OUR FOOD ALLERGY STORY | PART TWO

 

Read OUR FOOD ALLERGY STORY | PART ONEPart Two:
After our third son was born in November of 2010, we started to notice a head to toe rash that was all too familiar, developing when he was 2 months old. For the 8 weeks prior his skin was flawless (photograph above) and he was sleeping well at night.

I knew in the back of my mind that food allergies could be the cause, obviously, but I was hoping it wasn’t. My allergist in Chicago suggested to wait a few more months before the RAST test because it is not nearly as accurate at such a young age. Instead, she mentioned eliminating again one or two foods. His rash was different because it would definitely come and go. It was really severe some weeks, and would mellow out for a week. It was somewhat inconsistent, unlike my middle son’s symptoms.

I wondered if perhaps it was an environmental allergy to something he was in contact with. So I decided to change to a more mild detergent first. The entire process to eliminate an allergen, environmental or food, is so time consuming and there are so many variables that it literally can drive one crazy. I was on that path as I tried a different detergent one week, then a different soap, even a filter on our bath water. I made myself so stressed out. I honestly wanted to selfishly relax with my baby. I knew that I most likely wouldn’t have a 4th baby, and so I just wanted to not worry about these things. I wanted to enjoy the days of just he and I, while the older boys were in school. These were incredibly long weeks of a progressively worsening rash and a more and more uncomfortable baby.  Nothing was making a definitive difference in his patterns of rashes and welts. And because it was a different pattern than my older son’s symptoms, I focused on contact allergens as the culprit. I called my friend Diana who I became good friends with after connecting when my middle son was sick. She helped me again by suggesting things to try. She was also incredibly empathetic and visited me in Chicago, all the way from Nashville.

I also noticed that upon a visit to my mom’s house in Ohio, that his skin condition became noticeably better. How confusing. Between my mom and my friend Diana, we thought maybe it was her water filter. So, of course this led to me going back to Chicago and installing a water filter on the bath tub. When that didn’t improve things, we bought filtered water at the store for bathing! I mean, can you tell how desperate again I was to heal him? And how much I was thinking it could be environmental? It became consuming and exhausting. It was hard to wait it out the full two weeks each time I tried something. I felt that I needed to just eliminate everything and anything. I was also continuing to eliminate foods one by one slowly. But if you do this, again you create too many variables for the experiment. (I suppose my husband and I were putting our science degrees to good use.)

At around four months old, his skin reflected a more severe situation, as you can see in the photographs. It covered his body. He was also starting to wake up screaming in the middle of the night and throughout the day in pain. My allergist called me one evening after an appointment earlier in the week, at 10:30 pm to check on me. She knew I was stressed out and she was worried about us. She knew that I wanted to try and go through all the possible environmental allergens while waiting it out for the RAST blood tests, and she knew the process was wearing on me emotionally and physically. She knew I wasn’t sleeping, he wasn’t sleeping, I was barely eating and was in tears in her office. This is when she suggested we go ahead and do the RAST blood test just to see if anything was positive at this young age. In addition, she ordered a CBC and she suggested several treatments for his skin to get it under control. Some of the suggested treatments blew my mind: pharmaceutical grade peanut oil (!?) and bleach baths (?!)-  and of course steroid creams and ointments.  Again, my instincts were to try any natural treatments first, then move to low-medium % cortisone creams as needed.

When the results came back, the RAST didn’t show ANY food allergies present. However, the blood work showed that an allergic reaction was indeed happening and altering his eosinophils to a dangerously high level. Eosinophils are white blood cells that are part of the immune defense system. They are key components in inflammation from allergies and asthma. She said that her instinct with these results still pointed to severe food allergies. I remember her saying “You have done this before, you can do it again. You know what you need to do”, which was the elimination diet. She was a strong advocate for continuing to breastfeed, and suggested I do not slowly eliminate food after food. I was instructed to do a hardcore elimination diet, starting that day. She wanted me to do this for four weeks, and then we needed to recheck his blood work.

