Today, I want to write about my third child, who is two and a half and has severe food allergies.
I have been through three allergists with him. The first allergist told me that basically I was crazy even though he skin prick test showed him highly allergic to peanut, dairy, egg and rice. Because my son reacted to my breastmilk - this allergist thought that was highly unlikely. He refused to give my son an IgE blood test and told me an EpiPen was unnecessary. Seriously? So I switched allergists.
Here is a picture of the rash around his mouth that would not go away.
Since my son had a peanut allergy, I went to the peanut allergy guru in our area. This doctor refused a skin prick test because my son had one 6 months prior and refused to skin prick test him for any different foods, even though he was only tested for 6 foods. He did however, did run a blood test on those foods that showed up on the skin prick test and the results were remarkable. My son was off the charts for peanuts, dairy & eggs and moderate for rice. Again, I was treated like an idiot by this doctor for wanting more testing for different foods and he basically told me not to be so paranoid. He did however; issue an EpiPen once those blood tests came back.
I was still not happy because my little guy did not sleep well at night and he started to get constipated. He had a rash around his mouth that would come and go even with removal of these allergic foods.
So when it was time for his next appointment, a year later, I switched doctors again. This time, the doctor listened and I could see him get more and more concerned as I listed our family’s history of environmental allergies & asthma, our Eosinaphilic Esophagitis and food allergies. He did another skin prick panel and I begged him to include things like soy and wheat and tomatoes, which he did. He ordered a full IgE blood panel including a TOTAL IgE to see how bad the problem was. Total IgE came back at almost 500, which is extremely high for an almost 2 year old. And the blood panel showed he was indeed severely allergic to wheat in addition to all these other foods. Once I removed wheat from his diet, he began to sleep better – finally! And we no longer needed the steroid cream for the constant rashes around his mouth.
So I finally knew where we stood. But I didn’t know how he would react if he got peanuts or dairy or eggs because he had never had them outside of in my breastmilk. Well….once, he ate a bite of a cookie that had egg baked into it and he vomited 5 minutes later. But, other than that, I was clueless. The allergist told me he was likely to have an anaphylactic reaction if he ingested egg or peanuts but no one could be sure. He made me understand that I was to have Benadryl and an EpiPen everywhere we went.
This is hard for me to write because the experience is still fresh in my mind and heart and because it was so very scary. I still lie in bed every night before I fall asleep thinking about it and wondering what is going to happen next time.
It was Easter Sunday and we were at a beach house for the week. Thankfully, my parents were there too for a rare visit. I bought my kids dark chocolate eggs for their Easter baskets. None of them can have dairy but the ingredients said:
“Contains soy. May contain peanuts, tree nuts, milk, egg.”
I thought this was okay because my 2 year old son had eaten things that said “may contain milk or egg” or “made in a facility that processes nuts” before.
I was wrong.
After dinner, the kids got into their chocolate and I was sitting at the table talking to my parents not paying much attention to how many chocolate eggs my son was eating. I told my husband that was going to take the kids down the beach for a walk and he happily agreed as he did the dishes.
However, as we were out there – my son started coughing. I bent over to see him in the windy, cool evening and saw that he had sand in his mouth. I thought that was why he was coughing and decided I needed to get him inside – then suddenly & thankfully, my husband showed up. I asked him to get Xander inside to rinse out his mouth. He scooped him up and I brought the girls in.
When I got inside, my husband said, “Kelly-he doesn’t look so good.” Xander was coughing. But also doing this weird thing like he wanted to throw up but nothing was coming up.
My mind flashed to a blog I read a week earlier about how the coughing can be difficulty breathing and I dashed upstairs to get the Benadryl just in case. I syringed it into his mouth and he swallowed. We continued to try to get him to drink water but he could only speak one word at a time without coughing.
I pulled him into my arms and tore his shirt off him to watch his breathing. Then I saw it. A rash was spreading across his torso. He was itching like crazy.
I looked at my husband and said, “Oh shit – he’s having an allergic reaction – grab the EpiPen & the keys – we gotta go!”
We were in the middle of nowhere and I had no idea where the nearest hospital was. My mom reported that there was an Urgent Care right up the road, so I jumped into the driver’s seat and headed that way.
I made Chris watch his every move in case he needed to use the Epi, but Xander was starting to cough a bit less now…the Benedryl was taking hold but he was still squirming like crazy because he itched. The Urgent Care was closed – of course – it was Easter night.
My husband’s iPhone was only reporting animal hospitals nearby. We passed a cop waiting for speeders and pulled over to ask him where the nearest hospital was. He called EMS because he said they could get here faster than we could get to the hospital.
So there I was…..pulled over on the side of a country road….my minivan door open to reveal a very itchy little boy that was coughing less and less now but being very good watching his TV show in the backseat.
My adrenaline started to wear off as we waited for EMS and I started to shake. It was a windy, chilly night and I failed to grab a coat and was still wearing my flip flops from earlier. I felt like my knees could buckle and the tears started to stream as I realized the worst was probably over.
I kept thinking, “How can I live like this?” “How can I live thinking that the next bite of food could kill my kid? - My adorable, sweet, loving, smart and funny 2 year old blond boy?”
Anyway – EMS came and indeed his lungs sounded much better – only a little wheezing, but we headed off to the hospital 30 minutes away just in case.
That night, I slept in his room, next to his crib and woke every few hours to be sure he was still breathing well.
I have lived through the scary parts of autism with my oldest child and lived through my middle daughter not being able to eat….but this was different. It was FAST. And it scared the hell out of me.