Seizures make me cry. Since early May Matilda has developed seizures. In the scheme of things ‘seizure-ish’, Matilda’s would currently be considered very mild. Many families are dealing with way more than we are . But despite my best efforts to convince myself otherwise, seizures change everything – subtle shifts through to absolute fault lines.
Seizures mean that the small amount of freedom Matilda had won back over the past year has been eroded. We hang closer to her as she is less stable on her feet and ‘shadow’ her when she is with her friends in case she has a seizure.
Seizures mean that we have to fill our little girl with medication, that has three pages of side effects I wouldn’t wish on my worst enemy. Most of the time we don’t know what is impacting on things like her speech – is it the seizures, the medication, fatigue? And you know what, neither do the doctors.
Seizures mean that at times she is so tired she can hardly function and our plans for slightly longer times at school may hit rocky ground (or at least how she is at home afterwards). Pushing dinner times out a little later or socialising with friends in the evening is becoming harder not easier (on the bad days).
Seizures mean that normal 10 year old girl activities need to be strategically managed – sleep overs, play dates and parties. Shorter, with mum doing the emergency medication talk or hovering in the background, leaving before all the others, only with one friend – never quite free.
Seizures mean lots more doctors appointments and not necessarily more solutions. We try to arrange ways that Matilda doesn’t hear the chat or discussion over outcomes/side effects/recent deterioration but there are times that this is hard to avoid.
Seizures mean that Matilda has mentioned hating her body or being broken more often. She is tough and this only happens when she is at her absolute low-battery setting but on top of normal early-puberty issues, it strangles my heart.
Seizures mean that her 12 year old brother Reuben knows all about what to do in an emergency situation and that we have a sign on the fridge for what to say when you call for an ambulance.
Seizures mean that we check how far it is to the nearest hospital and if they have a 24 emergency department before we go away. Our car recovery policy will get upgraded too in the event of a breakdown!
Seizures mean more talks with the teachers at her school and kids in her class. They have all proven that the more they know, the more supportive that can be.
Seizures mean that I have no way to forget the horrible night when she was first ill and a seizure almost took her. I think often, almost daily of the doctor at her head, keeping her airways open, telling me to keep talking to her, that she could hear me, as she shook on the bed. My tendency to overprotect her has gone through the roof and I am constantly fighting my inner urge to check on her, hold her hand, not let her go too far…….
BUT seizures mean we are still here. We are still in the game and prepared to do what ever it takes. This may be a temporary reality or for the rest of our lives. There are chances that it could become significantly worse or possibly better. Either way as a family and as a community we will roll with it, breath into it. Sadness and despair tap on my door. My yoga teacher read a beautiful quote from the poet/writer David Whyte from Consolations (link here)
Despair turns to depression and abstraction when we try to make it stay beyond its appointed season and start to shape our identity around its frozen disappointments. But despair can only stay beyond its appointed time through the forced artificiality of created distance, by abstracting ourselves from bodily feeling, by trapping ourselves in the disappointed mind, by convincing ourselves that the seasons have stopped and can never turn again, and perhaps, most simply and importantly, by refusing to let the body breathe by its self, fully and deeply. Despair is kept alive by freezing our sense of time and the rhythms of time; when we no longer feel imprisoned by time, and when the season is allowed to turn, despair cannot survive.
Alternative, complementary or integrative medicine -to be honest I am not entirely sure if they are all the same thing or not. Different labels from different decades? Where I live we are very fond of such things whether it be chiropractic, osteopathy, kinesiology or a bit of a drumming circle to name a few. I have to lay my cards out and say that as a speech pathologist with a passion for research, I am a tad wary of some things that are on offer. However whilst I love a good bit of juicy research to assert that a treatment is both effective and efficacious, I can also admit that a lot of what I do clinically would fall more into ‘know-how’ or ‘clinical expertise’ or ‘that’s how my granny showed me.’ So with Matilda, my child who has an acquired brain injury following HSV encephalitis, the system has flogged itself to keep her alive but now seems a little lost. Conventional medicine feels slightly balanced between ‘we are managing her drugs’ and a shoulder shrug that insinuates ‘Huh sorry but ya kid has a brain injury and that’s just the way it is. Nothing more we can do here. Please step away from the counter.’. The problem here is that we don’t want to just sit back on our bums and wait to see what ‘natural recovery’ will bring us – something, not much or a fair bit? We want to be proactive in helping her be in the best position she can for learning and recovery. That may be boosting her immune system, feeding her brain food or doing more exercise, and this is where ‘not medicine’ medicine may really come into its own.
