Hi all, im a new member and im at my wits end, hoping someone can give me some advice.
From the age of 2 days old my baby boy Ben was bringing up pretty much all the milk he had drank. I was told by my midwife and HV that he was just a sicky baby and not to worry, his abdomen was bloated and he would wriggle around in pain, he cried almost all the time, he had a permanent frown and would sometimes start screaming for no apparent reason, he wouldnt sleep for longer than 2 hours in one go and even then his sllep was not rested due to the squirming and grimacing.
After numerous trips to the doctors and a few overnight stays in hospital we were told that he was too young to be diagnosed with Pyloric Stenosis and that he probably "just" had reflux, we were given infant Gaviscon and told to come back when Ben was 6 weeks old if he was no better and they may be able to diagnose PS then. I was breastfeeding at the time but by 4 weeks old i had to change him to formula as we were both so tired and it was difficult giving the Gaviscon while breastfeeding.
We struggled for 5 weeks with all the symptoms, which seemed to be made worse by the Gaviscon, it only helped the vomiting slightly as it thickens the stomach contents which is harder to vomit back up (Ben still managed to vomit as often just not as much in quantity). Watching our baby in this much distress and not being able to do anything to help was heartbreaking!
We took him back to A&E when he was just over 6 weeks old during a particullarly bad night and were admitted for observation (again!), the following morning i begged a doctor to do something to help my little boy and not just put it down to reflux and send us home on more Gaviscon, i was fed up with my baby boy suffering. We were sent for an ultrasound scan to determine if it was PS but they were unable to see anything due to the amount of air in his stomach, we were told to feed him as much as possible and make sure he kept it down (yeah right!) then they would repeat the scan, anyway the second scan was the same as the first, stomach too full of air to see anything so they sent him for a Barium swallow xrays, which was a nightmare in itself as he kept vomiting back up the Barium, they eventually managed to take some pictures, we were told to go back to the ward and wait for the results. 2 hours later a doctor came in to tell us that he didnt have PS and it was "just" reflux and to go home and continue with the Gaviscon and he would grow out of it by 12 months ( he was only 6 weeks old at his point) I was devastated that Ben would suffer for another 11 months. As we were packing everything up to go home the same doctor came in and said he had reviewed the xrays and saw an abnormality with his stomach and that we had to go straight to a larger hospital near by and see the specialist there, we wernt even allowed to go home first to collect his milk.
When we got there we were told that he had a twisted stomach which if they didnt operate on could possibly kill him if it didnt untwist again, the surgeon said he would do a Gastropexy and also said he would do a laprascopic fundoplication at the same time to help with the vomiting. He had a NG tube put in to release the air from his stomach and surgery was booked the following morning.
We were so worried and hadnt heard of any of these problems or operations before, all we wanted was our baby boy to be happy, for his frown to go and hoping to see his first smile. The surgeon said dont worry after the operation he would be fine.
After the operation we found out by chance that he would never be able to vomit or burp again (which worried me, would he cope drinking fizzy drinks or beer when he was older, what happens if he gets food poisoning or a stomach bug!) We wernt told any of this before the surgery. After 4 days we took him home.
To cut a long story short (well as short as possible) 10 weeks later, he hasnt vomited since the op but.... he has constant constipation which he takes Lactulose for, he doesnt eat as much as he should, he struggles to drink his bottles, he has terrible flatulance, awful bloating, he still squirms around in pain, strains to pass wind, cries a lot, drools huge amounts, only sleeps a few hours at a time, again unrested and he just doesnt seem happy....i feel like if he could just do a decent burp then he would feel a lot better.
If i had of known how he would be after the op i dont think we would of gone ahead with the Fundoplication, it seems to have caused even more problems and he may have even grown out of the reflux by now anyway.
Every time i look at him i feel guilty and helpless
If anyone could please give me any help or advice i would be extremley grateful.
Sorry for ranting on but its been 4 months of bottled up frustration with no end in sight....
