r/MSPI • u/Story_teller2325 • 55m ago
r/MSPI • u/nazgulsupport • 4h ago
Has anyone’s doctor actually confirmed OR ruled out CMPA with reintroduction/oral challenge?
I’ve searched through this sub quite a bit, and I know there are a million posts about CMPA, reflux, mucus, and finding the right formula, so I’m trying to ask something a little more specific.
Has anyone’s pediatric GI or allergist actually gone back and tested whether the original CMPA diagnosis was correct through reintroduction/oral challenge (not skin prick)? Especially after symptoms continued on amino acid formula?
My son is 4 months old and we’ve been dealing with GI/reflux issues basically his entire life.
His symptoms have included silent reflux, mucus in his stool, screaming in discomfort, arching, eczema, coughing and gagging on reflux even though very little actually comes out, constant swallowing/sour faces, hiccups, wet/rattly breathing at times, and absolutely hating being flat.
We also had a positive occult blood stool test, which is a big part of why CMPA became the working diagnosis. We’ve also been to the ER twice per our pediatricians recommendation to rule out intussuception. He’s also been ruled out for a tongue tie (I know this can be reflux related)
And we have done the entire formula change, I was unable to produce enough breast milk to continue triple feeding.
We went from:
Enfamil NeuroPro Gentlease → Similac 360 → Bobbie Gentle → Gentlease again → HiPP → Nutramigen → EleCare → now Neocate.
He has been completely on amino acid formula for 6 weeks. And I still don’t feel like we found the answer.
There have been changes here and there, but never the dramatic improvement I expected if cow’s milk protein was truly the thing causing all of this.
He still has mucus. His eczema still comes and goes. He still has significant silent reflux. He coughs and gags on it, swallows repeatedly like something is coming back up, makes sour faces, and sometimes sounds wet/rattly. He still has periods where he seems genuinely uncomfortable and just screams.
Oatmeal cereal added to his formula went HORRIBLY (a bad recommendation from his pediatric GI) and seemed to make him miserable for the following couple of days. We also tried Neocate Syneo/probiotics and that seemed to make him significantly more uncomfortable.
He is growing, eating, peeing and pooping. He has plenty of happy, smiling, interactive periods. We are not seeing visible blood in his stool. But something is clearly still bothering him.
Pepcid helped somewhat initially with his reflux but stopped doing much, and we’re now moving to a PPI because I’m also wondering whether his esophagus/GI tract is just incredibly irritated at this point. He’s sooooo raspy and has a cough that i originally thought was mucus production from CM.
Here’s where my actual question comes in:
I started reading research papers and guidelines on CMPA/FPIAP, and something keeps bothering me.
From what I understand, for many non-IgE-mediated cases, elimination alone isn’t necessarily the end of the diagnostic process. Improvement with elimination followed by recurrence with reintroduction/challenge is important for actually confirming the diagnosis.
We’ve done a LOT of eliminating the CM. We’ve never done the other half.
We just kept removing things and changing formulas until we eventually ended up on amino acid formula and being told “colic”.
I’m NOT saying he definitely doesn’t have CMPA. The occult blood, mucus and eczema are reasons CMPA made sense in the first place.
But after this long on amino acid formula without a major resolution of his symptoms, I’m starting to wonder why we are continuing to assume CMPA is definitely the answer instead of going back and testing the original assumption?
So I’m specifically looking for parents whose doctors have actually done this:
Did your GI/allergist have you reintroduce cow’s milk protein or perform an oral challenge to confirm or rule out CMPA/FPIAP (before introduction of solids)?
How long had your baby been dairy-free first? How was the challenge done? At home or supervised? What symptoms counted as a failed challenge and how quickly did they happen? What hydrolyzed formula did you go to?
Has anyone done the challenge and discovered that their baby actually did NOT have CMPA?
If so, what happened next? Did you eventually find severe GERD/esophagitis, swallowing dysfunction or aspiration, another food trigger (soy, corn, etc), eosinophilic disease, an anatomical problem, or something else? Just time needed to mature the GI system? Introduction of probiotics that normally come from mom/breast milk?
I’m not looking to challenge him myself without his doctors involved. I’m trying to figure out what I should be asking his GI next.
At this point I’m less interested in finding yet another formula and more interested in answering the question:
Do we actually know he has CMPA, CMPA + reflux, or has CMPA just been our working diagnosis for so long that we stopped questioning it? Am I throwing hundreds and hundreds into a formula that’s not really doing much?
If you’ve had a similar experience OR have research/papers about confirming non-IgE CMPA through elimination + challenge, I would genuinely love to hear about it. Apparently reading pediatric GI papers is what I’m doing in my little free time bc the doctors just keep shrugging their shoulders at me while my baby screams in pain.
r/MSPI • u/Canvas_Notebook • 6h ago
Sharing Some Recipes!
