Joy. is here to help us answer questions we have about our babies & what we can do for them. We can ask about Ubiome & their stool sampling & even breastmilk sampling? Joy, can you start at the beginning?
Joy: My daughter is almost 4, so older than this group. I took Garden of Life Raw Prenatal, fish oil, and some probiotics in pregnancy. I added femdophilus at the end after I tested positive for GBS. I have done all this on my own, with the help of many Facebook groups like this one. I’m currently pregnant with number 2.
I was active duty military and gave birth in a military hospital, my wishes were overruled by the military doctors. Labor was long and difficult, no epidural. Cord clamping was not delayed, my daughter was born blue and not breathing or moving. I had two rounds of IV antibiotics for the GBS. She got vitamin K injection and eye drops, but Hep B was delayed until 7 days old. She had an acute Food Protein-Induced Enterocolitis Syndrome reaction via breastmilk at 5 hours old. She was taken to the NICU for “apparent life threatening event”, stomach pumped, IV fluids for 24 hours, then given Similac (I was still waiting for a blood transfusion and trying to pump colostrum for her, with little success).
At 7 days we were sent home with zantec and an incorrect diagnosis of GERD. So basically everything went wrong. This is what you do not want for a delivery. I did take my probiotics and an infant probiotics powder with my to the hospital, but I only got to use the infant powder once before she was taken to the NICU. At 3 weeks I figured out I needed to change my diet, cut dairy and soy. Both my probiotics and the infant one had dairy and/or soy, so I stopped them. About 5 months I finally found an infant powder that was dairy and soy free. 7 months we finally received the correct diagnosis. But I stopped the infant probiotic around 9 months when we discovered GAPS, because it had maltodextrin which isn’t allowed.
I learned about GutPro (infant version didn’t exist yet) and ordered and started that. When I stopped breastfeeding at 15 months, she transitioned to raw camel milk yogurt which I made using MegaFlora as the starter. At 2.5yrs we had an opportunity to participate in the American Gut project which showed her gut was 80% proteobacteria, and 65% of her entire gut was a single genus: Stenotrophomonas. Ubiome launched, offering microbiome sequencing faster and cheaper. Just after age 3 she got an ear infection which persisted, and we requested an antibiotic known to kill Stenotrophomonas. We flooded her body with both oral probiotics and probiotic enemas. We used 10 different brands of probiotics and then retested. Her proteobacteria is now around 2% and Stenotrophomonas is gone, and has remained gone.
So obviously I’m trying to do a lot different this time, and part of my plan this time is to do an initial test of baby’s gut microbiome at 7 days old. I will repeat testing at least every 6 months, and anytime we need to make a major intervention. I’ll be storing a stool sample to recolonize myself, because I’m going to have IV antibiotics again
infantreflux: How did you get back to breast milk when in the hospital they put baby on formula? And how do you know that it was not reflux? My baby wound up in the NICU from apnea and instead of saying was FPIES to my milk, they realized that it was severe reflux/GERD. I did the Dr. Sears total elimination diet and then realized that it my son’s case it was not an allergy or intolerance via my milk; it was actually immature LES and he eventually outgrew it at about 12 months.
Joy: in the NICU they limited me to 20 minutes of breastfeeding every 3 hours. Then I would pump and they would give whatever I pumped at the end of the next breastfeeding session, followed by formula. So when we went home I just let her breastfeed more. We found a lip tie at 12 months, which was corrected at 13 months, that probably contributed to her needing long nursing sessions to get full.
infantreflux: so it maybe wasn’t FPIES?
Joy: oh she definitely has FPIES. Trace exposure to baked cow’s milk just after her third birthday still causes vomiting. We had compounded zofran on hand at home, so we were able to prevent the shock portion and an ER trip. We did have to go to the ER at 15 months for exposure to a microscopic splatter of butter. She experiences chronic type reactions to many foods (abdominal pain, reflux, malabsorption, weight loss, diarrhea, bleeding rash on bottom, skill regression, metabolic acidosis, hypoglycemia, intestinal bleeding). She has 1 confirmed acute trigger, and over 30 chronic food triggers, plus more non-food chronic triggers (for example she can’t have any food which is packaged in cardboard or paper), and 1 IgE allergy.
infantreflux: gotcha! So I take it you did the total elimination diet then?
