Category Archives: personal

Mattie looking out of the Plane Window, doddie in mouth

World at his feet

I should have updated this blog sooner. It’s been over a month since Mattie was back at Hospital. In late April he returned for what was his final check-up with the Neurology team at Temple Street Hospital.

This check-up had been planned for a while. It’s not often that anyone actually looks forward to a trip to Hospital, but we were. We hadn’t seen any spasms, and developmentally Mattie has come on leaps and bounds.

Both Mattie and his big brother, Ben go to the same crèche. Some of the older boys in Ben’s class will horse around, with a little light pushing and shoving, nothing unusual just typical boy’s behaviour. On occasion it would get a little too much for Ben and he’d start crying. I dropped the two boys off one morning and one of the older boys from Ben’s class walked up to Mattie and pushed him. Rather than getting upset, as his big brother might, Mattie laughed, and then pushed back. It surprised the older boy who took a couple of steps back to recover, but before he could Mattie was toddling up to him to play again, and another push was delivered. Meanwhile Ben looked on in bewilderment. Watching the two brothers play, it would be easy on occasion to assume that Mattie was the older, and Ben the younger.

Ben and Mattie preparing to "Clothes-Line" daddy.. ok, they are actually holding hands

Ben and Mattie preparing to “Clothes-Line” daddy.. ok, they are actually holding hands

Apart from impressing his older brother, Mattie’s speech and coordination have all come along in leaps and bounds. At 2 and a half years he’s starting to string words together to form sentences, just tonight all he wanted to do was “Play Ben”. In fact the relationship between the two brothers has also grown stronger, and they play off each other, Mattie copying Ben, and vice-versa. If Mattie and Ben started coordinating their antics together, and working together more closely then Emma and I would be completely screwed!

Having seen such fantastic progress we were really looking forward to the check-up. Nervous, sure, but quietly positive that his check-up would be good and he’d get the all clear.

Perhaps I have a pessimistic tendency; but it is when everything seems to be going well that I notice things.

“Did I just see that?” – I said it out loud before even thinking about it.
“Yes” said Emma, “it could be just be him messing?” she suggested.
It was Sunday we were sitting at dinner when Mattie suddenly leaned forward, his chest against the table and his eyes rolled back into his head. Less than a second later he was back to normal, and happily eating his meal. – Or at least as happy as a “terrible two” year old can be.

It was worrying, but we’ve not seen it since, and repetition is the key in I.S.

On the day of the check-up Emma took him in to hospital. Emma managed to beat the Dublin traffic and arrived at the hospital before 9 am. However there was a long wait and Mattie, as any two year old would, got a little bored and fed up. However at just after 11:30 am I got a phone call from Emma.

“He’s discharged!” said Emma, “The next time they need to see him, is when he’s 6 years old!”.

They’d given Mattie a battery of developmental progress tests, all of which were positive.

“Your very fortunate. He appears to be one of the lucky ones” our consultant had said.

We are so very lucky indeed. That night we had a “treat tea”; with cake and treats for the two boys. Then once the two boys were safely tucked up in bed Emma and I celebrated with a bottle of sparkling wine.

Mattie has to return to hospital when he’s 6 years old for an eye test. This eye test will tell us if his vision has been impaired by the Sabril he took, we won’t know until then, and ultimately now there is little point in worrying about it. We’re just delighted to have been so very lucky indeed.

From a future that could so very much have been stolen from him, I now feel like he has the world at his feet, and everything to play for. Good luck son, now go get’em – your more than earnt your chance…

Mattie looking out of the Plane Window, doddie in mouth

Mattie looking out of the Plane Window, doddie in mouth

Mattie on the Santa train, eating chocolate with Mummy. Both have just spotted Santa walking down the train.

A Very Different Train Journey; Mattie’s Christmas

12 months ago the whole family enjoyed a Christmas steam train journey. It’s a fantastic trip organised by the Irish Train Preservation Society. Importantly at the end of the trip everyone gets to meet Santa. Last year Ben, our eldest son, had an absolute blast but in the middle of all of the excitement myself and Emma took turns holding Mattie as he shook with spasms. At the time he’d only just started his Sabril, was still bloated from the steroids he’d taken and suffering from conjunctivitis. The future felt very worrying. However, this year’s trip was very different!

Over the last couple of weeks Mattie has been weaned off Sabril, and is now medication and spasm free! At his last EEG on September 23rd there was absolutely no sign of hypsarrhythmia (the EEG signature associated with infantile spasms).

The routine of giving him his medication had become so ingrained in both of us that initially it felt very weird not to dig out the syringe and mix up his drug. A mental itch, like we’d forgotten something.

On the train this year both Emma and I were stretched trying to keep tracks on both boys. I think Ben believed he was on the Polar Express – we were just worried he would try to ski down the length of the train! – of course Mattie wanted to do everything his big brother was doing too! … Fingers in this, trying to eat that, stealing toys off his big brother…

Mattie had a blast with the on board carol singers. They walked the length of train bringing Christmas joy, and in between mouthfuls of chocolate and treats Mattie would try to join in, singing in only the way a nearly two year old can!

It was such a change from last year, and so much fun.

Mattie has come a long way this year and we are all delighted – he has achieved all of the things we were unsure he would; walking, talking and such a strong and funny wee personality. It is the best Christmas present we could have asked for.

We’re also hopeful that he will have escaped the worst of the Sabril side effects; vision loss. There is defiantly no sign he has any, but we won’t know until he’s much older but even if there is some the trade-off will have certainly been worth it. In the meantime the four of us have so much to look forward to.

Next year, Mattie will have one more check-up with neurology in April. Assuming he stays spasm and hypsarrhythmia free the hospital will discharge him. So far it’s looking good!

As you can probably tell from the older blog posts when Mattie was first diagnosed both Emma and I were shocked, a bit dazed, confused, and I think it’s fair to say a little scared. During the nights sitting beside Mattie in the hospital Emma and I would do what the neurology nurses recommended we didn’t; we checked the Internet.

“Whatever you do” said the nurses, “don’t google it. The Internet is full of all the bad cases, no one likes to write about the positive outcomes.” They warned.

Perhaps maybe, in April this blog will help counter balance the current weighting on the internet. I can only hope that in the future another parent, sitting beside their little one in the middle of the night, will stumble across this blog. I hope they know that they are not alone and the blog can help allay their worries a little.

Merry Christmas everyone.

Mixing Sabril with a Flavour

Top 3 tips on Mixing Sabril (Vigabatrin)

Myself and Emma have seen a number of people mention that their children are rejecting Sabril when it is mixed with water; they’ve ask about mixing Sabril with other drinks, and if this is possible. We thought we would share our experiences and the top 3 tips we learnt.

Tip 1 : Worrying about this is normal

In hindsight I’d like to tell you that freaking out is ok. We did it. It’s impossible not to worry. The fact that you are worrying means that you are concerned about the right things.

The basic tips I have on mixing Sabril will sound like common sense, but I remember how absolutely terrified I was when we brought Mattie back from the hospital. At the time both Emma and I were worried about the seemingly ever increasing cocktail of drugs we were giving a 6 month old. At one point we were giving Mattie one drug simply to combat the side effects of another. Then in the midst of all of this he started rejecting his medication, by rejecting I mean spitting it across anyone who tried to give it to him.

It was around 8pm one evening when Mattie had managed to spray Emma with his bed time dose of drugs when we decided to call the Neuro team and ask for advice. – We panicked, we’d only just got him home and the last thing we wanted was to see him return to hospital because we couldn’t give him his medication.

Tip 2 : A Spoon Full of Sugar Helps the Medicine go Down

It must taste awful. I’m guessing of course as I haven’t actually taken Sabril (Vigabatrin) myself. The Neuro explained that we could mix it with something else to take the taste of the Sabril away. As Sabril needs to be dissolved in water she suggested using a very dilute fresh fruit juice; we used a small drop of fresh orange juice and a lot of water. The Neuro also suggested using cordial or squash, but she warned that these can have a very high sugar content and if we did use it, we should mix it with a lot of water.

How we mixed it

  1. Pour a little juice into an espresso cup / or egg cup. Really just a little drop.
  2. Add water to juice. Make it as dilute as you feel you can.
  3. Using a syringe extract the required amount of liquid you require to then mix with Sabril as normal

The fresh orange juice worked a charm, Mattie loved the mix of orange juice and water. We had weeks of success! – Until he started reject that too.

Tip 3 : Change of Flavour

Mattie started rejecting the dilute orange juice mixture. We spoke to the Neuro about it and she pointed out, the kids – *all* kids eventually get board of a taste. Swapping and changing the fruit flavour will help. And it has. We swapped from orange juice to apple and Mattie was back in business consuming the Sabril without issue – and on occasions actually sucking it directly from the syringe before I’d actually depressed the plunger!

So far we’ve mixed most fresh fruit flavours, and when we’ve run out we’ve used cordial and have, on the odd time, just used plain water. All taken without complaint (so far).

