Update 4 - Starting Steroids

This morning, Kataraina's mum told me that baby has begun a course of steroids (she couldn't remember the name of them at the time she told me). Baby's seizures have increased in frequency to approximately one an hour, so she is being weaned off the Vigabatrin at the same time that she is starting the steroids.

The steroids, it is hoped, will reduce the Infantile Spasms, though the possible side effects include:

• puffiness/swelling
• breathing difficulty
• lowered resistance to infection (ie weakened immune system)
• agitation/irritability
• delirium

Her course of steroids will go for two weeks, so hopefully she progresses in terms of her seizure activity during that time. However, it does mean that she'll be in Starship Hospital for a while yet.

Update 3 - Morning Spasms

Kataraina's mum visited me this morning and told me that she had a cluster of seizures/spasms this morning that lasted for 17 minutes. She's still in the observation period for the increased Vigabatrin, so there probably isn't anything will change yet. By tomorrow, if she hasn't improved, then they will most likely begin her on steroids, though no action can be confirmed at this stage until we get to that point.

Dr Leonard (Callum's locum) said the Palliative Care Team at Starship are hoping to get a chance to speak with Kataraina's mum and dad about support they can provide since they are becoming regular Starship residents. Though Kat's mum says it's not about supporting a family whose child is dying, but about what options there are in terms of extra care and comfort.

From the Palliative Care Team's webpage: "Palliative Care for children and young people is an active and total approach to care embracing physical, psychological, emotional, social, cultural and spiritual elements. It focuses on enhancement of quality of life for the child or young person and support for the family throughout the course of the illness, death and bereavement. It includes the management of distressing symptoms (physical and psychological), co-ordination of care in the community and grief and bereavement support."

Visiting Baby

Uncle Wayne and I went to visit Kataraina in Starship Hospital tonight. We were lucky because when we arrived, there were no other visitors, so we could be greedy and have her all to ourselves for a little while!

Shortly after we arrived, she awoke and went into a what became a cluster of seizures. Her heart rate shot up to 204bpm. She had tears in her eyes, groaned and curled up - a pattern which repeated for about six minutes.

Then she went back to sleep, and she stayed soundly that way until we left about an hour and a half later.

Her Vigabatrin (yes, I have misspelled that drug through this entire journal!) has been increased. She will be observed for improvement for the next 48 hours, and if her seizures continue as they are, they will most likely begin her on steroids for the Infantile Spasms. Results from the steroids could take a couple of weeks, so it could potentially be a lengthy stay in Starship for Kat this time around.

Here's a photo of our little oompa-loompa.

Update 2 - Infantile Spasms

This from Kataraina's mum:

"Baby has been having infantile spasms, and the doctors said it's not good because they are causing her pain. They have upped her Vigabatrin, and if that doesn't work, they will try Diazepam (valium). If that doesn't work, they will have to give her steroids, and the side-effects aren't nice. She has an EEG tomorrow, and her meds are being monitored for 48 hours. If they give her steroids, it could be up to two weeks before they know if it's working."

So that's the latest from the hospital. The following info is from the National Institute of Neurological Disorders and Stroke:

What are Infantile Spasms?
Infantile spasm (IS) is a specific type of seizure seen in an epilepsy syndrome of infancy and early childhood known as West Syndrome. The onset is predominantly in the first year of life, typically between 3-6 months. The typical pattern of IS is a sudden bending forward and stiffening of the body, arms, and legs; although there can also be arching of the torso. Spasms tend to begin soon after arousal from sleep. Individual spasms typically last for 1 to 5 seconds and occur in clusters, ranging from 2 to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age 5, but are often replaced by other seizure types. West Syndrome is characterized by infantile spasms, hypsarrhythmia (abnormal, chaotic brain wave patterns), and mental retardation. Other neurological disorders, such as cerebral palsy, may be seen in 30-50% of those with IS.

Is there any treatment?

Treatment with corticosteroids such as ACTH (adrenocorticotrophic hormone) and prednisone is standard, despite the risk of serious side effects. Newer antiepileptic medications, such as vigabatrin (currently not approved for use in the US) have shown some efficacy. A small minority of children has secondarily generalized spasms as the result of cortical lesions (areas of damaged brain tissue). Removal of these lesions may result in improvement.

What is the prognosis?

The prognosis for children with IS is dependent on the underlying causes of the seizures. The intellectual prognosis for children with IS is generally poor because many babies with IS have neurological impairment prior to the onset of spasms. Spasms usually resolve with or without treatment by mid-childhood, but more than half of the children with IS will develop other types of seizures. There appears to be a close relationship between IS and Lennox-Gastaut Syndrome, an epileptic disorder of later childhood.

What research is being done?

The NINDS supports broad and varied programs of research on epilepsy and other seizure disorders. This research is aimed at discovering new ways to prevent, diagnose, and treat these disorders and, ultimately, to find cures for them. Hopefully, more effective and safer treatments, such as neuroprotective agents, will be developed to treat IS and West Syndrome.

