Children with allergies / gastro problems / asthma

[InTheDollsHouse]

Just wanted to update and @aggytha say again, maybe that hospital option would be good.
This disimpaction has been a nightmare. It’s horrible, everyone is miserable, it’s not even working as it should. We’ve had weeks now of pain, trauma, tears. LO seems to think every drink is poison, is reluctant to eat because they don’t want to ‘create’ poo, will barely wee in case a poo comes out. It’s made the problem 100x worse. Sleep is disrupted, we can’t go anywhere or have to come home if we do, they’ve missed nursery and activities and their behaviour is all over the shop.
They’ve been potty trained for as long as I remember now but after initial reluctance, is now asking for a nappy which we’re allowing due to leaks/risk of an accident (they’re not actively going in it but it can’t be good).
We’re now on to the next stage of a bowel stimulant but that’s not even working yet.

New baby is coming in 8 weeks latest and we’re in a position of being back to on and off co-sleeping and nappies, I even got a kick to the tummy earlier. We want to enjoy our time but can’t and my heart breaks because getting ‘serious’ is the only way to get them to even sit on the potty for more than a moment to wee. “Mummy’s angry” or “Mummy please smile”
And it’s not that they’re ‘naughty’, they’re scared and I’m doing the opposite of what you’d naturally want to do.

At least before we’d have a few good days, a few not so good then 1 or 2 really bad. At the moment it’s all bad. If there was another way, I’d 100% take it.

(I don’t mean that to be self pitying, it’s them I’m worried for but we are completely at a loss and scared of long term implications)

That sounds so hard, for all of you. I’m so sorry you - and they - are having to go through this

 

[InTheDollsHouse]

Thank you! I had a feeling the cheese would be horrible

Thank you for all the recommendations I will add them to my shop. I shop at Tesco but happy to go anywhere else that has better options! Consultant wants me cut soya too and when I looked at yoghurts earlier I noticed a lot of them had soya in them! Xx

All Tesco finest bread is soya-free.
Also Jackson’s bread but I think I’ve only seen it in Sainsbury’s.

Tesco bourbons are safe - they have to be the pack of bourbons only, not the mixed pack with other biscuits in as they aren’t okay.

Check crisps. Skips are safe, ready salted and salt and vinegar hoola hoops too but not the beef ones.

It feels overwhelming but it does get easier. If you want ideas for any more specific things just shout. I was dairy, soya and egg free for three years while breastfeeding so I tried a lot of substitutions My youngest is still free from those three and also gluten.

(I haven’t checked things like bread and biscuits in two years as he’s been gluten free so please double check yourself)

 

[InTheDollsHouse]

4! My god you are wonder woman. It’s challenging enough getting 1.5ml of medicine in mine! They won’t drink squash, juice, fizzy, anything! Only water and soya milk it’s great you’re managing to disguise it and of course you want to do as much as you possibly can to help your LO, but the at home disimpaction and maintenance really does feel like a huge commitment and big ask for everyone involved, doesn’t it?!

We’ve also got the huge distress and pain/upset and knock on effect of disturbed sleep, up and down appetite and behaviour. It’s really is making them miserable and it’s so upsetting to see. I just hate the thought of how traumatic a hospital admission could be, but it feels like we’ve tried everything and I am just so so desperate for a resolution now.

There’s so much distress tied up in this kind of thing. We had bloods done at hospital, he remembers that but he also remembers the game he was allowed to play on the iPad with the play specialist. Sometimes, as parents, we have to (try to) trust the professionals to do the right thing. Because in the end, it will be for the best x

 

[InTheDollsHouse]

Oh @littlepup that is the best news

 

[Sooks31]

So glad I found this thread! My little girl will be two next month. We have been on cosmocol for probably A year I would say. Prior to this she always struggled to poo. Always seemed to be in pain in her stomach. Arched her back a lot as a baby etc. we started on 8!! Sachets to clear impaction, now she is meant to have 3 a day. 3 a day causes up to 10 liquid poos a day. Yesterday I gave her 1 sachet and even today she has done 5 poos! I can’t find the balance. I alternate 1 sachet one day, 2 the next. 3 is too many. She’s had blood tests and found out this week she isn’t a coeliac, the consultant wanted to wait 3 months to see her again but I said I wasn’t willing to wait because it’s not fair how she is at the moment. We’ve got an appt in 2 weeks. I don’t really know where to go from here I don’t want to keep plying her with laxatives. I will never be able to potty train her if her bowels stay like this! Thanks for getting this far

Edited to add.. that even on consistent laxatives she doesn’t go to the toilet every day. And some days she has several attempts of straining before she even poos a tiny bit

 

[Sooks31]

Not at this point. I am going to ask when I go in two weeks. The consultant seems to think it’s just constipation. But I’m not convinced!

