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

Mattie – Is he back to normal?

Tuesday 2nd October 2013

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

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

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

Slight Spasms

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

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

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

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

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

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

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

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

Wednesday 2nd October

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

The Bug Strikes…

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

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

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

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

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

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

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

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

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

Saturday 4th October

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

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

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

Sunday 6th October – More Spasms?

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

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

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

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.

Neurology

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.