Reflux – Diagnosing and living with extreme baby/toddler reflux

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Having had a really tough time with my first baby, who had febrile seizures frequently, I felt sure that my second child would be healthy and well. Surely I deserved a break after such trauma with number 1? We had needed emergency help and hospital visits followed by tests and consultations. My amazing sleeping baby caused me so much concern and worry I struggled to ever get into a deep sleep again.

My second pregnancy was much like my first. I opted for a home birth as I was keen to avoid any more time in hospitals if possible. The home birth was great, Diggory was born 9lb 5oz in 1hr 30 mins. He was healthy and breast fed well.

Later that day, I leant Diggory back onto his changing mat to change his nappy and was horrified to see him gag and unable to take a breath. His head turned and wriggled as it seemed like he was choking on something. My mum rang 999 and I put him back up into sitting position, slightly forward resting his chin onto my hand hoping to open his airways. I straightened his back with my other hand. It was seconds……the slowest seconds of my life. His lips tinged with blue from lack of oxygen but eventually he gasped and took a breath.

Nothing ever takes away those memories of your babies when they can’t breathe. I can describe it as nothing other than the worst moments of my life. Having witnessed it too many times with my boys I can honestly say that I do not think there is anything that can erase the terror you feel when your helpless baby is not breathing. I am scarred for life by what I have had to deal with and I can only hope that my experience and knowledge can be passed on to help others. If I had the knowledge and experience I do now then I may of been able to get the right medication for my children quicker and avoided the hospital trips, invasive tests and trauma to them and me.

Diggory and I were taken by ambulance into hospital. He was tested for various things and was monitored over night. It was thought that it was just a common “baby thing’ choking on the mucus and ‘gubbins’ from birth. He had another apnea episode in the hospital so it seemed he was struggling to clear his airways. I was a little deflated having had such a good home birth that we had ended up in hospital for the night anyway, but was glad that there seemed a fairly straightforward reason for his apnea attack.

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Unfortunately the problem didn’t resolve. Each time I laid Diggory down for sleep or tilted him back into his car seat he would scream or struggle to breathe. It was a desperate, choking gasping that would last for seconds that always felt like hours. I became an over anxious mother and a baby-monitor addict. Unable to let him sleep alone and unable to put him in the back of the car because I needed to keep an eye on him at all times. The Maxi-Cosi car seat was not suitable for him, I had to find a more upright seat with a flat back, (easier said than done for a newborn!) Diggy was really only ever happy upright. He spent ALOT of time in a baby bjorn, upright pushchair or baby contraption, I’m pretty sure this was also a contributing factor to him starting to walk early at 7 months old. He was not happy reclined. His cot was wedged up high at the head end. (Funnily enough it was all my baby sleep training books I used to tip the cot up! Gina Ford was useful in a roundabout way….haha.) He also had a wedge in the cot plus support to keep up on his side. My days and nights merged into each other. Desperate to ‘create night time’ We never left his nursery from 7pm till 6am as I would so often sleep sitting in my (thankfully super-comfy) nursing chair while he slept upright on me. I hear you all shout at your screen exactly what so many Mums around me thought and said, that I was creating the sleep problem myself. Let me tell you straight, that baby was in pain and something was wrong. He was NOT fussing for a cuddle. It was breaking me slowly but I could not see any other option. My baby needed me. Our nights were the worst as I repeatedly tried to settle him in his cot. Eventually he ended up propped up on pillows in my bed next to me. That was the way I eventually got windows of sleep. Trusting my mothers intuition to wake me if he stopped breathing. This instinct has roused me from sleep many times and It has saved their lives. The downside was I didn’t sleep for more than three hours in a row for nearly two years, definitely effecting my own health.

Eventually after tests and tubes and poking and prodding. Diagnosis of baby apnea and allergies we settled on the cause being SILENT REFUX or GERD. Diggory was started on Gaviscon and Ranitidine. It made no difference at all. We moved onto Omeprozole and by then I was begging for more help. Diggy should of been weaning and was struggling with solid food. Our sleep was awful and was affecting us all as a result. I took him to see the doctor and by then my tears had run out. I demanded a Barium swallow test so we could see exactly what was going on. After being asked if I was sure I wanted to put us through it, we were sent for the test. It was not half as traumatic as the choking apnea episodes. Diggory drank a chalky liquid from his bottle and we watched it travel into his stomach, disperse in the acid then travel straight back up his oesophagus to the back of his throat. This acid reflux had been  burning the inside of his oesophagus for so long that it would be damaged for a long time if not permanently. At last I had a cause and a result. I began to research the different medications and natural remedies and therapies, thankfully we  got the help we needed from the doctor after the test. His dose was upped and he was put on Dom Peridone which finally had an effect. There is a difference in the way the various medication works. Suppressors and blockers either work by holding the stomach contents down, or by changing the acidity to alkaline. Often and for good reason babies are started on the least affective minimal dose possible. (As this works for many people it is with good reason) Unfortunately because of the severity of Diggory’s silent reflux these trials had no effect.

In the end I tried so many things to help and I think all of them had some effect. If you are struggling with reflux too please try them. While breastfeeding I avoided acidic food and drink, also dairy, caffeine and spices. Sadly moving onto thicker formula helped too. There are now some super brands like Carabel, Optimal peptic and Neonate that you can get on prescription (and possibly over the counter too) I have spoken to other mothers who have found these milks alone have solved the problems. A wedge in the bed under the mattress or wedges/props / sleep training books under the cot legs can help too. We also tried cranial osteopathy and homeopathy, both of which eased his discomfort.

There are chat sites and forums that offer support and great information sites like reflux.org. Seven years ago there was not quite so much support online for parents coping with reflux as there is now. Sometimes just to know you are not coping alone makes a big difference.

Poor Diggory suffered for years with his reflux and it left him with poor sleep and food associations. At 6 years old he managed to sleep through the night for the first time and is slowly exploring new tastes, flavours and textures. I took the gentle approach and knowing that food and sleep were already things that Diggory associated with intense pain I chose not to add to those painful triggers by forcing him to eat my diet or control crying. Yes it has left me tired and at times exhausted but I would not change how we have slowly moved into a happier place where sleep and food have become a pleasure.

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No root vegetables or fresh fruit pass his lips unless I am super clever hiding them in other accepted foods but the things I can be thankful for are that reflux has made my bond with Diggory super strong. I was able to see him through a really tough time and although he can be tricky he is also full of love and affection. Fighting through has also left him one of the most determined, strong-willed little boys I have ever met. Tough to cope with at times but wonderful attributes to get through life.

Anna x

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