Living with Reflux UK

Throughout the last months I have received fantastic help and support from Living with Reflux UK.

This web site was set up by a grandmother who found that there was little information available to families living with Reflux in this country. On the site you can find a wealth of information and personal experiences. There is also as well-used message board, chat room and links to other sites with reflux information.

The members at the Living with Reflux support site are currently looking into ways that they can raise the profile of reflux and educate GP's who don't acknowledge this condition. They also hope to be able to set up a Helpline for carers without Internet access, as the stress of coping with a reflux baby is enormous.

I cannot thank this site enough for continuing to help me through the black periods until the day / year that my daughter grows out of this horrid condition.

Email: LivingWithRefluxUK@beta.communities.msn.co.uk

http://beta.communities.msn.co.uk/LivingWithRefluxUK

There is also a new support group being set up for UK based parents with babies/children with reflux that you can find at:

http://health.groups.yahoo.com/group/infantrefluxuk

Your Experiences

Hi! My son Noah, who is not sixteen months, still suffers from reflux! He was diagnosed with silent reflux at two months, and we have suffered with severe eating aversions since then. For many months, poor Noah would scream and arch through every feeding, and some days, he would hardly eat at all. I cannot tell you how many bottles and formulas we tried before we found the right combination! Noah also went through so many tests including the upper GI, endoscopy, and pH probe. Noah is now on Zantac and Prevecid, and there is no sign of the end of his reflux. It is depressing, but we seen to have that aspect at least controlled for now. He still gags himself to vomit often, and he doesn't take interest in food like other children his age, but we are now surviving!

Myself and five other moms have created an active support group at www.momswearingpuke.com . We encourage you to check it out and register as a member so we can chat!

Maggie

Our baby son (now 13 weeks old) initially had chronic colic, and after having a mixture of expressed breast milk and formula eventually went onto formula only. His vomiting up of whole feeds through his nose and mouth caused us to seek help.The health visitor suggested he was 'just a sicky baby', and the GP suggested reflux. Infant gaviscon didn't seem to help, Cow & Gate comfort milk didn't either.He is currently on SMA Staydown, which I'm not sure is any better. Has anyone tried Goats milk formula as this has been suggested to me buy a health food shop?

Heather

oh what fun we all have with reflux children and babies. My little man is 26 weeks old and is now going up the weight but is back on domperidon. we were told weaning would improve but half a spoon of food and 3 hrs screaming.were back to staying on sma staydown milk for another 2weeks its a great milk hes been on it abt 20wks. now hes got a bit bigger we get abt 4hrs sleep without him waking for bottle. good times are happier than bad days

Claire

My Daughter Scarlett is now 4 months old and after an initial 14 day stint in Special Care following a diagnosis of Pulminory Hypertension she was welcomed home along with her mum and our lives together began in ernest. Initially, as with most newborns, she slept alot and fed often however we noticed that after a feed she was usually sick. She was breast fed and the Health Visitor advised that the bringing up of milk after a feed was common in babies and was nothing to worry about. We were told that perhaps my wife was producing too much formilk and she best express milk prior to feeding our daughter. This had no effect whatsover other than making our baby hungrier. We also noticed that she was windy as well as being sick and after a few further visits and complaints by us to the health visitor she was 'diagnosed' as having GERD. Infant Gaviscon was the order of the day and we were told that she should be given a sachet per feed - difficult when our daughter was being breast fed however my wife began expressing in anticipation of feeds and supplementing the her breast milk with formula. The problem went from bad to worse as our baby then seemingly went off the breast milk and favoured the formula milk which agreed with her less. She is now on two sachets per 225ml feed and is extremely sick after each feed, ny wife had to stop breast feeding which she was unhappy about.

Again we are advised that it is nothing to worry about and the problem will simply go away. I hate to question this advice however often a little research on the internet helps put your mind at rest and consequently I have read with interest other parents comments on GERD.

Paul

My baby is 6 months old and only recently have been told he has reflux after visiting the local hospital,because every time I told my health visitor she said babies are sick and he's very colicy. He is now taking infant gaviscon, but told it should get better by 9 months but I never realised that his condition could get worse. He crys alot less and does enjoy rolling on the carpet. Does any one have any idea if I should stop the gavison or not? My own doctor who I've seen was rather vague. - Amanda

My daughter Hannah was diagnosed with GastroEsophageal Reflux when she was four weeks old. She has a version called Silent Acid Reflux which means that instead of the stomach acids being diluted in milk and her being sick (what most people associate with the term reflux) the acid travels up and down her oesophagus neat, causing her incredible pain and internal damage. There is also the added risk of the acid travelling up so far that it reaches her windpipe (which is immature) causing it to collapse and her to stop breathing which she has done twice!