Joy: initially I did, but I was able to eat everything except dairy and soy. Then when she started solids, I had to cut each food she reacted to, and then she started reacting to soy oil (which is allowed in foods labeled soy free). I was avoiding about 15 ingredients by the time I stopped breastfeeding.
infantreflux: how can one work w/ Ubiome. Who helps interpret & then assists w/ a plan?
Joy: Ubiome provides the raw data, and limited interpretation to everyone through their website. But basically I did a lot of reading on what shows up in my daughter’s gut. So the first sample, since there was lots of Stenotrophomonas, I focused my research on that, using pubmed and google scholar.
infantreflux: and you had to wait until the need for antibiotics to find one or to treat/address this issue?
Joy: I knew which antibiotics were going to kill it, but no one would prescribe any of them just for her gut. So when the dr said she needed antibiotics for her ears, I already knew what to ask for.
infantreflux: good grief! I wonder if a MAPs dr would have? …
infantreflux: Ok Joy, about testing other things in addition to stool testing; let’s start with breast milk?
Joy: I no longer have breastmilk available to test, so I tested raw camel milk. I just rubbed the swab from Ubiome on the residue left on the inside of the storage cap for the bottle.
You could test homemade ferments too. Just use a clean dropper to get a drop of the liquid and then put the drop on the swab. Really you can test just about anything. The real limit is your funds available for testing.
Also, you don’t have to use the kits the way they are sold. For example you can buy the 3 pack time lapse, and use each test for a different family member on the same day. The only caveat is if you want to test something dry (a solid surface or someone who doesn’t have much vaginal secretions) then you need their special sterile water.
Do make sure to create a separate account for each family member you want to test.
infantreflux: That’s it. I’m doing a video chat w/ you one day! Help the reflux mamas!
infantreflux: Joy, please explain why you would test the camel milk? And why the ferments? And how about mamas testing formula? And breastmilk? What answers will testing give?
Joy: Formula generally won’t have bacteria (the exception being a few brands that add a specific strain like Gerber Soothe or Neocate Syneo). Testing the milk source (camel or breastmilk) lets you know what bacteria the child is getting. If the breastmilk is low on key probiotics, then mom could increase her supplements. I tested the camel milk to make sure it wasn’t contributing anything I didn’t want in my daughter’s gut.
For ferments, every batch is a little different, and it has been long assumed that you don’t know what bacteria you are getting, but they are good for you. Not it’s possible to actually test what bacteria grow in your homemade ferments 🙂. Of course they grow yeasts as well, which won’t show up. And milk contains prebiotics that won’t show up on Ubiome.
infantreflux: ps: I’m going to gather this info & put on infantreflux.org so let me know how you’d like to be credited *if* you’d like to be! So Joy, your whole name, some other name, no name, etc xx
Joy: Joy please. Lol, this will be the third blog where someone has published my ideas. It’s just fine with me, cause it’s the writing part I’m bad at. Yay teamwork
infantreflux: what are the other two? share! I can link them!
And how we do food trials: Updated Food Trial Method
And this is my Facebook Page: Defending Joy
And here’s my new book! The FPIES Handbook
infantreflux: ok so back to breastmilk? isn’s there bacteria there? so what would a mama look for?
