Neocate And multiple allergies/intolerances in an 8w old

[Notquiteinsane]

Apologies if this is a bit garbled - running on no sleep or food!!
DD2 is 8 weeks old and in this time has shown clear evidence of CMSPA so I have cut both dairy and soy out of my diet from 1w old. My 2 older DC's have both had the same, combined with reflux, so was expecting it...!
She has been majorly congested since birth, never anything to really show for it, but SO noisy. Everyone comments and people turn around in shops if I've got her in the sling as they clearly think it is me. Anyway, had done 2 weeks of wheat and egg free diet too, when she seemed to decline further. Irritable, acidic posseting and then bile in her vomit. Went on for a of few days, over a weekend and I was concerned but not panicking, also came up in a whole body rash (although was so hot and sticky I still wasn't overly concerned) so booked GP appt for Monday afternoon during which we were sent to Peads A&E and told not to stop on the way... Worried about blockage in bowel which was not the case after a contrast scan, however then admitted to the ward to investigate things. While there the nurses all commented on her breathing and the morning ward round resulted in the consultant wanting a 72 hour trial of Neocate. During this time she had 24 hours NBM and she was actually a happier and more chilled baby than I have seen her to date. Then went back to bf until the milk was mixed up and prepared...decline in symptoms. Following 24hours of Neocate the rash was gone and she was happy. The plan is to return for a review on Wednesday which will be a week of Neocate. I am expressing to try and maintain supply in case all of this has been misleading and she declines again. However, have two other children 3.5 and 2 (yesterday) so am struggling to maintain the expressing to the level my supply probably needs. Also the restricted diet is killing me as have very limited quick fix foods which you just need running around after a toddler and preschooler all day!
Basically the consultant said there are 1-2% of babies that will continue to react to breastmilk despite cutting out allergens and she thinks in view of the symptoms and the speed of recovery that she is in that %.
I think half the problem is that my hormones are going a bit crazy because of the milk supply issues and as a result I'm just in a bit of a panic about stopping bfing (which is what the hospital essentially will advise on Wednesday) because a) the milk is totally chemically made b) I feel less able to comfort her and totally confused by bottle feeding but want to do what is best for her and c) just hadn't intended to stop.
Am happy to stop but I just want a concrete test to prove things one way pr the other so I don't have that nagging doubt that I could have tried harder/done something else.
Just wondered if anyone has had any similar experiences? If you've managed to read this far!!

Expressing can be so time-consuming and frustrating. I'm incredibly impressed you are managing to do this when you have three children under four years old!

I managed to keep breastfeeding DS1, but lived on an extremely restricted diet for a long time, while keeping a very complicated food diary. He was reacting to loads of different foods, including lots of random-seeing things that I wasn't expecting at all.

I basically lived on broccoli and rice for a few weeks, then reintroduced everything else bit by bit. No medical professional will recommend that you do this - because they will worry about you compromising your own health.

DS1 had fairly bad symptoms when he was reacting through breast milk as a baby - wheezing, congested, occasionally going blue around the mouth, pain and screaming, horrible eczema - but never had bile in vomit. The situation you are describing is quite extreme.

I'm generally very much in favour supporting women to continue breastfeeding ... but if using Neocate is going to be the best thing for your baby and for your family as a whole, then please do let go of any guilt - this is not your fault!!

I'm so sorry you and your baby are going through this, and hope things improve for you really soon.

Thanks so much for your reply! I think I am slowly coming to terms with what will be the best solution for everyone. I just wish someone would take the decision out of my hands! But as I said, I'm guessing that will come on Wednesday. In all fairness, the drs I saw were all very pro-bfing and were virtually apologetic for having to suggest I stop.
The hospital did pass my details on to the milk bank, so at least my freezer full won't go to waste!

How did things go for you when it got to the weaning stage? Had the allergies improved by then or did you struggle with solids?

One good thing that has come out of the hospital admission is that we've had a referral to the allergy clinic and also the paediatricians want to keep a close eye, so at least I'll have opportunities to ask questions and discuss any changes.

Thanks again for the reply. Always helps knowing you aren't the only one to have gone through it!!

My DD has multiple allergies, some were discovered at 6 months, others like wheat at 11 months.

I breastfed her and I'm still breastfeeding her, and we are both on a dairy, soya, egg and wheat free diet.

I was very very pro breastfeeding and despite the numerous major obstacles, really fought hard for it. But in all honesty, I don't think it was worth it. If DD was on neocate from the start, it would have saved us so many tears and restless days and nights, and my sanity. Even now, at 14 months, I desperately wish she would take other milk that isn't breast milk, and she completely refuses to.

I was due to go back to work at 6 months and I've had to delay work as she is completely refusing to take the hypoallergenic formula (which was her only option). After 12 months, the dietician said she could take coconut milk but she doesn't want it. I'm at the end of my tether with the every 2 hour at night awakenings.

It is also so easy to make a mistake as a breastfeeding mother to eat the allergen. On top of that, you can't take something like piriton to get rid of the allergen from your body, you have to wait weeks for it to go, and it continues to harm baby! Whereas if they are on hypo formula you don't have to worry about that, and when they are weaned and they may accidentally eat something, you can give piriton and it will work instantly.

If I were you I would look at it like you are giving your baby the best. If the specialists are of the opinion that hypo formula is best for your daughter, then you must give her that, as that is the best for her.

Also to answer your worries, yes it may be chemically made, but so is the milk in your body. The key is what is best for your child.

In terms of comfort, don't worry, we have dummies and cuddles

And of course you hadn't intended to stop, and it wasn't part of your plan, but that happens in life. I found it quite hard to accept why my DD had multiple allergies and why life was do tough for me, but then I look around me and see severely disabled children and realise how ungrateful I am being, and how fortunate I really am.

All the best x

Thanks so much for the reply.

I hadn't given thought to the inevitable dietary slip ups!! The thought of having to go through this potentially each time that happens is enough to really make me think that Neocate is the way to go. I can control what I put into food, but you can't be 100% sure any food elsewhere is safe and unfortunately so many people just don't understand the sensitivity of it all that the attitude is very much 'oh a tiny bit won't hurt surely...!'
Sounds like a huge sacrifice that you've made and also for such a length of time!! I'm so lucky that my son was happy to go onto oat milk when that time came, but also his sensitivity was really just dairy and soya which you can live without for a while...
Thanks again, now just need to get my head around the bottles...!