Update 1 - Into the Starship

Kataraina's mum rang around 12.30am last night. She said they'd just been put in a room (finally!) after almost 6 hours of waiting in the Emergency Dept at Starship. During their wait, Kat had two seizures. She is now on IV fluid and just has a wee heart/oxygen monitor stuck to her foot for observation.

They already had an appointment scheduled for today with the specialist (Callum's locum from the UK) so they'll be speaking to him this morning and should know more by lunch-time.

There's a possibility Kataraina's Vigabatrin meds will be increased - though I thought she was already at the limit, so we'll wait till we hear more.

Oh, and I do colour-code these posts, which is why the posts which indicate Kataraina's return to hospital are red and usually a different font. I've taken the "alert" down to orange at this stage because she's at the hospital, she's being observed and they'll be working on a solution, so those are positives.

Starship Calling

Just got a call about 10 mins ago to say that Kataraina is waiting for a room at Starship.

Unfortunately, her condition has taken a turn, and since midnight last night she has had six seizures, which are lasting up to four minutes at a time.

The seizing causes her to have extreme difficulty breathing, hence the quick move to get her into hospital.

Haven't heard anything else yet, but will be posting frequent updates as news comes to hand.

Meeting Another Nanny

Tonight my mum came up, so I sneakily arranged for a "surprise" visit from Kataraina and her mum. Thankfully, Kataraina's nanna brought her digital camera, so we finally get to have some decent pics of Kat again!

Nanny Martha (my mum) had not seen Kataraina since she was born and was comatose in Middlemore Hospital, so it was a wonderful shock to not only see baby but to see how much she has grown now.

Nanny Martha was tentative and overly cautious at first, because she didn't want to accidentally cause Kataraina's feeding tube to come out or to cause her any discomfort. But once she had that baby in her arms, it was gonna take some fighting to get her to give her up again - it took AGES for the two nannas to finish their cuddles with baby when it was time for her mum to take her home for a feed!

But at least she managed to wake herself up right near the end of her visit, just long enough for Nanny Martha to see her opening her eyes and moving around and twisting up her face into all sorts of funny looks.

Luckily, Kataraina is a heavy sleeper and can be held and cuddled without causing her much disturbance at all!

* People have recently asked me how many people are viewing the site. I had no way of knowing, so I've finally put in some code for a hit counter, which is underneath the table of links on the left. I tried to go for something small and relatively unobtrusive, so it's ugly but it does the trick.

Open sesame!

Went to see baby today and took many pictures in attempts to catch her with her eyes open.
She has a weepy right eye, so she can't open it as much as the left eye at the moment.

She woke up before I left, but only stayed awake for a few minutes.

She was a bit wheezy sounding, but she is otherwise doing ok. She is not taking a bottle yet. Her mum says they will have to encourage her to learn how to suck again because it's like she has forgotten.

Still, couldn't resist the urge to tickle her again though!

Viv's pics

This is not an info post, just a chance to put up some of the pics Aunty Viv took.

Unfortunately, upon closer inspection, it seems that whoever the person was that took the photos must have been either over-caffeinated or under-caffeinated because they are all blurry! So out of a potential... bunch of photos, I ended up posting the two clearest taken on this day.

It's me again!

Well, I took Ebz and Maycen to visit Kataraina this morning, and we stayed for about an hour and a half before leaving, because I had a work thing to do at 11am. She has wide-awake periods now for a little while. She's still such a wiggly worm!

Then I went to visit Louise for a cuppa and she wanted to see baby, so by about 1pm or so, there I was again - visiting baby! She's gradually getting her voice back and was squeaking a bit here and there, but I'm sure she'll be crying again before too long. She has been weighed by the nurse and is a very healthy 13lb (or 6.1kg)! That's a fair few pounds of butter alright. She is now ... I think her mum said 61cm long. So her rate of growth is good, and her mum says she's a little oompa-loompa! :o) But at least she's a cute little oompa-loompa, not like a crazy, green and orange type of oompa-loompa!

Home at Last

I just spoke to Kataraina's Mum. She said that there was no more medication that the doctors could prescribe, and Kataraina had started to wake up for very short periods, so the hospital let them go home.

Kataraina is still having seizures, though less frequently now. The seizures now, though, are body-shaking ones, not just her hand opening and closing or her eyebrows going up and down. It's OK for now, and she is staying awake for about 20 minutes at a time.

The hospital staff advised Kat's parents that if the seizures became more frequent again (like 11 in a day), they would have to take her back to hospital.

So that's the latest from me, here in Auckland. Have a great week, everyone!

Outtahere!

Got the news today that Kataraina was being discharged from Starship! YAY!!!