Professionally I have a little check list that I like parents to use if they embark on any intervention. It is particularly helpful if you are about to embark on a journey into the unknown…water, compass, bug spray, clean undies….Nicole’s Checklist!
1. DO NO HARM
I cannot stress this one enough and it is a little bit more complicated than it looks. To the best of your ability try to ensure that what you are going to try will not be physically or psychologically damaging.
Check that any supplements do not clash with medication e.g even simple food based supplements can clash with cardiac or seizure medication for example.
Over-intervention. I have worked with a few kids who have been to see a gazzillion therapists/practioners and they can be quite emotionally unsettled by it. All these people can really add to a picture of ‘something is really wrong with me.’ So choose wisely.
Fatigue. Matilda has already had a gutful of appointments and hates listening to the case history part. We now take head phones with music or a DVD and if she isn’t being directly spoken to she can ‘tune out’.
2. QUALIFICATIONS AND MATCH
Ask what the person’s qualifications are. There is a big difference between a 3 day course and 30 years clinical experience. Anybody who is avoidant of telling you about their training or experience may be best avoided!
Follow your gut instinct. Just because a mate has recommended someone, doesn’t mean that they are right for you. Listen to your inner-voice if it says NO (or YES).
3. DON’T BE A GUINEA PIG
In most situations it might be best to avoid someone who has no clinical experience with the age group or type of issue your are seeking help with. Comments like ‘I don’t normally work with kids but I am willing to have a go!’ should probably ring alarm bells.
However sometimes a practitioner may be very open about their lack of experience in your particular area but very up front about how they could manage that – ‘I speak with my mentor every week.’ ‘I have read 10 journal articles, been to 2 workshops and am in regular contact via Skype with the authors’. Being ‘open’ in this way allows you to make informed decisions.
Another great way of checking up how you feel about a practitioner is if they have testimonials from other clients or clients who have volunteered to talk with prospective clients. In my private practice I have a couple of parents that have volunteered to talk with parents considering seeing me. I have no part of these phone calls and I think that parents speaking with parents is a great way for them to weigh up the pros and cons.
4. TIME FRAMES AND EXPECTATIONS.
It may be important to double check a few things with the practitioner. Endless sessions may be expensive and not really show any clear change. Having a sense of exactly what to expect is important.
What exactly do you think we can expect to happen? How will we know if the treatment has worked or not?
How many sessions is it likely to take?
If I start taking a supplement or doing regime, how long will I need to continue? What happens when I stop?
What are the alternatives if it doesn’t work?
Sometimes in my practice I may say things like…’The research and my clinical experience says that usually children under 6 will reach the end of Stage 1 by 16 sessions. As Bobby is now 9 and also has a sensory processing disorder, this may take longer.’ So in some situations I cant actually say a definite program time but I can let a parent know what I do and don’t know, how we may have to vary from the norm or what we know from research. This lets them make an informed choice.
5. WRITE IT DOWN
It doesn’t matter what type of medical or intervention process you are embarking on, it is always a good idea to keep notes. These appointments can be bamboozling and they are there for your benefit. This is especially true of team meetings (mutli-disciplinary). It is soooo easy to forget to ask the crucial question you had or to later completely forget what they said!
write a list of things you want the practitioner to know (a parent/self report) and questions that you have.
before you leave, check that you have asked them. I once went into a multi-disciplinary meeting with just two important questions. Being tired and overwhelmed I failed to get my diary out of my bag and left without either question being asked or answered!
write down what they say. You think you won’t but you will forget!
don’t feel intimidated about going in prepared. Like I said all of these meetings are for your benefit.
