Condensed Overview of the effects of ADHD, Tourette's Syndrome & X-Linked Ichthyosis on my son Simon English D.O.B 4/12/69 by Mr W.English my dad.

Simon and ADHD
Simon gets distracted by any little event, and has the attention span of a flea.
Often he acts before he thinks and never learns from his mistakes, lives for the moment and gets swept away by whatever is happening to him right then and there.
He has no sense of time at all and that is how Attention Deficit Hypoactive Disorder
is typically considered.

A description of the whole picture goes much deeper. I scream at him in frustration
although i know he can't help it. If he does do anything it takes forever and most times i have to do it myself and he screams back at me because he doesn't want me to
interfere.
He is so disorganised and he never finishes anything. No matter what i do by the way of begging, persuading or rewarding, he keeps on doing the same stupid things over and over again. He never considers the consequences of his actions and doesn't seem to care how much they hurt. its easy for him to get overwhelmed and sometimes he just wants to turn off and shut everything out. He is so inflexible and unpredictable and can blow up over any little thing.

The spectrum includes a wide range of "executive dysfunction's" (such as, poor or none existent self control and foresight), co-morbid disorders (such as anxiety, depression and bad conduct).

As if this were not bad enough, Simon also has to cope with Tourette's Syndrome.
This disorder manifests itself by physical jerks, verbal outbursts, throat clearing and in his case to a lesser extent, swearing. The condition causes Simon a considerable amount of embarrassment. Add that to ADHD and this increases his frustration, his anxiety, depression and his self control. Because of his lack of sense of time, these outbursts do also happen through the night and are of great concern especially to his neighbours and have resulted in him being evicted on more than one occasion. Couple Tourette's with ADHD and things can only get worse and they do, which must be awful for anyone to have to tolerate.

Now add a third dimension , that of X-linked recessive Ichthyosis. This is the most complicated condition. To put simply, in 80% of sufferers its the inability to shed dead skin caused by a mutation or deletion of the steroid sulphatase gene(STS) located on the short arm of the 'X' chromosome, in the other 20% of sufferers there are further complications. In Simon's case (and my two grandsons Christopher and Stephen) there is a very large deletion with many unknown effects, some that are known are the marker (absent) DXS 996 that is known to correlate with mental retardation. In more recent times deleted genes Nuroligin4 (NLGN4)and VCX-A. Both are known to cause mental problems,NLGN4 affects the molecules at the nerve ends in the brain.

Put this all together and Simon has nothing left to fight with. He desperately needs to look after his skin both for hygiene purposes and to protect against infection.

As a foot note, there are four in the family with the same deletion; Simon, Stephen, Christopher. The fourth member of the family is an uncle who has been in care since his early years. I have never met him and he must be now in his 60s.

writen by Mr W English (father and appointee to Simon and Grandfather of Christopher and Stephen) mum of chris and stephen is Gail.....

gene map