Arthur - A true lesson of life, love and overcoming

Arthur still has no diagnosis.

He spent his first year of life hospitalized and using cow's milk.

He was fed by a gastric tube because of problems with swallowing. In the first four months of life, when I still had breast milk, I used to spend hours with a breastpump hoping he would receive at least a bit of breastmilk but the hospital refused to keep the milk saying they didnt have the proper condition to keep and it was against the rules of the Agency (ANVISA ). It was very painful to see my milk being thrown down the drain several times so I decided to start drinking it praying my body would recycled it to come out again.

My mom (a pediatrician) and I fighted a lot for them to introduce a special formula for food intolerance because we were certain he could not tolerate cow’s milk, but the medical teams were adamant and insisted he had a severe gastro-esophagus reflux instead. That year he went through many problems, constant nasal and throat aspiration because of too much secretion, bronchospasm, he was intubated, and he had many apneas that may have caused irreversible brain damage.

During this first year, he was in two different hospitals and went through 5 surgeries. He was disillusioned by many doctors. Just to give a small idea of what I have been through, the head doctor of the first hospital asked me to seek for another hospital when he was 2 months old because "she did not want my son to die in the hands of her team.". All I heard was that my son was deaf, would never sit, never walk, would never have control of his head and probably would not reach the the age of five.

But faith can move mountains and miracles do exist - Finally we managed to stabilize him and had the possibility to take him home as long as we had hospital home care service.

A soon as he was transfered to the home care we managed to prove the doctors that he had a severe food intolerance (and that never showed up in any test) – the conclusion is only by clinic observation: only one week using Pregomin formula made disappear 90 % of the secretion, and the frequent apnéias also disappeared.

As soon as he started using the Pregomin formula (that tastes terrible), he also stopped accepting to be fed by the tube and started to lose weight. Due the difficulty of feeding him and his small gastric capacity, the solution presented to get him out of malnutrition was a gastrostomy to put him in continuous infusion of the formula - that would prevent malnutrition but would also discourage the use of mouth. Obviously, after living with all the problems of a colostomy for a whole year, the solution did not seem to be acceptable and proposed a "continuous infusion using the mouth."

I asked the doctor to calculate the ammount of day callories he needed and then we calculated the volume, the maximum concentration we could use the formula and what suplements could be added to increase the number of calories in such sxmall volume and ensure a greater number of calories per milliliter of diet (in Arthur`s case we used TCM AGE and Nidex). I stopped working and, along with my mother, began to feed him every 10 minutes, even during the night, in small quantities and we adapted the method according to his needs (hunger, sleep, weight, etc.).

And I took my child out of malnutrition. His weight is measured often, the daily calories are religiously calculated and registered on a special form I made for that. In this form I also record all types of food he tested and their reactions on him.

After two years of monotonous diet “eating” only Pregomin he was tested with a lactose free milk protein and showed skin reactions and bronchospasm – considering the result of the test, the doctor team that assist him ruled out from his diet any cow product, either milk or meat. They also forbidded lots of medicines containing substances resulting from the ox. Most of the medication he takes now is especially handled.

The consequence of this monotonous diet is also an illness called Neophobia - he refuses any other food (fruits and vegetables) that are being introduced gradually, one by one because many are not digested by him, others cause other reactions (severe constipation, severe diarrhea, gases, bellyache etc..). Everything has to be processed and mixed in milk considering also his swallowing disorder.

So, considering the Food Allergy, the neophobia, the swallowing disorder, the reduced gastric capacity, the little food he can consume must be processed, with no lumps and must be mixed with PREGOMIN for better acceptance. Without the Pregomin formula Arthur wont manage to reach his daily nutritional and caloric needs to survive. All the medical records show that Arthur depends on using the Pregomin formula continuously and for an indefinite period of time.

According to one of my son´s doctors, "5% of children do remain with the symptoms of food allergy after the age of 5. In general, these cases progress with allergy to adulthood and there are several cases of adults who cannot ingest cow's milk and derivatives, performing a selective diet of this food. " And my seems to be among the 5 % of these children. Although the hipoalergenic formulas are normally to be used in children, usually up to 2 years of age, many children and even adults may need to use the formula to have guaranteed their right to a dignified life, without suffering from malnutrition or absence of nutrients necessary to survive.

The new presentation of the formula PREGOMIN called PREGOMIN PEPT is not recommended for Arthur because it is another formula, and although hydrolyzed, its made of cow´s milk whey, being risky for children like Arthur.

The sudden information that the original formula of Pregomin is being withdrawn from the market by the manufacturer and the fact that the Pregomin Pepti (new formula on the market) can not replace the original formula for obvious reasons, shows how fragile and delicate is the situation of all children who rely on special formulas to survive. They are all hostages of their illnesses and the economic interests of the industry producing such formulas.

We need to find a similar formula to Pregomin (made of soya) to ensure not only Arthur´s life but also other children in similar circumstances. The suggestion of changing the formula by Pregomin Neocate, presented by Danone is a throwback, an absurd considering all development and progress made by Arthur, since Neocate is a more basic and extended formula and its long use has several effects including causing atrophy of the digestive system.

What will we do with our children that can only take Pregomin? Even if there is an equivalent formula children as my son will have to be hospitalized for testing and will have to go through a process of adaptation to the new formula - they are children with special needs, some of them have no understanding - we can not do an overnight change of the food (taste, texture, etc.) ... new food have to be tested for these children and it takes several months to adapt!

How can a company suddenly withdraw from the market a medicine product that guarantee the lives of many children? A car manufacturer when decide to withdraw a certain type of car from the market, have legal obligation to ensure maintenance and spare parts for at least 5 years!

Danone has the records of all dependents of formulas through their Program called Taste of Living and should have warned in advance about withdrawing the product from the market. The claim that they cannot provide information on behalf of the Legislation that prohibits the marketing of this products for protecting breastfeeding should be discussed and reviewed. Warn only the doctors who receive their promotional representants in a few clinics and hospitals do not exclude the responsibility and disregard to all children who are suffering from the withdrawal of Pregomin. Notice to the medical community must be done to reach every doctor, preferably using Medicine Reagional and Federal Concil. None of the great number of doctors who assist my son knew the formula was going to be withdrawn before it happened.

So in addition to protest the the sudden withdrawal of milk Pregomin from the market we need to open a discussion about the whole situation described and the responsibility of everyone involved: patients, consumers, suppliers, Anvisa Agency, Ministry of Health and reviewing legislation on the matter.