Challenges and Changes

On the first night when we were out of the hospital after E was born, I was beyond exhausted.  I had read about pregnancy, I had read about labor, and I had read about children.  Nothing prepares you for the questions you don’t know you’ll have until you have them.  Reading books about babies was like knowing that 42 is the answer but having no idea what question you’ve really asked.  I was exhausted the next day, and the day after that.  She couldn’t stay asleep.  Months later I would learn that the things I was eating were tormenting her.  The oat based lotions I was using after her baths were contributing to her eczema and not helping heal her skin.

I chased the idea that tomorrow would be better and my husband and I would remark to one another after she wanted to nurse after only a 15 minute break yet again that “at least she doesn’t have colic.”  If my life were a movie that would have been foreshadowing, but I am getting ahead of myself.

Other people didn’t seem to have the difficulties we were having and I was afraid to admit how badly I was failing.  I wasn’t being a good mother or a good wife.  All I could do was be at my child’s beck and call but it wasn’t helping.  I briefly attempted an elimination diet and saw some gains in the time my daughter would sleep before needing to nurse again, to comfort herself back to sleep when all she wanted to do was sleep if not for the constant need to scratch at her eczema.  I talked myself out of food being the problem.

I continued to chase tomorrow.  I didn’t savor the everything of her babyhood.  I wondered aloud to my husband if sleep deprivation was killing me, albeit slowly.  When it was time to start solid food, I thought, “maybe this will help her stay satiated.”  And then she wouldn’t eat the homemade brown rice mush I had painstakingly cooked.  I  read that oatmeal might be a more enticing first food and cooked up a batch only to find that she broke out into hives and was crying.  We didn’t know what to do, it hurts to try to recall what was going through my head because I view the past with today’s knowledge and all I can think is, “what if we had lost her?” because my husband left to buy Benadryl.  What was I thinking?!  And when the doctor in Winnemucca reluctantly wrote a referral to an allergist in Reno, we talked ourselves out of going.  The drive would be terrible with a screaming baby and we were about to move back to Las Vegas anyway.  The doctor had resisted our requests for a specialist’s help for so long that we didn’t think we should worry as much.  Even though when we tried store-bought rice cereal and she broke out into hives again (it contained soy lecithin as an anti-caking agent and frankly I have no idea if there was cross contamination in the pan I used to cook it…) we should have stormed into someone’s office and demanded answers, we just gave her Benadryl and were relieved when no new hives appeared.

Early parenting for me involved a lot of talking myself out of worrying, talking myself out of making a big deal of things.  If my daughter wouldn’t sleep, there was some magic combination of a “bedtime routine” that everyone wrote about that I was missing.  I attacked the struggles I was having as a caregiver by attacking myself.  What was doing wrong?  Why did everyone else have a baby that wasn’t miserable?  Again, I look back and am disgusted with myself for not asking for help, for not trying doctor after doctor until I got an answer.

The dermatologist prescribed medicine so that she wouldn’t itch all night and could actually sleep, as well as topical steroids to calm the weeping eczema she was struggling with.  This was at about 9 months of age and we were back in Las Vegas after a brief stint in Winnemucca.  She only woke three times the first night on the medicine and the next morning her cheeks were rosy, not rashy.  She was happier, I thought I’d figured it out at last and though I couldn’t bear to look at baby photos where her rash was painfully more apparent now that I’d seen her without it, I didn’t press for an explanation of what was going on.  I did avoid eating oats by this point and had stopped using the oat lotions after eating oatmeal had caused her so much distress, however.

She still wouldn’t eat solid food, though she toyed with the idea at times.  She wouldn’t sleep more than 2 hours at a time and even then she had to be nursed frequently.  With each new milestone she reached I wondered if things would get better for her and they didn’t.  One morning I was eating nutella (a chocolate hazelnut spread) on toast and E had a taste of it.  I thought nothing of it until she was acting distressed mere minutes later.  Her eyes were swelling, her body had hives, and I tried to call the pediatrician but the nurse advice line was just a voice mail box.  I couldn’t wait so I guessed at a Benadryl dose and hoped for the best.  She calmed down.  The swelling was still there but new hives didn’t appear and she fell asleep in my arms.  She napped for three hours and woke up in better spirits.  After this, our pediatrician gave us a lab slip to have her tested for allergies via blood test.  We went around Christmas of 2009.  E was 16 months old and I was 2 months pregnant with her brother.

No call came from the pediatrician so I hoped everything was fine.  I called in to follow up and left a message, only to miss the call back and have a frantic message on my phone not from the nurse but from the pediatrician herself.  She left her personal cell phone number, imploring me to call her and to just show up at her office first thing the next morning to get a prescription from her for an “epi-pen.”  She listed food after food after food that my daughter was allergic to.  When I called back she told me to ignore the front desk and come find her around the exam rooms at her office and the next day she showed me an epi-pen trainer, how to use it, and told me to avoid feeding E her allergens.  She gave me a referral to an allergist but had wanted us to be protected in the meantime.  At home, I started to empty my pantry of foods that were now off limits.  What were we going to eat?  

