Knocking on Death's Door: Anaphylaxis

With you having your first full blown allergic reaction requiring medical intervention to derail the possibly life-threatening symptoms, I am hearing the same questions from friends and family,

• What was it like?
• Did Jahan swell up like Will Smith in Hitch?
• Was he gasping for air?
• Did it happen after one bite? 
• How fast did it happen?
• How did you know you needed to use the Epi-pen?

I want to address all of these. 

I had a conversation with your daddy on Sunday night that took me well past my 10:30pm bedtime when I asked him if he thought your reaction to a mere 281 milligrams of wheat was a wake-up call to him, would he have used the Epi-pen had I not been there? Would he have called 911, gone to the hospital, etc. etc. Daddy did not correlate the symptoms that your were having with having a severe allergic reaction. He didn't want to use the medicine and DID NOT want to go to the hospital.  Scary right? But why didn't he recognize the symptoms, why no Epi? Why skip the hospital? 

Your first symptoms included coughing, nothing crazy, but an obvious sign that there was something going on in your airway. That progressed to you vomiting, which is a great thing.   30 minutes went by and coughing began again, heavier, more frequent. Then itching, then throat itching. This is when I knew we had to intervene. There were clear signs of a systemic response and airway distress. Daddy did not agree with me. I pushed, we called and gave you the Epi-pen. Your symptoms stopped almost instantaneously. Wow - it was that fast. 

Daddy, like many people, including myself, thought that the reaction that would require medical intervention would be really fast, like in the movies, and it certainly can be, but it doesn't have to be. Daddy thought you would swell up, be gasping for air and turning blue. None of that happened, it could have, but it didn't get to that point. The reaction was slow, 45 minutes after ingestion to Epi-pen. Daddy also thought that the Epi-pen administration meant, we are in the clear, that's your parachute to safety, well sort of, but not entirely.  The epinephrine, which is the medicine in the Epi-pen, without getting too technical, helps to stop anaphylactic shock.  The medicine works almost immediately and then can wear off after 20 minutes or so and the reaction can persist. That is exactly what happened to you my love. When you got into the ambulance, about 20 minutes after you were given the Epi-pen, smack dab in your left thigh, the reaction began again. Head to toe hives, huge and small, red and clear. All. Over. YOU.

One of the hives - after Epi, Benadryl, Pepcid and Steroid. The size of my palm

Recovering in the hospital, scared, latching onto daddy

Daddy, like many, thought the hospital was more of a burden then a necessity, that was until he saw the post-Epi reaction begin.  The hospital would monitor your vitals, provide additional medicine (epinephrine, steroids, pepcid) to derail any further reactions. 

Anaphylactic shock can present itself in many ways, but a few take-aways for us, our family and friends:

• Allergies are no joke
• When giving new foods, pay attention for up to four hours for a reaction
• DO NOT WAIT - give the epinephrine before blue, swollen shut and knocking at death's door
• Go to the hospital post Epi
• Every reaction is different than the next and previous

Angel, recovering, you are so resilient Jahan

A Feat with Wheat is on the Menu

It's the cocktail hour prior to our cousin's wedding. Many of the cousins traveled from all over the states to be together and here we are at the big shebang in Chicago! All are dressed like they're at the Oscars, and not just attending, but actually receiving an Oscar, Angelina Jolie style. And all the cousins have been practicing for some time, to surprise the bride and groom with an Indian flash mob dance! So exciting, but yet we were all pretty nervous. We had some time though, and cocktail hour was sure to relax the mood.

You at the cocktail hour, loving that wheat pouch

Not so fast though.  I turn to you and  you are eating a baby food pouch, you love them, they are virtually baby-crack, but more healthy than that.

I look at the pouch as you suck every last drop out and my heart sank, panic set in.  The picture on the front has a grain on it, I grab the now empty pouch from you and turn it around to read the label. I briefly scan the ingredient list and boom, there it is, "Kamut (wheat)" - oh my goodness. How did I miss this?? I have never messed up before. I immediately grab daddy and tell him what happen. We decide to administer Benadryl before anything happens hoping to ward off any reaction.  You gladly take your "vitamin" - and then I go over to a little corner with you in my arms and cry. I deserve the worst mom-award of 2016! I feel terrible. How could I mess up when there is zero margin for error. Many cousins, some of which are doctors come and find me and give me some pointers to watch out for. Benadryl is kicking in and making you really sleepy, which it has never done before. It usually gives you a boost of energy. Now my little party-loving, dancing baby boy is passed out in your stroller and will at best miss the reception we have all been waiting for. The reception starts, dancing performances are on. I am watching your chest go up and down in a steady rhythm. This goes on for an hour. I feel terrible still. Our flash mob happens and the rest of reception goes on. I know everyone had the most amazing time at this beautiful celebration, but I screwed up. I did not enjoy these hours at the reception,  hoping and praying, watching you like an eagle scouting it's prey, that nothing would happen.

Sleeping in your stroller while the reception goes on

The reception ended, I took ouy up to our hotel and you slept, and I continued to watch. Nothing ever happened, which makes the allergy journey all the more confusing. Your iGe for wheat has hovered in the 30s and 40s, it's your highest allergen. But then nothing happened.

