during the day yesterday, but last night was hotter than ever, and was vomiting so he couldn't even keep calpol or neurofen down. This morning, brighter again, although he is clearly trying to poo and in a lot of pain.

He is currently on lactulose, but some people have suggested that movicol might be better.I had discussed the issue of an infection whilst constipated with the comm paed, as i was concerned that it is his bowel that gets infected. She said that it is more likely that the impacted bowel is pressing on his bladder leading to a UTI. She has suggested that we ask the GP for a referral to the local bowel specialist who apparently sees all the constipated children in our area.

So i was just wondering if this rings any bells for anyone, and if anyone has any thoughts or experiences that you feel able to share. I was particularly wondering if anyone has experienced this repeated cycle of infections coinciding with periods of particularly bad constipation.

TIA.

Sorry you had a hospital trip. No experience of utis but ime of impaction it is v plausible for the stored up poo to press down on the bladder. So yes defo pursue specialist referal with gp asap

I had a big problem with my older son which sounds a lot similar. It was resolved by time, and a very good doctor at St Thomas's, London.

Look up "Hirschsprung's disease or Hirschsprung's syndrome" = my son had a mild variant of this. It means that some of the nerve endings in the lower bowel are missing so the child doesn't poo normally and huge amounts of soft poo build up in the bowel. It's usually treated as constipation at first, but it isn't - it's something rather different.

The tactics used by the local hospital actually made things worse - laxatives, enemas. I may be completely off-beam, but it might be worth having a look.

yes ive one DS who is ASD and regularly gets constipated i used to when he was little use lactulose but he would have to have such large ammounts now (10) he goes even now through spells like this but ive found fresh orange juice (small glass once a day) stops it i know the second he doesnt have his oj hes consipated once again, he used to not go for up to 5 days but now i use movicol , id def seek the referal my other DS used to get repeated UTI infections as he would wait all day till bedtime before going to the loo he kept getting temperatures and having antibiotics then one day he woke up and his penis balloned off to one side and just could not pee at all he was in agont the hosp just put him on more antibiotcs which didnt work and put him on waiting list for a circumsision... it kept comming and going and he was off school a lot so i was lucky i could aford to go private where he had the op 2 days after seeing the specialist god only knows bless him what would have happened on the 6 month waiting list he was on, so i guess im just saying yes deffinately ask to be refered and ask about the movicol in meantime and any other ideas they may have , hope he feels better soon n try not to worry as it will get better

Sorry your ds having a bad time. my ds age 10 severe autism gdd has a lot of bowel problems. tried lactulose which didnt make much difference. few years back was in & out hospital constant screaming and going rigid with pain, though he never convulsed. hospital used picolax (which is like enema). found out he was dairy intolerant which was adding to pain as he was drinking lots of milk. these days i am careful with his diet (dairy free) and although he gets constipated a lot movicol works for him now. Would definetely take up offer of referral to bowel specialist. hope he feels better soon.

Wow Madoldbird, you are virtually describing the problems we have been having with my DS since the start of the year!! He has just got over his 3rd episode of abdo pain and high temps, although thankfully there was no vomiting this time!!
My ds is 3.10 and has ASD, has always been constipated but started having problems with it last summer.
We ended up in A+E on Thursday night as he had not passed urine for over 24 hours, they were about to catheterise him when he got on all fours and filled his nappy to the point it was overflowing and he had had his bowels opened. He has been on movicol for 6 months now but getting it in him is nigh on impossible, he was prescribed docusate last week but I have been unable to get as much as one dose in him!

I would get a referral asap and ask your gp for a bowel stimulant as well as softener (lactulose is a softener). :)

Thanks all. Will defintely ask for the referral.Will also try movicol. Interesting (although sad) to hear other children experiencing similar difficulties.

writehand i will go off and google that, thanks.

DD1 was terrible for this and would end up with overflow! she was on movical and surposties :(
We never got far with paed tbh and she always got a temperture with no other signs of illness. This all sorted itself when she was about 5years old.

Dd2 gets poorly with it too , she often gets a high temp and almost turns a greeny blue colour, as soon as she has been she perks up. Luckily we seem to have it under control now with her diet. Dd1 is always contapated and because she's such a fussy eater i can't get her to change her diet.