https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Mon, 13 Apr 2026 04:21:24 +0000 https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2206262 Fri, 12 Jun 2015 04:36:53 +0000 brownie 2206262@https://boards.hellobee.com/ <p>My son is MSPI. He was miserable as an infant to the point of failure to thrive. We trailed food once or twice with bad reactions so we decided to wait for allergy testing. At 18 months we did allergy testing and soy came up but milk did not. So we tried milk and he handled it. So soy was out, milk was in and he gained weight.</p> <p>At 3 he was super backed up and we decided to pull milk back out (though he occasionally has some cheese and yogurt and ice cream) and he is so much better without it. He still cannot tolerate soy at all at 4 years old. </p> <p>As for testing at 18 months he reacted to soy, oats and cashews in the test. At 3 he reacted to chicken and environmental allergens. At 3.5 he did blood testing and now he can't have soy, peanuts or sesame seeds. Yeah the only thing he actually reacts to is soy. </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2206199 Thu, 11 Jun 2015 22:46:36 +0000 SunriseMama 2206199@https://boards.hellobee.com/ <p>@anbanan15, Oh, your poor son!! Disappointing to know you can't really trust the patch test. I had read this study (<a href="http://www.ncbi.nlm.nih.gov/pubmed/16846453" rel="nofollow">http://www.ncbi.nlm.nih.gov/pubmed/16846453</a>) and was encouraged that all the negative results were true negatives. But super small sample size. :/ </p> <p>We are out West, so we unfortunately aren't close to CHOP, which I've read (and I think saw in your blog entry) is great for FPIES patients. I found that another allergist in town trained there, so I may see about getting a referral to him.</p> <p>I am definitely grateful for the number of foods she can safely eat, and I have no issue being very careful and conservative and waiting for food trials if there is a true reason for us to do so. I just would like to get a second opinion to see if it's truly necessary for us, considering all the extra work/anxiety/frustration it adds for our family and our baby. She really wants to eat our food and begs to do so, and I worry she may think I'll always be her short-order cook because she always gets a different meal from the rest of the family. Obviously a small worry compared to a potential serious health issue, but one I would rather avoid if I could.</p> <p>My son (now almost 4) actually had delayed vomiting from rice cereal as a 7 month old, and I just chalked it up to reflux/overeating and didn't research much about it or even bring it up to our pediatrician- I just waited a couple weeks and tried again, at which point he was fine. I was trying to be extra cautious this time with my daughter, but I always wonder if I would have had the same results I did with my son if I had followed the same, less cautious approach. </p> <p>Thank you so much again for all your help. I am so, so glad that your son has come out on the other end of this and that he can now happily eat everything! </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2205783 Thu, 11 Jun 2015 18:33:26 +0000 anbanan15 2205783@https://boards.hellobee.com/ <p>@SunriseMama: not sure if this will help you at all, but I wrote this post for the blog awhile back<br /> <a href="http://www.hellobee.com/2013/04/05/what-is-your-son-allergic-to/" rel="nofollow">http://www.hellobee.com/2013/04/05/what-is-your-son-allergic-to/</a></p> <p>If you need help with the FB groups let me know and I will wall you some links. </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2205779 Thu, 11 Jun 2015 18:27:58 +0000 anbanan15 2205779@https://boards.hellobee.com/ <p>@SunriseMama: I pretty much only use FB for the various support groups anymore. Huge resource, even more so when you are talking about the rare/uncommon conditions. There are FB groups for FPIES overall, then some by region.</p> <p>Let me see if I can find a pic of the patches once removed. Some were obvious fails at the 48 hrs mark when patches were removed. A few looked completely normal after patches were removed that ended up causing vomiting, diarrhea and blood when we trailed them. FPIES is diagnosed by symptoms and ruling out other things, so they might do a barium swallow or an upper/lower GI serious to look for reflux, IBD/IBS, EoE etc. Once those are rule out then they will make a diagnosis. Some kids have an elevated WBC post reaction, but it is not a conclusive test. My son also had severe reflux so we dealt with that on top of the FPIES. </p> <p>We were supposed to do patch with DD, but she has trouble with adhesives so we were a regencies about leaving them on for 48 hrs, since DS even reacted to them and didn't have a known issue. He was about 7 mo when tested. </p> [attach=482/15/npszwy.540x600.image.jpg] https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2205735 Thu, 11 Jun 2015 17:53:46 +0000 SunriseMama 2205735@https://boards.hellobee.com/ <p>@ANBANAN15 Wow, I'm so sorry your kids had reactions to so many foods. And you are so very dedicated to have stuck to the TED for so long- amazing! Glad to hear your son can eat everything now, and I hope you get answers soon on your daughter. When you had the atopy patch testing on