weaning a reflux baby on neocate

[spotofcheerfulness]

hi there, my ds2 is nearly 5 months and has suffered from severe reflux from the get go. his paediatrician has advised us to wean onto solids early but he's not that bothered now so will follow his cues.
my concern is that although he's not beem diagnosed with milk protein allergy or intolerance, he's been on neocate for so long that his reflux gets much worse and more painful if we try him on the regular stuff, presumably because his body is needing to do the bare minimum to digest the neocate.

did you find a particular style of weaning helped your refluxy baby? and are there certain foods you'd recommend avoiiding?

My very big DS2 was/is the same. I tried religiously to wean everyday from 4 months (doctor's advice) but he was having none of it. It took till 7 months till he eventually took a relatively decent amount of puree. Even then he preferred to feed himself. So at 10 months I stopped the purees and he now has the same as his brother (2.5 years). 3 weeks later and he eats more than his brother!

We are wating for blood tests to confirm whether there is an intollerence or not. If there isn't then I will slowly reintroduce the dairy.

I have used rice milk and pure spread in place of diary in recipes.

Good luck

My dd has severe reflux and is under the hospital. She is six months. Her paed said to wait until she was 6 months even though the hv said she would probably be better weaned earlier (but they all say different things and she he wanted to see if meds helped). I also spoke to the paed about blw but he said he didn't really agree with it and to wean traditionally, he also said there are some danger foods, which would set her reflux off, like Apple and citrus and to stay away from them.

I also found this for you.

Most babies are weaned on fruit and vegetables as their first foods, but reflux babies can find some fruit and vegetables too acidic. Avoid acidic fruits like grapefruits, oranges, lemons and limes and tomato-based foods. Stick to green vegetables like broccoli or cabbage and try using pumpkin, potato, cauliflower and parsnips in your baby's diet. With a reflux baby, getting milk to stay down is very important because this is where she gets her nutritional needs from. The first weaning foods are really just for taste and texture rather than nutrition. Having said that, some parents find that solid food helps to keep the milk feeds down so actually helps a baby with reflux, but all reflux babies will respond to food differently.

There are some reports that a small amount of olive oil added into your baby's food helps with reflux because olive oil binds to bile acids, which are secreted into the intestines and assist digestion. Always talk to your doctor first if you are planning a new treatment for your baby, even if it is a natural method.

**I haven't tried the olive oil but may ask paed about this.

thanks v much folks, that's really interesting, esp about the blw advice and citrus avoidance. i actually tried ds on some baby rice today and he seemed quite keen on it. i had wanted to do blw with this ds and still hope to but i realise lot of its about the sheer bulk of the food. he is also constipated by the gaviscon we have to add to the neocate and have to use a laxative so am keen to get him onto stuff like pear which should help.

did you keep your dcs on the neocate in addition to the solids or did you switch to regular formula eventually? i guess i'm concerned that if he stays on neocate too lng he won't be able to digest anything else...

Sorry spot, my lo was bf. Not sure on neocate, how it works, but I had lo on formula at four weeks (long story) she was on the comfort milk. I found the thick stuff made the reflux worse as it stays around longer. I relactated as bm goes through the system quicker, this defo helped with the reflux.
I did however, find out that lo's reflux was because of a floppy larynx.

Have you tried any other meds? Dd is on ranitadine and we also tried domperidone but found this made her sicker. The latter one makes the food go through the system quicker.
The ranitadine really helps though. Are you under a paed?

DS has a floppy larynx too! Did the reflux improve as the larynx got stronger? How old is your DD now?
We are under a paed, DS was hospitalised for 4 weeks because his reflux was so severe so we've seen everyone around! He's currently on domperidone, omeprazole and gaviscon. Have tried cutting down on some of the meds but the symptoms immediately get worse and doc said to stay at the same dose so he eventually outgrows them.
V interesting what you said about the comfort milk as that's the one we've tried to get him back onto. I wonder if a regular kind would be better. We are due to see a dietician soon too, but you seem to get such different answers from different HCPs that sometimes it's more helpful to speak to other parents who have experienced similar things...

