Children with allergies / gastro problems / asthma

[littlepup]

A happy update.
After being totally defeated and lots of tears from all of us, we've had a break through that has been going on over a week now.
The softening from the (8!) Movicol plus the Senna making it come and it's just seemed to click that it doesn't hurt, or if it does hurt, its better to hurt for a moment than hurt constantly. They just woke up one day with the tummy ache and I said 'you know what will make it better' and they said 'ok' and went. They've gone since. At Nanny's house, at playgroup, at Mummy's work - miraculous! They said after a few days, 'Thank you for teaching me how to Poo Mummy'
They are trying to go every time they wee which actually may be a little too much but I'll not complain because it often comes. Next step is to figure out the maintenance Movicol dose, we're currently on 2 child sachets which seems to keep it pain free and will continue this until it just becomes second nature but I think we can drop to one. It's still quite a novelty that warrants everyone having to have a look, big cuddles and praise, even phoning Nanny or Auntie's and Uncles to tell them, I'm hoping it just gradually becomes part of life but as long as they're going, I don't care.
I feel like I've got my happy child back and realising only more how miserable and lethargic they'd been.

I hope everyone else is moving toward a solution x

 

[aggytha]

Finally got an appointment with the health play therapy team for Monday! Not really sure what to expect, but apparently they can help find ways to get medication in children and improve their relationship with toileting/witholding etc so we shall see

 

[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)

 

[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 shit. 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.

 

[InTheDollsHouse]

Finally got an appointment with the health play therapy team for Monday! Not really sure what to expect, but apparently they can help find ways to get medication in children and improve their relationship with toileting/witholding etc so we shall see

Thank goodness!

Play Therapists are amazing. Hope it goes well

 

[InTheDollsHouse]

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

If she is going regularly-ish it could still be overflow. That’s what happened here. He was clearly in pain, hiding to try and withhold, tummy hard. We had explosive poo which is what I knew was overflow, and he told me (he was 2) “my poo is sad because it can’t come out”

Managed to get into a brilliant GP who agreed when I said I’m sure it’s impaction. He also did an exam and found a fissure so prescribed a numbing cream - that helped loads with the fear and stoped so much withholding.

He was already on daily laxido but had been on 4 sachets a day for the week prior. When we saw that GP he increased to 6 for two days, then 8 for two days with an instruction to go back if it hadn’t helped.
Then 8 until I was sure it was cleared, then 6 for a few days and a gradual step down.

Our GP confirmed impaction by feeling abdomen. I think we were lucky that he was happy to be bold and push ahead with treatment to be honest. Next step would have been hospital.

The change came after that when I removed gluten from my LO’s diet. He got SO bloated after bread and pasta. Since then he has never ever struggled with his bowels again. It’s finding the trigger combined with the right treatment for the blockage, I think. We were lucky to see a wonderful paeds gastro who really validated it all for me.
---

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.

Mine can’t have dairy so I used the chocolate Oatly a lot to hide it in!

 

[aggytha]

We haven’t, managed to clear impaction at home but honestly I’d have taken any option by that point although I think it would have felt a big thing. How do you feel about it?

Consultant thinks we are nearly at that stage as movicol and the like has been completely refused for a long time (to the point of them refusing to even drink plain water etc). We are now at the stage where water intake is fine so don’t want to risk it again, plus they have always been a medicine refuser (even hates Calpol etc) but we are managing to achieve a small dose of Sodium Picosulfate daily and have done so for almost 6 months now. Which is a huge huge breakthrough.

Still not achieving movement anywhere near daily, so they think we might need to start over from scratch and a hospital admission would help as they can get the play specialists, psychologists etc involved too due to the knock on effects. It’s clearly a chronic issue that has now had a psychological impact and is causing them to also withhold due to being scared of the pain/medicine etc.

Consultant is very aware of my particular situation (3rd trimester with twins) so thinking hospital admission sooner rather than later would be a good idea. I desperately want to get on top of it and help them (especially as due to start school in Sept) but feels so extreme and I know they will be absolutely terrified x

 

[aggytha]

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.

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.

 

[aggytha]

So pleased for you and your little one @littlepup we are seeing small improvements but not quite there yet x

 

[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 shit. 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

 

[littlepup]

Thank you. The relief is unreal.

we are seeing small improvements but not quite there yet x

it all keeps going in the right direction.

 

[littlepup]

How are you all doing?

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.

 

[Sooks31]

Thank you. I will do and I’ll report back! Xxx

 

[InTheDollsHouse]

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

You aren’t getting it wrong. You are thinking about your LO’s body autonomy and trying not to cause more upset while trying to provide necessary care.

The intention is what makes the difference, in situations like this. In the intention to heal, or hurt? Absolutely to heal x

 

[InTheDollsHouse]

Never did I ever think I’d have a whole photo album of poo in my phone

 

[aggytha]

Thankfully haven’t had to try, but a suggestion I’ve seen is to use tic tacs to practice with.

Is there no other option, or is it that the GP doesn’t want to prescribe and/or pharmacist doesn’t want to provide possibly due to cost?

It’s actually upon speaking to play therapy and saying how I was concerned that we cant get enough Picosulfate in them and I’m really not sure what the soloution is managing more than 2.5mls is near impossible. Movicol has been flat out refused for a long time and any sort of liquid medicine is a huge huge battle.

I said I’d be willing to try anything really and they suggested Bisacodyl (I’ve seen the tablet and it’s actually probably half the size of a tic tac!) so we’ve been given a leaflet with info on how to practice taking tablets and work up to the right size but I’m really not sure how easy it’s going to be with such a young child!

 

[Sooks31]

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

 

[aggytha]

It’s so hard trying to know what to do. What the ‘right’ thing is.

Play specialists are amazing, they make such a difference. But it’s still a lot.

Do you know the plan if you did go ahead? Eg little by little or one big initial action to clear and then maintenance (if that makes sense!)

It’s really good that the consultant is being proactive. Do you think they would be making the same suggestion if you weren’t pregnant? That might help the decision, if you know it’s what would be recommended anyway.

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.

 

[InTheDollsHouse]

Spin off from the Ashley James thread but open to anyone who wants to share and get or give help with these challenges

Obvious disclaimer of no medical advice, just parents and carers finding solidarity and support.

 

[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?!