your son, did he have completely negative results to foods and then go on to react to trials of those foods? When we had the oat/soy/dairy taken off her back, she was 100% clear- not even a trace of redness/rash that day or 2 days later. Curious if you know how doctors generally distinguish an FPIES reaction from reflux/overfeeding. I actually am not a big Facebook user, but maybe I'll join so I can go onto that group. Thank you so much for your response! </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2205697 Thu, 11 Jun 2015 16:59:44 +0000 anbanan15 2205697@https://boards.hellobee.com/ <p>My first had confirmed FPIES. He was a breastmilk reactor (we know now reacted from day 1) and I was in a TED of 3 to 15 foods over a year and completely vegan. We slowly added one good at a time, trailing for a week or more. For him, he would refuse certain foods and then if we pushed them they ended up being a fail, so we quickly learned to follow his cues and we would not trial anything he was not interested in. Around 30 mo he started to show interest in foods he previously wanted to avoid and, with the blessing of our allergist, we started to trial those foods and he began passing! I cannot remember exactly when we passed dairy/soy, but they were the last things we trailed and he has been eating a normal diet ever since (he was at least 3 when we trailed them). He is 4 now. He was a full on vomit to lethargic, blood in stools to everything reactor. </p> <p>DS did have RAST, SPT and APT done. RAST and SPT were negative, but APT were almost all positive. There is a high instance of false positives and negatives with patch, so we were told to take any positive as positive and trial any negative with caution. The majority of the negatives ended up being triggers as well. We found patch to be pretty accurate for him. </p> <p>My second had suspected FPIES, but she did not vomit, only had blood in her stools to everything. I ate the same 3 foods with her for almost a year. She started having blood in her stools at 1 mo and was also a breastmilk reactor. At 6 mo she we tried carrots and she reacted with bloody stools, so we pulled all solids until 11 mo when she showed interest in them again. At this point, almost overnight, she was able to tolerate everything. Again dairy/soy were the last things I added back to my diet and let her try, but at 18 mo she is eating a regular diet now. For her they never officially gave her an FPIES diagnosis but said it was "food protein induced something", but doesn't really matter because the treatment is the same, avoid the foods. We are actually looking at pancreatic insufficiency and/or malabsorption for her right now that may have been the cause of it all, or it could have been FPIES with a different presentation (she can tolerate everything, as in no more blood, but eats a ton and doesn't grow/gain. She also has a hematologic issue we are trying to determine if it is genetic or not). </p> <p>Are you in the FPIES FB groups? You will probably find better advice there. Where are you located? Finding an allergist that is up to date and familiar with FPIES is very helpful. Honestly, his advice does not seem that extreme and pretty accurate if it truly is FPIES, but I understand wanting a second opinion. Every little one is different as well. With her not actually reacting to dairy upon direct ingestion (or in your breastmilk) I could see trailing sooner than later. FWIW, literature usually states FPIES kiddos outgrow between ages 2-3, but from experience with other FPIES moms it's usually 4-6 years. </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2205692 Thu, 11 Jun 2015 16:52:13 +0000 MrsLonghorn 2205692@https://boards.hellobee.com/ <p>LO has a dairy intolerance via my breastmilk, so I am completely dairy-free. It only manifests as gas, mucus in his diapers, and "invisible" traces of blood....I realize it could be much worse! My pediatrician expects he will fully outgrow it by age 1. However, he also says we can trial whenever we want, however we want, since it isn't an allergy.</p> <p>LO is almost 9 months so I'm thinking of doing a trial soon. I've read conflicting recommendations about giving him yogurt directly vs. slowly adding it into my diet. Any opinions from this group?</p> <p>Give baby yogurt: upside is if he reacts, it will clear his system faster since we won't have to wait for it to clear through me too. Especially helpful since I pump and it would affect my freezer stash. Downside (very selfishly) is that he may react if he eats it directly but could be totally fine with the minimal amounts coming through breastmilk, and so I would continue to be dairy-free unnecessarily.</p> <p>Indirect: upside is that I get to eat dairy again! well, we'd start with cooked dairy...then yogurt...then cheese...then finally milk as the last step. downside is that if he still reacts, it will take longer to clear our systems, and I will have to figure out how to mark frozen milk as "contaminated".