From the initial diagnosis of Matthew's infantile spasms right through to providing support for his eye rolls post discharge the guys at Temple Street Children's Hospital have been amazing. The time has come were we can now give a little something back, and perhaps help other children and their families that are suffering from neurological conditions.
It's happened at least three times since discharge, but Mattie had had the odd eye role. At first we thought he was just messing with us, or perhaps we'd imagined it, and actually he was just playing. However I caught the second one on camera.
We were reading the Gruffalo book, and Mattie being a huge fan was loving every minute of it. His speech had come on fantastically and he was acting all super cute, pointing out the characters and what they were up to. I decided to a video to send to friends and relatives and it was just as I was recording that he had an eye roll. Thankfully I had caught it on camera. I was able to re-watch it with Emma and make sure that it wasn't me imagining it.
Emma got in touch with the neurology department at temple street, and even though we were discharged they reviewed our footage and got back to us. They diagnosed these new eye rolls as a "benign tonic upgaze" which happens with all children on occasion. So nothing to worry about, although if they increase in frequency, intensity or duration we are to give them a call. It was great to get that support even though Mattie wasn't actually a patient.
Giving Something Back
We thought it would be great to give something back to the hospital and in particular the neurology department. So Emma has signed up for one of Ireland's largest army assault style runs, it's called Hell and Back. - The clue really is in the name. It would be great if you could consider supporting Emma and Temple Street by sponsoring her via this link here: http://www.mycharity.ie/event/emma_woodss_event/
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.
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...
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.
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.
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
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.
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!
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.
“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.
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.
Matthew and Ben are both sound asleep upstairs. Emma is recovering from a night spent in chair by drinking gallons of tea and catching up on the Great British Bake Off... I've just spent the last 5 minutes making baby bottles, and shaking them in the style of Tom Cruise from cocktail - no, there is no video of this, sorry. But next time...
...All seems right with the world. It's great to have Matthew home....
Under pressure - pushing down on me...
It was a very long night, but Matthew is now on an additional medication for his blood pressure, which appears to be under control. Emma spent the night camping in a hospital chair beside Matthew, she didn't get much sleep. It would be fair to say that Emma is currently doing a great Zombie impression. But it all seems to have paid off. Matthew is doing much better.
I got text messages from Emma at every blood pressure reading this morning. It was a series of steadily decreasing figures - all great news. His blood pressure continued to decrease to a relatively normal figure today.
Like wise the Doppler exam on his heart came back perfect! - Everything is spot on.
The neurology team kept Mattie in until this afternoon to ensure that his blood pressure had stabilised. To get there though his whole prescription has been modified.
In addition to giving Mattie the blood pressure drug, the doctors have also accelerated his Prednisolone (steroid) weaning process. A side effect of Prednisolone is increased blood pressure, and Matthew has been on a lot of it. To give you some context, as an adult if we were prescribed a steroid it would be about 15mg per day. Matthew has been taking 40mg per day!
Hospitals are full of sick people - who knew?!
Another side effect of Prednisolone is a weakened immune system. Matthew will be able to catch bugs much more easily while he's taking the drug. As one of the doctors outlined to Emma today, being in a room full of sick people while on this drug is not a good thing - we're delighted to have Mattie back home.
Accelerate the Spasm Treatment
The goal of the steroids had been to try to address the Infantile Spasms. They haven't completely worked - we have seen a reduction on both the severity and frequency, but the spasms are still there. With their withdrawal the neurology team have increased Mattie's dose of Vigabatrin, the anti-epilepsy drug.
Wow the "Cranky Baby Week" really has come to an end! - Emma reported that she couldn't get Matthew to relax and sleep last night he was all smiles and giggles, playing and using his hands. - That's something Emma and I are watching very closely. Infantile Spasms can produce developmental issues so we're constantly watching and noting his progress. This is why both Emma and I were delighted to have a playful non-sleeping baby.
Mattie's good mood seems to have carried through to today - he has been great craic today. Long may this continue!
Possible Spasm Reduction ???
In addition to all of this; the types of spasms that Mattie has been having have also changed over the last day. Instead of the full body jerk he originally presented with, we now have slight twitches, small jumps, and the odd weird eye movement. Over all these are less aggressive form of spasm - we're recording them all same though - just in case.
A tooth! - A tooth! My Kingdom for a tooth on steroids!
It arrived! The tooth fairy has delivered. We have a tooth! - Just a small one at the front, but it is here. Wow did Mattie earn that tooth. He really seems relieved to see it arrive too..
All in all
It's been a good day so far (touch wood).. let's hope this continues through to the weekend....
The house feels empty and quite. Ben is in bed sleeping and I'm typing away in the study. No one else is here. Matthew is back in hospital and Emma is by his side. All down to a routine check-up, that wasn't that routine, and a small factor which started at his check-up last week...
Tuesday 10th of September (Check-up Last Week)
During Mattie’s check-up he had his blood pressure taken. It was 118/70, high and the nurse and doctor seemed concerned. It appeared higher than normal in the hospital when he was last admitted however this time it didn't seem much of a concern, so little of a concern in fact that I didn't mention it in my last note.
Spike of Spasms
Confusingly the start of the Vigabatrin seems to have resulted in Mattie having more Spasms, not less.
The Vigabatrin comes in sachets of 500mg, we’ve got to give him two doses of 200mg. Tuesday night we got our dilution calculations wrong and gave him 20% (1 fifth) and not 40% (2 fifths) we should have done. We corrected that for the next dose on Wednesday.
