My Brooke
09-15-2003, 10:46 PM
To every parent, Grandparents etc.. I have been doing intense research for Acid Reflex babies and i came across this website. (Please feel free to take a look at it.)http://www.reflux.org/
I wanted to print some of which is actual testimony:
Impact on children and families
Most babies with GERD suffer considerable pain and cry inconsolably most of their waking hours. Actually, new studies show many babies with “colic” really have GERD. With GERD, the inconsolable crying can last for months or even years – much longer than colic. Children with GERD don’t enjoy eating and some even cry and pull away during feeding. Older children may limit their intake to very bland foods or white foods and not eat enough to grow. Some parents resort to slipping a bottle into their baby’s mouth while the child is asleep. A few children even have to be tube fed because of severe food refusal or because they throw up so much of what they eat that it is compromising their health.
Crying, refusing food and vomiting are well documented as the top three triggers of unintentional child abuse or Shaken Baby Syndrome. PAGER works with child abuse prevention programs helping parents to calm difficult babies and reducing the likelihood of abuse. PAGER refers to caring for a child with GERD as “24-hour intensive care parenting,” with parents often stressed to the breaking point. Many of our members have been diagnosed with clinical depression, and some have even been diagnosed with sleep deprivation psychosis. Most of our members say that caring for a child with GERD is the most difficult thing they have ever dealt with, and many decide not to have additional children for fear of having another child with GERD.
GERD has a particularly distressing effect on the lives of children with special needs. Their GERD often has more impact on their quality of life than their primary diagnosis because it causes poor nutrition, sleep deprivation and pain. One of our teen members with autism was not able to tell his parents how awful he felt every day of his life. When his dentist noticed that his teeth were eroding away, he was put on GERD medication. His mother was shocked when several of his problem behaviors vanished. He no long refused food. He stopped gagging, retching and spitting up. No more drooling or moaning. He stopped waking up at night. He became less combative, and he stopped biting. His breath even smelled better, and his personality was more pleasant. His ability to learn and cope with the world improved dramatically. He still has autism, but his life is much closer to normal.
The burden on the families of children with GERD has never been officially studied. It is not unusual for our babies to visit the pediatrician weekly, and older kids may see as many as four specialists (gastroenterology, pulmonology, ENT, allergy, nutrition, occupational therapy, speech therapy, etc) and require repeated testing. One of the PAGER children averages 50 doctor visits and 75 medication refills per year. Many of our families experience financial hardship due to expenses beyond what is covered by medical insurance. One child has had five fundoplication operations in an attempt to alleviate his symptoms. Luckily, most children never require hospitalization or surgery. Babies and toddlers with GERD require an extraordinary level of care and with few exceptions their mothers are forced to quit work. Our teens have been known to miss as much as one day of school per week due to pain and nausea, and many are home-schooled for this reason. The full range of costs associated with pediatric GERD have not been studied, nor have the costs associated with lack of treatment.
Awareness
Every parent and every person who works with children needs to know about GERD just as urgently as they need to know about vaccinations and preventing Sudden Infant Death Syndrome. In order for children to receive a proper diagnosis, parents need to know that they should keep looking for answers if their child has stomach aches, is a picky eater, wakes frequently at night, coughs a lot or spits up frequently. Many children experience intermittent periods of time with symptoms, so doctors rely on parents to tell them when the problem is more than temporary or more than a nuisance for the child.
Possible signs and symptoms in children include:
· Pain - irritability, constant or sudden crying, "colic," back arching, abdominal pain above the belly button, chest pain, heartburn or burning sensation in the esophagus. (Rare - pain migrating to the shoulder/shoulder blade)
· Vomiting - frequent spitting-up or vomiting, frequent wet burps/ wet hiccups/food coming part way up more than an hour after eating, spitting-up after six months of age. (Rare - nausea, projectile vomiting)
· Eating - extreme pickiness about foods or textures, food intolerances, refusing food, eating only a few bites despite hunger, eating only when sleepy, gagging, choking, poor weight gain, weight loss. (Rare - excessive weight gain from constant drinking.)
· Respiratory - bad breath, constantly runny nose, frequent sore throat, upper respiratory infections, sinus infections, bronchitis, croup, wheezing, asthma, nighttime cough, nagging dry cough, throat clearing, noisy or labored breathing/stridor, hoarse or deep voice, vocal cord nodules. (Rare - pneumonia, aspiration, apnea, Apparent-Life-Threatening-Events, laryngospasm)
· Miscellaneous - poor sleep habits/ frequent waking, esophagitis, frequent ear infections or congestion, excessive salivation/drooling, pain-based aggression or clinging, needing to be held upright, intolerant of pressure on the stomach. (Rare - vagus nerve seizures, esophageal ulcers, strictures, tooth enamel erosion, peculiar neck arching/ Sandifur's Syndrome, Barrett’s Esophagus)
Pleasssssssssse go to this website and read the information.. I strongly urge everyone to visit http://www.congress.org to find information about where you can write your US Senators and US Congressman based on your zip code.
write and tell your experience to help them understand that we need answers and that our babies children are suffering and we want and demand help for them and more research done.