I hope these tips help, and I’ve your tried other ways to dilute Sabril, let me know. I hope that if any other parents are struggling with getting their child to take Sabril that these three tips help.

Email.. what?

Ok. So if you follow me on Twitter, or we are friends on Facebook, your probably wondering what all my posts about email etiquette are all about. – Well let me explain.. it all started with an idea, which popped into existence, as all good ideas do, while suffering from a hangover.

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Mattie Playing in Hospital

Mattie Update OT and Physio Report

It’s been a long time since we wrote about how Mattie has been getting on. A couple of weeks ago Mattie had Physio, and Occupational Therapy check-ups. Both went really well.

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Head Colds and Flying Don’t Mix

Don’t do it. Just don’t. It hurts far too much.

Flying with a head cold can be really uncomfortable. If you’ve any tips on how to deal with it, then I’d love to hear them.

It was two years ago and I was in Barcelona for work when I came down with a soar throat and a head cold. I thought nothing of it at the time, it wasn’t until the aircraft took off on the flight home, that I experienced the worst pain I’d had in years. Out of no where someone had stuck a red hot needle into my ear and was trying to simultaneously drive it out of nose and through my throat at the same time.

The thing is, I’d forgotten all about that last experience, until I took this last work flight. A trip to Turin, connecting in Paris, 4 days before the flight I came down with a cold, I had hoped it would clear before the flight, but unfortunately I had no such luck. Instead my sinuses became blocked.

The pain retuned on the flight to Paris, and with it came hearing loss. It took about 2 hours until my hearing had recovered. Unfortunately this coincided with the next flight to Turin. I sucked sweets, swallowed water, blew my nose – in short, tried everything I can think of to try to prevent the pain, but nothing seemed to work.

24 hours later my hearing is just about back, but my ear still hurts. I’ve my fingers crossed the cold clears up before the flight home. Just in case it doesn’t I looking for any tips and tricks I can use to prevent the same pain. If you’ve any – please let me know…

The Friday Movie Conundrum

It’s Friday! – And for me, that’s the last day of the working week, the weather is great (for Ireland) and we’ve got a fantastic two day weekend ahead of us. To help celebrate I’ve been playing the Friday Movie Conundrum with some friends. The game is simple. One of us starts with a movie quote, and the other’s have to guess. Clues can only be given out if there is a lack of response. So folks, today’s quote is :

“Tell it right, COB. Pavarotti is a tenor, Paganini was a composer.”

No googling now! Answer’s on a post card, or alternatively on Twitter using this #fridaymoviecondundrum

Mattie Chillin' in the Car

Mattie’s Check-up at Temple Street (11th February 2014)

We had a brilliant time over the Christmas break, with two trips back to England one for new year, and another to catch up with friends in early Jan. Watching Matthew as he observed other babies, toddlers and assorted infants of all ages was fun. His excitement at wanting to get involved was really reassuring. Since my last post about Matthew we feel he really has made huge progress. However not all has been smooth sailing. During one of our recent ferry crossings I saw Mattie have a spasm, and in total we’ve seen about 10 individual spasms over the Christmas and New Year period. In fairness Mattie had also picked up some sort of virus over the Christmas period, which I’m sure didn’t help. Seeing the spasms made both Emma and I more keen than ever to hear what the doctors have to say about his progress, in particular if anything in his last EEG was concerning or worrying.

Emma’s Report

On Tuesday Emma took Mattie back into Temple Street hospital for his check-up. Mattie was seen by a new Registrar, the head of neurology, physiotherapy and occupational therapy. While he didn’t get another EEG he did get a good checkout, with some interesting feedback.

Neurology & Weight Check

First up was the neurology department where a nurse weighed him and Mattie checked in at 12.7kg. Mattie’s weight is important as it defines the dosage of medication he receives.

Meeting the New Registrar

This meeting consisted of explaining Mattie’s history to a new doctor. Within Temple Street Hospital the registrars all rotate between departments, our last doctor had moved on and Emma spent a lot of time filling in the new Registrar. Emma recapped all of Matthew’s history and touched base on the last EEG, which was performed in Nov, although Emma didn’t get the chance to discuss it in detail. Next the reg and Emma went through the process of checking Matthew’s developmental progress.

Q. Is Matthew standing yet?
A. No… But Mattie is sitting up brilliantly by himself and playing well on his own. The Registrar wasn’t concerned by the fact he wasn’t walking. The Reg shared statistics that only 25% of kids walk by 12 months, which increases to 97.5% by 18 months. Then of the remaining 2.5% only few have reasons for not walking. Mattie has no reason apart from IS, so he should catch up. Mattie’s pincher grasp and eye/hand eye/mouth coordination was excellent. Mattie was really focused on trying to grab his pen whilst he was talking to me – got it in the end and was trying to take the lid off:)

As I mentioned in the past, the drug Mattie is currently taking (Vigabatrin, also known as Sabril) has the potential of causing peripheral vision loss.

