Extreme tiredness and weakness in nearly 4 year old

[TheSnugScroller]

Hi, this is my first time starting a thread. I am very concerned about my daughter. She is nearly 4 and autistic, non verbal. She has been not herself for quite a number of weeks. Previously she is the type of child who is always running around and getting into things.
We took her to A & E last weak since she was deghidrated. They eventually admitted her into a ward. She was extremely constipated for a long time which I did see a doctor about and gave her medication for which obviously didn't help enough. She had manual evacuation of her stool under GA. She was discharged 24 hours later. She still seems very weak. She's just lying in her cot all day and doesn't want to come out or do anything. She cries when we take her out and she is eating mostly in her cot. If we bring her downstairs she just eats and goes back up to lie down again.
My mind is jumping to all sorts of things, maybe she has cancer?
Just wondering if anyone has any idea what I can do?

Is she drinking a lot?

Did they make sure she was completely disimpacted? Sometimes manual evacuations dont get rid of it all, and needs a couple of gos/more laxatives.

They discharged her with plently laxetives which she is having.

drinking is a struggle with her sometimes. She is autistic and very fussy with her food and drink.

I'm thinking they discharged her from hospital too early. She is still not well in herself.

whats the poo like? Is she going mutiple times a day?

Were you given any advice at discharge such as "if it doesn't improve in X days see your GP/come back?"

If no advice I would take her back to A&E and explain. Take a log with all the details - dates, times, advice/medication given and followed etc. Just be prepared for a long wait. If you want an "official" reason to go to A&E you could call 111 first - I would bet they will advise A&E anyway.

Is she under a paediatrician? Is there a way to make an appointment to see them?

I'm sure it's probably not cancer - but it's not normal for her, so you are definitely right to keep pushing for answers, especially since she can't make herself heard.

Yes I'm especially concerned since she cant talk and tell us whats bothering her. Today and yesterday we've had no poo. On Wednesday she had 3 dirty nappies which was good. She is still passing urine. She is under a peadiactrician I will ask for an appointment with her to plan next steps. I am just fed up as she's been like this for a long time now and my mothers instinct is sayting something is wrong.

When you say plenty of laxatives can I ask just how much? Sounds like she should be on a full disimpaction regime - did they give you info on this? By any chance did they do a blood test in hospital, I ask because my son had one when he was admitted to hospital with severe constipation. He autistic too.

The Eric website and ‘Movicol Mummies’ fb group taught me everything I know about constipation in autism. My medical degree (and my husband’s!) taught us nothing and we didn’t get any info when our son was in hospital either. I really feel for you both xx

10mls lactulose twice a day and 2 senna tablets which I crush and mix with chocolate spread. And I have some glycerol suppositories to use if needed. It is a huge amount and she doesn't always have the full amount. I mix her medicine with different things to try get it down her but she is quite fussy.

She couldn't tolerate the movicol so she has a large dose of lactulose instead.

if shes on that much laxatives she should be properly going, i would take her back. Something doesnt sound right could be a large blockage.

In her X ray it was completely blocked all the way through and could have ruptured. But she had surgery and surely it must be unblocked now? So frustrating. I'm fed up.

Did they say she was fully empty?

No 😔

That’s not really a large dose of lactulose. Before movicol was invented, we commonly had toddlers on 30ml three times a day. And they still didn’t poo. Such a shame that some kids , usually autistic, seem able to taste the movicol whatever you put it in.

I tried it in chocolate milk and apple juice, her favourite drinks. And now she won't touch those drinks even without the medicine in.

what colour was her last poo? Was it dark brown like old poo? Or really fresh light brown?
my ds suffers with constipation its bloody awful, he gets really tired when hes seriously backed up so thats why im thinking they havent got it all.

If you're worried, you go back.
It's ok to return, listen to your instincts.

Don't remember but it smelt quite awful. I think quite dark.

I'd be asking the paediatrician if they've definitely tested for coeliac (blood test initially) and crohns (stool sample initially). Both are slightly linked with autism and both can cause constipation.

Yeah old poo, get her back to a&e and demand they do a ultrasound.

Hi there,
I'm so sorry you're going through this—it sounds really scary and heartbreaking to see your little one so wiped out. As a mum myself, I'd be panicking too. First off, huge kudos for getting her to A&E; that was the right call. Since she's still not bouncing back, maybe chat with her pediatrician soon for a full check-up? Could be something simple like lingering effects from the constipation or just needing more recovery time, but better safe than sorry. Hang in there, you're doing an amazing job. Has anyone suggested gentle play or special foods to tempt her? Sending hugs your way.

Dark and awful smell does sound like old poo. My son would just lie on the sofa all day white as a sheet when he was really impacted with poo.

agree with above that that dose of lactulose is likely not big enough. A typical regime for her age would be working up to 8 sachets of Movicol a day after a few days. I agree it tastes disgusting and it’s hard to get In kids. We make it up with the correct amount of water , then add to orange juice, then syringe it into DS’s mouth whilst he watches TV . Like if you were giving calpol. It takes ages.

It’s typical that these things happen on a Friday evening when limited access to medical care, but I would seek out of hours GP or A&E if I were you. She might need the laxatives via an NG tube if she won’t swallow them

Also , never let anyone fob you off by saying your child isn’t constipated because her tummy is “soft”. Our son was examined by at least ten doctors over seven weeks and everyone thought it was soft , everyone was shocked by what the x Ray showed