by ck on October 19, 2012

As someone prone to fear issues, there are a few biggies on my life list. 1) Earthquakes. 2) Fire. 3) My teeth falling out. 4) Something happening to my kids that I can’t control. Or stop. (Clearly my order is questionable, but I can’t control my fears, either.) Anyway, I bring up fears because one of my favorite bloggers, Veronica Foale from Someday We Will Sleep, who is all the way down in Tasmania, Australia has been sharing about the seizures her newborn daughter is experiencing. Seizures that may be connected with her daughters’s loss of sight. Seizures that doctors don’t understand.

I asked Veronica to share the story of 11 week-old Evelyn in hopes that someone reading this today may have experienced something similar, or know someone who has. If you have a few minutes this morning, please read her story and pass it along. Or, if you recognize what you read (or see), please contact Veronica via her website.

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Evelyn was born on the 28th of July, weighing 5lb, 2oz and around 4 weeks premature. Small, but strong, she spent time in Special Care for jaundice treatment. When she was 8 days old, the SCBU discharged her.  She was still jaundiced, but we travelled backwards and forwards for blood tests until her bilirubin levels began to drop.

After her chaotic beginning, I was looking forward to having her at home, without any more hospital visits, or heel pricks.

When Evelyn was four weeks old, I was holding her when she went limp and her eyes began to flick side to side rapidly, with deviations up and to the left, before they rolled back into her head entirely. She was unresponsive as I held her and waited for her to come out of it.

This was her first big awake seizure.

We spoke to her Clinic Health Nurse immediately (lucky timing really, she rang just after Evie finished seizing) who said to video as many as we could and then see our General Practitioner (GP – doctor) immediately for his opinion.

Once I started watching her, video camera in hand, I realised just how many seizures she was having. What I’d previously thought were intense baby dreams turned out to be seizure activity – small seizures happening in clusters that would last anywhere up to 40-90 minutes.

A few days later, after seeing our GP and waiting for him to discuss with the Paediatric team at the Royal Hobart Hospital, we were told to take Evelyn immediately into Emergency.

Once in hospital, she had blood drawn – so very much blood – and was moved up to a cot on the Paediatric ward, where she did very little but sleep and feed. Over the next few days, she had two EEG’s, an MRI, plenty more blood taken and an attempt at a lumbar puncture.

You know what’s worse than sticking needles into a five week old baby’s spine? Sticking needles in there and not getting the fluid you need. Evelyn screamed so hard that she turned blue, before going pale and floppy. It took hours for her to regain her colour as she slept.

All the tests came back normal. Nothing was seen on her MRI, her EEG’s were read by both Neurologists in Hobart and Paediatric Neurologists in Melbourne, and the immediate bloods came back normal.

We stayed in hospital for four days, spent the weekend at home and then spent another 2 days in hospital, before we were discharged on pyridoxine (vitamin B6) to await the results of metabolic testing – a wait of possibly 6 weeks. I missed my daughter’s sixth birthday, because I was in hospital with her baby sister.

A week or so after being discharged, we noticed that Evelyn could no longer see. Coupled with increasing intensity of her seizures, we were told to go back into Emergency immediately. There, she showed no blink reflexes to bright light, something that concerned her entire medical team.

Her seizures by this stage were lasting anywhere between 30 seconds and five minutes, in clusters of up to two hours. She was sleeping 22+ hours a day as well, seizing in her sleep.

Evelyn was admitted back to the Paediatric ward, and started on Phenobarbital, an anticonvulsant. Another lumbar puncture was attempted, this time successfully and her CSF was sent away for testing. I can’t begin to explain how miserable it is to watch someone poke needles into your tiny daughter’s spine.

Ophthalmology couldn’t find anything structurally wrong with her eyes, and her previous MRI had ruled out a brain tumour, so we were none the wiser as to why she couldn’t see – let alone why her vision appeared to be changeable.

After another four days in hospital, keeping a seizure diary the whole time (her record was 32 seizures in 45 minutes), she was discharged again, to follow up on test results as an outpatient. Doctors had witnessed her seizures at this stage and labelled them “complex partial seizures.”

A month later, with visits to her Paediatric team as an outpatient, Evelyn continues to confound everyone. Her metabolic tests have come back clear, and everything else is normal. There’s nothing on her MRI, her EEG’s were normal (but there’s the chance that her brain was too small for the electrodes to pick up seizure activity) and no one can think of anything else to test for.

And yet, she continues to have seizures regularly. Anything up to 150 a day. She sleeps most of the time, and her vision is sporadic. She can see movement and she uses her peripheral vision a bit, but it’s changeable. She’s been diagnosed with Delayed Visual Maturation (sometimes known as Cortical Visual Impairment) and we need to wait and see if it improves as she gets older. She very rarely makes eye contact, and has no interest in our faces.

She does smile, but only to our voices – and while I’ve heard her laugh twice, both times she was in the middle of a seizure, so it hardly counts. She doesn’t watch toys or mobiles and spends most of her awake time light gazing.

She’s been taken off the Phenobarbital because it wasn’t helping and is set to have another EEG in the next fortnight, while we “wait and see” what happens. Frankly, I’m sick of waiting and seeing, as I watch my tiny baby seize over and over again.

She’s now 11 and a half weeks old.

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