Children with allergies / gastro problems / asthma

[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.

 

[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

 

[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!

 

[Sooks31]

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?!

 

[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]

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!

 

[InTheDollsHouse]

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!

If you can, try recording when she’s upset / in pain / straining to go so you can show them what you and seeing at home.

Also on coeliac, if the bloods are inconclusive or negative, ask about IgA level as it is possible to have a negative coeliac screen because of IgA deficiency (this should be checked automatically but often the result isn’t given)

Coeliac Screen - South Tees Hospitals NHS Foundation Trust

Description Untreated coeliac disease is characterised by the presence of IgA antibodies to one or more antigens. IgA anti-tissue transglutaminase antibodies are now used as the screening test of choice. All positive samples are then tested for IgA anti-endomysial antibodies. There is a good...

www.southtees.nhs.uk

.

 

[Sooks31]

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

 

[littlepup]

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)

 

[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

 

[aggytha]

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 absolutely horrific for all involved it’s so unfair.

well my update is that I received a phone call from consultant last Monday as scheduled regarding plan going forward: they ended up saying after speaking to colleagues they didn’t feel comfortable doing the hospital option quite yet due to age (3y10m). They explained a 2yo is young enough to not know what is going on and a 5/6 year old you can reason with, but a 3/4yo are likely to find it very traumatic. Which I totally understand, but it’s so frustrating.

Instead they wanted us to up the Picosulfate dosage (she said we wouldn’t be able to achieve full disimpaction with it as it’s obviously not designed for that). We did it very reluctantly as previously we have tried upping the dose and it has caused them to soil themselves completely unknowingly.

Of course sods law is that we upped it from the usual 1.5ml dosage (all we can usually achieve with our medicine refuser!!) slowly up to about 1.9ml over the past 10 days and no movement whatsoever. Lots of complaining of tummy pain “rub my tummy mummy” “it hurts” and lots of sitting on toilet/potty “it won’t come out” and tears.

last night (day 10) I went in to check on them at about 11pm as noticed eyes were open on the monitor but no noise (plus was visibly uncomfortable all day and evening with tummy pain) and they were led there with two massive rock hard poos in their pants. I can only gather it happened whilst sleeping and muscles relaxed?! I have no idea, but it was extremely upsetting. I just feel like absolute tit. Thankfully, they were sort of half asleep and just confused, fine after coming into mummy’s bed for cuddles. But just feel so sad for them.

Consultant claimed play specialists were going to be getting in contact with me imminently (heard nothing) to see if we can improve relationship with sitting on potty/toilet and taking meds as they wanted to try that as last option before hospital admission. Still haven’t heard.

Luckily, consultant booked in some admin time to call me today as I said I’d like to speak to her and follow up how increasing the Picosulfate has gone so will be awaiting a phone call at some point today. I don’t even know what to say to her now. You obviously know my situation with the babies @littlepup, we are also co-sleeping at least half the night, every night. My brain is absolute mush at this point.

 

[littlepup]

that sounds absolutely horrific for all involved it’s so unfair.

well my update is that I received a phone call from consultant last Monday as scheduled regarding plan going forward: they ended up saying after speaking to colleagues they didn’t feel comfortable doing the hospital option quite yet due to age (3y10m). They explained a 2yo is young enough to not know what is going on and a 5/6 year old you can reason with, but a 3/4yo are likely to find it very traumatic. Which I totally understand, but it’s so frustrating.

Instead they wanted us to up the Picosulfate dosage (she said we wouldn’t be able to achieve full disimpaction with it as it’s obviously not designed for that). We did it very reluctantly as previously we have tried upping the dose and it has caused them to soil themselves completely unknowingly.

Of course sods law is that we upped it from the usual 1.5ml dosage (all we can usually achieve with our medicine refuser!!) slowly up to about 1.9ml over the past 10 days and no movement whatsoever. Lots of complaining of tummy pain “rub my tummy mummy” “it hurts” and lots of sitting on toilet/potty “it won’t come out” and tears.

last night (day 10) I went in to check on them at about 11pm as noticed eyes were open on the monitor but no noise (plus was visibly uncomfortable all day and evening with tummy pain) and they were led there with two massive rock hard poos in their pants. I can only gather it happened whilst sleeping and muscles relaxed?! I have no idea, but it was extremely upsetting. I just feel like absolute tit. Thankfully, they were sort of half asleep and just confused, fine after coming into mummy’s bed for cuddles. But just feel so sad for them.

Consultant claimed play specialists were going to be getting in contact with me imminently (heard nothing) to see if we can improve relationship with sitting on potty/toilet and taking meds as they wanted to try that as last option before hospital admission. Still haven’t heard.

Luckily, consultant booked in some admin time to call me today as I said I’d like to speak to her and follow up how increasing the Picosulfate has gone so will be awaiting a phone call at some point today. I don’t even know what to say to her now. You obviously know my situation with the babies @littlepup, we are also co-sleeping at least half the night, every night. My brain is absolute mush at this point.

This sounds awful, you have my every sympathy and support.
“Tummy rub Mummy, tummy rub” is constant in our house too.
Of all the parenting challenges, I never anticipated this or would have believed how hard it is.
The added guilt of having to consider the baby/babies and the physical restrictions of just scooping them up for a cuddle or getting down to them on the potty compounds it too I think.

I hope the consultant can come up with something for you today xx