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

It varies between that behaviour and hiding under the table/behind the curtains or sadly lying down, I can’t bear to see her like this and sick of constantly being on the doctors back

Is she drinking lots and lots of water/squash? Movicol works by drawing water into the digestive system, it only works if there's lots of water available.

www.eric.org.uk/pdf-how-to-use-macrogol-laxatives

Very liquidy poos could be liquid escaping around the hard poo.

My ds has never been as bad as your daughter but his triggers for constipation are: not drinking enough, eating more than 1 small banana a day, not eating enough dried fruit, eating too much wholewheat fibre.

@PragmaticWench This is a private paediatric who specialises in gastro issues, amongst a few other things. I went to her thinking I’d gone to the best.

@UniversalTruth Its hard to get the 8 drinks a day into her aswell as extra liquids tbh, it’s so stressful getting her to drink it all.
She’s not had bananas for months as the doctor said not to

What do you mean about the liquid poo? Sorry it’s all so confusing

If she’s pooing everyday and it’s sloppy, that could just be the overflow and she’s still v impacted- common in chronic constipation.
id look into the coeliacs / allergy a bit more and maybe change drs if they aren’t looking to help further.

I think you need to escalate to a specialist, is there a route to a private pediatric gastroenterologist where you live? Your GP sounds out of their depth

Have you tried completely changing her diet for a week? No dairy, wheat etc, it’s a nightmare to do but then after the week reintroduced one thing every 3-4 days and track what happens. My issues sound very similar to your dd, I had all the tests was told nothing was wrong, I followed an elimination diet and am definitely intolerant to wheat.

I'm sorry you are going through this.

My son has been on laxido for literally about three years and my daughter is now on it too. The Dr seemed to be saying that some childrens bowels are just not mature enough and it was fine to be on the sachets long term. We are now at one sachet a day for both children and the symptoms are totally managed.

However, a couple of months ago they had a shortage of laxido and gave us movicol instead. My son suffered terrible stomach pains and gas on that and we were only one sachet a day, I can't imagine how he would be on 8. Luckily we got laxido back and he's been fine, the pharmacist said it's gentler on their stomach.

Just wanted to raise this in case it's a 'the cure is worse than the disease' scenario.

For myself, magnesium supplements have literally cured my lifelong constipation. So definitely look into this too.

Poor you and your daughter - it sounds very stressful. Just a note to say that a gluten/wheat allergy is not the same as coeliac disease. Coeliac disease is an autoimmune condition and the antibody test is different to that of allergy. May be worth double checking with your doctor.

@mistermagpie I wondered that but she had the tummy aches way before we started on it 🤷🏻‍♀️It’s actually a form of Movicol where we are called Casenlax
Yes, my doctor said she has patients of hers (children) who have been on it for years and it’s safe to take, but this isn’t working is it if its been this long

Try a few fennel seeds after she eats anything. Excellent for clearing the stomach.

@Localher0 Do you know the rest they do for coeliac? She was pretty traumatised bu all the blood tests, she’s too young to be worrying about all this, so worried about any psychological affects too 😢

@Ginandthings I can try that, not sure what to feed her as it basically cuts so much out

I can't digest fibre hardly at all. Had the same-ish symptoms as your daughter. 43 years of misery, solved within 2 days of giving up fruit, veg, and grains.

Given that it worked so quickly, I'd recommend giving it a try to anybody struggling with digestive issues.

I had medical tests for years, and was only ever told that my problems were caused by not eating enough fibre. Still furious with the NHS, years on!

@SeaToSki I'm with a private gastro paediatric 😩

@Jubaju Sorry what do you mean by overflow please? Do you mean her actual poos aren’t coming out? What do I do about this?

@Watchkeys What can you eat though if no fruit or veg, how could I give her enough nutrients if we have to cut that out 😔
So sorry you went through that, feeling so angry at the moment at just being left. The doctor is a lovely person but just doesn’t seem to understand/take this seriously enough. If I send a message saying her tummy’s bad today, her only suggestion is to take her to emergency 🤷🏻‍♀️

@Itneverends77 unfortunately it is another blood test. They look for specific IgG antibodies together with TTG IgA. If the levels are high and therefore positive then it can be double checked against Endomysial Antibodies for a positive/Negative result. The gold standard test is then a biopsy but they don't tend to do those anymore especially with children.

I am able to eat a bit, but I had to seriously tone it down. There's a hell of a lot of nutrients in meat/fish/cheese/eggs. I just ate those to start with, and it was heavenly peaceful in my tummy!

Now it's a bit of a gamble, like having one extra drink at the end of the night; I really want the tomato, but will it be worth it for a mild belly ache tomorrow? Sometimes yes.

It's just good to know what's causing it, and that I can get it under control so quickly.

My comment about liquid poo is what people mean by "overflow". It's when liquid is being passed around the blockage of hard poo. So the hard poo that's causing the pain/bloating is still there.

The link I sent before is really helpful - it explains that the Movicol drinks don't count as hydration so we need to think of how you can get extra water into your DD. I suggest squash if you can get that (cordial might be fine), ice lollies, high water food like cucumber. Juice should be max half a glass but this counts too.

She's probably old enough to understand that you want to try a week of medicine and lots of water to help her tummy pain with a star chart and lots of praise and maybe a toy/treat at the end of every week if she gets enough stars.

I wouldn't try an exclusion diet in a child without dietitian advice.

@Itneverends77 When doing mine I started with just eating fruit, vegetables, fish and lean meat, I only drank water and then after about 3 days I started to see improvements, so I began to reintroduce one different item at a time. It wasn’t actually as bad or as long as I expected it to take, as you can almost group things together I.e if milk is ok then it’s probably not dairy as milk is the base for yogurt, cheese etc. Also I had a sneaking suspicion it was wheat as I was always bloated, had cramps etc. after eating any bread or pasta so I left that til last to try as it gave my body longer to heal.

Also, exercise helps so is there somewhere you can tempt her with eg. park, playground, swimming?

You are doing great btw. This must be very frustrating and upsetting to see your DD like this. You have done everything asked of you to try to help and now are posting here for more advice so please take heart.

I don't understand the Bananas bit, a ripe banana and my DS poops a lot better. I also make sure he has plenty of water to drink even if it's squash. Sounds like perhaps not enough fibre? Maybe try incorporate porridge, Weetabix more and other things, the thing with fibre is rarely it can make it worse especially with high fibre and low water intake, so you need to find out if it's diet.
My DS always gets bunged up if he has a lot of dairy (like me).
Try to get her to eat little and often, unfortunately if she does get too afraid to eat much it may only compound the issue.

@NotMyselfWithoutCoffee The Dr said to eliminate bananas, cereal, carrots & rice 🤷🏻‍♀️

@Localher0 Just checked all her tests, they tested for coeliac negative, it was the lactose one they didn’t do. So she tested negative for milk allergy but they didn’t do a lactose test. She also made her cut out milk for weeks but it made no difference either way.