Arthur is having intermittent episodes of ear infection (otitis media) since the past 9 (nine) months.
Previously, during the period he was doing monotonous diet with Pregomin, Arthur never had otological problems even though he loved to swim and spend the entire summer in the pool.
The Infections coincide with the inclusion of few fruits and vegetables into his diet.
According to the otolaryngologist the repeated otologic infections presented by Arthur suggests food intolerance and can even can be linked to the use of pesticides. Therefore, it was recommended him to return to the monotonous diet with the elementary hydrolyzed soy formula (Pregomin) for subsequent retesting with the inclusion of individual foods, using exclusively organic foods.
The situation is serious because we only have enough Pregomin till December/2010.
Saturday, 23 October 2010
Arthur - A true lesson of life, love and overcoming
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."
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.
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.
What are the REAL reasons for replacing Pregomim by Pregomin Pepti?
Many people are still seeking information about the sudden change of Pregomin (an extensively hydrolyzed formula based on soy and collagen) to Pregomin Pepti (hydrolyzed formula based on cow´s milk whey ).
The Blog of Bahia Association of Parents and Friends of Children With Food Allergy published a newsletter sent by Danone explaining their reasons for the replacement (http://abapaa.blogspot.com/2010/09/substituicao-do-pregomim- per-pregomim.html) here translated:
"Dear Dr (a).,
Danone Baby Nutrition, always thinking in innovation and development of new products that meet the latest dietary recommendations adapted to the special needs of infants, reports the withdrawal of the product and its replacement by Pregomin Pepti. Such a substitution has been done in all countries where the product is marketed.
What are the reasons for replacing Pregomin by Pregomin Pepti?
• Pregomin Pepti meets the recommendations of recent national and international Medical Societies, which did not recommend the use of soy-based formulations due to the high content of phytoestrogens (isoflavones), aluminum and phytate, with possible deleterious effects on neuroendocrine development.
• Pregomin Pepti is the hydrolyzate formula more used worldwide, a product with a history of more than 25 years in the world market and with scientific documentation of its efficacy and safety.
• Because it is produced on a large scale, Pregomin Pepti has lower cost and allows us to sell it as a more affordable product.
• Pregomin Pepti contains MCTs, ARA, DHA and nucleotides, important nutrients for optimal digestion and absorption of fats, best visual and neuromotor development, as well as increased production of immunologically active cells, higher levels of antibodies, a lower incidence of diarrhea and increase in iron absorption.
• By virtue of its greater density, Pregomin Pepti has better performance in relation to the other hydrolysates Pregomin and the market.
• Pregomin Pepti has better flavor, and acceptance, proven in studies to facilitate acceptance to treatment. The reasons for its better taste are the presence of 100% maltodxtrina as a source of carbohydrates, the presence of extensively hydrolyzed protein 100% whey as protein source, as well as advanced production technology.
In order to assure a transition period of patients who are currently using Pregomim, the product will remain available for sale at the Taste of Living program, by calling 0800 727 8027, until the end of August 2010.
We also ensure that there wont be any problems to supply to states and municipalities where there are contracts for Pregomim in its old formulation.
Sincerely,
Claudio J. Sturion
Luis Marcellus Smith "
From now on, I would like to propose some reflections on such information:
1) Pregomin Pepti is equivalent to Nestle's Alfaré and MeadJohnson´s Pregestimil. They are hydrolyzed formulas made from cow´s milk whey. So it does not attend to the same public that is in need of the Pregomin hydrolyzed made from soy and is unable to use the hydrolyzed cow´s milk whey.
2) All the criticisms made about the use of soy, especially by American and European authorities are
well known (high content of phytoestrogens (isoflavones), aluminum and phytate, with possible deleterious effects on neuroendocrine development) - and it still does not justify the withdrawal of only a certain product which uses the hydrolyzed soy (highly fragmented) when there are so many other soy products, including NAN SOY, ADES juice and lots of others food made from soy ... non fragmented soy and that are even known for causing cross-reaction in all children who have an intolerance to cow's milk and beef products in general!
