Is there light at the end of the tunnel?
Hi all,
I feel like I can hardly cope any longer. My son is now 4 months old and was put on neocate last week as they paed says his reflux could be caused by a cow's milk protein intolerance.
He seems happier and more content in himself on the neocate during the day. But he is hardly drinking anything. It takes me over an hour to get 2-3oz down him so he is only taking around 15oz in 24 hours with a struggle. He is then sick after each feed.
He is also still waking every hour in the night and will not be settled in any other way than drinking 1oz milk and then falling asleep in my arms and refusing to drink anymore (he won't fall asleep if I just rock him, only if he drinks 1oz!). But when I lay him back in his cot his hands go up to his face and mouth he starts fidegting and groaning. Is all of this becuase he is just getting used to the new milk? I'm at the end of my tether. The paed said I have to keep him on the neocate for at least 4 weeks but I am soooooooooo tired I just can't cope. (ran out of space, see rest below....)
I feel like I can hardly cope any longer. My son is now 4 months old and was put on neocate last week as they paed says his reflux could be caused by a cow's milk protein intolerance.
He seems happier and more content in himself on the neocate during the day. But he is hardly drinking anything. It takes me over an hour to get 2-3oz down him so he is only taking around 15oz in 24 hours with a struggle. He is then sick after each feed.
He is also still waking every hour in the night and will not be settled in any other way than drinking 1oz milk and then falling asleep in my arms and refusing to drink anymore (he won't fall asleep if I just rock him, only if he drinks 1oz!). But when I lay him back in his cot his hands go up to his face and mouth he starts fidegting and groaning. Is all of this becuase he is just getting used to the new milk? I'm at the end of my tether. The paed said I have to keep him on the neocate for at least 4 weeks but I am soooooooooo tired I just can't cope. (ran out of space, see rest below....)
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Replies to This Discussion
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Permalink Reply by Amie on -
Hi Han
Thanks for your email earlier, i thought today i had a breakthrough she started to finish her 6oz but that only lasted two feeds and the constant sickness afterwards ... i have to ask myself was it worth it. I am going to try the colief drops tomorrow to see if it is a lactose intolerance and if it works then il tell the doc (she's sick of seeing me at the moment) at leat this way i dont have to change her milk but fingers crossed i see a change it is just so tiring i feel like my day never ends.
xx
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Permalink Reply by Hannah K on -
I know how you feel Amie, it is soooooo hard. I was running to and from the doctors so many times, the receptionist doesn't even ask for my name anymore when we come, lol, she just puts us straight in the system, but she's lovely and always asks how we're doing. I have cried so many times at the doctors, it's embarrassing, but after a number of visits and a lot of fuss I think they have genuinely seen how difficult it has been and have referred us to the right people at the hospital.
I definately think James does better on smaller volumes. When you go the doctor next or when you go to the paediatrician don't let them fob you off and don't think they are sick of you. Their job is to sort out health problems, if people didn't have problems they wouldn't have jobs!!! It's hard, but keep going until you feel happy that something is being done.
Think about the alcololics getting free liver transplants on the nhs and obese people getting gastric bands, and you won't feel half as bad about taking 10 minutes of their time to try and figure out what is causing your baby pain!!!!
I hope the colief drops keep working for you!!
Han xxx
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Permalink Reply by Aisling Byrne on
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Hi Hannah,
From my experience and what i have heard from docs and dietitians, it would appear that the immune/digestive systems of babies like this just can't seem to cope with the build up, at that it is a build up of the milk that the body can't deal with. Neocate is already broken down for the babies so their digestive systems cope better with this product. My daughter is still on neocate and i believe that it helped her. She is now taking 3 6oz bottles a day and it is easier now than it has ever been. My suggestion to you would be to leave James on Neocate and introduce the solids gradually as they will soon be his source of all that he will need. Neocate is very sour tasting and it takes a while from them to get used to, Cow and gate is sweet and it may have been that James enjoyed the taste more thus taking more than the Neocate but giving him pains later.
Hope this helps
I got to the stage where i would have tried anything but eventually i think the Neocate helped.
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Permalink Reply by Hannah K on
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Hi Aisling, thanks for your post. I think you are right, it seems to be a build-up of milk products. I am keeping him on the neocate for now. He does seem to tolerate a certain amount of dairy, for example he seems to be okay if a give him a little yogurt or fromage frais once a day. He seems to really like it and it gives him extra Calcium.One day I opened one of those jars of baby yogurt though and gave it him as a dessert on all THREE meals as I wanted to use it up, and he went schizo. So I think I will stick to only once a day!!
James does seem in less discomfort on the Neocate, eventhough he isn't taking huge volumes. But his weight is okay and he is taking a decent amount of solids, so it seems to be slowly coming together.
Han x
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Permalink Reply by Sarah on -
I would say if your LO was "relaxed & content" on Neocate & "irritable & crying" on Cow & Gate that he most likely DOES have prob with dairy.
The fact he started guzzling down lots more milk on cow & gate compared to amount of Neocate is no suprise to me as I've actually tasted Neocate & it's disgusting!
I was amazed my LO drank it at all! Hosp Dietician agreed its foul/not at all sweet like normal formula but can't be helped due to hypolallergenic nature of it & that Nutramigen is worse.
So as your babes reflux seems caused just by milk allergy & being on Neocate has enabled you to stop all meds if I were you I would stick to this!
You're lucky he didn't refuse it completely after retrying c & g
If weight continues to be issue you could ask for Duocal which is a high calorie powder you add to milk which my LO had with Neocate which also improves taste a bit.
Also you could try adding Neocate to weaning foods such as rice, porridge, potato etc to boost intake.
I hope he stays happy & manages to continue with weight gain however small at least it's heading in right direction.
Weaning has really helped my LO gain weight so hopefully be same for you!
Good luck with dairy free & with luck he may tolerate dairy better as he gets older. x
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Permalink Reply by Sarah on
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Personally I'd return to weaning which I'm sure will help for better nights sleep as long as nothing acidic at tea. Porridge mild & filling.
I couldn't do controlled crying with my 1st babe so now way I would try it with a refluxy baby as hard enough to be strong ignoring a crying baby anyway without concerns over whether it's a pain cry or not!
Also lots of crying can set off reflux (as does laughing!)
I did withdrawal technique with success for eldest boy (Baby Whisperer book lifesaver!) takes longer but much gentler as you never leave them to cry! He still sleeps well at 4.
Luckily had little prob getting my LO sleeping, but if he did grizzle laying my hand on him was often enough comfort to settle him or gentle patting returning to laying my hand on him again as soon as calm gradually withdrawing when settled.
Obviously if hungry I did have to feed but if night feeds increased then next day I'd try to increase his intake in day particularly b4 bed.
What meds is your LO on?
I give my LO daily dose of Omeprazole/Losec Mups at bedtime to ensure pain free night even if not a sick free one!
Everything is so much easier to cope with after a good nights sleep (for babe too!) so I wish you all the best with your sleep training & would seriously recommend Tracey Hogg's Secrets of Baby Whisperer book!
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Permalink Reply by Sarah on
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Do you have cot raised or sleeping wedge? If not could be acid rising causing discomfort need to drink small amount of milk to soothe oesophagus.
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Permalink Reply by Hannah K on
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Hi Sarah,
Thank you for your posts. James has been on Neocate for over two months now and looking back it has been a real success. I sometimes wonder how we managed to get through the first 4 months of his life!!!
The screaming for hours and hours on end has stopped, all the back arching, refusing to feed, screaming as soon as I lay him down on his back, waking every hour in the night screaming, they have all stopped, He's no longer on any medication, which really is a godsend, and in general has become such a happy baby.
He is still sick quite often but it doesn't seem to bother him. It must not be as acidic as when he was on the cow's milk formula. It's probably just normal posseting now, whereas before it was very acidic and was being washed up into his esophagus repeatedly all day and my god did he used to scream for hours!!
His sleeping is also much better, when we put him down now he is usually asleep within 5-10 minutes. We still have the wedge under his cot as he is still a bit sick sometimes and does get a wheezy chest.
He's 6 months old now and we have completely weaned him to three meals a day. So far he has tolerated every food he has eaten, so fingers crossed. He then also still has 4 bottles of neocate a day.
The paediatrician has now recommended adding small amounts of cow's milk back into his diet, such as yughurt, cheese, fromage frais, to test out his tolerance levels. He also said I could start mixing an ounce of full-fat cow's milk (just from the supermarket) into his neocate (i.e. 1oz cow's milk to 5oz neocate) to slowly start building up his tolerance levels.
Hannah xxx
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Permalink Reply by Sarah on
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Hi Hannah
That's great James is off his meds now & seems to have improved.
Good luck with reintroducing milk products.Hope it goes well. It'll make his life (& yours!) easier if he learns to tolerate it.
Bet you feel so much better with more sleep & no screaming!
I feel rough today after only one bad night & then early start today due to pain.
My Hv seemed suprised pain had returned & said she thought he'd grown out of it as his weight has improved so much! I wish!
He's had Omeprazole upped so wondering if he needs domperidone increasing too! He's less sick but seems in more pain!! In general has always been a happy chucker.
He's 7mths now & I thought it was supposed to get better not worse. Gotta go naps been cut short by more pain...my poor wee man!
Sarah x
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