The Information centre is a resource that is created by the users of Parentsown.co.uk.
If you have information (white papers, useful links, studies, advice etc) that you think other parents could benefit from add a page (using the link below) to create a new page in the Reflux - Gastro Oesophageal Reflux Disorder (GORD, GERD) Information centre book.
All links will automatically turn in to a web link, and you can attach files (pdf's, Word documents etc) if you wish.
The more pages we add the more information there will be for parents to search on.
WE NEED YOU! If your child suffers with GORD we really want to hear from you. We have a survey that we are asking parents of children with GORD to complete. We want to learn more about your experiences. All answers will be anonymous but we will publish the aggregated results.
Take the GORD survey now by clicking this link
To read more about this research, follow this link:
I thought i'd give our experience of a barium swallow / meal for the benefit of other parents who may be nervously waiting for their child to have one done.
Our son had 2 barium swallows/meals - one at the age of about 6 months and then again at age 3. I've summarised the one done at age 3 as i can remember it more clearly!
Our son was still having symptoms of reflux (vomiting, food aversion, sleeplessness, stomach aches etc) at 3 years old and so we were told to have another barium meal done. He had to have nil by mouth from 6pm the night before. When we arrived at the hospital our son was given a barium drink which he drank - despite the fact it tasted disgusting!
After a short wait, he was then asked to lie on the x-ray bed and x-rays were taken from a number of different angles. A few times he was asked to drink whilst lying down and they x-rayed him whilst he drank. The x-rays showed he was refluxing whilst he drank but revealed no other abnormalities.
I was dreading this investigation as i thought my son would never drink the barium drink and i thought he'd be upset but he was fine! He coped really well and I was able to stay with him and touch him throughout.
I rewarded him afterwards with a present and his favourite food/drink.
If you are looking for more information about Barrett's Oesohagus then check out this site: http://www.corecharity.org.uk/Barrett-s-Oesophagus.html
It explains what Barrett's Oesophagus is, the symptoms, diagnosis and how it can be treated. It also gives some helpful top tips aobut reducing reflux such as losing weight if overweight, eating smaller meals at regular intervals and not going to bed immediately after meals.
Breast feeding a baby with Gastro Reflux is really rewarding and some say breast is best for reflux babies as breast milk is quicker and easier to digest. It can be challenging though and my boys were both very restless at the breast and needed to feed on and off all the time – I’m really glad I stuck with it though as it did get easier with time.
If you are having problems then you could try some of the following tips that I was given by other mums and by breast feeding counsellors:
• You could try feeding your baby in an upright position – one technique is sitting forward on sofa and holding baby at the breast with their legs between your legs so they are horizontal. You can also try feeding them on a pillow/cushion that is slanted downwards so that their lower body is below the level of their head. Other positions are shown on a website called ‘Breastfeeding a baby with reflux’ http://www.users.qwest.net/~fsdebra1/refluxfaq.html
• Try holding your baby upright straight after a feed in a baby sling for at least half an hour. You find your baby settles better in between feeds if they are in a sling. Personally I found the best sling was Kari-Me as it didn’t have any straps to dig in. You can see them at http://www.kari-me.com/
• The best advice I was given from a breastfeeding counsellor was to think about things in my diet that could be a problem – dairy is a common culprit and taking it out of my diet improved my sons reflux significantly. Some reflux cases are connected to allergies and intolerances. Make sure you ask your GP for a referral to a dietician if you are going to do an exclusion diet for a long time as you may need calcium supplements or advice on ensuring your diet is balanced enough for your babies needs. If you decide to mix-feed or change to bottles then consider whether your baby should be on a special formula – doctors can prescribe hyperallergenic formulas – avoid soya based formulas though as recent research has suggested it could be bad for babies (check out http://www.telegraph.co.uk/news/worldnews/northamerica/usa/1394918/Warni...).