 

[littlepup]

I think so? I kept her on her normal diet. So everything she’s been eating since I’ve weaned her. I’m not convinced she’s a coeliac, even though her symptoms point to it. But don’t know whether to push for other allergy tests? She doesn’t drink any milk now. And I’m wondering if she refuses it because she knows she gets tummy ache?!

Have they ever suggested an elimination diet? Or suspected CMPA (and soya allergy)?

 

[Sooks31]

Thank you! Didn’t know that. So will ask next week x

 

[littlepup]

We’ve also got the huge distress and pain/upset and knock on effect of disturbed sleep, up and down appetite and behaviour.

Oh that sounds so hard. Mine will drink a variety but it’s a constant battle to get any kind of quantity in, constantly reminding and allowing sweet tasting drinks just to get it in because they’ve zero inclination for water.

Oh God yes, the appetite. When they’ve not been for getting on a week they’ll gradually stop eating anything really, like they’re just too full. They start to look malnourished with a pot belly. I’ll let them have very calorie dense treats, because I want them to have something at least, which is an unhealthy habit in the long run.
The behaviour changes here too, the second they go it’s like a different child.
This is the plan we’re following but with adult dosage so they can drink less for the same effect. You’re house bound pretty much for the duration. Goodness knows how we’ll find the maintainance dose.

A parent's guide to disimpaction - ERIC

Step by step instructions on how to correctly use macrogol laxatives to treat children who are chronically constipated. A disimpaction regime uses laxatives in large quantities to clear out accumulated poo.

eric.org.uk

We were also given syringes of a numbing anesthetic to be applied internally due to the withholding from fear of pain. (11ml of a gel each time) but have managed without so far.

 

[InTheDollsHouse]

Another awful day here.
I’m starting to think their system just isn’t working, like they’ve forgotten how or can’t use the muscles to go.
We were going to go to a&e because of the pain which they didn’t want to do, so hysterically, “I can go, I can go” and I believe trying but it wouldn’t come for over 1.5hrs and when it did (after pretty much forcing the numbing gel) it wasn’t all it should have been. This is after strong doses of Senna aren’t doing anything but seemingly causing cramps too.
We had a couple of hours where they felt relieved then back to discomfort, wanting to lay down, not wanting to wee.

We’ll see what tomorrow brings with the strongest dose of Senna yet.

That sounds awful. I’m so sorry. When they reach that stage they are so distraught that it’s a case of minimising trauma while having to do what you have to do

I’m sure you’ve done all this but can you sneak fluids in? Watermelon, jelly, ice pops?

Really hope today is a little better. Remember that you’re doing your best for them xx
---

Yeah that’s what I was thinking!

No we haven’t. And the girl LOVES cheese, yoghurts & ice cream she doesn’t drink any milk anymore ( did try soya for a little while) so I guess almond for cereal? X

Okay so avoid rice milk as it's not okay for under 5’s due to arsenic content.
Oatly Barista is the fave here, but almond milk is also good (that’s what I use for coffee and cereal) and there’s a Chocolate Oatly which is amazing.

Cheese - avoid at all costs! It is grim. The one that is okay is the vegan Applewood, it tastes nice as it is, and it melts well for toasties etc.
https://www.tesco.com/groceries/en-GB/products/305836512

Yoghurts are tricky as so many are soya. There are lots of coconut based ones but we can’t have them. There are almond-based Petit Filous which are good if you can find them, it’s a bit like trying to find a unicorn
https://www.tesco.com/groceries/en-GB/products/308104251

There’s also big pots of Nush which are almond-based too and are nice.

Lots of ice lollies are safe, but make sure you read the ingredients as milk hides bloody everywhere. There are tubs of vegan ice cream available but lots contain soya so again double check.

