Gastro Oesophageal Reflux (GORD, GERD) Survey Results

Below you will find a detailed analysis of the results of the Gastro Oesophageal Reflux survey we posted on Parentsown.co.uk a few months back.

The survey is still open and can be found by clicking this link: The GORD Survey. We are leaving the survey open so that when we have another good number of additional entries we will re-analyse and post updated results.

If you want to read the Executive Summary of the GORD survey results then click here.

If you'd like to comment about the results, either click the add comment link at the bottom of the page and leave a comment or visit the Survey Results Thread in our reflux forums which has been set up specifically to discuss the results.

Full analysis of Parentsown.co.uk Gastro Oesophageal Reflux Survey:

There was no significant difference in gender – only slightly more were boys.

26% of the children with reflux in our survey were born prematurely (compared to the national average of premature births in 2006/7 of 8.6%)

19.86% were tube fed in first few weeks of life

For those children who had recovered from reflux, this recovery took place anywhere between 7 months and 5.25 years

Symptoms

We looked at the most common symptoms of reflux and found the following:

31.21% of parents rated their child’s vomiting as severe. 13.48% said their child didn’t suffer any vomiting at all.

14.89% of parents said their child suffered severe projectile vomiting but 31.91% said their child didn’t suffer from any projectile vomiting.

51.06% of parents rated their child’s screaming episodes as severe,

46.10% of parents rated their child’s sleep problems as severe and only 7.09% didn’t suffer from any sleep problems at all.

Reluctance to feed and distress at feeding was rated as severe by 33.33% parents and only 7.09% didn’t suffer at all. Needing to feed small and often was rated as severe by 46.10% parents whilst only 8.51% didn’t suffer from this problem.

Only 13.48% of children suffered from severe weight loss and 39.72% parents said their child didn’t suffer weight loss at all.

Back arching was severe in 39.72% of cases and only 4.96% didn’t suffer from it.

Treatment

5.77% of parents said that they were offered no treatment at all by their GP. 30.77% were only offered Gaviscon and 11.61% were offered non-drug intervention e.g. thickened feeds.

73.08% said the treatment offered by their GP was unsuccessful

67.31% of children were eventually referred to paediatrician

Once referred to a Paediatrician, only 1.42% were given no treatment and 7.8% were only offered Gaviscon with no drug treatment.

Support and Information from Medical Professionals

80.85% of parents said that a lack of information and support from the medical profession made looking after a reflux child more distressing.

We asked parents to rate the support and information they received from their midwife, health visitor, GP and paediatrician. A high percentage said that information/support from their midwife was irrelevant so we have left this out (presumably as reflux symptoms became clearer after discharge from midwife).

Parents rated the information they received from their medical professionals from 1 (useless) to 5 (extremely useful). Health visitors had a mean score of 1.68, GP’s got a mean score of 2.14 and Paediatricians got a mean score of 3.34.

Parents rated the support they received from their medical professionals from 1 (unsupportive) to 5 (extremely supportive).

Health visitors had a mean score of 2, GP’s got a mean score of 2.19 and Paediatricians had a mean score of 3.06

Coping With A Child With Reflux

We asked parents to rate how they found coping with a child with reflux. They rated on a scale of 1 (never experienced) to 5 (experienced frequently).

The results are as follows:

Stress and Anxiety 4.36
Depression 3.41
Loneliness 3.47
A lack of emotional support from friends and family 3.04
Feeling unable to cope 3.75

Other Problems

48.23% of parents said that their child has signs of food aversions or feeding problems.

38.30% said their child has developed medical complications as a result of reflux.

Of these complications the most common after feeding problems was Apnoea and Respiratory Problems (30%) and oesophagus problems (6.34%)

59.45% of parents said that their child also had known food allergies and intolerances.

10.8% of the children suffered from eczema and 30% had Respiratory Problems.

Parents Comments

“I have found forums on the internet a godsend without them I think I would be on drugs myself for depression.”

“Health professionals need to realise that a baby does not have to lose weight for reflux to be a problem, my son has no weight issues and I have felt continually fobbed off because of this.”

“My son displayed signs of reflux from 12 days old, not so much vomiting, but acid rising. I explained this to my Health visitor who showed no concern for neither my son or for me who even though I explained I was getting 3 hrs max sleep per night. When referred to our Pediatrician she tried saying it was him not being able to self soothe…”

“My daughter has silent reflux…… she still suffers from it, and we are still trying to get to the bottom of food intolerances as well. We haven't had a night's sleep in 11 months.”