I went home and cried. Again? Really? I paid my elimination diet dues, right? It felt isolating to have this new baby in the blustery, cold months of winter in Chicago, with no family around, and a husband who was commuting over an hour one way to work in a stressful job. I also had two boys in two different schools that I shuttled to school and back home twice a day. I felt exhausted just thinking about it. But I pulled myself together and realized that it was true, I have done this before. I am thankful that this, all of this is manageable. So I went on the turkey, rice, pear, grapes, potato, broccoli diet. I used the most basic soap, lotion and detergent on him. I was even cloth diapering and he wore organic clothes. He wore hand mitts religiously and was swaddled tightly for naps and at bedtime to try and help him not scratch. I even sewed a few onesies shut at the hands (as my friend Diana did for her oldest daughter) so that his skin would not become infected from scratching and kept cotton hats on him to protect his raw skin. He was still screaming and uncomfortable at night, itching from the inside out.

Nothing changed in his skin for those long, four weeks. But the blood work showed an astonishing result: the eosinophil levels were completely reversed and now normal  after a month of the elimination diet. My allergist said that was enough evidence to her that this was a similar case to my middle son. We would recheck the blood work for food allergies at 9 or 10 months of age. In the meantime, stick to the diet and heal his skin and gut.

Deja vu. This was definitely a milder case than my older son, if you can imagine, but equally upsetting.

And his skin did respond to my strict diet. And after 2 months on the diet, he was healed with the exception of a spot near his eye. This was a considerably quicker healing time than my older son, who it took 9 months to heal, versus 2 months.

My baby would occasionally flare up a little, because I have to admit I became a little lax on the diet when he was 6 months old. By lax, I mean I ate a tomato once in awhile, had coffee with coconut creamer and ate Indian food that I prepared at home. The biggest allergens I did not eat ever this time around (same as before) were: soy, corn, wheat, eggs, milk, dairy, nuts and sesame. By the time he was 9 months old, we did a repeat RAST blood test. My allergist called me herself (as she often did, even after hours at home) and told me the results. I was standing in Whole Foods and remember writing it down: “severely allergic to eggs, and positive for soy, corn, wheat, milk and nuts” and she paused and said “the egg level is extremely high, one of the highest we have ever seen” and I started to cry. For some reason I thought maybe she would call and say that the results were simple with one food, and I definitely did not want to hear highest level to anything. My sister’s anaphylactic shock reaction at a year old was to egg and my mom rushed her to the hospital herself, no epi-pen in hand, as I watched at only 4 years old.

My allergist comforted me and said it will be manageable and we will retest him again in another 6 months. She said the results were not as varied as my middle son’s and more importantly the baby was already healed by my diet. More recently, we found ourselves gearing up for a move. My husband had taken a job back in Ohio. The one sad thing was leaving my allergist. Everything else was a full circle moment that had us back to a community we knew, close to my family and it felt like coming home.

We have now been doing this for 7 years. Some days it feels normal, and other days it definitely does not feel routine. I hate that a food could end a life, a life that means more to me than my own. It is so hard to wrap my brain around that, still. There isn’t a day that goes by that I don’t think about the seriousness of what it means to have food allergies and for two of my small children and their safety.  Introducing new foods to a baby is a complete nightmare that almost causes me to have a nervous breakdown. I remember that time with my oldest being so much fun. I would watch him smile with new carrots all over his mouth, snapping photos to document. Now, with the younger two, we watched and stared at their every breath, checking their skin, supervising them until 30, then 45 minutes passed. We watched for a reaction, signs of trouble breathing or their throat swelling shut. To now let my child go to school, or be away from me without my protective, watchful eyes is a real leap of faith and often brings me stress, even after a few years.

Mealtime has taken on a completely new meaning around here, and just until recently has been quite a feat. We have finally adjusted to cooking several different recipes for each meal. We are trying to have fun in the kitchen again!  I have always loved to cook and bake, and we love to share meals together. I have to say that no matter what, we are blessed with overall healthy children. We are blessed to have had great care. We are blessed that I could heal their pain and symptoms through my diet, without a lot of medicine. We are blessed to have many supportive family members and friends when it comes to mealtime or holidays. We thank God every day for these blessings.

Do you ever stop and look at the path of your life and realize that despite the difficulties or obstacles, that you are supposed to be where you are, doing what you are doing in that moment? This is where we are as a family.

If you made it through this long story, thank you for reading it. If you know someone who could benefit from this story or food allergy support, please share it with them or re-post it.

 

14 comments

  • August 26, 2012 at 9:50 pm // Reply

    Joya,

    Thank you for sharing Rohan and Ravi’s stories. I know your experience and advice will bring much support to other parents facing similar allergy issues with their children. I am going to forward your site to my sister asap. Her son (18 months old) has developed severe food allergies (peanuts, soy, peas, watermelon, vanilla, citrus, banana etc…..). They are still in the midst of trying to determine all of the foods that trigger a reaction. Just when they think they have it figured out, a new reaction occurs. I think reading your incredible story will help her a lot. Seeing your boys happy and healthy is so wonderful!

