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WHAT TO KNOW: 3 cases of infant botulism confirmed in East Texas

Health experts say if diagnosed too late, it could prove fatal.

TROUP, Texas — Infant botulism is a rare but potentially deadly disease. 

According to the Infant Botulism Treatment and Prevention Program, it is the most common form of human botulism in America. 

The program describes the disease as "ingested spores of the bacterium Clostridium botulinum colonize and grow in the infant's large intestine and produce botulinum neurotoxin in it."

When a child comes in contact with the toxin, it takes a toll on their bodies. 

Symptoms that could be signs your child has infant botulism include: 

  • Constipation
  • Loss of appetite
  • Droopy eyes
  • Lethargy
  • Hardness of breathing

"It produces paralysis, so the child is weak, they would have difficulty raising their arms, raising their legs moving about, and trouble breathing in a very shallow breath," University of Texas Health Science Center at Tyler infectious disease specialist Dr. Richard Wallace said. "Just anything that required muscular effort. So, usually, concerns about the respiratory disease are the main things that bring them to medical attention. It's not an easy diagnosis to make, because it's so rare. Even quality physicians sometimes put other things before it.”

If the disease is diagnosed too late, Dr. Wallace says it could prove fatal.

"It's potentially fatal, the muscles that by which you breathe, become so paralyzed," Dr. Wallace said. "And if you don't have supportive breathing, then you simply die of not enough oxygen. Now, if the child is really sick, they usually often go on a respirator, and they may be on the respirator for even several weeks until the toxin wears off. And they get the normal strength back.”

There have been three confirmed cases of infant botulism in East Texas and a Troup grandmother is sharing her experience only with CBS19 to make other guardians aware of the illness. 

Sheila Santiago's grandson's first month of life took a turn when he suddenly lost his appetite. Santiago says Anthony always had stomach issues, but not eating was out of the ordinary. 

“I was honestly thinking he might be getting sick," Santiago said. "The thing that kind of threw me off was most kids kind of gradually start to you know, start fading a little bit or whatever. What he did was he just completely stopped. I knew there was something going on, but it didn't know what was going on. It just seemed like he was okay one minute and then the next minute, he couldn't wake him. And it kept going back and forth."

Santiago says she would try holding a bottle in a different position to get him to eat, but it did not work. She then took him to the ER in Jacksonville and he was admitted overnight for observation. He was tested for many things, and everything came back negative. Anthony's became more lethargic as days passed, then Santiago requested for him to be taken to Dallas.

After many observations, Anthony was tested for infant botulism and the results came back positive. During the process, he was transferred to the ICU and was given oxygen and a feeding tube. Eventually, he developed temporary paralysis.

BabyBIG is the medication used to treat infant botulism and is only available in California. 

Thankfully, Anthony is now on the road to recovery. He has gained back his strength, but still gets his nutrients through a feeding tube.

Santiago says the most important thing is just getting Anthony through it all. She wants parents with newborns and babies under the age of one to be careful and aware of the symptoms before it is too late.

Elizabeth Ackley, also from Troup, has a son named Charlie who also developed infant botulism. Although his diagnosis was made sooner than Anthony's, the experience was still terrifying. 

"If your child is exhibiting symptoms, and you take them to the ER and you are not happy with what the doctors saying and they release you and your child continues to get worse, take them back," Ackley said. "You have a mother's intuition for a reason you know your baby more than anyone else in this world. If you know there's something wrong, you do not give up, you keep fighting. You keep taking them to doctors until someone will listen to you.”

To hear more from Dr. Wallace on the signs, symptoms and treatment process of infant botulism, click here.

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