• Try feeding your baby small and often and don’t worry about getting your baby into a feeding pattern – this often can’t be done with a reflux baby and I found it easier to just feed them when they wanted to be fed.
• Burp your baby regularly throughout their feed if they have problems with wind.
• At night, try holding your baby upright after a feed or consult your health visitor/paediatrician about the possibility of putting your baby to sleep on it’s side. You can buy baby sleep positioners to help support your baby - I used one similar to this: http://www.jojomamanbebe.co.uk/detailfash.php?type=FASH&code=A6880&prodd...
However, remember that cot death advice suggests babies are safest sleeping on their back ( advice from FSID - www.fsid.org.uk/)
• Midwives and health visitors can be contacted through your local maternity hospital and GP practice and some maternity units have feeding counsellors and walk-in support groups. I didn’t find them helpful with regards to feeding reflux babies but they did give good general advice about breastfeeding.
• If you are thinking of giving up feeding as it’s getting too much then think about mix-feeding. Even feeding your baby some of the time is really good for your baby!
• The Breastfeeding Network sometimes have counsellors that will come to your home and watch your baby feeding - they then take you through different positions and can give advice on dietary changes. I found them extremely supportive and they were the first people that suggested my sons reflux may be connected to a dairy allergy – and they were right!!! Their contact details are given below.
The following are some Support Organisations and Information Sites:
BFN Breastfeeding Network
http://www.breastfeedingnetwork.org.uk/
BFN Supporter line 0844 412 4664
National Breastfeeding Helpline: 0844 20 90920
Find your nearest Breastfeeding Centre by using the BFN Locator: http://www.breastfeedingnetwork.org.uk/support-centres.html#map
Email: breastfeedingnetwork@googlemail.com
Breastfeeding a baby with reflux site: http://www.users.qwest.net/~fsdebra1/refluxfaq.html
Australian Breastfeeding Association have an information sheet:
http://www.breastfeeding.asn.au/bfinfo/reflux.html
La Leche League Information sheet on breastfeeding a baby with reflux: http://www.llli.org/FAQ/ger.html
‘Breastfeeding the baby with reflux’ booklet
http://www.lllgbbooks.co.uk/shopping/go_shopping/booklets_and_informatio...
NCT
Breastfeeding Line 0300 330 0771 8am-10pm seven days a week
www.nct.org.uk
They have local breastfeeding supporters who you can contact through your local branch. You can find your local branch via their website.
La Leche League
http://www.laleche.org.uk/
Helpline: 0845 120 2918
The La Leche League have a Fequently Asked Questions (FAQ’s) section: http://www.llli.org/FAQ/FAQSubject.html?m=0,0,3
Association of breastfeeding mothers
http://www.abm.me.uk/
Helpline: 08444 122 949 open daily 9.30am – 10.30pm
counselling@abm.me.uk
Hope some of this helps someone.
If anyone is looking for something new to try then you could try cranial osteopathy.
I tried it with both my sons as they had colic, reflux, cried a lot and couldn't sleep. both my sons had a 6 week course with a qualified osteopath. It didn't work for us due to our sons ongoing health problems but we know of other people who have highly recommended it.
this website may be of use - http://www.cranial.org.uk and can be used to find a registered therapist.
Emedicine have an article on Reflux – a surgical perspective – it is interesting if you are trying to learn more about reflux and possible surgical intervention. The article is written primarily for health care professionals rather than for families but may still be of use. You can view it at:
Gastro Oesophageal Reflux (GORD, GERD) Survey Results
Thank you to everyone who completed the Gastro Oesophageal Reflux Survey on www.parentsown.co.uk.
We had a phenomenal response and there are some very interesting results which you will see for yourself.
If you want a more in depth analysis of the results, visit our Gastro Oesophageal Reflux Survey Results Page by clicking 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.
Summary of Results
Just over a quarter of the children in our survey were born prematurely which is a lot higher than the national average for premature births. Nearly a fifth were tube-fed at some point. Some children didn’t recover from reflux till they were over 5.