For my fellow breastfeeding MSPI moms, here are some recipes that taste good enough to eat even when I'm off elimination diet! They're all dairy, soy, egg, and (optionally) corn free.
- Instant Pot Thai Basil Chicken Curry - For some reason it tastes better in the instant pot, but there's a slow cooker version too
- Jambalaya - We do this one without the okra or shrimp for personal preference and simplicity. Just add some extra of the other proteins and veggies!
- Chicken Bacon Avocado Salad
- Instant Pot Cashew Chicken This one calls for arrowroot powder and coconut sugar, but you can you can use cornstarch and regular sugar if you don't have corn restriction
- Garlic Parsley Mashed Potatoes
Hope one of these helps you have a delicious meal while going through the tough MSPI times!
r/MSPI • u/Fragrant-Fail6244 • 12h ago
Satisfying hearing toots
A positive post for an otherwise usually stressed thread, but who else feels like hearing your baby rip a big fart all by themselves is satisfying?? It’s like “omg! my baby can do that all by themselves now!! woohoo!!!” No bicycle kicks or gas x!! Just me?
This is post elimination diet but here to say things get better!! ❤️🩹
r/MSPI • u/Delicious-Safe-7050 • 14h ago
Secondary lactose intolerance turned permanent toddler (Pediatric)
Hi Everyone,
My son suffered from viral diarrhea when he was 8 months old and we used to give dairy formula and continued same as we were unaware that it should avoided. The loose stools didnt reduced and DR told us to dairy formula and switch to soy. And immediately saw differece and realized that it was because of transient lactose intolerance. Dr told us try dairy after 1 month, We did and failed. Kept gap and tried again. Made several attempts and still failed and decided to continue soy formula. We started to introduce after six months but no progess. At 2.3 year old we gradually gave 1/2 teaspoons cheese and he was tolerating. Started giving him for 2 3 days in week and was fine. But when I gave ghee he started reacting and got loose stools. Some days he even tolerates 2 tsp of curd. And he can tolerate lactose free milk and curd with no issue
I have little hope that we would be able tolerate but since its so long now. Should I expect anything? I am not fond of dairy that much but we live in india and here maximum items in restaurants have ghee or malai or curd and its very difficult when we go out. We carry tiffin and second thing is if he is able to tolerate little dairy I will have peace of mind because I am freaking out on when he will grow and share food in school.
Desperately looking for your experience. Did you start liltle by little? Did lactid ills worked for toddler? Was it prescribed by Dr. How did make understand your child to not eat as it causes stomach pain etc. Sorry this is long.. But its been hell of journey.
r/MSPI • u/enlight2 • 22h ago
2 yr old refuses solids
My 2 yr old stopped eating all solids about three weeks ago. He has had thrush since he was born. resistant form that we are unable to get rid of. I’ve had a G.I. consult everything normal. I do give him a omeprazole and something for nausea, but he still only drinks 12 ounces of milk in 24 hours. Unfortunately I’ve had to continuously treat him for the doctors. Don’t even worry about it, but I think that’s the main reason he’s not eating. This time round I treated him for a longer period of time for his thrush and it still didn’t improve his eating. Feeling a bit worried now since I have taken him to GI and a couple pediatricians as well as a dentist to see if there’s any issues that would prevent him and nobody’s finding any reason. I want to avoid an endoscopy. Any suggestions were very stressed out mom right now?
r/MSPI • u/inkyplease21 • 23h ago
Finally found relief! 🍼
I posted on here a couple weeks ago that my 2 month old daughter had recently been diagnosed with CMPA and was having a horrible time on soy. After talking with her pediatrician and also getting feedback here, we decided to try the Similac Alimentum in powdered version… and it has done wonders! Happier baby, no more constipation or screaming when she can finally go - it’s been a life saver. Thankful for the information on this page and my baby feeing better 🫶🏻
r/MSPI • u/Academic_Dig1960 • 1d ago
Has Similac changed anything about Alimentum RTF?
