Alistair’s CIMT Journey – The Discovery

Since Alistair had his stroke, Google has been both my best friend and my worst enemy. You know what they say about doctor Google. At one point my husband put a block on the terms “cerebral palsy” and “stroke” to try and curb my chronic Googling, which would leave me in a miserable state for weeks and months at a time, in the early days. All I wanted were answers and reassurance. I wanted to know what the effects would be, what would happen, that he would be ok. But in cases of neurological trauma, even the professionals can give no definite answers. Wait and see – I despise these words and I challenge anyone whose child has suffered a brain injury to “wait and see” with their sanity intact.

I started encouraging Alistair to use his left arm straight away by always placing toys to that side.

I don’t know what changed – me, probably, as well as Alistair – but Google became my coping mechanism and my best source of information (until we met our wonderful physio when he was 6 months old). Knowledge was power, and I knew that to best help my son, I needed to understand the condition, treatments and become paediatric physiotherapist and occupational therapist in one.

Even before we started seeing NHS therapists officially, I was doing sensory massage, stretches, body awareness exercises, strengthening exercises and encouraging the use of his left affected side – particularly his hand and arm – thanks to self-education on Google.

Constraint Induced Movement Therapy – CIMT

It was through Google that I discovered constraint induced movement therapy, or CIMT.

Now, for those as of yet unfamiliar with hemiplegia, you must remember that children (and adults) struggle to use their affected side – some may not even be aware that it is there due to compromised sensation. The result is that people with hemiplegia do not use that side effectively, or at all, and their hand in particular may remain in a tight closed fist, with the brain injury meaning it lacks the ability to do something as seemingly simple as opening it, never mind grasping with it or using it in any capacity. Children with hemiplegia generally become very dominant on their unaffected side (note please, I never say good or bad side – I hate that). It’s a vicious circle – they don’t use their affected hand, so the neural pathways don’t develop to help them use it. It is only through use that these pathways can begin to form, rerouting around the area of brain injury.

Alistair holds his left hand open, but it still reverts to a fist if he doing something strenuous, like climbing furniture!

I knew therefore that it was absolutely essential Alistair use his left hand as much as possible. I placed toys on his left side, stroked different textures against his skin, massaged and stimulated his hand as much as I could. When I came across CIMT it vindicated everything I was already doing. The principle of the treatment is to restrict the use of the dominant side by putting the arm and hand in a cast, to prompt continuous use in the affected side. Some people may think it sounds cruel, but I don’t think it’s cruel to strive to give your child the opportunity to meet their fullest potential.

I started off with a modified version of CIMT, gently holding down his right hand, and from the age of about 6 months I used a padded ski mitt to cover it for short periods, focusing on knocking down towers, batting and playing with his left hand to the best of his ability. Thankfully Alistair was still so young that it didn’t seem mean to him at all, just a normal part of play. The results have been wonderful and even now at 18 months he uses his left affected hand spontaneously and frequently, although his right is still very dominant and has significantly better function.

CIMT – the Research

Here is Alistair rocking his modified CIMT mitt. He doesn’t mind it, believe it or not.

It was the good results that we got from the modified CIMT that led me to pursue the full casting. This method is practiced in America and overseas, but not widely in the UK, and the awareness through much of the NHS as to the benefits doesn’t seem to be there. Good old Google did however find a private company in the UK who offered it as a therapy programme. The difficulty… The clinics were in Manchester and Liverpool, and were three weeks in duration, whereas we live in Kent. I put it to the back of mind, but it wouldn’t stay there. There seemed to be so many reasons why we shouldn’t do it, but they weren’t enough to override the best reason why we should – that I felt Alistair would significantly benefit from the treatment in such a way that it would improve the quality of the rest of his life. I hope I’m right. Let me tell you more…

Watching the CIMT clinic’s video case studies – along with others on YouTube – showed impressive results, but I’m the type that needs hard facts. I needed to see studies. Back to Google I went and I read every study that I could find. For those that are interested in looking for themselves, I found many here on CHASA (Children’s Hemiplegia and Stroke Association). These studies convinced me that CIMT could significantly benefit Alistair, however most of the medical professionals I saw weren’t enthusiastic. As I mentioned, CIMT isn’t widely practiced in the UK. There is awareness of the modified form using a mitt, but a full cast is rarely used and I had a paediatrician, occupational therapist and neurologist play it down as an option, although the latter admitted neuro-rehab wasn’t really her field. My son’s physio however, is American, and significantly had seen it done and vouched for the results. Not only for hand and arm use I might add, but in strengthening the shoulder and trunk, which ultimately would help with walking gait and weight shifting. His physio is an extremely experienced, qualified and knowledgeable paediatric specialist. I respect her enormously – more than anyone else – and her word and the studies I had read were enough for me to consider the other professionals as well-meaning, but less informed.

