Saturday, January 25, 2014

Our Story with MSPI/FPIES

Look! He's not crying!
L came into our lives in November of 2013. He truly is our miracle baby, as we had lost several pregnancies before he came along. When he was born, there was a flood of emotions from both my husband and I. Being new parents, of course, we were scared to death, but we were so blessed to have given birth to a healthy baby! For the first two weeks of L's life, he was ok. Slept, fussed a little, pooped, slept some more. No big deal. The real trouble didn't start until L was two weeks old.

It started with arching backwards after mealtime and crying. His little body would lock up and he would just cry and cry. Soon it turned to screams - inconsolable, agonizing, screams. He didn't want to eat much (I nursed him for the first year), but when he did, within hours the screaming would start.

I went to the doctors, begging for advice, ideas, anything. They told me L had colic (he met the requirements: screaming for at least 3 hours a day, 3 days a week for 3 weeks in a row - haha more like ALL day, EVERY day of the week) and it was normal. They said he'd grow out of it.

Not long after that doctor visit, I was at my wit's end. I literally had no tears left - L would wake up content for 10 minutes and then start crying, screaming even. And it was bloodcurdling "I'm-in-pain, Mommy" screams. I was completely clueless how to help him. It got to the point where he would wake up from a nap or in the morning, and I would just start crying because I knew the gut-wrenching screams would start soon. Nobody in my family had ever dealt with this, so I was on my own.

I started doing research and talking with other moms. I found myself reaching out to other moms of fussy infants, looking for answers. I found that some of L's symptoms matched up with silent reflux, or GERD. So I wrote down all of my research and brought it to his doctor (they wouldn't have figured it out otherwise). So they put him on Zantac which didn't work - 2 weeks later, he was on Omeprazole. This helped somewhat, but I hated having my baby on medication (not to mention some of the ladies I went to church with clearly disapproved, but I won't get into that right now). Again, I was a new mom, and didn't know what other choice I had. I kept going back to the doctors again and again, desperate for answers, exhausted and drained mentally, emotionally, and physically, just to be told again that it was "normal".

We tried everything - gripe water, gas drops, teething tablets, probiotics (later on down the road, these actually did help him with bowel movements and we are still giving him these - they are wonderful - we just had to get the Klair Labs Ther-biotic formula, which is allergen-free) - you name it, we tried it, all to no avail. We did our best to stick with natural methods (we STILL do this - it's the best way now, in my learned opinion), but none of them worked. He continued with the foul, mucousy stools, the inconsolable screams throughout the day and evening, the arching back in pain, and even blood in his stool.

Finally, one Sunday, while in the nursing mother's room, I talked with another young mom who had experienced "colic" with her first baby. She suggested I take dairy out of L's diet (in other words: I had to stop the dairy, since I was nursing) to see how he did. I immediately removed all dairy from my diet and within 2 weeks, the screaming had subsided some. She then suggested that I take out soy and he showed even more improvement! The doctors never suggested I change my diet - all they did was give me medication for L and tell me it was normal.

When it came time to give L regular food, I tried peas, which was a NIGHTMARE (I found out later they are a part of the soy family), and sweet potatoes (WAY up there on the FPIES reactor list). I was scared all the time and it came to the point where I was frightened to try new things for fear of hurting him. The first year of L's life was the worst year of my own. We were so blessed to have him, but new moms are already struggling with their new identity anyways. I had gone from a career-driven woman to a stay-at-home Mom of a very fussy and needy baby. He cried all the time, and I was helpless to ease his pain. I was desperate to get him his nutrients and I was pressured to quit breastfeeding and give him formula (I later found out most formulas contain soy and the ones that don't were way too expensive, we couldn't afford them). Members of the family tried to be helpful, and suggested he was hungry (some even told others I was starving him!). I was stubborn and continued to breastfeed him and continue to trial new foods, despite constant setbacks and criticism from others. Without my husband's support, I never would have made it through that first year. I reached a depression and lows I never even knew existed. I hated myself for not being able to help my baby, and the pressure from those around me, who thought they knew better than me, made it even worse. Removing the dairy and the soy helped, but each new trial was a learning lesson in what he could and couldn't have, and more often than not, it involved L being in extreme pain.

L now - he loves bringing me flowers! Fast forward over 2 years later: while I don't have all the answers, I can say with absolute certainty that L's doctors were just about useless (I still have anger problems with this, working on getting over it). Everything that I learned about his condition (MSPI/FPIES) came from hours and hours of research, consulting with other moms, and trial and error. He still has reactions to random foods I miss, or food that takes longer to build up in his system, but for the most part, he's a pretty active toddler who enjoys playing outside and getting into things.

His list of things he can't tolerate far outweighs what he can. He has maybe thirty safe foods, including oils, milks (coconut and goat), and baking items. If he has even a trace of a trigger food today, his reactions vary from inconsolable crying/behavioral problems during the day, severe constipation, stomach cramps and pain, sleep disturbance (waking up at night screaming, and inconsolable - having to watch him for shock and low temperature), and severe diarrhea. These will all occur for DAYS after he ingests a trigger food. He does not have vomit to shock like so many FPIES kids suffer with, but he has all of the other symptoms, and reacts to every food on the FPIES trigger list, other than some fruits.

I have spent countless nights with him, holding him while he screams and thrashes in pain for hours; praying that God would give me his pain instead, pleading and crying along with him. Messaging friends and families and imploring facebook friends to please pray for my sweet boy. Agonizing over when to call the Doctor, and when to just hold him and comfort him. Feeling for his temperature, making sure he hasn't gone into shock from the pain.

What other families might take for granted, we never will. A cooler goes with us EVERYWHERE with L's food and milk. We cannot order from restaurants for him, we cannot go through the drive-through or take him to playgroups. Trips need to be planned around his needs, and when we do go places, one parent is on him at ALL times to make sure there are no crumbs on the floor he can pick up, or drinks anywhere he can find. This is our normal, and we are used to it now. We try to avoid group settings with food unless we are up for watching his every move, and vacations involve heavy grocery shopping before we leave and coolers PACKED full of his things.

Our church is blessed with wonderful administration, who provide the only safe crackers L can eat for ALL of the kids, so L eats the same they do (this in itself made me cry, he has never been able to eat the same thing as other kids!). We have two people we trust to watch him outside of us - that is, my mother and my best friend. If we have a date night or go away at all, we leave a list of his foods for them, and have everything ready on his own shelf on the fridge. They are phenomenal with him, have been invaluable in helping us get away for a night when needed, and have learned to be very careful when giving him any food. Pots, pans, plates, cups, silverware are all cleaned separately and with a different cleaning utensil. He has his own soy-free cooking spray we use for cooking on the stove with his pans only. He eats almost exclusively organic produce, and everything is non-GMO.

L has taught us so much - patience, consistency, perseverance, determination, but most of all: love. We love him unconditionally and are so blessed to be able to care for him! He taught me to get over my fear of Doctors, or speaking up to Doctors or well-meaning loved ones, being patient, and helping him through each reaction. I learned to have patience, lots of cuddles, and watching him like a hawk during a reaction, and researching to find out what could have caused it (he once was up all night screaming over THREE black beans we trialed, and also cookies that had invert sugar as an ingredient I had overlooked).

We truly are blessed - not only do we have a happy, healthy child now, we also have been introduced into the world of allergies, and I have met so many amazing parents who have pushed through way more than we have! Our families are now behind us 100% and I am working to raise awareness for FPIES/food allergies!

-Amanda :)

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