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Medicine - A Job in Itself

Medicine - A Job in Itself

It is a subject that I find gives such a varied range of experiences and responses and it just shows what a complex and individual issue it can be.

Recently, medicine has crept its way to the top of our, "list of concerns".

Every time we start a new medication I begin with trepidation, monitoring each and every one of my daughters sounds, movements, habits and behaviours.

I spend so much time trying to read her and agonising over whether or not we are making the right decision in pursuing certain medications.

"This medicine was the worst thing ever for my child... it hospitalised him" to "this was the miracle medication for us... she is so much more comfortable, less irritable, I wish we had heard of it sooner"... two different responses to the same medication.

You can see why our heads are spinning.

It's a huge responsibility for a parent to monitor and make decisions on medicines.

Especially if those medicines affect brain function, movement and so on.

For parents of non-verbal children, or children with communication challenges, it isn't a game of cause and effect or being able to ask if the child is feeling okay.

Amy generally communicates with various sounds and I'd like to think I am good at translating whether she is happy, or not happy.

The problem I find is that when she isn't happy she has no way of telling me why.

The most disheartening for us is when we start a new medication and build up too much hope only for either nothing to change, or for things to somehow get worse.

I don't like relying on medicines but it seems inevitable for us.

I know from personal experience that starting any medication can have many different side effects.

I am on my third different type of tablets to help with my anxiety.

The first one caused me insomnia, headaches and bruxism (tooth grinding/jaw clenching).

The second one caused me to feel detached and emotionless, but also caused nightmares and night sweats.

So how do we know that one of Amy's many medicines isn't causing her a banging headache or any other symptom?

You see she recently started a medicine to help ease her athetoid (involuntary) movements.

We have noticed that during the day she seems to have better control of her arms and therefore improved gross motor skills.

We are increasing the dose incrementally each week until we reach the top dose for her weight.

The downside?

She has stopped sleeping.

And by stopped sleeping I am talking full on all-nighters!

We thought she had sleep issues before but they look like a dream compared to what we have encountered in the last couple of weeks!

The solution to this insomnia?

You guessed it.

Another medicine to counteract the negative side effects of the first!

So valium/diazepam is back on our list.

We've had this before with a medicine that was prescribed to stop her being sick... but because it was a pro-kinetic she wasn't stopping her "explosions".

So, we were of course given a medicine to "constipate" her.

I spend my days obsessing over every nappy, how much food she has had and what calories she has taken in.

My mind is now at rest on this subject however I do worry about the long-term effects of anti-reflux medication.

Every day we draw up a minimum of 15 syringes of medicine a long with flushes for each set.

I've seen people struggle on less, and I've seen people wish they only had to draw up 15 a day.

In itself I feel medicine for our children could be at least a part time job... the ordering of prescriptions, the collections, the checking stock levels for syringes/feeding supplies, finding somewhere to store it all, and my least favourite?

Making sure the labels are correct!

The labels for respite and nursery need to state correct doses and legibly display the child's details.

I've had so many days where I've been asking the paediatrician to urgently fax our GP to then contact the pharmacy to make them aware of a new dose and if this doesn't get done it would affect Amy being able to attend an overnight at respite.

The struggle is real!

I had this exact problem a couple of days ago and I became so exasperated that after various phone calls to different people I burst out crying... it was at this point that someone said "leave it with me".

The four words that can mean either "I promise I will fix this"... OR "I will leave you waiting an eternity, not return calls and leave you in the lurch getting more and more angry and frustrated".

Luckily for me, I was helped - this time!

I know a few parents who have taken a more homeopathic or herbal approach to their child's health with some success.

I marvel at them as I find myself having a mistrust in these things as they can cost a lot to try the different techniques and only provide limited success.

I wonder should I be spending more time researching alternatives to medicine but then become overwhelmed at the wealth of information out there, and I am conscious that this time is probably better spent doing her daily physio or SALT work.

To people not part of our cerebral palsy world... when they see which medications Amy is on they are staggered.

How can such a small person require such a huge intake of drugs?

I explain each one and why she has it, and I can see the person understand... yep... that makes sense... muscle relaxants, help with neuro irritability, help with reflux, and so on.

It has become so much part of our life that it is normal, but I know to an outsider how alarming it must look, I often joke that our kitchen alone could open up as a pharmacy to all.

Creams for granulation, inhalers, tins, tubs, bottles - it really is next level.

When you take into consideration the multi-faceted nature of special needs parenting, it is incredible how much we can achieve with our time.

This month alone has been so incredibly busy with equipment: sourcing a safer bed for Amy, wheelchair services, new school chair, standing frame adjustments, sleep system gear and new additions to it, and so on.

Regardless of your stance on medication, I know in my heart that I am doing my absolute best for Amy with limited experience and on an empty tank.

We are all doing our best for our children and even though sometimes you beat yourself up and second guess yourself, you know that one day you will get the balance and hopefully have them as settled and comfortable as possible.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Ceri-Ann

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!) I like to blog, read, play video games and listen to rock music. I have a huge love of coffee, animals, and nice days out with the people who matter.

View Ceri-Ann’s Profile

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