I didn’t know that…

There’s a lot of things that I didn’t know before Evie was born. I thought that I was well educated and open minded.

It turns out that I didn’t know a lot things, the really important things in the grand scheme of life. And actually I wasn’t that open-minded, well only when it suited me.

I’ve learnt a lot of things, terminology, about medical conditions, people’s views…the good and the downright awful, who my friends and family are (otherwise known as who gives a shit), about the education system, more about the blooming marvellous NHS and how an extra chromosome which you never knew you wanted, turns out to the best thing that could ever happen.

What has really surprised me more than Down’s syndrome or her sensory processing disorder is how affected by her thyroid Evie is.

Who would have thought that a tiny thyroid could create so many problems?

For months I had been saying that Evie wasn’t quite herself. Her skin was a bit dry and she was lethargic all of the time. I put it down to her possibly having eczema like me and her usual non-sleeping issues having an impact. But actually what it turned out to be was an underactive thyroid.

People with DS are said to have issues with their thyroid more commonly than those without their additional chromosome. For me I often wonder if it’s because it’s actually tested for more regularly as its known to be a common complaint associated with DS.

I mean come on, would you know that anxiety, dry skin, constipation, weight gain and lethargy are all symptoms of an underactive thyroid? Because I didn’t. I knew about weight gain being affected by glands and that is as far as my awesome knowledge went.

When Evie’s thyroid was picked up as an issue at her annual paediatric review she was placed on a low dose of levothyroxine. Levothyroxine the bane of our lives…she hates it. Morning battles ensue as it tastes pretty grim. We have a board in her room so she knows she has to take it as soon as she gets up yet we still battle πŸ™ˆ

A few weeks into her medication and Evie was suffering some unpleasant side effects..the worst one being night sweats. She would wake and her hair would be wringing wet. To the extent that I would bathe her and wash her hair.

As time went on Evie became incredibly anxious, she panicked wherever we went, even to places that she knew and loved. Her skin on her feet was scaly…she seemed to becoming very stocky and broad; coupled with her being incredibly lethargic.

I ‘knew’ something was awry. I couldn’t explain why…it was a general feeling that she was unwell. Our fab GP rushed her bloods through and the day after having them taken rang to tell us that her thyroid was being severely under treated. Her dosage was upped and then again a few weeks later.

And the difference? Wow…her anxiety is the biggest change. It is such a difference. Evie became frightened to go to friend’s houses, she would run to the loo and not come out. Now she’s back to being Evie again. She still gets afraid sometimes but the high level of anxiety has gone. Anxiety in children is awful and in one who can’t fully express herself, even worse.

This brings me onto another issue…blood tests. Eurgh. Evie is soooo strong. She goes to a fab clinic where they try to take her blood. She has inherited her crappy veins from me (lucky girl!) so it can quite be literally like getting blood from a stone, a stone who fights and panics…and who also will use every evasion technique at her fingertips. Think chattering and pulling your arm away at the same time…distracting nurses with sweet smiles and 10860690 questions.

It’s so hard to get the blood but so terribly important. And when she had given her blood…I do so love how she says that she has a poorly flumb 😍 (thumb to you!).

I seem to have slowly become an expert in so many subjects…taken courses in Makaton and SEN law…researched SPD and Down’s syndrome, researched the best way for Evie to learn; the best tools to help her; places that she’ll cope with.

I really should update my CV! Anyone has a job for a stay at home research queen?! 😁


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