No more steak: Lawrence teenager struggles with tick bite that made him allergic to red meat

In third grade, Logan Branam awakened with a huge swollen lip.

 

At that rough-and-tumble age, Logan, now 14 years old, said his parent’s thought maybe he accidentally hit his head. But still, it was “huge,” and Logan’s mother, Carey Branam said she’d never seen anything like it. She piled him into the car to go to the emergency room, but even on the way over, it began to look better. A doctor there said it was probably an “idiopathic” allergic response, meaning one that has an unknown cause or happens quickly.

Then it happened again. And again. A couple of times a year, Logan would come out of his bedroom in the morning with a swollen lip, and not just a small swelling. Huge.

Six years later, Logan and his family, who live in Lawrence, know exactly what is causing his lip to swell. He was diagnosed with what is referred to as Alpha-Gal, short for Galactose-alpha-1,3-galactose. In nonmedical terms, Logan is allergic to red meat, a condition he acquired after being bitten by a Lone Star tick.

This summer, Logan’s reactions worsened. He began to get hives; his cheek would swell and, even one time, his tongue, which scared Branam half to death.

The family tracked what Logan was eating, once determining he was allergic to citrus. Another time, they decided the culprit might be a sudden onset of a peanut allergy.

“It was progressing. It was happening more frequently. It was involving different parts. Sometimes the Benadryl doesn’t work,” Branam said. “You know what I found out since? Benadryl has mammal byproducts in it. Here we are giving him something that he’s allergic to that’s supposed to help allergies.”

The answer to their quest to solve Logan’s mysterious allergic reactions came at the University of Kansas Health System. Doctors first did standard allergy scratch tests, which came back negative except for two allergies, one of which was to cats. But even those two were minor positives, meaning that doctors measure the area tested to see how big the welt is, and Logan’s were very small.

“Then the allergist was like, ‘There’s this other thing that it could be. It’s really rare,’ ” Branam said. A simple blood test later, and Logan found out he would have to stop eating red meat.

Which he loves.

“I’ve never really liked chicken or turkey,” Logan said of the meats he can eat now. And he’s definitely not a vegetable fan.

Still, he’s not tempted to go ahead and eat red meat.

“It’s not that hard to not cheat. I want to eat meat, but I know I can’t because it can go into my throat,” he said. That feeling was scary, he added.

But he also can’t have many candies because they have gelatin in them, a mammal byproduct. No more gummy candies or taffy, for instance.

Branam has joined several support groups online, talking with others who have Alpha-Gal. Many recommend that all mammal byproducts be cut out, including dairy. But Logan’s doctor, for now, has said to focus on eliminating red meat and not to worry as much about the byproducts.

“We’re not going to force him to eliminate everything. That’s just a lot for a 14-year-old,” she said.

Still, it might be necessary. Since cutting out red meat, Logan has had two more reactions from seemingly harmless meals. The challenge, also, is that the swelling and other problems show up three to eight hours after eating, which means they have to trace back everything he had eaten from the day before.

A recent meal of salmon and a baked potato left Logan with a swollen lip the next day. He’d had two glasses of whole milk. Could that have been the culprit? Another reaction came after going to a salad bar.

“The only thing we can think of is maybe somebody used the tongs from the bacon, Branam said.”

Unfortunately, there is much left to learn about Alpha-Gal, including why some people bitten by the Lone Star tick get the condition and some don’t, said Allen Kossoy, M.D., an allergy and immunology physician at the Cotton-O’Neil Clinic.

Alpha-Gal syndrome can be difficult to detect because of the delay in allergic response that Branam discussed, he said.

“The other thing that’s unusual about this, unlike most allergic reactions, which are pretty quick to respond, this you can have an allergic reaction that’s late,” he said. “That’s what makes it difficult to make the correlation with a reaction in the middle of the night after dinner or lunchtime.”

Alpha-Gal is rare, Kossoy said; he is treating four or five patients with the allergy in his practice. Although it seems to anecdotally be getting more common, that could be because it’s been in the news.

“We very commonly get patients who come in who do have significant life-threatening anaphylaxis (allergic reactions),” he said. “And we don’t have a reason why. What you’re left with is treating those with an adrenaline device at all times, Benadryl, and this that and the other, and waiting. Sometimes you figure it out down the road.”

Kossoy said the Alpha-Gal allergic reaction is severe and can be life-threatening.

“As far as we can tell, it’s lifelong,” he said. “They have to avoid red meat, pork, lamb, beef, venison — all of those have to be avoided. I’ve got one guy, every year, he calls me and he’s driving me crazy. He’s a BBQ guy, and he competes at BBQ things I said, ‘Look, dude, this is how it’s going to work.’ ”

The theory behind how Alpha-Gal is developed is that the Lone Star tick bites another mammal, say a deer, and then it attaches to a human to feed, said Clifton Jones, M.D., Cotton-O’Neil infectious disease specialist.

“When a tick bites a human, there’s some reflux of whatever the tick has inside its gastrointestinal tract,” he said.

The body attacks that new material as foreign and begins to fight it off.

At this point, research is unclear why some people develop the red meat allergy and others don’t.

Vanderbilt doctor Cosby Stone, M.D., did offer some hope for Logan. He told a Vanderbilt news service that over time, it seems as if some Alpha-Gal patients can tolerate small amounts of red meat.

“We aren’t sure if the patients get ‘better’ or develop a tolerance of more mammalian product consumption on diet alone, but I do see that after two years of diet many are able to tolerate some level of mammalian product consumption,” Stone said.

But unfortunately for Logan, Stone also said that some patients may have to avoid dairy milk.

Branam hopes the medical community will make strides in understanding Alpha-Gal and that Logan will eventually be able to eat meat.

For a teenage boy, constantly being on guard and reading food labels can be embarrassing.

“I’m not really normal anymore,” he said, but then added, “Like, I never was, but I’m not going to be able to eat stuff that everybody else can. And I have to read everything every time.”

For Branam, the emergence of this allergy has spiked all of her protective instincts.

“It freaks me out,” she said. “The biggest thing that scares me is he sleeps really heavy. And it’s like an overnight allergy; it always happens overnight, except that one time. My fear is, if it continues to get worse, what about that time it is anaphylactic. And how am I going to know? Is he going to wake up? My husband’s a nurse and he’s like, ‘yes, he’ll wake up.’ Do we need to sleep with the door open? What do I do when he goes to college? I don’t know.”

She’s worried Logan will forget to take his AUVI-Q, an epinephrine injection that is small and can fit in his pocket. And Logan nodded. He’s forgotten it before.

Branam is hopeful there will be more labeling on food products. She and Logan are just learning how to read labels to look for gelatin and other mammal byproducts. On the Facebook boards where she gets support, many are calling on the FDA to require the labeling.

“There is just not enough research and science,” she said. “He’ll say to me, ‘Am I ever going to get to eat meat again?’ You look at your kid and don’t know how to answer that question. I want to say ‘yeah,’ but I can’t tell him that. I don’t think they know.”

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