Apart from when we were admitted to hospital, I stopped updating friends and family on my son’s progress because, to be brutally honest, most people’s comments annoyed me. Actually if we’re being brutally honest most people’s comments really pissed me off. If you met someone with only one leg, you wouldn’t say, “Well at least you have the other leg.” Sounds horrible doesn’t it? Doesn’t help the situation either. So why say an equally unhelpful comments to me? Silver linings are great at the right time, but more often than not they are sympathetic comments when you should really be empathetic or just be quiet. Saying things like, “It will get better,” isn’t helpful either. When will it get better? How do you know? Are you aware that not all babies with reflux disease get better? Some have it into adulthood. So please don’t tell me it will get better unless you know when. Or what about the other favourite, “It could be worse. He could have cancer or some other terminal illness.” Yes… that does give me some comfort to know that other families have more horrible situations?? Are you crazy? You want me to be comforted by the knowledge that there are other families who have worse situations? Like their being worse makes mine better? Sorry, I’m not in the business of having a whose situation is worse competition. It doesn’t make ours any less horrible. If anything it makes me feel guilty for being upset at our situation, like I don’t have a right to be upset because other families have it worse.

Yes, this is going to be a rant. Things have been shit lately and it’s been more than tough and apart from my parents who have driven down and stayed with us several times, we are doing it by ourselves. So if you don’t want reality, stop reading.

To add to it all, reliving how terrible things in an effort to keep people updated isn’t fun. Really I’d rather live in denial and not have to realise that, where I thought last night was a good night… In reality I only managed 5 hours of sleep and that was broken up over 4 sleeps, over the ten hours he was supposed to be sleeping. So in reality there was just as many hours spent holding a screaming baby who thrashes and pushes away from you, while at the same time desperately wanting you to hold them for comfort. So where I thought it was a good night, when I was living in denial, now I’ve stopped and thought about it, it was horrible. Maybe that’s why I’m bring such a cow. Six months on next to no sleep could do that.

In hospital the psychiatrist completely understood (I can hear you thinking, “We’ll of course she did, that’s her job.” But believe me, there is no ‘of course’. There is a reason why, even with PND, I didn’t speak to anyone. The couple of psychologists I tried out were terrible. Absolutely hopeless and no help at all.) The psychiatrist also challenged my sense of obligation to keep people informed, yes even family. I thought it was rude not to keep people informed, especially as family would want to know. She told me that if they were helping us, keeping in touch and being involved they would know – they wouldn’t have to be kept informed. That it was not up to me to be keeping people informed. Instead she told me that the few hours I have in the day where I am awake and functional should be spent enjoying the company of my son and daughter or husband (can’t forget my fantastic husband). But my attention especially needed to be given to my daughter who really wasn’t seeing much of me while I dealt with our screaming son. Good point. Point taken. My daughter is having an equally horrible time being woken up all through the night by our little man’s screaming. It’s disturbing for her to see her brother writhe and scream. Often she will come into the room while I’m trying to settle our little man. She will climb up on the bed, sit beside me, pat my arm and tell me, “(Little Man) not happy. He sick. Get Losec?” (Losec is his medication). Yes, sad to say our just turned two year old knows, understands and uses words like Losec, upset, pain, hurts, vomit and reflux in context.

However I know there are people who do worry. I know because when I’ve had friends who are going through things, I’ve worried about them, thought about them every day and prayed at night for them. But it isn’t exactly appropriate to keep calling every day to check in. That is what your mum does and she can. You re-live things for her because she is the one (with your dad of course) who will drive the three hours to come and help when things get really bad. And my parents have, many times. The psychiatrist suggested to use social media. If people were keen enough to know, they’d read about it. Right. So I’m updating you with this blog. But I’m also telling you why I don’t always respond to your well meaning messages. I live in reality enough to write this, then I either want to live in denial and pretend I’m getting more than five hours of broken sleep…. or get some sleep… or hold my daughter close and play with her… or cook things like brownies with her, so after she goes to bed I can eat them all because you can’t self medicate with alcohol when you’re breastfeeding and having to attend to a screaming child all night. When we’ve had a particularly bad night and we all feel horrible, we often go out. So those Facebook photos of us out are because we’re escaping and trying to be a normal family. Unfortunately those outings have often ended up with us pulled over on the side of the road, my little man screaming so much his voice is going hoarse and myself and my daughter in tears… Or huddled in the darkest, noisiest corner of the shopping centre I can find so people won’t hear my little man’s scams or see my tears… I am too scared to take my children out alone. There I said it. I am absolutely petrified to get in a car by myself with my son. Come for a car ride with me and you’ll soon understand. But bring ear plugs if you’d like to keep your hearing.