    • August 26, 2012 at 9:58 pm // Reply

      thanks Laura for reading it! yes, please pass it along to your sister (and my email) because that is exactly why I decided to share in detail what we went through and how we manage it all now. it is a long, frustrating and exhausting process, but it is manageable.

  • October 3, 2012 at 9:33 pm // Reply

    My youngest son just turned 3 this week and has multiple food allergies–tree nuts, eggs, peanuts, wheat, dairy and sesame. He as a rash on his stomach now and I am suspecting allergies to coconut, chickpeas and cherries. What products do you use on your clidren’s skin? I am struggling to find products without tree nuts/coconut.

    • October 8, 2012 at 11:15 am // Reply

      Hi Leslie,
      We have been through lots of skincare products, and with each child and their set of allergies it was different. I always try natural products first and my go to brands are Babybearshop.com and California Baby ultra sensitive, which my two older boys and myself use and LOVE. My friend Diana who started babybearshop is a mama to two allergic daughters. She can tell you about the ingredients, which are pure and organic. My youngest was so extremely sensitive that we ended up with Cetaphil bar soap as his body wash and shampoo, nothing else. I use Aquaphor and Cerave cream on him after bath as a protection layer. I use Vanicream SPF 60 sunblock on everyone in our house. We use Allen’s Naturally Detergent, no dryer sheets, no fabric softener. We are pretty minimalistic. I hope that helps. -Joya

  • April 14, 2013 at 4:53 am // Reply

    Thank you for sharing this story. I am sitting here at 2:00am because today, my 2 year old son, had hives on an off at a family gathering. Last week, a rasberry on top of a cake led him to have swollen lips and cheeks at a resort, while we were vacationing!

    It’s been really tough, seeing him wanting to eat things like normal kids, but he cannot have apples, peas, carrots, peach, and hte list goes on.

    We are still struggling and trying to figure out what is causing him to have these severe reactions to food and I keep on trying different things. Have you found skin allergy tests or probiotics to be useful?

    • June 11, 2013 at 3:59 pm // Reply

      Simmi- yes food allergy tests (RAST blood test) is a helpful tool in determining which foods are causing a reaction. Also I did use Probiotics while breastfeeding and I am not sure the extent to which they helped.

  • June 11, 2013 at 2:48 pm // Reply

    Hi Joya,
    Believe it or not, NONE of my friends who are Moms have kids who have gone through a kid-who-has-allergies situation and I’m a bit at a loss. I remember seeing this post a long time ago and I just went back and read both parts. My 4 month old, Owen, is suffering from some type of allergy and is experiencing (although not nearly as severe) symptoms like these. Red, rough, dry skin patches – mainly on his cheeks (which are getting better), stomach/chest and back. He isn’t fussy all of the time, but has difficulty settling down to nap or sleep. He itches and scratches his face and scalp to the point of bleeding. His stool is almost liquid/mucusy and has been tinged with blood at times. (Sorry if that’s TMI). I’m exclusively breastfeeding and I’m currently on week two of no dairy. Long story short, we’ve seen our Ped Doc who wasn’t too concerned… prescribed cream for his rash and encouraged me to cut dairy. I have an appt with a Ped allergy specialist in July (he’s super hard to get into hence waiting until July).
    So, I’m basically at a loss of what to do. Am I asking the right questions? Doing the right thing? It’s so frustrating because I know nothing about food allergies as neither my husband or I have allergy issues on our sides of the family.
    Any advice would be appreciated!
    Thanks,
    Katie :)

    • June 11, 2013 at 3:57 pm // Reply

      Katie, Sorry to hear your little one is going through possible symptoms of food allergies. It definitely sounds like he has some sort of allergy to a food, especially with the stool changes and eczema. You are doing the right thing by continuing to breastfeed, eliminating dairy and making an appointment with an Allergist. Other possible foods that are more common allergens and can cause skin/stool changes in breastfed babies are: soy and eggs, then nuts, wheat etc. You may try to eliminate one at a time for a week at least in addition to dairy. And try your best to eliminate all traces of the allergen in your diet.
      For my little ones skin, I used topical cortizone ointment and aquaphor as a barrier at this stage. I kept those cotton baby mitts on their hands to keep the scratching from harming the skin. Just know that it does get better with food elimination IF that is the cause. Also know that if your allergist orders blood tests (RAST) they may come back FALSE negative at the young age. Ravi’s test was negative at 4 mos old for everything except his Eosinophil levels (which were very high), but had significant positive values for a few different foods by 10 mos. Email me anytime joya@rajovilla.com
      Hang in there! xo
      Joya

