At least five times a week, probably more, I get asked questions about my boys and their food allergies. Questions range from the general 'how are they doing?' to the technical 'what does FPIES stand for?' to the more specific 'what do you do when they have a reaction?' If you're connected to us at all, you're probably aware that they have issues with food. Not only do I talk about it a lot (sometimes I get tired of me!) but it is a really huge part of our daily lives, so it's kind of hard to avoid. My answers to the questions vary, depending on how much time we have, who is asking and if they really want the full answer, or the short version.
So, I thought I'd answer some questions here! That way, if you're really interested, you can get the details that I may not be able to share in passing, and if you're not, you can totally skip over this post and I won't blame you. My hope is also that if someone is furiously scouring the internet for answers and someone who can relate to what they're going through, maybe they'll stumble on this post and know they're not alone in the crazy world of guts. Here we go!
1) What do you mean by 'leaky gut'?
Our guts are the center of our immune system. Everyone's intestine's are lined with microscopic fibers and a thin protective coating, the purpose of which are to help break down food into amino acids and to keep particles that shouldn't be going into our systems from seeping out. Our guts are also the source of billions of bacteria, both good and bad. If the balance of bacteria is off, that can cause issues such as illness, allergies, eczema, IBS, fatigue and a host of other problems. That's why you always hear encouragement to take probiotics if you have to take an antibiotic for any reason - to restore the gut flora back to a healthy state.
When the gut flora is off balance, and the lining of the gut isn't stable, particles can slip through 'holes' in the lining and into the blood stream. Thus the term 'leaky gut'. Most babies have some of this until around 6 months when their digestive system matures and the holes close up. However, some babies can have larger holes that allow more unbroken particles through, which can lead to much bigger, more permanent problems.
2) How did your boys get this?
Ahhh...the million dollar question! While we weren't inside their bodies to see exactly what happened, based on their symptoms, the timing of them and in talking with multiple doctors, this is what we've been able to determine: Jim's side of the family has a genetic predisposition to gut issues with the boys on their side of the family. It manifests itself differently with each boy, but it's one of those things that is well-known in the family, "oh, those Meador boys!" "Jimmy, you cried ALL THE TIME". You get the picture. With both boys, I was Group B positive (a type of strep that is very common in pregnancy) and mastitis (a breast infection) shortly after they were born. With Graham it was at 3 weeks, with Jude at 5 days. With Graham, I had antibiotics during labor for the Group B, and for the mastitis. With Jude, I refused antibiotics during labor after much research on Group B and tried to avoid them via natural means with the mastitis but it became absolutely necessary to have them - a lot of them. Referencing the question above, antibiotics kill off the good gut bacteria. Like, all of it. Gone. With Graham, I didn't know much about probiotics; with Jude, I was popping them like crazy trying to counteract the effects of the antibiotics. However, with the combination of genetics and the antibiotics, both boys started showing signs of reflux shortly after the antibiotic doses. With Graham it was within about a week or so; with Jude it was a couple of weeks after I had started them.
As best we can determine, the antibiotics damaged their guts more, allowing larger particles into their bloodstream. This begins a horrible cyclical process, where the body attacks the particle as a foreign object, because it's not supposed to be in the bloodstream. However, because the gut is damaged, it is unable to fight the 'foreign body' as well as it should, which allows more particles in and it begins all over again. Rather than amino acids, the whole food protein slips into the bloodstream.
3) What is FPIES and how did Graham get that?
FPIES stand for Food Protein Induced Enterocolitis Syndrome. It's kind of like Leaky Gut on crack. Because we had no idea what was going on with him and it was such a ride trying to figure it out (more on that next), basically, his gut was continually being damaged. Once it has been fighting these 'foreign bodies' long enough, it develops into a chronic condition, one in which the T cells identify certain food portions as invaders every time they enter his body. Why certain foods affect him and others don't, we're not sure, as there are some pretty random ones. So, rather than his gut healing, it became damaged long-term, and will take a long time to heal.
4) How did you figure out what was wrong?
Oh. This question. None of these are short answers, but this one is the one that is the longest. Not only in words, but in life lived.
