Matthew's Story

Birth
Matthew was born by C-section one morning shortly after Thanksgiving. Thank goodness, because I really didn't want to miss stuffing and pumpkin pie! We hadn't planned on a C-section and had skimmed most of those parts in the birthing books but as luck would have it, ended up needing one anyway. The first sound he made was a sneeze, and then we heard his cry. As first time parents, we were completely in love with him, and he immediately became our whole world. I have never loved so fiercely.

Things I Didn't Know about Babies: Feeding and Sleeping
That first night in the hospital was difficult, learning how to breast feed in particular and the difficulties continued when we got home. After weeks of scouring the internet, reading books, and lots of crying and pumping, I called a lactation consultant, who actually taught me how to breastfeed. I had always thought it would just come naturally, but that wasn't the case. Finally, it became easier.

Also, I thought babies just went to sleep when they got tired. Also, not the case. You have to put them to sleep or at least create conditions under which they learn to fall asleep independently. Matthew was never a good sleeper. He cried a lot. We spoke to our pediatrician who said "Babies cry. We don't know why." I felt like his tummy hurt because he would bring his knees to his chest and fart...I started him on a probiotic which I continued for 21 days which is what the label suggested. I don't think I noticed a difference. Eventually, we got so desperate for sleep that I would co-sleep with Matthew at 7pm with him literally attached to my nipple all night. If it came out, he would cry, so I tried to stay awake as much as possible so my husband could get some decent rest to go make the money. That lasted three weeks. Then, we sleep trained. Matthew was finally able to sleep independently in his crib after that. However, we still had (and have) night wakings every 30-45 minutes from the end of the first sleep cycle to about midnight and then every 2 hours after that until morning. We generally have an early wake up at 5:15 am but he does go back to sleep. Rarely has he ever woken up (morning, night wakings, naps) and not cried.

Introducing Solids
By 6 months I was excited about trying solids and, like every parent, wanted to take photos of my messy baby. We started with 3 days each of avocado, sweet potato, apple, rice cereal, banana, pear, prune and were starting apricot to which I added some rice cereal to bump up the calories. About 2 hours after that meal, Matthew vomited profusely for a good two hours, terrifying me. Throughout the day, I called Telehealth 3 times, and took him to the pediatrician and eventually ended up, after 10 vomiting episodes, at the Sick Kids' ER department. It was a stomach virus, they all said. Sick Kids gave us half a tablet of Ondansetron and warned us about diarhhea as a side effect (but he'd already been having some so we didn't mind). We rehydrated him with Pedialyte (as even a one minute nursing session wasn't staying down) and I stayed with him in his room that night. The next day he was better, but still having diarrhea (and developing a diaper rash for the first time ever) so I decided to help out the diarrhea give him some binding items: a little rice cereal and banana. It had been over 24 hours with no symptoms so thought the virus was done, and of course, he vomited about 2 hours after that again. I felt so terrible, because I had clearly given him food too soon! As a first time mom, I felt like I just didn't have any instincts to go on but I didn't make that mistake again. I waited 10 days where we took a break from solids altogether and just breastfed. Then we started again, with rice cereal, and a tiny bit of chicken mixed with apple. The same reaction happened 2 hours later while he slept: vomit all over his hair, ears, onesie, sheets, and sleep sack. I called the nurse and she said it was yet another virus, but I knew it couldn't be. I was already skeptical about the first time (no one else was sick and we hadn't really gone anywhere except to the park where he mouthed a swing), but the second time I knew it couldn't be.



Unraveling a Mystery
I googled "vomit rice cereal" and read several descriptions of FPIES and it described exactly what had been happening. I looked back through my food logs at the first time I had given him rice cereal and realized that he had vomited that day but because I had only been aware of oral allergy syndrome, and the reaction was so delayed, I didn't connect it to the rice. I immediately printed out several articles and went to the pediatrician who, probably mostly because I was so upset, referred me to an allergist who confirmed the diagnosis based on my food logs and helped me to formulate a plan moving forward.

I am thankful that our diagnosis came soon. I read stories of children who were misdiagnosed or un-diagnosed for months and years and parents who were offered little to no help and tried to figure it out alone. The stories of Nolan, Gavin, Samuel, and many more make me so grateful families have put their experiences online so that we could become informed and advocate for our child.