Monthly Archives: October 2013

Image from flickr, a Pumpkin head: http://www.flickr.com/photos/14119298@N00/1737062656/in/photolist-3DuUd9-3G3ByD-3HE88L-4ugKoU-4xxm29-4DhKTP-4Dn1NY-4EcZ8B-4EZxe6-4EZxKv-4Lcm2U-4Vuj9h-542kvt-542kEc-546zFm-546A5W-5eU5xb-5oviYR-5rhWJr-5rUzpN-5rUzqY-5vdyRW-5vdz7b-5wrHPx-5wssVk-5wXohE-5x2qdP-5x7wGd-5x8vDr-5xg1DV-5xgfTC-5xKKx2-5xMtsc-5xRRAq-5y6gou-5y9FoZ-5ybNb7-5yhB1D-5yCxoQ-5zbyH5-5ATTep-5DcKhP-5EvjNz-5R233K-5Rjqyw-5YVCje-6vsUJ5-73CKjK-75fofw-75BvoH-77fHWc

Creating the #HalloweenTop10 Playlist. . .

Halloween Top 10 It’s that time of year; October is here and in a few weeks we’ll be celebrating all things ghoulish with Halloween. But what would be the ultimate sound track for this month? – Is it possible to create a Halloween top 10?

After all of the comings and goings with Mattie it is great to think about something a bit more light hearted. So here are my top 10 tracks for Halloween:

In 10th place. . . People Are Strange

“Michael… Michael. . . Michaeaaaaaalllll Mawahahaha” – The screaming mantra from many a teenage girl who watched “Lost Boys”, a movie which left the rest of us thinking “What’s the dude from the Goonies doing in that?”. – Well let me tell you, he was kicking some Vampire’s butt. The vampires have invaded a sea side town, only to meet their match when they encounter a Goonie, who drives a steak through the heart of this movie. If only they’d introduced Goonies into Twilight – now that might have been a movie worth watching! With holy water in water pistols and very sharp pencils at the ready, Bella’s dad wouldn’t have had to worry about a Vampire trying to date his daughter.

In 9th place. . . Back from the Dead – Spinal Tap

“Nothing’s more fun than flipping off the reaper”. 80’s fictal rock band resurrect themselves in a feat not equalled since Mary Shelly’s bad dream. They are determined to start giving satisfaction and, well getting some too. Just don’t ask them about what happened to their drummer, that’s a tale best left untold. In the meantime, you know what to do . . . turn it up to 11.

In 8th place. . . Monster Mash

This always made me wonder what a real Monster (potato) Mash would look like? What would you add to mash potato to make it ‘monsterful’ and scary?. I’m getting side tracked, and this is a track that you cannot avoid at Halloween, a cheesy classic of the highest order. Listen if you dare…

In 7th place… Dragula – Rob Zombie

I know what you’re thinking too – what would Halloween be, if a Zombie Dracula didn’t drive through the forest running over random witches? – “Pointless Chris!”, “Pointless!” I hear you cry from the other side the screen. I think you might be right. . .

In 6th place… Ghost Busters Theme Tune

The opening bars are all that’s needed for a legion of now adults to be transported back to being kids watching this movie for the first time. Ghosts and comedy in a movie which doesn’t suck . . . an important event for any child.

In 5th place… Sweet Transvestite – Rocky Horror Picture Show

Dr Frank-N-Furter and the quest to free Rocky from his evil clutches. Camp, raunchy, funny, and with a nod to almost every classic horror story you’ve ever read, and some serious amount of random Sci-Fi elements. This has to be included, even just for the “anticip. . . ation!” . . .

In 4th place… Tenacious D – Tribute

Two singer/song writers are lost on an old country road in the dark of night when they encounter a demon. The demon says that unless they play the best song in the world that he will eat their souls. Of course facing such super natural occult odds, what’s two guys to do but actually play the greatest song in the world. . . just a shame they can’t remember what it was.

In 3rd place. . . RE: Your Brains – Jonathan Coulton

Your work place has been taken over by a zombie virus, turning your coworkers into the undead. While still maintaining good office etiquette they try to arrange to eat your brains. It could be the morning after the Christmas party or … It could be Halloween! – Now Jonathan Coultan has put the occult phenomenon to music. The challenge is to listen to this track while in the office and not to run screaming from your co-workers.

