Tag Archives: MRI

Photo of @emmawoods and Mattie - both smiling after the MRI scan

Preliminary MRI Results – Mattie and Infantile Spasms (Part 4)

Catching up

I am trying to translate all my notes and recollections from last week into readable blog posts for you all as quickly as possible.

Being Cautious

Everyone likes to hope for the best, but a recent experience, which I don’t feel I can share publically here, made Emma and I vow to each other to not count our chickens before they hatch, no matter what result we get from a test, we’ll wait to see the final report.

Thursday 29th August 2013

It is late on the ward. I’m taking the night watch, and Emma should be asleep at home and recovering from doing three nights back to back. She isn’t. I know this as my phone is buzzing with images and SMSs – I even got an SMS which said “I’m off to bed”. Two minutes later it’s followed by a photo of Mattie Emma taken earlier in the day. We’re both tentatively relieved by the news we received today.

Thursday 29th August – 9am

I spoke to our crèche today. Mattie was due to start with the crèche at the end of September as Emma is due to return to work. This unfortunately overlaps with his steroid treatment, and assuming the best case outcome (he’ll be home and better with no spasms) he’ll be starting a little later. I needed to check if our crèche will take a baby with epilepsy, I know that not all do. Even if he’s better, there is a chance that he’ll have another spasm, and they’d need to be prepared for that.

Our crèche is also changing hands. It’s the same crèche Mattie’s brother Ben goes to, so we’ve known it now for over a year. The owner is retiring and she’s selling on the crèche. I spoke to one of the assistants at the crèche who said there was no problem with a delay in starting, but she didn’t know about taking on babies with epilepsy. We’d have to wait and speak to the new owner.

In other news, which I’ve not mentioned yet – Emma got called up for jury duty in October, the letter arrived on Monday. Epic timing. Maybe, unlike when we were burgled, we could claim for that on the home insurance?

Thursday 29th August – 10:45am

The phone rings, it’s Emma; Mattie is out of the MRI. Everything went well. Mattie was sedated for the imaging. He moved once or twice, but they got everything they needed. Now comes the big long wait to see the doctor in charge of Mattie’s case and getting the results. – I’ve nothing to report yet.

I spoke to my boss at work, who has been great. I cancelled my work trip to the UK next week. I don’t think, even if everything goes really well, that I would be giving anyone 100%.

Thursday 29th August – 3:30pm

I arrive on to the ward, just in time to see the doctor who is in charge of Mattie’s case leave. Emma quickly updates me on what was said. The MRI showed nothing which would be causing the Infantile Spasms he is experiencing. It may show something else. But we won’t know until the final results are provided. These are due at some point tomorrow I think. The good news is that we’re on track to head home tomorrow. Something we’re all looking forward to.

Mattie will be returning to the hospital every Monday for the foreseeable future for a check-up. Initially this is to gauge the impact of the steroids. It can affect blood sugar and if there is type 2 diabetes in the family (there is) it increases the risk, blood pressure and of course his immune system. The original plan had been to have the public health nurse from Balbriggan check on us at home, but they don’t have the equipment to take a babies blood pressure. So instead we’ll need to report back to the neurology department here in Temple Street. Emma was thankful for this as it also means that each week we’ll have the opportunity to check in on any developments we see with Matthew, and ask questions of the neurology team which the public health nurse wouldn’t be able to help us with.

The doctor explained that the steroid dosage he is on at the moment is very high, so high that some pharmacies would question it, even going so far as to ask about mal-practice. But this very high dosage is based on research which indicates that it helps. It also explains why the dosage is just for two weeks and then tails off with a four week ramp down. There is no guarantee it will help. The doctor explained that the process of finding the right drug combination for Matthew could take months or even years to get right. In the mean time we can only hope that he doesn’t regress.

The good news is that Mattie has a lot going for him. He is healthy, he’s developed normally up to this point. These are good portents. We’ve got more work to go, but our starting place is much better than many others.

After talking to Emma, I felt that it was obvious that the doctor had not given Mattie’s MRI a clean bill of health yet. Emma recalled that the doctor had said that (I’m obviously paraphrasing a second hand quote) … other neurologist may see that certain areas of the brain that might not be as they should be, but when I looked at it there was nothing on it which would be causing the severe spasms he is experiencing. . .

