Wednesday, 27 July 2011

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.

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 It’s such a shame that what appeared to be ‘wonder drugs’ for Chrissy had to be withdrawn.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.

Saturday, 23 July 2011

#Specialsaturday - telling it like it is right now

I started writing positive stuff about what my special child has taught me but we’ve been having a shit time with Chrissy. So instead I’m going against the grain by telling it how it is right now after 27 years of violent outbursts blighting our lives. Chrissy is with me, nagging ‘is it dinner later mummy?’ In her hand is a damp flannel where she has been rubbing at her bloody nose, injured during a screaming outburst. On my lap is a favourite T-shirt I bought Chrissy recently & a needle & thread. I am sewing up a hole that presumably resulted from an outburst – she literally rips off her clothes when she is distressed.

Chrissy started kicking off about dinner half an hour ago, screaming: “I want dinner!” over and over & tearing around the house throwing herself around the floor & self-harming. Now, she is sitting as quiet as a mouse next to me watching me type, battle scars decorating her hands & wrists. Next, she is squeezing me with one arm around my neck, and flapping and signing ‘yes’ with the other hand, asking: “Can I have dinner mummy? Say yes.” The unpredictable Jeckyll and Hyde nature of her behaviour is very hard to describe – and the emotional effects on those of us that have to deal with it are profound. Maybe that’s the downside of the empathy you need to support her by seeing the world through her eyes…

Friday, 15 July 2011

Autism & Saying No

'You are NOT going to be one of those autistic kids who does exactly as she pleases & disrupts the whole household!' I bellowed. Chrissy had been loudly demanding food all evening & had then gone rummaging through my larder. After dinner, she triumphantly claimed a pack of creamed coconut & a jar of peanut butter, then gathered the accoutrements of another meal around her. She has been very unsettled & could not accept that meal-time was over. I couldn't distract or divert her - she was obsessed with getting more food. When I removed the offending items & put them away Chrissy was furious, & took to the floor for the fourth time in two hours. Most of her outbursts this evening have been over not getting her own way. Again, we could see by the fresh bruises & abrasions on her body that it’s one of her difficult phases, not something that has only just come on. The lack of progress that has been made in changing these behaviours is depressing. I can't imagine a day that we will be able to take Chrissy out anywhere again but I have to stay optimistic. The meds changes have stalled for various reasons but I remain hopeful that there will be light at the end of that particular long dark tunnel.

Later on, this evening Chrissy gave me one of her sun-bursting-through-clouds smiles & I felt guilty that I'm not more saintly towards her when she only comes home once a week. Some weeks it's much easier to don a halo than others....

Wednesday, 13 July 2011

Saturday, 9 July 2011

Special Saturday - Music

Trying to think of a way to link my post to the theme of this week's Special Saturday made me realise that Chrissy doesn't enjoy music like she used to. A lively beat was irresistible to her & she had a great sense of rhythm. I can picture her now playing with her keyboard, her whole body responding rapturously to the beat. She's gained so much weight on her meds that she rarely dances now, & then, only for short bursts. She still has rhythm but it's sad that her enthusiasm for dancing & certain types of music has waned. Another bit of Chrissy on my wishlist for meds changes to give us back.

We've had a mixed evening with Chrissy. She started off calm but kicked off after one mouthful of dinner (which she spat out). I was not amused - there's nothing worse than carefully preparing a meal then having it disrupted for no rational reason! She calmed down after about 15 minutes & ate the lot quite happily. I wonder why food is such a trigger for 'behaviours' in people with autism...?

Tuesday, 5 July 2011

Does Autism get Worse with Age?

I was catching up with an old friend whose son has autism. She said his autistic traits have got worse with age & his life is empty & meaningless. He spends all day ripping up bits of paper & 'stimming' despite being in a specialised single service unit with lots of involvement from his family. Her story is depressing & rings alarm bells for me. Chrissy's autistic traits appear to have intensified with age & have become more entrenched, despite, like my friend’s son, receiving specialised services. I say ‘appear to’ because I’m not sure whether we unwittingly suppressed Chrissy’s autistic traits when she was a child by riding rough-shod over them! Because we never knew that she had autism then, we either dealt with her tantrums and challenging behaviour as naughtiness or reacted with bafflement.

Did specialised help come too late for Chrissy – and is it not specialised enough? Are her medications contributing to her autistic traits becoming more marked? Now that we surrender to the awesome power of her autism, does she feel less constrained and no longer need to ‘pretend to be normal?’ (If it’s the latter, the freedom to be herself doesn’t seem to be making her any happier.)

My research on the subject indicates that autism is not degenerative; children & adults with autism should continuously improve, especially if they receive specialised, individualised services. Maybe there are other factors at play – autism has many different causes and comes in many guises – Chrissy also has epilepsy and an underlying chromosome disorder. Undoubtedly, some children stay the same, get more frustrated as the years pass or deteriorate due to other contributory factors, but some do get better (& calmer) with age.

Friday, 1 July 2011

Special Saturday - My Special Needs Child is Amazing Because....

....she managed stay calm most of the evening.

Chrissy often struggles to stay calm for all sorts of reasons, including routine changes or transitions from one activity to another. This evening she allowed me to gently squeeze her hands & give her hugs to address her sensory needs (& because we both enjoy the physical contact). She had only one very short outburst while waiting for her dinner & for her stepdad to come home from work. She was able to tell me what colours were in the washing I was hanging out, & what foods we were preparing for our meal. She also managed to participate with food preparation. She only drove her sister a little bit crazy when she played DVD's on her computer when she was trying to sleep (she's got tonsilitis). She laughed with us as we watched 'Little Fockers' this evening, & settled in bed after only two turns of the pillow & one 'squaring' of her blanket. One of Chrissy's magical evenings :-)

"Special Saturday" was set up to spread awareness of the needs, feelings and accomplishments of children and adults with special needs or

Link to the Facebook group

Link to the original story of how special saturday came about

Link to Swan UK (Syndromes Without a Name)