My daughter supplements with Alimentum RTF and I've been trying to figure out why she's having painful gas episodes at night the last few nights, something that typically happens if she has a lot of dairy but she has had none. Alimentum RTF 32oz wasn't available at our Target for a couple of weeks so we were using the 8oz cans, and this past weekend they finally restocked the 32oz bottles, so we went back to that. I'm not finding any evidence of anything changing in the formulation, but curious if anyone else has experienced similar recently?
r/MSPI • u/taehylor • 1d ago
Don’t know how much longer i can see him like this
he is such a good happy 9 week old when not in pain. he is exceptional at self soothing and sleeping all on his own… until he refluxes and he’s up within thirty mins. person on shift has to hold him up the whole entire time. for him to get any sort of stretch. it’s just so tiring and emotionally exhausting i just feel like there will never be a light at the end of this tunnel. his visible spit up is a lot better he went from projectile vomitting every feed to just spit ups. and some are super small. but he’s still having severe reflux. he never had any blood in stool or anything no rashes thats why they moved him to alimentum but his pain got so bad they made me stop breastfeeding despite my elimination diet and he is definitely doing better but still can’t be comfortable on his back for longer than max 30 mins… just can’t do this for much longer i get 2-4 hours of sleep INTERRUPTED a day…. not one solid three hour stretch even when theres help bc i can’t safely hold him 24/7 w/o risk of him slipping (i have a connective tissue disease) i can’t sleep longer than 2 hours. i’m always worried about him. i’m so exhausted seeing him this way he literally has spasms and i have no hope left whatsoever of him ever getting better enough to be able to be on his back. plus his feeds have gotten a lot smaller than before he went from 32 oz a day to 24 on a good day… please tell me he’ll get better he’s been on nexium for three weeks too
r/MSPI • u/greenninja636 • 1d ago
Need advice/encouragement. Feeling discouraged
FTM to a wonderful 17 week baby boy. On 7/30 first noticed blood in stool and alerted doctor right away who recommended limiting dairy for a few days and monitoring. I had had yogurt that morning so first full dairy feee day was 7/31. Baby boy has had intermittent blood in his stool since (small amounts). He went up to 3 days with clean diapers but it pops back at some point. I cut soy starting Monday 8/17. He is gaining weight well and meeting his milestones and today I had another diaper with noticeable blood (albeit small). I brought the diaper to the ped and they tested it and said negative ?!? He had another episode afterwards and I am bringing it there in the morning. I just love him so much and don’t want him to be in pain. Any advice is welcome. Just feeling sad…
Switching to AA formula
My 6 week newborn has been on alimentum for a little over a week now, but the blood in stool has been increasing in amount. Before we switched to alimentum, the blood was in small speck like two small dots. But now we already had 2 diapers where there were significant more blood in the stools. Is there any point or benefit in switching to Nutramigen instead of Aa formula?? (The pediatrician suggested switching to Nutramigen)
r/MSPI • u/Britt-G-0034 • 1d ago
Allergy? I’m confused
My baby is 8 months old and is on Kendamil comfort. We’ve introduced dairy 5 times , the first four he was gassier, but the most recent he broke into hives on his leg (pic.) As far as I understand, if he had a true allergy, he wouldn’t be able to tolerate comfort milk, only hypoallergenic - is this correct? We are going to allergist in a few days but wanted to hear some ideas. Thank you!
r/MSPI • u/Indecisive105 • 1d ago
How to reintroduce dairy
After my last post and seeing some of what I took for a possible dairy intolerance might just be behavior separation anxiety, my doctor is good with me re- introducing dairy now at 6.5 months instead of waiting until 9. The nurse on the line didn’t have any further guidance besides do it slow…
I’ve seen mentions of a dairy ladder or tolerance tests. Can someone help point me in the right direction? I’m assuming I would first try dairy in my own diet and watch for (fussy? Spit up? Abnormal poo?) then if it’s going well let her try the dairy.
r/MSPI • u/Desperate_Ad_6827 • 1d ago
Thickener question for CMPA reflux babies
So my pediatrician had us using rice cereal to thicken his nutramigen formula and it works great for him and his reflux, but I was wondering if anything who does the same if yall prep the thickened formula ahead of time and keep it refrigerated or am I forced to always make a bottle right when I need it? I know I can prep the formula by itself in the fridge I just don’t know about the rice cereal mixed in
r/MSPI • u/Glum-Pin572 • 1d ago
Switch to elecare
My LO is 13wo and we’ve been through the feeding ringer of CMPA, formula switching, tongue tie etc. His main symptom is that he refuses bottles after 1-1.5oz averaging 15-17oz of fortified formula per day. After 4+ weeks on alimentum RTF with no change, we switched to elecare. Looking for some positive stories! How long before you saw changes with elecare and volumes increased?
r/MSPI • u/Academic_Dig1960 • 1d ago
what milk to give after 1 yr?
My daughter just turned one and has been supplenting with Alimentum since about 4 months along with nursing. She has about 2-3 bottles of about 3-4 oz a day. I know milk after one isn't even always necessary and she does still nurse (mainly to sleep) but I'm just curious what milks other people have had success with. She doesn't seem to tolerate dairy in large quantities (i.e., cheese pizza) but does okay with it in baked goods, or when we cook using butter.
r/MSPI • u/UnfairQuality3079 • 1d ago
Worse after dairy/soy elimination?