Thursday 29th August – 9:45pm

The ward is quiet, but a new baby on the ward has just woken and got scared. Her parents had just left for a bite to eat and she was alone. The nurses have called back the parents and are doing their best to settle the little one. Mattie stirs, but appears to be remaining asleep – which is good. Obviously my typing beside him isn’t waking him up. The nurse comes over and attaches the blood oxygen monitor to his toe. This too fails to wake him.

Mattie in “Good Form”

Mattie has been in good form when awake. Emma told me she got smiles and giggles from him which was fantastic. In fact the images which have just arrived on my phone show a fantastic smile from both of them:

Photo of @emmawoods and Mattie - both smiling after the MRI scan

Mattie and Emma – all smiles after the MRI

The clusters of spasms are still happening

Right now however it is good to see him sleep so well. He woke 45 minutes ago and had another cluster of spasms, which lasted about 8 minutes, but wasn’t has violent as they have been. Compared to the beginning of the week they seem to be changing. He’s having just one isolated spasm at times, and what feel like longer gaps until a full on cluster of spasms strikes. The steroids should have kicked in by now. The doctor explained that they will look at him again in two weeks. They are treating the EEG not the spasms. The changing nature of the spasms could indicate a change in the EEG pattern, but we will not know until Mattie’s next EEG – and that’s going to happen a week on Tuesday (September 10th). In the meantime all we can do is hope. Fingers crossed that over the next week the seizures wrap up – I sense that we really should be seeing something like that by now. But I don’t know. . . I’m no expert. . .

This is most definitely a marathon, not a sprint no matter how affective the drugs have been.

Good Signs

What we have seen today are smiles, and more smiles from Mattie in one day than we’ve seen in a long long time. That too could just be a side effect of the steroids, but it is very pleasant to see.

Sharing our learning and experiences

Both Emma and I, and you guys reading these missives have learnt so much over the last couple of days; new phrases and terminology, new friends, and other parents. We’ve had the reality checks – even if we got (or get) the most negative news, that we have ultimately been extremely lucky. We’ve come so far from the confusion and shock of Monday. I’d like in my way to do something to help other parents who will find themselves in this position too. Catching the spasms early is so very important, and they are so easy to confusion with other ailments. Perhaps we could share some of the videos of Mattie’s Spasms and the (edited) contents of our notes on line? – Anything really that others can stumble across and that will help them.

Tomorrow

Tomorrow morning Matthew has an appointment with an optometrist. According to my own research the condition has is also linked to limited vision, or Cortical Visual Impairment. Basically there is nothing wrong with the eyes physically, an issue with the brain is impairing the comprehension and affectively the meaning of the images the eye is capturing. – This sounds like what my father; a stroke survivor is currently suffering from.

Googling “Infantile Spasms and Optometry” (I know I shouldn’t, but I avoided the crap and stayed with the academic papers on it) suggests that CVI is very common among children with Mattie’s condition, and rather depressingly the prognosis for those children’s vision is also not as good as other children. If he has CVI – then it may improve, but he’ll never have the full vision most of us enjoy. Fingers crossed…

After the optometrist appointment, assuming the official MRI results don’t show anything, and the vision tests go well, then tomorrow Mattie will be able to return home to us. Now that’s a Friday I’m really looking forward to – I just wish I could remove all the “if”s from the last sentence.

The ward is quiet now. The only sounds are my typing, the occasional footsteps from the nurses as they do their rounds, and of course the deep breathing coming out of Mattie as he sleeps.

Matthew trying to sleep in hospital

The “Mummy Card”, Mattie and Infantile Spasms (Part 3)

Wednesday 28th August 2013 – 10:25pm, Home.

Emma is once again with Mattie. We got news today that his MRI is scheduled for tomorrow morning. As a young baby this will mean sedating him, to do this he needs an empty tummy.

