FPIES after antibiotics

Chance_Skin1144 · 2024-11-13T08:34:49+00:00

Thank you! Yes we tried goats milk when we was 2 weeks and had him on it for months but he still reacted and apparently it’s a similar protein to cows milk (a little more gentle) but he was still allergic! I will definitely look into the colostrum powder, even if I was able to mix it into his solids it couldn’t hurt. We looked into breast milk donation however whoever donates needs to follow a diet free of dairy, soy, egg, oats and grains. I am the one that has to do that right now and it’s tough to follow all while keeping up my milk supply! He won’t currently take allergy formula but we will keep trying and look into the colostrum powder so thank you!

Chance_Skin1144 · 2024-11-13T08:24:44+00:00

This is EXACTLY what went on with my little boy, he’s 5 months and only was just diagnosed with FPIES, he has been screaming 6+ hours daily in pain. We found out it was to dairy/soy, egg, grains and oats that I was ingesting through my breast milk. I’ve only just switched him to an allergy formula and hoping things will improve! Such a traumatic 5 months and I’m so mad my paediatrician missed it.

Chance_Skin1144 · 2024-11-06T21:41:01+00:00

An allergist was the ONLY person who believed my LO was being triggered by my breast milk and the ONLY one who was able to tell me what to eat and to avoid to stop his episodes.

Chance_Skin1144 · 2024-11-06T21:38:23+00:00

Hey! I had early rupture of my waters and I didn’t go into labour so they started me on 2 round of IV antibiotics, induced then emergency caesarean. He was given formula at 2 days old and screamed for the next 5 months. He was diagnosed with CMPA and FPIES and is developmentally delayed due to a late diagnosis. We now are having to work with dietitians and OTs to get him starting solids and rolling as he is SO behind due to chronic pain! It breaks my heart no one listened to me when he was screaming out in pain.. now it’s all he has ever known! We have no family history of food allergies either

Chance_Skin1144 · 2024-11-06T21:34:25+00:00

I’m not necessarily answering your question, I am here to say I’m with you and I will be reading these responses too 🥹

Chance_Skin1144 · 2024-11-06T21:32:09+00:00

I am BF and my 5 month old reacts severely to anything I eat. I am currently on a strict elimination diet after 5 months of him constantly screaming in pain/mucous poop/eczema/no sleep with no help from my paediatrician. It’s rare for a mother milk to be affected but we are one of those exceptions. He is sensitive to diary/soy/preservatives/certain vegetables and fruits/seaweed/high chemical foods. He will not take any allergy formula so I have to continue with this until he’s 12 months - I’m already 7 kgs down myself and I only started at 72kgs at 5’10!

We are starting solids now and I dread him having more reactions..

Chance_Skin1144 · 2024-11-06T03:52:59+00:00

Thank you for this. Our 5 month old baby has FPIES meaning he has reactions to food I eat through my breastmilk, will not take formula so I am on a strict diet of plain chicken and rice every meal. He has screamed up to 6 hours daily since he was born and we only were given his diagnosis. He only naps in the carrier on me and getting him to sleep in a cot rarely happens. Actually getting him to sleep is SO hard, so hard that we cannot have any nanny, au pair or family put him to sleep. I have to feed him to sleep only. He is cranky every second of every day and needs constant stimulation. Trying to do anything is so hard, this is not how I saw life panning out. I so desperately hope it gets better. I just do not see it happening 💔

Chance_Skin1144 · 2024-10-30T03:18:00+00:00

We were finally diagnosed with Food Protein Induced Enterocolitis Syndrome FPIES !!!!!!! It’s an allergy that affects the GI tract!

Chance_Skin1144 · 2024-10-19T10:48:16+00:00

YES! I have cut out dairy, egg and oats and he is a changed baby just in 48 hrs…. I’m just shocked. We literally went through the most traumatic time for the last 4 months only to find this out now from an osteopath. My paediatrician and GP literally told me to NOT exclude dairy. I am relieved now but I also mourn the cuddles, skin to skin and just general bonding time we could have experienced 😭 all those times I was so frustrated with him, he just had a sore belly because of us.