As well as the "going blue" symptoms that she worried us with, Hannah had some other classic reflux signs:

• arched her back;
• very distressed and irritable;
• heavy swallowing noises;
• hiccups;
• windy;
• disturbed sleep;
• feeding little and often.

The symptom that most people associate with reflux is vomiting and poor weight gain which Hannah never had. This has been a bit of a double-edged sword for her. On the one hand it's been very reassuring to see her weight and height follow the 98th Centile line on her charts but on the other I'm constantly told by kindly family members and some medics that there can't be much wrong with her as she looks so healthy! Not only is this incredibly unsupportive for a Mother who has come close to losing her precious daughter too many times it's also not very helpful!

Hannah's weight gain was probably due to her constant breast feeds that enabled her to wash the acid back down her throat and give her some comfort, something that is very typical in silent acid reflux.

She is now 9 months old and beautiful! She still has major problems accepting solid food due to the discomfort, has to have her milks thickened and is on an adult strength drug to inhibit the acid production. To date she has had a barium feed test and very upsettingly an endoscopy under general anaesthetic. We have been warned that she may need an operation when she is older unless we get a better control of the condition. On the whole she has responded well to the newest drug that she is on (she's gone through a few!) but we do have a lot of bad days and weeks. I've likened life with reflux to a Snakes and Ladders game: just when you think you are moving forwards you slide down, sometimes back to the start and have to pull yourself back up again!

We are hoping to try to reduce her medication when she is one year to see if she can manage with less, which would be fantastic. Hannah also has the head end of her cot propped at a 30 degree angle and is kept upright as much as possible after a meal. This has to be balanced against what she needs physically for her normal development, e.g. to be given the opportunity to roll, crawl etc.

Her prognosis originally was that like the majority of reflux babies weaning will "cure" the condition, as the solid foods will help keep the acid down. Unfortunately this made Hannah a lot worse and she screamed in agony for 50 minutes after one spoon of baby rice. Weaning has therefore been very slow. We are now hoping that she will fall in with the next group of reflux babies and find that walking and gravity will make the reflux better. I've got to admit though that the upset of the first milestone and seeing Hannah actually get worse has made me reluctant to pin too much hope on this.

Due to the feeding problems that Hannah has developed through reflux she is regularly seen by a speech therapist who advises on consistency of the purees, positioning and general feeding and eating development. At the time of writing this I'm really proud to say that Hannah can now cope with 3 meals a day of at most 28g of puree and enjoys sucking the chocolate off a Kit Kat with the best of them!

Unfortunately so many of the symptoms of reflux are similar to Colic which is what a lot of "reflux" babies are incorrectly diagnosed with. No amount of Gripe Water will help a reflux baby!

My son was only diagnosed with kidney reflux after a test for a UTI which showed he had Ecoli at the age of 3 months. Further tests - barium meal showed he had stomach reflux. He has been on gavisgon, domperidone and omeprazole ever since. They told me that when he started to develope more ie crawling and walking that he would be significantly better as he would be growing stronger. No such luck. He has infact got worse to the extent that his medication has been quadrupled since the initial diagnosis less than a year ago. I feel that if he has a bad week and he needs to see a doctor they seem to fob me off with a stomach bug. How many bugs can one poor under weight child get in a year. I feel that it is to do with his throat and stomach with some form of a fear of swallowing. If he is sick I will feed him again 30minutes later as he is so hungry. He has no fear of swallowing, no pain association with food. It is so frustrating. I tell the hospital and doctors that I do not want him treated as an experiment yet they just give more medication or try a different one. Well no more. I am his mum and mum says no more. They now have a battle on their hands when they meet me in a couple of weeks, just you wait... - Lisa

My daughter was diagnosed with Acid-Reflux but she recently heard that someone said Chronic Vomiting Syndrome is often misdiagnosed as Acid-Relux because she often vomits and has severe pain in her chest. She is 21 years old and I wonder if you have any thoughts on this. Thank you. - Sharon

My youngest daughter had the same problems when she was a baby, almost as soon as she was born, going blue several times and projectile vomiting.