Apparently the low quantity of the sedative they use has one of two affects, it will either put him to sleep, or it will have the opposite affect and make him go hyper and a little wacky. To give the sedative its best shot at working Mattie should be tired too. So the plan for the morning is to wake Mattie at around 3:40am, so he can have a bottle before the four hour cut off before sedatives. He will then have to be up for the day 5:30 / 6am. His MRI is around 8, but the first, preliminary and verbal results won’t be available until tomorrow afternoon. The final results should come through after that.

Mattie was in a much better mood today, we got smiles and giggles from him, and at least the nurses were not taking blood samples from him today, they did that yesterday.

I had agreed with Emma that I would do a night time hospital stay with Matthew, but when we got the news that the MRI would be first thing tomorrow morning Emma, in her own words “played the Mummy card” and decided to stay. I honestly can’t blame her.

Infantile Spasms

Mattie has “Infantile Spasms”. It is labelled a catastrophic neurological condition. In the majority of cases it causes mental impairment. Most children will not develop at the expected rate, and will go on to have issues in later life. Catching it early, treating it before any regression in development makes a huge difference to the eventual outlook. What Mattie has going for him is that:

  • It was caught early (6 months is relatively early)
  • His development appears to be more or less on track; Emma says the last few weeks appear to be a bit slower
  • The dermatology scan was normal and for all intents and purposes he is a healthy 6 month old

The Growing Neurology Team

The Neurology team at Temple Street is bigger than we’d realised. Along with the doctors we’ve met so far this week there are also social workers and nurses. Today we were introduced to both.

Neurological Social Worker

We met with one of the social workers; it is their job to help us to adjust to the new reality of Mattie’s condition. As Mattie has a long term condition he qualifies for some additional state funding for his treatment, we’ve bunch of paperwork to complete for this. The social worker also took some time out to ask us how we were feeling, and coping with it all. I appreciated this; it was nice to be honest and frank with someone, and just explain what Emma and I were feeling at the time.

Emma and I both realise we ask questions about Mattie’s prognosis or outlook that it’s impossible for the doctors to predict at this stage. But knowing the condition and the data about it would really help us – as non-medical people – in understanding what we are all up against.

Emma said “We’re both engineers, we like the facts that the figures, we can deal with the uncertainty, just tell us”. The phrase “I’m an engineer” seemed to strike a bit of fear with the social worker replied with “Oh god. OHhh..kay”. Emma went on to explain that she works on and builds medical equipment, and while not neurology equipment, getting up to speed with the condition Mattie has certainly isn’t in a challenge – just tell us. I’m not sure if it was an approach they see that often. The social worker explained that each doctor has their own style and that some of them can be rather brutally honest. I think the honest truth is that Emma and I actually found that refreshing, and comforting in a weird way.

Finally the social worker recommended that we avoid Google for information as it wasn’t always reliable, and tended to be rather pessimistic. – I think, especially for Emma that this advice had arrived a little too late.

Neurology Nurse

Directly after chatting to the social worker we walked from the ward up to the neurology department to talk to one of the nurses. This being the maze of old buildings which is Temple Street we needed a guide to get us there. Even the signage inside the hospital reminds you of the older Irish road signs; ‘Neurology is that way’ points a sign. Following its direction you reach a junction, with no more signs for Neurology. It’s more a general guidance than anything you can actually navigate by.

One of the nurses met us at Neurology and we sat in a private, side room for a chat. Mattie was with us and on the way up to Neurology he started having a spasm. It was a bad one. When they hit, he can cry out. Emma and I have taken to holding him to comfort him and his whole body rocks with the spasms. He’ll hold your hand and either through spasm or reflex he grips you so very hard when they come. Afterwards, when they are really bad he’ll cry. Yesterday I tried to put him down on his cot when one hit. Immediately after one hit him he looked at me with such fear and panic in his eyes, that the only thing I could do is pick him up and hold him, try to sooth him through it. This was exactly what Emma was doing as we sat today talking to the Neurology Nurse.

Emboldened by our conversation with social worker, Emma’s opening gambit was an explanation of our backgrounds. The “I’m an engineer” line had roughly the same effect on the nurse as it did on the social worker. “Ohhh God.”. We started out by asking form background information on Mattie’s condition; can you give us some recommended reading?

The nurses’ first response was – Whatever you do, don’t Google it. (whoops too late).

