SEAN'S PAGE
|
|
Sean is 11 years old and has been recently diagnosed with tuberous sclerosis. Tuberous sclerosis is a genetic disorder that causes benign tumours to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. It is often first recognized in children who have two neurological symptoms—epileptic seizures and/or varying degrees of mental handicap. In Sean case they have found 3 tumours in his brain so far and they are going to do an M.R.I. to determine if there is any more in his body. These tumours have caused Sean to have a mental handicap, he also complains of headaches, has recently been complaining of double vision and is now having seizures from time to time. To find out more about tuberous sclerosis click on the link. January 2005: We saw Dr. Campbell in
London a couple days ago, he went over Sean's brain M.R.I. with us and did a
neurological evaluation. He than reconfirmed Sean's diagnosis of
tuberous sclerosis. He ordered a bunch of tests, an ultrasound of his
kidneys to check for more tumour growth, an E.E.G. test to be run for half a
day to monitor seizure activity, to decide on the meds to treat them. An
echocardiogram to check for tumour growth in his heart ( very rare that
there is any there) an M.R.I. of his lumbar spine ( lower spine) to
check for tumours on the spinal cord, he feels there could be some there
causing his inability to have bladder and bowel control. All of these tests
will be done over the next couple of months. Sean currently has a strep
infection which has infected the blood and is on antibiotics for it and will
need an E.K.G. in a month to make sure the infection has not caused
any damage to his heart. If they do find any tumours on the spine ,they can
remove them, a bit scary but worth it in the end if it means no more
diapers. Now it's just a matter of waiting for all the results to come in. August 2006: Sean last M.R.I. showed more tumours in his brain, he now has 5, there is nothing that can be done to remove them since they are wrapped around his brain tissue, removing them would do more damage than good. Sean is recently experiencing pain in his leg joints and he has many mood swings, we are not sure what is causing them, it could be his medications which are currently being adjusted by his doctor. January 2007: Sean recently had a third neuro phsycological assessment done, the report shows that his mental ability has gone down hill, Sean will turn 13 this month and his mental ability is between a three and nine year old, depending on the task. We were told that Sean suffers also from a form of autism and childhood dementia. We are finding it more difficult to handle him at times. We are working closely with his doctor to achieve the proper medication for him. |
