28/12/2024

My last post was October so here’s an update on Molly:

Since Quetiapine was down titrated Molly’s level of sedation and awareness has improved significantly. It is clear that this was having quite a sedative effect at the higher doses. On review of the Cytochrome P450 genetic studies we can see that Molly is a CYP2D6 intermediate metaboliser and a CYPSA5 poor metabolizer. This would indicate she is a poor metaboliser of both Aripiprazole and Quetiapine which fits with the now clinical picture (something we would never have know if we had not carried out the tests suggested by the private Functional Psychiatric team in Leeds). We have seen Molly have significant side effects at relatively low doses including oculogyric crisis at around 10mg of Aripiprazole. There were extrapyramidal side effects when she was on 500mg of Quetiapine and we have seen a reduction in sedation as this has reduced. In summary Molly is more sensitive to antipsychotics medication as she doesn’t metabolise them down as quickly. It is also fair to consider that Bipolar depression is also associated with winter months for some people. One other thing to note is that she had a FIGIu abnormal result which could indicate a Folate deficiency. Molly had her bloods taken on 23rd December and we are currently awaiting the results. Having never heard of FIFIu I went on google and this is what I found:

Formiminoglutamate (FIGLU) results can indicate a number of conditions, including:

• Formiminoglutamic acidemia An inherited disorder that causes elevated levels of FIGLU in the urine. The severity of the disorder depends on the type of mutation in the FTCD gene, with mild cases causing minor developmental delays and severe cases causing profound intellectual disabilities. 
• Folate deficiencyHigh levels of FIGLU in the urine can indicate a deficiency in folic acid, a B vitamin that’s important for preventing birth defects and supporting childhood development. Other factors that can contribute to high FIGLU levels include alcohol consumption, pregnancy, and oral contraceptive use. Symptoms of high FIGLU include anemia, fatigue, and elevated homocysteine. 

So how is Molly in herself ? things have been positive in many ways, she has been accessing her day services more and staying there for longer periods. He mood has been either very elated or low with settled periods. She is more vocal, she can be funny and have a good laugh but she can also express unhappiness and even says at times “I hate my life”. . This saddens me and brings another aspect of concern, all I want is for her to be happy. My thoughts are that with less sedations she now has ‘feelings’, her autism is more apparent and has possibly been masked at times due to being over medicated. Life for Molly is a struggle at the best of times, Christmas is especially hard, life stops as we know it, changes to her routine are challenging and can also bring challenging behaviours. It can be overwhelming for a neurotypical person so imagine an autistic persons overwhelm. During overwhelm she is overly disassociating by being glued to her iPad for hours on end.

Molly went back earlier than planned this Christmas due her agitation, restlessness and her wish to return to Mountview.

We had plans to eat out tonight with family however on arrival to collet Molly she asked me to leave, “go away I am not coming with you never again”. I waited outside in the car to give her time to process the situation as she can generally change her mind – she didn’t….. so I drove away.

The other night I watched a short documentary on Netflix about a non verbal autistic young girl, she learnt to use a letter board and found her voice, in her words she spelled out “hardship evades joy, we don’t get to choose how to express how we feel, we experience loneliness and we are left with our feelings alone, I am different but I am here”.

We are not out of the woods yet, I am trying to remain hopeful that things can still improve, Molly will be seen by Dr Anderson her Consultant Psychiatrist in Newcastle on the 13th February 2025. I will also be checking in with the functional psychiatrist Dr Pratima Singh in the new year.

I want to add that I remain unconvinced at this time about her diagnosis of Bipolar, I heard someone say “everything we are told is a probability until it is absolute, we can go to the medical world but we don’t have to hand ourselves over to them” for me the jury is still out.

All the best to you.

Now let me see……

Luv C x