Poor Baby

It has been a tough couple of weeks for the little ones. We have trialed some foods…avocado, plum, and pears and challenged the “new” formula (Neocate Jr.) the GI doctor put them on.

The result? Fail. Fail. Fail. Fail/Pass. The fail/pass is really no surprise at all. We have suspected for some time that the Neocate Jr. was causing a reaction for BabyM and BabyR – sure enough when we removed it – we began to see improvements in their appetite and stools. Two weeks on the old formula (Nutramigen AA) and they both passed their FIRST FORMED STOOL in MONTHS! So the fail was the new formula and the pass was the old formula. I just heard back from our Nutritionist and the “old” formula leaves them lacking in some key nutrients so we will have to have a special supplement compounded by the Cumberland Apothecary.

It seems that we are always going one step forward and two steps back. Poor little BabyM has become SO constipated as a result of the formula change (believe it or not this implies that she is NOT reacting)! Last weekend we had to give her a suppository – which was traumatic, but it worked. Even though we followed up with a daily magnesium supplement (which before Neocate Jr. worked great), today marked another 5.5 days since BabyM passed any stool. Great. Last night we gave her milk of magnesia (per our favorite Dr. Sullivan) and this morning she was in so much pain and couldn’t pass anything. So I had to take her in to see Doc. Poor baby was crying and screaming; “No, no, no, no, no…” So before nap we had to give her a fleet enema – that was AWEFUL – but thank God for Bethy.

She still has some pretty extreme “stool passage” ahead – I hope she can get it all out tomorrow.

What a tough couple of weeks for them. Trialing foods is no small thing on their little systems. After pears BabyR was up most of the night and screaming for much of it. Both BabyM and BabyR had similar issues following the other foods but not nearly as extreme as pears... which is frustrating since pears are almost unheard of as a trigger food for FPIES babies.

For any of you FPIES mommies – we had mood changes: irritability, aggression, fussiness etc. as well as allergy ring diaper rash (plum), malabsorbed fat curds in stool (avocado), fever, sleep disturbances (major with pears), ENT irritation and itching, increasingly loose stools, mucous, reflux (gone except during reactions).

Well big things are happening this month. There is lots of news in what we are doing for diagnostics in September, and I will write about all of that…another day. This has been a long one – and it is almost time for BabyM's next dose of milk of magnesia.

Poor baby.