I have three girls who I absolutely adore. All three of them are vastly different and also have many similarities. Each of them have food allergies and/or intolerances. Today, I’m going to share about my youngest daughter, Zippy’s journey with food. Currently Zippy is four, about to turn five in about 6 weeks. Zippy arrived a week early and was the sweetest and calmest of my girls in the newborn phase, except for eating. By the time I took her for her one week check up, I knew she had feeding problems. I told our pediatrician, who we knew very well, that Zippy aspirated when she ate. He suggested that I find a premie nipple for the bottles I was using, but I couldn’t find them anywhere. I was stuck using a level 1 nipple and Zippy continued to aspirate. She would get a little bit into her feedings fine and then start screaming profusely. This went on, for a LONG time. More on that later.
I don’t produce enough milk to feed my girls properly so I have had to use formula for all three of them. With the first two girls I attempted to breast feed, pump, etc. and nothing worked to create enough milk for me to feed them. With Zippy, I didn’t even try because it was so much work and I knew it wouldn’t give her the nutrition she needed. I had someone very close to me that was willing to give me breast milk since she produced enough to feed triplets. She also happens to be dairy free and pretty much soy free as well. I got almost 5 weeks of a milk supply from her which was nothing short of amazing. Sorry if that grosses you out, but it was an amazing blessing for my girl! After the 5 weeks, it wasn’t possible for me to continue to get milk so I had to switch to formula.
The first formula we tried was dairy formula, remember my middle daughter Peppy’s food allergy journey? I was prepared that Zippy might not do well with dairy, but NOTHING prepared me for what was to come. The first try with dairy, I sat on the couch, covered myself with a towel as a precaution. Let’s just say that Zippy could have won a prize for how far and much she vomited! I thought my middle vomited a lot, but Zippy put Peppy to shame, no joke! My husband came in after I yelled as loud as I could and asked, “WHAT IN THE WORLD HAPPENED??” I was covered, Zippy was covered, the precautionary towel was covered, and part of the couch was covered. Honestly, the mere volume that came out shouldn’t have been possible. We both had to shower, there was no other way to clean us up. I’m sure we tried dairy on more than one occasion, but I can’t remember. Clearly, she was allergic to dairy. We moved onto a soy based formula with the same result. Then onto Nutramigen, a hypoallergenic formula, and she still had the same result. This was not new for us, so our pediatrician referred us to the same GI at Seattle Childrens Hospital that was treating Peppy for food allergies as well. After reading her medical history, listening to me share, and knowing Peppy’s history, he believed Zippy also had severe, though non-life threatening, food allergies to dairy and soy. We put her on prescription formula and she thrived right away. Thankfully this process was SO much faster with Zippy than it was with Peppy since we had been down this road before.
The vomiting and diarrhea stopped immediately with the new formula, but the screaming with feedings didn’t. I persisted with our pediatrician and GI about Zippy aspirating with feeding. Let’s just say the medical process can be slow sometimes even when you love your practitioners and know them well. When Zippy was 9 months old, she finally got referred for a swallow study. By that time, Zippy was drinking an 8oz bottle several times a day. When she got to 3-4oz she would always start screaming and not want to drink anymore. Being the persistent lady that I am, I knew she needed full feedings, so it would take me an HOUR each time I fed her. It was literally a part time job to feed her with her screaming through most of them. Sure enough, when Zippy got her swallow study done, she aspirated between 3-4oz and then would scream because it hurt going down the wrong pipe. We are really lucky that she never ended up with pneumonia from all of the aspirating. She got put on a thickener that got mixed with her formula. That was quite a tough transition. Now that the formula was thicker, which was good for her to not aspirate, she got frustrated really easily because it was so hard to suck out. We struggled for about a week before we got her to drink full feedings and not scream. You guys, can I tell you what a miracle this was for me? Nine months of a baby that screamed with every feeding and took an hour to complete a feeding was draining in every way.
Around the same time we found out that Zippy had swallowing issues, she had also quit rolling over and sitting up. She was referred to Occupational Therapy (OT) with issues of being high tonal. We loved her OT, and through her we figured out that Zippy also had sensory processing differences. I could have a whole separate blog for that. My guess is that all these issues also played a part in her aspirating. Zippy ended up being on thickener for several years and then “graduated”. YAY!
As Zippy got older, she too had more and more food allergies and sensitivities. When she was just over two years old, she started having a lot of bowel issues. She had been potty trained since she was 21 months old, but she started having uncontrolled bowels. We took her into the Dr., they did an x-ray on her stomach and her bowels were very backed up. The Dr. decided to also take stool samples. On multiple occasions Zippy tested positive for malabsorption but no one could figure out why. We headed back to her GI for more testing and still no one could figure out what was wrong with her even though her symptoms persisted. About 6 months after we started this piece of her journey, we had a GI appt with someone filling in at the clinic. Our GI was on vacation. This new GI took one look at her hair and asked me if I ever thought her hair wasn’t normal, it was VERY short, didn’t grow well, was wiry, and thin. See picture above. I just figured all kids got hair at different ages so I never thought very much of it. He did several tests on her and they all came up negative, so we were back to not knowing what was wrong with her. I was in close communication with her pediatrician and she told me to rack my brain about ANYTHING new I had added to her diet around the time the symptoms started. Since Zippy had several food allergies at this point, I was careful about adding new foods, but I racked my brain anyways. All of a sudden I realized, it was NUTS! I called the pediatrician and she agreed that could be the culprit, even though it would be a bit strange. Right away I took nuts out of Zippy’s diet and the results were amazing! Zippy’s bowels returned to normal almost immediately. What is even more amazing? She started growing hair! Within a few months she had a head full of hair. A year after we took nuts out of her diet, she had full hair down to her shoulders. The summer after we took nuts out of her diet she picked up a handful of cashews that Peppy was eating. I told her to put them down because she was allergic to them. She proceeded to lick the cashew dust off her hands and within minutes she couldn’t control her bowels. That all the more solidified what we already knew.
We have done oral challenges on Zippy, with the ok of her GI, for dairy and soy. The challenges did not go well at all for many years, until this current year. Zippy is now just intolerant to both which is HUGE. We still avoid them, but don’t worry about her accidentally getting sick from cross contamination when we are out. She is still allergic to grapes, corn, nuts, and is intolerant to dairy, soy, and gluten. Our journey with her has been long and exhausting. She currently has reflux (again) so bad that she wakes up most nights feeling sick. UGH! The poor girl is quite a trooper though. She has suffered well and proven she is very resilient. In her honor, I’m giving you the recipe of one of her favorite foods, Sloppy Joes. As always, I would love to hear from you if you have questions or if there is any way I an support and help you through your food allergy/intolerance journey. I’ve been there over and over and I believe we are thriving and would love to help you thrive as well.
Tomato Free Sloppy Joes
1 T Olive oil
2 t Onion powder
1 t Salt
2 pounds Ground beef
3 C Red pepper sauce
2 large Carrots
½ C Cauliflower
1/2 C Chicken or beef stock
2 T Worcestershire sauce
2 T Red wine vinegar
3 T Coconut sugar
1 t Italian spices
Brown the ground beef until it’s almost all the way cooked through. While the ground beef is cooking, steam the carrots and cauliflower until they are fork tender. Once they are done, blend them until they are a paste, then add the pepper sauce in with them and blend them all together. Put the sauce and the rest of the ingredients together in the pan and mix until well combined. Simmer together, stirring occasionally, for about 20 minutes. Take the meat mixture and place it on a bun or French bread, then top with cheese. Enjoy!