Some might say it was a bold (stupid?) decision to go against the feelings of so many professionals, but I was confident in the research that I had done. I felt – and feel – that CIMT will give Alistair significantly better function in his left hand in a short space of time. He will use it more often and with more success. His bi-manual use of both hands together (essential to effectively complete every day tasks, such as dressing, etc.) will be improved at an earlier age, allowing him to develop even further and more rapidly in his younger years – the most important time in brain development and when it can most effectively recover from its injury. Alistair already uses his hand so spontaneously and consistently despite its affected function. He tries so hard to use it, doesn’t get frustrated and doesn’t give up. He is a superstar, and if I can help give him the function to match his effort, we are onto a winner.

And the worst case scenario that it doesn’t work – we would be out of pocket, but I could look my son in the eyes when he was older, and tell him that I had done all that was within my power to do for him.

CIMT – the planning and logistics

Decided in principle, I had a phone consultation with the clinic and there were more obstacles to consider. The price was significant (although it is possible to apply elsewhere for funding, as well as fund privately), we would need accommodation for three weeks in Manchester or Liverpool on top of that, and a hotel stay didn’t appeal without home practicalities (such as cooking facilities and a washing machine). I also had work and my three year old daughter to consider (and her needs, although different and somewhat simpler than Alistair’s, are no less important to me).

Alistair gets away with murder, providing he is using his left – or both – hands!

But where there’s a will there’s a way (although I realise I’m more fortunate than many in our circumstances). My generous mother and grandmother offered to pay for the therapy between them. But when to do it? The earliest the clinic offered the therapy was from 18 months of age – that would be end of April/May 2016. Perfect. I was keen to do it as early as possible to give Alistair maximum function from a young age, when the brain is most malleable and able to “rewire”. May would be before Freya started school, and allow us to be home in time for her birthday. Suddenly everything was falling into place.

My husband and I have rented a 3 bedroom house for 3 weeks in Manchester through Air BnB, so we can cook and live as normal during the CIMT treatment. It’s a 25 minutes’ walk from one of the clinics. Returning to work after maternity leave, I carried over an extra two weeks of annual leave to help cover the time off (although I also considered unpaid ‘Parental Leave’); work have been very supportive. My daughter, Freya, will come with me to stay at the house, and my husband – who is self-employed – will stay as much as he can. Other family members are enlisted for help during our stay while he isn’t there. We’ve decided to do our best to make “a holiday” of it around Alistair’s treatment, and have found lots to do in the local area for Freya, while Alistair is with either myself or my husband for the 3 hours daily therapy at the clinic. Aside from the cast – which I think he’ll soon get used to – it’s going to be one, big therapy-play session for him!

It’s really happening!

Alistair had a face-to-face pre-assessment in January and will be reassessed before we start the casting. The 3 months between then and now, which seemed a long time to wait, has flown, and we’re gearing up to head up to Manchester now!

The purpose of this essay… Because I need to get my excitement and nervousness down in words. Because it might help someone looking into the same type of therapy. Because I need to record for myself the experience and results to (hopefully) come. Well done if you got to the end of this ramble! But this is only the beginning.

Alistair’s Story – Paediatric Stroke Awareness Month

It’s taken me about 17 months to be able to write these words openly. My baby had a stroke. Even now I can feel myself getting emotional as I write this, and yet we’re in a much better place than we were. It seems such a long time ago in some ways, and in others, not.

Hemiplegia was an alien word to me until then, but I’m getting ahead of myself.

Paediatric stroke

Like millions of other people out there, I suppose, I had never before considered that children and infants had strokes. In fact, even unborn babies can have strokes in the womb, or during birth. CHASA (Children’s Hemiplegia and Stroke Association) states that the risk of stroke from birth to age 19 is 5 per 100,000 children, while perinatal stroke occurs in 1 in every 2,800 live births. 60% of paediatric stroke survivors will go on to have neurological problems and, tragically, many children will die. Stroke is in the top causes of death in children up to the age of 19. That’s why when I think about what happened to us, and how differently things could have turned out I thank our lucky stars.

Alistair’s story

I’m telling Alistair’s story for several reasons, the first being that I am fiercely proud of my son, and I want him to be fiercely proud of himself. I want to shout his achievements from the rooftops, and you might be interested to hear of them. The second is perhaps our journey can help others going through something similar and provide some small iota of comfort. And the third, maybe it’ll help my headspace.

Alistair in the PICU.

Alistair was 6 weeks old when he started getting sick after feeds. I’m talking, bringing back all of his milk. He had a heavy cold that was doing the rounds and was a little grumpy. That evening I noticed he was breathing fast. I sat counting his breaths per minute as I called 111. They had me look at his chest – I could see him “pulling in” at his rib cage, working hard to breathe. I took him to A&E and he was admitted to the HDU with a case of bronchiolitis. Although poorly, he was a contented patient and there was no indication that he wouldn’t be home and well in a week or so.

