bf to ff for cmpi baby

[nearlyreadytopop]

not sure where to begin with this but I would appreciate any advice.
ds is now 7 weeks. At 2 weeks he was admitted to hospital with stomach trouble, after a week of tests he was discharged with a cmpi diagnosis. I have been dairy, soy and egg free on advice from the hospital dietician. The projectile vomiting has stopped but ds remains refluxy. As he continues to gain weight he is unmedicated.
I really believe in bf but ds is tt. I had it snipped after 1 week and again today. There's been no improvement in latch and my nipples are in agony. At the clinic today we were given a 50/50 chance of improvement due to thickness and scar tissue.

I don't know how long I can continue feeding for if there is no improvement. It's getting me really down and impacting on my general family life.
I worry that by not bfing him I'm effecting his future health.
I should add I bf ds1 for over a year, he was tt and it was miserable for me. He's asthmatic and anaphylactic to egg.
Has anyone any advice?

No real advice from me, just sympathy & bumping.

BFing on a restricted diet is tough enough even without tt problems & if his reflux doesn't improve are you considering eliminating something else from your diet (eg wheat) or going the Nutramigen/Neocate route? Do you have any more appointments with dietitian or paediatrician? You need support with this. If you want to change to hypoallergenic FF do not feel guilty, it's not the same as the usual BF vs formula debate. Good luck - I hope someone else with more specific experience comes along for you soon!

thanks for replying zam
The restricted diet isn't too bad. I'm used to reading labrls for ds1.
I have a dieticians appointment in a few weeks so will see what they say about dropping gluten (if I'm still feeding). His paediatrician did warn that if we couldn't get him symptom free with diet control then he would have to advise formula.
My concern is that the wind/reflux is due to a poor latch. He clicks and glups through most feeds. So I wonder whats caused by tt and what's caused by intolerance/allergy.

I think you have to be practical - you say that bf is making you miserable and impacting on your family life. There may well be health benefits of bf (though many don't stand up to scrutiny) but there are also benefits of formula, especially if your child has dietary issues. Certainly don't beat yourself up either way. I think if you have managed to bf for seven weeks through all this stress you have already done really well. But I do empathise about the difficulties of deciding whether to stop, as it is hard to go back if you do. My first daughter (now nearly 4) had similar issues and was on formula from about 3 weeks, my second was bf for six months. There is no discernible difference in their health so far! The dietician may recommend something like neocate or nutramigen which in my experience can work really well and solve a lot of problems. Good luck!

My advice would be get your baby on neocate ASAP, before he or she gets older and gets fussy about the taste.

Your LO has been diagnosed with cows milk allergy but might actually be allergic to more things like egg and wheat too, and you will only find out at six months when you wean.

My advice would be to put him on hypoallergenic formula such as neocate ASAP. If you don't want to do that, then put it on him for 2 weeks whilst you express milk, and then see. If he is better on it, then stop expressing and let your milk dry up. If it's the same, then you can decide whether to continue BFing or not.

My advice is based on my personal experience btw. I stopped breastfeeding at 13 months because my baby was waking up every hour (despite me being very strictly dairy, egg, soya and wheat free). When I stopped breastfeeding, DD's sleep improved rapidly but she refused to have any milk at all. It is difficult because we now have to give her other supplements and it's not the same as her having formula in terms of nutrients and minerals. I wish I had put her on neocate in the 1st month or two of her life (when she may have accepted it).

I would agree with HappyNap, i think a trial at least of neocate is warranted, you could pump to keep your supply in case it doesn't help. If lo reacts badly enough to be hospitalised i would be concerned he may have the most serious form of cmpi known as FPIES. My son has this and i found it impossible to get him well on bm. He was poorly until 10 months old when i finally made the switch. We were very lucky that he actually liked the taste and took it no problem, most at that age won't.

Try colief as well

Am going through the exact same with 8 week old

I think the tummy upsets from the dairy proteins have left him unable to digest the lactose too
It's helping

I've got a tin of nutrimagen here and I'm trying not to cave surely my milk must be better for him. Am df sf ef

Tt and latch-wise, can you try nipple shields? This is exactly what they are designed for!

piggyboo what is fpies? He was admitted with a swollen tummy and was in shock. He had a massive build up of wind and part of his bowel was thickened/inflamed. He was also spiking high temperatures.
I am df,sf,ef and have been religious about it.
His syptoms have improved in that there is no longer the projectile vomiting after feeds. Evenings are still the worst when he cries a lot and fights being on the breast even though he was originally showing all the signs of wanting to be fed. He gets really sweaty and literally comes of with a scream. I think he has silent reflux as well. I would love him to be a happy content baby if that means formula then so be it
Our hospital appointment has been put of until December so I'm hoping GP can help on Mon.
Thank you everyone for the advice.

Try taking out wheat and gluten out of your diet.

Also, give your neocate a try. Just be firm with GP if you want a prescription.

And if you are in London, ask GP to refer to you to the allergy clinic at St Thomas's

FPIES is food protein induced enterocolitis syndrome. It causes projectile vomiting and shock 2-6 hours after eating a food/ formula. It can also be chronic so if small amounts of the food are taken daily (like when bf) then it produces intermittent vomiting, reflux, bloating and sometimes diarrhoea with or without mucus or blood.

More info here fpiesuk.org and fpies.org and fpiesfoundation.org FPIES UK have a fb support group too.

After a good chat with the GP today we now have a script for Nutramigin AA. Plan to transition ds onto it over the next week. Hopefully he will feel better and I'm looking forward to pain free nipples!

Please to hear that! Hope it all goes well for you and keel us updated.

Pleased to hear that. Do let us know how you get on

I've not read the full thread yet but wanted to share our experience. DS is almost 11 weeks old, terrible breast feeder and very fussy. Posterior tongue tie found at 6.5 weeks, which I feel was too late for him. We never managed a good latch and always used nipple shields. Topped up with Nutramigen.

It was hard, despite the formula we were feeding for 10 hours a day. I debated stopping for weeks but kept persevering. We were dairy free, but I also noticed reactions to beef.

I gave up breastfeeding last weekend. I thought I'd miss it.. but I've now got a smiley baby interacting with me instead of a fussy baby attached to my boobs. His only symptom that remains is the reflux (he vomits a lot an hour or 2 after each feed). We get sleep. We no longer have horrible green nappies (I'm sure there are other allergies as these have only improved after being solely on Nutramigen). He's even climbed back up a centile with his weight after dropping down 3!

I wish we'd stopped weeks ago but I couldn't get over the idea that he needed my breast milk. If you keep expressing, you can trial it and see if it suits you. Just do what suits you and your family best - breastfeeding shouldn't make you miserable.

Oops, just read your last post - good luck!