Just wanted to share this ...let me know what you all think..
__________________
Angela :mad:
I wanted to print some of which is actual testimony:
Impact on children and families
Most babies with GERD suffer considerable pain and cry inconsolably most of their waking hours. Actually, new studies show many babies with “colic” really have GERD. With GERD, the inconsolable crying can last for months or even years – much longer than colic. Children with GERD don’t enjoy eating and some even cry and pull away during feeding. Older children may limit their intake to very bland foods or white foods and not eat enough to grow. Some parents resort to slipping a bottle into their baby’s mouth while the child is asleep. A few children even have to be tube fed because of severe food refusal or because they throw up so much of what they eat that it is compromising their health.
Crying, refusing food and vomiting are well documented as the top three triggers of unintentional child abuse or Shaken Baby Syndrome. PAGER works with child abuse prevention programs helping parents to calm difficult babies and reducing the likelihood of abuse. PAGER refers to caring for a child with GERD as “24-hour intensive care parenting,” with parents often stressed to the breaking point. Many of our members have been diagnosed with clinical depression, and some have even been diagnosed with sleep deprivation psychosis. Most of our members say that caring for a child with GERD is the most difficult thing they have ever dealt with, and many decide not to have additional children for fear of having another child with GERD.
GERD has a particularly distressing effect on the lives of children with special needs. Their GERD often has more impact on their quality of life than their primary diagnosis because it causes poor nutrition, sleep deprivation and pain. One of our teen members with autism was not able to tell his parents how awful he felt every day of his life. When his dentist noticed that his teeth were eroding away, he was put on GERD medication. His mother was shocked when several of his problem behaviors vanished. He no long refused food. He stopped gagging, retching and spitting up. No more drooling or moaning. He stopped waking up at night. He became less combative, and he stopped biting. His breath even smelled better, and his personality was more pleasant. His ability to learn and cope with the world improved dramatically. He still has autism, but his life is much closer to normal.
The burden on the families of children with GERD has never been officially studied. It is not unusual for our babies to visit the pediatrician weekly, and older kids may see as many as four specialists (gastroenterology, pulmonology, ENT, allergy, nutrition, occupational therapy, speech therapy, etc) and require repeated testing. One of the PAGER children averages 50 doctor visits and 75 medication refills per year. Many of our families experience financial hardship due to expenses beyond what is covered by medical insurance. One child has had five fundoplication operations in an attempt to alleviate his symptoms. Luckily, most children never require hospitalization or surgery. Babies and toddlers with GERD require an extraordinary level of care and with few exceptions their mothers are forced to quit work. Our teens have been known to miss as much as one day of school per week due to pain and nausea, and many are home-schooled for this reason. The full range of costs associated with pediatric GERD have not been studied, nor have the costs associated with lack of treatment.
Awareness
Every parent and every person who works with children needs to know about GERD just as urgently as they need to know about vaccinations and preventing Sudden Infant Death Syndrome. In order for children to receive a proper diagnosis, parents need to know that they should keep looking for answers if their child has stomach aches, is a picky eater, wakes frequently at night, coughs a lot or spits up frequently. Many children experience intermittent periods of time with symptoms, so doctors rely on parents to tell them when the problem is more than temporary or more than a nuisance for the child.
Possible signs and symptoms in children include:
· Pain - irritability, constant or sudden crying, "colic," back arching, abdominal pain above the belly button, chest pain, heartburn or burning sensation in the esophagus. (Rare - pain migrating to the shoulder/shoulder blade)
· Vomiting - frequent spitting-up or vomiting, frequent wet burps/ wet hiccups/food coming part way up more than an hour after eating, spitting-up after six months of age. (Rare - nausea, projectile vomiting)
· Eating - extreme pickiness about foods or textures, food intolerances, refusing food, eating only a few bites despite hunger, eating only when sleepy, gagging, choking, poor weight gain, weight loss. (Rare - excessive weight gain from constant drinking.)
· Respiratory - bad breath, constantly runny nose, frequent sore throat, upper respiratory infections, sinus infections, bronchitis, croup, wheezing, asthma, nighttime cough, nagging dry cough, throat clearing, noisy or labored breathing/stridor, hoarse or deep voice, vocal cord nodules. (Rare - pneumonia, aspiration, apnea, Apparent-Life-Threatening-Events, laryngospasm)
· Miscellaneous - poor sleep habits/ frequent waking, esophagitis, frequent ear infections or congestion, excessive salivation/drooling, pain-based aggression or clinging, needing to be held upright, intolerant of pressure on the stomach. (Rare - vagus nerve seizures, esophageal ulcers, strictures, tooth enamel erosion, peculiar neck arching/ Sandifur's Syndrome, Barrett’s Esophagus)
Pleasssssssssse go to this website and read the information.. I strongly urge everyone to visit http://www.congress.org to find information about where you can write your US Senators and US Congressman based on your zip code.
write and tell your experience to help them understand that we need answers and that our babies children are suffering and we want and demand help for them and more research done.
Just wanted to share this ...let me know what you all think..
__________________
Angela :mad: