My daughter Chade was diagnosed with #TuberousSclerosis Complex 2015, she was three at the time.
It all started with one of her eyes pulling inwards. We went for test but couldn’t find anything wrong with her eyes. A few months later I noticed the first absent seizure. She was just standing there, staring. She wasn’t listening to me.
We took her to the Pediatrician. He prescribed her first seizure medication. At that stage I queried about the white spots all over her body. He suggested it might be a skin allergy to soap or cream. So we tried to treat it.
A month or so later the seizures changed. She started walking around and pulling at her clothes. We went to see a Neurologist. After a very long consultation and a prescription for new medication I queried again about the white spots. The doctor looked worried and had a look at them.
After some family history regarding epilepsy and white spots that ran in the family she sent us for an MRI. It was confirmed. Her brain had many tubes and two nodules that can grow in the brain.
Since then we’ve been researching #TSC and trying to get tests done. TSC is a genetic disorder that caused tumors to form in many different organs, like the brain, eyes, heart, kidneys, skin and lungs.
We already know she has it in her brain and skin problems are starting. We recently found out she has on both her kidneys, but they don’t cause any problems at the moment. The next steps during the next few months are testing her eyes, heart and another MRI to see if the nodules have grown.
The other problem we are dealing with is that is delayed developmentally. She needs to go to GR 1 next year, but she is at the level of a three year old. We are currently getting her evaluated to see where we go from here regarding schooling.
This is a long process with new challenges along the way.