The Registrar also checked Mattie’s peripheral vision while Mattie was distracted – his response was excellent 🙂 Mattie picked up on the slightest movement out of the corner of his eye – this bodes well considering the medication he is on.

Verbal Development
The Registrar also asked about Mattie’s verbal skills. Mattie is doing brilliantly here – “Mama”, “Dada”, “Hiya”, and “all gone” (which doc was particularly pleased to hear about – two words together:)). Also Mattie responded brilliantly when the Registrar called his name :)Emma explained the that we had seen two spasms on Jan 28th when he had a virus but nothing since.

Meeting the Neurology Consultant

The Registrar had obviously done all the leg work and filled the Neurology Consultant in. The Consultant welcomed us into the room with a smile and said he heard Mattie is doing brilliantly. Queue Mattie smiling, clapping his hands and banging the table.The Consultant said he wouldn’t change anything and plan to see us in 6 months providing Mattie stayed well.

I had some questions though:

Q. Mattie’s EEG in Nov showed much improvement, little or no hypsarrythmia but a slow electrical background. I asked the significance of this.

A. Apparently his EEG was much improved but one or two individual electrical spikes where observed along the slow background. This can mean a few things:
1. Vigabatrin is keeping IS under control but might not be suppressing it 100% this could account for spikes and slow background may be present due to medication
2. Spike and slow background may be due to another form of epilepsy being present. This will remain an unknown until we wean meds and observe what EEG and Matthew does going forward – so it’s a wait and see

Q. What is the plan for weaning?!

A. The Registrar had said they would wean a year from the last spas`m observed – which would be jan 2015. However the Consultant corrected this, he said we would wean from a year the last significant presence of IS was observed – so that makes it end of September or early October. The plan which was agreed was to return to hospital on September 23rd for an EEG and another appointment with the Consultant, if the EEG is good the Mattie should start to be weaned off his Vigabatrin over an 8 week period. If more IS/seizures are observed then we need to go back in for another EEG to figure out how to treat going forward.

Q. We’re planning on a trip to the US later on this year, but the time zone difference and the time spent travelling may mean that we have to reset or alter the set times we currently give Mattie his medication.

A. The Consultant had no concerns here, apparently Vigabatrin is one of the less time sensitive medications. So giving doses 10 or 14 hours apart will cause no issues.

We’ve also seen Mattie exhibit some odd behaviour, like arching his back and flinging his hands up to his head, particularly when he’s tired. It doesn’t look like a spasm, but it doesn’t look 100% normal either. Emma wanted to check that out too…

Finally I had described some behaviours that Mattie has – which is arching his back/flinging himself back when tired. Fortuitously (or not) Mattie did this at the end of the appointment with the Consultant.The Consultant’s response was that is it’s an odd behaviour but is most likely just that – a behaviour. But again only time will tell, so we just need to keep an eye on it!

Appointment with Physiotherapy & Occupational Therapy Specialists

Physiotherapy

The Physiotherapist’s first impress of Mattie was that he has come along brilliantly in 3 months. Compared to his last visit Mattie is now sitting up fabulously and balancing himself. He’s also reaching, stretching and grabbing well. We’ve also seen Mattie try to start shuffling on his bum, he’s not got the hang of it yet, and when he does do it both Emma and I are pretty sure he doesn’t realise that he’s actually moved himself. But all in all the Physiotherapist thought this was also brilliant.Mattie still hates his tummy time, but the Physio said need to continue to encourage him to do this. The Physio suggested working on getting him on his knees (because he does hold his weight well) and showing him how to get from knees to bum and vice versa.

Mattie has started taking his weight well on his feet too, but there is room for improvement here too. We need to encourage positive pressure on his feet, we can do this by sitting him on one of our thighs and then putting Mattie’s feet flat down on the ground either side of our thigh.

Mattie has all the precursors for walking, we just to work on encouraging him to give it a go.

When we were initially referred to a physio for Mattie we were unable to get a physio close to home. There were none available. So instead we’ve been driving into the centre of Dublin to visit the physio centre in Temple Street Children’s hospital. Things seem to have improved and we are now getting a referral to a closer, more local physiotherapist. Hopefully that will work out. If it doesn’t we’ve a back-up booking back at Temple Street for later on in March.

