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Matthew - Born 1994 Dx Autism - Improved+

Matthew was born on his due date 22nd August, 1994.   Whilst pregnant with Matthew I suffered from chronic sinusitis and was prescribed with penicillin and painkillers.  I ate tuna fish everyday throughout the nine months thinking I would be giving my baby a good start in life.  I suffered from itching all over my body towards the latter stages of the pregnancy. 

 

The delivery was fairly straightforward.  However, Matthew was born with a crackly chest, clicky hip and eye infection.  He was also jaundiced and had baby acne.  From about ten days old the unexplained high temperatures began in ernest.   We were advised to give calpol and were then given numerous prescriptions for antibiotics.   He was hospitalised with a severe chest infection at three months old

 

 

 

Matthew Aged 7 Months

This was later described as a viral infection and the doctors said he would probably suffer with asthma, as he got older.  Despite is health problems and obvious weak immune system; Matthew received all his childhood vaccines.

 

Matthew's development was different to his brothers.  Adam was way ahead on all his milestones, especially language.  He was inquisitive and really social.  Matthew was much quieter and content to play by himself.  By the age of seven months he would happily sit in a bouncer and watch a whole episode of a Disney video.  He did have very good eye contact and everyone, including my health visitor commented on what a happy baby he was.

 

 

11 months old

Matthew met most of his milestones; however learning to walk was a hair-raising experience as he was on his toes the whole time. 

 

On his first birthday I noticed that he had some odd behaviours.  I remember seeing him grouping all the food on his plate and thinking it was a bit 'autistic'. 

 

Also he had but a few basic words, which he used sparingly.  Mama, nah.   He would do some actions to nursery rhymes and would get people up to join in with ring roses.

 

We became concerned at around 20 months when his speech was not moving on at all.  By his second birthday I was seriously worried.  I contacted my health visitor and got a referral to the Paediatric consultant at the CDC.  

 

After a detailed developmental history of Matthew he was diagnosed with autism.

 

I can only describe the following months as living a through a nightmare.  I felt like I was grieving for my son and the future looked very bleak.  We opted to have an MRI scan and various blood and urine tests to rule out any other disorders.  These all came back clear.  We were not offered any hope or advice for the future. 

 

 

 

Slipping further away every day

 

 

After the diagnoses Matthew seemed to slip further and further away from us.  His odd behaviours became so apparent.  He now communicated by taking us by the hand and leading us to things that he wanted.  He stopped looking at us.  He would run up and down the room with a high-pitched squeal and he seemed to be happier in his own company.  When other children came to visit he would leave the room and entertain himself upstairs.  He could often be found watching Disney videos, looking at animated books for long periods and focusing on the same pictures or pushing brio trains around a track in a repetitive way.   He started waking for several hours most nights.  He would giggle and bounce on his bed.  The stress was unbelievable.  Not only did we have to face autism all day every day but now every night too.

 

When Matthew was three years old we started to look for suitable school placements.  We knew he needed early intervention and felt each day that went by was another day lost.  We visited several autism specific schools but we both felt that they were inappropriate and would not meet his needs.  I then read a newspaper article about applied behavioural analysis.  I spent the next few months networking with other local families.  We set up an initial workshop with a consultant from the states and I took on the daunting task of teaching Matthew.  I hired one trained therapist and had a family member to help out.  

 

The journey began.  I started to feel more positive.  Even though Matthew responded slowly to the treatment, we could see improvements.  At the outset Matthew had no imitation skills and his receptive and expressive language were severely delayed.   He could not even imitate a sound.  He was also not used to having demands placed on him and we started to see some challenging behaviours emerge.

 

I remember taking several weeks teaching him to copy simple actions when he eventually mastered these small tasks I was elated.     However the year that followed was stressful, involving a legal battle with the local educational authority to secure funding for the programme. 

 

Whilst I was sure that the behavioural approach was helping Matthew, I felt there was more to his problems. 

 

 

 

Sharing a tickle with brother Adam

 

He continued to have some major sensory issues.  He had to be watched all the time as he would put everything in is mouth.

                                                                                                               

He did not seem to feel pain appropriately.  I was out walking with him one day and saw him drag his hand along a brick wall taking all the skin off his knuckles and making them bleed.  He did not even notice.  I was horrified.  He would fall over and did not appear to respond like other children.   

 

I kept hearing about supplements in the newspapers that were thought to help children on the autistic spectrum.  I started to supplement him with Eye Q and saw improvements in eye contact and concentration.   I also tried DMG and found this helped his language, but made him hyperactive.  I kept using it as I thought it would help his immune system and seemed to slightly improve his sleep.