In 2nd place. . . Werewolves of London – Warren Zevon

There is a werewolf, he’s lost in London, quaffed with the perfect hair and after downing a cocktail or two in Trader Vic’s he heads off in search of a beef chow main from Lee Ho Fook’s. What a story for Halloween.

In 1st place. . . Thriller – Michael Jackson

After a night out at the movies a girl discovers that her date for the night isn’t Michael Jackson, it’s a .. a .. Zombie Overlord.. . who can dance, surprisingly well. Just remember “No known mortal has been found who can resist the evil that is the . . . Thrilleeeerrr. . . “

Mattie and Emma

Mattie’s Progress – Returning Spasms & Physical Development Report

Last Night

Mattie peered at me from his just over Emma’s shoulder as she carried him away from me towards his new bedroom. Just out of the bath he was wrapped in a warm towel and was pleased as punch after splashing in the water. We made eye contact and I got a huge smile, he reached out toward me his arm over Emma’s shoulder. His eyes twinkled mid smile. Then in an instant he was gone. For half a second the Mattie I knew, “My Mattie” vanished, his eyes rolled up into the back of his head. The spasms had returned. Subtle no more – it was clear they were back. It was time to make the call to the hospital and to talk about upping the dose of Vigabatrin.

It was only one spasm but after such a good run of not having any was really disheartening to see them return.

Today – Thursday

Emma took Mattie into Temple Street Children’s hospital again today, it was a scheduled trip and nothing to do with the increase in medication. Rather Mattie was in to be assessed by the physio and occupational nurses. Infantile Spasms (west syndrome) can cause regressions and slow development and this was Mattie’s progress checks by two experts who know exactly what they were looking for.

The physio nurse concentrated on assessing Mattie’s gross motor skills, and the occupational nurse checked for Mattie’s fine motor skills.

The Not so Cheery, Cheerio

At one point the nurse placed some cheerio’s on the plate in front of them. He’s in no way ready to actually pick them up – something he should be heading toward at 7 months.

The Results

The tests done, the results came back. Mattie is behind in some of his development. He needs more strength in his arms and his hands, with some additional fine motor skills in his hands in particular.

We’re lucky in that Mattie is very young and we’ve caught this so early, we’ve got the chance to do something about it. We’re also lucky that Mattie isn’t too far behind, according to the nurses unless you were looking at him with the same critical eye that they have, the areas he’s behind on would not be immediately noticeable.

The nurses gave Emma a set of instructions and suggested exercises which can help Mattie. – The doctor has ordered more tummy time as this should help Mattie develop the muscles in his arms which he needs, when these develop more it should also assist him in his fine motor skills.

Increasing the Drugs

Chart of Mattie's Medication and Spasm Count (Oct 10)

Chart of Mattie’s Medication and Spasm Count (Oct 10)

During the course of the day Emma noticed Mattie being ‘skittery’, and ‘jittery’ as he was when we first moved onto Vigabatrin. But after our observations yesterday the spasms are definitely back, no second guessing required. As we had planned after observing them last night Emma called the hospital. After speaking with nurses and conferring with the head of neurology, we decided to up Mattie’s dosage to 1000mg of Vigabatrin per day (90.90mg /Kg). Let’s hope this does the trick, I know Mattie could do with the break… The good news is that the neuro team have been very impressed with the way that Matte has responded to treatment overall so far. Even with this increase Mattie is still on a low dosage, and they are pretty confident that this increase should take care of it.

Learning about Learning: Myelin, Infantile Spasms

Infantile Spasms and Why…?

The interesting thing about infantile spasms (west syndrome) is that it happens to infants, not to adults (the clue was in the name). Infants do grow out of it. We also know that Infantile Spasms can have a huge impact on a child’s development. The obvious questions all revolve around “why?”:

  • Why do children grow out of it?
  • Why does it have such a huge impact on a child’s development?

Recent Research

While not covering Infantile Spasms directly, this article from the BBC details the results of research, published in the Journal of Neuroscience into language development in Toddlers.

The study which was lead by Dr Jonathan O’Muircheartaigh, from King’s College London, looked into brain formations and language development. The research showed that “myelin”, a kind of insulation that forms in the brain develops over time and by the age of 4 the myelin has effectively locked into place.

