Enjoying life: Chrissy in 2003 with her sister Alex

After years of suffering, your child is given a 'wonder drug' that transforms her life - then it is snatched away because it could kill her. Over the next seven years different alternatives are tried but nothing else helps. What do you do? Do you try it again, under close medical supervision and make the most of the quality time it gives your child - or do you dismiss it as too risky?

This is what happened to Chrissy with Naltrexone.

In previous posts I've spoken in more detail about how low-dose Naltrexone stopped Chrissy's self-injurious outbursts, and why it was discontinued. The following information from Autism Research Institute explains the physiology. It's important to not that when self-injury is associated with a biochemical abnormality, there may be little or no relationship between the person's physical/social environment and self-injury. Thus, the behaviour may occur in various settings and around different people but may occur less frequently during situations in which the person's behaviour is incompatible with self-injury, such as eating, playing, and working on a task.

Here, I'm more interested in exploring our dilemma over Naltrexone, which has divided opinion between some of Chrissy's medical specialists and I. Those that have done their research and/or seen its effects consider it to be a very safe drug but, some of them are wary prescribing it off-label. Naltrexone isn't a drug that is closely linked to thrombocytopenia but Chrissy has a history of rare and paradoxical side-effects from medication.

She was on three different drugs when thrombocytopenia was diagnosed, one of which was Epilim, an antiepileptic drug that she's been on since childhood that has proved the most effective at controlling her seizures with minimal side-effects. Naltrexone and Prozac were introduced together during drug trials when Chrissy was 14 in an attempt to quell unexplained self-injurious outbursts that were escalating in frequency and severity. The combination of the two was unusual and I don't know where the suggestion originated. Seven years of behavioural stability followed during which Chrissy was able to go on holiday abroad and enjoy activities in the community. Then when she was 21 Naltrexone and Prozac were withdrawn together because by the time her thrombocytopenia was detected it was a medical emergency. Her platelets reverted to normal levels within 48 hours so her doctors concluded that the thrombocytopenia was caused by a combination of Prozac and Naltrexone. I have

Epilim was continued but the dose was halved about a year later when Chrissy's platelets dropped slightly again. This shows that at higher doses Epilim alone affected platelet levels.

Three years later Prozac was re-introduced, albeit at half the previous dose. There was an improvement - not life-changing but enough to work out that if Chrissy wasn't taking it things would be even worse. There have been no further concerns over her blood count, which is checked routinely.

So Chrissy is now on two of the three drugs, albeit at lower doses, that she was taking during her thrombocytopenia episode. Do we assume then that Naltrexone alone was the culprit or was it a cumulative effect of all three drugs?

The quality of life question came up last week. Framing it was the fact that Chrissy had enjoyed seven good years on Naltrexone. Now her blood counts are fine do we risk re-introducing it under close medical supervision to see if she can enjoy another long period of relative stability? Of course there are finer points to consider, ie, could Prozac be swapped with an alternative anti-depressant; is there an alternative opiate-blocking treatment to Naltrexone? Both these options would mean more drug trials......


I am a SWAN UK (Syndromes without a Name) blogger

The Opiate-Excess Theory & Naltrexone

On Tuesday I had an emotional meeting with Chrissy’s psychiatrist and psychologist. My main concerns were that progress Chrissy has made in hospital has plateaued and that her self-injurious behaviour is worse than ever. I have described this behaviour in previous posts so won’t go into details again here. The following link gives excellent information on self-injury, covering biochemical causes that we believe are the predominant causes of Chrissy’s self-harm.

http://www.autism.com/ind_self-injurious_behavior_treat.asp

When Chrissy was 14, she had been prescribed low-dose Naltrexone, an opioid-blocker normally used in higher doses for people with drug and alcohol addictions. Some people with learning disabilities, including autism, may gain a ‘high’ from self-harming as the body releases endorphins, which bind to the same receptors as heroin and morphine. Naltrexone removes the ‘rush’ generated by self-injury, so there is no longer anything to gain from it. Then, Chrissy’s doctor had been very enthusiastic about Naltrexone – an added benefit was that side-effects were thought to be minor and only occur in about 10 per cent of people.

After the introduction of Naltrexone Chrissy’s outbursts became shorter with minimal self-harm. Two years later, a different medical team, who had no other patients on Naltrexone, gradually withdrew it to see if it really was having beneficial effects. Chrissy’s self-harm escalated dramatically & when Naltrexone was re-introduced the self-harm and screaming outbursts reduced significantly again.

Five years later, Chrissy’s platelet count dropped dramatically and she was taken off Naltrexone and Prozac – as they were thought to have caused this rare adverse effect over time. It’s such a shame that what appeared to be ‘wonder drugs’ for Chrissy had to be withdrawn. The self-injurious behaviour and prolonged outbursts came back with a vengeance and no effective substitute has been found since. We’d already tried the gluten and casein free diet as these proteins, mainly found in wheat and dairy products, can also have an opioid excess effect on susceptible individuals. The diet had made no difference to Chrissy’s behaviour and, again, adverse effects had meant we’d had to discontinue it – she became anorexic.

Now, we are in the hands of Chrissy’s medical team. We’re not looking for miracle cures – just for Chrissy to get her life back.