The EEG & Difficult Choices – Matthew and Infantile Spasms

Tuesday September 10th

The Neurology Check In - Temple Street Hosptial
The Neurology Check In - Temple Street Hosptial

Its Tuesday morning, this is a big morning. Mattie is due for his 2 week EEG. We're hoping for good news but suspecting Mattie will need some more help to kick his Infantile Spasms to touch. It's a disappointing thought considering all the great progress Mattie has made during his first week back home from hospital. We are worried too as from what we've read the next line of drugs can be particularly nasty.

The first two to three days back from hospital were hard, we had a teething and tired baby, Mattie didn't seem much better. But towards the end of the week we saw a dramatic improvement - we suspect that it’s not quite enough to prevent further treatment.

Chart of the total number of Infantile Spasms Mattie has had since hospital. The last two days are highlighted red and green. - Is there a pattern forming.
Chart of the total number of Infantile Spasms Mattie has had since hospital. The last two days are highlighted red and green. - Is there a pattern forming.

We've been recording and charting Mattie’s spasms, noting everything from a lurch through to a definitive "jerk". It was towards the end of the week, from Wednesday onwards as the spasms seemed to slow, that we saw the best improvement and the biggest leap.

Mattie's drugs for the day - Steroids and a Tummy stabiliser
Mattie's drugs for the day - Steroids and a Tummy stabiliser

It was harder than expected to get Mattie's dosage right. On two occasions Matthew spat up part of his steroids. The first time he did this we thought we'd let it lie - there was no way to know how much had had taken, and how much was still left to go. However when on Tuesday night, for the second night in a row he spat up we thought we should do something about it. Mattie had managed to spit up at least half of his dose; it covered his bib, so we called the hospital and asked for some advice.

We got through to the doctor on call for Neurology. The doctor advised us that we could give him another half dose. The doc also suggested mixing the diluted steroid tablets with a little flat 7-UP to take the bitterness away. The doc explained "Don't you know, flat 7-UP is an Irish cure for everything!" Unfortunately we didn't have 7-UP to hand, so we substituted dilatable juice. It worked wonders! - Medication delivered!

If Wednesday saw the first noticeable drop in spasms and clusters, then it was Thursday when we saw Mattie’s first big leap.

Looking back to Thursday 5th September

What a day, I worked from home today while Emma and Mattie hung out down stairs. Emma has in good spirits and with good reason too. Although Mattie had still had some spasms today he, it was as if he had a complete miracle week in a day! He was alert and bright and giggling with fun. About mid-morning I came down to the kitchen for a coffee to find Emma and Mattie both laughing away. Mattie was in his jumperoo and was bouncing! A first!

In the past we'd pop him in and he'd last 60 seconds max - before the crying would start. Now as I acted like a Muppet and was jumped up and down myself Mattie would giggle at me, then kicked his legs and start to copy my actions. It was so very good to see.

He didn't seem to have many spasms at all today - this looks good.

Emma: Thursday was the day that I noticed the biggest change in Matthew. LOTS of smiles and giggles! He found his voice....oh my goodness the ?oohs? and the ?aahhs? and the cooing coming from him was absolutely unbelievable! In addition he actually played in his jumperoo!!! Something he has NEVER really done, he happily played in it for about 30 minutes!! He also sat very sturdily and robustly in his bumbo - again something he had never done.

Looking back to Friday 6th September

Mattie was tired and cranky today, and I think he had more spasms today than he had yesterday. Yesterday Mattie appeared to make such a leap, but today his progress seemed to have been slowed a little, and depressingly the spasms are still with him. Emma and I are pretty much living in a state of constant hope; perhaps this will be "the day" - the day when the spasms stop and we don't see any at all. Then there is the crushing feeling when they do hit, especially after the good bit of progress he appeared to make yesterday. Objectively it is perhaps not that Mattie had a bad day, it was still better than when in the hospital, but that he didn't make it throughout the day without a spasm - that was something I think Emma and I were both hoping for after yesterday.