I avoided all E’s allergens and within three days she was sleeping better, eating solid food, and her skin was clearing.

The allergist couldn’t see us.  His schedule was too full, so we waited a few weeks and went in for further testing.  All the while I was hoping this was all a mistake.  I was reading about false positives from blood tests and wanted that to be our story as well.  Then the allergist couldn’t perform the test – his office had made an insurance error and not pre-authorized our treatment, so we were offered another appointment weeks beyond the appointment we’d already waited weeks for.  I was done.  I didn’t care how great this doctor was, I just couldn’t keep waiting.  We found another allergist and though he treated us rudely, his office did the insurance paperwork and we had E prick tested.  The wheals on her back seemed to confirm the blood test.  We were to keep avoiding her allergens and re-test in three years, before she entered kindergarten, but were told to try giving her milk, soy, and corn at home.

I tried her with the milk and her cheeks turned red.  I tried a corn tortilla and her cheeks were red again.  I wasn’t going to risk soy at this point and didn’t try it.  When the allergist’s office called for a follow up I let them know what had happened and was advised to keep avoiding those foods.

After R was born and had relentless colic, I took him to the same allergist to get him tested.  I wanted to know if I needed an epi-pen for my son.  The allergist wouldn’t perform the test, stating that we should just give him nuts or any of E’s other allergens at home and could just use her epi-pen on him if he had a reaction.  I couldn’t believe the lack of compassion I was hearing and decided we would not be returning to this particular doctor’s office.

Fast forward to 2013.  It was time to find a new allergist and I made an appointment for a new prick test.  There would be no test that day, it turned out.  The doctor reminded us that food challenges were the gold standard in allergies and eczema made it more likely that there would be false positives even in the prick test.  Was I really hearing about false positives again after reactions had occurred in the intervening years, after avoiding all these foods had made E a happier and healthier child?  They sent us for more blood tests – even though the initial blood test was not reliable in the allergist’s assessment, having the numbers as a baseline could help us see if there’d been any changes in E’s immune system.  E had tolerated grape a year before the appointment and we had tried milk and corn (please don’t do food challenges at home, by the way!) recently as well with no observable reaction and the allergist confirmed that if she could tolerate these foods then she was not allergic to them.

We tested wheat, soy, egg white, and egg yolk and the lab results indicated that egg was undetectable, soy was almost similarly undetectable, and E’s wheat numbers had gone down significantly.  The allergist wanted to do food challenges for them all and I trusted him and his P.A. as they seemed to really care about E and even would do food challenges for free at their office.

steamed edamame
Steamed Edamame

First was soy.  E had a fairly severe reaction a few days prior to a cat and I worried she’d have two reactions that week.  So I watched nervously as E ate some steamed edamame without incident.  We watched Rapunzel on my laptop as we waited for the one hour to be up.  It was surreal.  A few weeks later they tested egg and we watched dance scenes from Daddy Long Legs while we waited for the one hour timer to tell us it was time to go home.

Last week we tested wheat.  The one that still had appreciable numbers on the blood test but that our allergist and his P.A. felt was safe to test.  E bit into a wheat tortilla and nothing happened.  She ate a little more and was fine.  We watched half of Cinderella (her choice) and Harry Potter and the Chamber of Secrets (R’s choice).  Through all these tests, R ate his first bites of soy, egg, and wheat in his entire life.  We never exposed him to E’s allergens, it just seemed risky and my husband and I didn’t eat them in our family’s meals.  He loved everything he tried.  E liked the bread best and was indifferent to the others.  I didn’t try the egg when she offered it, opting at the moment to try to stick with a vegan diet though the kids and my husband eat a vegetarian diet.  I am not sure what the future holds on that front but that is a wordy ramble for another time.

We are elated, we are confused, we are relieved.  My daughter will enter kindergarten at this point with allergies to oat, sesame, peanuts, and tree nuts.  The allergist wants to keep testing but with less urgency since wheat, soy, and egg opened up so many options for the children.  We’ve become the people we envied, the people whose children outgrew some of their allergies.  Would this all be a vague memory to her in a few years?  Would she forget that for 4 years she didn’t eat wheat bread or couldn’t play with the same play dough as other children?  All these thoughts and more are going through my mind.

I wanted to share our good news here on the blog but also try to process, through writing about all of this, why I feel like I’ve failed my children all over again.  The testing and re-testing has brought up memories that are painful, that make me want to go back in time and get help sooner.  Why I didn’t fight harder for the first diagnosis, why we didn’t drive to Reno those years ago and see an allergist…why we waited so long to try another office here in Las Vegas.  I hope that if my children ever read this they’ll already know that parents aren’t perfect, that we didn’t even know the questions to ask, let alone the answers, but we love them very much and tried to do our best.

I also want them to know I’m so sorry.  Whether it is my genes, or the environment, or the food I ate while pregnant, or none of the above – I am supposed to keep them safe and I haven’t always been able to do that.  Food allergies are very much still a part of our lives, but to have our list narrowed so much makes us feel very fortunate and I hope that those of you that love someone with food allergies, or have food allergies yourself, get such good news someday soon.