She was admitted to Special Care baby unit for further tests and several tests and lots of worrying later she was diagnosed with reflux. I took her home at two weeks old and the 'going blue' carried on. More tests followed and medication was given and I finally brought her home another week later.

She is now 9 years old and doesn't have the problem anymore. It does get better! - Best wishes, Carol.

My 11 week old daughter was recently diagnosed with Acid Reflux. When my doctor said it was reflux after I described her symptoms, my response was "you think so? But she doesn't throw up that much." She said she doesn't have to. It's like having chronic heartburn. And I thought oh, no wonder she's been so uncomfortable. I always thought reflux was about throwing up all the time.

I have been scouring the Internet for as much information as I can get my hands on because recently we had an experience as Massachusetts General Hospital in Boston Massachusetts, that has empowered me to be in full control of any and all medical decisions to be made in pursuit of how severe her reflux is.

If I had let the doctors there dissect her at their own will they would have and I finally had to put my foot down and say to everyone back up, ONE STEP AND TEST AT A TIME! I also learned that if you don't ask, they, being the doctors, feel that you as a parent are only on a need to know basis. Obviously this didn't sit well with me and after being told numerous things concerning further tests, partially agreeing until I would arrive where the test was to be performed only to find out that it was actually more involved and invasive!

That's when I decided to exercise my PARENTAL RIGHTS and say stop. You have unjustly traumatized my newborn. If my daughter does not have a "life threatening condition" then I feel that all of the recommended testing to be performed can be done one at a time and they do not have to be done at this very instant.

Please don't misunderstand this for being ungrateful for the good medical care she was receiving but at the same time they were rushing her through numerous tests in less than a 24-hr period. She wouldn't eat and wouldn't stop crying and I honestly felt that it could all be accomplished in a more organised manner.

Thus you find me searching for as much information as I can get my hands on. My hope is that I will then be completely "loaded" with as many questions as I need to ask to get the answers I am looking for when it comes time for the next round with specialist doctors. Knowledge truly is power!

Good Luck to the rest of you on a quest for information, answers and maybe even some relief for you and your little ones with ACID REFLUX! - Sincerely, Gina Mohan, Devoted Mom

"Our son who is 11 has been unwell since September 2003 following a virus infection in his tummy (vomiting and diarrhoea). Other children at the school recovered after 3-4 days but our son didn't and in October I took him to see our GP who recommended we gave him Gaviscon for two weeks. No change occurred and we went back to the surgery, to cut a long story short, he still has reflux occasionally (where the bile goes up as far as the back of his throat) and we have ruled out ulcers and other major physical problems through an endoscopy in February.

He has had blood tests done that revealed low iron and nutrients but no anaemia, his teeth started to be discoloured with big whiter stains on them. A celiac screen blood test revealed that he is on the borderline of the disease, which could explain some of the symptoms but what I have now concluded is that his reflux and stomach pains are probably due to lactose intolerance and he is taking lactase enzyme prior to eating and this is definitely helping.

He has been on a gluten free diet for the last six weeks and some improvements have been noticed since then but he is much better since he is monitoring his intake of diary products. We have had little help from the Consultants and all the work and research has had to be done by ourselves.

I have asked from the beginning to have him tested for food allergies but the Consultants and GPs all refuse to write the referral letter. Guy's hospital holds an allergy clinic everyday of the week so why our doctors here do not believe in this form of testing is a mystery to me.

There is hope for reflux sufferers but I do believe that if there is no physical damage to the digestive tract then it must be due to a food allergy. Unfortunately it is left to the sufferer and parents to find out it can be very weary and discouraging." - Patricia

BOOK FEATURE

Making Life Better for a Baby with Acid Reflux

Tracy and Mike Davenport

Making Life Better for a Baby with Acid Reflux can help guide you through the ins and outs of the emotionally and physically draining times that can accompany caring for a baby with acid reflux.

The authors, Mike and Tracy Davenport, have written this book from their personal experiences of coping with life when their second son was born with Acid Reflux disease. As they emphasise this is not a medical guide. Instead, it is a book packed with supportive suggestions and their own accounts of how they learned to make life as best they could for their sons and themselves.

In this step-by-step book you can find:

• information about why you need to research, and how best to do it;
• handy checklists to make sure you get done what needs to be done;
• distinctive forms you can use to log your baby's signs, symptoms, and medications;
• how to determine if you might be heading for trouble and/or need to recharge your batteries;
• what pitfalls might be out there for you.

www.makinglifebetter.org

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