Epilepsy care for Asher
Asher has recently been diagnosed with idiopathic generalized epilepsy as of March 9th 2020. It's been extremely stressful and emotional to receive such a diagnosis during the covid 19 pandemic.
Asher started having, what we now know is absent seizures with myoclonic body jerks, around 12 months. Because of the infrequency it was hard to get them recorded as his PCP requested. They started to get more frequent around 15 months and occurred hourly after a surgery for tubes and adenoid removal late February.
Thankfully, we were able to get an EEG quickly which showed abnormal discharging of his brain. We started medication right away for his seizures which included many harsh side effects which altered his personality and behavior severely. We had a MRI scheduled late March but it was cancelled due to covid 19. It was very upsetting but we understand why. We were able to schedule another MRI for May 19th. We also are rescheduling genetic testingas that was cancelled as well.
The MRI (brain MRI with contrast which he will need to be sedated for due to age) and genetic testing will hopefully provide more information about Asher's brain and his epilepsy so we can find the right treatment and medication. It's truly a pathway of trial and error and it's so incredibly difficult to watch a one year old experience this.
Due to insurance deductible resetting on April 1st, we are required to pay for this entirely. (Previously it was 20% which was hard but manageable) I fear we will not be able to get our MRI completed next month which will prolong some of his suffering.
This is why we have decided to try to raise money so we can get our sweet boy on a better path. He is showing some early signs of regression cognitively, so the sooner we can get answers and more data the sooner we can get him the support we need.
Its hard to step out in the open and ask for donations and hand outs. It hurts our pride as we both work as hard as we can. It's worth stepping out for Asher though and we know people have experienced hardship. We know people love and support us. We know people have seen epilepsy in action. We know we have a little warrior that will overcome this. Whether it's one dollar or a share we appreciate your time in reading our journey and helping us battle this beast called Epilepsy. Thank you!
donations will
cover: Brain MRI with contrast, Anesthesiologist and medical testing. If there is any extra it will be put aside for medical expenses for Asher for doctor visits and medications. There will be many. This is going to be a very long road for us.