Myelin is an electrical insulator, as we grow, myelin develops around the neurons which form the brain. It prevents electrical activity from escaping from a neuron, and helps make a neuron faster at propagating an electrical signal within it.

The study indicates myelin formation stops when we reach the age of four. It also suggests that a lack of myelin, as we grow, helps us to learn and pick up new skills and abilities quicker. Without myelin new connections between neurons can form quickly, effectively signals will jump from one neuron to another. After myelin coats a neuron it will insulate it, preventing these connections from being made.

The study also suggests that there may be a link between myelin and slow language development, a key symptom of Autism.

The interruption of this process of forming new connections, with conditions like West Syndrome will have a large impact on a child’s development, since the connections which form between neurons when we are under four appear to be more difficult to change as we age. This causes learning difficulties. It also explains why Infantile Spasms can have such a large impact on development; it interrupts our neurons, during a crucial window of development, as they try to make connections between each other and form our brain.

Myelin and West Syndrome ( Infantile Spasms )

In 2007 research by Shiga University of Medical Science in Japan looked at a link between delayed development of Myelin and Crytogenic Infantile Spasms. The team in Japan concluded that while they did find evidence of delayed myelin development in 55% of the cases they looked at, they did not see a clear positive correlation between delayed myelin development and Infantile Spasms.

Ticking off the “Why-s”

From what I read it looks like myelin could be a factor, but it’s not the root cause (if a single root cause exists). While I think I’ve answered why Infantile Spasms has such a large impact, I still haven’t completely understood why babies can grow out of it. – I guess that’s a job for more reading at another time.

Mattie feeling better. With out Spasms and Keeping his head up

Mattie – Is he back to normal?

Tuesday 2nd October 2013

“Is this baby ours?” – It’s a question Emma and I asked ourselves as we lay in bed listening to Mattie in the cot beside us. It was 3am, and Mattie had been playing and giggling from 1:30am, and has no sign of slowing down… Maybe he’s hungry?

First Week on Vigabatrin 600mg / day | (54.54 mg/kg)

Mattie has made some good steady progress over the last couple of weeks. Over the first week we saw Mattie’s spasms drop off. It became very hard to tell if he was having them. Mattie’s demeanour changed, he became more excitable and interested in everything around him. We got even more giggles and laughs, it was a joy to see. I hadn’t seen any spasms at all, but Emma, who is still on maternity leave with him, was convinced that he was still having mini spasms.

Slight Spasms

The spasms have changed in nature, they’ve gone from a full on sequence of jerky movements, like we’ve recorded in our initial blog post, to something much more subtle. A head jerk, or an odd eye role, twitchy movements of hands, movements repeated for a long time. The repeated movements reminded me of watching people high on ecstasy dancing in a night club, the repeated dance steps, were like Matthew’s repeated head movements.

But eventually over time even these movements have become less frequent, and ness noticeable. To the point where we end up asking ourselves, “Was that a spasm, or has he just startled himself – like a normal baby?”.

Check-up Monday September 23rd 800mg | (72.72 mg/kg)

The plan we agreed with the doctors had always been to increase the dose of Vigabatrin on a weekly basis until it reached the point where Mattie’s spasms had disappeared. This is something both Emma and I are careful to watch, as I mentioned in a previous post the side effects of Vigabatrin include possible permanent vision loss. We used Mattie’s weekly check-ups as the opportunities to assess the need to increase the dosage. As I hadn’t seen any spasms I was reluctant to increase the dosage, but right there during his check-up he had two spasms, and they were witnessed by Emma and the nurse. This was ultimately bad news, but it was great to have someone else there to see them happen. They had become so slight that it was getting increasingly difficult to confidently spot.

Check-up on Monday September 30th (dosage / kg)

Over the course of the week since the last check-up Mattie has continued to improve. He became more alert and more crazy! – Giggling laughing, and physically a lot more active. It’s as if he’s a super charged car, which has been driven with the handbrake on, now it’s been released he’s zooming away. At his check-up on the 30th he got the all clear from the nurses and it was agreed that there was no need to increase his dosage.

It is still very hard to be sure that he is not having any more spasms. He’s so very active, we had thought his older brother Ben was active, but this is on a different scale all together. That it has made Emma and I wonder if the over activity is related to the Vigabatrin, or the Infantile Spasms themselves?

