Families complain of delays in caring for babies with milk protein allergies

To gain access to the cow’s milk allergy program, which provides patients with baby formula, babies with these food allergies need to consult with relevant experts. However, families complained of delays in getting care from the state health secretary’s program of Ceará (Sesa), which can be up to two months. As a result, to get specific milk for allergy sufferers, they have to resort to third party grants.

Since learning in March 2022 that his nine-month-old son, Paolo Jose, was allergic to cow’s milk protein, Fernandez Pontes, 41, has been searching for answers about when the baby will enter the state program. Like everyone else who needed care, Paolo Jose was taken to a health center in Fortaleza and forwarded on 22 April. However, the date of the appointment with the program specialist – who may be an allergist or gastroenterologist and a nutritionist – has not yet arrived.

“It simply came to our notice then. A month to get what you have for yesterday. We used the resources we had to buy cans and we had to go for something more extreme, “said Fernandez. R $ 240 After buying three cans in each and receiving four from family and friends, Fernandez’s wife and Paolo’s mother, Monis, told her son’s story on Instagram and asked for a grant.

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“One can is enough for three days. And when you find out (allergies), it’s coming from a crisis, because you have to take antibiotics, stay in the hospital and have a sick child who knows you’re going to spend it. It’s a shock, “Fernandez reported. With the request for a grant, the baby won 20 cans of Neocate milk, which will help supplement his diet until the May 19 consultation date, which includes soup and fruit.

Fernandez complains about the lack of information for families waiting to enter the program, both in the health center and in personal care. “Living with it, we have seen that there is a lack of information, even from professionals. They do not know how to give instructions or how to proceed, how to diagnose, how to treat, keep the child healthy and what to do about the alternative, ”he complained.

Also waiting for an appointment in March is one-year-old and six-month-old Noah Santos, another baby who is receiving breast milk through a donation. The mother, Karin Ellen Santos, 32, was a member of the Association of Relatives and Friends of Children with Food Allergy and Intolerance (AFAC) since she discovered allergies in her first daughter, now eight years old.

“What do you do if you don’t get a grant? Minimum term is two months, you can not less than. And not everyone has the condition to buy “, he said. Noah was diagnosed three months ago, when the boy had severe diarrhea due to exposure to cow’s milk and had to be hospitalized for dehydration.

According to AFAC President Alain Saraiva, at least 20 families have approached the association in recent months to find out if they are on the program’s waiting list. The financial crisis makes the situation worse for those waiting, as milk has an express value for the majority budget. “The situation we are living in today with the crisis, the unemployment, the high cost of everything, is not affordable. It’s not a formula to be sold in supermarkets, not every pharmacy sells it, it’s not easy for a mother in the countryside to buy it, “he said.

Alain said the association wanted to file a lawsuit through the state defender’s health center and seek help from the Sierra Brazilian Bar Association (OAB) Commission on Persons with Disabilities. The president also complained about the lack of information and communication with families waiting to enter the program.

Sesa denies the existence of the waiting list

Wanted by People Commenting on delays in caring for children, the state health department (SESA) said there was “no record of waiting lines”. According to the folder, 200 consultations are being offered for the month of May, 98 for Fortaleza patients and 102 for inpatient patients in the state. 160 were scheduled.

At Cesar’s record, patient Noah Santos had an appointment at the March 16 health post. Only on March 28, 12 days later, the baby was admitted to the control center to be sent to the state network. An attempt to contact the family to schedule an appointment was also recorded, without success. On Thursday night, the 12th, Karin received a call to schedule an appointment, as she reported. People.

In the case of Paolo Jose Fernandez, the advice was registered April 22 in the Health Post. On the 26th, the boy was admitted to the control center. The appointment was scheduled for May 10. Paolo should meet May 19.

The role of the municipal secretary of each city in scheduling appointments according to Sesa. In Fortaleza, the Municipal Health Department (SMS) reported that after consulting a doctor in one of the 116 posts in the capital, a technical justification was made and the person was referred to the program.

Nevertheless, according to Fernandez and Karin, families report a lack of information in health posts, the only adaptation being “waiting.”

In a note, the Secretary of State reported that the team supporting the enrollment in the program included seven gastropediatricians, 10 pediatric allergists, eight pediatric nutritionists, three nurses and one psychologist. “Currently, 3,337 patients are assisted by the program and followed by specialists”, according to the text of the note.

For 2022, the program budget is R $ 22 million. According to Cesar, the entire money was used to buy four types of baby formula donated by the program. 79,127 cans were distributed in the first four months of the year. As of April, the available funds had spent R $ 2,056,172.00, according to the State Transparency Portal.

How CMPA affects children’s health

According to Fabian Pomiesinski, an allergist and member of the scientific division of food allergy at the Brazilian Association of Allergy and Immunology (ASBAI), cow’s milk protein allergies can affect children’s development if they continue to interact with food. “She is more likely to be deficient in weight and height,” he explained. In addition, the supply of protein and other nutrients may be impaired.

According to experts, the number of people with food allergies has increased over time, but that is not the only reason. Fabian cites genetic factors that affect the condition, such as parental food allergies, rhinitis, asthma, as well as environmental factors, such as small families that are more indoors and out of contact with nature.

Fabian explains that allergies have two different mechanisms and, depending on which one is manifested by the baby, the symptoms can appear immediately, up to two hours after contact with milk or late, up to a few days after feeding. Symptoms range from hives, swelling of the lips and eyelids to respiratory and gastrointestinal symptoms and decreased blood pressure.

Sesa is one of the leading allergists in cow’s milk allergy programs. At the first appointment, he reports that blood tests or skin tests are performed. In some cases, the diagnosis is made by limiting milk and, after some time, by reintroduction. This procedure is called verbal persuasion test. Once the diagnosis has been confirmed, children are referred to get cans of milk suitable for those suffering from allergies.

Although special milk is recommended, according to Fabian, the food is not a medicine and does not treat allergies. “It won’t help the baby heal faster, it’s just a substitute for cow’s milk,” he said If the mother can feed the baby other foods and breastfeed, then according to the doctor, there is no need to take formula. Healing, in some cases, comes with time, and tolerance for milk develops as babies grow.

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