On the 5th of July an MDT took place and the reduction of Quetiapine was agreed to commence.

On Saturday the 27th July I noticed Molly was spaced out, shaking all over from head to toe and walking very bizarre, pigeon toed, robotic and falling forward.

She was happy to see me and smiled all the way to mine. Her speech was slow but with a stammer.

We popped to see a friend as they had brought Molly a bracelet back from their holidays, from her face, I knew she saw what I saw and was visibly upset by Molly’s state. I took some videos throughout the weekend for evidence and my records, (always useful to show professional’s and to share with the Functional Psychiatry team in Leeds).

Molly is now on 200mg pm only. The question now is are these horrific side effect we see due the introduction of Aripiprazole or the reduction of Quetiapine?

I called Carleton Clinic on the 29th July for an urgent review, they called her in on Wednesday the 31st July, psychiatrist and LD nurse present, they saw what I saw and spent an hour observing, took her blood pressure and tested the rigidity of her limbs and the tremor and stammer were evident throughout the review. Reduce the aripiprazole from 10ml to 7.5ml was the recommendation.

Molly is still in pain, vomiting, generally after food or drink. This weekend on the 9th August I got a call to say Molly had been vomiting from 1.30pm until 3.30pm and thereafter for another 3 hours, I went up to see her as the staff thought we should call 111. I decided to bring her home. Molly was shattered so I bathed her and she was fast asleep by 8pm. I called 111 as she had not had her 6pm or 8pm medication. They advised to leave her resting and see how she was in the morning.

Saturday after a restless night Molly and I walked the dog, I noticed she had the strangest gaze, looking upwards and towards her right, she kept falling sideways – I was getting worried. This continued all day. At about 4.30pm Molly wanted to go home. On arrival I could see the staff noticing her gaze too.

Sunday at 6.45am I arrived at Molly’s house to try and get the Functional tests carried out for the Leeds team. Unfortunately it wasn’t possible today. I need a first thing urine collection after a 8 hour fast. Her bed was already wet and so we’ll try next weekend. We went for a dog walk and I could see her gazing coming back to normal, such a relief. I then thought this maybe a result of missing her current dosage of medication. Molly remained in pain and vomiting throughout the day yet again.

We have both moved to a new GP and thankfully they successfully took Mollys bloods which had been requested on 8th July and had been postponed several times by her previous GP. We don’t have time to wait around hence we took action and so far I am very pleased we did!

Today 12th August I spoke to a friend’s friend a retired psychiatrist about the eye gaze situation. She said “it’s Oculgyric Crisis (OGC) this is a rare, acute dystonic reaction involving the extraocular muscles. OGC is most commonly described as the involuntary upward deviation of both eyes. Note to self: drugs can trigger OGC, Aripiprazole could cause this or maybe Quetiapine but noted as rarely. It is not a new symptom but seen as a side effect of taking medication for long periods.

I called Carleton clinic today asked for a call back, psychiatrist involved in Molly’s care is away till next Monday advised to wait till she returns.

This is tough and the only option I have is to keep on keeping on…..

Luv C