Soya also hides everywhere, such as in bread as a bulking agent. Where do you shop?
It’s also in a huge amount of vegan chocolate.

Milk can be in random places like chorizo too.
Read every single label.
Any allergens have to be listed to stand out on the ingredients, most places have them in bold but some are italic and it’s easy to miss them.

 

[InTheDollsHouse]

Yes actually, I should say we try not to make hospital scary, but to say you’ll get really sick and have to go to hospital but mummy won’t be able to stay with you, which would scare them. We’ve tried bribing with toys, food treats which goes against me trying to avoid making food an issue, days out etc but sometimes they won’t budge. Positive reward and praise doesn’t do it.
I know threatening not to see people, to be put in a room alone or a ‘mummy’s disappointed’, would probably work but emotional blackmail seems so wrong.

It is SO hard to find that balance. The way I see it, if it has to be done for their wellbeing (which it does) then it’s necessary medical care.
It’s awful to feel like you’re casing them pain or discomfort or worry but flip it - if you DON’T do it, they will still have pain and discomfort and worry.

In this situation I honestly think just do it, quick as possible, loads of reassurance and a simple ‘this is going to make x better so mummy has to do it. I’m sorry, I know you don’t like this, we’ll do it super quick’ or along those lines.

(Delete that spoiler if you want)
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Also I haven’t had to do this sort of medical treatment but wonder if you could try when asleep…?

 

[PillowsofFluff]

We've just been referred to Paeds Gastro for ongoing constipation.. praying it doesn't take too long.
What I really want is just to know if my daughter is impacted or not... ultrasound says no but then they followed up with 'ultrasound isn't reliable for poo' so who knows.
She goes fairly regularly but has constant tummy aches so they are saying to just keep pushing movicol and lactulose.
I hate poo. The last 18 months I have never obsessed over poo so much

 

[littlepup]

will find out more info Monday as she wants to discuss with a colleague but sounds as though it would entail a couple of days in hospital including tubes etc. She said she thinks we are already at the point where a hospital admission would be the next stage (within the next few months) however due to my particular situation she thinks maybe rushing it through so it can be done before the babies arrive would be the best idea.

We’re doing of home disimpaction. 4 sachets today (adult movicol). They are not a total refuser but getting any liquids in is hard. So far OJ, lemonade or smoothies have disguised it but 4!? We’re getting a lot of distress, tummy pain, disturbed sleep. Trying to give them cuddles on the floor while on the potty, they uncharacteristically want carrying and cuddling, at 29 weeks preg it’s not easy, let alone with twins! Plus I hate being the baddie, especially when hormonal and we’ve got all the new baby coming emotional conflict & I just want to protect them from everything.
I totally appreciate the distress your LO will feel from an admission but it’ll probably be distressing either way. If I had the option, given your additional challenges, I think I’d take it.

 

[littlepup]

Has anyone’s child ever been on a medication in tablet form and managed to get them to take it successfully? (4 in July)

We had Senna in tablet form. I had some luck crushing it in chocolate pudding (Cadbury pots of joy) and porridge but it dissolved so quickly it was a sprinkle in and get it down in one go otherwise it went into a rank paste. In the end I just dissolved in hot water and syringed it (it was disgusting) but appreciate that’s probably not an option for you.

 

[Sooks31]

I think a camera yes. Maybe under general anaesthetic due to age?

Have you done no dairy/soya before? Shout if you need any suggestions of subs for anything. Mine has never eaten dairy, soya or egg so I know the good treats

Yeah that’s what I was thinking!

No we haven’t. And the girl LOVES cheese, yoghurts & ice cream she doesn’t drink any milk anymore ( did try soya for a little while) so I guess almond for cereal? X

 

[littlepup]

It is SO hard to find that balance. The way I see it, if it has to be done for their wellbeing (which it does) then it’s necessary medical care.
It’s awful to feel like you’re casing them pain or discomfort or worry but flip it - if you DON’T do it, they will still have pain and discomfort and worry.

In this situation I honestly think just do it, quick as possible, loads of reassurance and a simple ‘this is going to make x better so mummy has to do it. I’m sorry, I know you don’t like this, we’ll do it super quick’ or along those lines.

(Delete that spoiler if you want)
---
Also I haven’t had to do this sort of medical treatment but wonder if you could try when asleep…?