There is still cause for more hope. Emma’s father came back down to visit today. It was great to see him, and it was good to get his opinion of Mattie after his break away from him. Emma’s dad commented on how much more alert and with it Mattie seemed, and he still wasn't jumping at the sound of his voice, something he had done before being admitted to hospital - all good news.

After the disappointment of more spasms, today did manage to end on a really fantastic note. Emma has taken to reading Mattie a bed time story (when he's able for it). Tonight the story was Love Monster. He loves this book! - This story combined with his newly found voice, made for so much noise that Emma actually recorded it on her phone. I'd highly recommend a listen.

Tuesday September 10th - The EEG

Emma giving Mattie a bottle during his 2nd EEG
Emma giving Mattie a bottle during his 2nd EEG

I sit, watching Emma give Mattie a bottle. The room is cool and dark, all the ingredients for a good nap, which is exactly what Mattie needs right now. He's been all go this morning and the room is a welcome relief. The Neurology department is brimming with children and parents; a far cry from last week when we arrived to find a deserted department.

Preparing for today

Last night we started to prep for the EEG, just trying to read up on stuff before talking to the consultant about any further treatment, and wanting to quiz the doctors on the off chance that the EEG is OK, but the spasms remain - which is something that has been known to happen[1].

Emma has done a bucket load of fantastic research which she has started to catalogue and share. We've noticed a couple of things, first off each country appears to treat infantile spasms differently.

US v UK and Ireland

The treatment in both the US and the UK is to give steroids initially. However the types differ. In the USA they use ACTH which is injected into the child. In the UK and Ireland they use an orally administered synthetic steroid prednisolone. The latest research seems to show that the UK and Irish method is just as effective, if not more so, without the risks associated with injecting something. Emma's recent research indicates that the US is progressing toward the UK / Irish norm for first line treatment.

Ireland (or maybe just Mattie) v UK

There are differences between the treatment Mattie is receiving at the treatment recommended in the British Medical Journal. Basically the BMJ suggests that after 7 days the steroid dosage is reviewed; if the spasms are continuing or an EEG shows no marked improvement, then the steroid dose is increased to its maximum for the remaining week, before tapering it off. - Mattie didn't get this; instead he had a single flat level of steroids.


In Japan they often prescribe Pyridoxine (aka Vitamin B6). Which is interesting, because there is another blog Emma and I are following Baby Bradley and his Fight with Infantile Spasms and he too is taking B6, and has been in addition to ACTH.

Second Line Drugs

We've also started looking at potential second line drugs. Wow are those things strong, and wow to they have some potentially nasty side effects. One of the things Emma and I are keen to explore is, if the EEG isn't back to 100% normal (which it shouldn't be - given our observations) can we revisit the hormonal treatment, rather than moving on to the more aggressive and harder second line drugs?

Tuesday September 10th - EEG Progress

Removing Mathews "Digital Dreadlocks" after his EEG
Removing Mathews "Digital Dreadlocks" after his EEG

Back at the EEG, Mattie has still fast asleep when the EEG Operator who had been silent speaks:

The EEG Operator: How many spasms did he have yesterday?

Emma: Seven.

The EEG Operator: Is that the most he's had since starting his medication?

Emma: No, the least.

The EEG operator opens the blinds, letting the mid-morning sun shine into the room:

The EEG Operator: Let's wake up him, it will be good to see if anything unusual happens then.

Looking back to Monday 9th of September

I was in a meeting at work when the text arrived:

Bad News - More Infantile Spasms on Monday
Bad News - More Infantile Spasms on Monday

I had been hoping, so hoping that today would be the day. That he'd have one day without a spasm. But it doesn't look like it - and that's hard. Mattie got so lucky during his stay in hospital, he's in the rare 30% bucket with good prognosis, there is nothing else wrong with him, we appear to have caught it early. On top of this he's made such fantastic progress today.. everything was pointing in the right direction. It's pretty upsetting.