On mommy's shoulders at the Baraat, waiting for the groom

You and Daddy 

Fast forward a few months and an allergy appointment later and I get a call on Monday morning September 19th 2016, it's Hopkins.  The doctor tells me that they have researched the pouch and despite your high iGe numbers for wheat, they want us to try a wheat challenge at home. I am....over the moon, elated and scared.  Doctor gives me the protocol for the wheat challenge and tells me that had you not had that accidental exposure in April, we would likely not be challenging you. We would still be strictly avoiding.  So maybe I get a pass on this one, maybe I am not the worst mother of 2016.  Here we go...stay tuned for results!

Cuckoo for Coconut

So about two weeks ago, your allergist called with the annual update and surprised us with good, but scary news. Your coconut number is likely a false positive and to proceed with trying at home.

Wow - ok, daddy and I thought. It is one thing to talk about foods getting added to our "safe" list, but to actually go through the process of adding them requires quite the courage.  We actually have to feed these once taboo foods to you and hope and pray nothing happens all while being fully ready and capable to address any reaction, which has happened in the past very quickly.

Saturday morning now, a full 24 hours since Dr. Wood's scribe called - I went out and bought the coconut water and milk and was committed to feeding it to you my baby boy.  I got home and I pushed to start. Daddy was more reluctant.  He usually is with this sort of thing.  I put some coconut water in a Tylenol-like syringe and told you it was a vitamin, which you are all too familiar with and ironically gladly ingests.  Daddy and I wait. We wait a total of about five minutes, which is usually enough time for you to react. Nothing happens.  It's real now. After four hours, nothing happened. This is what it feels like - it feels about as good as that coconut water tasted. Ecstasy. Exhilaration. Freedom. You are clear to eat coconut in all forms!! This is a cause for a celebration - which I have been doing for about the past week.  I have been celebrating by buying and cooking all things coconut! Oil, water, milk, coconuts, oh my!


I thought I would share a few of my favorites from this week's meal plan - hope you enjoy as much as we did!

• Toasted coconut brussel sprouts
• Honey garlic butter shrimp in coconut milk
• Coconut chia pudding
• Avocado coconut chia pudding

That Dreaded Call

It's been a week. A week since your  last blood draw, probing for the latest and greatest, ok maybe not the greatest.

This is pretty standard protocol for someone with food allergies. Test the patient annually for new trends in the numbers, expose new allergies and sometimes, but not all that common, drop some allergens off the list.

This call for us has only ever been bad news. Actually all results from any doctor you have seen has always been bad news. More allergens should be added to the list. Avoid more foods. Your immune system is working on overdrive all day every day.  It's exhausting and temporarily depressing.

Daddy and I are curious where your numbers are now that you are two and your immune system is more mature and has been getting massive boosts from Dr. Wong's supplement protocol.

It's now been a week and a half. Friday morning, the phone rings and I know it is Hopkins because there is no caller ID. I answer, it's the doctor's scribe. The scribe takes all the notes and makes all the calls. She is also an MD.

She starts with, "La-Tasha, there are a lot of numbers, where shall we start?"

My heart is pounding, I'm thinking, "shit, what now?"

The scribe proceeds by asking if I have been giving you seeds like they suggested. Chia seeds, flax seeds, pumpkin seeds, etc.  No, I have not because I am SCARED! I am scared to give you anything new. When we give new foods, it must be on a weekend about midday. That way if you react, we are home and awake and can manage. She tells me I have to try the seeds, today. Once you have tried all of those seeds, try sunflower because that number came back low. Woohoo, small win there since we thought sunflower could be a new allergen. Now we have homework.

Then she tells me that coconut came back very low and there is likely no allergy anymore. We have been avoiding coconut like the plague for a long time. I am beside myself with glee, just imagining the possibilities with adding a new food. Coconut milk, and water and oil and yogurt and ice cream!  She tells me to try it at home and the medical team is confident you will tolerate it with no reaction!  More homework.


Next she tells me, you will need to come in within the next year, to Hopkins to challenge peanut! Your numbers are so low and following overall decreases to most allergens and because of risk of anaphylaxis they will feed you peanuts in the hospital setting while monitored and under the doctor's care.  The good news keeps coming - This. Is. Unreal.

We chatted for a few more minutes and concluded the call with a summary. Your numbers are decreasing for many items, but he is still highly allergic. Seeing overall reductions in a two-year old is a trend that points to a high likelihood of outgrowing many of these allergens.

I hang up and just sit there.  That dreaded call wasn't. It was delightful.  A flood of emotions continue with all this amazing news.  This is the first time that I feel real hope that you will be ok. We will get thru this.

Now it's time to try our new foods! Coconut, we are coming for you! 

Sometimes You Feel Like a Nut

Sometimes you feel like a nut...so you eat it. Not my sweet Jahan, no nuts for him, at least not yet.

Jahan is allergic to tree nuts and peanuts among many other foods. Today Dr. Wood, yes the renowned Dr. Wood, provided a glimmer of hope in the allergic world in which we live and have lived for almost all of Jahan's two years of life. "Coconut and almond appear to be false positives, but we will need to confirm with a blood sample."  I know what you're thinking, "who is allergic to coconut, it's hypoallergenic?!"  Jahan is or wait maybe he was...allergies are complicated!

And off we go to get labs done. This never gets easy. Jahan does not appreciate being dealt the allergy card thus resulting in recurring pokes and prods. Jahan has had many many blood draws, more than me through both of my routine pregnancies.  Today was good, it was a successful draw which included only a few tears coupled with tortuous shrieks.  I know soon those wretched screams, welled-up eyes and that flailing toddler body will become more subdued during these all too common procedures.

The aftermath, REM covered with banana bread crumbs