The impact of lockdown on people with hypothalamic hamartoma (HH)—a siblings perspective

Anna Kane is 17 years old and has witnessed first hand the impact the COVID-19 lockdown has had on her brother Charlie who has the hypothalamic hamartoma. This is Anna's perspective on what has been a challenging time for her brother and their family and how they have learnt new ways to work together to support Charlie


Charlie reading with his family (Anna pictured far right)

A hypothalamic hamartoma is a rare condition unknown to many. To summarise briefly; it is a benign tumour located in the hypothalamus, a part of the brain controlling homeostasis and the release of hormones. At present, little is known of the cause but it is likely to be due to non-hereditary gene mutations, thus making it harder to diagnose.


My brother, Charlie, was not diagnosed with HH until the age of eight, having been misdiagnosed as being a ‘slow developer,’ and then as autistic. Charlie is now 19 and had it not been for his diagnosis, he would be in a detrimental position. Having gone through gamma knife surgery twice (once in 2009 and again in 2014), experiencing many different school environments, and being encouraged to read by a family that values literature, Charlie has made profound social and academic progress.


However, the effects of lockdown together with the way in which the government has dealt with people like Charlie has been, in short—dismal.

HH has many symptoms though not all may apply to a particular sufferer. Charlie’s symptoms consist primarily of gelastic seizures (random outbursts of laughter) seemingly triggered by both excitement and anxiety. Prior to lockdown, Charlie’s other noticeable tics included shaking his head from side to side, making noises, and waving his hands in front of his face.


During the isolation period, not only did the occurrence and acuteness of these tics increase, he picked up more. These include the random listing of numbers, the repetition of specific phrases, and pausing in the middle of an everyday task like closing a car door.


The explanation? Potentially a bump in the road, more likely a deprivation of social interaction.

A typical characteristic of people like Charlie on the autism spectrum, is a dependency on routine. Charlie’s school life plays a fundamental part in his routine; it is a time for him to study but most importantly a time to engage with like-minded people his age. Unlike Charlie, when we had to go into isolation at home, I was able to attend online lessons at my school, as was the case for so many non-special needs schools.


To say that Charlie had no intellectual stimulus from his school would be erroneous; he was provided with numerous Maths and English comprehension worksheets. However, when attending school Charlie was provided with work experience twice a week—in lockdown he missed this important developmental input and stimulus. He also, crucially, was deprived of the company of his school friends. This did not serve Charlie well, as I am sure was the case for other HH sufferers.


It is not my intention to dwell on negatives, however, but to try to give advice from my experience living with and helping my brother since the effects of pandemic became apparent. Charlie and I have always been close; therefore I understand him in a way that might help others with HH relatives know how to suppress and address some of the tics and seizures that may have developed during Covid-19 isolation measures. I understand that each HH patient is different and some of the symptoms may not apply, but if this could provide any assistance at all I will be pleased.


Reading is especially helpful. Charlie suffers quite profound anxiety, which often manifests itself in laughter. This anxiety is brought on by his persistent desire for approval from everyone, and reassurance that no one is ‘cross’ with him. My family loves literature as it provides a doorway into the world of ideas and fantasy. By introducing Charlie to Usborne’s Ladybird editions of some of the greatest novels—his favourites including the Count of Monte Cristo, Gulliver’s Travels, and Oliver Twist—he has had the opportunity to discuss and take pride in his reading.


Although the gelastic fits are inevitable, Charlie’s are subdued somewhat by reading, purely because it is a distraction. During isolation Charlie’s ability to read independently began to falter; I would often hear him muttering non-sequiturs and discover that he had not been reading at all. Charlie, aware of this problem, would ask either me or others in my family to sit with him while he read so as to assert a degree of control over his tics. Although it requires a lot of patience, it is definitely worth it to keep reading as an outlet; not only does it reduce the frequency and number of fits, it is also intellectually stimulating.


Another way to prevent some of the seizures and to compensate for the lack of social interaction was to spend more time together as a family, completing various challenges we set ourselves. Lockdown provided an unusual situation where we were together all the time. Getting Charlie involved in everyday chores such as cooking would help control the seizures while also providing him with a new life skill and interest: Charlie now informs me that he wants to be a chef when he’s older at least once a day.


Charlie has a rather unpredictable sense of humour, which we got to see more of when playing board games, having meals together, etc. When left to his own devices, Charlie used to go off and listen to music which, on the face of it, seems perfectly reasonable. However, he would have it on a full volume right next to his ears while waving his head about wildly, and it became increasingly difficult to communicate with him while he was doing this. While music remains an important part of Charlie’s life, having him listen to it less frequently, as he is preoccupied with the family, has made a notable impact. Sudoku and crosswords have also been beneficial. The repetitive nature of sudoku and Charlie’s love of numbers make it an enjoyable activity for him. He finds crosswords slightly more challenging but perhaps more satisfying; they have certainly been improving his linguistic cognition and have given him a sense of pride and increased self-confidence.


Regular exercise also continues to put Charlie’s mind at ease. As well as taking the dog for daily walks, Charlie likes to complete 100 sit-ups and 80 press-ups a day – putting the rest of us to shame. We often joke that if the chef route doesn’t work out for Charlie, he should look into being a darts commentator since when he reaches a multiple of ten when counting aloud his press-ups, the resemblance is uncanny. As we gradually come out of lockdown and the pools re-open, swimming is therapeutic too. As a result of the hamartoma, many of Charlie’s senses are heightened; he loves the feeling of water and could spend hours in a pool. Similarly, when in the car, Charlie enjoys the tactile feeling of the wind on his hands and face. The benefit of the swimming is that he is exercising while also having his mind put at ease, making him less anxious and therefore less prone to gelastic fits.


Charlie is about to start college. He will see new and old faces and hopefully make new friendships. The social aspect of life is crucial as has been proved by the last few months of social isolation. When lockdown started, Charlie’s levels of anxiety increased significantly causing him to develop new tics.


However, finding new ways to manage these has improved his well-being as well as our relationship.

I hope that some of the ways in which we have tried to help Charlie can also help other HH patients.



Written by Anna Kane


To find out more about HH please visit Hope for Hypothalamic Hamartomas

www.hopeforhh.org



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