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

To obtain access to the cow’s milk allergy program, which provides an infant formula for patients, children with these food allergies need to consult with a specialist. However, families complain of delays in receiving care from the Ceará (Sesa) State Health Secretary’s program, with periods reaching two months. As a result, to get specific milk for allergy sufferers, they have to resort to third-party donations.

Since discovering that their nine-month-old son, Paulo Jose, is allergic to cow’s milk protein in March 2022, 41-year-old Fernandez Pontes has been searching for answers about when a child will enter the state program. Like all those in need of care, Paulo Jose was taken to a health center in Fortaleza and was dispatched on April 22. However, the date of making an appointment with a specialist in the program – whether they are an allergist or a gastroenterologist and a nutritionist – has not yet arrived.

“It’s been a long time. It’s a month to get what it was yesterday. We used the resources we had to buy the cans and we had to go for something more intense.” Mother Monis told her son’s story on Instagram and asked for donations.

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“One double a day is enough for three days. And when you find out (allergy), it’s coming from a crisis, because you have to take antibiotics, stay in the hospital, and you know the sick kid is going to spend it. It was a blow, ”reported Fernandes. With donation requests, the child won 20 cans of Neocate milk to help supplement her diet, which includes soups and fruit, until the consultation date on May 19.

Fernandez complains of lack of information for families waiting to enter the program at health centers and private care. “While living with this, we have seen a lack of information on the part of professionals too.

Waiting for an appointment from March, Noah Santos, aged one year and six months, is another child who receives milk through donations. Her mother, Karin Ellen Santos, 32, is a member of the Association of Children’s Relatives and Friends (AFAC) with food allergies and intolerances, who have now been diagnosed with allergies in their first daughter, aged eight.

“If you don’t get a donation, what do you do? At least the period is two months, you can’t. And not everyone has this condition.”

According to AFAC president Alain Saraiva, at least 20 families have been looking for the association to report that they have been on the show’s waiting list in recent months. The economic crisis worsens the situation of the waiters, as milk is of value to the majority of the budget. “Today, when we look at the crisis, unemployment, and the high cost of living, it is not affordable. It’s not a formula that is sold in supermarkets. Every pharmacy doesn’t sell it.

Alain says the association intends to sue the state’s Defender’s Office of Health Care and seek help from the Disabled Persons Commission of Ceará’s Brazilian Bar Association (OAB). The president complains of a lack of information and communication with families waiting to enter the program.

Sessa denies the existence of a waiting list

Wanted by People To comment on delays in child care, the State Department of Health (SESA) said there was “no record of waiting lines.” According to the folder, there are 200 consultations available for May, 98 for Fortaleza patients and 102. 160 for patients in the state.

In Sesa’s records, patient Noah Santos had an appointment at the Health Post on March 16. On March 28, 12 days later, the child was admitted to the control center to be sent to the state network. An attempt to contact the family to schedule an appointment has also been documented, unsuccessfully. On Thursday night, the 12th, Karin received a call to schedule an appointment as stated People.

In the case of the Palo Jose Fernandez, consultation was registered on April 22 in the Health Post. On 26, the boy was taken to the control center. The appointment was scheduled for May 10. Should see Paulo on May 19th.

The role of scheduling appointments, according to Sesa, belongs to the secretary of the municipality of each city. In Fortaleza, the Municipal Health Department (SMS) says that after consulting with doctors at one of the capital’s 116 posts, a technical justification has been made and the person is referred to the program.

Despite this, families report a lack of information in health posts, the only view of “waiting” according to Fernandez and Karin.

The Secretary of State reports that seven enrolled in the program are seven gastropodiatricians, 10 pediatric allergists, eight pediatricians, three nurses and psychologists. “Currently, the program helps 3,337 patients and is followed by experts”, according to the text of the note.

For 2022, the program’s budget is R $ 22 million. According to Sesa, the entire amount will be used to purchase four types of infant formula donated from the program. In the first four months of the year, 79,127 cans were issued. As of April, R $ 2,056,172.00 was spent on available funds, according to data from the State Transparency Portal.

How CMPA affects children’s health

Allergist Fabian Pomisinski, a member of the Scientific Section of the Food Allergy at the Brazilian Association of Allergy and Immunology (ASBAI), said allergies to cow’s milk protein can affect children’s growth if they continue to have contact with food. “She has a higher chance of developing a deficiency in weight and height,” she explains. In addition, the supply of proteins and other nutrients can be impaired.

According to experts, the number of people with food allergies has increased over time, but there is only one factor. Fabian cites genetic factors that influence the condition, such as food allergies, rhinitis, parents with asthma, as well as environmental factors, such as small families living more indoors and out of touch with nature.

Fabian explains that there are two different mechanisms of allergy, and depending on what is expressed in the baby, symptoms can appear immediately, up to two hours after the contact with the milk, or as late as the days after ingestion. Symptoms range from hives, swelling of the lips and eyelids, respiratory and gastrointestinal symptoms and a drop in blood pressure.

Doctors are one of the allergists who care for children through the Sasa Cow Milk Allergy Program. At the first appointment, they report that blood tests or skin tests are done. In some cases, the diagnosis is made by blocking the milk and refilling after a period. This procedure is known as oral stimulation testing. Once the diagnosis is confirmed, the children are referred to receive allergy suits that are suitable for allergy sufferers.

Although special milk is recommended, according to Fabian, food is not a drug and does not serve as an allergy treatment. “It doesn’t help the baby heal faster, it’s a replacement for cow’s milk,” he says. If the mother can feed the baby with other foods and breastfeed, it is not necessary to take the formula according to the doctor. Healing, in some cases, comes with time, as children grow and develop tolerance to milk.

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