Parenting a toddler is tough enough without having to worry about every little thing they put in their mouth, but if we want to keep my son comfortable and his allergies under control, that’s exactly what we have to do. As tedious and arduous as it may be, it’s worth it to see him healthy and thriving for the first time since he was born.
When Harrison was born, he was almost a nine pound baby. I marveled at his appetite right from that first day. He was a cluster feeder, nursing for hours at a time without more than a few minutes break. It didn’t surprise me when his weight began to climb during those initial few months of infancy. The boy liked to eat.
Then, after introducing solids at the age of six months, we began to see the exact opposite happen. It started when I began baby lean weaning by offering solid foods to Harrison in the form of small chunks and bits of solid foods, not purees. After several weeks with not much progress, and at the recommendation of our pediatrician, I changed my methods and began offering purees and cereals. To no avail, he didn’t take any of it.
After months of attempting to feed him solid foods in addition to nursing him several times a day, we began to think there was something else to blame for his pickiness. In addition to Harrison’s lack of weight gain, he was experiencing a very harsh bout with eczema. We visited our pediatric dermatologist who recommended occasional oatmeal and bleach baths along with slathering him multiple times a day with ointments and creams to keep him lubed up and moisturized. .
In the meantime, I attended breastfeeding support groups where I learned about tongue and lip ties and how they prevented older infants from expressing enough milk from mama’s breast. At this point, I was convinced this was the issue. Then we saw a doctor who examined his ties, and concluded his problems were most likely due to something else. One potential problem/solution was eliminated from our list. Back to the drawing board.
At the request of our pediatrician, we made an appointment with our first specialist. The gastroenterologist ordered a round of blood tests and a swallow study immediately and asked for us to see him as soon as the results were in. We were unsuccessful in the performing the swallow study, due to the fact that our little man refused any and all methods of feeding that didn’t involved my breasts. However, the blood tests revealed Harrison was sensitive to wheat, cow’s whey, egg whites, corn, barley, oats, and peas. We immediately eliminated all of these foods from both his and my diet. I continued to breastfeed him and offer approved foods with little to no success.
In an effort to explore other aveneus, we found another pediatrician through a new friend of mine in my running group. Dr. Bowers was great from the start. She asked how she could help us and I asked for a referral to an allergist and dermatologist. We then saw Dr. Convers and completed an additional round of blood work. This round concluded Harrison was highly sensitive to peanuts, tree nuts, soy, and dogs. I had been eating lots of these items in addition to having a cute little fur ball.
After elliminating those new allergy foods from both his and my diet, I then decided to give up my dog of eleven years. We had the carpets professionally cleaned and prayed for a turnaround.
By February, 2016, nearly nine months since we first learned of his allergies, Harrison had yet to double his birth weight. At 18 months, he weighed a measly 16 pounds. In addition to his failure to thrive, he was suffering daily from bouts with extreme eczema. We would wrap his hands with socks to prevent him from scratching himself. It was and is still a constant battle. He would wake in the middle of the night screaming and clawing at his scalp, ankles and hands. We would apply ointments and vaseline multiple times a day to moisturize and soothe his dry, itchy skin.
In April, my husband and I decided it was time to do something drastic. We called Johns Hopkins children’s hospital and began to explore some programs dedicated to food allergies and extreme eczema in infants and toddlers. We talked about taking Harrison to the hospital for a month-long treatment of ellimination diets and other treatments. In the end, we decided there were other methods to attempt before we went that far. We made the difficult decision to wean Harrison – something I was afraid to do because I feared decreasing his calorie intake.
In May, my mother-in-law came to stay with the children while hubby and I went away on a four day trip for the Denver marathon, then again for a weekend getaway to Mexico. During our time away, and after I returned without nursing Harrison, we began to notice some major changes in his appetite. Harrison began to eat voraciously. He went from ONE or TWO meals a day with a couple snacks, to THREE full meals, an insatiable appetite and an incredibly advertuous curiousity for food.
Harrison’s skin went from constant breakouts to only periodically suffering itchiness and dryness when not moisturized. Now his worst flare ups only occur after his immune system is weakened while suffering from a cold or infection – a sad normality we have come to accept with his condition.
Our most recent panel of blood testing – which took almost five weeks to complete due to a very unwilling and rebellious patient- revealed he is highly allergic to environmental allergens such as grass, mold, dust, dogs, cats, oak, and pine trees. It did also reveal that he has absolutely no metabolic concerns, nor does he suffer from colitis or gastroenteritis. Amidst all the blood tests, food trials, breastfeeding support groups, elimination diets, eczema flare ups and doctor visits, I’ve finally found enough room to breath. I’ve found a moment to wipe away my tears and say a prayer of gratefulness for the relief that we have found. I’ve found myself loving this child even more than I could ever imagine. Some days, I find myself stroking his little fingers. The same fingers that I used to have to cover with socks and medical tape. I snuggle his soft skin up against my face and wipe it on my cheeks. I kiss his upper lip where he used to wear a raspberry scab almost daily.
I know that this is only the beginning in our journey. Harrison is young and adventerous and he has a voracious appetite for not just food, but for life. His curiousity may be the death of me, but I will allow him some freedoms to explore.