From the age of 2 days old my baby boy Ben was bringing up pretty much all the milk he had drank. I was told by my midwife and HV that he was just a sicky baby and not to worry, his abdomen was bloated and he would wriggle around in pain, he cried almost all the time, he had a permanent frown and would sometimes start screaming for no apparent reason, he wouldnt sleep for longer than 2 hours in one go and even then his sllep was not rested due to the squirming and grimacing.
After numerous trips to the doctors and a few overnight stays in hospital we were told that he was too young to be diagnosed with Pyloric Stenosis and that he probably "just" had reflux, we were given infant Gaviscon and told to come back when Ben was 6 weeks old if he was no better and they may be able to diagnose PS then. I was breastfeeding at the time but by 4 weeks old i had to change him to formula as we were both so tired and it was difficult giving the Gaviscon while breastfeeding.
We struggled for 5 weeks with all the symptoms, which seemed to be made worse by the Gaviscon, it only helped the vomiting slightly as it thickens the stomach contents which is harder to vomit back up (Ben still managed to vomit as often just not as much in quantity). Watching our baby in this much distress and not being able to do anything to help was heartbreaking!
We took him back to A&E when he was just over 6 weeks old during a particullarly bad night and were admitted for observation (again!), the following morning i begged a doctor to do something to help my little boy and not just put it down to reflux and send us home on more Gaviscon, i was fed up with my baby boy suffering. We were sent for an ultrasound scan to determine if it was PS but they were unable to see anything due to the amount of air in his stomach, we were told to feed him as much as possible and make sure he kept it down (yeah right!) then they would repeat the scan, anyway the second scan was the same as the first, stomach too full of air to see anything so they sent him for a Barium swallow xrays, which was a nightmare in itself as he kept vomiting back up the Barium, they eventually managed to take some pictures, we were told to go back to the ward and wait for the results. 2 hours later a doctor came in to tell us that he didnt have PS and it was "just" reflux and to go home and continue with the Gaviscon and he would grow out of it by 12 months ( he was only 6 weeks old at his point) I was devastated that Ben would suffer for another 11 months. As we were packing everything up to go home the same doctor came in and said he had reviewed the xrays and saw an abnormality with his stomach and that we had to go straight to a larger hospital near by and see the specialist there, we wernt even allowed to go home first to collect his milk.
When we got there we were told that he had a twisted stomach which if they didnt operate on could possibly kill him if it didnt untwist again, the surgeon said he would do a Gastropexy and also said he would do a laprascopic fundoplication at the same time to help with the vomiting. He had a NG tube put in to release the air from his stomach and surgery was booked the following morning.
We were so worried and hadnt heard of any of these problems or operations before, all we wanted was our baby boy to be happy, for his frown to go and hoping to see his first smile. The surgeon said dont worry after the operation he would be fine.
After the operation we found out by chance that he would never be able to vomit or burp again (which worried me, would he cope drinking fizzy drinks or beer when he was older, what happens if he gets food poisoning or a stomach bug!) We wernt told any of this before the surgery. After 4 days we took him home.
To cut a long story short (well as short as possible) 10 weeks later, he hasnt vomited since the op but.... he has constant constipation which he takes Lactulose for, he doesnt eat as much as he should, he struggles to drink his bottles, he has terrible flatulance, awful bloating, he still squirms around in pain, strains to pass wind, cries a lot, drools huge amounts, only sleeps a few hours at a time, again unrested and he just doesnt seem happy....i feel like if he could just do a decent burp then he would feel a lot better.
If i had of known how he would be after the op i dont think we would of gone ahead with the Fundoplication, it seems to have caused even more problems and he may have even grown out of the reflux by now anyway.
Every time i look at him i feel guilty and helpless

If anyone could please give me any help or advice i would be extremley grateful.
Sorry for ranting on but its been 4 months of bottled up frustration with no end in sight....
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