Mattie has been teething like mad today too. With some tiredness and crankiness which is probably a triple combination of teething, drugs and his Infantile Spasms.

Over all during the week he's made some amazing progress:
Emma: Something else that is VERY noticeable. We now have regular nap times again!! 🙂 Mattie will take about a 2-2.5hr nap in the mornings and a 1hr nap in the afternoon. But in between these naps he is awake and interacting! (also sometimes grouchy but thats ok). This is a HUGE difference, prior to his diagnosis even when up from naps he was dosing in his chair and his level of interaction was low. This is massively heartening to see 🙂

Tuesday September 10th - The EEG Results

After the EEG we get taken in to see the head of neurology. Sitting in his office we get the EEG results. If it was an exam we needed an "A"; we got a "C".

Emma and I were worried that the EEG would be all clear. We've seen and felt Mattie continue to have spasms and a clean EEG would mean that the doctors were not getting the same picture as us. The EEG wasn't clear.

The EEG showed a good improvement, perhaps as much as 60%/70%. But the hypsarrhythmia pattern remained present. This aligns with the spasm pattern Emma and I have witnessed.

The Risks

Infantile Spasms, by very definition, only happens in babies. The problem is that small changes to the brain now have huge impacts later on in life. The continuing hypsarrhythmia can have a huge impact. In terms of Mattie that impact can range from a slight learning problem - through to inability to sit unaided, the inability to read or do basic mathematics.

Today Emma and I have the chance to review Matthew's progress. He had tracked the developmental milestones for his age group up until 2 weeks before his hospital admission. During these two weeks his development slowed. Last week he made huge leaps and we feel he has caught up, but just not all the way.

The Head of Neurology's Office

We asked the head of Neurology what the outlook was for his Infantile Spasms. The conclusion was, without doing something it will not get better. It may plateau at this point, or it may reoccur. However all the time the spasms and hypsarrhythmia continues - and continues to alter his brain.

Sitting in the doctor’s office, and working with the head of Neurology we reviewed the options available to us. Importantly in the field of Infantile Spasms there is not enough data to answer many of the questions we had; in particular Emma and I had wanted to know if the steroids would work completely if we increased the dosage?
The head of neurology: There is no evidence that they would. The head of neurology recalled being an conferences where, at the same conference one person had stood on stage and said that the steroid dosage should be upped after the first week, and another had stood up to say if the steroids don't work after the first week - forget them and move on, don't waste the time "testing" theories.

The head of Neurology told us about Vigabatrin (also known by the brand name - Sabril), a second line drug which is used to treat Infantile Spasms. This drug has some long term, non-reversible side effects - it can be pretty nasty. In 30%-40% it causes permanent vision loss. The doctor explained that he had seen some cases without vision loss, and some who were unable to drive a car because of the vision loss. The risks to vision loss increase along with the dosage of the drug.

If Vigabatrin is prescribed and if it works Mattie will be on it for a year. Initially the dosage of Vigabatrin is low, and increases each week for four weeks until one dosage level is found which works, stopping the spasms. If no dosage level works, then we'll drop the drug and reassess the best way forward.

I asked about Vitamin B6, "What's with the Japanese prescribing B6?"
Well according to the doctor there are a wide range of epilepsy syndromes which benefit hugely from the introduction of B6. There however is no data to suggest that Infantile Spasms are one of them. As a vitamin supplement B6 has no significant side effects.

We distilled the options available to us:

  1. Increase the dosage of steroids
  2. Move to a second line drug Vigabatrin (Sabril)
  3. Introduce Vitamin B6

What we know:

  • Time is ticking and with every delay Mattie's outlook deteriorates.
  • Staying on the steroids is unlikely to help.
  • Vigabatrin has the next best chance of helping - but with a significant risk.
  • Vitamin B6 has no known side effects.