</p> <p>My gut says to give him a spoonful of yogurt (then an ounce, then two ounces...) and see what happens. But I'm really conflicted, so any experience is appreciated! </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2205674 Thu, 11 Jun 2015 16:38:18 +0000 SunriseMama 2205674@https://boards.hellobee.com/ <p>@anagram Thank you so much! Your GI doc sounds a lot like our allergist- so cautious that it unnecessarily limits the child and their family. The allergist asked at our last appt if my 14 month old was still on stage 1 purees, as if this wouldn't be any kind of issue. It's important to me to try many different textures/kind of foods on her while she's still young to hopefully avoid some pickiness later on. I like the idea of giving just a single spoonful of yogurt to see how she tolerates that. I'm so glad to hear your LO seems to be outgrowing her mspi!</p> <p>@morecoffee Interesting that your docs are suggesting to trial these foods rather than exclude them. Makes me even more wary of our allergist and more motivated to get a second opinion. Thank you so much!</p> <p>@raintreebee Glad to hear that your allergist gave you the okay to trial well before mine is telling us, and I'm so glad your son did well with it! I also thought that it was extreme that our allergist would limit us so much when the original vomiting could easily have been from her reflux combined with overfeeding or from her stomach just not being ready for the food. Thank you so much for your help! </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2205135 Thu, 11 Jun 2015 10:27:33 +0000 raintreebee 2205135@https://boards.hellobee.com/ <p>This seems insane. Our allergist was never sure whether my son had MSPI, but just as a precaution had us wait until a year to introduce dairy. I actually tried it around 9 months and it was fine. Also, since when is throwing up necessarily an allergy? My doctor said throwing up can happen when you introduce new foods and the babies stomachs are sensitive. </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2205122 Thu, 11 Jun 2015 10:20:40 +0000 MoreCoffee 2205122@https://boards.hellobee.com/ <p>You've already gotten a lot of great feedback but I'll also echo the advice to get a 2nd opinion. My DS was pretty classic MSPI (green bloody poops, reflux, terrible eczema); we saw a ped GI at 2 mos and determined through elimination diet that dairy was the only culprit. I was able to reintroduce dairy into my diet at around 6 mos with no issues for DS. Even with this history - we were STILL urged by our ped and ped GI to introduce allergenic foods to DS as early as possible. Unfortunately he did have bad reactions to both egg and dairy and had positive skin tests for both of those things at 10 mos old. But again - the allergist was optimistic and said we'd repeat the skin test at 18 mos and if the wheals were the same or smaller would move forward with trials for eggs in baked goods then powdered milk in baked goods. DS is now 2.5 and is able to eat baked eggs, baked milk and butter, and is scheduled to trial lightly baked dairy (mac n cheese or similar) this summer. All of this to say - it seems the medical community is trending more towards stepped ingestion trials as opposed to complete exclusion of allergenic foods. With your DDs history I would definitely seek out someone who would be willing to try another course of treatment! </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2205042 Thu, 11 Jun 2015 09:39:11 +0000 Anagram 2205042@https://boards.hellobee.com/ <p>@SunriseMama: I would just get some baby Benadryl and give a small piece of either a baked product with dairy (like a bread), or maybe a bite of yogurt or cheese and see what happens.</p> <p>I have had kind of the extreme opposite experience from you---my LO had/has MSPI and starting from about 9 months on, at every appointment, her pediatrician started urging me to try dairy and soy again. I didn't want to, because at that point, her last episode was only 3 months before and had caused SO MUCH blood in her stool and discomfort and eczema that I had a ton of mommy guilt.</p> <p>My pediatrician has also *never* referred me to an allergist, because she says studies show allergy tests will not show intolerances until after 2 years of age--only real allergies. She did refer us to a GI doctor, who was very extreme like your doctor and said I should only be feeding LO about 3 foods (and at that point, LO was already eating dozens of foods with no issues). So I never went back to the GI doctor.</p> <p>Anyway, finally around 15 months, we tried just 1 bite of yogurt at home--no "allergic" reactions like rash around mouth, difficulty breathing, throwing up, swelling of tongue, etc---but then LO was up all night screaming, had several green diarrhea poops the next day, and then developed a bad case of eczema overnight.</p> <p>So I'd stayed off it since---even though my Ped keeps insisting I keep trying. Just a week ago, now that LO is 22 months old, my mom accidentally gave a pouch with yogurt in it and then called me in a panic. My little sister has a severe nut allergy, so my mom has experience with allergies, and I just told her keep the Benadryl nearby and watch for any signs of anything.</p> <p>Long story short--LO had NO signs of pain--no gassiness, no fussiness that night, no weird poops......except she once again developed a bad eczema flare up overnight, after her skin had been clear for months.</p> <p>So I think she's finally slowly growing out of it, but we aren't there quite yet. I plan to trial a few more things slowly and see what happens with her skin, etc.</p> <p>The bottom line is that--you are the parent. Take precautions, but also listen to your gut. Don't hesitate to get a second opinion. </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2205022 Thu, 11 Jun 2015 09:25:27 +0000 SunriseMama 2205022@https://boards.hellobee.com/ <p>Thank you all SO MUCH for the help! I really appreciate it!</p> <p>@abbydabbydoodlebug Thank you! Very helpful to know that your pedi allowed you to do a trial at 7 months. My daughter doesn't even officially have mspi, so I'm not sure why we are being told to wait until 5-8 years</p> <p>@mamaof2 Thank you! Also, I'm so happy for you that your son outgrew his allergy!</p> <p>@adira Thank you for your long response! We are fairly sure she does not have an ige allergy to milk/soy since she was negative on the skin prick test. FPIES doesn't have an actual test unfortunately, though the patch test (atopy) is being studied, though the allergist ignored this on her. Glad to know that others think this guy is being ridiculous too! Best of luck with your son- I'm so sorry to hear he is so allergic to milk :(</p> <p>@catlady Thank you so much for your response and happy ending! How old was your LO when she had the vomiting to eggs? You didn't get a skin prick test until quite awhile later, right? Was it the blood in the stool that made your ped suspect mspi and not an ige allergy? So great to hear that other allergists are not as conservative as ours and that another allergist may let us trial sooner! Thank you again! </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2204970 Thu, 11 Jun 2015 08:50:07 +0000 catlady 2204970@https://boards.hellobee.com/ <p>Your allergist sounds crazy. I'll tell you our story (which ends well!). We suspected MSPI/FPIES at around 8 or 10 weeks, and it was confirmed when they found blood in LO's stool. LO was EBF so over the next few months, I eliminated a huge number of foods from my diet and LO seemed to get much better but we were never able to get her to have a negative test for blood in stool. When we started introducing foods at 6 months, we avoided all the foods on my list at first, but then slowly started introducing a few. She vomited on several occasions after eating eggs, so we got a referral for allergy tests and were told to stop introducing any new foods to her directly, however at 10 months, the pediatrician let me introduce some of my eliminated foods back into my own diet. </p> <p>By 14 months, she was still BFing and I had brought back everything except dairy, and at that point we finally saw the allergist and LO tested negative on all the suspect foods. Both the allergist and the pediatrician gave us the green light to introduce dairy back into my diet and to slowly introduce all the foods into LO's diet. She did great and never had a single reaction after that. </p> <p>Long story short, we had a much longer history with food intolerances than your LO and we were able to introduce all foods successfully and with no reaction by around 15-16 months. </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2204957 Thu, 11 Jun 2015 08:40:45 +0000 Adira 2204957@https://boards.hellobee.com/ <p>This makes absolutely NO sense to me, but I know nothing about FPIES...</p> <p>Let me get this straight - you've been ingesting dairy/soy just fine and breastfeeding and your LO hasn't had a negative reaction to that at all. Your allergist has done a skin prick test to test for milk and soy allergies and they've come up negative. Why the F wouldn't he allow you to start trying milk or soy for her???</p> <p>It's my understanding that skin prick tests can give you false POSITIVES, but not false negatives (someone please correct me if this is inaccurate). If your daughter has no reaction to milk and soy and YOU'VE been able to eat it and breastfeed, it seems unlikely that she's actually MSPI or even allergic. Waiting years doesn't make any sense to me. What is the reason for that?? Why do the skin prick tests if he's just going to disregard them? Has your daughter had a blood test to check for allergies?</p> <p>My son is extremely allergic to milk. He's had an anaphylactic reaction, tested positive to a skin prick test, AND tested positive via a milk test. And my allergist is still planning on having us trial him with milk when he's 3.</p> <p>I would definitely definitely get another opinion! Your allergist sounds ridiculous to me and is making absolutely no sense (in my opinion)! </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2204952 Thu, 11 Jun 2015 08:39:09 +0000 Mamaof2 2204952@https://boards.hellobee.com/ <p>I would get a 2nd opinion - that sounds extreme</p> <p>DS broke out in hives after ingesting milk at 9 months - went to allergist and she said no dairy until age 2. At age2 they did a food challenge at the hospital - took an hour or so - he passed - we went home and added back in dairy and he was fine </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2204919 Thu, 11 Jun 2015 08:25:28 +0000 abbydabbydoodlebug 2204919@https://boards.hellobee.com/ <p>Oh wow! I'm not sure I can bet of much help, but I wanted to bump this for you. </p> <p>My daughter was mspi and my pedi said we could try dairy at 6 months with me, so she'd hey it through my BM. I did yogurt, then cheese, then ice cream and milk. She did fine, so we did the same order but directly into her. This was more around 7 months old. She had no problems since. </p> <p>I hope you get some answers! </p> https://boards.hellobee.com/topic/mspifpies-mamas-when-did-you-trial-your-kids-on-dairysoy#post-2204650 Wed, 10 Jun 2015 21:40:16 +0000 SunriseMama 2204650@https://boards.hellobee.com/ <p>Hi everyone, this is my first post. I've read and loved HelloBee for over a year now but am usually too shy to comment. </p> <p>Short question: For any moms who have kids with MSPI or FPIES, how old was your child when your allergist/ped allowed you to trial the child on soy and dairy?</p> <p>Long, LONG backstory (sorry!): I started solids with my daughter, H, when she was 6 months old. We did bananas, avocado, peas, pears, and baby oat cereal without issue for several weeks. I would feed her solids some days and not other days. I followed the theory that babies stop eating when they're full, so for any meal of solids, I'd keep feeding her until she turned her head or closed her mouth to the spoon. One Saturday when she was 7.5 months old, she refused to breastfeed immediately before breakfast, but I decided to feed her solids anyway. She ate a TON: an entire pouch of spinach/pear/pea, some avocado, and about 1/4-1/2 cup (total volume) of baby oatmeal mixed with my expressed milk. I nursed her down for a nap, placed her in her swiftly moving swing, and left. She woke about two hours later, and I picked her up. She opened her mouth and puked all over me. She puked 4-5 more times, and she was upset by the vomiting, but it wasn't forceful or projectile. After she was done, she was slightly lethargic but otherwise happy and normal. An advice nurse at the pediatric urgent care told me that once they start vomiting, they usually keep going until their stomach is emptied. I told my ped about this vomiting, and she recommended no solids for a week and then to try one single food again. So the next Saturday, I fed her some more oatmeal, maybe 1/8 cup total, again mixed with my freshly expressed milk, nursed her to sleep, put her in her swing, picked her up after her 2 hour nap, and vomit again. She vomited another couple times, but it was over much quicker this time. The ped then referred us to an allergist, who said she probably had reflux but could possibly have fpies to oats. My daughter had a skin prick test and was negative on everything (milk, soy, oats, egg, etc.) He advised us to slowly work up from a teaspoon of each type of food and to trial over 3-5 days. We scheduled a follow-up for 3 months later. </p> <p>In that 3 months, I was very slow about every food I introduced, and she handled everything fine. At that appointment, when she was 10 months old, I asked if we could try oats again, and he said he'd rather wait and that he'd like us to wait until a year old to try her on milk or soy. We scheduled a follow-up at a year. She continued to do well with every food we tried.</p> <p>At the year follow-up, I was really looking forward to being able to trial her on dairy and soy. She was dropping in percentiles, and the ped had advised us to give her butter since she wouldn't eat any food I added oil to. At this point, she was doing great eating almond butter, brown rice, avocado, coconut, egg, strawberries, green beans, peas, many other fruits and veggies, and turkey. I also wanted to stop with the 3-5 day trials with non-highly-allergenic foods because it was taking so long to add a new food. I wanted her to be able to eat table foods with the family. The allergist said no, no trialing her on dairy/soy, but that he'd do a patch test on her. Three separate visits and $150 in co-pays later, we go back to see that she had ZERO reaction to soy, dairy, or oats. I was excited again, thinking I could start doing slow trials on these foods. Nope, said the allergist, that patch test doesn't really mean anything. Let's wait until she is 5-8 YEARS old before we do dairy/soy. And also, you need to start doing trials on other new foods for an entire week. After much questioning on this from me, he said he would do a trial in-office on her on dairy/soy when she was 3yo if I insisted on it but that he'd make me sign a bunch of paperwork that says she could die about 5 times in it. He said we'd also need to stay at the office for 8 hours after ingestion. I was flabbergasted. She hadn't had any kind of reaction to food whatsoever since her original vomiting episodes at 7 months. She was now 14 months and eating tons of different foods! Babies who do have FPIES to oats have a 50% chance of reacting to dairy/soy, but he originally thought she probably had reflux! She's never directly eaten/drank any dairy/soy, but she also never had ANY typical intolerance reaction, like blood in the stool or congestion, to the copious amounts of dairy/soy I ate while nursing her. She did have big-time reflux as a small baby (I couldn't even lie her flat for quick diaper changes), but that stopped completely by 9 months.</p> <p>I want to get a second opinion, but I also want to know if anyone else's doctor recommended waiting SO LONG to trial dairy/soy and if they were instructed to do an in-office trial of 8 hours when they did. My baby is now 14.5 months. Thank you so much for any input! </p>