The majority of children suffered from vomiting but fewer suffered projectile vomiting. Over half of children suffered severe screaming episodes, 93% had some degree of sleep problem and back arching affected 95% children. Reluctance to feed affected 93% of the children to some degree and needing to feed small and often affected 91.5%. Interestingly, only 13.48% of children suffered from severe weight loss and 39.72% didn’t suffer from any weight loss at all.
We found that Gaviscon was the most common treatment offered by GP’s and that 73% of parents said treatment offered by their GP was unsuccessful. 67.31% of children were later referred to a Paediatrician.
We asked parents to rate the information and support they were given by medical professionals and the results suggested that there is a lot of improvement that could be made in the support they offer to families with reflux. In particular, health visitors were given the lowest score, suggesting low satisfaction.
80% of parents said that a lack of information and support from the medical profession made caring for a child with reflux more distressing. Results also showed that parents frequently experienced stress and anxiety, depression, loneliness and feeling unable to cope.
Results suggest that over a third of children have developed medical complications as a result of reflux. The survey also showed that 48.23% of parents said that their child has signs of food aversions or feeding problems, 10% suffered from eczema and 30% of children had Apnoea and Respiratory Problems. Interestingly, 59.45% of parents said that their child had known food allergies and intolerances.
Lots of parents left us comments about their experiences and we feel one mother really summed up what most of us have been through:
“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”
If you'd like to comment about the results, either click the add comment link at the bottom of this 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.
The Arkansas Childrens Hospital website has a video recording of a presentation by Chris A. Liacouras, M.D, Professor of Pediatric Gastroenterology. It covers the difficulty in telling the difference between infants with gastro reflux and those who actually have Eosinophilic Esophagitis (EE).
If you are concerned that your childs reflux hasn't resolved or improved with anti-reflux medication then maybe you could ask your consultant about alternative conditions like EE?
Although the video is an hour long, it's really interesting if your child has reflux or EE and gives good explanations about the conditions. The reflux bit is the first 5-30minuts and the EE bit is from 30minutes onwards and you can forward it on to this section.
The link is:
http://www.archildrens.org/video/gr_06.asp
and it's the fifth one down.
I found it interesting that the presentation suggests that 8-10% with of infants with reflux actually have EE instead. Also, it said that 65-70% with dsypahagia actually have EE.
I found this article written by ICH Institute for Child Health - about Nissen's Fundoplication and reflux - i hope it might help someone.
It covers the following topics:
What is a Nissen’s fundoplication?
What is gastro-oesophageal reflux?
What happens before the operation?
What does the operation involve?
Are there any risks?
What happens afterwards?
Are there any long-term effects of the operation?
What is the outlook for children with gastro-oesophageal reflux disease?
The link is:
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/gastrooesophag...
If your child is having a PH study done then you may find the following article helpful:
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/ph_study/ph_st...
it is written by the UCL Institute of Child Health - and covers the following topics:
What is a pH study?
Why is it needed?
What happens before the test?
What does the test involve?
Are there any risks?
What happens afterwards?
When do I get the results?
Hope it helps,
K
My eldest son had problems with lumpy foods due to his severe reflux. He refused anything that wasn't 100% smooth and if i did get him to try anything lumpy he would gag or projectile vomit! He also couldn't cope wiht having his teeth brushed.
He didn't go on to more solid foods until he was over 2.
I managed to get some extra help from the local Speech therapy team - it sounds a bizarre connection but they often have someone who is trained in feeding/mouth problems and they can help you work on 'desensitising' your childs mouth so they don't gag as much.
They also invited us to a 'messy food group' to help my son get used to textures and see food as fun.
You can get referred to speech therapy by your doctor or your health visitor.
Did you know that a lot of babies/children with reflux also have a cow's milk allergy/intolerance?