  • July 18, 2013 at 9:15 pm // Reply

    Thank you so much for sharing. I just had my 9 week old tested for allergies and everything came back negative. After doing elimination diet for less than two weeks her rash has cleared along with no fussiness, more bowel movements and more sleep. Now I know it’s not just in my head and she may actually have allergies that aren’t showing up yet.

    • July 18, 2013 at 9:31 pm // Reply

      Andrea- I’m so glad you also commented, for more people to see this confusing pattern. So happy your baby is showing less symptoms. Hang in there!! xo Joya

  • December 13, 2013 at 3:22 pm // Reply

    Thank you thank you for posting your story. I am not alone. I have never confronted something as frustrating and consuming as this. We have been struggling with skin issues looking very similar to your son I see here. It started when my daughter was 2months and is 6 months now. Elimination diet (4things) and removing all detergents from my house has not helped. I laughed at the water filter/bottles for bathing. Done that. I’m not the only crazy eczema mom out there! Gets better then comes back but always painful itchy uncontrolled. Why why why. I ask myself every day. There MUST be a reason. The science in me won’t accept ‘it just happens for no real reason’. No one listens. Will not refer to allergist. I have a degree in immunology and biochemistry and recently trained as a medical lab tech so i consider myself reasonably informed. The RAST is ‘not an option’ according to my Dr. at this age (who is convinced by food and/or environmental allergy theory is crap). The CBC is what really intrigued me. Eos levels are something I haven’t thought about. After reading this has solidified what I already feel I need to do. A stricter elimination and push push push for allergy testing. I am from Canada and the medical system works differently here, however. At what age (if ever) did you get atopic allergy testing done on either or your boys? Also, we’re your boys basophils increased as well?
    Again, thank you for posting this. This insane puzzle is still big but sometimes I see something like your post and it feels just slightly less overwhelming.

    • December 13, 2013 at 4:35 pm // Reply

      Hi Anna,
      Thank you for writing. You are not alone! It is so frustrating and such a puzzle. I, like you, come from a medical family and science degree. Eczema is not just random or from dry skin. So many physicians and families just treat the symptoms, whereas I wanted to find the cause and eliminate it. Which is exactly what I did with the diet and testing. And it worked.
      I definitely think it sounds very similar to my experience. The RAST test may not even show anything at this point (6 mos) and that may be why the Dr is refusing the test or doesn’t believe that it could be food allergies. But, thankfully with my experience I can at least tell you that my Allergist in Chicago said that even with a negative RAST (results from my youngest were negative initially) that there still could be a food allergy. And there obviously was. I do not know about the basophils. I have the paperwork and can look and see. Atopic testing was done for my now 8yo at 4 mos (welts everywhere and inconclusive) and again at 9-12mos. My allergist for my 3yo said the atopic test has false positives and the results can be inconsistent. She was an advocate of elimination diet, then RAST testing yearly starting around 10 mos old.

      Feel free to post any more thoughts or questions. I’m sorry that it is overwhelming and makes you feel crazy- I certainly felt that way with both of my boys over the last 8 years! But I trusted my instinct initially and it was right. Hang in there- it does get better as soon as you can eliminate the allergen(s)! And every year, my boys grow out of an allergy, which is truly amazing.

      -Joya

  • January 26, 2014 at 2:22 pm // Reply

    Thanks for the insight. We are just recovering for a trip to the ER after what

    i believe to be an egg allergy. My son is 7 months and covered in a that terrible rash, I am so nervous that he has a lot of allergies. We head to the allergist in a couple weeks.
    thanks again, it is nice to read about others experiences. Melissa

  • April 21, 2014 at 5:46 pm // Reply

    Thankyou for sharing,
    the picture looked like my daughter.
    i will watch what I eat, had bit citrus, fish, and coffee, and with warmth of greenhouse could have caused 8 mnth yr old Tulsea to get itchy today, and her rash to redden, that hasnt spread, is scabbing.

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