This is
Aoife's Story

This is a summary of Aoife's journey to being diagnosed with catatonia in Down syndrome, as relayed by her mother.  Aoife is 25 years old.

​

As early as 2016, when Aoife was about 18 years old, I noticed changes in Aoife. She had slowed down in her thinking, she had to stop and think about what word to say next.

 

Over time she lost what speech she had, slowed down in completing tasks, dressing etc, lost interest in activities she once enjoyed like swimming, bowls etc. She didn't respond to being spoken to and was very distant and unaware of what was going on around her.

 

She would have episodes of laughing for no apparent reason and crying for no apparent reason. Her sleep became disturbed and as time went on she would start to make movements, mainly lifting her arms and shaking her legs, so that she could not sleep at night and would only sleep in the morning when she was completely exhausted. She would also hold a magazine or other pamphlet in her hand and just stare at it, or stare at the same spot on the sun visor while driving.

 

She had been put on quetiapine and clonazepam, but these drugs did nothing to relieve her symptoms.

​

Prof. C. Doherty diagnosed her with catatonia in Down syndrome in the spring of 2021 and started her on lorazepam, which was gradually increased to 12 mg daily.

 

She started ECT on 21 November, 12 sessions. While she was on ECT her terrible movements and sleep improved greatly. However, as soon as the ECT stopped, she started to have severe movements again and her sleep was again disturbed.

 

Aoife started ECT again in spring '22 and continues to have it once a month, she's also on 10 mgs lorazepam daily, on low dose quetiapine on small doses of venlafaxine.

​

In the summer of '23 she started Cellcept, an immunosuppressant, because the psychiatrist thinks she might have some kind of autoimmune disease, although she has no physical signs of it. We have seen a very small change for the better in her since she started this. 

Aoife is now able to attend day services 3 days a week, something she couldn't do 3 years ago. She sleeps well, does not have severe movements, is more attuned to her surroundings, however she has not regained her speech, she only has one word now. She is much better than before she started the lorazepam and ECT but she is far from her old self. She enjoys some activities again but her concentration is quite short. We feel that if she is exposed to too much stimulation, some of her old symptoms will come back. And when she gets tired, she gets worse.