Jeanne
05-21-2004, 11:39 AM
I am so glad I found this site. It has been a tremendous help just hearing other stories like ours. I hope to be posting soon in the success portion of this web site and hope the same for all of you. I hope this introduction is not to lengthy but to me it all seems important to share.
I was born, raised, married, had children, raised them and became a grandmother all in Oklahoma. I retired and moved (begrudgingly) to Texas with my husband three years ago. I return home often to spend time with my kids and grandchildren. Dylan is the newest member of our family born 2/7/04. I was there for his birth. He came into this world in a big hurry. One hour and twenty minutes of labor and three weeks early!
From the start Dylan has been an extremely difficult and fussy baby especially during and after feedings. From the very first feeding in the hospital he has seemed to suck with much difficulty screaming and arching apparently in pain the second the bottle is removed from his mouth for burping. I stayed until he was nine days old. By the time I went back at the end of March they had changed his formula for the third time in the short six weeks he had been here due to the crying fits and vomiting which kept being referred to as "spitting up" by the pediatricians. His mom and dad were exhausted. While I was there he was crying after he ate one evening and I was rocking him. The gas in his tummy was so loud I thought it was my stomach at first. (I have GERD, Barrett's Esophagus, Gastrointestinal motility disorders and Gastoparesis. Nothing compares to the pain I have suffered with GERD. I have had the Nissen Fundoplication surgery done twice. The first in 1995, due to many different gastrointestinal problems it didn't help much and came undone due to vomiting from the heartburn. The second surgery was done again in 2000. I still take Prevacid daily but have found much relief since the second surgery). I laid my hand on his stomach and the gas was so strong it felt as though I was touching the belly of a pregnant momma and the baby was kicking. I told the kids he needed to go back to the doctor because something was defiantly not right and to me he acted just like I always feel with the stomach and esophagus problems that I have. I had not ever heard of infant reflux and had no clue how close to right I actually was. I just knew something was terribly wrong with him. I encouraged Anna (my daughter) to make the doctor understand that he doesn't seem to be able to suck, swallow, and breath simultaneously like he should and then after he eats he vomits, not burps up, it is vomit! You can just tell he is in pain, not spoiled. He will sleep for a little while and then cry but seems to calm down when he is being held. But I'm just talking about he settles down and to the point where he cries instead of screams! Due to insurance issues she had not been able to see her pediatrician that was her daughters Doctor. She told me she new something was wrong but the other Doctor's she was currently forced to use kept acting like she was just stupid and repeatedly told her he was not vomiting. One of them actually told her, "I know spitting up is inconvenient when you’re a new mom but some babies just tend to do this". Anna told her that it wasn't the inconvenience she was concerned about it was the pain he was in! That Doctor would just not acknowledge his symptoms were real. She finally got authorization (HMO's don't you just love em!) to take him to her daughters Doctor and sure enough, he has the exact same problem that I do. The muscle at the end of his esophagus is not developed and he is suffering from sever heartburn to the point of throwing up! He has pediatric GERD disease and the reason he cries when he lays down is because heartburn is always worse, when laying down. They put him on prescription Zantac, changed formula again, elevated his bed, and never put him down for at least an hour after he eats but nothing seems to help. The vomiting continues to be worse. He was seen every three days and weighed for two weeks. He is gaining less than half the weight he should and none of his symptoms have improved. I went back the first week of May. By then he also seemed to be having constipation problems. The Doctor suggested giving him pear juice to help relive this. I suggested we give him a couple of ounces before his formula was offered at his next feeding, which we did. After him taking about an ounce I was burping him and he threw up nothing but formula, instead of just pear juice he had just drank and, it shot out of his mouth about two feet (we measured!). He choked from the vomit so hard he lost his breath for a few seconds. He gasp several times before he could breath normal again and although he was not crying at this point tears from choking rolled down his cheeks. He was so shocked at what had just happened he just had a confused look on his face for what seemed like several minutes but probably wasn't, until he began to cry. Since it had been four hours since he had had formula we decided to call the Doctor. Formula should not of still been in his stomach. She called the first thing the next morning. Given this additional information he had her bring him in. Seeing no improvement the Doctor thought he may also have Pyloric Stenosis and he immediately scheduled an upper G. I. that day. I went with them to have this done. Seeing him so upset from not eating and then being strapped into that harness and his hands tied up to each side of his head while he screamed in fear and hunger pain was heart breaking. But, it did confirm the reflux diagnosis, which made the trauma seem worth the discomfort. Thankfully, he did not have Pyloric Stenosis but the reflux was so extreme that the Radiologist was shocked enough to say, "wow!" They gave him the barium to drink from a bottle and we watched it enter his esophagus and go to his stomach. When the nipple was removed from his mouth the reflux is so bad it shot back up all the way from his stomach back into his throat, enough so that he has to actually swallow it again. Thus