An Injection of Hope
Carol Burgess
Connor’s Mother

Connor who is six years old has been diagnosed with high functioning autism, attention deficit hyperactivity disorder (adhd) and speech and language problems. He has just had his third secretin injection and we thought you might like to read about his story thus far. Connor is our second son, so we had experience of the so called milestones children should reach. We had problems feeding Connor, he often had projectile vomiting and once he got so hydrated he spent time at our local hospital. He was always getting coughs and colds and so had more than his fair share of amoxile antibiotics. His walking was late, his talking was minimal so eventually our health visitor referred us to a speech therapist who in turn referred us to a paediatrician.

From the age of two until four, Connor had various developmental checks, blood tests, etc. Finally in June 1997, at the age of four, we got our first diagnosis of autism, and a year later (privately), an additional diagnosis of adhd. Then came the Ritalin for his adhd and although the Ritalin did help Connor concentrate and calm down, we thought there must be something else we could do to help him.
We had help with behaviour management techniques, speech and language, music therapy, occupational therapy but he was not making the progress we had hoped. By chance, we came across the gluten/diary free diets. We visited the Centre of Complementary Medicine in London (also Southampton) where we had food tolerance testing carried out on Connor – something which did not hurt a bit! Briefly, it works by a computer measuring biorhythms which cause an electrical change in the body. This test showed us that Connor could not tolerate anything with gluten (wheat) or dairy in it. To confirm this, we also had a urine test done by Dr Paul Shattock at the Autism Research Unit, University of Sunderland, at a cost of £50.

At about the same time, we saw Trevor Macdonald’s first programme about secretin which we found amazing. After much research on the internet and reading all about Billy Tommey we phoned for details from Dr O’Connell. Meanwhile, Connor had turned six (May 1999) and already his second mainstream school was not working out. He had spent four terms in our local primary school with full-time support but he really could not cope with 30 in his class even though he had some lessons on his own. So, we tried a smaller private school, again with full-time support, but this time only 12 in his class. Unfortunately, no progress was made. Our decision was that while we tried to find a suitable school we would try him on secretin. We knew we had to do something drastic because life at home was so stressful. Conner’s older brother Casey, aged 8, was suffering from the effects of Connor’s screaming, tantrums, loudness, lack of compliance and disruption.
After hours of researching, talking and discussing, we finally decided to go through with his first injection although, even the night before we nearly pulled out. The one or two people we had mentioned it to had been fairly negative and cautious, so we decided that we would tell people after the injection. We did not want these well meaning comments before we had tried it for ourselves.

So, in June this year, Connor had his first injection. I remember so well our nervousness and apprehension, especially when seeing all those other people in Dr O’Connell’s waiting room. The sense of comradeship and togetherness at us all coming together to try something controversial and unproven still sticks in my mind. Some people had travelled from Wales and here we were worrying about getting the train from North London. Connor ‘entertained’ the commuters on the train all the way!

For us, the very next day, Connor was a changed boy. It was Father’s Day and the first thing he said was ‘Happy Father’s day’ and gave Colin a big kiss and cuddle. Connor hadn’t liked this form of social contact before and needed prompting to even say ‘hello’ or ‘bye’. That same day, he played computer games with Casey who even remarked what a lovely boy Connor was. When the phone rang that same day he ran to answer it as he always tries to do but this time when I said not to touch he said, ‘OK mummy!’. I thought I was hearing things. Life continued like that for two weeks – compliance, niceness, affection in the form of hugs and kisses, co-operation and sharing. He slept longer in the mornings – usually he only had to hear one sound and he’d be awake but now we were having to wake him for school!

School reported that his last three weeks with them were the best he’d spent there. People were remarking how quieter he seemed.
Then he had a bit of a relapse, back to noisy screaming and losing his temper for a few days but it did not last long. We were so excited. We went back after six weeks for his second injection and Dr O’Connell told us that he improved by 39% on the infantile questionnaire. We were so pleased, although we had already witnessed the difference in him. We had shot video of him before the secretin and have videoed him since – the difference is unbelievable. We were included in Trevor MacDonald’s follow-up film about Billy Tommey’s progress shown in August 1999. We had a fun day being filmed while on holiday at my parents’ caravan in Kent. People who have seen the film have said to us that they never realised how difficult it was living with an autistic child, so I think the programme has helped raise the awareness of autism. Since then, we have decided to take Connor off his Ritalin drug because the secretin has helped him so much. We have also started a gluten free diet which I must admit I am not finding very easy at the moment. Connor has been remarkably tolerant of it, telling everyone who offers him food, ‘I am allergic to wheat so has that got wheat in?’ By the way, I have found out about the blood test available on the NHS (antigliadin test) to test for Coeliac which he is going to have done in about four weeks. So, he has to go back on wheat to accurately assess him. I will keep you posted on all of this.

Thanks to our local education authority, Connor has started a new school which opened for the first time in September: Hillingdon Manor school, formed by Anna and Sean Kennedy, parents of two autistic boys who could not find a suitable school for their children. At last, Connor is in an environment which understands autism and can help him to understand how his behaviour affects others. So, with the secretin, modified diet, behaviour modification programme and a new school we are really optimistic for the first time since we received his diagnosis of autism. We feel that as parents we all need to share information and experiences to one another so that we can keep on trying to help our son’s autism rather than just accepting that there is nothing we can do. Secretin is working for Connor but I certainly wish it were cheaper! Our local MP has kindly offered to write to the Minister for Health to enquire about receiving secretin on the NHS but I think we’re a long way off that yet!