Act Against Allergy say that 42% of infants with reflux disease have a cow's milk allergy. You can read more about this link by visiting their website: http://www.actagainstallergy.co.uk/aaa_couk/650-diseases-linked-to-cow-m...
If you are concerned that your childs reflux may not be improving due to a link with milk allergy/intolerance then you could talk to your consultant about trying a special formula (e.g. Neocate), or about trying a dairy-free diet if you are breast-feeding or changing your childs diet if they are weaned.
Before changing your diet or your baby's/childs I'd strongly recommend seeing a dietician as they can help ensure you and your child get the right nutrients - especially things like calcium. Your GP or consultant should be able to help with this. It isn't recommended to alter a baby's diet without medical supervision/advice.
Excluding dairy (and a few other things) from our two sons diets has certainly improved their reflux symptoms.
We were contacted by a mother who asked us to post her story. So below find this mothers account of having a baby with silent reflux.
Reflux - The Silent Story
Read any baby book and you will read about Reflux, most babies have it to some degree and this is usually described as ‘positing’ or a ‘sicky baby’. However there is another form of reflux that seems to be a big mystery and in many cases is not even recognised. I hope through writing this article I can at least do my little bit to raise awareness of this most distressing condition.
When my daughter was born in September 2003 we didn’t know that we were about to enter the hardest four months of our lives. Now I know that its hard with a new baby but this was worse than we could ever have imagined.
A few days after giving birth we were aware of a few problems with our daughter. Instead of the ‘nice quiet time feeding my daughter’ that all the books promised, we had a baby who gulped her feeds and wriggled and arched her back as if in pain as she drank. After the feed she would scream the house down and nothing would soothe her, instead of putting her down for a nap we would be pacing the floor with a wriggling screaming baby until eventually she could cry no more and would fall asleep on our chests, only to wake an hour later with a jolt and the routine started all over again.
Nothing soothed her, she screamed when we changed her nappy, she screamed if we put her down to play. The final and most difficult problem was that she could not be put down, now I don’t mean sometimes I mean never, not even in her pushchair, the few times we tried to take her out she became so hysterical that she scratched her face until it bled. At night she slept on my husband and I, upright on our chests, it was the only way we got any sleep at all.
As anyone who has had a baby will know the midwives come to see you for up to 10 days after the birth to check that everything is going ok. Well things were far from ok so every time the Midwife visited I explained the problems we were having. The explanations varied from ‘colic’ to ‘all babies cry’ to ‘a naughty baby’, and after the 10 days and after I had told the midwife that ‘it was a living hell’ we were discharged. So it was on to the health visitor, again I told her of the problems and again was told it was ‘colic’. Now as a first time mother its hard to trust your instinct but somehow I knew something wasn’t right. It took me six weeks of pestering to finally get an appointment with a community paediatrician.
The day we saw the community paediatrician was the turning point. She agreed that something was not right and we were referred straight away to the hospital. Here after the worst two months of our lives we finally found out what was wrong with our daughter. She had Oesophageal Reflux or ‘silent reflux’ as it is sometimes called. In short the reason my daughters reflux was not diagnosed was because unless your baby is vomiting then reflux is not recognised. However, how many adults suffer with reflux? Are they constantly vomiting? No of course not, in adults reflux is more commonly known as ‘heart burn’. So basically my poor baby had severe heart burn, with the acid from her tummy burning her inside. As the paediatrician said ‘she will be red raw inside’.
Now my main reason for writing this article is to hopefully raise awareness of this condition, as with a few simple rules these poor babies do not need to suffer like my daughter did. Obviously if you suspect your baby may be suffering it is essential that you seek medical advice. However whilst you're waiting the two months it takes for someone to take you seriously there are a few techniques you can try to help your baby.
