Headfuck

Neurologists and “not-seizures”.

by Veronica on October 27, 2012

in Evelyn, Headfuck

I had a witty title for this post in my head last night as I fell asleep. Obviously it slipped out somewhere between my dreams of Evie twitching and my dreams of researching ever-weirder syndromes on the Internet. I think it’s a little exhausting that I continue to try and work out what is wrong with my baby, despite being fast asleep. Also, I’m pretty sure Wikipedia doesn’t normally have purple elephants and unicorns with sparkles.

We saw Evie’s Neurologist yesterday for the first time. They’d squeezed us in – creating an entirely new appointment at the end of the day, and Nathan and I sat in the waiting room while the receptionists clocked off for the night and a lone cleaner roamed the halls of the Paediatric Outpatient unit.

The Neurologist took a full history, watched videos of Evelyn twitching, referred to her EEG that he’d read earlier and told us that he’s pretty sure that these aren’t seizures that she is having.

What are they? No one knows. But they’re “not-seizures” and I spent an awful lot of time last night watching her “not-seize” while she slept.

On the upside, the Neuro seemed like a doctor who loves a good medical mystery. On the downside, that medical mystery is my tiny 13 week old baby, and we’re no closer to knowing what is wrong with her.

Her muscle tone is low and “concerning”. Her lack of any limb control, the same. She’s not hitting any milestones and we’ve just got to do the dreaded “wait and see”.

He spoke briefly of the possibility of a movement disorder, but again, we won’t know anything until she gets older and misses more milestones (or catches up – whatever the case may be).

Evelyn is an interesting case, and unfortunately, that’s not something you ever want your baby to be. Medically interesting is not a good thing, sadly.

Her feeding is starting to suffer as well, she’s having trouble staying latched as she sucks and her weight gain is slowing down. I’ll discuss that with her clinic nurse and with her Paediatrician when we see them next.

I just don’t know what is up with this baby of mine. They don’t think that she’s having seizures, but they don’t know what her weird movements are.

And horribly, they probably want to do another lumbar puncture. Her doctors will ring around the pathology labs to see if certain tests have been done, and/or if there is more spinal fluid of Evie’s available for testing – but there’s some tests that the Neurologist would like run, including gene testing, and that will involve another lumbar puncture.

I can’t even tell you how sick that makes me feel. One lumbar puncture is bad, two is fucking awful – but three?

Sick.

So, that’s that. In the meantime, I try and feed her as much as possible, and we wait for her to do something that will point us all in the right direction.

 

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Red and yellow paint, and stolen seedlings.

by Veronica on October 18, 2012

in Evelyn, Headfuck

Today I painted our kitchen cupboards.

Tomorrow I will do a final coat, before I paint the trim red.

The lady at K&D yesterday looked at me a touch strangely as I bought red and yellow paint together, remarking to Nathan “but it’s what she wants and what she wants, she gets!” She was joking, but I didn’t feel like explaining that my choice of new paint was steered by colours my baby daughter is likely to be able to see. That rather than painting the kitchen black and white, I was going for red and yellow. High contrast colours, you know? And if Evie’s sight improves, well then, at least I’ll have a bright and cheery kitchen.

Mock me all you like, but I’m rather a fan of the yellow at the moment.

This morning I discovered that one of my children had drowned the new seedlings that I was trying to start in the greenhouse, and that rats (I think) had stolen the seeds and seedlings out of some pots and grow bags. It seemed like a particularly cruel thing, especially as I’d already had to replant everything twice after the chooks got in and ate them the first time. Nathan fixed the door after the chook debacle, and yet, here we are again, seedling-less.

I’m tempted to lock a cat in the greenhouse over night and just deal with them plotting my demise. I mean, I’m pretty sure the tom-cat is plotting my death anyway, locking him up for a night can’t make him any more likely to kill me, right? Plus, this is why we have cats, so that they can do their jobs and de-rodent our paddock.

Aside from that, everything continues on as normal. Evie is still seizing, sleeping all day and not hitting any milestones or seeing very much.

How are you Internet? Have I missed anything major in your life?

 

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The baby is asleep, again (still) and my grandmother continues to be dead. Yay, reality.

by Veronica on October 7, 2012

in Evelyn, Grief, Headfuck

My grandmother is dead.

Pffft, I hear you say. You know this already, and sing a different tune already. She’s been dead for over three years now in fact, surely I ought to have gotten over it?

But no. My grandmother is dead and I want to rail at the Universe, because she should be here. She should be here, because selfishly, I need her help with my smallest daughter and instead, she is dead. Every time I update my parents and Nathan’s parents after an appointment for Evelyn, I miss her. Every time I have to venture back into the hospital, I think of her. Every time the days seem long and shitty, I want to be able to phone her and shout about the fact that my baby is still sleeping, still seizing and nothing is getting better.

Instead, she is dead and I am trying very hard not to kick the universe for this fact.

About a month after she died, I lay in bed having what felt like a panic attack. I was done. I was so ready to be done with grief, to be done with the crapshoot of missing someone that badly, I was just done. I wanted my do-over. Door #2 please, I’ll take that one instead. No, cancer, you can get fucked, we’re picking a different path this time. Someone go back and pick me a new ending.

The thought of having to miss her every single day for forever was just too much – the finality of it all was just shit, as the future stretched out in front of me – a future that was never going to have her in it, no matter what I went on and did with my life.

It feels a bit like that with Evie now. I am ready to be done with the seizures now please. Ready to have my daughter magically fixed, by karma or whatever. Ready to wake up from this nightmare and have Evie’s eyes work perfectly and to be living the life I was obviously meant to have, before someone got confused and pressed the wrong button.

The future of this is all stretched out in front of me and I don’t want to think about having to cope for another day with a baby who cannot see, and who has seizures and who is confusing the doctors at an alarming rate.

But this isn’t a nightmare. This is my reality. The reality is that the baby seizes a lot. That yesterday and today she wasn’t even able to see high contrast toys, let alone our faces. That sitting on the couch with her, her eyes rolled around and flicked everywhere as she listened to my voice and she smiled when I kissed her cheeks – but didn’t, couldn’t, see me. That she sleeps all the time, spending only a tiny amount of time awake before needing to be put back to sleep.

It feels like someone ought to come out shouting that I’ve been on candid camera, and that this is all a giant cosmic joke.

Instead, the baby is asleep again (still) and my grandmother continues to be dead. Yay, reality.

 

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Delayed Visual Maturation and a series of my grumbles.

by Veronica on October 5, 2012

in Evelyn, Headfuck, Seizures

Yesterday Evelyn was diagnosed with Delayed Visual Maturation, before we were waved goodbye without any further information given, other than “sometimes, some babies can just take a while to develop vision”. No information pack, no suggestions for early intervention, nothing. Just, here, your baby has vision problems and we hope that they will have fixed themselves by the time she’s six months old.

I was a bit frustrated.

Obviously I’ll discuss this with Evelyn’s Paediatrician when we see him next week, but in the interim, I was left to Google to find out what exactly DVM is, and what, exactly, I am meant to do now.

Doctors wonder why patients Google things avidly – it might be because in situations like this, the Internet has a little bit more information than anything we were given by a medical professional.

Like, did you know, DMV can also be known as Cortical Visual Impairment (which doesn’t go away)? That in a lot of cases, DVM is considered something that has gone away by 6 months or so of age, unless your child also has other neurological things going on? Like, say, some form of seizure disorder? Or maybe DVM doesn’t actually magically rectify, maybe babies just get better at using their eyes with the limits they have. It depends on which sites you read and whether those sites ACTUALLY work with babies who can’t see properly.

Needless to say, when a diagnosis doesn’t even have it’s own Wiki page, I’m a little hesitant about it being a “real” diagnosis, rather than just one of those things that they tell parents, in order to shut them up, while they hope madly that age and the plasticity of a baby’s brain fixes any problem before anyone gets too stressed.

