So Your Child Has Been Diagnosed with Severe Food Issues…What now?

Today we have a guest blogger—my cousin, Jennifer Harris! She will speak about a topic that may touch your family’s life—severe food issues. This month of May is Celiac Awareness Month, and there is no more qualified mom to speak on the topic than Jennifer. And, if you are a mom of a child with this disease, you will see from Jennifer’s story that although it is overwhelming, adjusting your pantry and your lifestyle is possible. Also…you are not alone!

I hope that this testimony will bless your life and encourage your soul.

Right after my son was born in 2007, my daughter, Natalie, began to have mucus in her diapers. She also needed to have her tonsils removed and so when we saw the ENT and mentioned it to him, he told us not to worry. Kids can have allergies or colds and swallow mucus and then it ends up in the diaper. We didn’t worry.
Then, along with the mucus, we began to see specks of blood. We worried. We took her to her pediatrician who also backed up the environmental allergy likelihood, but they sent us home with some supplies to test her stools (ex-we were glad at that point she wasn’t yet potty trained. This could have gotten a lot more icky really fast)!
After the test results came back, we discovered that she had Clostridium Difficile (aka C Diff) in her stools. She was placed on an antibiotic that had to be mixed in a specialized pharmacy. We did a lot of research, which backed up what the doctors were saying. This is easily picked up (who knows what is on those grocery cart handles and bank door knobs!) but typically easily treated. We already washed our hands like fiends, but obviously we must wash more! Our hands were bleeding and raw.
The problem seemed to improve on the last day or two of the 10 day cycle of medication, but as soon as she was off the medicine, the symptoms came roaring back. No longer was it specks of blood in the stool, but quarter teaspoons. More specimens obtained, more medication. We were driving around the state to find the specialized compounding pharmacies we needed to prepare the treatment. Meanwhile, our primary care physician suggested that we find a doctor specialized in GastroIntestinal (GI) diseases. C Diff is common in elderly hospitalized populations, and can become a super bug that is nearly impossible to treat. The waiting list to get in to the GI doctor was long-nearly 3 months-but we asked to be bumped up if anyone cancelled or an opening became available.
Meanwhile my son, Jack, began bleeding as well. C Diff is extremely contagious. We reviewed policies at our church to make sure the workers were gloved and sanitizing the areas where diapers were changed. Things were as they should be. What else could we do?
We got in to the GI specialist at the children’s hospital at last. We explained that we thought the antibiotics were not long enough. On day 9 or 10 the bug would appear to be beaten, but by the time we could see a doctor, get the antibiotics reordered, go to the pharmacy, it would be regaining lost ground. This doctor said the newest stool samples were negative for C Diff, but a test is only as good as the person reading it, so he went ahead and gave us stronger antibiotics and for a longer period.
But this could not go on indefinitely. When you take antibiotics for extended periods of time you begin to get secondary infections and you become immune to their usage, making it possible to die in the future from some simple infection that would have been easily treated if only you had not taken so many antibiotics in the past. He told us if this did not work we would have to be scheduled for an endoscopy and colonoscopy to see what else was going on. We were sure things would be fixed. But then they weren’t, so the surgery was scheduled.
3 weeks from the surgery date, Natalie woke up screaming bloody murder. I did not know what the problem was, but as I changed her diaper, the answer became clear, she was experiencing some kind of abdominal distress. I changed three diapers without even getting her off the changing table as she continued wailing. I called the GI doctor’s office and spoke with the nurse who told me to pack up and bring her to the children’s hospital. They would admit her through the Emergency Room and perform the scope the next morning. We packed quickly and when we arrived at the ER, Natalie was dancing and singing and the doctor performing the exam wanted to send her home. I refused to leave and explained what the specialist’s nurse had told us to expect and finally, she was admitted. We left 5 days later with a diagnosis, but no clear understanding of what the future would hold for us. It turns out that a quarter to a third of all children naturally have C Diff in their intestinal tracts. The fact that she was testing positive occasionally was a fluke. The real problem was that Natalie had an autoimmune disease called Eosinophilic Esophagitis and Gastroenteritis or EE/EG or EOS (pronounced Eee-Ose). What happens is the eosinophils, or white blood cells, begin to attack the person’s normal cells thinking that they are intruders when the only intruder is an allergen. The eosinophils get out of control and begin to eat holes into the lining of the digestive tract which caused the blood that we had been seeing. It also causes an accumulation of scar tissue that can cause a difficulty in swallowing or in peristalsis, the moving of food down the digestive tract.
