Update on Robbie’s Health – Batten Disease Awareness Day 2021

Robbie’s eyesight has deteriorated fast and now, at the age of 8, he has very little useful sight left. He only has peripheral vision. Robbie relies on his cane for navigation, reads braille and uses devices in the kitchen such the talking scales and drink level indicator.

We have noticed a massive change in his behaviours. He has become very hyperactive and struggles to concentrate, he is like a coiled spring. He can also have sudden aggressive outbursts that don’t seem to be triggered by anything. Robbie’s levels of anxiety are increasing and he has developed worries of things that didn’t bother him in the past. One of these is loud noise, especially in busy places, he holds my hand tighter, sometimes at school he wears ear defenders to cut out classroom noise.

In February this year Robbie had is first tonic-clonic seizure whilst at school. He was in the playground and luckily his TA was there to catch him. He was taken to hospital via ambulance as his recovery was slow. Five weeks later he had his second seizure. This time he was at home in his bedroom. It took hold whilst he was sitting on his bed and it made him fall backwards off his bed. This seizure lasted just under 5 minutes. His recovery was slow and it left him very scared, it took a while for him to recognise us. 

We made the decision to start medication to manage/ prevent seizures. As with but all medications there is a list of possible complications and with epilepsy medication, the patient can suffer with behaviour changes. With Robbie’s behaviour already at a level that we are struggling to control we asked for the choice of medication to take this into consideration.

Robbie has started taking Lamotrigine. Each week the doses increase until it reaches his final dose. On the second week of the medication Robbie had his third seizure whilst he was asleep. We were alerted by the sleep monitoring system and we were able to be by his side quickly.

Since that third seizure, Robbie has not had a tonic-clonic seizure but he has had what appears to be focal seizures. He will complain of being really hot, then cold, he will go clammy, pale and will feel very sick. These have lasted for about a minute with recovery within five to ten minutes.

Despite all these new challenge’s that Robbie is facing he does not let them get in the way of living a happy life. He continues to ride his bike in the garden and play football at home. He now has started drumming lessons with the support from The Amber Trust. He practises most days and he has a natural rhythm. He has lots of good friends who adapt their games so he can join in and now he is making new friends at Cubs.

Robbie Playing the drums

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