Breastfeeding allergic baby or switch to formula

[izzybizzybuzzybees]

Hello. My son is 8months old and is mostly breastfed. He has silent reflux and milk, egg and peanut allergy that we know of. Likely allergic to more. He is a very poor sleeper, maybe sleeps 7hrs max a night in many broken up chunks and naps for only twenty minutes at a time twice a day at most. He has never eaten any solids in his life and we have nurses coming to the house to encourage him to try them, after two visits we are still at the stage of letting him play and encouraging him to put toys etc in his mouth as he as an oral aversion and doesn't do this at present. His medication has now been changed to omeprazole which is not helping the aversion as it is filled with gritty particles and he chokes and gags on it, this again worsening the aversion. They won't prescribe me the liquid form as its too expensive!

I am due in for surgery later this year and due to this my son has been prescribed neocate formula which we have to encourage him to tolerate so that if necessary he can be bottle fed when my surgery comes. We have gradually upped the volume of neocate to EBM ratio and he can now tolerate a bottle with about 70% neocate in.

My problem is this: I have to be on a dairy, egg and nut free diet too in order that he defiant react through my breastmilk. My family feel that as he has been prescribed the formula we should switch to FF full time. I cannot decide what would be best for him. The nurses too have indicated they agree with this as he will then not be exposed to hidden dairy and should improve his sleeping etc. I can't decide what's best to do. He feeds every 1hr 30mins to 2 hourly at night and I am exhausted. The nurses and HV reckon part of this is comfort feeding and that if he is FF this wouldn't be as much of an issue as we could see the volumes he is taking etc

Ater typing this I don't really know what I'm asking to be honest! Would switching to neocate be better for him? Am I being selfish feeding him myself? What would you do?

If I was in your shoes I'd try to persevere. I know it must be a pain having a restrictive diet and bf seems like a pain when he is combination feed anyhow. But remember all the things in breast milk like steam cells and antibodies that cannot be replicated. Especially important in a sickly child. One of the reasons he comfort sucks is because he is unwell and needs you for comfort and reassurance.

I don't want to sound like I am bullying you into it. But that is what I would do

Your situation is absolutely horrible and i really didn't want to read and run. My lo has cmpa and reflux as a result, I bf her. On the occasion there has been a slip up I have a cry and say I'm not going to feed her anymore but ultimately I am her comfort and the vast majority of the time breast milk is the best for her. My dd is nowhere near as bad as your little one so I'm not saying its cut and dry only that I have a snippet of an idea of how you're feeling. And I really do feel for you. I know that with us as long as I'm careful there is no problem. I home cook and check all the allergy labels etc and you'll be doing that for your baby's diet anyway so I don't see why there would be more hidden dairy etc in your diet? But I guess you don't know without trying the formula, can you try one bottle and see if there's an immediate difference for start off? Please don't be pressured or make any quick decisions xxx

Thank you both for your replies. I appreciate outsiders opinions especially those that have or are going through similar.

The hidden dairy I was talking about is when he has reacted to food I've eaten that although didn't contain dairy on further investigation i found out it had been cooked in butter! He wouldn't be having anything like that as I do cook from scratch so can check labels etc.

It's hard having to avoid egg and nuts as well and I'm currently trying to lose weight an date things is normally eat I can't so that is depressing me too!

Im getting hardly any sleep and neither is he which can't be good for him.

I have reflux wedge and cot blocks on order which should arrive soon, I'm hoping these help with the wakenings due to pain.

I'm not going to decide just yet, I'm going to give the medication a fortnight to hopefully kick in and with this change and the raised cot it might help a bit at least.

It's so hard as I know it needs to be my decision but Im just looking for other opinions etc

Only you can decide what to do, but there's no guarantee switching to formula would make him sleep better and what you describe sounds fairly normal sleep for a baby of that age tbh, although I appreciate that doesn't help if you're tired.

I think it would possibly be helpful for you to speak to a BF counsellor or even a IBCLC if you can find one.

