“Then we got into a labyrinth, and, when we thought we were at the end, came out again at the beginning, having still to see as much as ever.” ― Plato
When I think of a labyrinth, the wonderful movie directed by Jim Henson and starring David Bowie comes to mind, followed closely by the amazing graphic art work 'Relativity' by M.C. Escher. (Pictured left.)
Maurits Cornelius Escher (1898 - 1972) was one of the world's most famous graphic artists. I'm sure many of you will be familiar with 'Relativity'. I'm sure this image and other works by M.C. Escher, inspired the design for one of the sets in the 'Labyrinth' movie. According to the biography on his official website http://www.mcescher.com/, M.C. Escher was a keen observer of the world around him. Playing with "architecture, perspective and impossible spaces," his graphic creations show us that reality is "wondrous, comprehensible and fascinating."
When you have a child that learns and interacts differently, like M.C. Escher, you spend a lot of time observing your world to comprehend it so that you can help your child discover the wondrous possibilities. You play with your environment and tools, you are constantly looking at things from different perspectives, and you are always dealing with seemingly impossible situations. Yet, just as you think you have hit a brick wall, you suddenly find a new path or stairway. It maybe be upside down or sideways, but it will take you in a new direction.
A new direction that we are exploring right now is a possible medical reason for recurring symptoms that have a huge impact on Sam's learning and behaviour. At the end of July, after he had been unwell, we noticed that his behaviour had begun to change. Then one weekend, it was like 'our' Sam had been replaced by a totally different little boy. The number, duration and intensity of his 'stimming', episodes increased dramatically. He was not sleeping well, so he was always tired. He began wetting his bed again at night, he developed a number of tics that we had never seen before - grunting and sniffing; and his anxiety levels soared. The smallest thing could trigger a melt down. It was like everything in Sam was short circuiting.
Then the feeling of de'ja' vu hit. This was exactly what had happened last year. Sam had suffered from a string of infections at the beginning of Term Three, including Strep, which necessitated a course of antibiotics. Then everything went haywire. This is when we decided to take him out of school and home school instead. At the time, my father had come across an interesting article about a condition called 'PANDAS' - Paediatric Autoimmune Neuropsychiatric
Disorders Associated with Streptococcal Infections.
In simple terms, courtesy of the PANDAS Ireland website, "when a person has an infection, the antibodies produced in their system fight the infection. In Pandas, however, it is believed that the antibodies attack the cells in the basal ganglia of the brain, causing abnormal movements and other neuropsychiatric symptoms."
We didn't look into it any further last year, but this time we could not ignore the possibility that there might be a link between Sam's illness and his change in behaviour. Also, people with 22Q 11.2 commonly suffer from autoimmune disorders. This new information has also caused us to review earlier behavioural episodes as far back as 2011 when Sam first began 'stimming'. Initially we had thought this was Epilepsy, but after investigations by a Paediatric Neurologist, Epilepsy was ruled out. Prior to these early episodes, Sam had experienced a long period of ear and chest infections. Could that have been when it all started?
So I delved further into PANDAS online and discovered many interesting case studies and a lot of new medical research, most of which has been carried out in the United States. However, one blog post I happened across by a mother of a young boy in Ireland, resonated with me. It was called "My Son and P.A.N.D.A.S" by KC Bloggs. Her experience lead her to create an organisation, PANDAS Ireland, to help raise awareness of PANDAS and this resulted in a PANDAS Awareness Conference at the end of 2014. On the website they have links to videos of key speakers and one by Dr. Rosario R. Trifiletti MD PhD, was particularly enlightening.
With research in hand I visited our wonderful GP with Sam to talk about our suspicions and concerns. My gut and Mummy instincts told me there was more going on than just the 22Q and that a clear pattern has evolved over the last few years. Enough to warrant further investigation. We now have a referral to see an Immunologist and Sam's Neurologist. The Neurologist appointment is booked in for the first week in October. Waiting for an appointment date to come through with the Immunologist.
It is now almost two months since Sam began to struggle again. We've had very bad days and a few ups and downs, but he is slowly coming back. This school term, like last year, has been difficult, but thankfully we have not lost any ground. Next term we will bounce back and finish the year on a high.
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