Tyler's Story Tyler is watched over by Angel Bear. Wouldn't you like to adopt a bear to watch over your site?

Tyler was born old. (09/01/96) At 9lb and 2 foot long he came in this world looking like he was a toddler. He viewed the room around him and assessed the situation. Yes, he would like to stay and yes you can be my daddy he said to his father. After 5 miscarriages and Tyler being the survivor of triplets plus kidney failure and a broken rib during the pregnancy the big day had finally arrived and we were blessed.

From the moment he was born he was not like other children, he slept in forty minute cycles, screaming between three minutes and three hours every cycle over a 24hr period (a family trait I discovered) He failed Tresillian, Karitane and Koala cottage, our local residential stay unit. At eight months and four days he walked, at ten months he had 25 words, by Christmas he was talking in three word sentence structures, what ya doing, where ya goin and the screaming decreased enormously however the sleep was still a problem and remains so today.

At eleven months we took him to a Sleep Disorder Specialist who told us that Tyler had Short Sleep Syndrome (no surprise there) and he advised us that children like this were always the smartest and we should be lucky because he was obviously gifted. So at eleven months we had him assessed developmentally and were not surprised to discover that our eleven month old was developmentally three years of age. Should he continue to develop at that pace we were advised to consider enrolling him in primary school at the age of three. Whilst we were exhausted it was nice to know that our child was special in an advanced way.

As his first birthday arrived it was time for his MMR vaccination as he had passed his DTP with flying colours we weren’t all that worried. To be on the safe side though, we had him supervised at the local hospital and after three hours were sent home. Within 48 hours Tyler had had 17 seizures characterised by his right arm extended in front of him and wandering about aimlessly until he hit something. We had guests over that weekend and at first thought that Tyler was playing a new game or trick until he hit the TV for the fourth time and put his teeth through his tongue. I rang the hospital, "don’t worry" they said "if he’s still unwell in the morning bring him down, we’re too busy to see him today and on a weekend the doctors won’t come and visit anyway". By Monday he had lost all eye contact and something was not right, we couldn’t work out what it was but later we realised that Tyler wasn’t talking, we thought he was just feeling miserable.

Our experience at Westmead Kids Hospital was nothing short of deplorable, no medical records bracelet was given, no observations recorded and no tests were done. After four days we were discharged with no follow up, no medication, and no appointment. We were told nothing by the staff, but the registrar vaguely mentioned Epilespy but wasn’t sure because no one had seen a fit and a EEG was booked for some weeks away. I insisted and the EEG was done during Tyler’s stay but it came back normal. I questioned them about his speech and was told by our doctor " He’s young he’ll learn to talk in his own time" clearly she did not believe us that Tyler had been talking previously nor did she care, her role she told us "was to administer medication". Rehabilitation was not within her area of expertise nor could she recommend anyone for a future referral. I insisted Tyler be seen by a speech therapist, I was advised that that was not possible they were booked out. I insisted and threatened legal action, a speech therapist arrived handed my husband several sheets on nursery rhymes and how to talk to your child and left, clearly she had no intention of assessing Tyler.

We left the hospital. We were getting nowhere. We had a follow up appointment in a years time should we need it. Tyler was screaming, biting, kicking for up to 8 hours a day, he could walk but was very wobbly and we spent several hours down the local casualty with suspected concussion’s, he started to follow the lines in the carpet for hours at a time and collect all the blue things in the house and store them under the dining room table, we were at our wits end.

We decided to focus our energy on getting early intervention and not worry about how Tyler came to be so ill. No luck there, the waiting lists were 12-18 months long and with out a diagnosis/prognosis no one knew how to treat him. We placed him on private waiting lists at speech therapy centres and were just about ready to lose our home ($200 a week in speech therapy) when Tyler was picked up by a government speech therapist. To this day we thank God she saw what we did and he immediate began therapy. It became very clear to our therapist, Lana Meggs, that she could teach Tyler a handful of words and within a few weeks an epileptic fit would occur and all his language would be lost forever, those words don’t and still haven’t come back sending us back to the da da, ga and ba every time.

During this time our speech therapist contacted the hospital and Tyler was readmitted under a new doctor, tests are still under way but to date very little is being done. Very slowly his eye contact came back (I mean very slowly) some days there was no improvement at all, I had to wait every morning to see what he was like before planning the day. But miraculously he started to make hand gestures for things like drink and eat, our little boy was coming back to us. We took to this in a big way, we had a direction, he lead, we followed with gusto.

Our next hurdle was sign language. Unless you are deaf you cannot learn sign language in this state, not ones to mess around we lobbied the government and won but not before six months had expired and 147 phone calls had passed and only after threatening media humiliation and legal action. This prompted one particular doctor to contact us and agree to see Tyler (yes, the same doctor who told us to come back next year). Having viewed Tyler’s documentation from his early intervention assessment he decided that Tyler had a vascular cerebral artefact in the left temporal lobe (possibly due to a stroke) epileptic aphasia and central deafness or auditory verbal agnosia. At no time has anyone ever mentioned to us that the immunisation was partially or fully responsible for this occurring. The best they have come up with is that Tyler’s sleep problem was probably vaguely epileptic and that the immunisation may have thrown his system over into full epilepsy. Without tests they cannot tell us anything and many refuse to test, thus never having to claim either way whether the immunisation was a cause or a catalyst.

Today Tyler is a happy healthy little boy who can talk on days without fits, we know when a fit is coming as he puts his teeth through his tongue a few days before hand. He uses sign language permanently to supplement his speech difficulties and behaviourally we are on an up swing at the moment. They never last, but we welcome them anyway. He starts deaf school in January and we hope he will remain there without further difficulty.

Tyler's condition has all the appearance of being caused by his immunisation. Part of this site will be dedicated to increasing the awareness of immunisation dangers (we are not anti-immunisation, we just want support when things go wrong) and part will be dedicated to getting the help once a problem occurs.

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