-The Results!!! *FINALLAY**

The appointment of all appointments!

Finally. These past 3 weeks have felt like an eternity waiting to hear results from all the workups and testing. To hear something.. anything about how we can help Malia. Its been 6 years since the beginning of it all and it finally feels like we are so close!

Our new doctor at Seattle Childrens Hospital is possibly one of the most amazing human beings in the world. She genuinely cares for Malia, her safety and giving her a life where she thrives and can live as any other kid can.

The doctor started out by letting us know that the FMRI, MRI, PET scan PSYCH test all came back with good results. The results from those tests didnt really help us determine localization of the seizures but, still, good information to have and if ever repeated we will have a comparison.

The extended EEG.. well.. Malia’s seizures are firing from a new place. Its no longer where they were coming from 6 years ago. Malia’s seizures are now coming from all over but the starting point is too deep for them to see using a normal EEG with leads placed on the skin. With DEPDC5 these results are a mixed bag. Does this mean in a year they will be in yet another place? will they be more ‘surface’ and readable with the EEG..?? We just dont know. Not enough research. This means that a resection, DNS or other ‘brain surgeries’ are unavaliable to Malia at this time. We will need to repeat testing, probably around puberty to reevaluate what and where her seizures are.

DEPDC5 is very dangerous and with the risk of SUDEP in anyone with epilepsy alone it increases it even more. An epileptic person has a 1 in 1,000 chance (1%) of dying from SUDEP. An epileptic person who also has DEPDC5 their likelyhood goes to 50%. - We need to do something to lower her risk and with brain surgery not being an option at this time, we need an alternative and quick.