“This is my first child, and I don't know if would ever have another baby as it has been so difficult so far. I don't think we would cope going through it again…”

“Medical professionals are, on the whole, not educated well enough about this condition. I was made to feel inadequate and like a neurotic first time mum..”

“I just wish medical professionals in general knew more about breastfeeding infants with reflux.”

“The only way I found out my child had reflux was through internet research done over several months. No-one believed there was anything wrong except me, despite the fact that my son was in distress daily, unable to sleep, refused to feed and had green diarrhea because of milk allergy.”

“Having a baby with severe reflux is a very isolating experience. until you have seen a reflux baby scream with pain it is difficult to understand…”

“my daughter is now 2.5 years and still frequently wakes during the night screaming due to reflux”

“My son …had symptoms of reflux since I brought him home from hospital when he was a day old! I explained symptoms to anyone and every one that would listen! He was constantly gagging and choking so I rushed him into A+E as I felt this was the only way some one would take me serious…. I feel there is lack of support..”

“As our child was putting on weight still we received very little support as they thought he was ok even though he screamed 24 hours a day, 7 days a week, Weight is not everything in our opinion!!”

“I diagnosed my child with reflux and milk intolerance from what I had read on the internet, nobody suggested it to me; the Dr agreed with my diagnosis and the health visitors were completely useless. The Dr contacted the health visitors to tell them to get in touch to offer me some support; 1 month on and I’m still waiting! It’s a good job I’m not depressed I could be suicidal by now.”

“My child experienced food allergies until he was one as well, and severe screaming whilst being weaned, also developed increased tone in his legs due to the pain, which meant we had to go through the worry of a possible neurological diagnosis, thankfully it was the reflux that had caused it.”

“Reflux is evil, it destroys family life”

“Reflux was mentioned by health visitor in response to our concerns but no treatment was offered. We basically had to get on with it. It made visiting friends and social outings difficult as we had to be prepared for her to vomit after feeding…”

“We were told our daughter had silent reflux so were told she only had colic”

“GP refused to diagnose reflux as little one was gaining weight so said it couldn’t be reflux..”

“I was exhausted and could hardly leave the house because they were constantly sick and needed complete new outfits every time and then was starving again!!”

“We (but especially my son) suffered due to poor diagnosis from my GP, in desperation we went to A+E for help where the paediatrician confirmed what we had as parents has diagnosed. Thank God!”

“We were dismissed time and time again as him just being sicky and we only discovered through an appointment for something else he had severe reflux. No one listened before.”

“A year later we're still waiting for a diagnosis! Our child is now 18months old is on Enfamil and still can only eat pureed foods”

“I weaned her at 15 weeks, and she improved beyond measure. No one would listen to my concerns about her screaming, not feeding etc...And thought me a neurotic first time mum. In the end, I did what I thought was best on instinct and was proven right. It angers me to this day that my fears were so harshly dismissed.”

“Have been told by professionals that I should get on with it and what’s a bit of sick!!! Also what should I be worried about as he is thriving!!! And only through me pushing has my little boy been given medication.”

“My GP didn’t know what was wrong with her. I told him that I thought she had reflux but he didn't think it could be that because she was in pain??? Sent to children’s ward at local hospital. Nurses kept saying that she had colic because she wasn't losing weight and treated me like an anxious mother.”

“The symptoms of reflux are not well known by GPs or health visitors and they should be! This lead to months of unnecessary trauma for my child (and us).”

“Lack of understanding among the medical profession and general society causes mothers of reflux babies to become very stressed self diagnosing their children and demanding answers which should be more available”

“We’ve been given very little information and support and have had to diagnose our children from the internet, we’ve been told that reflux is the same as colic and so he just needed gripe water, another doctor said he didn’t see what I wanted him to do other than come and do the night shift, and another suggested that our son was fine because he was gaining weight and I must just have post-natal depression! The lack of help and support (especially from health visitors) was enough to give anyone depression.

Your Thoughts

If you'd like to comment about these results, either click the add comment link at the bottom of the page and leave a comment or visit the Survey Results Thread in our reflux forums which has been set up specifically to discuss the results.

Contact

If you’d like to understand more about the survey results, would like to get a copy of the raw data or a copy of the results or even if you’d like us to post another survey about other medical matters then please contact us at: The Webteam at Parentsown