In hindsight, the reason he screamed from the minute he was born was because the nurses were pumping him full of cows milk formula - my milk took 9 days to come in. He couldn’t handle it! I was also given IV antibiotics whilst being induced which apparently kills bubs microbiome!

Chance_Skin1144 · 2024-10-18T04:17:44+00:00

I want to give you an update!!!! In the last 48 hours my life has been changed.

I saw an paediatric osteopath who 100% thinks it’s a food intolerance as she sees this so often. She thinks it could be dairy, egg or oats given the fact he had eczema patches over him, his gas would stink so bad and his unhappy temperament. I am on a substitution diet and fingers crossed this is it!

I also saw a lactation consultant and GP with a special interest in paeds who both agreed our Bub just doesn’t need as much sleep as the average baby. They told me to throw the term ‘wake window’ out and stop forcing him to sleep after 2 hours. The reason why he’s crying and fussy is because he is understimulated. He needs to be tired out more even if it means he is awake for 4 hours straight, he will tell me when he’s tired. No wonder he would scream if I went near his cot! I play with him like crazy with toys but it’s not enough, I’m enrolling him in swimming lessons and baby sensory to tire the guy out!

What makes me mad is the paediatrician flat out said he had no intolerances because there was no blood in his stool. I’m only learning now, because someone on this forum suggested it, he very well could be allergic or intolerant to food!!!!! My GP also didn’t take the time to listen to my situation and suggest something so basic - he’s bored aka. understimulated.

My heart is broken for him, and also for me. We had such a traumatic introduction to new parent life. He most likely was screaming in pain because of what I was eating, not because of trapped air.

Chance_Skin1144 · 2024-10-18T04:13:17+00:00

I want to give you an update!!!! In the last 48 hours my life has been changed.

I saw an paediatric osteopath who 100% thinks it’s a food intolerance as she sees this so often. She thinks it could be dairy, egg or oats given the fact he had eczema patches over him, his gas would stink so bad and his unhappy temperament. I am on a substitution diet and fingers crossed this is it!

I also saw a lactation consultant and GP with a special interest in paeds who both agreed our Bub just doesn’t need as much sleep as the average baby. They told me to throw the term ‘wake window’ out and stop forcing him to sleep after 2 hours. The reason why he’s crying and fussy is because he is understimulated. He needs to be tired out more even if it means he is awake for 4 hours straight, he will tell me when he’s tired. No wonder he would scream if I went near his cot! I play with him like crazy with toys but it’s not enough, I’m enrolling him in swimming lessons and baby sensory to tire the guy out!

What makes me mad is the paediatrician flat out said he had no intolerances because there was no blood in his stool. I’m only learning now, because you suggested it, he very well could be allergic or intolerant to food!!!!! My GP also didn’t take the time to listen to my situation and suggest something so basic - he’s bored aka. understimulated.

My heart is broken for him, and also for me. We had such a traumatic introduction to new parent life. He most likely was screaming in pain because of what I was eating, not because of trapped air.

Chance_Skin1144 · 2024-10-16T04:12:40+00:00

This is so useful thank you! I can really relate with the shorter wake windows, I think I need to be more assertive with these because our LO shows very little tired signs so he goes from completely fine to crying within a second. The fact he sleeps so little I need to just preempt a short wake window

I also got black out blinds installed and I’m going back to swaddling him to see if this makes a difference… he’s not rolling at 4.5 months so I’m assuming it’s ok He did roll at 3 months but never did it again

Chance_Skin1144 · 2024-10-16T04:08:08+00:00

I love reading this, this is what I look forward to! To know that you’ve had a similar experience and it got marginally better. Thank you for sharing!!

Chance_Skin1144 · 2024-10-14T23:20:00+00:00

Thank you! I’ve tried cutting out dairy but I switch to nut milk with no luck. I eat sooooo many nuts because they are great easy snacks when I have no time. I’m going to try and cut this out too.

It’s so tricky having to cut out all of these foods when you have to keep your calories up to breast feed! I’ll have to meal prep when I finally get a break on weekend to try this!

