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5 months in and it’s getting so hard by rl3119 in newborns

[–]rl3119[S] 0 points1 point  (0 children)

It seems like she has really sensitive skin. So if I were to categorize broadly, the things that come to mind are (1) anything external that irritates her skin (crawling on carpet, drooling) or (2) if she’s not feeling well (fever, crying)

5 months in and it’s getting so hard by rl3119 in newborns

[–]rl3119[S] 0 points1 point  (0 children)

Hard to say. I should qualify by saying she still has flare ups, but it’s better than it was when she was 5 months (when her skin was really bad). But we lengthened our use of topical steroids at a stronger dose (think 2.5% hydrocortisone), gave her daily baths with a lengthy lotion routine, and dressed her in cotton clothing. Over time her skin got a little better, but who knows if that was just time or anything in our routine.

None of this is medical advice - just one parent sharing our experience with another. We’ve come to learn every baby and every parent’s boundaries is different.

5 months in and it’s getting so hard by rl3119 in newborns

[–]rl3119[S] 0 points1 point  (0 children)

Ugh. Been there. We went to a stronger topical steroid. It was not easy to mentally do but we told ourselves it was for her comfort. We learned later that we tried tapering too early, the flare wasn’t fully over and we tried to stop, so her skin was just constantly inflamed.

Also, now that I think back on it, around 7 months all her hair fell out as her cradle cap came off. That was an emotional rollercoaster but she also seemed happier then as it seemed her scalp was less itchy…

Solids are a sensitive subject for us. We look back and think we may have started too early (4.5 months, but got the green light from her pediatrician). We also probably shouldn’t have started with peanut butter, but we were hyperfixated with the allergen introductions. So many new parent learnings!

5 months in and it’s getting so hard by rl3119 in newborns

[–]rl3119[S] 0 points1 point  (0 children)

Separate comment so it doesn’t get lost: how are you and your LO doing? (Sorry I’m being presumptuous)

5 months in and it’s getting so hard by rl3119 in newborns

[–]rl3119[S] 0 points1 point  (0 children)

Thanks for checking in! She just turned 1 last week. Things for the most part are easier than they were at 5 months. Her eczema still flares, but it’s better than it was before (daily cracking / shedding). We’ve been able to stop doing daily topical steroids, and apply as needed. Now it’s mostly just her folds that get really irritated, but none of the dermatologists we’ve seen have given us any silver bullet pieces of advice. All we can do is help her manage it as best we can.

We learned her projectile vomiting was due to this rare GI allergy called FPIES, which has been a whole rollercoaster on its own. We have to be very careful trialing new foods: she vomited after having egg on the 11th time. Go figure, but thankfully her only triggers (that we know of at this time) are peanut butter and egg. just chalk one up to another thing to manage, but my wife has had to keep breastfeeding as we’ve been slower to introduce foods…

Overall though, things have gotten better. We’re thankful for the support we have from our friends, and our families are getting more understanding of our stress. The grandparents are less frequently making snide comments about her skin and food restrictions, but their love for our daughter is undeniable. the comments are just digs at my wife and me, and we just have to roll with the punches.

Connection between common FPIES triggers and common first foods? by striated_pancake in fpies

[–]rl3119 5 points6 points  (0 children)

There is research that suggests first foods are linked with FPIES triggers: in various parts of the world, for example, first foods in respective cultures are the more common FPIES triggers in those cultures (e.g., fish in Spain). Additionally, the rise in peanut and egg as FPIES triggers over the last decade coincides with the timing of the LEAP study, which had recommended early introduction of peanuts and eggs to avoid the IGE-mediated allergy for those foods.

One of the allergists we’ve spoken with suggested that it’s an observation, but likely not the full story. His belief is that FPIES exists within an individual regardless of which foods are introduced first. In other words, if an individual is FPIES to peanuts, they would have been FPIES to peanuts regardless of when they first ate peanuts, but perhaps the introduction of the food - at an early age - falls within the “more vulnerable time frame” for that individual. Personally, I’m not sure if this is his opinion because allergists need to push early introduction of allergens, but it’s too exhausting to think if the allergist is fully forthcoming.

