https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Wed, 08 Apr 2026 22:27:10 +0000 https://boards.hellobee.com/topic/formula-question-for-mspi-or-fpies-mamas#post-2250744 Fri, 31 Jul 2015 06:02:52 +0000 ladybee 2250744@https://boards.hellobee.com/ <p>@Mrs. Deer: DS was on Neocate till 11 months, then we did testing and be passed soy so we put him on Similac until 13 months. Then we switched to Almond milk. At 16 months we did a milk challenge because I had a "feeling" (weird I know) and he passed. We started introducing milk food then. I just transitioned him to cows milk at 21 months because it still terrified me. </p> <p>We never had insurance coverage for formula so we paid out of pocket for Neocate from 3 months on. I'd talk to your GI or allergist. Our allergist was extremely helpful. Both provided us with their dietician (they both used the same one). </p> https://boards.hellobee.com/topic/formula-question-for-mspi-or-fpies-mamas#post-2250706 Fri, 31 Jul 2015 04:06:50 +0000 SugarplumsMom 2250706@https://boards.hellobee.com/ <p>- how/when did you transition off formula and what did you use instead?</p> <p>I think we transitioned her off at 1 year. It's when her prescription for Neocate was no longer covered. </p> <p>- if you used an elemental formula, did you ever transition to another formula or use that the whole time?</p> <p>We struggled with various formulas beforehand and nothing seemed to work until her doctors prescribed Neocate. They did give us a Neocate Junior (porridge) once she was off of the formula, but since she was already a year old, formula just wasn't an option. LO hated the porridge.</p> <p>LO loved her bottle and we had her on Almond Milk. She was weaning at the time (late) so we weren't too concerned about not getting enough nutrition. </p> https://boards.hellobee.com/topic/formula-question-for-mspi-or-fpies-mamas#post-2250694 Fri, 31 Jul 2015 02:43:54 +0000 regberadaisy 2250694@https://boards.hellobee.com/ <p>I wonder if you can try calling your new insurance and seeing if with a doctor and GI note they'll be willing to cover it? Or even just a portion of it? Knowing your struggles I would be very unwilling to switch too! Good luck! </p> https://boards.hellobee.com/topic/formula-question-for-mspi-or-fpies-mamas#post-2250649 Thu, 30 Jul 2015 23:36:59 +0000 Mrs. Deer 2250649@https://boards.hellobee.com/ <p>Thanks ladies! I think it'd be good to get our GI doctor involved too. We just moved and are switching insurance in a few days so I just need to get that sorted.</p> <p>@MrsF: that's so awesome you were able to jump into dairy like that! We tried yogurt with my first around 9-10 months and after two days she started vomiting. :( she can tolerate it in small amounts now at 2.5, but anything more and she gets eczema. </p> https://boards.hellobee.com/topic/formula-question-for-mspi-or-fpies-mamas#post-2250583 Thu, 30 Jul 2015 21:57:17 +0000 Ash 2250583@https://boards.hellobee.com/ <p>My son was on Neocate for a year and then we transitioned back to nutramigen per our gi's request before he had his oral dairy challenge at 15 months. </p> https://boards.hellobee.com/topic/formula-question-for-mspi-or-fpies-mamas#post-2250575 Thu, 30 Jul 2015 21:50:43 +0000 MrsF 2250575@https://boards.hellobee.com/ <p>My LO tolerated Nutramigen so we never went to an elemental, but we kept her on that until a year. We tried cows milk yogurt at 11 months and she did well (that was what our GI recommended doing) so we added dairy in to her diet and then switched cold turkey to WCM at 1 year. </p> <p>Much to my amazement our insurance covered the Nutramigen. If they hadn't I probably would have been more motivated to experiment. </p> https://boards.hellobee.com/topic/formula-question-for-mspi-or-fpies-mamas#post-2250533 Thu, 30 Jul 2015 21:25:13 +0000 Mrs. Deer 2250533@https://boards.hellobee.com/ <p>If you're able to answer any of these questions I would so appreciate it! I breastfed my first so this is new for me with navigating formula and protein intolerances.</p> <p>- how/when did you transition off formula and what did you use instead?</p> <p>- if you used an elemental formula, did you ever transition to another formula or use that the whole time?