This left us evaluating the outcome of Infantile Spasms with and without Vigabatrin . - With and without the benefits, and the risks. In the end we decided, along with the doctor that having Mattie on Vigabatrin - stopping the spasms was the better way to go. The potential benefits - spasm free, and reduced learning difficulties outweighed the risk to his eye sight.

It was, and still feels like a very difficult decision to make. It makes it worse knowing that we're doing so in a field which is largely unknown, with limited concrete data to go on.

We also decided that since there is no risk to using Vitamin B6, that we should go head and use it.

Mattie's Drug Cocktail

Cocktail of Drugs: Matthew's new perscription
Cocktail of Drugs: Matthew's new perscription

Mattie is now ramping down on his steroids, ramping up on Vigabatrin, starting B6 and continuing his other drug to control the impact of his steroids on his tummy. The cocktail of drugs he's on appears to be pretty hard to come by. We ended up trying 5 pharmacies before eventually getting a pharmacy which didn't have what we needed, but could get it couriered to them before Mattie's next scheduled dose of drugs.

Physical Care

Emma asked about physical exercises we could do to help Mattie. There is a physiotherapy clinic in Temple Street. The head of neurology explained that they don't normally refer at this stage, but he'd be happy to - and effectively start Mattie early on this.

Keeping Positive

There are lots to be positive about. Mattie has responded well, just not well enough to the steroids. He was in a good place developmentally to start with, and we appear to have caught it early. As the consultant said, Mattie is a member of a group of people who suffer from Infantile Spasms. As such the average prognosis is not good. There is a subset of this group which do better - Mattie is in that group, but at the same time it is still a high risk group.

Fingers crossed the new drugs will work early at a low dose…

[1] "A standard EEG to evaluate interictal activity may miss the hypsarhythmia pattern, which can be variably present in an awake child, but is detected more sensitively in sleep." - | Back.

Home at last – Mattie and Infantile Spasms (Part 5)

Friday 30th of August – Saturday 31st of August

Friday 30th August

I spent Thursday night in the hospital with Mattie, and Emma eventually got some rest at home – but not until she’d spent hours sending photos of Mattie to friends and family from her phone.

The ward was quiet on Thursday night, even so, Mattie has a restless night. He woke and had a cluster of spasms at midnight, 1am, 3am and then was awake and in great form playing from about 3:30 until 4am. He woke again at 5am, and eventually at 5:30am I gave in and gave him a bottle of milk. He was in great form in the morning and I got some wonderful smiles from him. He had breakfast and at 8:30 he had another set of spasms. Mattie got sleepy, as he does after a cluster of spasms and started to dose in my arm.

It was just a waiting game now until we got called for the optometry appointment.

The Consultant

The consultant who had admitted Mattie on Monday came down to visit. The consultant was in a great mood and was checking that Mattie was now firmly in the hands of the Neurology team. The consultant explained that there was much to be pleased with, Mattie had given some good results so far. The MRI showed no physical cause - this means that Mattie has "Crytogenic Infantile Spasms", the rare form, but the form which as the better prognosis. - Mattie got lucky!!

The Long Lost Smiles are Back!

The Consultant asked how Mattie seemed. I explained that we've got something we didn't know we'd missed... smiles. I had got some great smiles in the morning and Emma had the day before, and it's crazy because even though Emma had told me, it was when I saw Mattie smile that it struck me that we hadn't got many of those over the last couple of weeks. What a joy it was to seem them, it was like Mattie had had a little "wonder week" all to himself.

After the consultant left Mattie woke and was grumpy. I have him another bottle of milk and he settled again and fell asleep. He slept most of the morning until a doctor from neurology came down to visit.


A doctor from the Neurology team came down to see us next. The Doc asked how I felt about taking Mattie home today - it was impossible to hide a smile, "delighted". I asked about the side effects of the steroids. Mattie's course of steroids overlap with Emma's expected return to work, and her (currently) scheduled Jury Service. I explained that this would mean Mattie going to crèche before the end of his steroids. The Doctor said we should avoid that if at all possible. Following Doc’s advice Emma has been working out the best way of extending her Maternity leave. She's going to call her boss and explain the situation to him next week.

