FPIES, neocate & weaning

[emsken]

hi All

My DD (21 weeks) has finally been diagnosed with FPIES (Food protein intolerane entercolitis syndrome) - this means that when i have tried her on formula, 2 hours later she is incredibly sick and lethargic and we have ended up in A&E. I am now waiting for the patch tests to be done but in the meantime, the paed has said that as she is so hungry i could try baby rice which she LOVES... the only problem is that i can't try her on anything else i don't think until the patch testing. Only question on the baby rice is how often should I give it to her as she will keep eating and eating! The problem is that although she loves it and she isn't sick i think it hurts her tummy as she wakes crying and tummy feels hard - is this normal?

On another note, does anyone have any great tips to help her drink the neocate? I am still BF but my milk supply is much lower so she is hungry all the time!!!

oh also, do you think tummy cramps are a sign of interolerance or normal for aa BF baby?

Wanted to post but not sure how helpful I can be. Ds2 was on neonate and it is foul! I was ff though and mixed neocate with his other formula and kept on increasing it until it was just neocate. Is expressing an option? Tbh though I would imagine you are best off keeping her on breast milk as long as possible as formula introduction may only lead to other problems and it sounds like her digestioin already has a lot going on.
I guess the advice with the rice would be slowly slowly but I wouldn't get to more than 2 lots per day until at least 6 months.
Can you ask for an appointment or have a phone consultation with a paediatrician or dietician? My hospital were really helpful and I had my consultants number to call with any problems.

i would stop the solids tbh! it doesn't sound as though she is ready for it at all, and if she has intolerances then the last thing you want is to cause her more tummy upset

i would say that no, lots of crying and hard tummy after having solids is not normal. so coupled with her age and her FPIES I would jsut stop it

also, the more she fills up with baby rice which is basically just filler and contains hardly any calories then the less milk she will take, which is full of calories!

so if she is hungry she needs more milk, not solids.
No advice on neocate, but if you want to increase your supply then just feed more often and it should catch up!

yes i think i agree on the neocate - just nervous in case i dry up entirely!!!! I am wondering if i have introduced the rice too quickly...started on tues with one teaspoon and then yesterday she has 1 teaspoon twice per day and today she had 2 teaspoons twice a day... and now is cramping! I guess its a learning curve!

Has anyone else experienced any / all of the above?