Joy: Yes, breastmilk should have bacteria. If bacteria levels are low, mom should increase probiotic supplements.
infantreflux: Ok I’m going to keep going, LOL. Let’s talk Ubiome. Step by step. You order a kit, which one to choose? here’s the choosing your kit link: http://shop.ubiome.com/pages/buynow
Joy: Really you can pick any of them. Just depends what you budget is and how many things you want to test. You get a discount for buying 3 or 5 (time lapse or multi site). But you can use all 5 for gut samples if you want. You do not have to use them all at the same time. Each kit comes with spare tubes, and if both the primary and spare tubes arrive intact, you can pay a discounted price to send the spare tube back also. The site will let you change what sample type each tube is.
infantreflux: ok so baby is born. baby has reflux. 4 scenarios: (1) mother doesn’t think it’s related to a protein in her diet being passed via her breastmilk to her baby. she medicates baby. She’s curious about everything so she what? should test baby’s poop and mama’s breastmilk? (2) mother *does* think it’s something in her diet. She’s eliminating offenders as she finds them. again: breastmilk and baby’s poop? (3) baby is formula fed. so baby’s poop? (4) is there a scenario where mama just doesn’t need to know?
Joy: I think the most important test is baby’s gut. At least two tests are recommended, because even a healthy infant gut will change rapidly. If they can afford it, mom’s gut and breastmilk would be next.
What happens next depends on the results. Dysbiosis isn’t always as obvious as it was in my daughter.
And even if mom doesn’t think the reflux is from her diet, it won’t hurt baby to try cutting out the most common offenders for a couple weeks.
infantreflux: yes I encourage this and also the Total Elimination Diet, TED
Joy: that TED is good for IgE allergies, but horrible for FPIES. Squash, turkey, and rice are all common FPIES triggers.
infantreflux: The TED also good for IgG … let’s say breastfeeding mother does TED (above) and it’s still no ‘good’ after the 2 weeks. then what? what to sub out for each thing? squash? turkey? rice?
Joy: Below is my advice from the FPIES group. I also suggest using the FPIES Food Survey linked above for picking foods based off success rate (if FPIES is suspected).
To start a TED:
1 meat, including the organs (grassfed lamb is a good option)
2-4 vegetables (different colors)
infantreflux: thanks! so I think this would be good for those who do TED and are then looking to swap things out, for example take out rice and add another starch (sweet potato and white potato are all ready there but maybe add another – any suggestions?)
Joy: yes. Starch can be any grain, pseudograin, legume, potato, or squash. In particular sweet potatoes, rice, oats, green peas,and winter squashes are higher risk for FPIES. So that Leaves things like quinoa, millet, lentils, white potatoes, buckwheat, and any pseudograin.
infantreflux: what’s a pseudo grain?
Joy, about broth:
I would start babies with meat broth, more gentle for digestion, plus lower histamine.
The age of the meat/bones (time in the fridge), duration of cooking, and duration of time in the fridge after cooking will all increase histamine. Cooking from frozen meat/bones, short cook times, and freezing right after making will decrease histamine.
The placenta makes DAO, and another enzyme that both increase histamine tolerance, so I think any homemade broth is good for pregnancy.
Joy: More information about maternal omega 3.
Omega-3 fatty acids, fish oil, alpha-linolenic acid
To treat allergies in the infant, 1.6 grams of EPA and 1.1 grams of DHA (Bio Marin®, Pharma Nord, Vejle, Denmark) have been taken by mouth in mothers from the 25th week of pregnancy through 3-4 months of breastfeeding. Other studied doses include 3.7 grams of omega-3 fatty acids daily beginning at the 20th week of pregnancy until birth; 1.5 grams of omega-3 fatty acids daily during the first four months of breastfeeding; 0.5 grams of DHA plus 0.15 grams of EPA daily beginning at the 22nd week of pregnancy until birth; 2.7 grams of marine omega-3 fatty acids containing two milligrams per milliliter of tocopherol from the 30th week of pregnancy until birth; and 1.6 grams of EPA, 1.1 grams of DHA, and 23 milligrams of alpha-tocopherol taken by mouth daily from the 25th week of pregnancy through the end of breastfeeding. Omega-3 fatty acids, fish oil, alpha-linolenic acid
And here’s Joy’s Book!