The Doctor asked how Mattie was getting on, I replied with the same update I'd given the consultant but added that Mattie had been asleep a lot this morning. The Doc looked a little concerned, but didn't say anything about it.

Mattie was now asleep in his hospital cot and the nurse appeared to take his blood pressure, wrapping the cuff around his leg rather woke him up and he cried. The nurse explained that Mattie's blood pressure was high, but it could be because he was upset and she'd come back later to check. Mattie settled and slept on for another hour or so. The nurse returned and as he woke I picked him up and had him in my arms, she checked his blood pressure and again it was high, perhaps it was the wrong sized cuff, she replaced the cuff and we tried again. No mistaking it now, Mattie's blood pressure is up.

Still asleep I returned him to his cot. He slept on.

I started chatting to the nurses and in the course of the conversation I explained that Emma was heading to Ikea this morning for a new cot. Both Emma and I had noticed that Mattie as enjoying “star-fishing” in his hospital cot. The crib he was sleeping in at home was just too narrow for him now. We’d been hoping that Ben would have transition to his toddler bed, but he isn’t quite there yet. So it’s definitely time to replace Matthew’s cib, and nothing for it but purchasing him his very own new cot.

The nurse commented that, in a few months that this would leave us with both an empty cot and an empty crib.

“There is only one thing for that now” she said, “you’ll have to have another baby to fill the empty beds!”

“Ha!” I replied, “I’ve mentioned a 3rd baby to Emma before, you should see the panicked expression on her face!”

Getting late and Getting Worried

Chris and Mattie in Hospital on the last morning - trying hard to get some smiles from a tired baby
Chris and Mattie in Hospital on the last morning - trying hard to get some smiles from a tired baby

It was getting late, going on for 12:30 and Mattie had been asleep from 8:30, he was sleeping through all the hustle and bustle of a busy ward's morning routine and hadn't really woken. He should be getting hungry as he was late for his normal lunch time. I picked him up and tried to coax him awake, after 10 minutes he looked at me, his head lolled forward and his eyes rolled - he feel back asleep. With this plus his high blood pressure I started getting worried.

Am I being an anxious parent, or is this something serious? - Well I didn't think the jerks we saw before Monday were anything to worry about, and I couldn't have been more wrong. After calling Emma and double checking his lunch time, I grabbed a nurse and explained. The doctor was called.

As I returned from the nurses’ station Mattie woke up - and was starving.... little cute bugger, but after his bottle he fell back asleep.

Still Learning

I’ve started telling other people about Mattie’s condition, when I explain that he has epilepsy I get a “Oh, ok” response. But when I explain what I’ve learnt this week, and how it can impact on a babies development then their reaction changes. When I first heard of Mattie’s diagnosis I thought about the “fits” that you hear about, and occasionally seen portrayed on TV shows. But an infantile spasm is not like that at all. It’s quite subtle, but it’s what’s going on that we can’t see which is quiet frightening.

The Optometry Appointment

Just as Emma arrived in the early afternoon we were called for our optometry appointment. We all exited the ward via a secluded entrance at what we thought was a dead end of the ward; Temple Street really is like Hogwarts, or at least the house from “Cludo” with all of its hidden passages and shortcuts.

Mattie as given the once over by the optometrist and then given eye drops to dilate his pupils. We now had a 30 minute wait before the examination started in earnest. Mattie started to have a few single spasms, but seemed ok.

After the long night I was struggling so I took the opportunity to head home and freshen up. Just as I pulled up outside the house my phone rang it was Emma.

"You have to come back for us, we're going home!"