</p> <p>We've been using Elecare but it won't be covered by our insurance starting August 1st. I'm debating between paying a ton to use it a few more months (she's 9 months) but then where do I go from there? I think there's an Elecare Junior? Or I could see if she'll tolerate Alimentum since it's cheaper. I just hate to mess with a good thing. I breastfed my first for 18 months so she was well established on foods and didn't need a milk alternative. </p> <p>Thank you ladies! </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2224928 Thu, 02 Jul 2015 11:08:39 +0000 anbanan15 2224928@https://boards.hellobee.com/ <p>@Mrs. Pinata: Parch testing isn't always accurate so it may not give you the results you are looking for. For DS it was highly accurate and helped guide early food trials but for many others it was a complete bust. Our allergist will not do patch testing without skin testing first to check for IgE allergies (which is more accurate for those compared to patch for non-IgE allergies). Even with all the testing it is still just trial and error.</p> <p>Here is a link to the FPIES food survey. You can sort of pick foods from here based on others responses and what seems to be a problem for most kids. A mom put this together and there are links to the surgery to both take and view results. <a href="http://fpies.bofferding.net/fpies-food-survey.html" rel="nofollow">http://fpies.bofferding.net/fpies-food-survey.html</a></p> <p>Some have also had luck using the food allergen scale (page 4). The items at the top of each column are more common in IgE allergies. The ones at the bottom are thought to be the least likely to be a trigger. <a href="http://www.allergynutrition.com/wp-content/uploads/2013/09/Foods-Most-Frequently-Associated-with-Allergy.pdf" rel="nofollow">http://www.allergynutrition.com/wp-content/uploads/2013/09/Foods-Most-Frequently-Associated-with-Allergy.pdf</a></p> <p>I wish my link to the botanical families still worked, but basically if you google botanical families you can use those lists to guide trials too. For some if a child fails one food in a family they would also fail others or the entire botanical family. It can help draw connections and you can see which foods are related to others.</p> <p>The FPIES Foundation your pedi sent you is a good place to start. They have a support forum on there as well. The International FPIES Association (<a href="http://www.fpies.org" rel="nofollow">http://www.fpies.org</a>) is also another good one. They are the ones responsible for getting an ICD-9 code so kids can have a real medical dx of FPIES now. in addition to the FB groups I mentioned (there are a bunch and also ones specific to certain regions) there is also a group on BBC that might be helpful for you too. </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2224749 Thu, 02 Jul 2015 10:08:51 +0000 Mrs. Pinata 2224749@https://boards.hellobee.com/ <p>@anbanan15: I had to look up a lot of that because I didn't know what it was. :) But, it looks like it was a lot of allergy and food intolerance testing. Our insurance isn't stellar so I'm nervous about how much that would all cost for us. But, I think it would be a good idea to do some of that so we would know what we definitely shouldn't expose her to! </p> <p>I would love to see the link you referenced. I'm definitely going to need to do some more internet research. My pedi sent me this website and I need to read up more. <a href="http://fpiesfoundation.org/about-fpies-3/" rel="nofollow">http://fpiesfoundation.org/about-fpies-3/</a> </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2224136 Wed, 01 Jul 2015 16:50:16 +0000 anbanan15 2224136@https://boards.hellobee.com/ <p>@Mrs. Pinata: with DS our official dx came after trying to start solids with rice cereal. He projectile vomited 2 hrs after, became lethargic and had bloody, mucus filled stools. Classic FPIES. We had been working with a GI since a young age, and know now he was a BM reactor since birth, but after failing rice cereal our local GI sent us to an allergist at a children's hospital who is known for FPIES. He has RAST allergy testing (negative), skin prick testing (SPT, negative) and atopic patch testing (APT, 17 foods with most positive and a few negative on APT turned out to be fails when we trailed) done. We eventually switched to GI there as well (about a year or so later). R/o other things and with RAST and SPT negative (expected in FPIES) and having the classic symptoms they dx him right away. When my second showed similar symptoms (bloody stools) at 1 mo, we sought out the same team that we used with DS at the children's hospital. Since she didn't have the vomiting piece they didn't officially dx her FPIES but said she had "food protein induced something" and it didn't really matter what the name because the treatment, avoiding the food, was the same. She had SPT done, but is sensative to adhesives so we did not do APT. </p> <p>There are a few things that can help you guide food trials and help you pick foods to try. While not fool proof, since every little one with FPIES is so different, they can