Posted By Posting
Jan 08, 2002
hix
silent gerd, respiratory infections, tipping baby
My son now 15mnths was diagnosed with severe gerd and esophageal dysmotility at 3 weeks of age - he never threw up, nor did he lose weight, he did however suffer from apnea, bradycardia, blue spells,respiratory infections and bizarre seizures,head tipping and back arching. He had a fundo and g-tube placement at 6 weeks of age, this did stop the apnea and bradycardia but he still continued to suffer from lower respiratory infections (pneumonia's and brochilitos and brochitis),then decided at 4 mnths of age that he needed a dialation of the pyloric value due to delayed gastric emptying, this stopped the infections for a while but they returned, he was slated for another dialation due to delayed gastric emptying but chicken pox stopped that - i'm not sure that we will have this done, does anyone have experience with delayed gastric emptying causes respiratory infections and having to have it opened up more than once. How will i know when it is gone - the ped gi said it is a disease does this mean he will have it forever, what kind of effect on the stomach will having the fundo at such a young age have latter on?? Sorry new here and have so many questions, it is easy to relate to alot of the topics such as respiratory, tipping and silent gerd. Thanks.... HIX
Jan 10, 2002
Susan Gunther
Message for Hix silent gerd
Hi there. I'm Susan Gunther. My son Andrew has silent reflux and his problem is getting worst instead of better as the days go by. He's 2 1/2 years old and he is the picture of health by just looking at him. He has not had apnea or respiratory problems at all. He did have a seizure at 4 months of age due to the combination of strong meds at a early age, and then pseudo-seizures from reflux. Can you describe the bizarre seizures? They might have been pseudo-seizures from the pain of reflux. I do know that many refluxers have respiratory problems. This is a classic symptom of reflux. You ask if your son will have reflux forever? The answer is unknown. I've been told by Andrew's PED GI dr that reflux will go away for many babies by the age of one. If it doesn't, then it goes away sometimes during childhood. If it still doesn't then it goes into adulthood. A small percentage of children have to live with it thru childhood. Many do outgrow it. Very small amount of children live with it forever. As you know many adults develop GERD in adulthood who had no problems as a child. GER and GERD have many symptoms associated with it. You didn't mention Meds? What is he taking currently? How will you know when its gone you ask? Probably when he has been stable on his meds for a long time, and the dr. weans him off of them. If no problems then he's outgrown the reflux. I don't know much about the fundo at all since Andrew hasn't had to have any G-Tubes or Fundos. I am sure there are a few moms out there who can better answer more of your questions. Email me if you need a one-on-one at mgharway@aol.com. Thanks, Susan Gunther-mom to Andrew 2 1/2 years old silent refluxer.
Jan 11, 2002
Hix
Response to Susan
Thanks Susan, it is nice to know that someone is in the same situation. My son also looks great and grows fine 24lbs at 16 mnths. It seems that quite often the dr's dismiss his condition "cause he looks so great" - but they are not the ones up and down all night, watching helplessly while your child chokes, gags, and have nothing come out by mouth. They are not the ones that have to listen to my child have trouble getting his breath or wheezing so bad I can hear across the room. I shouldn't knock them all I have had tremondus luck with the ped GI, ped surgeon, ped neurologist, ped respirtologist, feeding specialist and peditrician its the doctors that don't know that frustrate me so. You see i live far away from the specialist and need to travel for treatment and to see them, in between visit i visit the local health center with GP only. You asked about meds i have decided recently not to follow the ped doctor request for zantac - it does not seem to help my son and why did they do the surgery - they told they had exhausted all medical solutions (meaning medicine) and that he was at his max for all the prescriptions and they needed to perform a fundo and gtube placement??? I shoudn't complain he is 10....20.... maybe even 40 percent better off then 1 year ago - but yet i can see him reflux and reswallow - they told that the main problem was that his esophagus is totally uncordinated and that is what is causing the respiratory problems and that what he was refluxing was stuff he swallowed before reaching his stomach - the esophagus was going haywire and sending the food all over the place even sometimes into the lungs then another specialist told me that it was delayed gastric emptying and the stuff was forcing its way through the fundo into the esophagus and sometimes into the lungs??? Both said they saw this on the last barium swallow....You know what I think they don't know exaclty what is causing the respiratory stuff so i have decided to forego the medicine and the surgery they want to do and keep a log of all funny stuff. As for the seizure the ped said it was because his reflux was so bad that he was drowing himself (refluxing liquid into the esophagus) and it was from lack of oxygen .. i think it was called hypoxic seizure?? So now i just sit and wait for all the specilist to consult and decide what exactly they are going to do and it will have to be explained throughly to me prior to making a decision for his 4th surgery. PS. I had the gtube removed in March of 2001 and do not regret it, my son eats fine its once it gets into the esophagus or stomach is when he starts to have problems. Thanks for listening i know i tend to ramble.