The optimist had found two perfect eyes with all nerve endings intact and functional. There was nothing wrong. Shortly after this Emma had met with a doctor from neurology who gave us the update from the MRI, the final written update has said Mattie was normal; we were free to take Mattie home!

Thank You Temple Street!

Emma had got the nurses on the ward some fresh baked goods and a thank you card - as I mentioned in a previous post they were simply amazing. The staff at Temple Street are brilliant, there is so much care and thoughtfulness from everyone, consultants, doctors, nurses, even other members of staff that I bumped into in the hallways. So it was so very nice to say thank you in some way.

Emma drove us all home and during the drive she told me about a conversation she had with one of the nurses on the ward.

“I hear your buying a new cot today” the nurse had said to Emma

“Yes, Matthew’s been star fishing in his hospital cot – definitely time to upgrade”

“Oh there is nothing for it then – you’ll have start working on two more babies to fill the empty cots that that will leave behind!” said the nurse.

“I must have given her a funny look” Emma said “because she looked at me for a second, then said ‘Yes, your husband said you’d have that expression’”.

Emma’s sister had collected Ben from crèche. Ben has known something was wrong, he's been great though - but very, very clingy; hugging legs, not wanting us out of line of sight etc. He has known something was up. Ben was very surprised when I turned up at my sister in law’s front door, quickly followed by Mattie and Emma!

We grabbed a quick cup of tea at as it gave us time to give Mattie his dinner and fill Emma’s sister and brother in law in on the days updates. Unfortunately Mattie has another cluster of spasms as Emma was trying to feed him.

We got home, and Emma hit the Ikea flat packs with force. I hung out with the two boys, Mattie falling asleep on top of me, and Ben sitting with treats watching "Despicable Me" on TV.

One of our neighbours popped over with a little bag with a gift and a get well card for Mattie in it. It was a lovely gesture.

After 45 minutes Emma was done with her handy work and Mattie was safely ensconced in his new bed.

Myself and Ben took this as an opportunity to hit the local Pharmacies to pick up Mattie's prescription, it was getting late and the first Pharmacy we called to didn't have the drugs in stock. Luckily the pharmacist was able to call around the other pharmacies in the town and we got one with all we needed.

We're out of the woods, but we've a valley to traverse

We are now all set, we've just got to wait until September the 10th for Mattie’s next EEG. So far we've got lucky. From the initial shock and confusion of Monday through the battery of tests, and trying hard to get up to speed on something you know nothing about, and about which the doctors seem reluctant to explain to now. It is like stumbling out of a thicket of trees into the open. We can now see a path in front of us. It's across a valley, we can see the track for the next 10 days, but after that it vanishes.

Saturday Morning – 31st of August

I don’t think Ben knew what hit him – breakfast with the entire family around the table. It was great to have everyone back at home. Ben was all smiles, I think the last week has been tough on him too. It must have been weird for him. I know it was weird for us too.

Home at last! - Emma, Ben and Mattie enjoying breakfast together for the first time since Mattie was admitted to hospital.
Home at last! - Emma, Ben and Mattie enjoying breakfast together for the first time since Mattie was admitted to hospital.

Saturday Evening.

Emma and I have our fingers crossed that the steroids will kick in work well for Mattie, but as the doctors explained this is very subjective and each individual has a different reaction. We won't know until the EEG. There is a correlation between the EEG and the spasms, so we're still recording everyone he has - he had a big cluster tonight around bed time. I understand why the doctors are reluctant to explain the details to us; when the clusters hit they can be frightening for Mattie, but knowing what they are and their repercussions it also scares the crap out Emma and I.

Mattie has done great so far, as long as he stays well on the steroids his next battle is seeing how they have affected his EEG. And we won't know that until September 10th.

As we're now entering a longer stretch - fingers crossed we will not have anything major to report until the next EEG, I'll reduce the volume of emails for now. I'll be back in touch to let you know how the EEG goes, and Emma and I are still logging Mattie’s spasms.

