Recently I can’t seem to stop thinking about medicine.
So much so that my entire google search history seems to be related to medications.
You can hardly blame me though. Currently each day we draw up anything between 16+ syringes of various medicines each day for Amy.
My thoughts mainly centre around “is this medicine even helping her?”,
“what if it’s giving her a headache and she can’t tell me and that’s why she cries so much?”,
“what are the long-term effects of taking this medicine”
“I wonder how I would feel if I took all of these meds? Surely I’d be on the floor unable to move?!” and so on.
The main revelation for me on this journey is how much trial and error there will be.
There will be a lot of tweaking doses and optimising different times of administering to achieve the best effects.
It doesn’t feel like an exact science… I’m not a doctor, I’m not a scientist… I’m just a sleep deprived 30-something bumbling confusedly about my life in this strange role of mum/carer.
It shocks me how entrusted I am to make such big decisions about my daughter’s medicines.
Obviously, it is all regulated and monitored by trained consultants and paediatricians; yet at the same time they have deemed me competent enough to know whether or not something is working.
This would all be a whole lot easier if Amy could tell me herself how she felt.
You see in the last few months Amy got an epilepsy diagnosis.
Her seizures seem to present themselves in all kind of surprising and terrifying ways, enough to leave me a constant nervous wreck in fact.
It hasn’t happened often by any means, but that’s part of the fear… is the not knowing when.
There is no pattern, no specific trigger (that I know of) or time. The last big one she had caused a dangerously high heart rate and low blood oxygen and requiring medical oxygen.
The outcome of that hospital admission was to increase her epilim/sodium valproate.
You say epilim to someone that has heard of it and they will have an opinion.
I have learned this. The other thing I learned… and I have learned this more times than I care to admit… always unclamp the extension before forcing meds in… because ranitidine will sting your eyes!
Recently a cashier in a supermarket told me she had epilepsy and wanted to know which meds Amy has.
When I said epilim she recoiled in horror and warned ominously “GET HER OFF THAT MEDICINE. Epilim is evil!!!”.
To which I responded by assuring her that each medicine is different for each person and what works for one may have drastic nasty side effects for another.
Other people have told me how it was their miracle drug and how it has massively improved the mood of their child.
The quandary I am in is that since her dose was increased to the maximum amount – she has been inconsolable.
Inconsolable to the extent that I was urged by both respite and school to have her checked over in hospital for no underlying medical issues.
Urine samples taken, blood taken, ears and mouth checked, the usual anger inducing poking and prodding.
Infection markers were fine, she was the vision of health; and yet something is causing her deep, unexplainable agitation.
Diazepam has now been increased and an extra dose added to try and counteract the negative side effects of the epilim but I am seeing no change.
I remain disillusioned by the complex world of medicine.
Amy takes gabapentin to help with irritability and is also on various anti reflux and muscle relaxants.
I sometimes wonder how she would be if we weaned her off the lot (except seizure meds!).
I wonder if we continue the epilim like this for another 4 months to see if things improve.
Or do I insist on weaning her off it and starting a new one that could be potentially 100s of times worse?
It is quite literally enough to keep me up at night.
It is also a full-time job.
Ordering syringes, cleaning them, ordering meds, drawing up the meds, checking labels are correct for school and respite, packing correct ones for days out, monitoring expiry dates and so on.
Our house looks like a badly run pharmacy sometimes.
On tube feed supply delivery days, we become awash in a sea of flexitainer and giving set boxes.
Spare tubes, extension sets, boxes of meds, everywhere.
It is astounding to see the sheer volume of things one little 17kg person can require.
I turn to online forums a lot for support.
As we all know – there is no greater expert than the special needs parent who has walked this path before you and has their own first-hand experience of a medication.
The varying responses you see about different medicines and diagnoses is staggering.
You seem only to be able to gather advice about other things to try but continue to go it alone just you and your partner trying to work out what to do.
I once read something about tube feeding being artificially fed.
I then feel this overwhelming gratitude that this technology exists because otherwise there is no way she could receive sustenance and medicines.
It also makes me panic at how vulnerable she is and how awful it would be if a long-term effect of a drug damaged any of her organs.
Because of existing liver issues, Amy needs blood tests regularly now that she has epilim because it can affect liver function.
The thought of something that is helping keep her alive and well damaging her and causing her to need further intervention is enough to literally keep me up at night.
It is then that I turn to my own meds – the anti-anxiety and anti-depressants, the need for counselling, the reading up on mindfulness, the trying to get new hobbies, the trying to enrich my life and distract myself from the world of medicine that thus surrounds me.
Each hospitalisation and check over is a reminder of what we have been through.
It is a trigger for PTSD. It is the same building her life started so dramatically.
Each failed attempt to get a blood sample is a reminder of the many cannulas her little body has had to accommodate.
Each sats probe is a reminder of her need for ventilation, oxygen, resuscitation at birth.
It is one big mental battle and often a vicious circle.
These miracle chemicals are our life now whether we want them to be or not.
I am grateful for them.
I resent them.
Each outpatient appointment is time I thought we would have spent at the park in a different life.
4 years in and I am still adjusting to our new normal.
It would be easier to adjust if she weren’t so distressed all day.
This week is the last one before the summer holidays for me.
I am excited for our time together.
But I am worried about how I will get all of the essential jobs done whilst she is there in her current unpredictable and sad state.
Not being able to calm her is most definitely the most difficult challenge for me in all of this.
She has always been quite determined and bossy, I think it’s part of her personality and also frustration at not being able to communicate her needs to me.
But right now, it feels more medicine based and unstoppable.
I hope to write a post again in a few months’ time where I explain my relief at how we are out of the woods with this new medication.
There was talk in our last neurology appointment of using chloral when she is distressed.
The last thing I want is to sedate her, but it becomes an ethical debate about quality of life.
If someone is that upset for a prolonged period of time is it not best they sleep it off for a while?
I don’t know.
I hope it doesn’t come to that.