Op does your little one sleep on his back? My dd has never been able to manage this as I think it's too painful for her, she's slept on her side since birth and as soon as could roll onto tummy now loves sleeping in this position. She's 8m too.
I know what you mean about being depressing. I'm veggie, dairy free and soya free and at the start it was very hard and getting me down honestly though it gets a lot easier!! Have you been referred to a dietitian? That really helped me, also I feel much better since taking regular vitamins and extra calcium.
I'm also trying to loose weight, but it will come off with bf anyway and you have other things going on at the moment can you give yourself a break from the diet for another month just til you're a bit more sorted with the exclusion diet?
Like pp said there is no guarantee he'll be better with formula and now you know to be more careful (I really quiz waiters if we go out which is hardly ever anymore)
HTH xx
Ps sending you a hug

midori I emailed the only lactation consultant in Scotland last night after you suggested it.

doris we have been referred to a dietician but as yet no appointment has come through. He does sleep on his back but he doesn't roll yet so I wouldn't feel happy putting him to sleep that way at the minute until he masters that skill!

Re the weight, I've already paid my slimming clubs fees until the end of Aug so if I dint go or indeed just fall off plan then I'd effectively be paying to put on weight!

Izzy, not sure where abouts in Scotland you are and she's not a lactation consultant, but Karla Napier who is the Infant Feeding Advisor at the Royal Infirmary in Edinburgh really knows her stuff if you can get hold of her. If she can't help she may know someone who can.

Good luck.

My ds1 (now 6) was diagnosed with milk, egg, nut, fish and shellfish allergies as a small baby. I was breastfeeding and had to restict my diet in order to continue bf him.

It was hard but I had a calcium supplement (think it was called cacit) and multivitamins and iron. Ds1 was also prescribed neocate and he would have a 6oz bottle each night. He now has neocate advance each night (which he loves despite the smell/taste!).

Dd2 and ds2 also had same allergies (dd2 now outgrown them at 3 but I'm still restricting my diet due to bf ds2).

I do find it a struggle sometimes but have a really good dietician for dcs and myself. Luckily I can include soya as dcs not allergic to it and I find the milks/yogurts etc very good.

My DD is allergic to milk, egg and cats (though she doesn't eat the latter...). I am still BF - she is 2. We were recently given the go-ahead for me to have a normal diet after more than a year. It has been nice to be back on the milk chocolate, but tbh the restricted diet wasn't too bad and was good practice for thinking about managing allergy if DD doesn't grow out of it (though it seems like the allergy reaction is improving).

I see you are trying to lose weight. Trust me, if you cut out dairy and egg that won't be a problem. I am on a weight-gain diet!

I don't know where you are in Scotland but I didn't find the Dieticians at Yorkhill much use - the one I saw seemed to find breastfeeding a 1yo odd.

Stand your ground about the omeprazole oral suspension. Yes, it's eye wateringly expensive but makes such a difference. If your GP won't, get the hospital to.

Thanks again for the replies. I tried asking the consultant about the solution but was told she can't even get it for her patients as its so extortionate :-(

I find HCPs do want you to breastfeed yet when problems like this arrives they think formula is the answer!

My DS is CMPI & soy allergic. I have coeliac disease so I'm gluten free too.
My diet is obviously massively restricted but you get into the swing of things. He's 15 months and I still breastfeed.

I had terrible PND partly due to his crap sleep and tried him on neocate/BM but found it made him worse tbh. It seemed to unsettle him more, it's definitely not the cure all it's made out to be. Plus they can become intolerant to it.

8-12 months were a low point for us sleep wise with weaning and separation anxiety making things worse. It's settled down now and he does sleep through but is often unwell with something. I would hang in there if you can, I know it's hard but BM is the best thing for their immune systems.

I think at 8 months old he has had so much of the benefits of bf, if he was younger I'd say to continue but at that age and given the circumstances personally I'd move over to ff.