E. Coli Infections Detection and Prevention Information

Part 2 by Laurie Girand

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If You Think Your Child Has An E. Coli Infection:

If you think your child has an E. coli infection, your investigation should have two focuses:

1. Determining whether your child has such an infection and
2. Investigating the source of the infection

DETERMINING whether your child has an E. coli infection:

Young children are most affected by E. coli infections and are in the most danger of possible complications. The primary symptoms caused by an E. coli infection are:

1. Diarrhea, which may be bloody, and becomes watery with time
2. Stomach cramps
3. A low grade or NO fever
4. Vomiting

5. ANEMIA, or a
6. SKIN RASH,

YOU SHOULD INSIST ON SEEING YOUR PEDIATRICIAN IMMEDIATELY, OR IF HE IS NOT AVAILABLE, GO IMMEDIATELY TO AN EMERGENCY ROOM. Anemia is characterized by the color draining out of the child's face. Lips and gums that are normally deep rose to red in color will become increasingly gray, and the child will become first irritable and then listless. Insist that medical professionals run the stool samples and blood tests recommended below, if they do not do them automatically. A rash appears as little red or purplish dots that don't blanch (clear) when you press on them. According to the New England Journal of Medicine, children under the age of two are the most at risk of complications; dehydration occurs more rapidly and can be more severe in younger children.

The stomach cramps caused by an E. coli infection distinguish it from a flu. They can be so painful as to wake the child in the middle of the night. A young, but toilet trained, child may have difficulty making it to the bathroom in time because of how much fluid is being lost. They will be going to the bathroom more frequently than every four hours.

However, some of these symptoms are difficult to distinguish from other forms of food poisoning that can cause similar, but not identical symptoms, such as Shigella, Campylobacter, Salmonella, and a number of viruses. A certain type of Shigella, S. dysenteriae, can cause the same complications as an E. coli infection, but will initially be treated differently. Also, over the course of the illness, some symptoms may disappear or be obscured. In Shigella, for example, the child may have a seizure or an initial high fever, but by the time the child visits the doctor, these symptoms may no longer be present. Therefore, diagnosing E. coli can be difficult.

Most parents would take their child to the Pediatrician's after two days of the first four symptoms, and that is correct timing. To be aggressive, as parents, we ask that at that first visit, YOU INSIST ON A STOOL CULTURE for

• Shigella
• Campylobacter
• Salmonella, AND
• E. COLI, including E. coli O157:H7

regardless of how bloody the stool is. Note that as of the end of 1996, clinical laboratories do NOT routinely do cultures for E. coli, despite the availability of an inexpensive test. By not screening all stools for E. coli, money is saved. In the August 10, 1995 New England Journal of Medicine, doctors recommended "Laboratories not already culturing all diarrheal stool specimens for E. coli O157:H7 should begin doing so. If only specimens of bloody stool are cultured for the organism, some infections will be missed... We recommend that all clinical laboratories screen for E. coli O157:H7, particularly if the stool is bloody." Your pediatrician may even think that he has ordered the test, when it has not in fact been ordered.

Catching and managing this disease early is critical to your child's long term health. While at present no antibiotics are known to stop an E. coli infection, dehydration can hasten complications along. The opportunity arises for misdiagnosis. For example, treatment with antimotility drugs, such as Imodium, has been linked to worse complications; and suspicion of appendicitis can lead to an exploratory surgery. Drug trials in which it might be possible to participate require detection within the first few days of the illness.

A stool sample routinely takes two to four days to complete. Should the stool sample come back negative for all four and the symptoms persist, you should insist on seeing your pediatrician again. Many times, E. coli is not cultured out of a stool. At that point, assuming your child is still showing the symptoms, YOU SHOULD INSIST ON SETS OF BLOOD TESTS:

1. a "CBC" (short for "Complete Blood Count"), and
   
   
2. those that check electrolytes and kidney function. Because a young child will have had frequent diarrhea for four days at this point, he/she will be nearing a point where he/she might need intravenous fluids.

If your child is determined to have an E. coli infection and appears to be developing HUS complications, as determined by the blood test results, YOU SHOULD REQUEST A TRANSFER TO THE BEST CHILDREN'S HOSPITAL IN YOUR VICINITY, specifically one with a pediatric nephrologist, a children's kidney expert. Very few hospitals are equipped to deal with the full range of supportive treatment required for HUS complications. Also, very few pediatricians have the "hands-on" experience to understand appropriate treatments. Therefore, being at an inexperienced medical center puts your child in the very real danger of being undertreated or overtreated.

Note that as of November, 1996, there is no cure for this illness. Treatment is known as "supportive"; in other words, doctors overseeing your child's case will continue to try to tip the odds back in favor of your child's healing. A very high percentage of these children, up to 98%, seen at major medical centers recover with supportive treatment.

