Taylor was born late on a Friday night, after a long 20 hour labour. She was amazing. My beautiful baby girl. She had a head full of black hair and huge, black eyes. She was so alert and aware, but she was struggling to breathe. Her condition deteriorated over the next several hours and Taylor was admitted to the Special Care Nursery for observation. A paediatrician was called and we were told she was in respiratory distress, most likely caused by an infection in her lungs. I was terrified. An IV was inserted into her tiny arm, administering anti-biotics. Slowly over the next eight days, her breathing improved, her SATS stabilized and on the tenth day, we were able to take her home.
After a rocky start, Taylor thrived. She was a very settled, happy baby. She met all of her early milestones - crawled at 9 months, walked at 13 months, babbled endlessly. She said her first words shortly after her 1st birthday and was speaking in two and three word sentences at two.
She was a dream child, loved her sleep, she was always happy, laughing, a pure joy.
My husband and I decided to add to our family and when Taylor was 2 and 3 months, Lucas, our son was born. We felt so lucky to have two healthy, happy children.
I returned to work when Lucas was five months old and it was shortly after this that Taylor contracted Scarlett Fever at childcare. She suffered very high temperatures, an infected throat, she had a strange rash around her mouth and on her bottom. The doctor was not overly concerned and she was treated with anti-biotics and Panadol. She seemed to recover quickly. I really didn't give it a second thought at the time. It was just like a cold/throat infection. Kids will get sick, I thought. She recovered fairly quickly but it was not long after this that Taylor began to change, very subtly at first. We noticed that Taylor wouldn't respond when I called her name. I thought she was just 'concentrating' on whatever it was that she was doing at the time. 'Selective hearing' I would say.
Then we noticed that her speech wasn't progressing at the rate it had previously. Earlier on, it seemed that she was learning several new words each day. And now, it seemed that she hadn't acquired any new words in a month or two. She had significant trouble learning her new brother's name. No matter how hard she tried, no matter how often we practised, she just couldn't seem to get her tongue around it.
Concerned, I spoke to my maternal health nurse and she suggested that it may well just be a reaction to her new brother and her way of dealing with having to share Mummy and Daddy's attention.
Life was chaotic with a new born and a toddler. I soon discovered that two children were certainly more than twice the work. Alarmingly, Taylor's language continued to regress. She reverted back to using one word commands, was unable to name things that she previously could and seemed to be tongued tied a lot of the time. My maternal health nurse suggested that we see a speech therapist and have her hearing tested.
Taylor's hearing test showed that she had normal hearing. We then met with a speech therapist, who took down a complete history and set up a program for Taylor. We saw the speech therapist fortnightly for a month or two. Still Taylor's language continued to deteriorate. The speech therapist suggested that it might be time to see a Paediatrician, to rule out any underlying medical causes. When I asked "what causes, what do you mean?", she suggested that she had only even seen a child's language regress, like Taylor's, in Autistic children. I fell apart. I really hadn't considered Autism or any other medical causes. I had taught children with Autism. Taylor was so different to the children I knew with Autism. She had good eye contact. Had a good range of appropriate emotional responses. Wasn't overly obsessed with any particular toys are objects. Her routine could change without causing her undue stress. It just didn't seem to fit. But I also had to acknowledge that although I had taught children with Autism, I had never seen it develop in a child. I didn't know if these characteristics came further down the track.
We saw a paediatrician, who, after a thorough examination, said that he believed there was no obvious medical cause to Taylor's language regression. He agreed that Taylor did not seem Autistic, continue with speech therapy and to come back in six months. So that's what we did.
Taylor's language continued to deteriorate. She appeared to not understand us a lot of the time. She could not follow basic instructions like 'point to the doggie'. She reverted back to babbling. She responded to everything by saying "Da fa".
After expressing my concerns and frustrations to my sister in law, she suggested we take Taylor to see a Paediatrician that she worked with. He was apparently an excellent doctor and diagnostician. I went to the GP, got another referral and off we went.
This Paediatrician spent almost an hour talking to me and observing Taylor. We went over Taylor's entire history, her birth, illnesses, daily routines. He sat and played with her for a while. Then he asked "Have you ever noticed Taylor staring off into space? Is it ever difficult to get her attention?".......Yes, I had. Taylor would often stop and stare. I thought she was engrossed in something, day dreaming, staring at the TV etc. The doctor then suggested that he wanted to send Taylor for an EEG. He believed that she was suffering from absence seizures, apparently he had observed a few while interacting with Taylor. He then went on to explain that he had just attended a seminar on a rare form of Epilepsy, called Landau-Kleffner Syndrome. He admitted that Taylor did fit some of the characteristics, but as it was so rare, he felt that this was unlikely; but it couldn't hurt to rule it out.
Naturally, I raced home and googled "Landau-Kleffner Syndrome". The hairs on my arms stood on end as I read; as much of what I read, did in fact, sound like Taylor. But there were also some characteristics that did not correlate - she was well behaved, seemed to sense pain.....some of the puzzle pieces were there, but not all of them.
Over the next month, Taylor had two EEGs, one routine and one ambulatory and the diagnosis was confirmed. Our daughter, did in fact have this ridiculously rare form of Epilepsy.
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