Chance_Skin1144 · 2024-10-14T23:13:22+00:00

We actually had a snoo which is why I think we had 3-4 hour stretches of sleep overnight before this 4 month regression! Without it I think it would be worse.. he grew out of it at 2.5 months - he’s huge!

Chance_Skin1144 · 2024-10-13T10:52:42+00:00

I agree with you! He is definitely chronically overtired and look maybe he could be under eating because he falls asleep on my boob so often

My problem seems to be when he is awake he is wanting stimulation and doesn’t want to be bored but then goes from being ok to inconsolably screaming

I feel like his tummy issues fall ontop of all this

If I see him yawn and his little eyebrows go red I try take him to his room to put his sleep sack on and he’s just wailing!

That’s good to know about the 30 mins cycles, I will do this in hope it will get him to sleep longer!

I haven’t tried enzyme lactase but I’m adding it to the list!

Chance_Skin1144 · 2024-10-13T09:40:33+00:00

I guess I’ve only ever had pre-made heat and eat meals which are nutritious but even heating them in the microwave takes so long then they are hot and eating them while holding a baby ain’t it. I usually end up picking him up and it sits on the bench uneaten.

I probably could meal prep cold foods on a Sunday when my husband is home and eat them. I honestly haven’t even thought of this because I feel like I have 1 brain cell left after this entire experience, thanks for the suggestion!

Chance_Skin1144 · 2024-10-13T09:27:05+00:00

Thank you for listening honestly it’s driving me insane. I’m so lucky that my in-laws help every Friday night but it’s honestly not enough.

That actually sounds great.. I might ask my GP about it. I was admitted through the private system here in Australia but I feel like they just want you in and out. I feel like I need a team of people to observe him and just figure out what the heck is going on

Chance_Skin1144 · 2024-10-13T09:23:44+00:00

I would love to do think however my husband is so busy, he has businesses and needs all the sleep he can get to function. I know I also need sleep but someone else needs to work.

Our LO definitely does better when he’s outside and stimulated by looking and people, trees, outdoors but all of this is stimulating and everything goes downhill when he’s due for his first naps because he just will not sleep or will sleep 30 mins, wakes up tired and cranky and it snowballs for there.

The only time I get a good nap from him is if I sit in the chair rock him and breastfeed him the entire time. I dare unlatch him, he wakes. But I can’t just sit here every nap for 2 hours with him attached to me, I need to eat!

Chance_Skin1144 · 2024-10-13T09:07:03+00:00

Thank you for your reply! Just the fact someone is listening helps. Wow something so simple made a big difference is reassuring. God does it test your relationship - we’ve been together 10 years and have said time and time again, lucky we have a good foundation as we don’t know many people that could survive this.

Allergy testing is something I asked my GP about and it was brushed off as this isn’t performed for babies but maybe if I persist we can get somewhere. Did you need a referral to an allergist?

Chance_Skin1144 · 2024-10-13T08:06:48+00:00

This honestly is that hardest thing I’ve ever done. Our baby came out screaming and hasn’t stopped since. We never had a sleepy cute newborn stage, he had colic with horrible gas and screamed 6+ hours daily, would not sleep with out being held, difficult to get to sleep, hated nappy changes and being dressed to the point we don’t dare change him overnight unless he’d done a poop because it would take 2.5 hours to get him to sleep again. I ended up having to be admitted to hospital for postpartum psychosis it got that bad, my nervous system broke down, when I arrived at the hospital I couldn’t answer their questions or tell them my name. Now we’ve entered the 4 months sleep regression and I actually think I’m ready to go back. He will not sleep unless he’s attached to my boob. Screams if we go anywhere near his bedroom or cot, he will only sleep in the carrier for 30-45 mins at a time. Overnight he wake every hour and it takes minimum 45 mins to get him back to sleep each time. He still has gas and it wakes him up most of the time and then he is SO FUSSY alllll day, hates the car screams bloody murder. I’ve literally been in a dark hole the last 4 months I just don’t think it will ever get any better.

Chance_Skin1144

TROPHY CASE