Looking forward, I have learned to accept that I will most likely be “that” helicopter parent who hovers at birthday parties and picnics, prepared to snatch away any food that looks suspicious. I have embraced the notion that I will no longer be the “whatever you have will be fine” guest at a party. My devotion to keeping my child safe will probably keep me from relaxing when we are out at gatherings, afraid of what he may find on the floor or be offered from an unknowing parent or child. I often wonder, if it should ever occur, if I would recognize the signs of anaphylaxis in time to save my son’s life. I wonder if I would react quick enough to find his eli-pen and sweep him up in time to make it the four miles to the hospital in the case of an anaphylaxis reaction. I wonder if my child’s caretaker, babysitter, Sunday school teacher and sibling would recognize the symptoms if he struggles to breathe. These fears keep me up at night and haunt my dreams. And yet, I know that I am not be the only one to carry the burden of looking out for Harrison’s well-being.
The doctors have said they are hopeful that he will outgrow his allergies before his fourth birthday, however, it is not certain. There are additional factors in determining the probability of outgrowing his allergies that you can read about here.
One thing is for sure. However frustrating and difficult his life will be, I am humble and thankful to know that his illness, even though it can be life threatening, is one hundred percent manageable. And that is exactly what we are doing. We are managing. Every day, every meal, we are managing.
As of today, I am happy to report that after nearly a year of struggling to feed my son, he is finally gaining weight at a decent rate. Over the past two months he has gained four pounds and he has grown nearly two inches. He is still at the bottom of the growth chart, but his recent progress puts him ON THE CHART finally. His skin is clearing up and he’s happily sleeping through the night without interruption.
Living with these conditions is not easy for him or us. And yes, it makes parenting a toddler so much more difficult, but when the day is done, he is just a toddler and I am just his mama and we are just trying to do our best.
For anyone wondering, here are the methods we have been using to treat Harrison’s condition and keep him healthy. Obviously, I am not a doctor or medical professional, so I can not recommend these , but only share what has worked for us.
1. Strictly Avoid Food & Environmental Allergens
We rarely eat out in restaurants or when traveling. We constantly read labels and ask dozens of questions if someone else is preparing his food items. EVERYONE gets twenty questions from mama bear. I don’t care that I am a pest or that I come across as a PITA to anyone. I have to advocate for my son’s wellbeing and this is the best way to do it.
DON’T ASSUME EVERYONE ELSE IS READING LABELS OR UNDERSTANDS BASIC FOOD INGREDIENTS.
Just because you know that cheese is considered dairy, doesn’t mean the next person realizes that. Dairy is in so many items. Basic food knowledge is not basic for everyone, so it’s extremely important to see and read labels for yourself. If you do eat out, ask to speak to the chef or manager about your child’s allergies. Most restaurants can accommodate by preparing food separately from the rest of the table. Educate yourself and know exactly what your kid is eating.
2. Carry Epi-pen Everywhere and Have an Emergency Plan When Eating Out
Plain and Simple. Know where it is at all times. Train your spouse and all caretakers in proper use and make sure everyone is aware of nearest hospitals and emergency rooms. Every minute is crucial in the event of an anaphylactic reaction.
3. Use Zyrtec Daily to Control Body’s Reaction to Food and Environmental Allergens
One of the best things we’ve done for our son is administering this daily to help control his body’s reaction to his allergens. As much as we control his diet, we cannot keep his environmental allergens away. This has helped us tremendously.
4. Continue Daily Skin Care Regimen
Keeping the skin moisturized and lubricated well reduces the effects of eczema. The more hydrated and moisturized the skin, the less itchy and irritated it become. We’ve struggled in the past with applying creams and lotions, but we’ve finally made a game out of it, so Harrison is more apt to allowing us to apply his ointments and creams.
5. Utilize Benadryl Whenever Necessary
Don’t be afraid to offer Benadryl often. We sometimes give it to our son multiple times a day. We used to worry about the effects it would have, but it’s completely harmless (according to our allergist) and won’t hurt our son. In fact, if he is having a relatively itchy day, we will offer it every four hours to keep him from tearing his skin apart. By preventing the itching, we are preventing him from potential infection. An open wound on an active toddler is not easy to keep clean. There’s definitely a trade off somewhere.
6. Keep a Food/Activity Journal
If you think there’s a possibility that your child has multiple triggers, be sure to keep a food journal and include activities with any environmental exposures. For weeks, my son reacted after we went to the playground, then we noticed it only happened when we went outdoors to certain parks. Now we know he’s allergic to the grass and dust that is present on the mulch in many playgrounds, so we had to change up our habits and avoid certain playground. It’s a lot of work and it gets tedious, but if you do your diligence, you’ll discover the culprits eventually.
7. Watch Your Child Like A Hawk Around The Dinner Table
One day I learned, only through the indigestible remains in Harrison’s diaper, that he had helped himself to the leftover corn from my plate on the table. I still don’t know how he got to them, no doubt by climbing onto the table somehow, but had I taken my plate to the sink instead of leaving it on the table, he wouldn’t have endured a reaction due to eating one of his food allergens. Thankfully, he is only slightly sensitive to corn, but the outcome could have been a lot worse.
Hopefully some of these tips are enlightening to some. If you have any questions about our methods, feel free to leave a comment below and I’ll try to get back to you as soon as possible.
Did your child or you ever suffer from food or environmental allergies?
What methods worked for you?