Trapped gas-can’t do this anymore

[Itneverends77]

Dd is almost 4, she’s had stomach pains since January. We’ve been to the doctors and hospital numerous times, she’s had various blood and urine tests-all negative.
Two eco scans have showed gas and one x ray has shown she’s impacted with poo and air.
We've been disimpacting with 8 sachets a day of Movicol for almost 9 weeks and started pico drops last week. Nothing has changed. Her behaviour has completely changed, she’s currently running around, shouting, tormenting the dog, she jumps around, throws things, sometimes hits me.
She has tummy ache from when she wakes, and on and off all day.
I feel like I’ve lost my little girl, so frustrating and upset to see her in pain everyday and not be able to help her, feeling so exhausted dealing with her behaviour, we can barely attend friends parties or play dates anymore, it’s impacted our life.
She’s due to start school in September, but I don’t see how she can, she’ll disrupt the class and teachers with her behaviour, when it’s not her fault, others would see her a just a *Naughty girl, but she really isn’t.
We’ve tried stomach massages, hot water bottles, gas drops, paracetamol medicine…nothing works.
I feel like the doctor has just sort of come to the end with it and really can’t offer me any more advice now…feeling quite desperate.
Has anyone been through similar, at my wits end

If this started after a difficult emotional period then I’d consider the possibility of encopresis, rather than a strictly medical diagnosis like a structural issue or allergy. I also wonder if the hyperactivity is largely unrelated to the issue.
My eldest had encopresis and it was hell. Fairly similar to what you were describing. All the movicol actually made it a lot worse. We ended up having to use behavioural therapy and a lot of CBT

Have you looked at the side effects of taking Movicol? Abdominal pain, bloating, diarrhoea, flatulence. The doctor seems to be letting down your little girl 😞 they should definitely be investigating, especially as she’s losing weight.

www.bing.com/videos/search?q=youtube+abdominal+massage+for+constipation&view=detail&mid=691EA9BC2B802D6E7994691EA9BC2B802D6E7994&FORM=VIRE

My ds has crohns, only diagnosed a couple of years ago at 10 but he was constipated alot, but when he did go they were large volumes, runny and very smelly. I kept on at the drs for years as I was convinced he was celiac but the bloods were negative.
I took him back a few times as I was concerned about how small and underweight he seemed to his peers and he always had a swollen tummy. A locum dr decided to do a stool sample and the calprotectin levels were really high. He was referred to gastro and diagnosed with crohns.
He used to have accidents even after being potty trained and when he had tummyache it seemed to affect his behaviour, the stomach and brain are closely linked I am told.
When he has tummyache though buscapan can really help, although you have to be careful not to give it too often as it can lead to constipation. Also not sure what age this can be given.

My advice would be to ask for stool samples. Ask for calprotectin to be included and ask for a referal to gastro, its not nice for them to be constipated.
I really hope you get some answers soon and your dc gets some relief soon.

The stool chart will help you figure out if it is diarrhoea or overflow.

@endofagain We do the massages and it does help a little.

What is the size, colour and consistency of the poo? Do you have a Bristol stool chart? If not, you can download one from either the poo nurses or ERIC website.

I need to head off to sleep now, but do look at all the info tomorrow. Good luck.

@Glitternails1 I know, but those were the symptoms without Movicol and she’s given it to attempt to disimpact…I don’t know, it’s all so difficult, just want someone to help and give us an answer

OP... she could be having a reaction to the movicol. As in, the ingredients could be affecting her behaviour. A quick google shows this is pretty common.

Has her behaviour escalated since she was started on it?

Ask for an alternative product, dietician referall or glycerine suppositories instead.

@endofagain Ive got the chart. It really varies tbh. She’s had some days midway through -week 4/5 maybe of awful very dark, v smelly poo, some harder, small poos at first, lighter ones and lots of days of liquid but sloppy, splattered poo

As an fyi OP, movicol is also shown to cause incrased agression problems particularly in older males (60+). But can seemingly affect others too.