Crochet through big scary meetings – scratch that! Unless your a yarn-nut like me who focuses better whilst armed with crochet!
6. FIND THE BEST YOU CAN
Within the bounds of reason, location and finances, try to find the most experienced person you can. The rarer the issue the more that this may be necessary. If you can find someone with a passion, special interest or clinical speciality in the area that you are seeking help with…kaboom you hit the jackpot.
7. MONITOR CHANGE
Recently Matilda started having crania-sacral session but unfortunately we also were adjusting the B6 she takes to mitigate the behavioural symptoms she has as side effects of the anti-seizure medication. The result of changing to things at once is that we don’t have a clear picture of what caused any changes to her behaviour.
Try to only alter one thing at a time to see if anything happens.
Watch out for small signs. These may seem quite unmeasurable like ‘We all feel happier.’ or ‘Getting ready for school felt like before we went to hospital.’ or more smiles. You may be able to ‘measure it – we haven’t had a meltdown for the past 4 days.
Keep a diary of any changes so that your practitioner can help you assess how it is going – as a aid before it is so easy to forget details once you are in a session.
So we are now looking a wide range of options for Matilda – yoga and breathing exercises, cranio-sacral/ connective tissue therapy, neuro-feedback, nutritional medicine. Some we will embrace and some won’t get off the floor. Sometimes we will have enough answers to feel confident and at other times we will be flying by the seat of our pants.
Its really hard to just accept ‘the shrug’. So we will seek ‘outside the box’ whilst swathed in a banner saying ‘Do no harm!’.
Night John-boy, night screeching Koala’s, night weird-sounding owl, night ya’ll.
I know this may sound very naive but I didn’t really think about what the medications Matilda is taking may actually be ‘doing’ to her until this weekend. I am full of respect for the hospital team that have been working with her and switched off a bit. Maybe it was just too much information to soak up. Maybe it was a numbers thing. We had reduced the dose and number of her medications quite a bit as we transitioned home from the hospital. So less equals ‘good’ or at least ‘everything’s oki doki’, right? The words ‘side effects’ however are now ringing in my ears and I have slightly weakened friendship with her meds!
Matilda is on an anti-seizure medication and a B6 supplement to mitigate the effects of the ‘side effects’ of the anti-seizure medication. As well as Melatonin to help with sleep.
Lesson #1 Repeatedly check that you are giving the right meds at the right dose.
One day I went to the chemist and bought the B6 supplement at a lower dose. I thought I had doubled it to match what we usually gave her. I also naively underestimated the impact this supplement had, thinking ‘Ah its just a vitamin.’ WRONG! We had about four weeks of daily meltdowns before I checked her dosage sheet and realised we were 50% down on her dose. Taking this back up coincided with a return to a less roller coaster life. I had made two mistakes here – one was not really understanding what the B6 was for and the other was thinking that I could hold all this information in my head without checking.
Lesson #2 Know the side effects of the medicine and monitor them.
I am now wondering if much of what I have felt was due to Matilda’s ‘acquired brain injury’ is in fact due to the side effects of her anti-seizure medication. She has a very high chance of having seizures if she is not on the medication but it comes a huge cost. The rages, otherwise know as ‘brain fireworks’ are scary and emotionally shake us all down. When I stuffed up her B6 we felt their full weight. Part of me feels as though I am poisoning her to keep her safe – not a great feeling as a parent.
Lesson #3 Really listen to your kids when they talk about changes to their bodies.
Matilda has real problems explaining pain. Is it pain, tingles, cramps? She will do things like scrunch up her hands because she can’t explain exactly what it feels like. A few weeks ago she started complaining of pain in her hands and feet. And after we increased her dose of B6 after a recent hospital review, she continued to complain but also said her eyes hurt. At this point I hit the internet and this set in chain a process of reviewing what she is taking, blood levels, possible toxicity etc.
They say it takes a village to raise a kid. I feel like it takes a big team of people and a gazllion trillion neurones to look after Matilda. There is no sitting back and letting it all happen. It’s all about the little details.
Whilst relying our medical team and their advice, we have also begun they journey of pondering alternative or complementary therapies. But thats a whole other post folks.