Graham: We lovingly refer to our first 6 months as parents as 'the time when Jim hated our child'. Once Graham started with the reflux, we started paying attention to what I was eating, since I was breastfeeding. We immediately noticed a correlation between dairy and him screaming incessantly for hours on end. I gladly cut that out of my diet, but he was still miserable. I decided rather than do an elimination diet to do the reverse - purposely add one thing into my diet and see how he reacted. I got a coffee with soy milk, and within 4 hours he had projectile vomited 3 times. I ate an egg and he vomited so much I took a picture to document that the entire length of my arm was covered. And on and on. When he was around 3 months old, it was Super Bowl Sunday and we had turned on the start of the game. He started refluxing and up came large chunks of blood. We started driving to the emergency room but then called his doctor's on call line and she said it was safe to wait and bring him to her first thing in the morning. His esophagus was so damaged from all of the refluxing (and screaming probably) that it had torn. She prescribed a very high dose of Zantac to stop the bleeding and we gradually lessened his dose over time.
I was having a very hard time knowing that anything I was eating could be causing him pain, and it was a constant guessing game. For both our sakes', we tried a hypoallergenic formula that had the proteins already broken down. He still had a lot of issues (which I now know why via what we've figured out with Jude), but was SO much better in comparison. I still remember the first time we went to the chiropractor after switching; he couldn't believe it was the same baby. He used to scream every time we went, and this time he was smiling and laughing. When we started solids, certain foods would cause him to break out in a rash and vomit. Never immediately, but within a few hours. To make a long story a little shorter...I did a ton of research, kept a food log, documented his reactions to every food - what reaction, when it occurred, how long it lasted, etc. and took it to his doctor. At one year, she agreed to allergy testing and stool samples - everything came up fine, which was actually really frustrating. When you know something's wrong but on paper it looks fine...not cool. More research, more logs, more documentation. A friend stumbled on something about FPIES and said 'hey! this sounds like Graham!' I had never heard of it but immediately learned everything I could and brought everything in to the doctor again when he had just turned 2. She agreed he needed to see the GI. After more tests (holding your screaming two year old to get 5 vials of blood is awful, just FYI), he was officially diagnosed with FPIES.
Jude: As soon as he started showing signs of reflux, I was it like white on rice. Immediately let his doctor know, started monitoring everything I was eating, etc. Within less than a week of his symptoms starting, he began choking. Like, stop breathing face turning purple choking. There was one day I had him flipped over banging on his back, all the while sobbing and scrambling trying to remember infant CPR. After that incident, we got a Zantac prescription. The reflux didn't go away, but it did calm the acid enough to prevent the horrendous choking episodes. Around that time we decided to stop breastfeeding (will explain more about why later). We tried him on an organic dairy formula, and for a few days thought 'Yes! this is working! he doesn't have allergies!' Then he started choking again and was so constipated he was crying in pain. Boo. We switched him to the sensitive formula and the same. We avoided soy completely because that is Graham's biggest trigger and would potentially give Jude a worse reaction than the dairy. We switched him to Alimentum, which was what Graham had been on. For a bit, it was a lot better, but then he totally stopped pooping. Completely. When we helped him to go, what came out was dark green, mucous and runny. The reflux came back with a vengeance, but was more mucous as well, and he broke out with eczema. We immediately got a referral to the GI (remember Graham was 2 before he went - Jude was less than 3 months!) They ran tests and confirmed the milk protein allergy - his lactoferrin levels in his intestine were at 250; the normal range was 1-7. However, the GI thought that the Zantac and Alimentum were the best solution; I didn't. I ended up calling a D.O. that we consult with; he suggested immediately switching to goat milk, and adding colostrum to it, along with the probiotics he was already getting. I was able to secure some from our local Mennonite store, and then endured a couple of hellish days. Then, on day 3, after 5 weeks of not being able to go on his own at all, he pooped. And pooped. and pooped. It was insane how much he went - he ended up with hemorrhoids from so much straining. His eczema started to get better too. A couple of weeks later, it came back. We couldn't figure out what was going on, but the D.O. thought it was the Zantac. So we went ahead and cut it out cold turkey. Again, a couple of hellish days, then he started getting better. The eczema was almost gone! I did some more research and found out that Zantac has corn in it. The Alimentum is corn based. He is hypersensitive to corn. Funny thing is, Graham is allergic to corn as well, but was on both of those for a long time, which I think contributed to the FPIES and his gut not fully healing as it should have.
5) What are they allergic to?
Graham: Poultry, beef, dairy/casein, soy, corn, egg, peas, kidney beans, pinto beans, garbanzo beans, quinoa, lentils, nuts, green beans. He can now have organic pork and pears, both of which used to be on his list! Why organic pork? He is so highly sensitive to corn and soy that if he eats 'regular' pork, he'll react because of what the pig ate. (this is where I could go on a whole rabbit trail about GMOs and how it's transferred through our genetics over the years and is now affecting our children...) We tried, and it wasn't a good outcome. Thankfully we live in an area where organic meat is easy to come by!