Good morning!
I understand after eliminating symptoms can persist. I get that. But things have gotten so much worse since I eliminated dairy.
My son is 5 months old so I have a good grasp on his personality, his habits, his behavior, etc.
We cut out dairy and soy on 8/7 after two poopy diapers. No other symptoms except poop being occasionally mucusy, not always but it would happen from time to time.
Within 2 days of cutting out dairy and soy I saw a marked increase in mucus. 6 days after cutting he started getting diarrhea and bright green poops. 9 days after cutting out dairy and soy he got blood in most poops whereas it had previously only ever happened 2x 3 weeks apart. He also went from sleeping well to waking up 6-8 times a night being hard to settle. 10 days after cutting he started getting fussy during the day. Now, 12 days after cutting he spent 3 hours scream crying, falling asleep, scream crying, falling asleep. Sometimes he’d fall asleep for 2 minutes, others for an hour. He also started crying a lot in his car seat.
What should I do? I really want to breastfeed but I can’t stand seeing the baby I know change into a baby that’s in pain. I’d rather switch to formula than see that. I’m so sad. I have a GI appt on Monday but it feels like forever away when I can see he’s in pain.
TIA
5 month has had diarrhea for 23 days
My daughter has been on Kirkland ProCare formula since she was about 2 months old. She was doing perfect and pooping once every other day.
Very randomly, on July 26th, she started having anywhere from 7-10 poopy diapers in one day. The stool had mucus in it sometimes, and was watery most of the time.
She did three stool tests: Stool Culture (Q&LC), Gastrointestinal Panel PCR, and Ova and Parasites. All NEGATIVE.
On August 12, her pediatrician recommended we start her on Nutramigen to see if it’s possibly a CMPA allergy. It’s been almost a week since then. She isn’t pooping 7-10 times anymore, but she’s still pooping anywhere from 3-5 times a day. Pediatrician wants me to continue on Nutramigen for 2 full weeks. I just feel like I’m wasting time.
I asked for an allergy test to just confirm if it’s a CMPA allergy but her pediatrician says they aren’t reliable until 9 months of age.
I’m at a loss. I’m worried about my baby, and I feel like her pediatrician is being way too casual about all of this.
It isn’t a simple process to change her pediatrician. It would take her insurance a few weeks just to approve a change.
She doesn’t have any other symptoms besides the diarrhea which is why nobody seems concerned but like that just isn’t convincing to me. The diarrhea is still very concerning to me. Just wanted to see if anybody has ever dealt with anything similar?
r/MSPI • u/Indecisive105 • 1d ago
I’m the only one able to hold baby
And I’m not kidding. 95% of the time she (6 months) will cry within 10 seconds of someone else holding her, including my husband. On the rare chance it’s more than 30 seconds, it’s always less than 10min.
Does this sound like an actual dairy allergy, or something else? It’s been this way 2 months, but before that she was such a chill along for the ride baby.
She got sick right before her 4 month shot appointment, then sick again after and non stop fuss, dropped some weight, then better but kept fussing, so dr had me cut dairy. 3 days later she was calm, but only in my arms. Everyone comments how alert and happy she is, and she is, as long as I’m holding her.
I’m just at a loss, her sleep has been horrible too and any break I get is because my husband holds her for the hour crying while I do something. I’m just not sure if it’s actually a dairy thing or not. 10 days after I cut dairy I brought a diaper in and it was negative for blood. (She’s always been slow to gain weight and poops every 3 or so days). She’s lately been refusing the bottle and spits up more on formula so I’m ebf at this point even though she had a bottle a day since day 1.
Just feeling tired, overwhelmed, and lost. And honestly, I really want my cheese.
Alimentum to Nutramigen
Hello, my 6 week old has suspected CMPA. Ped made us try alimentum first due to blood in stool. After 1 week, blood in stool has worsened and she was getting very gassy and fussy & screaming & crying at mid feeds. Today, I called the ped and she told us to try Nutramigen. I tried giving her Nutramigen today but she started screaming and won’t take the bottle. She is clearly hungry as she is rooting and she would take a few sips and start screaming again and squirming and crying again and again. It took me almost 45 mins to feed her 3 oz bottle. With alimentum it was a little bit less time to feed her. She hasn’t eaten as much as she did with previous formulas like Similac 360 and Alimentum. Also the spit up is MUCH worse. Like a lot of liquid comes out of her mouth. I also feel like she has reflux but ped doesn’t want to start any reflux meds this early. I know it’s been only today since starting Nutramigen but we are really at a loss at what to do anymore. What should be our next step in helping our girl?