Jan 13, 2002
Beth Anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
No meds after surgery isn't a rule
Hix, I just wanted you to to know that a new study of adults showed that a great number of them still needed some medication after fundo surgery. They were mostly happy with the surgery but it wasn't a miracle cure for most of them. Beth
Jan 11, 2002
Hix
Response to Susan
Thanks Susan, it is nice to know that someone is in the same situation. My son also looks great and grows fine 24lbs at 16 mnths. It seems that quite often the dr's dismiss his condition "cause he looks so great" - but they are not the ones up and down all night, watching helplessly while your child chokes, gags, and have nothing come out by mouth. They are not the ones that have to listen to my child have trouble getting his breath or wheezing so bad I can hear across the room. I shouldn't knock them all I have had tremondus luck with the ped GI, ped surgeon, ped neurologist, ped respirtologist, feeding specialist and peditrician its the doctors that don't know that frustrate me so. You see i live far away from the specialist and need to travel for treatment and to see them, in between visit i visit the local health center with GP only. You asked about meds i have decided recently not to follow the ped doctor request for zantac - it does not seem to help my son and why did they do the surgery - they told they had exhausted all medical solutions (meaning medicine) and that he was at his max for all the prescriptions and they needed to perform a fundo and gtube placement??? I shoudn't complain he is 10....20.... maybe even 40 percent better off then 1 year ago - but yet i can see him reflux and reswallow - they told that the main problem was that his esophagus is totally uncordinated and that is what is causing the respiratory problems and that what he was refluxing was stuff he swallowed before reaching his stomach - the esophagus was going haywire and sending the food all over the place even sometimes into the lungs then another specialist told me that it was delayed gastric emptying and the stuff was forcing its way through the fundo into the esophagus and sometimes into the lungs??? Both said they saw this on the last barium swallow....You know what I think they don't know exaclty what is causing the respiratory stuff so i have decided to forego the medicine and the surgery they want to do and keep a log of all funny stuff. As for the seizure the ped said it was because his reflux was so bad that he was drowing himself (refluxing liquid into the esophagus) and it was from lack of oxygen .. i think it was called hypoxic seizure?? So now i just sit and wait for all the specilist to consult and decide what exactly they are going to do and it will have to be explained throughly to me prior to making a decision for his 4th surgery. PS. I had the gtube removed in March of 2001 and do not regret it, my son eats fine its once it gets into the esophagus or stomach is when he starts to have problems. Thanks for listening i know i tend to ramble.
Jan 13, 2002
Susan Gunther
Message for Hix
Hello again, its Susan. You should NEVER feel you are alone in this battle against reflux. Believe you me, there is a network of Moms and Dads who are going thru just what you and I are going thru. No matter if its Advanced GER or Mild GER, the worry and helplessness is still there. Fortunately, the PED doesn't dismiss Andrew's GER. They sometimes think he's manipulating me into thinking he has it for attention, but as soon as I mention the runny nose part, they all stop doubting me. In fact, both his PED and GI are currently very worried about Andrew's reflux. He's scheduled for another endoscopy in two weeks so we will find out just how much reflux is really affecting him. (With the way Andrew comes out of tests successfully, I am positive it'll show nothing). I do agree that the Dr's don't go home with our children, so they don't know exactly what its like. One thing I definitely agree with is that the Dr's don't know exactly what they are doing. Since Andrew also looks like the picture of health, they winged it especially in the beginning. Even now, they see him playing and running around. When I describe the pain, crying, and irritability he has especially at nitetime, they find it hard to believe. They ran every conceivable test on Andrew because they were winging it. Not sure if its one thing or another. Turned out to be reflux. It seems that reflux is a fairly new disease. Years ago, they called reflux "colic". It now has a fancy name.. I do think your best solution is to wait and see what the specialists decide on before getting involved. You are not rambling about your child's health, condition, or anything that is going on. Reflux is a very hard problem to deal with. Not being able to help your child is extremely frustrating. I know when Andrew has his reflux, there is usually nothing I can do for him until it passes. Its scary to think I may have "failed" him in some way. Especially since parents seem to think we can shield our children from any harm. This is one time we can't "shield" them unfortunately. Best of luck and I'm here if you need me - Susan Gunther.
Check with your
doctor first!