My recollected and paraphrased conversation with the nurse follows:

Us: So do you have any recommended reading we could do? – Is there a book?

Nurse: No. There is no book. The research is still evolving.

Us: Do you have anything we could read? – If we were going to start out researching this condition where would I start?

Nurse: Erm, Googling “Infantile Spasms for parents” (giggle).. (pause) Well I do have this, which I got from Google; Understanding Infantile Spasms

The Understanding Infantile Spasms link is one Emma had already found, I’ve subsequently read it too. It’s pretty good, and doesn’t take long to fly through. – I’d recommend it if you were interested.

The nurse did tell us that the condition “Infantile Spasms” used to be referred to as “West Syndrome”

What the EEG showed

The nurse mentioned that the EEG gives them so much information, so I asked what did it actually show?

Mattie has Infantile Spasms. The old name for this is West Syndrome. It is diagnosed by an EEG. Not just the physical presence of the spasms. If the EEG shows a “hypsarrhythmia” – then that is Infantile Spasms. Mattie’s EEG on Monday showed a modified hypsarrhythmia pattern. I asked in what way was it modified, was it more aggressive, or less? – She didn’t know. Just that it was modified.

Prolonged presence of hypsarrhythmia will cause developmental delays and cognitive development issues. The purpose of the MRI is to ensure that there is no underlying physical issue for Matthew’s hypsarrhythmia. In 30% of cases no underlying cause is identified, this is known as a cryptogenic case. From the EEG the neurological team seem hopeful that the MRI will not show anything, hence boosting the chances of a successful outcome for Matthew.

Side effects of the drugs: Steroids and Immunosuppressants

Mattie is on a very large dose of Steroids. They do have some side effects. He’s going to each a bucket load more, he’ll put on weight, his tummy will be upset and he’ll be grumpy. More importantly it can affect blood pressure and if there is diabetes in the family (which there is, from my side ) then it can trigger issues there too. A more immediate concern is the impact to Mattie’s immune system – in short it will take an absolute hammering. We’ve to avoid anyone with a cough / cold / dodgy tummy / chicken-pox etc. Basically anything we would have let Ben just deal with, we can’t with Mattie. If he develops anything like that we need to take him to the GP straight away or take him to A&E in Temple Street.

The 6 weeks run straight over and into Emma’s return from maternity leave, which we may need to extend. It also raised a question for us; will our crèche actually accept a baby with this form of epilepsy?

Matthew trying to sleep in hospital

Matthew trying to sleep in hospital

Mattie will be on the steroids for 6 weeks, 2 weeks of aggressive dosage then 4 weeks to wean him of them. His entire system will be hooked on them and basically stopping the steroids directly will affect his whole metabolism. It wouldn’t be a good thing at all.

Assuming that the steroids don’t work – there is an internationally agreed list of drugs which are then attempted, one at a time and at varying levels of intensity. With all possible level of intensity attempted before moving to a new drug. – This can be a long process.

Treatment – assuming no root cause

The key to treating infantile spasms is to treat the EEG. If the EEG returns to normal then spasms should also go and he’ll return to normal. In the mean time we’ll be doing a bucket load of EEGs.

If on the very rare chance that the Steroids do work first time, and if the MRI comes back clear and if his blood tests come back OK, then once the six week course of drugs has completed Mattie could go on almost normally with no additional treatment required. He will have continual monitoring however as a precaution. – But there are a lot of “if”s in that statement.

With all of the above comes such a huge sense of disbelieve. It’s hard to believe that Mattie could be so ill – he just looks physically so well. But he’s in Temple street for a reason, and while the potent ‘so far so good’ stands, and with the neurology team and everyone writing and reading this rooting for him, the published odds are not so good. It’s hard to imagine, and even harder to articulate, but if you were putting money on him to come out all clear, you’d probably lose it.

Tomorrow is going to be a long, hard tough day. The signs so far are good. But I know Emma and I are trying hard not to count our chickens yet. We’ll be waiting for the final MRI results first.

PS: We’re no experts; a small reminder

We’re not experts in Infantile Spasms, we’re learning. If you work in this field, or have been through this before and believe that some of the information in any of these stories is not completely accurate, then please – leave a comment and let me know. I’d only be too happy to correct.