I would like to have another EEG, just to prove that the hypsarrhythmia has gone and that Mattie’s back on full form, but we had agreed with the consultant that it would not be necessary as the consultant said at the time it wouldn’t provide him with any additional information. But the more I think about it, now, the more I find that hard to understand. If the original idea had been to treat the EEG (the hypsarrhythmia) and that the removal of spasms would be an indicator that the EEG is back to normal, well then, now… when we’re not sure that the spasms have completely passed, and we’re struggling to tell, – isn’t it now a great time to check with the EEG? It is something I feel I need to raise with the consultant, just to be sure.

Wednesday 2nd October

Emma had searched the internet and learnt that the jittering and excited-ness is also a side effect of Vigabatrin. Perhaps with would explain Mattie’s excited-ness during the nights?

The Bug Strikes…

We’d just sat down in front of the TV, both boys where in bed and all was quiet in the house. When I heard it – a cough. “The cough” which changed what was to be a relaxing evening, complete with some down time to update this blog, into another all night sit up. Except this sit up was to be one most parents are familiar with. The winter vomiting bug had arrived and poor Mattie was the first in the family to come down with it.

I headed up stairs to find Mattie awake, and smiling in his cot, but all around him was a halo of vomit. Poor guy.

We’d been told that Mattie’s immune system would be compromised after taking the Prednisone, and it would take some time to recover. We’d also been told that if he gets anything like a vomiting bug that we were to not wait around like we would if it was Ben, but to get in touch straight away. So after cleaning Mattie up and bringing him downstairs I called Temple Street and spoke to the on call medical registrar. After explaining Mattie’s background she told me that the intake of fluid was important, and to try Mattie on some dioralyte. Assuming he could keep that down he would be doing well. If he was having any trouble with taking fluids that we should seek help straight away.

We started the Dioralyte that evening, giving him small drops every 10 minutes. Within an hour we had a full “exorcist” baby moment and everything came back up. However the next hour went much better and eventually Mattie fell fast asleep.

Thursday 2nd October – Docs check-up all ok, you can relax now.

The next morning Emma took Mattie in to see the GP. He got the once over and we got some reassurance that he was OK. The doctor was telling Emma that now the treatment is starting to work for his IS (touch wood) we can start to look forward to treating Mattie just like any other baby. It was great to hear this, and I guess after all of the stress of the last month it still seems a little odd to treat him normally.

Friday 3rd October – Is this the return of Infantile Spasms?

Mattie woke early after a restless night. He was still tired from the day before and his little system is probably recovering from the bug.
Emma was with Mattie, when the spasms returned. Five in a row, slight, but definitely there.

In the morning Emma called and spoke to the Neurology Registrar at Temple Street. Normally a spasm would trigger an increase the Vigabatrin dose, however the Reg suggested that we wait. See how it goes over the next day or two, was this a once off? Or is it a trend? – Only time will tell. If Mattie appears to be developing normally than there isn’t anything to worry about, yet.

Saturday 4th October

Today was a great day, Emma and I cleared out the nursery and got Matthew’s gear moved in. Tonight Mattie spent his first night in his own room. To achieve this Emma and I both needed to get stuck into all of the junk that had been deposited in the nursery. Emma’s sister had offered to look after Mattie, while Ben got to hang out with his Grandfather. It was great to get a second pair of eyes on Mattie, to get a different perspective, and apart from Mattie still recovering from his tummy bug, and his appetite being less than before there really wasn’t anything to report. . . a normal baby once more.

From speaking to other parents we’ve met via Facebook Emma discovered that often an illness will bring back some of the spasms, but this is normally due to the baby being under some increased stress because of the illness.

It was also a huge milestone for us as a family, Mattie got his first night sleep in his own room, and we got the first night in our room alone.

Sunday 6th October – More Spasms?

Matthew was just sitting in his new bath chair, in the bath. Holding him tight I reach up to wash him with a sponge, when he jumps, back straight. — Was that a spasm? The rest of the day had been normal. Nothing unusual. Mattie had slept well in his own room, and the only news to report was that his appetite still isn’t 100% – but then perhaps we’re just seeing it return to normal after the Prednisone has worn off.

But after his bath, as Emma was getting him ready for Bed Emma thought she saw two more spasms. We think we did, but it is just so hard to tell.