At the same time that we introduced the Vigabatrin we reduced the steroids. The increasing in spasms has gotten Emma and I both quite concerned; the steroid reduction wasn't significant enough to have resulted in the rise of spasms, so why has it happened?
Cranky Baby Week
The change in medication also heralded the start of "Cranky Baby Week". Ohh my word... Mattie would cry and scream almost constantly. As soon as we put him down he would start to cry. The crying sometimes marked the start of spasm cluster. With Ben, as I guess with a lot of babies, once we knew he was OK and that nothing was wrong we'd let him cry it out. But for Mattie with his spasms, we felt that that really wasn't fair.
To top it all off Matthew has continued to teeth like mad, with bright flushed cheeks, and his fingers almost constantly wedged into his mouth. Dummies last about 5 minutes before being spat out and the crying returns.
The crankiness continued from Wednesday all the way through to Saturday morning - none stop. Emma is a rock star and kept a brave face through it all but it really wasn't fun. - This really was Teething on Steroids.
Worried About Spasms
By Thursday afternoon Emma and I had grown very concerned about the increase in spasms, so much so that we decided to get in touch with the hospital.
Spasms Return in Intensity
Up to this point we had seen a drop in the spasms. The strong, intense spasms we saw before going to the hospital had vanished; they had been reduced to a spasm which looked more like a little startle, and we’re getting hard to spot. That was until the new treatment started.
By 10 am on Thursday morning we had noticed several individual (not clusters) of spasms, more than we saw before the change in medication. They were "full on" intense spasms, like the ones we saw before his medication started.
Could this rise in spasms be related to the Vigabatrin? Is it too early to tell?
11:21 AM - We’re worried enough to call Temple Street.
I got through to a registrar who works for another lead doctor, not the head of neurology we had been seeing. I explained what we’ve seen so far and the doctor on the phone explained that, that was not what they would expect to see. She is going to talk to someone on our doctor’s team. The doctor on the phone took down my telephone number, and thanked me for calling to let them know. Now we’ve just got to wait and see.
Got a call from a registrar from our normal doctor’s team in Temple Street. The long and short of it is that the new drug won’t cause the spasms. It seems that the steroids were not as effective as we hoped. The presence of spasms now suggests that the spike is coincidental. The reduction in the steroids so far isn’t enough to have caused the spasms to return either.
Trying to Introduce Normality
The spasms and grumpiness continued right through Friday and only let up a little on Saturday when we did a family trip to the zoo. It was great to get out of the house and try to do something normal as a family.
I think that Independently Emma and I had reached the same point. For me it came while washing and sterilising bottles, I looked down into the sink and realised I wasn't sterilising bottles any more - I was sterilising the syringes we use to give Mattie his medication. It was a very depressing though, I never thought I'd be putting more syringes in the steriliser than baby bottles. I found this upsetting. After feeling sorry for myself for at least a good 30 minutes I decided to give myself a good, mental kick up the arse. Being upset about it wasn't going to help anyone. With Ben's birthday coming up there was plenty to look forward to.
The trip to the zoo was a welcome reminder of normality. The trip also appears to have been a watershed moment for Mattie; his grumpiness seemed to reduce after this.
Small reductions in spasms and grumpiness continued over the weekend and by the time Mattie arrived at the hospital on Monday morning he was all smiles and giggles.
Emma and I were both looking forward to chatting with someone face to face about Mattie's spike in spasms and what has been causing it.
Monday 16th September
When Emma arrived at Template Street for the check-up she discovered that the consultant we are seeing was out on vacation and the registrar that we had been seeing was also out.
Emma and Mattie were only in for a check-up by one of the nurses so that wasn't a big deal. During the check-up the nurse took Mattie's blood pressure 4 times. It was high, very high - at one point 140/90. To put that in context a baby's systolic BP (the top figure) should be (usually) somewhere between 70 - 90. The nurse asked Emma to stay close to the hospital while she got hold of a doctor to check out Mattie’s stats.
Emma had planned to go out shopping for Ben's birthday in town anyway, so this worked well. The nurse said that they may want to see Mattie again after she had spoken to a doctor.
After about a week of a really, extremely cranky baby Mattie seemed to be in a much better mood today. He was playing and “goo-ing”.
The nurse explained to Emma that a side effect of the steroid (Prednisolone) is agitation and restlessness (cranky baby). But this side effect doesn’t hit straight away, it arrives after about two weeks of starting the medication. Apparently it catches a lot of parents by surprise. It’s nice to see that it has eased off a little.
Emma called me over lunch
I've just heard back from the hospital. They want me to bring Mattie back in. The nurse said that we should be prepared - they might need to admit him for observation while his blood pressure is so high, They want to see if his blood pressure as settled since we've been out and about.
After returning to the hospital Mattie had his blood pressure checked again, it was still high, too high. Mattie was admitted and given medication to bring his blood pressure back down to normal. Additionally the doctors are looking and speeding up weaning process to get him off the Prednisolone (steroids) more quickly than we had originally expected. Then, just to confirm everything is OK Mattie is scheduled for a Doppler exam on his heart tomorrow. The Doppler exam should tell us if there has been any damage to his heart from the high blood pressure, of if, there is anything wrong with the blood flow which might be causing the higher blood pressure. The doctor's aren't expecting to find anything. I hope they don't either...
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 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
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.
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.
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.
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.
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.
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...