A Very Big Thank You

Emma and I have been so very grateful to you all. Writing these notes has given us a way of structuring so much information, and so many things have happened that - at times it's been extremely confusing and to be frank, very frightening.

Your responses and encouragement have helped hugely. Emma and I are really very thankful to have such a great bunch of family and friends. Emma and I hope that any other parents dealing with Infantile Spasms who read these notes will get as much comfort from them as we did from you guys.

Thank you all!

Emma and I will set up an Infantile Spasms Crib Sheet on this blog with details on useful links and publications, other web sites, stories and information. We’ll try to add to this as we go along.

Infantile Spasms and Matthew (Part 2)

Tuesday 27th of August 2013 - 8:45pm, Temple Street Children’s Hospital

Mattie is a sleep. At last. It’s great to see him at peace. The last few hours, his normal bed time, have been hard. His last sleep was around 3pm, and the ward is very noisy around his normal bed time. It’s when he is tired that his spasms hit. They are particularly common just as he is waking from a deep sleep, or is restless and can't sleep. To top it all off the steroids he's been prescribed have started to take effect, the first impact has been his increased appetite - he's eaten loads and early. Then he started teething, poor we guy. His cheeks where flying off him the nurses have been fantastic, they are very observant and right to hand whenever you need them - they are so good it’s almost spooky. But they came over and gave him some calpol. That helped a lot.

As I’m sure you all know, Mattie was admitted to hospital following a meeting with a consultant yesterday. It took Emma and I by surprise. Mattie had been experiencing spasms, he’d throw is head forward. At first we thought it was just a muscle development thing, perhaps his neck and upper body had not developed enough to keep him upright for long? But when we started to notice his eye’s rolling in his head, just before the action took place we decided to get it checked out. Emma had recorded some of the spasms in her iPhone and was able to show it to the consultant. Within 3 hours a bed was found on a ward, Mattie was admitted, a letter sent to our family GP, an EEG performed, the results analysed and he’d been started on a course of steroids, with an MRI tentatively scheduled in a few days.

It caught Emma and I on the hop; I think we both half expected the consultant to tell us we were worrying over nothing.

Emma stayed with Matthew last night. Emma's sister collected Ben from crèche and I was home in time to do bedtime with Ben before swapping; Emma's sister baby sat and I was able to visit Emma and Mattie in hospital. Emma did the first night with Matthew and then we swapped this afternoon.

After Emma left Matthew woke almost immediately, typically – just as I’d left his bedside to visit the loo! He was grumpy when I got back and was in the middle of a spasm attack.

The spasms come in waves. We’re keeping a record of them on a log sheet for the ward. This helps to see if the steroids he’s on are having an effect. They normally last about 8 minutes, during which he’d have lurching like behaviour, throwing his head forward if sitting. When lying down he’ll kick is legs into the air. They can upset him and he’ll cry during them.

Trip to Dermatology

Matthew had a trip to the dermatology department. He’s suffering from eczema, always has done. But apparently skin abnormalities can be indicators of what’s wrong with him. We walked through the maze of corridors which is the hospital. They all seemed to be heated to the same temperature as any public swimming pool (roasting), with the exception of one room – the dermatology room.

The dermatology examination, which consisted of shining a UV light (Black light for the American’s – I think) over his skin in a dark cool room, revealed one thing; Mattie loves UV lights and cool dark rooms – he was almost asleep. Nothing untoward was found. He’s a follow on appointment in 6 months’ time just to check up on him and any possible changes.

While walking back the ward we passed the Temple Street School, it’s a full Department of Education school, currently shut for the summer, it opens next week. There is no escape from homework even when you are ill. Well at least Matthew has a couple of years yet before he has to worry about that.