As a point of fact, there is a blood test available at "reference laboratories," such as the Center for Disease Control in Atlanta, that can be run to determine whether your child has ever been exposed to E. coli O157:H7. Very few physicians know of its availability and due to the two weeks it takes to get results, the test presently will have little impact on your child's treatment. Unlike a stool culture which attempts to grow the actual bacterial organism, this test checks to see whether your child's body has tried to fight off an E. coli O157:H7 infection. Thus, while the organism may already have left your child's body like a thief in the night, its footprints may still be found. This is known as the test for "Antibodies to O157 lipopolysaccharide." It may be relevant to identifying your role in a larger epidemic with a known cause.

INVESTIGATING the source of the illness

There are three reasons why you would be interested in the source of your child's infections:

1. To determine what caused it and put your mind at ease (personal)
2. To help prevent an epidemic (social)
3. To assess responsibility (financial)

First, for the last 10 days, REVIEW

• the foods your child has consumed
• the animals with which your child may have come into contact
• bodies of water in which your child may have come into contact
• other children with which your child has come into contact

An E. coli infection has an incubation period of approximately 3-10 days with likelihood skewed toward the shorter period. Unlike previous reports, E. coli is now known to be found in foods as diverse as unpasteurized juices, melons, lettuce, salami, ground beef and milk products. Suspect all uncooked foods until proven otherwise.

Second,

• DON'T PUT OUT THE TRASH OR THE RECYCLING

In the October/November, 1996 apple juice epidemic, many parents threw away the bottles of juice which their children had consumed. Valuable information such as the lot numbers of the bottles were lost. You can go through your trash and recycling bins to find

- receipts for produce that you purchased,
- wrappers for different foods, and
- other containers that may be related

Set any evidence such as this aside immediately. Ideally, containers with residue of possible contamination should be placed in the refrigerator and clearly labeled so that no one else will consume them.

Third,

• CONTACT your county and state department of health

While many states as of November, 1996 have E. coli as a reportable disease (e.g., as soon as your doctor knows that there is an E. coli infection), many doctors will not report your child's illness until they have proven that E. coli is there. Unfortunately, due to the rapid spread of the illness and the difficulty of detecting E. coli as a source, you need to act as your own advocate. The questions you should ask your local health officials are:

• Are there any other cases going on in your county?
• Are there any other cases going on in the neighboring counties?

Often, counties do not speak with one another to determine whether an epidemic may be occurring. If your local health officials do not know the answer, insist that they find out. You could live in Vermont and be the first and only case there while 10 people in New Hampshire have gotten sick. You might also ask:

• Are any other states reporting epidemics at this time?

Unfortunately, present reporting mechanisms are virtually inadequate for your local officials to know the answer to this question. However, when this disease is made reportable to the CDC, the information obtained may point to a more widespread epidemic. Lastly, remember to ask

• What other things do those cases/epidemics have in common with yours?

Fourth, if you have not already,

• ASK FOR AN E. COLI O157:H7 BLOOD TEST IF YOUR STOOL CULTURE IS NEGATIVE

Many doctors and hospitals do not know this blood test exists. A stool culture can be superior in cost, time-to-results (2 to 4 days) and determining the genetic fingerprint of the infectious agent. However, due to the difficulty of culturing this type of E. coli, it can take as long as a month for laboratory facilities to give you O157:H7 results from a stool. The blood test, which can take two weeks, may be able to tell you that it was O157:H7 but not which kind.

Fifth, if a source is identified,

• CALL THE MANUFACTURER RESPONSIBLE AND NOTIFY THEM OF YOUR CASE

You may need to ask to speak with the CEO, but the more quickly you make your situation known, the more quickly the company may be able to respond. For example, a company might only be pulling potentially contaminated product off of shelves in your state, when they should be pulling it off the shelves all over the country. Likewise, the manufacturer should treat you with some compassion.

Sixth,

• ATTEMPT TO CONTACT OTHER PARENTS AFFECTED BY YOUR OUTBREAK

One of the most damaging results of a widespread, infectious disease is that it isolates parents in similar situations from one another. Doctors and health officials may not release your name without your permission; yet, you may in fact learn more directly from other parents than you learn from officials. You should want to have your privacy respected, but you should also know that silence enables the epidemic to spread further and faster than it would if information was well known. And because not all doctors are familiar with it, you may be able to educate them about the latest techniques and tests that you learn from others.

Lastly,

• IF YOU ARE ABLE, GO PUBLIC WITH YOUR STORY

Again, silence or retreat in the face of this infectious disease maintains the status quo of ignorance. Only when people understand the gravity of infectious diseases will something be done about it. E. coli infections are not just bad things that happen to other people because they eat at THAT fast food place, drink THAT brand of apple juice or swim at THAT watering hole. They can happen to anyone.

Continue on to Part 3