 

Around Matthew's fourth birthday I attended a talk by AiA about dietary interventions.  I listened intently as the speaker described some of the symptoms that Matthew displayed and suggested removing gluten, casein and artificial additives and preservatives to alleviate the problems. 

 

I implemented the diet and took all offending foods away - we had major problems.  Matthew's behaviour deteriorated.  He had just started mainstream nursery so the the timing was awful, but within a few days he had developed better eye contact and was calmer.  Over the next few weeks he started to sleep through the night and his receptive language improved.  He had previously been impossible to toilet train because he just did not seem to feel the need to go and suddenly he was going to the toilet himself.   He started to feel pain, temperature and respond to fright appropriately.   He was learning new receptive labels and able to follow simple instruction.

 

When Matthew was five I was still looking for missing pieces to the puzzle and took Matthew to see a complimentary doctor in Manchester.  He suggested that we supplement with zinc and pancreatic enzymes and try to support his liver.  Matthew initially responded well and seemed a lot calmer and settled.  After a few months he started to try more foods - I put this down to the zinc supplementation.  The doctor then suggested we reintroduce milk products.  This was a complete disaster.  Matthew totally regressed and became an emotional wreck (so did we).  He screamed, became aggressive, sleep disturbed, started to bite anything wooden and was thoroughly unhappy.  We suffered this for a few weeks and then took milk out of his diet again.  He returned to his former self.  Needless to say I gave up on this approach and did not return to the doctor.

 

 

 

Matthew Age 6 Years

 

Then secretin hit the press.  I was interested, as it sounded incredible.  The newspapers portrayed it to be some miracle cure.  I found a doctor who was travelling around the country giving synthetic versions of these jabs called Secrelux.  We gave it a go.  After the initial injection Matthew really seemed to be more aware.  He was really with it and I was thrilled.  However that night he had really bad stomach cramps and cried a lot.  I was concerned.  We tried two more injections and the doctor altered the dose, but after each one we saw the same reactions.   Again I was concerned that there was not enough research behind this treatment and did not continue.

 

Matthew attended mainstream school until he was seven years old.  He was fully supported but he lacked the academic skills to participate in the lessons as they became more advanced.   I was also concerned that the school did not understand his problems or behaviours.  We again trawled all the local special schools but could not find one that would in our opinion meet his needs.

 

Around this time Andy went on a three-day Verbal Behaviour (VB) course by Vincent Carbone.  We changed from PEC's to sign (with words)   Word retrieval and articulation improved. We made the decision to educate Matthew on a full time basis at home. 

 

So, we worked hard at educating him, but he still had a lot of issues that no matter how hard we worked, we had no effect whatsoever.  He had a constant frown and regularly wanted us to put pressure on his head.  He toe walked, He bit his own hand when frustrated and giggled for no apparent reason.  He would rub his privates continuously.  He would also have very intense emotional outbursts that we could not explain. 

 

I knew that a lot of his behaviours became more extreme when he had a dietary infringement, so I looked again at what he ate.  He craved sugar - and I kept hearing the word 'yeast', so I removed sugar and saw improvements.      Also to my amazement Matthew started to eat organic meat, fruit and a few vegetables.  Another step in the right direction.

 

Matthew aged 7 Years

 

In January 2005 we took Matthew to Florida and spent a week with a behavioural consultant.  He suggested that we look further into biomedical interventions.  He really felt that we needed to sort out his biochemistry in order to optimise his learning.  This was what I needed to hear.  It was what I believed but I just did not know where I was going to find the right help in the UK. 

 

 

 

Matthew Aged 10 Years

Back home I saw a posting on the AiA forum from Zoe asking about biomedical approaches.  From there things have snowballed.  Jo emailed me and mentioned starting a new yahoo group to support parents and gave me details of a local nutritionist, Jean Muscroft who was familiar with these treatments. 

 

In March this year we started having blood, urine and stool tests carried out with Jean.  We began Matthew's individualised biomedical protocol.  We introduced vitamins and minerals, calcium, fatty acids, zinc, vitamin c and many other supplements.  We are treating yeast and plan to start with chelation under the guidance of Dr Heard of the Breakspear Clinic shortly.   It is early days, but I feel that much progress has been made in this field over the last few years.  We are positive now that we can treat Matthew and help him on the road to a better future.  We will keep updating his story with his progress. 

 

 

Jane & Andy

Proud Parents of Matthew

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