be helpful. I will try to link you when I get home. Also check out the FPIES FB groups. They are an invaluable resource and make you feel like your not alone in this small community. </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2224133 Wed, 01 Jul 2015 16:46:57 +0000 brownie 2224133@https://boards.hellobee.com/ <p>@Mrs. Pinata: my ped said "yup sounds like fpies". At our appointment yesterday. It can also take weeks for the intestines to heal after damage so the bad poops etc may stay for a while. Our reactions were exactly a week ago and she just stopped mucous poos yesterday but they were still very green. </p> <p>She couldn't tell me what the offending product was. Just that I had a good plan to move forward. </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2224074 Wed, 01 Jul 2015 15:43:22 +0000 Mrs. Pinata 2224074@https://boards.hellobee.com/ <p>@Ash: @anbanan15: @catlady: @brownie:<br /> Thank you all so much for sharing your experiences! This is all exactly what I needed to hear! It's so good to hear we're not the only ones. </p> <p>How do they decide for sure to give a baby a FPIES diagnosis? Just if they react strongly to that stuff? We haven't given Sweet P any solid food since last Friday and she still had a very loose stool today. :( Last week we ignorantly did sweet potatoes, squash and bananas before we suspected FPIES at all, so I'm thinking those did quite a number on her. </p> <p>I'm so grateful we have a pedi that is familiar with it because we are going to go SLOWLY with solids this time. We actually switched to her around 3 months when our other pediatrician was just telling us "some babies are fussier than others" and our new pedi told us to try dairy free the first appointment we had with her and it's amazing how different of a baby she is now! It makes me sad that the solids temporarily turn her into her "pre-dairy-free" self. </p> <p>@anbanan15: I'm so impressed with your commitment to breastfeeding and sticking to 3 foods! You must have been hungry all the time! </p> <p>Thanks again all! :) </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2223630 Wed, 01 Jul 2015 09:52:58 +0000 catlady 2223630@https://boards.hellobee.com/ <p>@Ash: Thanks, yes we are lucky because our LO ended up growing out of all her issues by 14 or 15 months (we also had allergy tests done at that time that were all negative). </p> <p>Sorry for derailing this thread! </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2223613 Wed, 01 Jul 2015 09:38:03 +0000 Ash 2223613@https://boards.hellobee.com/ <p>@catlady: I'm sorry! I asked for a gi referral because our pedi was clueless - fpies is so new that many don't know about it. I hope things have improved for your LO. :heart: </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2223610 Wed, 01 Jul 2015 09:33:25 +0000 catlady 2223610@https://boards.hellobee.com/ <p>@Ash: You're totally right (sorry, should have done some googling before replying). I wish I had known this. I hadn't even heard of FPIES until my LO and I were done with elimination diets so I'm not too informed. But honestly this makes me a little angry at my pediatrician. We were never (never!) able to get my LO's stool to be free of blood in her first year. Because I eliminated so many things from my diet, rice was a huge staple for me. No one ever suggested that I eliminate it. But my pediatrician made me stay off of corn, eggs, peanuts, and tree nuts for almost a full year, even though I was certain my LO wasn't reacting to them. SIGH. </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2223605 Wed, 01 Jul 2015 09:24:24 +0000 Ash 2223605@https://boards.hellobee.com/ <p>@catlady: her pedi's list is pretty right on for fpies :wink: </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2223505 Wed, 01 Jul 2015 07:52:34 +0000 catlady 2223505@https://boards.hellobee.com/ <p>@Mrs. Pinata: That list from your pediatrician is interesting to me because some of those foods were the ones that our pediatrician said were the least likely to cause problems (sweet potatoes, squash, and rice, for example). Aside from the obvious dairy and soy, ours told us the most likely to cause problems would be wheat, beef, eggs, corn, citrus, strawberries, and tomatoes. Granted, my LO didn't have a FPIES diagnosis, just general sensitivities to many things. Seems like there are no real consistent recommendations for this type of thing. :/ </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2223500 Wed, 01 Jul 2015 07:44:51 +0000 anbanan15 2223500@https://boards.hellobee.com/ <p>@brownie: Hope you can figure them out! </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2223390 Tue, 30 Jun 2015 22:59:39 +0000 brownie 2223390@https://boards.hellobee.com/ <p>First baby was MSPI and is still intolerant to soy protein at 4 years old. Other solids were fine.