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You are the best advocate for your child

Advocating for your childWhat do you do when you know something is wrong with your child but nobody can tell you what it is? When every instinct of yours is screaming that there is more to this? What do you do?

My daughter Keira was five when she came down with was initially a very bad bought of gastro. She quickly recovered from this but not long after she began to complain regularly of feeling sick. This only got worse over time and in fact her symptoms worsened with lethargy, nausea, loose bowels, sweating and shaking rearing their heads.

We went to see doctor after doctor — all of whom were convinced that it was just a simple case of constipation. Constipation can be quite common in school-aged children as they don’t like to empty their bowels at school. The doctor gave Keira some laxatives and sent us on our way.

At first this diagnosis certainly seemed plausible but her symptoms never resolved. I went to several GPs and finally found one who agreed with my theory that there was more to this than just constipation. Although he did admit he didn’t know what the problem was he said that he would do his absolute best to help me find out.

As a parent, this was all I could ask for — someone who told me the truth and wanted to help.

Shortly after Keira was referred to a specialist. The specialist initially seemed sceptical about the severity of Keira’s symptoms and I believe felt that perhaps Keira was embellishing her illness to avoid school. He would often ask why it was that she was missing school? As well as asking repeatedly asking her questions about both school and friends.

I guess in hindsight these were all valid questions but upon listening to her symptoms, I hoped he would dismiss this. The fact was Keira loved school was a good student and had plenty of friends but due to her illness I was constantly getting calls to come and pick her up.

As was the case with previous doctors we had seen, he felt that it was just a simple case of constipation and gave us some new medication to help clear her out.

However, after a couple of weeks the symptoms only seemed to be getting worse. Keira would wake in the middle of the night and spend hours in the bathroom crying, shaking and often falling asleep on the toilet holding a bucket. Meanwhile I had been regularly corresponding with her specialist via email and when I told him of her worsening symptoms he suggest we come back to see him again.

By this time, I was spending my sleepless nights researching her symptoms trawling the internet looking at all kinds of medical research, blogs or anything that I thought might help. I had now formulated my own theory about why Keira was sick. I was very aware I was not medically trained so I discussed the plausibility of my theory with her GP, who felt that it was certainly possible.

Then I emailed her specialist and told him of my suspicions of a fructose or lactose intolerance and he said he did not agree. When we met again, he said that he wanted to put Keira under a general anaesthetic in order to perform a gastroscopy. In turn I asked him for a hydrogen breath test in order to rule out an intolerance. My suggestion was met with some resistance. Ultimately, she ended up having both tests and it turned out she did have a fructose intolerance among others.

The biggest lesson that I have learned on this journey to Keira’s diagnosis is that as a parent, you should always trust to your instincts.

If people around you don’t believe what you are saying, don’t stop pushing for a diagnosis, you are the best advocate for you child.

If something doesn’t seem right and your child isn’t getting better — then ask to see a specialist. If there is a long wait for the specialist — ask to be put on a waiting list.

You may come off as a neurotic parent but ultimately your child is counting on you, so don’t give up.

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