explaining his screams the second you remove the bottle from his mouth from the first burping that continues sometimes to the next feeding and then it starts all over again. The Doctor had requested same day reports sent to him after the test and around 5:30 P.M. he called us and added Reglan to his meds. Two weeks on Zantac and Reglan has proved to be no help. In addition to all of his other symptoms the wheezing that usually comes with feeding but subsides within an hour or so is prominent most of the time now. Also, some days he won't eat for five to six hours at a time now. He went back to the Doctor yesterday May 20, 2004. He was screaming and wrenching in pain during most of the visit. Seeing this and hearing the constant wheezing the pediatrician told Anna this is out of his league and it was time to refer him to a Pediatric Gastroenterology Specialist. Longer periods between feedings are because he is associating pain with food and this must be addressed now. This man is so kind and concerned, he didn't even charge her for the visit because there is nothing more he can do but, at the same time assured Anna that there were other meds and treatment that can be done. He just recognizes he is not the one to be prescribing addition treatment at this point. She was given the name of a specialist to take him to and left not accomplishing much but feeling like we are at least moving forward. When she called to make the appointment she found out it would take two months to get him in! She called the Pediatrician back today and he is going to try to make the appointment for her by talking to the Specialist himself. We are currently waiting to hear back from him. Like the advise I have read from other moms on this site and others I have researched I encourage those just entering this "reflux roller coaster" of a life these children are on, be a persistent parent! There are Doctor's out there who are only good with general pediatric health and then there are ones who can make a difference in your baby's quality of life when things are not as they should be. Finding a Doctor who will listen can sometimes be quite a journey. I have seen first hand the frustration a mother must sometimes go through making a Doctor believe the symptoms are real and understand how you watch your baby suffer. It is very important to try to control the pain for every ones sake and to insure the heartburn damage doesn't wind up causing other complications such as, Barrett's Esophagus like I have from all the erosion heartburn causes. I suffered for years before I had surgery and coming from someone who knows this is excruciating pain. I feel so bad for Dylan and all the others like him to think that he is so little and has hurt the way I have, but this has been every day of his whole life so far. I know he just can't understand anything but pain and I wonder what this does to his mental development. I wish I could bring him home with me to take care of him. His mom and dad are both so wore out! Their patience with him is unbelievable. My patience with him is from truly knowing how bad it hurts. Dylan, his mom and dad and those of you with children like Dylan are forever in my prayers for patience.
I was born, raised, married, had children, raised them and became a grandmother all in Oklahoma. I retired and moved (begrudgingly) to Texas with my husband three years ago. I return home often to spend time with my kids and grandchildren. Dylan is the newest member of our family born 2/7/04. I was there for his birth. He came into this world in a big hurry. One hour and twenty minutes of labor and three weeks early!
From the start Dylan has been an extremely difficult and fussy baby especially during and after feedings. From the very first feeding in the hospital he has seemed to suck with much difficulty screaming and arching apparently in pain the second the bottle is removed from his mouth for burping. I stayed until he was nine days old. By the time I went back at the end of March they had changed his formula for the third time in the short six weeks he had been here due to the crying fits and vomiting which kept being referred to as "spitting up" by the pediatricians. His mom and dad were exhausted. While I was there he was crying after he ate one evening and I was rocking him. The gas in his tummy was so loud I thought it was my stomach at first. (I have GERD, Barrett's Esophagus, Gastrointestinal motility disorders and Gastoparesis. Nothing compares to the pain I have suffered with GERD. I have had the Nissen Fundoplication surgery done twice. The first in 1995, due to many different gastrointestinal problems it didn't help much and came undone due to vomiting from the heartburn. The second surgery was done again in 2000. I still take Prevacid daily but have found much relief since the second surgery). I laid my hand on his stomach and the gas was so strong it felt as though I was touching the belly of a pregnant momma and the baby was kicking. I told the kids he needed to go back to the doctor because something was defiantly not right and to me he acted just like I always feel with the stomach and esophagus problems that I have. I had not ever heard of infant reflux and had no clue how close to right I actually was. I just knew something was terribly wrong with him. I encouraged Anna (my daughter) to make the doctor understand that he doesn't seem to be able to suck, swallow, and breath simultaneously like he should and then after he eats he vomits, not burps up, it is vomit! You can just tell he is in pain, not spoiled. He will sleep for a little while and then cry but seems to calm down when he is being held. But I'm just talking about he settles down and to the point where he cries instead of screams! Due to insurance issues she had not been able to see her pediatrician that was her daughters Doctor. She told me she new something was wrong but the other Doctor's she was currently forced to use kept acting like she was just stupid and repeatedly told her he was not vomiting. One of them actually told her, "I know spitting up is inconvenient when you’re