We had our check up appointment last week spot, he said he couldn't hear it any more, and as she wasn't being sick as much she was probably growing out of it, she is just over six months. When he dx it, he said it could have been a stridor, and that she may need an op but touch wood.

I'm sorry to hear about your ds being in the hospital it is very scary sometimes. I find now with dd that she has silent reflux. I don't give the gaviscon all the time (used to do in her bottle) I now give it with a syringe when she has a severe attack, and then she doesn't get constipated.
Have you tried ranitidine? We have to have the dose altered with her weight. My ds who is 6 has childhood reflux and ranitidine is the only thing that made a difference. It was affecting his eating and he became food phobic.

Our paed told me the comfort milks are no good for reflux babies and to stay away from them, also might be wrong but can you mix comfort and gaviscon? I can't remember.

How does your ds do with the flow of bottles. I have found now she is on a bottle, she can't tolerate anything other than a newborn teat, not sure how she will be able to cope with cups.
I have found the last few days though, now she is eating more solids that her reflux is much better. However, I gave her something with apple in and she wouldn't touch it, must remind her of the acid.
Good luck with the dietician, let me know if I can help anymore, like you said always good to talk to someone who is going through similar.
By the sounds of it though, it's the floppy larynx which is causing the reflux and hopefully not an intolerance/allergy.

My baby is on neocate and we started weaning at 5 months. If your dc is on neocate, i assume that this is because there is at least the very strong suspicion that your dc has cows' milk allergy/intolerance. Neocate is so expensive that they don't prescribe it unless a dc needs a formula with no cows' milk in it at all. And you say you have noticed that his symptoms get worse if he drinks something dairy-based. From what I understand from our own paediatrician at Great Ormond Street, an adverse reaction to dairy-based milks in a baby who has been on Neocate is not because their digestive system has to do the bare minimum with Neocate. It's because their digestive system reacts badly to dairy. If I were you, I'd stick to the Neocate and avoid all dairy for the moment. Our paediatrician says that in practically all these cases, the kids grow out of the intolerance and can eat dairy products normally. But you need to introduce these in consultation with your medical team and I doubt they would recommend doing this when he is still so dependent on formula for his nutritional needs. We found that since weaning DD's symptoms (vomiting and pain mainly) got so much better. That could have been because of the solids, or because she is older now and her digestive system is more mature, or because she has had longer on the Neocate and away from dairy. Who knows??? We use Neocate to make up cereal and baby rice for her as well as to make any "drier" meals a bit wetter and easier to eat.

Not much to add and my DS wasn't ever on Neocate as he was BF but I just thought i'd post and say that weaning made a HUGE difference almost immediatly. He had shocking silent reflux ( on gaviscon, domperidone and ranitadine) and it went pretty much soon as he started eating a decent amount. He was 5.5 months when we started but was prem so we should have started earlier if he hadn't been such a titch.

Thanks cardamon and Worzsel - that's really helpful about the weaning as the reflux seems to be getting much worse rather than better at the moment. He's not wildly impressed with the baby rice we've tried so far but he's only just 5 months so will probably give it a while before we try again. Were there any particular foods that your DCS had bad reactions to?

Not really, although banana is no good for her - lots of vomiting and tummy pain. I started with root veggies steamed and pureed, and then moved on to pear and apple (again steamed and pureed). I didn't bother with the plain baby rice, but after she'd accepted the fruits I tried mixing up rice with the neocate and then mixing in some pureed fruit. Go slowly and give your DC a couple of days with a new food before moving to the next one. And only ever do one new food a day. Sorry the reflux seems to be getting worse. DD went through a very vomity stage after we had started weaning. And then went off her milk more or less completely with lots of head turning which was one of her things she did when she had problems swallowing. Not sure why either thing happened, and she got over it after a while. I kept a food diary for months (have only just had the confidence to stop!). I wrote down everything she ate/drank and when and noted any episodes of vomiting and how bad they were, and episodes of pain/writhing/etc. She was also severely constipated and we had to give her a suppository most days for months. Again, I noted when we needed to and those days when she went on her own. It was helpful on occasion when talking to the paeds. If you are at the early stages of weaning, it might be useful. Although half the time whether they have a good day or a bad day seems so arbitrary and not at all related to anything you do or don't do differently. But don't suffer in silence. If you feel that weaning is not helping, or makes things worse or you are at all worried then go and see the paed again. Probably a good idea to insist on a review after a few weeks of solids in any case. Good luck! X