Occupational Therapist

The Occupational Therapist was absolutely delighted with Mattie :). Matties seems to be doing everything he should be at this age and more :). Mattie’s pincher grip is awesome, he’s passing from hand to hand well, picking blocks out of a box and putting them back in. We just need to encourage Mattie to move up to the next stage; shape sorting !The next visit with the Occupation Therapist is tentatively scheduled for May / June (waiting for appointment confirmation and final date), that should be our last appointment with the occupational therapist! … Wohooo go Mattie!


Mattie playing just before bed – check out those motor skills!

Mattie fast asleep on my kneee, in the middle of Emma's staff Christmas party.

The Pre Christmas EEG Results

The problem with Hypsarrhythmia, the tell tale electrical activity present in an EEG which signifies Infantile Spasms, and can cause brain damage is that it’s transient; it comes and goes. It’s most frequent during tired periods before or after sleep, but it could happen at any time. The spasms we associate with the condition are just the physical side effect of what is going on in Mattie’s brain, they can be subtle and hard to detect. For months now we had been treating Mattie’s condition with the only indication of success being the lack of a spasm. Getting some hard data – a physical measurement via the EEG that the drugs are working is what both Emma and I were waiting for. If clear it would give us confidence that the electrical activity had returned to normal, and we’d not just missed another spasm.

In the two weeks following the EEG we’d called the hospital twice to try to get some feedback on what it showed. When we didn’t hear anything we assumed that, since Mattie was doing so well, “no news was good news”.

It felt like it took forever and a day, but eventually Emma got the call from the hospital and relayed the news to me. The EEG did not show any signs of Hypsarrhythmia! Success! This was fantastic news! But there was a “slow background”, which we were told was common in babies with Infantile Spasms.

I think it’s fair to say that between Emma and I, Emma is the more optimistic; I immediately focused on the slow background news, and couldn’t relax until I found out what it actually means. The truth is overall this was good news, but I just had a nagging feeling, an itch which needed to be scratched, what did this slow background mean?

The EEG’s Slow Background

After talking to David if there is one thing that stuck with me, was not to take things at face value. So I started a mini-research project into the EEG’s “slow background”. What did this really mean?

An initial search turned up an article which suggested that the slow background was a result of a brain injury, or other physical issue – something we’ve been told Mattie doesn’t have:

Following a seizure (ie, during the postictal period) the EEG background may be slow. However, interictal background EEG frequencies that are slower than normal for age usually suggest a symptomatic epilepsy (ie, epilepsy secondary to brain insult). Normal background suggests primary epilepsy (ie, idiopathic or possibly genetic epilepsy). Thus, EEG background offers important prognostic[Christine1] and classification information.

(EEG in Common Epilepsy Syndromes / EEG background frequencies and epileptiform discharges)

So how could this be? Was there something more significantly wrong? We were about to call the hospital back when Emma read an article from another parent on the Infantile Spasms Facebook group, it was asking roughly the same question. One of the answers offered was that a doctor has informed one of the parents that slow background can be a side effect of the medication. I’d not heard of this before so checked it out.

The only EEG modifications induced by GVG monotherapy were a more pronounced slowing of the background activity at rest with EC [Eyes Closed] and a reduced responsiveness to BR [Blocking Reaction].

(EEG changes induced by vigabatrin monotherapy in focal epilepsy.)

This research paper suggested that the medication Mattie is on could produce a slowing of some of the background waves. What did this mean in the real world? – According to the same article it could induce a mild “sedative” action on attentive tasks rather than on cognitive function. I imagine that while the folks in the study could still complete a mental task, it look them a little longer than expected to get it done. – Which is a good approximation to what the doctors had told us to expect.

Mattie Today

Mattie is doing well. In the run up to Christmas he started suffering from normal everyday baby problems, conjunctivitis, and a cold. Emma and I would take this rather than more IS. He’s now 9 months old and has just about got the sitting up straight bit down… Well for good 10 minutes before he gives up. Mentally we think his doing really well; he’s turned into an octopus, hands everywhere, grabbing everything.

Emma’s employer organises a children’s Christmas party in their staff canteen. We took Mattie and Ben down, Mattie fell in love with the balloon sword he had been given, and with a little help from daddy enjoyed whacking his older brother and mother with it. Enjoyed it so much we couldn’t get the balloon of him until, in the middle of the party he fell fast asleep, normally, without any spasms.

We know this is something we’ll need to keep an eye on, but for now at least, we’ve got just what we wanted for Christmas.

Thank you all so much, for your kind words and support, it has made the world of a difference, Merry Christmas everyone – I hope you all have a fantastic Christmas break.