@MiniPiccolo Ive read about that and did wonder, but she also had that behaviour before the Movicol, all the behaviour started when she must have been impacted and I didn’t know. It’s mainly gas that hurts her as when we massage and sometimes are able to get it out, she’s much better,

Increased* sorry. New phone!

But it could be the movicol sustaining the behaviour - it's also shown to make gas and abdominal pain worse. If the impaction has cleared you should be tapering off and focussing on diet and seeking a dietician referral.

@Catclown Thanks so much, she under gastro care and had the prolactina and poo tests near the start-all negative, they tested for worms etc too 😬all ok

@MiniPiccolo This is the thing though, we don’t know if it’s cleared yet? The dr isn’t able to tell me and by following Eric guidelines etc on disimpacting, it says 3 days of liquid with no poo is needed, it’s so hard to know what to do

The Dr should be able to tell you. You need to seek better care if they can't. It's their job.

@4timesthefun What behaviour did your dc show? How did Movicol make it worse?
I’m not sure about the hyperactivity as it always starts when I can see she has tummy ache and she tells me. She didn’t have it before, only when little and overtired. It feels so long since we’ve had a day of her for the full day just properly calm and her old self.
She doesn’t have accidents or soil herself so I’m not sure?

@MiniPiccolo She said to continue the Movicol until it gets better. I think she’s not sure what to do? When I messaged her again today, she’s referred us to another specialist in the one of the capitals hospitals in a few weeks.

Don't know whether sb's said this, please ignore if sb has, OP there's a difference between an allergy and an intolerance. I'm not allergic to dairy but I'm highly intolerant to it. Allergy tests all came back clear but there aren't any for intolerances, they're about trying this or that and seeing how you feel. It took me moooonths of tests and labs for everything and more, and in the end I found out dairy's to blame by accident. My biggest problem was that it often took a few days for me to get sick after drinking milk, it wasn't immediate.
If the doctor's stumped, work with a nutritionist to do an elimination diet to see if you can get somewhere. You need a proper professional to help you because your DD's very young. Good luck OP!
(Ridiculous question but have you seen a gastro expert?)

Poor lass.

She definitely needs more investigating.

Gastro team but also motility specialist, it could be the muscles of her bowel that do not work properly. This in turn can cause psuedo or real obstructions, add into the mix SIBO, which is an overgrowth of bacteria in the small bowel, there may be many things going on.

Once it goes out of sync everything hurts, the gas, an impaction, maybe infection. The overflow with runny poo seems to me she is constipated.

If she has had major tests and nothing is found I think adjusting her diet in the short term may help, no red meat (too hard to digest) no insoluble fibre, small ammounts of soluble fibre cooked very well. Keep off the citrus fruits.
No seeds or pulses, in case of diverticulitus or inflamation pockets.

Childrens probiotics, they do chocolate coated ones for children.
The motility doctors are excellent who specialize in constipation. Bland food nothing too spicy, cut out as many preservatives as poss. Yoghurts for me were ok, especially the forticips if she's not getting the right vitamins (don't know if all children can have these)

Mine was related to a metabolic disease which affected the muscles of the bowel and gave me gastroparesis, which is paralysis of the bowel.

Obviously dietry advice should be ok'd with your docs and dieticians but she really needs futher tests and these are only suggestions as your daughter will be unique with her symptoms

I wouldn't give her fybogel or anything that creates gas, unbearably painfull.

Yes definitely.

blockages can make the breath smell very badly as well.

Was your daughter on any anti biotics last year before she started suffering ?

Hi OP this sounds really hard. Are you sure doc is advising against the procedure because it is unpleasant, or maybe just because it is more expensive than movicol? I'd think it's better to have a time-limited nasty procedure over this constant discomfort.

You've probably heard it all before but linseed and psyllium seed - whole seeds, not just the husks, available from German suppliers under the name of 'Flohsamen' - work wonders for me, especially combined with buttermilk.