Our feeding and reflux journey

I have two little boys who mean the world to both my husband and I, they are our everything and yes this sounds clichéd but I cannot imagine our life without them. They are both our little IVF miracles and we still can’t believe just how lucky we are. My eldest has severe feeding difficulties, food aversion, food avoidance and delayed oromotor skills, which according to our speech therapist have evolved due to his reflux. He was diagnosed with silent reflux by our GP at six months old, this later developed into anything but silent reflux and we have to be so careful that he doesn’t get too upset, too excited or cough too much as everything comes up through his mouth and nose. He still coughs overnight all night and has recently had a barium swallow (a type of x-ray) which just confirmed his gastroscopy diagnosis of reflux. They think it’s perhaps more of a positional thing at night time, but it’s horrible hearing him cough and it disturbs his sleep. He was originally placed on Zantac, but it didn’t seem to help that much, I did some research and approached my GP a few months later with a request for Losec. After attending the RISA conference in Brisbane last year she referred us to our Paediatric gastroenterologist and our amazing speech pathologist in Brisbane, who both spoke at this conference. Our GP has worked closely with us throughout this journey and we are thankful that she able to put us in touch with our Speech Pathologist and helped us work through it, trying to get to get to the bottom of it all.

My son associates food and feeding with pain and has learnt not to eat as a protective and defensive mechanism. He is 21 months old and still on pureed foods, unable to chew and swallow ‘normal’ food. His diet consists heavily of custard, yoghurt and a variety of two or three pureed packet foods. I have spent hours in the kitchen cooking for him, or ‘gook,’ as he calls it, only to have it thrown on the floor or carried around in his trucks. He will touch, smell, take tiny bites and try to chew but is unable to swallow pieces of food.

He will still gag on custard and yoghurt if it’s too gluggy, if it goes in the wrong way, if he is having a reflux surge, teething etc. At times he will throw up whilst eating. His food refusal is extreme in that he will not let my husband or I feed him and never has, we do all sorts of crazy things at mealtimes to try and get some food into him. The medical profession began to push us to ‘give him more food’ at around 8 months old. This is ok if your baby eats, ours however was never keen on eating…

The stress placed on us for him to gain weight and the constant and ever present threat hanging over us of having him fed through a nasal gastric tube takes its effect on me daily. There are days when I just sit down and cry and these days have become more frequent of late, I think maybe it’s because it has been going on for well over a year now and I truly am exhausted. I cry for him because I know it hurts him, I cry because I hate having to get him to do something he so clearly doesn’t want to do, I cry for him because I’m worried that he is not eating enough, I cry for him because twice now he has been diagnosed with failure to thrive, I cry because this makes me feel like a ‘failure’, as his mother. I cry for myself because, at times it feels like all I do is try and feed him and put weight on him, I cry because our whole day revolves around food in one way or another and I cry because of the unfairnesses of it all. If his weight was better then we could afford not do this day in and day out and let him experiment more with food. Each mealtime is a battle zone, I have learnt to despise percentile growth charts, I constantly weigh him as I need to see him putting on weight but it devastates me if he hasn’t, or worse, has lost weight. I hate being the food police and I worry what he thinks about me, because I am always trying to feed him and he doesn’t want to eat.

I see the look on his face and the determination in his eyes, as it has become psychological for him too, as he pushes it away, turns his head, spits it out, kicks me, throws things on the floor while I sing, dance, tell stories, provide him with toys, TV, iPad, my phone, kitchen utensils, containers to stack, anything to keep his mind off eating so that I can try and put food in his mouth. I wake in the mornings excited about seeing my boys and then I remember that breakfast is not far away and my stomach churns, my heart races and my headache comes back along with that sinking feeling in the pit of my stomach that occurs before each meal. We battle through breakfast and more often than not he won’t eat it. I offer finger food for morning tea, but I never pressure him to eat then as I want some part of his eating not to be about pressure. Then lunch time rolls around and that sick, stomach churning, heart racing feeling comes back again, and again we prepare for battle. In the afternoon we play with food, he tips milo over the table, squishes cheese into his arm, throws sandwiches on the floor, mixes milk or juice into fruit and laughs as I mime chewing actions and eat for him, I love these sessions as there is no pressure and he loves them too. But dinner is not too far away and it begins again. This meal is usually handled by my husband who is an amazing support, but the majority of feeds are my responsibility as I am lucky enough to be at home with them for the time being. I have a small sense of hope that when his brother begins solids in the next few months he will want to eat like his little brother and may eat a little better. Then there is that fearful part of me, that anxious part of me that is petrified of it happening all over again with his little brother.