I haven't seen her, and I'll be working tomorrow so it may be a few days before I get to go around to her house, but I think she was spending today at her Nana Dear's house for a Christmas get-together, so I'm sure she'll be absolutely exhausted and all cuddled out by now :) I'm sure everyone would've had a great day.

Will post a pic when I take one!

* Comments Function

For all those frustrated readers who tried to post comments but had difficulty, I've adjusted the settings now, so it should hopefully be a piece of cake.

Thanks to Aunty Millie and Moka for your comments :) Glad you like it.

Ticklish Tot

I went to the hospital to visit Kataraina and her mum this evening. Kat is still Lil Miss Floppy, but a new development - she responds to tickling!

If you tickle her under her armpits, she raises her arms above her head. It's so funny and adorable.

She moved her arms a little while I was holding her and even opened one eye slightly.

However, the not-so-great news is that she had 10 seizures since last night, each lasting for a few minutes at a time and pushing her heart rate up between 180 and 195 (The normal rate would be around 120).

So this means she won't be home by the weekend. Her Vigabatrim dose is as high as it can be, and they won't increase her Sodium Benzoate any higher either. This is because of her bodyweight. If they gave her more, well, the results could be fatal.

I just happened to have a measuring tape in my handbag, too (as ya do) and we took a rough height measurement while she was laying in her cot. She's about 66cm long now!

Will post more as it comes to hand.

Message from beyond the... babe?

So, latest reports are in that she is moving but still hasn't woken up.

In the meantime, this photo is an example of what happens when people aren't awake to defend themselves! Viv... and moisturiser gone artistically astray!

A Twinkle of Hope

Well, it seems - from what I've heard - that perhaps Kataraina's status is moving up! According to reports (to use a cliche) she was moving her arms and legs this morning, though she has not yet woken up.

I'll keep posting updates, but I'm hoping this news is a sign that she is gradually returning to consciousness. If so, good! She'll get to go home again soon :)

We'll cross our fingers and toes and see what tomorrow brings.

Sleeping Beauty

I got a message today, saying that Kataraina's condition had worsened overnight and she had continued to have seizures. She is breathing oxygen via CPAP, and she has still not woken up.

They have increased her medications as much as they can for her weight, so now it is a waiting game.

• We wait to see if her glycine levels will decrease.
• We wait to see if she opens her eyes.
• We wait to hear her whimper, squawk, squeak or cry.
• We wait for her to kick her legs and wave her arms.

Kataraina's Aunt Viv (her mum's sister) just got back from working a rafting/kayaking season in Norway on Saturday. I hope that Kataraina plans to get well soon and stick around for a lot longer, because she is sleeping through a whole lot of opportunities for crazy fun with Viv!

It looks like she is subtly regressing to the sort of condition she was in after birth, when she was in Middlemore Hospital. I hope this is not the case. Though the actions are similar - going from conscious to drowsy, to losing her 'voice', to becoming floppy and going to sleep - she was a lot worse at that time, perhaps because she was receiving no medication at all.

I'm being optimistic and hoping she pulls through, but we can only cross our fingers for another miracle for our baby. In the meantime, her aunties and cousins went to the drawing area at Starship tonight and made a little card with a bird on it, a kayaker made out of pipe cleaners, and a painting covered in glitter and stars that read "Get Well Soon, Kataraina". So at least there are things to brighten her room, so when she does open her eyes, she'll see her pictures and a bunch of new soft toys, as well as her mum and dad and all the family.

PS.Tthe charger for the digital camera has been lost, so we're having to resort to less computer-friendly options! :)

Hospital again

On Monday, Kataraina was admitted to Starship Children's Hospital after having approximately 11 seizures between Sunday afternoon 30 Oct and Monday morning.

At the time of admission, Dr Callum Wilson had actually left for Sydney for a few months, I think on a type of secondment. So the Paediatric Metabolic team at Starship, along with neurologists and metabolic nurses are looking after her.

It was thought initially that it may be because she has grown and gained weight that it was time for her medication to be adjusted. So they monitored her seizure activity on Monday and then began the Vigabatrim on Tuesday. On Wednesday or Thursday they started her on Dextramethorphan as well, on top of the Clonazepam and Sodium Benzoate that she was already taking.

After I finished work tonight, I went to visit her for the first time all week. Because of work and an end-of-year Law exam, I hadn't been able to go up and see her until tonight.

She has been asleep for 72hrs, stopped crying on Tuesday, and I feel like she's grown heaps since I last saw her - even though that was only a week ago!

They have said that if she is still not showing signs of improvement by Mon/Tues, they will do an EEG so they can figure out if it's the drugs making her sleepy or if she is having seizures in her sleep that are hidden to the eye.

Hopefully they can find the right balance of medicines to bring her back out of her mental and physical prison. We find ourselves waiting, once again - and all too soon - for Baby Kataraina to open her eyes.

The photo is of Kataraina and her Aunty Viv.