About 36 hours after he was first admitted, he coughed. And that was it, it changed. The mucus that he had dislodged from his little lungs was enough to block his even smaller airway. I watched anxiously as he draw gasping breaths, the colour drained from his face, and the nurse and doctor played with the settings on his vent. When that didn’t help, the nurse announced an emergency crash call. I knew what those words meant in my head, but my body was no longer under my own control and I passively let the nurse draw me back as 20-strong team of paediatric professionals entered the room in an instant and whipped the curtain around his bed. I could tell you every word I screamed at the nurse I remember it so vividly, but I won’t, because I have never told anyone, even my husband.

The short version of a long story is that Alistair was stabilised, but couldn’t manage to breathe for himself. He was intubated (placed on a ventilator to breathe for him) and transferred by ambulance to a paediatric intensive care unit in London, where after 4 days he was extubated and moved to a regular ward. I was thrilled and the world seemed “right” again, until the following morning when he had two small seizure episodes. Investigations started straight away – lumber puncture, antibiotics, CT scan of his brain. They saw something on the latter, but weren’t sure what. To get a more detailed picture they performed an MRI scan, and then a day or two later an MRA scan. I cried as the radiographer handed him back to me and said “good luck”. I should have known then, but even though a realist by nature, I didn’t.

The MRI revealed that he had a stroke – a small one on both sides, deep within his brain in the area that controlled movement. Subsequent tests and medical investigations have pointed to his severe bronchiolitis and subsequent pneumonia as the likely cause, as he has no other risk factors for stroke and they can tell that it occurred post birth, as opposed to in utero. Despite knowing about the stroke, his neurologist was unable to make any diagnosis. His tone and movement were typical for his age, and we just had to wait and see if any delays presented in his development as he grew older. This was torture in itself and I have never known a darker time than those months.

At our follow up appointment when he was 5 months old, after a second investigative MRI scan, we discussed with the neurologist the intermittent stiffness and movement in his left arm. She was able to make a diagnosis of left dystonic hemiplegia – a neurological condition causing weakness and movement problems in his left side – similar to an adult stroke victim, falling under the cerebral palsy umbrella of conditions.

Here we are now. Alistair is 18 months and doing wonderfully. He sat at 7.5 months, crawled at 8.5 and walked at 13.5 – 2 weeks later than his neurotypical sister. This is not typical for hemiplegia and I would hate to downplay in your minds the delays and struggles of those children and adults affected. For Alistair – although not obvious at first – the effects of hemiplegia are there, particularly in the use of his left arm and hand. We do physiotherapy and occupational therapy (focusing on arm and hand control) daily through play, and have had exceptional care through our physiotherapist, who has been a godsend to Alistair and I, keeping me sane at my lowest. No small feat.

Alistair surprised everyone with full weight-bearing on both arms, and crawled at 8.5 months old!

You see, children are better able than adults to deal with the effects of a stroke. Their brains are still developing, and they’re capable – with vital early intervention of therapy services– to rewire around the area of damage. Even children with significant damage to their brain can make a remarkable recovery. Likewise, even a small area of damage can have very significant effects. There is no correlation and often no prediction of how the child will be affected long term. The effects will never disappear – although lifelong therapy will improve them – and Alistair will always retain a weakness down one side of his body. However his hemiplegia is mild and – thankfully – we know from the small and focal area of his brain affected that he will suffer no cognitive ill effects.

Alistair walking and looking the dude in his Christmas tree onesie. One day he will kill me for this.

Other children are not so lucky – hemiplegia can be very profound and varied, depending on what part of the brain is affected. Some children may have no use at all an affected limb, use walking frames or wheelchairs and have significant developmental delays in gross and fine motor skills. Some effects are less visible but no less severe (and perhaps worse for being misunderstood) – significant learning difficulties, epilepsy, feeding and speech problems, sensory processing disorders, emotional and behavioural issues, extreme fatigue, memory problems, difficulties regulating their body temperature, problems with sight, hearing or the understanding of language… I could go on and on.

The more I have researched hemiplegia and seen how it affects Alistair, the more I realise we need to be grateful for how much he was spared.

These two love each other so much. I don’t doubt that it’s Freya that spurs Alistair on to do new and exciting things.

I would take it from him in an instant if I could, but as I cannot, I will do all I can instead to lessen how it affects his life and help him look at himself, and life, with a positive outlook. I have become a physiotherapist, occupational therapist, speech therapist and play therapist in one. I have spent countless hours between crying and researching to eventually come out fighting. The true fight though has been his, and his perseverance, resilience, cheerfulness and pure strength and determination have made him the remarkable little boy he is, and is growing to be. If you’d like to share this journey with us, then please do. This is what life gave, but it will be whatever we make it.