Hoping for the worst

On Monday I hope to get test results that tell me there is something wrong with my daughter, Jane.  That wasn’t a typo. I don’t want to hear that there’s nothing wrong. I want to know what the problem is. Most people who hear she is having a gastroscopy say “Oh you poor things. Don’t worry – I’m sure they won’t find anything!” It is difficult to explain why this is such an appalling prospect, without ranting for hours and beginning to foam at the mouth. (You have been warned.)

You see, I know there is something wrong. It has taken me most of her 3.5 years of life to persuade various members of the medical profession that something needs to be done. She is not underweight, although she’s far from porky. She has fallen from the 90th growth percentile to the 50th, but that’s not particularly alarming (unless you look around at her parents and sister, all of whom tend to make giraffes look a little runty). She is a picky eater, but that can be said of many 3 years olds.

Recently she has developed into a tanty monster of extreme proportions, coinciding with significant sleep problems. Again, this isn’t terribly unusual when you’re 3, and her sleep has always been appalling. She is dairy, citrus, tomato and wheat intolerant, and suffers from silent reflux, but since she is not horribly malnourished, the standard position on that seems to be “she’ll grow out of it”.

Really, there are no obvious, objective signs, like massive green spots on her forehead, that I can point to and say “Look! You can see the problem.” Nonetheless, there is a problem, and I am so tired of tramping from gp to specialist, gp to different specialist, etc ad nauseam, without finding anyone who will take it seriously. It took us until she was 2 to get her reflux diagnosed in the first place. In the end we got desperate, gave her half of an antacid tablet and had the best night’s sleep we’d had since she started on solids. (Never mind the ensuing panic when I realised that those tablets are not for the under 6s!) Then we went back to the gp who put her on reflux medication, and things improved. But they were still very patchy. Better, but still not good.

Apart from the sleep deprivation, the worst part was that Jane’s normally sunny, laid-back personality became ever more clingy and withdrawn. It was heartbreaking to see. In those rare times when the reflux meds were really helping, she was a different child – happy, outgoing and relaxed. When the reflux gets the better of her, which is most of the time, she is miserable, frustrated, distressed, and incredibly shy and clingy.

I am stubborn, highly educated and medically savvy, and I have battled to get answers for our family. How many families are suffering because they can’t get doctors to take them seriously when they say there is something wrong? If I had believed every doctor who said “it’s behavioural” or “there’s not a problem” or “she’ll grow out of it”, I shudder to think what hell we’d be occupying today. Here’s the thing. I know my child. Don’t tell me I am imagining it, or it’s just a phase, or any other patronising platitude.

Recently, we were very lucky. Jane’s reflux got worse. She had a mild gastro, and then suddenly her vomit contained “coffee grounds”. I’ve no idea how I knew that this meant there was blood in her stomach and needed to be taken seriously – presumably I had read it somewhere during my endless researching of reflux.  Regardless of how I knew, it’s very lucky that I did, because although she was diagnosed with gastritis and a short term increase in her reflux medication fixed that problem, it meant that we now had medical proof that something was not right in her digestive system. And we had it in writing, in the form of a report from the hospital emergency department.

Finally people started taking us seriously, culminating in this appointment for a gastroscopy on Monday. There is a long list of things they are looking for, and they are all treatable. I don’t care which one they find, I just want an answer, and a way out of the misery and sleep deprivation of having a chronically ill child. I want her sunny nature to be able to flower unchecked. I want her to be able to sleep peacefully, eat healthily, and have an easier life. Naturally I want all that for the rest of us, too! So I am hoping for the worst. Cross your fingers for us!

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3 thoughts on “Hoping for the worst

  1. Shelley Duggan

    Oh I wish you guys nothing but the best of answers, and speediest of “fixes”.

    I have my own little dislike of gp’s…stemming back many years, but highlighted when I took boyo to the gp last year with croup.

    Having been told the day before that it was a virus and to give him a few days (and that stage there was no obvious croup sign).
    Then in the afternoon I called Mum and told her boyo had croup and made the next appointment I could..the next day.
    I sat down in that appointment and responded to the “What can I do for you today?” with “I’m almost certain Benjamin has croup”
    The Dr’s response was “Well he’s still smiling and seems happy enough, so he’s not a really sick child”

    2 hours later, knowing that his 41 degree temp, and barking cough, and stridor were all symptoms of croup, I took him to the emergency department…20 minutes later we left, with medication and a diagnosis of croup…..

    GGGGRRRRRRR!

  2. TMac

    Fingers crossed you finally get some answers. The journey is such a pain in the ass and a scary one.

    Hope all goes well with the gastroscopy!!

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