New baby and post birth advice #37 The only way to eat porridge is to tip it in the bin

[wakametango 2.0]

He currently has oat milk and was prescribed a calorie drink which was pure fat so made him really uncomfortable and pooing a lot so I never gave him it so from the last 3 weeks he has finally gained weight from just oat milk and his lunch and dinner.

She did say if he didn’t get on with the calorie drinks she would prescribe neocate but if he is gaining weight now she might say he is ok?

He does have the PF yoghurts and is absolutely fine with those but is really uncomfortable and diarrhoea from soy based yoghurts.

The last 3 weeks many people have noticed how much bigger he looks and I can only put that down to quitting the dairy? For reference he has to wear 3-6 month trousers for them to stay up so it is pretty bad x

Okay weight is one thing but surely his calcium needs are another. I argued that mini Waka would be malnourished without all the lovely fats from dairy. How are you weighing him? You also have to play the system to get what you want so if the calorie drink is hurting him then stick with that and don’t share His weight gain and focus on how he’s meant to get his nutrients and calcium. I wrote an a4 sheet of notes before my appointments to argue what I wanted. If they said neocate junior is an option go with that. I doubt he’ll get the gut issues on that and it’s full of lots of nutrients for him.
mini Waka cannot tolerate any alternative milk so if you need to fabricate some issues in order to get the neocate, sorry, then do so. I am so angry that as mothers we have to FIGHT for what we know of right for our children. They refused mini waka neocate on the basis there was no medical need so the fact they’ve hinted towards that for mini stardust is amazing.
Also coconut collaborative do fortified yoghurts with no added sugar as mini Waka can’t have soya either

 

[stardust1]

With you saying he has a bowel condition has he had an op?
We've got issues here with one of ours and it's more an absorption issue as it passes through the intestines as apposed to an intolerance thanks to an operation.
I'd keep pushing your dietician and perhaps push your surgeon to explore other options if he has had surgery.

Yes he has had surgery on his bowels and also had an obstruction. Surgeon says it isn’t an absorption issue and all babies with the same condition are small due to not being able to eat as much. I feel he is making an ignorant comment and cba because I know for a fact there are loads with same condition with no weight issues and he also eats none stop. He would have 5 wheatabix for breakfast if you let him!

Okay weight is one thing but surely his calcium needs are another. I argued that mini Waka would be malnourished without all the lovely fats from dairy. How are you weighing him? You also have to play the system to get what you want so if the calorie drink is hurting him then stick with that and don’t share His weight gain and focus on how he’s meant to get his nutrients and calcium. I wrote an a4 sheet of notes before my appointments to argue what I wanted. If they said neocate junior is an option go with that. I doubt he’ll get the gut issues on that and it’s full of lots of nutrients for him.
mini Waka cannot tolerate any alternative milk so if you need to fabricate some issues in order to get the neocate, sorry, then do so. I am so angry that as mothers we have to FIGHT for what we know of right for our children. They refused mini waka neocate on the basis there was no medical need so the fact they’ve hinted towards that for mini stardust is amazing.
Also coconut collaborative do fortified yoghurts with no added sugar as mini Waka can’t have soya either

He is weighed every 2 weeks by the health visitor and he was just loosing more and more up until 2 days ago when he got his new weight and was up 1.5 pounds. She definitely said he could have Neocate but wanted to try those calorie drinks first. I don’t see her again until 6th of January now tho but I think she said if I need her before she can do phone appointments x

 

[Blair-Waldorf]

We’ve been in hospital all day, baby has bronchiolitis feel so sorry for him. He’s got his 8 week jabs on Thursday as well

 

[I’mThankyou_]

Yes he has had surgery on his bowels and also had an obstruction. Surgeon says it isn’t an absorption issue and all babies with the same condition are small due to not being able to eat as much. I feel he is making an ignorant comment and cba because I know for a fact there are loads with same condition with no weight issues and he also eats none stop. He would have 5 wheatabix for breakfast if you let him!

That is beyond ignorant! I'd be putting in a bloody complaint! You can request an alternative opinion so there's the option to push for that too!
I'm not sure what condition your little one has, but both of mine suffered with NEC when they were first born. One was mild the other had some of her intestines removed and since coming off formula she's struggled to gain weight and is dropping centiles but we were aware of this as they confirmed there's a high chance of malabsorption from the surgery (and any form of stomach/GI surgery)
You're well within your right as a NHS paitent to seek second opinions so I'll definitely be pushing them for someone else!

We’ve been in hospital all day, baby has bronchiolitis feel so sorry for him. He’s got his 8 week jabs on Thursday as well

Rearrange them the twins has bronch just before their 8 week jabs and our GP was more than happy to delay them because they felt so crappy.
Hope you're both OK xx

 

[Blair-Waldorf]

KW thinking I’m being over protective: This time of year when everyone’s ill what is it with people still thinking it’s ok to visit? Father in law just called to say “I’ve got a bit of a cold but I still feel ok to come over I just won’t get too close to the babies”. Erm no how about you pop over when you’re better
Call me paranoid but after what’s in news about kids getting seriously ill I just don’t want to risk it.

