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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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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 in Emma's arms

Mattie’s Spasms Return

It was about a week after Mattie’s last check-up. I was back home, my travelling temporarily suspended. We were in the middle of bath time, and Ben was still splashing about in the water. Mattie had already been been picked up and dried off. I was sheltering from a storm of splashing about when Emma poked her head into the bathroom, she had Mattie in her arms. “I just saw another one” she said. That is when we knew that the spasms had returned.

Spotting Trouble

We’d had such a good check-up, to have them return so soon was upsetting. Just seeing one spasm isn’t so bad – they are hard to spot at the moment, and the guidance we got from the hospital had been to keep an eye out for spasms which cluster, and particularly so around tired times – waking up, or just about to sleep.

We left it a few days, watching and waiting and hoping that we wouldn’t see any more, but we did. Within two days of originally spotting the spasm Emma had called the hospital.

Thinking Pragmatically

Matthew’s medication is calculated based on a formula, he is given x milligrams of Sabril (Vigabatrin) per kilogram of his body weight. Emma and I came to the conclusion that when Mattie grows, which all babies do, his dosage effectively reduces; he gets the same x milligrams of Sabril (Vigabatrin), but his body weight has increased. So it is necessary to keep an eye on the medication and to make adjustments as he grows. Given Mattie’s recent, very successful check-up we believed that it couldn’t be anything too worrying. But still it is hard to tell.

EEG Request

Mattie has not had an EEG in months.

The spasms Mattie suffers from are just a side effect of the increased electrical activity in his brain. The plan, as described to us by the doctor, is to treat the symptom in the hope that should it go away, the underlying condition, the electrical activity will also have reduced. You really wouldn’t think of using this in an engineering world and it seems odd to both Emma and I. It is even more odd when you realised that the spasms can be so subtle that they are hard to determine.

We felt that getting an EEG would help. It would give us some confidence that the medication was working, or if the spasms had returned, some measure of how ineffective the medication had become.

We were told that EEGs are only carried out when it is felt that it will answer a question. The original plan had been to not do another EEG until next year. But given our concern, we really wanted one. So when Emma called the hospital she explained our request, and the reasons why. Consequently, we were able to get Mattie booked in for one in just a couple of days time. At the same time we all agreed to up Matthew’s dosage of Sabril (Vigabatrin).

That evening we increased Mattie’s dosage from 800mg of Vigabatrin to 1000mg per day. It normally takes a couple of days for the impact of any changes in dosage to be visible, and sure enough, after a couple of days Mattie’s spasms vanished. As a precaution we planned to up his dosage to 1400mg per day.

News from the Crèche

A couple of days after we initially increased his dosage, Emma arrived home with the two boys from crèche and said “The carers in the crèche seem really happy with Mattie. I even got a comment that ‘he really seems to have come alive’”. It was great to have a third party confirm what we had noticed at home. With the increase in dosage Mattie really seemed to be a bit more alert, and he was into everything, picking things up and throwing them about. It really seemed like the increase dosage had taken effect in such a great way.

Business Trip

I really haven’t had that many work trips this year, however two seem to come almost back to back. As a result, I was out of the country during Mattie’s appointment.

The Appointment

In addition to the hastily arranged EEG Mattie had an appointment with the physiotherapy and occupational therapy nurses. Starting at 8am it was going to be a very busy day.

Mattie was up early. Emma woke him at 5 am for the trip into hospital. The EEG is conducted when Mattie is asleep. The hospital is about 40 minutes from our house and Mattie was bound to sleep in the car, then wake all ‘bright eyed and bushy tailed’. But Emma had a most cunning plan; to arrive in early and wake him in the car, give him a bottle and play with him, basically try to knacker him out before his appointment. The plan worked. One very tired baby fell fast asleep during his EEG. Unusually towards the end of the EEG, when Mattie was awake and still hooked up to the sensors the nurse administering it started shining lights into Mattie’s eyes. It didn’t seem to phase him. We didn’t hear why they were doing this, but I assume it wa s because for some children the spasms can be triggered by flashing lights.

Unfortunately we wouldn’t hear more for another two to three weeks, until the results of the EEG were shared with us.

Occupational Therapist & Physiotherapist Update

In contrast with the wait for the EEG results, we got the results from the Physiotherapist and the Occupational Therapist instantly: Great Progress.

In stark contrast to the last time Matthew visited he was now almost sitting up by himself – he was able to do it for a couple of minutes before getting tired. His “tummy time” work had also improved considerable.

The Occupational Therapist was impressed by his new found motor skills – he picked up a Cheerio with no trouble, he was passing things between hands, pinching and grasping everything within sight, all the things they were looking for at his first appointment.

Community Health Worker Check-up

I’m sure many parents who have two children do the same thing; compare how the youngest is doing with how the eldest developed. Of course you try not to, because every baby is different, but it is almost impossible not to and particularly when the youngest baby has a condition which might affect their development. So it was extremely reassuring when the community health worker came to visit.

In Ireland a community health worker will frequently check up on new born children and their families, they help provide some initial contact for parents. The community health workers also measure and track babies development, and during our latest visit Mattie was weighed, measured and recorded. At 80 cm in length (about 31 & 1/2 inches) Mattie charted at over the 100 percentile for babies his age. I think he’s going to be a tall chap. The community health worker also provided us with some feedback on how Mattie is doing. She told us not to worry too much about the fact that Mattie wasn’t sitting up by himself all the time, many babies his age can’t do that.

Mattie at the Disney Store for the first time

Mattie’s Check Up Results

Tuesday 5th November

I’d just sat down at the meeting, the first speaker had stood and was about to start talking when my phone buzzed.

I’m away from home, in Israel attending a meeting for work while Emma and Mattie are back in hospital in Dublin for Mattie’s check up. Waiting for news, when the phone buzzed I grabbed it eagerly.

The Check Up Results are In

Emma had just arrived at hospital and had texted to give me an update:

"His genetic screening came back clear - it's official :)"

This was great news. Infantile spasms can be caused by a genetic disorder. The hospital had taken a blood sample from Mattie when he was first admitted to check for this. It takes a long time to run the relevant tests. We had only just got the results back – and it was great news! It means that Mattie is officially categorised as “idiopathic”; subset of all infantile spasm suffers who happen to have a great prognosis.

30 minutes later, after Emma and Mattie had seen the Doctor, the news was even better:

"Our boy is amazing! :) they are delighted with him :) aren't concerned about the eye flutters only said if we see it in clusters or out of waking that we should be worried :) see them in 3 months and an EEG in the middle :)"

It speaks for itself really! We are delighted. He’s not out of the woods, he’s still on his medication and we have to watch him. But it does mean that the medication seems to be working! – we’ve still got to watch him just in case, but it does give us so much reassurance that his development is ok.

… Now I’m pretty sure there is a meeting going on ….

The Disney Expression

After the appointment at the hospital Emma took Mattie to the Disney store in Dublin for the very first time, his expression is brilliant:

Mattie at the Disney Store for the first time

Mattie at the Disney Store for the first time

Mattie’s Checkup is Coming

Saturday November 2nd

I should be packing bags for a work trip which starts tomorrow (Sunday) morning. Next week, when I’m away, Mattie will be returning to the hospital for a check up. Thoughts of this have trumped my ponderous packing.

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