The next two years brought us lots of testing and examinations and headaches and tears. EE was and is a disorder about which little is known, even now, 13 years after the disorder was first officially discovered. It tends to be brought on by food allergies in children and environmental or food allergies in adults. Treatment is by steroids, which did nothing for Natalie, and food elimination. When we first went to the allergist for a specialized 3 day test called the Patch Test which tested for 5 common causes of EE: eggs, milk, corn, soy, and wheat, we were greatly concerned that wheat would be the cause of her distress. I had worked with a lady who was gluten-intolerant, and when our office had meals delivered she ate the only things she could: rice, salads, and bland rice cakes. Many times, there would be nothing available she could order from the restaurant or she would have to have items specially made. That seemed a terrible ordeal for any child to endure. When positive results came in for all but the wheat, we rejoiced! At least we could still have our wheat. Avoiding corn on the cob and tofu was no big loss, and we were already avoiding milk and eggs; this restriction had been implemented after a test Natalie had performed as a baby after a reaction to ice cream cake at a birthday party.
Interrupting our revelry, the receptionist warned us not to be hasty in our relief. She told us that suckers and pop corn would be included and handed us a page-long list of ingredients that are translated as corn or are derived from corn and are in many ingredient lists. It was daunting, but at least we still had wheat!
We went home and began raiding the cupboards. The results were devastating. Everything that came in a box or in a can had to go with the exception of crushed pineapple and canned peaches and pears in pear juice. Why on earth was there corn syrup in saltine crackers? We could understand the graham crackers, but really? Potato chips? We had a dear friend who bought all our boxes of pantry items and replaced them with items purchased from the natural grocery store. But those items were costly and we had to drive at least an hour to the closest store to replace them.
The worst part of it all was that I had begun to realize that if it were going to be eaten, I was going to have to make it. From scratch. The thing is, I was not a cook. My brother had always enjoyed baking and cooking, but not I. I suppose I didn’t particularly mind it. I made a mean hamburger helper, cooked a fabulous microwave chicken dish and even made a nice birthday cake once or twice a year. Otherwise, if it didn’t have a creamed soup from a can in the recipe list, I did not make it. It was too hard. I was too busy. It was not enjoyable. But suddenly that was not an option for me anymore. And I had no idea where to start.
The GI doctor gave us some names of some EOS support groups and families and told us of an upcoming annual EOS conference that was only 9 hours away. We called, we emailed, we signed up. But we still didn’t know what things Natalie could eat. Only what she couldn’t. I agonized over the difficulty of simply making each meal. And the next meal was always coming. Life during this time was very dark for me.
The other parents we spoke with had different allergies than ours. Many of their kids were picky eaters or were so restricted (think cauliflower and pears only) they could not gain their daily nutrients from their limited diets and had to have Naso Gastric (NG) Tubes (little straws that went down their noses into their stomachs) or Gastric (G) Tubes surgically inserted through the abdominal wall directly into the stomach. I was grateful that our kids had always been little trash compactors-eating anything that was placed in front of them with minimal, if any, complaints. There is a special EOS formula which is extremely expensive. 30 dollars for a little can that can fit in the palm of your hand. With insurance in our state there is 80 per cent coverage, bringing the cost down to 15 dollars a can. For insurance to pay, they have to go through a home-care supply company, and the cost rises to 75 dollars a can. And insurance would not pay if we bought directly through the supplier. Another frustration. Natalie was so thin, the doctor placed her on the formula for about a year. We received as many free samples as we could, but the cost was astronomical. Most parents who have one child on the formula pay the equivalent of a mortgage payment in monthly formula costs alone. We met one family at the conference that had 7 members on formula-only diets. The parents and each of their 5 kids. I have no idea how they could afford it. There is question as to whether EOS runs in families since some families have multiple members, but others do not. Neither my husband nor I have food allergies, but we have siblings that do. Maybe there is a connection there, maybe not. After a year on the formula, Natalie began drinking less and less of the pungent stuff. Thankfully she is blessed with tall genes having one uncle that is 6’9″ tall, and maintained her height curve to a satisfying extent, so the doctor told us we did not have to worry about forcing the formula down her anymore. What a relief for us all.
At the beginning of our allergy-free recipe quest, the creations tasted bland or noxious and smelled atrocious while cooking. We walked around with our lips curled in disgust and our stomachs turned inside out! Once we had to bribe Natalie to eat her special-made cookies by offering her two more helpings of broccoli! Everyone we spoke to when looking for recipes, even within the EOS community, ended by saying, “Wow. That sounds terrible. We don’t know what you can make! Good luck!”