Thank you, it’s so true that it’s probably equally as bad to leave them in pain, either way they’re suffering.
It’s so frustrating when they refuse because they do understand it’ll help but they can’t grasp a few moments of discomfort will save them from hours of it.

In the past they’ve consented to the more invasive stuff because they get desperate so maybe that’s just perseverance with reason and kindness. (I don’t think being asleep would work but have considered it).
And if I resort to being harsh to get them to take the oral treatment but it works, we might not get to the stage that I’m uncomfortable with anyway.

Other mums are crying over vaccinations, I’m all “tough, they need it”, I restrained LO for blood test and don’t rush in if they fall. But when it comes to me being responsible (they want me not OH), I’m desperate not to get it wrong. My mum and OH are old school so it’s good to hear from someone I know is mindful that children have rights but can be pragmatic. Thank you x

 

[InTheDollsHouse]

I wanted to ask something that’s quite sensitive then delete it but I’ll just ask it in a different way. I’ll just reword it.

If a 3 year old won’t take their treatment and you can’t convince them with any nice measures, would you insist if they were in extreme pain? I don't mean physically force, it wouldn't be possible, but use 'if you don't you cant have...' or 'you'll end up in hospital' or whatever scary, threatening type of language until they concede.
My thought is no, it’s damaging/traumatising. Someone else argues they're too young to make the decision, it's medical, they wouldn't consent to an injection either but it has to be done, in their best interest no matter what it takes.

Yes. Absolutely. But honestly a bit like tooth brushing sometimes you have to literally hold them firm and do it.

I don’t know if the idea of hospital is right because it may instil a fear as it’s seen as a ‘bad thing to avoid’ so just in case of future appointments I probably wouldn’t use that one.
And I don’t know at 3 if there’s the understanding to really know that x will feel better if you do y.

But I bribe. Whatever will work. Done it recently as started inhalers and I bribed with Haribo! Before that comics.

Trying not to say some words to protect your LO’s privacy… is it an oral medication / solution that needs to be taken, or a ‘different route’?

 

[aggytha]

Has anyone’s LO ever had a planned hospital admission to “help” as they are running out of options at this point?

 

[InTheDollsHouse]

So glad I found this thread! My little girl will be two next month. We have been on cosmocol for probably A year I would say. Prior to this she always struggled to poo. Always seemed to be in pain in her stomach. Arched her back a lot as a baby etc. we started on 8!! Sachets to clear impaction, now she is meant to have 3 a day. 3 a day causes up to 10 liquid poos a day. Yesterday I gave her 1 sachet and even today she has done 5 poos! I can’t find the balance. I alternate 1 sachet one day, 2 the next. 3 is too many. She’s had blood tests and found out this week she isn’t a coeliac, the consultant wanted to wait 3 months to see her again but I said I wasn’t willing to wait because it’s not fair how she is at the moment. We’ve got an appt in 2 weeks. I don’t really know where to go from here I don’t want to keep plying her with laxatives. I will never be able to potty train her if her bowels stay like this! Thanks for getting this far

Edited to add.. that even on consistent laxatives she doesn’t go to the toilet every day. And some days she has several attempts of straining before she even poos a tiny bit

On the coeliac, was she eating enough gluten for long enough prior to the bloods? 2-3 portions a day for 6 weeks. Sorry if you know this but it seems to often not be mentioned!

 

[littlepup]

Yes. Absolutely. But honestly a bit like tooth brushing sometimes you have to literally hold them firm and do it.

I don’t know if the idea of hospital is right because it may I still a fear as it’s seen as a ‘bad thing to avoid’ so just in case of future appointments I probably wouldn’t use that one.

But I bribe. Whatever will work. Done it recently as started inhalers and I bribed with Haribo!

Trying not to say some words to protect your LO’s privacy… is it an oral medication / solution that needs to be taken?

Yes actually, I should say we try not to make hospital scary, but to say you’ll get really sick and have to go to hospital but mummy won’t be able to stay with you, which would scare them. We’ve tried bribing with toys, food treats which goes against me trying to avoid making food an issue, days out etc but sometimes they won’t budge. Positive reward and praise doesn’t do it.
I know threatening not to see people, to be put in a room alone or a ‘mummy’s disappointed’, would probably work but emotional blackmail seems so wrong.