a new mom but some babies just tend to do this". Anna told her that it wasn't the inconvenience she was concerned about it was the pain he was in! That Doctor would just not acknowledge his symptoms were real. She finally got authorization (HMO's don't you just love em!) to take him to her daughters Doctor and sure enough, he has the exact same problem that I do. The muscle at the end of his esophagus is not developed and he is suffering from sever heartburn to the point of throwing up! He has pediatric GERD disease and the reason he cries when he lays down is because heartburn is always worse, when laying down. They put him on prescription Zantac, changed formula again, elevated his bed, and never put him down for at least an hour after he eats but nothing seems to help. The vomiting continues to be worse. He was seen every three days and weighed for two weeks. He is gaining less than half the weight he should and none of his symptoms have improved. I went back the first week of May. By then he also seemed to be having constipation problems. The Doctor suggested giving him pear juice to help relive this. I suggested we give him a couple of ounces before his formula was offered at his next feeding, which we did. After him taking about an ounce I was burping him and he threw up nothing but formula, instead of just pear juice he had just drank and, it shot out of his mouth about two feet (we measured!). He choked from the vomit so hard he lost his breath for a few seconds. He gasp several times before he could breath normal again and although he was not crying at this point tears from choking rolled down his cheeks. He was so shocked at what had just happened he just had a confused look on his face for what seemed like several minutes but probably wasn't, until he began to cry. Since it had been four hours since he had had formula we decided to call the Doctor. Formula should not of still been in his stomach. She called the first thing the next morning. Given this additional information he had her bring him in. Seeing no improvement the Doctor thought he may also have Pyloric Stenosis and he immediately scheduled an upper G. I. that day. I went with them to have this done. Seeing him so upset from not eating and then being strapped into that harness and his hands tied up to each side of his head while he screamed in fear and hunger pain was heart breaking. But, it did confirm the reflux diagnosis, which made the trauma seem worth the discomfort. Thankfully, he did not have Pyloric Stenosis but the reflux was so extreme that the Radiologist was shocked enough to say, "wow!" They gave him the barium to drink from a bottle and we watched it enter his esophagus and go to his stomach. When the nipple was removed from his mouth the reflux is so bad it shot back up all the way from his stomach back into his throat, enough so that he has to actually swallow it again. Thus explaining his screams the second you remove the bottle from his mouth from the first burping that continues sometimes to the next feeding and then it starts all over again. The Doctor had requested same day reports sent to him after the test and around 5:30 P.M. he called us and added Reglan to his meds. Two weeks on Zantac and Reglan has proved to be no help. In addition to all of his other symptoms the wheezing that usually comes with feeding but subsides within an hour or so is prominent most of the time now. Also, some days he won't eat for five to six hours at a time now. He went back to the Doctor yesterday May 20, 2004. He was screaming and wrenching in pain during most of the visit. Seeing this and hearing the constant wheezing the pediatrician told Anna this is out of his league and it was time to refer him to a Pediatric Gastroenterology Specialist. Longer periods between feedings are because he is associating pain with food and this must be addressed now. This man is so kind and concerned, he didn't even charge her for the visit because there is nothing more he can do but, at the same time assured Anna that there were other meds and treatment that can be done. He just recognizes he is not the one to be prescribing addition treatment at this point. She was given the name of a specialist to take him to and left not accomplishing much but feeling like we are at least moving forward. When she called to make the appointment she found out it would take two months to get him in! She called the Pediatrician back today and he is going to try to make the appointment for her by talking to the Specialist himself. We are currently waiting to hear back from him. Like the advise I have read from other moms on this site and others I have researched I encourage those just entering this "reflux roller coaster" of a life these children are on, be a persistent parent! There are Doctor's out there who are only good with general pediatric health and then there are ones who can make a difference in your baby's quality of life when things are not as they should be. Finding a Doctor who will listen can sometimes be quite a journey. I have seen first hand the frustration a mother must sometimes go through making a Doctor believe the symptoms are real and understand how you watch your baby suffer. It is very important to try to control the pain for every ones sake and to insure the heartburn damage doesn't wind up causing other complications such as, Barrett's Esophagus like I have from all the erosion heartburn causes. I suffered for years before I had surgery and coming from someone who knows this is excruciating pain. I feel so bad for Dylan and all the others like him to think that he is so little and has hurt the way I have, but this has been every day of his whole life so far. I know he just can't understand anything but pain and I wonder what this does to his mental development. I wish I could bring him home with me to take care of him. His mom and dad are both so wore out! Their patience with him is unbelievable. My patience with him is from truly knowing how bad it hurts. Dylan, his mom and dad and those of you with children like Dylan are forever in my prayers for patience.