</p> <p>Baby no 2 is on the track for an fpies diagnosis. I went into the ped today for it on her chart. Two weeks ago I are a few things in large quantity and she spent two days being horrid. And then the mucous poops. So I have dropped 4 more items from my diet. For solids, we will do baby led weaning again but with "safe" foods. Once I figure out what all of those are. </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2223378 Tue, 30 Jun 2015 21:58:59 +0000 anbanan15 2223378@https://boards.hellobee.com/ <p>My first had confirmed FPIES. He wasn't able to start/tolerate solids until around 14 mo. Carrots were his first safe food. He was EBF until he self weaned at 21 mo and during the time from 8 mo until 21 mo I was only able to go from 3-15 foods and being completely vegan because he could not tolerate any animal products. We did very slow trials, first in my diet then in his, which took a few weeks for each food and then if he had a reaction we had to take a few weeks of gut rest. He started to outgrow it around 2.5 and now eats a completely normal diet at 4.</p> <p>My second had suspected FPIES but presented differently than my son. She did not have the projectile vomiting but did have the bloody stools like he did. For her I was only able to eat 3 foods for nearly a year. Everything I tried caused bloody stools. We tried solids at 6 mo with one of my safe foods and I lost one of the foods. We found another she could tolerate in my diet, but didn't try solids again until she started sneaking them at 11 mo. At that time she somehow was able to tolerate everything and has been since (19 mo now). </p> <p>One thing I have learned is there are no "rules" to FPIES. What works for some may not work for another. Anything can potentially be an FPIES trigger so you really need to take trials slow and not rush them, which can be hard when LO wants to eat. Also be sure to reestablish a baseline after fails. The good thing about FPIES is your LO should outgrow it at some point, it's just when and getting through the worst parts that are so tough. </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2223371 Tue, 30 Jun 2015 21:39:19 +0000 Ash 2223371@https://boards.hellobee.com/ <p>Yep! Dairy, bananas and rice were our triggers and even at 19 months, we avoid squash and sweet potato (and rice and bananas still).<br /> Corn was a huge pass for us! And since we avoided dairy until he passed the oral challenge at 15 months, we did almond milk in place (also yogurts/flours). </p> <p>Not sure how helpful I've been but feel free to pm me with questions. It's easy to feel alone in all of this. </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2223348 Tue, 30 Jun 2015 20:52:21 +0000 Mrs. Pinata 2223348@https://boards.hellobee.com/ <p>Our pediatrician that the most common allergens with FPIES are cow milk protein, soy protein, rice, oats, peas, green beans, sweet potatoes and squash. So, I think we're going to avoid those for now. I'm thinking when we try again, avocado and bananas would be good choices.</p> <p>Thanks for sharing your experiences! </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2222738 Tue, 30 Jun 2015 12:06:45 +0000 catlady 2222738@https://boards.hellobee.com/ <p>My LO wasn't officially diagnosed with FPIES, but she was definitely MSPI and I was also off nuts, corn, eggs, and other stuff. She didn't have trouble with any foods that we introduced early except possibly eggs (although months later, she had an egg allergy test that came back negative, and now she eats them with no problem). Our earliest foods were sweet potato, avocado, banana, peas, peaches, apple sauce, mushed carrots, and plain ground chicken/turkey. We basically followed the guidelines here (and just ignored the stuff that I was eliminating from my own diet):<br /> <a href="http://wholesomebabyfood.momtastic.com/solid-foods.htm" rel="nofollow">http://wholesomebabyfood.momtastic.com/solid-foods.htm</a></p> <p>Edited to add: We held off on grains (rice, oatmeal, etc) for a couple months just in case. We only gave her baby cereal around 8 or 9 months and she did fine with those at that point. </p> https://boards.hellobee.com/topic/did-your-lo-have-fpies#post-2222707 Tue, 30 Jun 2015 11:54:40 +0000 Mrs. Pinata 2222707@https://boards.hellobee.com/ <p>So, Sweet P has a diary intolerance and is on Alimentum and breastmilk from dairy-free donors. I've suspected she might have other food intolerances as well because we can never do more than 50% of her daily ounces from breastmilk or she gets fussy (and there's obviously no way to tell what she might be sensitive to because it's donor milk).