The Australasian Tuberous Sclerosis Society

We have two beautiful daughters, Elise, 3 years and Dayna 2 years.

Dayna was diagnosed with Tuberous Sclerosis at 4 months after investigating seizures that had started at 2 months.

At 6 months Dayna started having Infantile Spasms and was put on Synacthen injections for 6 weeks. This treatment suppressed her immune system and she developed a major chest, ear and gastro infection, which had us in hospital for a week.

Lots more stays in hospital followed for various reasons, mainly she would get sick and stop drinking which would require tube feeding for a few days each time. Another reason for admission was to start the Ketogenic Diet which we wanted to put her on after trying many different medications that had not completely controlled her seizures. Unfortunately we had to stop the diet after only a few months because she had chronic constipation prior to the diet and it was worse from the diet, which meant that the seizures were just as bad as before.

While the diet was not successful for the control of her seizures, it did make her become a lot more alert and she started eating solids for the first time. To assist her development, Dayna has received Speech Therapy,
Occupational Therapy and Physiotherapy, and she also attends early intervention once a week. She sat up at 11 months, crawled and stood up at 18 months and now cruises the furniture and walks holding our hands and in a walker, with AFO's as she curls her toes and stands on them.

While she is unable to speak, sign or feed herself, she is learning to communicate through play and body language. Dayna's seizures are still not completely controlled; she has a number of complex partial seizures each day and is currently on four medications. Her lesions are on her brain, kidneys, heart and she has
ash leaf patches on her skin. She is a very happy and sociable child who loves to laugh and cuddles everyone she meets.