3) Most children dependent on Pregomin (hydrolyzed soy) will be forced to "migrate" to the Neocate, involuting from a semi-elemental formula to an elementary formula, fully hydrolyzed formula. It is known that prolonged use of Neocate (a highly hydrolyzed formula) causes atrophy of the digestive tract. For children that already have progressed from Neocate to Pregomin previously, IT IS A MAJOR AND VERY NEGATIVE HEALTH SETBACK, but, for Danone, it probably means the largest gain since the Neocate is much more expensive and the profit of the company is surely greater.
4) What is the real reason to withdraw a product (Pregomin soy-based) that has no similar product on the market and replace it with a product (Pregomin Pepti -based on cow´s milk whey) that has two other similar competitors like Alfaré of the Nestle and the Nestle's Alfaré and MeadJohnson´s Pregestimil?
5) Considering the well known damages caused by soy... surely everyone that depend on the soy to survive prefer to face the risk of its use than to face death by malnutrition. Therefor, I suggest the use of mandatory consumer information such as those used in cigarettes and in bottles and pacifiers, "Warning: Smoking is harmful to health" and "Warning: The use of bottle, nipple or pacifier affect breastfeeding. "
FINALLY, I would like to remind everyone that if Pregomin formula made of soy is no longer
used by Support/Danone company and so many depend on it, nothing prevents us to
break the patent and produce the a generic formula in Brasil considering:
a) Brazil produces and exports soybeans;
b) Brazil is one of the major importers of hypoallergenic food in the world.
c) We import Pregomin and Neocate, we pay R$ 200.00 to R$ 500.00 per can.
d) We are always stocking up with the fear of a strike in Customs and delaying shipments.
e) To maintain to maintain the life and healthy well-being of our children we need to spend more than R$10,000.00 per month only for purchasing the formula.
f) Does anyone have any idea of how many cans of these special formulas are bought by the government of São Paulo and Rio de Janeiro for Public Hospitals and also to obey judicial orders?
g) How did we start to produce generic drugs in Brazil and how many lives have they saved?
h) How did we start producing cocktails for carriers of the HIV virus? By breaking patents and starting to produce generic drugs.
I suggest to all users of Pregomin, all the ones who need the formula to continue living - especially those who live in Brazil, a wonderful country of continental dimensions, where everything can be planted and produced - to unite and to seek for authorities willing to fight for the cause.
The Blog of Bahia Association of Parents and Friends of Children With Food Allergy published a newsletter sent by Danone explaining their reasons for the replacement (http://abapaa.blogspot.com/2010/09/substituicao-do-pregomim- per-pregomim.html) here translated:
"Dear Dr (a).,
Danone Baby Nutrition, always thinking in innovation and development of new products that meet the latest dietary recommendations adapted to the special needs of infants, reports the withdrawal of the product and its replacement by Pregomin Pepti. Such a substitution has been done in all countries where the product is marketed.
What are the reasons for replacing Pregomin by Pregomin Pepti?
• Pregomin Pepti meets the recommendations of recent national and international Medical Societies, which did not recommend the use of soy-based formulations due to the high content of phytoestrogens (isoflavones), aluminum and phytate, with possible deleterious effects on neuroendocrine development.
• Pregomin Pepti is the hydrolyzate formula more used worldwide, a product with a history of more than 25 years in the world market and with scientific documentation of its efficacy and safety.
• Because it is produced on a large scale, Pregomin Pepti has lower cost and allows us to sell it as a more affordable product.
• Pregomin Pepti contains MCTs, ARA, DHA and nucleotides, important nutrients for optimal digestion and absorption of fats, best visual and neuromotor development, as well as increased production of immunologically active cells, higher levels of antibodies, a lower incidence of diarrhea and increase in iron absorption.