Of course, I am way too well researched for my own good, especially now, when it comes to Evelyn’s issues. Like, you know, the fact that my baby is having dozens of seizures a day and apparently isn’t developing her vision properly.

You know, that kind of thing.

Not that I’m bitter.

[I’m totally bitter.]

From what I can gather, DVM along with a seizure disorder will probably mean that Evelyn will have some sort of visual processing problem for a while yet, probably her entire life. And yet, no one wants to talk about this kind of thing, because they don’t like that her EEGs were normal and consider her seizures to be “not-seizures” or “benign seizures” or “we have NFI seizures” that are “probably not causing any damage” only NOW, my baby obviously cannot SEE properly, so can we cut the crap with any kind of “may not be causing any damage” and just treat things?

Which is what I think our Paediatrician will do when we tell him what the opthamologists say about Evie’s eyes. He’s a good Paed, even if I am frustrated right now, and he is doing the best for Evelyn, balancing her age against the side effects of doing nothing (and let’s be clear, her eyes have been problematic since the seizures started, so it’s not something we could have prevented) versus the outcome of giving a small baby addictive, side effect-y drugs.

Rock, meet hard place.

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On visual development, or a lack thereof. And seizures. Still with the seizures.

by Veronica on October 1, 2012

in Evelyn, Headfuck, Seizures

In the mail on Friday we received an appointment to see the consultant opthamologist at the hospital later this week. Admittedly, this was well timed, as we’re getting increasingly concerned about Evie’s vision, but also slightly strange, because as far as we knew, her eyes were structurally fine and our Paed team hadn’t requested for us to have her eyes checked again.

I rang them, and the registrar who had originally seen Evie wanted his boss to check her over as well. Which, great – only, is he doing this to cover his own arse? Or did he maybe see something and not want to sign off on it himself?

We’ll probably never know. In any case, it works in our favour and Evie is being seen by the head of opthamology this week, when we’ll dump all our issues on their lap. Evie’s vision is sporadic, at best. We don’t know if the seizures are interfering with her visual processing, or if there is something else going on that is causing the seizures and visual problems hand in hand.

We were pretty sure that her eyes were structurally fine, but I guess we can’t be 100% certain if the registrar himself isn’t.

She’s still not interested in our faces, and while she smiles occasionally, it’s at our voices. She can track and follow – sort of – her eye movements are incredibly jerky (I think that’s age normal though), but it’s like she’s looking 6 inches above our heads or to the side in order to “see” us. There is never any eye contact, and she only appears to have peripheral vision. And the standard things, like she doesn’t blink at things moving near her face, not even when Isaac nearly poked her in the eye, or when I click my fingers at her eyes.

If we add that to her sporadic blink reflexes (she can’t seem to concentrate on both seeing and sucking, so if you give her a dummy to suck, she rarely blinks at lights shone at her eyes) and her complete lack of interest in anything visually, then I think we’ve got some big issues going on here.

I guess the main questions are going to be: How visually impaired is our baby currently? Is it treatable? Reversible? What is causing it? Will she grow out of it?

I predict that the answers to all of these questions will be “We don’t know” and “We’ll have to wait and see.”

Heh. I just have so much faith in the system, don’t I?

She’s having seizures as I type this, in her pram next to me. Yesterday was a bad day for them – she went all morning without any and inside I was cheering, and then she seized pretty constantly all afternoon. Twitching and eye rolling and unresponsive. She’d come out of them long enough to scrunch herself up and grumble about it, before slipping into more. At 11pm last night she finally stopped long enough for us all to fall asleep, before waking up at 2am and starting the process again.

Eventually I gave up on sleeping and just sat up and held her until they eased around 5.30am.

It wasn’t my idea of fun, nor was she happy about events.

Through all this, I am thankful for your support. Yes, YOU. For everyone who has reached out to say that this sucks, that they’re thinking of us, that they’re holding Evie in their thoughts and prayers. It’s saving my sanity and I need you to know that.

So, thank you.

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