DD had silent reflux and was on omeprazole and gaviscon. She was small and bf so didn't wean til nearly 7 months, she just wasn't ready physically to feed, was bit floppy and poor neck/head control. Happy to say once she started solids the reflux improved so much and she began to gain weight, got stonger and grew quickly. Weaning was hard to start with, she liked her purees and ate them but she got major constipation and I had to give up several times and go back to milk only for a week or so. But once weaning got going the whole family got our lives back to normal quite quickly and she was a happy baby for the first time. It was a huge relief for all of us.

anthonytrollopesrevenge your post has made me cry, in a good way! I long for the day when DD (15 weeks, silent reflux, on ranitidine and gaviscone) will be a happy baby and we can get some semblance of normality back, when feeding won't be a battle and my day won't be governed by feeding, keeping her upright, etc. She's also small so may not be ready for solids for some months, but the thought that one day, one day, this will be over, is hugely reassuring.

I know it might not be solids for my DD, it might be something else, it might just be when she is a bit bigger and stronger, but you have reminded me that this really will pass, so thank you.

Dx

Hi deliaskis. Have been there. And it is awful. Really feel for you and hope that things get better. Have you been referred to a specialist gastro paediatrician? If you haven;t and you feel that your DD isn't getting better, then press for a referral. It is your right and your DD's right. Has cows' milk protein allergy been considered? Reflux and possible cows' milk protein allergies and DCs getting the right treatment from the right specialists are my real bug bears. It really will pass. And she won't remember any of it. And with time and after you've had several large and very stiff drinks/eaten a large chocolate cake/bought a fabulous handbag the pain of this will ease for you too. Good luck! XX

Hi Cardamom, thanks for the reply and the reassurance, I really needed it. DD is on treatment now and the acid is mostly under control, so she's not in pain as much anymore, but the actual reflux seems to be getting worse at the moment, and she's started throwing up more, so it seems to be getting less 'silent' IYSWIM, so I know we are nowhere near the point where she might be able to grow out of her dose. At the moment we're just under a general paediatrician rather than a gastro specialist. I think he had ruled out CMPI as she has always tolerated milk (has been FF since 3 weeks due to failure to BF), as in she didn't throw much up, but thinking about it now, she has always been difficult to feed, and always quite crampy etc. so I don't know if any of that is relevant. The paed was a bit kind of 'meh, they grow out of it', although I like this Dr in general, perhaps he isn't the right person for this....TBH I turn myself inside out with all the 'could be's and 'might be's that sometimes I just have to stop reading.

But one worry produces another one doesn't it? I know she will get better, and

Ooops my post got chopped off. I was going to say how I hope my anxiety about this time and feeding doesn't transfer into her having food issues later on.

Well, yes they do grow out of it, including CMPI. But it's horrid for everyone in the meantime, so I never think that that attitude is that helpful. Has she ever been tried on Nutramigen or Neocate formulas? Nutramigen is cows' milk based, but the milk is so highly processed hat the majority of DCs with cows' milk issues do well on it. Neocate is completely cows' milk free and some kids can't tolerate even a speck of cows' milk in tier diet. You could buy a tin of Nutramigen 1 (available over the counter from the pharmacist for about £15) and see if that helps. I'm sure she won't have food issues. I remember I felt utter fear and dread around feeding her when things were very bad. Now she is so much better and I know what I feed her is not going to cause her any distress, it's all just normal and everyday. The anxiety has all gone. XX

cardamom again you have made me feel better and given me hope that one day (and hopefully in months rather than years) this will all be just a memory.

D