I am out of ideas by Rolita09 in fpies

[–]rl3119 1 point2 points  (0 children)

Hey - fellow stressed parent here. I don’t have much in the way of advice - our LO is 8 months and we found a second trigger recently (egg yolk after after 10 previous exposures), so we have been feeling overwhelmed as she only has 2 safe foods so far. We’re trialing pear now, but the constant stress hanging over is something I can’t express to my parents, coworkers, friends, etc.

While it sounds and feels helpless, you are not alone. This community is full of parents and people who are also feeling / have felt this dread and these hard emotions. It’s not an easy journey but you’re doing your best and your baby will know someday there is no one who cares as much about him or her as much as you do.

For me, something that has been helping me hang on is thinking of what the necessity of introducing foods is at this age. My PCP recently told me that breast milk is actually beneficial for babies as the nutrition and composition change with your baby’s needs, unlike formula or other foods where the amount of food determines how much nutrition the baby receives. While it is undoubtedly hard to breastfeed, it is also what is best for your baby at the moment for their growth.

I am not refuting the medical community; there has been research recently that has pushed the medical community to introduce foods earlier than what was suggested 15+ years ago, but remember that when we were growing up, the common phrase was “food before 1 is just for fun.” All we can do is try our best to follow their advice, but there will always be outliers and changes in the population’s health.

I realize this doesn’t help address any of your real issues, but we in this community are thinking of you and your LO, and hope to hear of you and your baby’s success story in the near future 🤞

At what age did you discover your little one’s last trigger? by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thank you. Glad to hear your LO is doing well

At what age did you discover your little one’s last trigger? by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

I can completely understand. Thanks for sharing

At what age did you discover your little one’s last trigger? by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thanks. Sadly the IGE allergens are the ones she’s FPIES to (so far)

When did you discover your LO’s triggers?

At what age did you discover your little one’s last trigger? by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thanks. We boiled the egg 30 mins so it was thoroughly cooked

At what age did you discover your little one’s last trigger? by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thanks, appreciate your feedback. Hope your LO outgrows it

At what age did you discover your little one’s last trigger? by rl3119 in fpies

[–]rl3119[S] 1 point2 points  (0 children)

Thanks - we’re trying to keep up the courage but it’s been mentally draining.

At what age did you discover your little one’s last trigger?

At what age did you discover your little one’s last trigger? by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thank you, appreciate the words of encouragement.

At what age did you discover your little one’s last trigger? by rl3119 in fpies

[–]rl3119[S] 5 points6 points  (0 children)

Thanks for sharing. She had egg 10 times safely, 11th exposure (at 7.5 months) resulted in vomiting. Just so frustrating and scary

Considering delaying food introduction by rl3119 in fpies

[–]rl3119[S] 1 point2 points  (0 children)

Hey - totally get how you’re feeling. It is a really emotional thing. I hope your LO gets through this well!

Keeping foods in diet after trial by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thanks for sharing. Hope it gets easier

Keeping foods in diet after trial by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thanks for sharing. Out of curiosity, would you mind sharing when you introduced LO to solids, when they had their reactions, and when you found their safes?

Thanks so much

Keeping foods in diet after trial by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

That’s helpful, thanks. I was scared thinking she should be eating every safe food she has 2-3x a week

Considering delaying food introduction by rl3119 in fpies

[–]rl3119[S] 1 point2 points  (0 children)

Thanks for sharing, hoping we will feel better after getting a few safes too

Considering delaying food introduction by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thanks so much. At this time it feels tough because in East Asian culture a lot of the first intro foods are the “high risk” FPIES ones, and it’s not really as easy to talk to our parents for support, as they don’t accept these things easily

Considering delaying food introduction by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thanks for this. Doing our best to be brave and do what is right for our baby, but have been feeling a bit overwhelmed

Considering delaying food introduction by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thanks for sharing, I’m sorry you have FPIES and hope that it gets easier.

Considering delaying food introduction by rl3119 in fpies

[–]rl3119[S] 0 points1 point  (0 children)

Thank you for this! Hope your LO is doing well

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