He will sometimes eat when he is distracted, but as soon as he remembers he is eating he will raise his arm and fend me off again and again and again and again and again… I don’t want to be the food police anymore, I want food to be his choice and I want him to be able to sit down and pick and choose what he wants rather than me choosing and pumping it full of calorie powder, butter and cream in order to increase his calorie intake. I want him to be able to eat normally with his friends, I want us to be able to go to parties and bbq’s and hang with friends and family and not have to sneak off to feed him in the car because he won’t eat in front of an audience and my husband and I can no longer smile and nod at the ‘helpful’ comments from onlookers, on how to feed our child, when we have tried everything and more.

My son’s case is complicated and we need someone who specialises in this field, someone who can help and someone who understands just how tough this journey is. We see an excellent private speech pathologist in Brisbane, but this is a seven hour drive south for us.

Being in a rural area and away from the help we so desperately need is difficult, we have been involved in Skype sessions with our city speech pathologist, but it’s difficult over a blurry and fuzzy screen that drops out for her to see exactly what is going on and for my son to interact effectively with her. She is the only person in a long line of specialists who has been able to help us… I would love it if we had better access to professionals of her experience closer to us. I feel so alone, the medical profession don’t always understand and have all offered a myriad of varying advice, we have had everything from blood and stool tests to a gastroscopy and allergy testing done. We have seen a natropath, nutritionist, dietician, allergist, gastroenterologist, paediatrician, occupational therapist and speech pathologist, in a long list of people to try and get some help. I feel like I have been left to flounder around a bit by the medical profession. I have had to do a lot of my own research and go to them with it, and whilst they want to help, their understanding of reflux and in particular feeding hasn’t always been as helpful as I needed. My speech pathologist has this understanding and is able to help where the medical profession haven’t. If it wasn’t for my GP referring us to her, we would still be at a loss as to what to do.

I knew of reflux before I had my son, but I certainly didn’t realise the impact that it would have on us, sometimes I wonder what my son or I did in a past life to deserve this. Some days I get so frustrated with the world and I am tired, really tired of battling each day, I want to be his mum, I want to be there for him and hold him when he is upset at the table, I don’t want to be the person who fights him every day to make him eat puree because he can’t and won’t eat food on his own. It is a long journey and one that right now I can’t see an end to, I joke that I will still be trying to feed him when he is twenty, but to me that is exactly how it feels. I’m currently looking at a feeding program in Adelaide, we are so desperate for help we will do anything. We have exhausted our list of specialists and have been to a sleep and feeding clinic in Brisbane run by nurses who, while they had the best of intentions, were not able to help with his feeding and were confused by his reflux vomiting. I feel like I am at a complete loss, we use our car as a restaurant as he seems to eat better in the car but even this isn’t working these days. He wants to feed himself and I am thankful for that because I know that there are cases out there that are worse than mine and I feel bad for complaining when I know this, but I live his everyday and I worry about the affect it will have on the way he feels about me. I love him and his brother more than anything and I’m so scared he will end up hating me because of what we go through each day.

I know that there is no quick fix and I know our journey will be a long one but one person that has been on our side all along, the one person who has been able to help him progress at all is our speech pathologist in Brisbane. Since I wrote the first part of this, we have just returned from attending a week intensive with our private speech pathologist and occupational therapist in Brisbane.

They were both amazing and for the first time in over a year, I have some hope. It is still going to be a long and complicated road, but the system that they have put in place for us seems to be working. We can’t believe it, but it is! Breakfast is still our worst meal by far, but my son has now put custard in his mouth all on his own! Of course this brought me to tears because I was just so happy to see him willingly put food in his mouth and eat it! He is learning to chew and swallow and we now have a plan and set goals and have been taught the skills to teach my son, to begin eating. I cannot explain the relief and joy that we have experienced over this last week, although it will be a long time before he sits down and eats a meal on his own, we can see small successes and to us, a mouthful of custard or swallowing a tiny piece of chicken are huge! Before this he treated all food as puree and would end up gagging on it.

I cannot stress just how important it is for people in our situation or similar situation to have access to professionals who specialise in this field, our speech pathologist has become our sanity and for the first time since my son was born, as he struggled with drinking from the start with his first days in NICU and later with eating, I have hope! My mindset about his eating and food has already begun to change and this is all because of the wonderful help we received recently from our speech pathologist and occupational therapist in Brisbane.

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