James and Matthew

My name is Pat Coakley and I have Tuberous Sclerosis as does our youngest son Matthew who is seven.
I am married to Adrienne and we have two sons James ( 12 ) and Matthew ( 7 ) I am 42 years of age.
I have for as long as I can remember been treated for a facial rash and had a forehead plague removed when I was three. I had no idea what the condition was / is until I had an appointment at the Dermatology clinic in 1984 and Adrienne decided she would attend with me, We happened to get a young house surgeon / Derm specialist who suggested we go to Genetic counselling as Adrienne was four months pregnant with James. As with a lot of cases we were really given the doom and gloom of TS and we came away really devastated.
Life went on and James was born with no complications and still has no signs of TS. We then had five years of dilemma whether to have more children or not we looked at all available options and for many reasons decided to have another child and Matthew was born in 1990 at this point we still did not really understanding TS and did not really do any research. Matthew was born in October and had a heart murmur which we later found to be a Rhabdomyoma. On the 1st of Jan. 1991 Matthew had a grand mal ( tonic clonic ) seizure and was rushed off to the children's hospital. From then on Matthew's seizure became more frequent and severe at the peak having 40 or so seizures a day of 5 different types of seizures. Today Matthew has one to two seizures a day. The wonder drug for us has been Vigabatrin ( Sabril ). Along the way we like most parents have had to fight to get what resources we need and assistance from early intervention through to teacher aids and education support and respite care.
Matthew is Mainstreamed at school and for him this has worked well socially as he copies but the academic side of school is lacking now and so we are on a push to rectify this. In New Zealand the Ministry of Education has implemented a program called special Ed 2000 and this is supposed to guarantee children the resources the need for ongoing services for their whole school life ( but the whole story is not out yet and many have fallen through the cracks ) I had a bad dose of the flu in 1988 and had sore kidneys, and as a consequence was sent for a kidney ultrasound, they found something unusual and I was then sent for a CT scan. It was at this point that the Angiomyolipomas on my kidneys were found. These did not cause any problem until early 1993 when I had pains while working in the garden. This was the start of the pain road for me and so the level of pain escalated until in 1994 I was hospitalised because of the pain. I was to spend 17 weeks in hospital in 1994 with my first embulisation taking place. I was then pain free for about six months after the embulisation until in 1996 I again started to loose control of the pain and ended in my second embulisation, again pain free for a short time until again loosing control of the pain and having my third embulisation in November 1997. I have had a couple of months pain free and it now appears to be on the increase.

Matthew is scheduled for laser surgery on the 27th May. The medical insurance is covering this as the public hospital system here does not have lasers in the dermatology department. It is classed as a radical
excision of a angiofibroma. If you have a look at the boys photo on the tsctalk photo page you will see that the Angiofibroma occupies most of Matthew's left check and involves his lower eye lid as well. Matthew has had one biopsy and one debulking done by an eye specialist, but of late it has started to bleed and irritates him. While he is out to it the specialist is also going to give his face a once, and at the same time remove a finger nail and laser a inginual fibroma under the nail which also bleeds lots, and another one on his tummie button and one other between his big toe and the next toe of his right foot.

Adrienne and I set up the New Zealand support in 1995 after Adrienne had been writing to several people here in New Zealand. It started by Adrienne putting an article in Little Treasures ( a magazine for families with children under five ) and the group is now at 37 families and individuals around New Zealand from Invercargill to Kaitaia. We also have a list of specialists to whom we send any information and are prepared to assist us with our cause. We are affiliated to and partake in various groups from the Auckland Medical school to Epilepsy as well as several others.

Regards Pat Coakley.