Neurology Visit

One of the doctors from Neurology came down to visit and asked how he was doing. I had a bunch of questions. I wanted to know what the EEG showed, was there anything additional they could infer from it? The doctor said it showed increased electrical activity. That Mattie's brain wasn't returning to a normal rhythm at all, even without the seizures. They were looking to get that 'baseline' down to normal. The steroids would do that. I asked if it was epilepsy? The doctor said 'no' but it was in the same category. I asked if it was like the traditional version, with an electrical storm over the brain which then passes from one side of the brain to the other. The doctor said no. 'It’s very complicated',  - That was a very frustrating answer, I had to try to check my response. I know its complicated, I'm trying my best to understand it. I felt myself wishing there was some recommended reading on this.

The doctor went on to explain that based on what they'd seen in the EEG they didn't expect to see anything in the MRI, but wanted to do it rule anything else out. Finally the doctor tried to reassure me that they had seen a little girl recently who was 9 months old who suffered from the same condition. The little girl had reacted well to the steroids and now was basically normal.

Visit from all of Neurology

The Doctor in charge of Mattie's case came down to visit. Along with this doctor came every other doctor from Neurology I'd ever seen before.. Wow. The group descended on the bed. I'd just put Mattie down, hoping he'd sleep - obviously that wasn't going to happen now.

Matthew asleep in Temple Street Hospital
Matthew asleep in Temple Street Hospital

The Doctor asked if everything had been explained to me. I said yes, I think so, but there is a lot to take it - it was a shock to have Mattie admitted yesterday. I'd appreciate an explanation.

The Doctor explained again what was in the EEG. That this was typical of this type of condition. Almost classic. It's something they watch out for in this age range. The pattern it showed was fairly typical. He's smack bang in the middle of what they would expect for this condition. He's 100% on that. This Doctor said it was a form of epilepsy.

The Doctor said the plan is to try to control the spasms with steroids. They try to nip it in the bud at this early age, It is treated fairly aggressively. They are concerned that continuing to let them go on will have a long term effect on his development. The steroid treatment will last for 2 weeks. No conclusions will be reached before the end of the two week period. If it is controlled within two weeks and the steroids are working then they will look to wean him off them for a following couple of weeks. Then continue to monitor. There are a team of nurses and experts on hand who can help. This includes a telephone help line.

During the conversation The Doctor asked to see the videos we have of Matthew, unfortunately they are only Emma’s phone, not mine.

At this point I had an opportunity to ask a few questions.

Infantile Spasms & Long Term

I first asked about the long term impact. Is this a condition Mattie will have to live with for the rest of his life? - With on going treatment?

The Doctor: It's too early to tell for Mattie. That will become clear over the coming months. There are generalities which I can explain, but obviously you'd like to know what's going to happen with this chap? (Point’s at Mattie).

Me: 'Yes, I would. But the generalities would help - it would be good to understand the ball park - assuming the MRI doesn't show anything.'

The Doctor : Well there are children who go on to have learning difficulties, and need assistance, who we continue to see on a repeated basis as we go forward. We do see those cases.

There are children for whom the steroids don't work, and they have learning difficulties and need additional help.

There are children for whom the steroids work very well. They may have some slow development, and learning difficulties.

We see everything in between.

Infantile Spasms & Short Term

I was keen to understand, as much from a personal planning point of view, as anything else how long Matthew will be in hospital. The Doctor explained that Mattie will be in until Friday, They don't want to keep him in beyond the weekend. The Doctor is keeping him in to ensure an appointment for the MRI. In the past the steroids were taken via injection and we’d have to train the do parents to do the injection. But now the drugs are orally administrated mixture which can be taken at home. But access to in house facilities is quicker as someone on a ward; an MRI for an outpatient takes much longer. So if it means staying in hospital for an extra day to get the MRI then The Doctor recommend we stay.

The Doctor explained that the best hope is that Mattie takes to the steroids really well, the MRI shows nothing and that we get him home soon. The impact on him going forward and developing will only become clear in the coming months.

Our Personal Observations of Mattie

I’m not sure if the steroids are helping, maybe it’s too early to say, maybe I’m seeing more because now I know what to look for...