• By virtue of its greater density, Pregomin Pepti has better performance in relation to the other hydrolysates Pregomin and the market.
• Pregomin Pepti has better flavor, and acceptance, proven in studies to facilitate acceptance to treatment. The reasons for its better taste are the presence of 100% maltodxtrina as a source of carbohydrates, the presence of extensively hydrolyzed protein 100% whey as protein source, as well as advanced production technology.
In order to assure a transition period of patients who are currently using Pregomim, the product will remain available for sale at the Taste of Living program, by calling 0800 727 8027, until the end of August 2010.
We also ensure that there wont be any problems to supply to states and municipalities where there are contracts for Pregomim in its old formulation.
Sincerely,
Claudio J. Sturion
Luis Marcellus Smith "
From now on, I would like to propose some reflections on such information:
1) Pregomin Pepti is equivalent to Nestle's Alfaré and MeadJohnson´s Pregestimil. They are hydrolyzed formulas made from cow´s milk whey. So it does not attend to the same public that is in need of the Pregomin hydrolyzed made from soy and is unable to use the hydrolyzed cow´s milk whey.
2) All the criticisms made about the use of soy, especially by American and European authorities are
well known (high content of phytoestrogens (isoflavones), aluminum and phytate, with possible deleterious effects on neuroendocrine development) - and it still does not justify the withdrawal of only a certain product which uses the hydrolyzed soy (highly fragmented) when there are so many other soy products, including NAN SOY, ADES juice and lots of others food made from soy ... non fragmented soy and that are even known for causing cross-reaction in all children who have an intolerance to cow's milk and beef products in general!
3) Most children dependent on Pregomin (hydrolyzed soy) will be forced to "migrate" to the Neocate, involuting from a semi-elemental formula to an elementary formula, fully hydrolyzed formula. It is known that prolonged use of Neocate (a highly hydrolyzed formula) causes atrophy of the digestive tract. For children that already have progressed from Neocate to Pregomin previously, IT IS A MAJOR AND VERY NEGATIVE HEALTH SETBACK, but, for Danone, it probably means the largest gain since the Neocate is much more expensive and the profit of the company is surely greater.
4) What is the real reason to withdraw a product (Pregomin soy-based) that has no similar product on the market and replace it with a product (Pregomin Pepti -based on cow´s milk whey) that has two other similar competitors like Alfaré of the Nestle and the Nestle's Alfaré and MeadJohnson´s Pregestimil?
5) Considering the well known damages caused by soy... surely everyone that depend on the soy to survive prefer to face the risk of its use than to face death by malnutrition. Therefor, I suggest the use of mandatory consumer information such as those used in cigarettes and in bottles and pacifiers, "Warning: Smoking is harmful to health" and "Warning: The use of bottle, nipple or pacifier affect breastfeeding. "
FINALLY, I would like to remind everyone that if Pregomin formula made of soy is no longer
used by Support/Danone company and so many depend on it, nothing prevents us to
break the patent and produce the a generic formula in Brasil considering:
a) Brazil produces and exports soybeans;
b) Brazil is one of the major importers of hypoallergenic food in the world.
c) We import Pregomin and Neocate, we pay R$ 200.00 to R$ 500.00 per can.
d) We are always stocking up with the fear of a strike in Customs and delaying shipments.
e) To maintain to maintain the life and healthy well-being of our children we need to spend more than R$10,000.00 per month only for purchasing the formula.
f) Does anyone have any idea of how many cans of these special formulas are bought by the government of São Paulo and Rio de Janeiro for Public Hospitals and also to obey judicial orders?
g) How did we start to produce generic drugs in Brazil and how many lives have they saved?
h) How did we start producing cocktails for carriers of the HIV virus? By breaking patents and starting to produce generic drugs.
I suggest to all users of Pregomin, all the ones who need the formula to continue living - especially those who live in Brazil, a wonderful country of continental dimensions, where everything can be planted and produced - to unite and to seek for authorities willing to fight for the cause.
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