The conference left me feeling emotionally drained and with a stress-induced migraine. Many had gone 4, 6, or 8 years before obtaining a diagnosis for their symptoms. We were blessed that it had only taken us 5 months. Kids volunteered to speak on panels for audience members to ask how they felt about issues and what they did to deal with it. One teen girl was no longer invited to slumber parties or dinner parties because everyone felt badly that she couldn’t eat. When she did go to parties, her friends would sneak off to other rooms to eat so she would not feel left out. But in the end she felt more left out than before. We learned that currently there is no cure for Eosinophilia. No hope that kids will outgrow EOS. 10 per cent will, and 10 per cent will go into remission for a few months at a time, but how do you know when that remission hits if you are avoiding all the instigating foods to begin with? There are other symptoms that are unexplained. Severe leg cramps that come on suddenly and have no specific cause or treatment; all the EOS kids experience this. Choking. Poor self image. Sneaking forbidden foods just to know what they are missing. We did get one piece of advice that offered hope: even if you only get one good recipe from a cook book, that is a good investment for your family. Embrace it and be glad that you have one more recipe to help you to feed your child.
Within the next two years we had multiple endoscopies and got to know the staff at the hospital well. Currently the only way to diagnose and determine treatment progress is through biopsy performed along the digestive tract under anesthesia. We also traveled to a children’s hospital out of state which had researchers working specifically on EOS. We were unable to have We had to say good bye to our dear hypoallergenic family dog (because after all, our allergist informed us, there is no such thing as an hypoallergenic dog since they all have saliva and dander) and hello to two new eliminations: beef and wheat. What was funny was that it really didn’t matter anymore. So what? Two more things to avoid. Bring it on. My son had since been tested and also added chicken to the list. Our meats were getting more and more limited. Thankfully God sent us some amazing hunters who blessed us with a freezer-full of elk and deer. We learned to develop a taste for it. And we still had turkey and pork. We began to request a sundry of kitchen tools as Christmas and birthday presents. And all the while we tweaked recipes and gleaned information whenever we could. Unfortunately all the gluten-free recipes we found contained either soy or corn or both. Oh well, we were learning to cook.
One day, right before my birthday in 2009, I happened to be listening to Christian radio and heard a woman speaking of cutting expenses from her family budget. She had felt God impressing her to quit her high paying job in San Francisco and stay home with her kids, but financially it was impossible. That is, until she began finding ways to cut costs in the family budget. One of those ways was creating recipes that allowed her to avoid buying expensive processed food. She spoke of making her own maple syrup, and my ears perked up. Genuine maple syrup was a huge expense in our scrawny grocery budget, but the affordable pancake syrups all contained corn. I called right away and ordered both of her books, devouring them when they arrived. Both books contained different recipes, and were a complete God-send. With over 200 recipes made completely from scratch, I was finally able to have a large variety and even introduce my kids to fun and exciting things I thought they would never be able to taste. Things like chocolate syrup, chicken broth that had no chicken in it, and donut glaze. It was providence that I even listened to that station on that day. I can’t pick up that station in any other room of my house, and I usually was in another part of the house at that time of day. Thank you God for small miracles!
God blessed our family with another child in 2009, and as soon as my husband and I found out we were expecting, we felt no small amount of anxiety. What would this poor child have to face as far as basic eating throughout his life? Turns out Sam had the same allergies as the first two, but he also added in garlic, pineapple and blueberries as well as his most favorite thing in the world. Bananas. The little yellow fruit was so important to him that he learned to say “Nana” before even mama, dada or milk!
Among our other losses, loss of kitchen space, loss of sanity, and loss of free time, we lost our ability to be spontaneous. You can’t just hop in the car and head out of town for even 2-3 hours unless you have travel food along. Planning for vacations out of town requires a week of meal preparation in advance and sometimes I have palpitations thinking of the possibility of a rice shortage in the country. But then I have to step back, realize that my kids are His first, and that He holds us all (and our plans and our menu) in the palm of His own nail-scarred hand. And He’s working everything out for His glory and for the good of those who love Him and who are called according to His purpose. I’d rather face Eosinophilia as a member of His family than millions of dollars as part of the Gates family. And I count it all loss for the sake of the gospel of Jesus Christ.
Best of all, we had the opportunity to adopt a precious special needs baby 2 and a half years ago. It turns out she has some major dietary restrictions and will not be able to eat processed food and will need a Mommy who can make her food from scratch. We prayed about it earnestly for 3 days but hardly batted an eye. Her needs were tough, but we were ready. God had been preparing us for that moment when we first heard of our little gem years before when we were dealing with the unknown of a devastating diagnosis. If we had heard of our little Anastasia 7 years before, we would have thought, “no way” and closed our minds to the consideration. Instead, we were able to open our hearts and welcome in a joy we never could have imagined.
We can’t wait to see what the rest of this journey will bring for us. Is each day a struggle? Yes. Are there times when I get frustrated and resentful of the difficulties my children and I have to face on a daily basis? Of course. It’s all part of the growing experience and allowing God to sanctify us and mold us more into a purified version of His image. And the best part of all? When speaking of heaven and the wonderful, perfection awaiting us there, my kids don’t look forward to eating whatever they want. They look forward to a day when they no longer fight and get to give Jesus a hug. What more could a parent want?