In saying all that, things have marginally gotten better. Our little man will sleep in his bassinet during the day – well most of his naps. He will sleep for about an hour and wake up happy. Waking up happy is a massive improvement. A couple of weeks ago he’d only ever wake screaming. Most times, instead of taking an hour to settle (which is what was happening pre-hospital visit over the new year), we now only have about 10-20minutes of screaming. We are also getting at least one of his three sleeps each day without any screaming. Nights are hit and miss. We get fluke nights where he sleeps seven hours with minimal assistance. But most nights are blocks of about three hours. If I have to end up feeding him to settle him, often at midnight, I’m lucky to get a block of sleep longer than an hour after that. Clearly not enough sleep to be a functioning adult. Little wonder that I have succumbed to colds and my husband is now sleeping in the other room as he now has a horrid cold because he has been waking with me to help. It is quite soul destroying not to be able to give your screaming child comfort. So it helps to be able to pass him over when the screaming becomes too much. It also helps to be hugged while your trying to cuddle a screaming octopus who has more strength than a bear and is capable of taking out large chunks of your face with his razor sharp claws. Last night was bad, and after several bad nights in a row (bad night = waking every hour if not more) I got hubby to come in.

Unfortunately a lot of reflux is a waiting game. Things apparently do get better as they get older. But in the same there are children who still need to be medicated when they are three and four years of age, and even older… At the moment we are trying to work out what it is that causes his reflux to flare up. Heat, teething, dairy and certain acidic foods are the most common. So it doesn’t help that we are in a heat wave, most days reaching above 42*c here, or that he is teething, or that he is having solids. Introducing solids is a minefield as you never know what will cause the flare up until you’re up all night holding a screaming child. Once the wrong foods are introduced, it can be a while before they leave their system. It’s Russian Roulette with me pulling the trigger but my little man in the firing line. Last week was worse than terrible so we withdrew all food back to basics – cereal and root vegetables… And slowly started reintroducing things again. The other night we gave him apple and we paid for it all night and all the next day. I think I managed four hours of sleep in total. When I got my daughter up that morning she gave me a hug and said, “Bad night mummy.” Her compassion astounds me. She showered me in cuddles and kisses all morning, even reminding me to get Little Man’s medicine (She stood at the fridge where his medicine is kept and said, “(Little Man) sick. Medicine.” She knows the morning/evening drill).

Two nights ago I was quite upset so I took a risk and did what the psychiatrist said to do. I asked for help. Since moving I joined a private FB group for Canberra mums which also accepts mums from nearby towns. I posted on the wall and was overwhelmed with their kind responses. One mum asked me to join a Canberra Mum Silent Reflux Support FB group. Fantastic. These are mums who a going through/been through what I’m going through. I’ve finally found mums who have it as bad as us. Mums who get the difference between a baby who has reflux and a baby who has reflux disease. Yes, there is a difference. Please read this link to find out what the difference is. These mums, total strangers, have already offered practical advice on food, offered to come visit me in Yass, to come to doctors with me, have play dates for my daughter and let me call them anytime. I am amazed at their kindness. Total strangers are willing to do so much for us. A mum in the group sees the pediatrician we’re about to see in Canberra and has confirmed she’s good. So things are looking up. We emailed our pediatrician in Sydney while we wait to see the one in Canberra and he has changed the medication our little man is on because we’ve been on the maximum dose and not seeing improvement.

What has astounded me through this whole journey is that we’ve had to find out most things ourselves. There wasn’t any ‘reflux info’ pamphlet explaining what silent reflux is, or how we need to be careful about certain foods, or hot weather, or that immunisations can cause flare ups. My goodness, up until a few weeks ago I wasn’t even aware reflux could ‘flare’ up. I just thought it was a stomach acid problem. Now I’m not stupid and I have some solid research degrees under my belt, so I know how to research. It would be nice if medical professionals were a little more proactive in their care. Telling you about the diagnosis rather than just giving the diagnosis. Give you ideas on how to manage things, warn you about things that could make it worse… I feel we’ve really been let down by the medical profession in our journey. I’ve never had much to do with the medical profession before. My family are very fit and healthy, so there hasn’t been a need. I hope our experience has been an exception and we’ve just had a horrible experience, because I’d hate to think our journey will be this unsupportive or unhelpful next time we need the medical profession.

If you know someone with a reflux baby, check out this link on ways you can help. It is terribly lonely and you feel like a broken record because things don’t get better. I’m guessing why that’s why friends stopped calling, because you would assume six months on things would be better. That and everyone is so busy.

Written by Nadia

1 Comment

Jo

Hi Nadia,

This is Jo from RISA. Your link to our site came up on the back end of the website and I just thought I’d touch base. I see you’re in Yass?? I don’t know how you feel about a drive to Sydney to see a paediatric gastroenterologist but it might be worth your while given it doesn’t sound like its going away any time soon. My personal email is below so please feel free to email me and I can pass on some details. I don’t know if you’re a RISA member but it might be worth considering given the circumstances too. I know there is a visiting paed gastro into Canberra but its a very long wait and very hard to get into.

Hope you are ok. I really do understand how hard it is. My story is here: http://www.reflux.org.au/jos-story/

Jo

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