The main idea behind these techniques is gravity, keep your baby upright and the acid is less likely to travel back up from the stomach and burn -
1 Put a pillow under your baby’s mattress to raise it at one end.
2 Place a cushion under your babies head when changing the nappy, after a bath, or placing under a play gym.
3 Leave your baby upright for half an hour after a feed.
4 A dummy really helps to keep the acid down in the tummy.
5 Use the travel seat in your pram so baby isn’t lying flat.
These few tips really helped us and combined with medication life became much better.
Oesophageal Reflux is usually something that most babies grow out of by the time they reach their first birthday and I am happy to say that this was the case with our daughter. I have been amazed by the lack of information on this condition as I understand that it is not uncommon, just grossly under diagnosed. Why are the medical professionals so slow to diagnose the condition when my baby’s symptoms were text book ‘silent reflux’. I may never know but hopefully by writing this I have helped someone somewhere.
http://www.nhs.uk/conditions/Gastroesophageal-reflux-disease/Pages/Intro...
Little Refluxers www.littlerefluxers.co.uk
living with reflux UK http://www.livingwithreflux.org/
Hi
I wasn't given any information about my sons Gastro Reflux when he was diagnosed and I think this is really unfair on parents struggling with a distressed and vomiting newborn baby.... so, I wanted to pass on a few top tips that I was given - I hope they help someone.
1) Hold your baby upright for 30minutes after feeds (I used a sling most of the day).
2) Put something under your baby's cot/moses basket and change mat so their body is on an angle- you can buy wedges/feet for this or make something at home - we used books under the top feet of the cot and wedge shaped foam under the change mat.
3) We were advised not to pat our baby during winding - just to keep them upright and rub their backs in circular motions.
4) If your baby is distressed - don't feel guilty for sleeping with your baby, holding them frequently (I held ours all day or they screamed)
5) Our consultant recommend we fed our sons small and often - sometimes i fed my sons to comfort them and i often had to feed them repeadly if they were vomiting feeds. I was also told they wanted to feed more at night as it eased their pain - so don't listen to people saying they are attention seeking or spoiled - they are often in pain and need soothing!
6) We found Gaviscon to be useless. If it doesn't help then go back - there are lots of other medications you can get.
7) If your baby is in distress then insist on getting a referral to a paediatrician - our doctors were very unsupportive and we had to fight really hard - but it's worth the fight to get help.
8) Weaning problems are common in reflux babies - your local Speech Therapy department probably have a therapist trained in feeding problems who can advise you. You can get referrals to speech therapy from your health visitor or GP.
9) It may be worth trying other milks - we were told by a specialist that reflux can be a sign of allergies - may be worth asking your consultant about this if the symptoms don't go.
10) if your baby has reflux beyond age 3 then it may be something else - you could ask your consultant about having a barium meal to rule out other physical problems? You could also ask about Allergies, Eosinophilic Disease and other Gastro problems.
11) If you have supportive health care professionals then that's great - but if you don't then you are in the majority. Most mums with babies with severe reflux have been made to feel they are neurotic, not coping, some are even accused of having Post-natal Depression. If you feel your baby is suffering then don't listen to them. You are doing a great job - just don't list to anything else and ignore ignorant advice!!!! It is really hard and isolating but things do improve in time.
Hope these help someone out there!
Good luck!
Infant Reflux Disease.com is a useful site for parents with a child suffering from reflux. This site lists things you can do to help your baby yourself, as well as covering medications, surgical interventions and holistic therapies. Visit http://www.infantrefluxdisease.com/treating-infant-reflux-and-gerd.php
It also contains a list of foods and drinks that may trigger reflux. You can see this list by visiting - http://www.infantrefluxdisease.com/help-infant-reflux.php
This article covers all the medications that can be used to treat your childs reflux. It also covers some tips such as avoid over-feeding, appropriate boottles/feeding routines, avoid exposure to smoke, wind your child frequently, keeping your baby upright after feeds, avoid lying your baby flat, raise cot/mattress and other useful tips.
To read the article visit: