Medication and Autism

Chrissy has been having an unsettled couple of weeks for no obvious reason. I was concerned to see that two Paracetamol three times a day have been added to the long list of medications she's on. Since she's been in hospital there has been an increase in the number of prescribed medications rather than the decrease I'd hoped for. She has been on Movicol, a medication for constipation, for months now. Chrissy has never suffered from constipation at home, but medical professionals have advised us that she has shown symptoms on the ward &, like many of their patients, becomes very irritable when she needs a poo, & Movicol is an exceptionally gentle laxative without unpleasant side-effects. I have asked several times how much longer she needs to be on it but have been advised that it should continue for the forseeable future as stopping it would make her more irritable/cause discomfort. I want further reassurance that this is not a case of medication overuse & will mention my misgivings again.

Chrissy is also on Epilim & Topiramate for epilepsy but Epilim has been increased for withdrawal of Topiramate; her psychiatrist & neurologist don't like giving Topiramate to people with learning disabilities as it can worsen behaviour problems & increase confusion. She is on Quetiapine (an antipsychotic) too. It was started after she had nasty side-effects from Risperidone, the first-line antipsychotic given to treat irritability & behaviour problems in people with autism. Quetiapine initially increased Chrissy's irritability & triggered a period of unmanageably violent & self-injurious behaviour, & I see no evidence of any benefit now. It is on the list of drugs to be reduced or withdrawn. Then Prozac was introduced, which seemed to take the edge off - Prozac had worked well for her in the past alongside Naltrexone, an opiate-blocker that had eliminated Chrissy's self-injurious behaviour. The two together had dramatically transformed Chrissy's life when she was 14. We had been able to take her out & about anywhere, even on holiday to Disneyland (Now I can't even take her to the village shop.) but, ultimately, after several years, this medication regime had led to a life-threatening plunge in platelet levels. Doctors had withdrawn both drugs & only Prozac has been re-introduced, albeit at a lower level than she had been on previously. A further complicating factor is that Epilim can reduce platelet count in susceptible people too. The platelet problem may have been caused by cumulative effects of these drugs over several years. Chrissy also takes Cerazette, the contraceptive pill, as she finds the mess of periods & PMT unbearable, & fish oils, a natural supplement for brain health.

I worry about interactions between medications, as well as their individual side-effects & the fact that Chrissy has a history of adverse drug reactions. Chrissy certainly needs medication - I doubt that 'in the raw' she would survive because her epilepsy naturally occurs in clusters with very little recovery between each seizure. I'm thankful that anti-epileptic drugs ease her epilepsy – they don't work for everyone. As a child, before mood stabilising medications were tried, Chrissy's outbursts also occurred in clusters & could continue for hours, & exhaust her. I am loathe for Chrissy to have medications that aren’t absolutely necessary, as any parent would be. Before I’d learned that Chrissy had a chromosome disorder, I’d hoped dietary interventions could offer an alternative, reducing or even obviating, the need for anything but anti-epileptic medication, but the two we've tried - the gluten-free/casein-free diet & the few foods diet (under Great Ormond Street Hospital's supervision when she was little) had had no effect on Chrissy's behaviour. It goes without saying that behavioural intervention plans were the first approach & have been used for years.

Will we ever manage to stabilise Chrissy's behaviour again without chemically coshing her, or causing life-threatening physical side-effects? Am I chasing rainbows……?

The sensory overload of a hospital appointment

Chrissy appears to have no concept of time but she somehow senses if she hasn't been home for over a week. Last weekend I was away so didn't bring her home as usual. When I phoned the hospital to finalise details of today's appointment with Chrissy's neurologist, a nurse told me that on Saturday, she had donned her hat, coat & gloves & demanded to come home. When her request hadn't been granted she'd become very distressed. So, feeling guilty, I decided to bring her home today after the neurology appointment, instead.

The appointment itself went smoothly. Chrissy veered off into a shop inside the hospital for a diet coke & briefly interrogated a tiny child she was curious about but we didn't have to wait for long to be seen. The neurologist was well-informed & thorough, & I was happy with the meds change she advised. The two nurses that came with us brought the car as close as they could to the entrance so Chrissy didn't have to walk very far with the wind blowing her face - something that makes her react as if she's under attack. She moaned a bit & full-on sobbed at one point but all in all she coped very well.

The reaction came later back at home!

As usual I'd organised everything beforehand so that I could give Chrissy my full attention - I'd even pre-cooked tonight's dinner. Unfortunately, Chrissy wanted her sister's computer even though she now has her own laptop. After screaming & throwing herself & other objects around for 10 minutes she eventually calmed down & played on her laptop at the kitchen table. Another outburst kicked off when her lunch came - meal times & food are often triggers. Eventually, when I added an egg & tomato sauce to her tuna sandwiches, she settled down. Simple solutions but rarely obvious ones....