Omg no you’re absolutely right. The doctors in alder hey have just told me the same

it winds me up enough when people come to visit who wear loads of strong perfume there is just no need

Thank you @I’mThankyou_ that was my next question I’ll ring the gp in the morning. My eldest had it when she was 6 months old and that was bad enough but I’m a bag of nerves with him being a premie and being on a ventilator in NiCU when he was born

 

[stardust1]

That is beyond ignorant! I'd be putting in a bloody complaint! You can request an alternative opinion so there's the option to push for that too!
I'm not sure what condition your little one has, but both of mine suffered with NEC when they were first born. One was mild the other had some of her intestines removed and since coming off formula she's struggled to gain weight and is dropping centiles but we were aware of this as they confirmed there's a high chance of malabsorption from the surgery (and any form of stomach/GI surgery)
You're well within your right as a NHS paitent to seek second opinions so I'll definitely be pushing them for someone else!


Rearrange them the twins has bronch just before their 8 week jabs and our GP was more than happy to delay them because they felt so crappy.
Hope you're both OK xx

Can you confirm if there was a test or anything that they did to confirm the absorption issue? The issue with second opinions is his condition is rare so there is only 2 specialists at the hospital who deal with the condition and when I ask for the other surgeon they say the one we have is much more experienced. I know there is a few specialists at the Manchester Childrens hospital but don’t know if they are any better x

 

[wakametango 2.0]

Omg no you’re absolutely right. The doctors in alder hey have just told me the same

it winds me up enough when people come to visit who wear loads of strong perfume there is just no need

Thank you @I’mThankyou_ that was my next question I’ll ring the gp in the morning. My eldest had it when she was 6 months old and that was bad enough but I’m a bag of nerves with him being a premie and being on a ventilator in NiCU when he was born

100% delay! They can’t have them when unwell anyway I had to delay two of mine because of illnesses.
How is little Blair getting on?

 

[Jellybean093]

We’ve been in hospital all day, baby has bronchiolitis feel so sorry for him. He’s got his 8 week jabs on Thursday as well

Hope he is ok. And you also x

 

[I’mThankyou_]

@I’mThankyou_ that was my next question I’ll ring the gp in the morning. My eldest had it when she was 6 months old and that was bad enough but I’m a bag of nerves with him being a premie and being on a ventilator in NiCU when he was born

You're in exactly the right place, I know exactly what you're feeling in your head right now. Hopefully it doesn't come to that. Take it minute by minute, if you've got a nice nurse explain your fears, get them to explain everything you need them to into great detail if it helps ease your mind. They get our worries especially with the preemies. We did one night when they were literally the same age and we were discharged the morning after, Thinking of you both xx

 

[wakametango 2.0]

Yes he has had surgery on his bowels and also had an obstruction. Surgeon says it isn’t an absorption issue and all babies with the same condition are small due to not being able to eat as much. I feel he is making an ignorant comment and cba because I know for a fact there are loads with same condition with no weight issues and he also eats none stop. He would have 5 wheatabix for breakfast if you let him!



He is weighed every 2 weeks by the health visitor and he was just loosing more and more up until 2 days ago when he got his new weight and was up 1.5 pounds. She definitely said he could have Neocate but wanted to try those calorie drinks first. I don’t see her again until 6th of January now tho but I think she said if I need her before she can do phone appointments x

Yeah we only have phone appointments call up and say you want to discuss an update regarding the calorie drinks. I got an appointment with a 4 week weight and when I explained my concern with her nutrition I got an appointment in 7 days. At least you have the HV and dietian on your side. Sounds like you’ve got to the bottom of it (or on your way to understanding what is going on) by your yourself. Well done. It can be such trial and error x

 

[I’mThankyou_]

Can you confirm if there was a test or anything that they did to confirm the absorption issue? The issue with second opinions is his condition is rare so there is only 2 specialists at the hospital who deal with the condition and when I ask for the other surgeon they say the one we have is much more experienced. I know there is a few specialists at the Manchester Childrens hospital but don’t know if they are any better x

She had an endoscopy and biopsies when she was around 8 months old and they confirmed it.

100% the children's hospital is far better (that's actually our hospital for my problem twin) I'd be pushing for there tbh! I cannot fault them all 3 of mine are under various departments there and they are excellent

 

[Borntorun]

New thread!

New baby and post birth advice #38: I've just come to accept the fact that my children are in fact, feral

Thanks to @miaaaa for the thread title @Dipdab your wish is my command - a new thread before midnight! Guide to the thread for new members: Dress code? Pyjamas This thread is designed to provide support. If you can’t be supportive and find something nice to say, perhaps mumsnet is a better...

tattle.life

 

[stardust1]

She had an endoscopy and biopsies when she was around 8 months old and they confirmed it.

100% the children's hospital is far better (that's actually our hospital for my problem twin) I'd be pushing for there tbh! I cannot fault them all 3 of mine are under various departments there and they are excellent

Thanks, that’s good to know that they can confirm it one way or the other. I think I am going to call up and ask if he can get those scans done because at least that is one thing ruled out?