The Things I Would Do To Cure My Child

Rebecca Fishman Lipsey Special Needs

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I fed my kid poison today. Six times, to be exact. Sometimes a parent is willing to do the unthinkable to protect their child. Today was one of those days.

My five year old has a life-threatening allergy to nuts, and I'm not willing to wait for the FDA to approve an official course of treatment. He could die by then. Peanuts are in every stadium. On every airplane. They lurk in the shadows of play-dates and lunchrooms and I can't always be there with an epi-pen to save the day.

When most parents see a missed call from school, they wonder if their kid got in trouble. I worry that my kid is gasping for air. I call it pre-traumatic stress disorder. An unshakeable panic from the horrible thing that hasn't happened. The debilitating fear that one day my kid will taste that cookie that someone promises is safe. That he will be at soccer practice, and by the time the coach notices his face is swollen it will be too late. Every day of my life I wonder if I have loved him enough. It's a fear that can only be understood by a parent who can't protect their baby.

I'm willing to try almost anything to help him. And today, we tried eating poison.

We took a four-hour drive to Sarasota, to the only doctor in Florida who offers Oral Immunotherapy for children with severe food allergies. The research-based treatment involves feeding patients a microscopic amount of the very thing that they are deathly allergic to, and slowly building up their tolerance over time. We started with the equivalent of 1/1000 of a peanut or so. Over the course of the morning we upped the dose six times. A cocktail of Gatorade spiked with peanut infused liquid. My five year old found it disgusting. All six times.

In between each dose we'd wait…and wait…watching his face for a hive. A red patch. An itchy throat. It happened a few times. The nurse hugged me. Talked me down from the ledge. Reminded me that if I panicked, I could cause a larger reaction for my son. That was all he needed to say.

My son was scared. He found 5-year-old ways to tell me…like hiding behind the door, or dropping his cup. At one point he asked me if he was going to die today. I promised him I wouldn't let him die. And then I closed my eyes for a fraction of a second and begged God to make me right.

We stuck around for an hour after his final dose, and then went home with a vial of peanut liquid. For the next two weeks, I'll be giving my son a daily dose that is slightly smaller than what he was able to tolerate today. And if he makes it through with no reactions, we'll be back in Sarasota in two weeks to increase the dose. And again and again until he's finally eating several peanuts every single day.

If this works, he will still be deathly allergic to peanuts…but he'll be able to tolerate enough to protect him from accidental ingestion. He'll be able to eat things that “may contain traces of peanuts”. And I'll be able to sleep at night. His immunity will only be maintained if he keeps on taking that final dose of peanuts every day for the rest of his life. The irony of being saved by the very thing that is toxic to him.

This course of treatment, which is still being reviewed in the States, is commonplace in many countries around the world. It's well researched, and I paid my smartest friend to comb through every study with me, in an attempt to make the decision to do this any easier. It didn't. My insurance doesn't cover it, my local allergists don't support it, and frankly, I can't tell if this is yet another experience that will leave us uncured. The rates of success are good for those who complete the treatment, but many people drop out on their journey to the finish line. I wonder whether we will make it there.

I'm exhausted. Not just from eight hours of driving in less than a day. Not just from the emotional seesaw of hopes and fears that pulled at me today as I encouraged my son to drink the very thing I've been forbidding him to touch for his entire life. I'm exhausted from having to be this mom. The one who is fighting for her kid.

But forget me and my feelings…this is about my five year old. The one who ate poison today. Tomorrow when he drinks that disgusting liquid, there won't be any doctors on call to hold my hand. It will be us. Alone with our fear in the kitchen. And I will inhale, and exhale, and promise him that I won't let him die.

Please God, make me right.

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About the Author

Rebecca Fishman Lipsey

I'm a mother, a policymaker, and a social entrepreneur. I'm serving a 4-year term on the Florida Board of Education, and I run , an accelerator for social entrepreneurs.

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April 2016 – SUPPORT
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