When Avagrace was five months old she had two "grand-mal" Tonic-Clonic seizures. The doctors thought that her mom had "imagined" the first one. When she had her second one the docs said it was due to reflux. She had surgery to fix the reflux (Nissen Fundoplication) and a GTube was inserted for the next 5 months. Fortunately the "grand mals" stopped until she was four. She continued to have absance and drop seizures but mom did not know that they were seizures and she explained it to the pediatricians but even mom dismissed them as "clumsy, ditsy or flighty" tendencies. When Avagrace was four she began having grand mal seizures and was diagnosed with epilepsy. Her EEG showed seizure activity in each portion of her brain and yet she was labeled with childhood absance epilepsy. She began taking anti epileptic drugs and cycled through several types and combinations. Prior to her first tonic-clonic/grand-mal seizure, Avagrace knew all of her letters, numbers, colors etc. She was very artistic and loved to talk. However, she slowly began to regress in learning and verbal skills. Her clonic tonic seizures seemed to be "under control' for a few months, however she would continue to have numerous absance seizures every day.
Then in Mid March (2011) Avagrace began having break through (grand mal) seizures. Avagrace and her mama were admitted into the hospital when the seizures would not stop coming. Gracie was fortunate enough to get a new neurologist when she was admitted into the children's hospital and both the new doc and mom assumed that she had "outgrown" her medicine. She left the hospital and two days later she was taken back to the hospital by ambulance because she had another cluster of GTC seizures and her last seizure she went status (a seizure that does not stop despite emergency medicines and lasts longer than 30 minutes).
Her new neurologist immediately scheduled an EEG showed which told us that Avagrace no longer had patterns of normal brain activity and spikes in seizure activity but instead she had constant seizure activity. Her diagnosis would now be Lennox-Gastaut Syndrome.
Lennox-Gastaut syndrome is a catastrophic form of epilepsy that causes mental retardation and possibly death. Our otherwise normal developing daughter, who has had regression from her epilepsy, is actually slowing loosing her cognitive function. Every time seizure activity causes a clinical seizure, brain damage occurs, sometimes so minor you wouldn't even know it, other times it can take the persons life.
Epilepsy alone causes the same number of deaths each year as does Breast Cancer. It also affects more children than autism and yet epilepsy carries with it a stigma and very little awareness or understanding. Due to US legislation, many seizure medicines and durable medical equipment that are available in Canada, the UK, Australia, etc...are not available here. THE US is lagging behind and we need your help!
Please pass this on, like Avacake's page on facebook, and consider donating to our fundraiser to keep our daughter safe!
This is her journey and her place to raise awareness and seek prayer and support from those who choose to care! Thank you for reading this!