</p> <p>We have tried to start solid food twice, and both times she has been fussy, up more and night, and pooped more often. Granted, I didn't go as slowly as I should have because she was so in love with the foods and gobbled them up. </p> <p>Anyway, she is now 6 months old, but our last try gave her a couple days of diarrhea (and a handful of huge spit ups) and so we are going to hold off a few weeks (at least) to try again. She doesn't officially have a diagnosis of FPIES, but our pediatrician suspects it.</p> <p>If your LO had FPIES, did they also have a hard time starting solids? What did they handle well? When we return to it at 7 months I'd like to do one food at a time, and foods that others with FPIES have had success with. I'd love to hear what has worked for other moms.</p> <p>TIA! </p> https://boards.hellobee.com/topic/fpies-mspi-gerd-amp-other-allergiesintolerances-or-feeding-issues#post-142779 Mon, 30 Apr 2012 19:05:58 +0000 anbanan15 142779@https://boards.hellobee.com/ <p>@chopsuey119: I hope so! Most of what we learned early on was from other mama's so I'd love to help some HB families. It can feel like you are alone or insane sometimes when your dealing with weird allergies. </p> https://boards.hellobee.com/topic/fpies-mspi-gerd-amp-other-allergiesintolerances-or-feeding-issues#post-142203 Mon, 30 Apr 2012 10:13:57 +0000 chopsuey 142203@https://boards.hellobee.com/ <p>Wow! You're awesome for sacrificing food for your LO! Luckily we didn't have to deal with any intolerances, but I'm sure lots of people will find this thread helpful! Thanks for sharing! </p> https://boards.hellobee.com/topic/fpies-mspi-gerd-amp-other-allergiesintolerances-or-feeding-issues#post-142014 Mon, 30 Apr 2012 08:18:14 +0000 anbanan15 142014@https://boards.hellobee.com/ <p>I thought it would be nice to have a thread in order to compile a list of resources and other advice for those of us dealing with LO's who have some form of food allergies/intolerances, FPIES, GERD, EoE, malabsorption, or other GI issues. </p> <p>A few sites and organizations I have found to be helpful (will add more later):</p> <p>The FPIES Foundation: <a href="http://www.thefpiesfoundation.org/" rel="nofollow">http://www.thefpiesfoundation.org/</a> (there is a forum on site and also a list of resource to take to your doctor, starting a food journal etc)</p> <p>International Association of Food Protein Enterocolities (IAFFPE): <a href="http://www.iaffpe.org/" rel="nofollow">http://www.iaffpe.org/</a> (A great source for ER letters, school letters and other handouts and other information)</p> <p>The FPIES Food Survey: This was developed by a mom in order to compile a list of foods and their reactions to help better guide food trials. The results can be found at <a href="https://spreadsheets.google.com/spreadsheet/viewanalytics?formkey=dEZMYWh2ZXdhZVQyQ3UtbUFMWFgybXc6MQ" rel="nofollow">https://spreadsheets.google.com/spreadsheet/viewanalytics?formkey=dEZMYWh2ZXdhZVQyQ3UtbUFMWFgybXc6MQ</a> and to take the survey please visit <a href="http://fpies.bofferding.net/fpies-food-survey.html" rel="nofollow">http://fpies.bofferding.net/fpies-food-survey.html</a>.</p> <p>Facebook is also a great resource to connect with other families and to learn about doctors in your area. Many mom's also have their own personal blogs that share their journey, food trials, reaction stories and recipes so don't forget to stop by google and check them out.</p> <p>-----<br /> A little background and introduction to our story: I'm a EBFing mom to a now toddler, but have been dealing with allergy/intolerance issues since birth. I knew from only a few hours after L&amp;D that DS was at least intolerant to the dairy in my diet. Things kept getting worse, but because of his good growth, my claims were ignored and it wasn't until DS was 2 months, with visible blood in his stools, that we had an MSPI diagnosis. I started the long road of an elimination diet (too many things to list but I will if asked) and at 6.5 months he was officially diagnosed with FPIES after the "classic" rice reaction upon introducing solids at 6 months. After some skin prick testing and patch testing (feel free to ask questions about either of these!!) I eliminated more foods from my diet and on 01/02/12 I officially went on a 3 food TED (total elimination diet). DS is currently tolerating 5 foods and I'm up to 7 foods! He recently turned 1 and we are still BFing. Please feel free to ask any questions! I'd be happy to share anything I've learned so far on this journey. </p>