Jude: Dairy/casein/lactose, soy, corn. This is what we know so far. He's also so sensitive that if we buy goat milk say, from Kroger, that isn't pastured and antibiotic-free, he has a reaction and we have a huge setback. This is also why I stopped breastfeeding. I wouldn't have been able to accept meals from almost anyone without knowing exactly what was in it, if the meat was 'OK', etc.; would have to bring my own food basically everywhere - family's houses, restaurants, friends' houses, etc. And something as slight as a little bit of maltodextrin as a seasoning (it's corn) would affect him for a week or more. Having been through postpartum so badly last time my psyche couldn't handle that. Considering he's only 4 1/2 months old and been on the goat milk for just over a month, we haven't been able to get a good baseline for more than a week yet, as we tried a couple different kinds and he had the Zantac in his system, etc.
6) What happens when they have a reaction?
Graham: it depends on what it is that he eats. On the minor end, like with kidney beans for example, he won't feel well for a day or so, will get a rash on his face and bottom and will have some nasty poops for a day or two. Like a typical virus, which is what his body thinks it is. On the serious end, like with soy, it's a lot worse. He once had 3 slivers of cucumber from a sushi roll that had soy sauce on it, or another time had about 5 pretzels that had less that 2% of soy in them. Around 2 hours later, he starts getting purple under eye circles and sunken eyes, and his face and bottom start breaking out. About 12-18 hours after, he spikes a fever, which can go up to 104 degrees. He'll feel well in spurts then go back to the fever and lethargy until he has a literal shitstorm (it's a LOT of poop) where everything he's eaten since the trigger food is barely digested and all comes out at once. When he was in diapers, that was lots of fun. The worst one he's had took about 3 days to get out, and his system started to go into shock afterwards - full body chills, low body temp, the whole bit. That's the danger of FPIES - he can go into septic shock because his system gets so backed up the toxins start leaking into his bloodstream.
He also has behaviors: dairy makes him super aggressive; corn makes him unable to focus at all. You can see it in his eyes when he's like this - his brain is going about 300 mph. He told me recently that his 'tummy felt wiggly, so I have to act wild to get all the wiggles to stop.' We tried snap peas this week as a food trial - it's a no go. Today he was very aggressive, hyper emotional, had diarrhea no less than 8 times and has a horrible rash. From 3 peas.
Jude: horrible horrible eczema - pussy and bleeding, can't poop on his own at all so gets very backed up (which also poses the risk of septic shock), can't sleep (up most of the night and won't sleep well during the day) and colitis (his intestines are inflamed and very painful). He grunts and strains all day because his intestines hurt so much, and wants to comfort feed which makes him then spit it back up because he doesn't need it but he wants something to make him feel better, or he'll scream til he gets it. It's sad. :( He's having a reaction today too, and we're not sure if it's the end of a weeklong reaction to some store-bought goat milk or what (sometimes it's worst at the very end of a reaction).
7) How are you treating it?
Morning cocktails. Ha. But really, that's what we call them. Graham gets a small amount of orange juice mixed with a glass of water, probiotics, L. Glutamine (an amino acid to repair the gut lining), and enzymes (to help with the breakdown of food proteins and increase his immune system). Jude gets goat milk, an adult dose of probiotics split between his daily bottles, and powdered goat colostrum, along with a small amount of prune juice in every other bottle to help as he learns to go poop. Since he hasn't gone consistently ever, he's learning how to use those muscles and sometimes has difficulty and will make himself throw up pushing too hard.
Otherwise, food avoidance. We bring our food everywhere. For example, we went to the zoo with my brother recently, and I brought a cooler with a days' worth of food for Graham as there was literally nothing at the zoo we could purchase for him, and then a separate cooler with a days' worth of goat milk for Jude. Add those to the stroller with the diaper bag and Graham's seat was taken! We've also learned how to substitute lots of things - what to use instead of eggs or baking powder when baking; which brands he can have of certain items, etc.
8) Will they outgrow it?
Eventually, if we can heal their guts. Jude's on a much faster track than Graham was at this point. Graham will possibly always have issues with dairy, soy and corn as he reacts so severely to those, but the others he should be able to eat eventually.
It's a wild ride. Tonight I was really over it. That comes in spurts. Most days we're used to it and it's just life, but sometimes I really, really hate it and it sucks. I'm thankful that they have been able to gain weight (and a lot of it!) despite everything, and that they both have the sweetest personalities! While I wish they didn't have to deal with this (or us too, let's be honest), I'm so thankful that God blessed us with them both, just the way they are. If you have other questions, feel free to ask!
