Tag Archives: Occupational Health

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 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.