Status Epilepticus
Please send love and hugs for Sloan
I can’t believe it’s been so long since our last formal update here. A lot has happened and yet, it feels like I can sum up so much of our journey lately into one word: seizures.
In February, Sloan started exhibiting weird startle behaviors from sleep. After a few weeks of several emergency room visits, discussions with doctors, video EEG, etc., we confirmed she was having seizures. We got some meds, tried to get them under control and it worked for a bit.
We had a lot of happy moments as a family in the Spring, especially as we celebrated Sloan’s first birthday! She was growing, smiling all the time, we were lining up therapies for her and were looking forward to her thriving!
Unfortunately, the bad days started getting really bad. She started having cluster seizures, basically back to back seizures for hours. Several days we counted over 50 seizures. Terrifying for us and exhausting for Sloan! After more tests and EEGs, Sloan was diagnosed with epilepsy as a result of her neuro symptoms from Gaucher and it has been an all out battle for her to find comfort since then. Now there are too many bad days, and we consider the good days when she is able to rest comfortably. We haven’t seen her smile in months and it breaks our heart that this kiddo, who was always filled with such joy, is constantly experiencing pain and suffering.
Last week, things took another turn. Sloan has been experiencing what we thought were neuro storming episodes - extremely high and dangerous heart rate, profuse sweating, clear distress - we tried to manage with meds, but after several days of this lasting for almost 8 hours a day, we knew there had to be something else going on so we headed to the ED to do a full work up.
We were relieved to find out she tested positive for adenovirus, something for us to blame and treat! But as soon as we hooked her up to the EEG, despite having a massive cocktail of medication to calm her storming, she was showing constant subclinical seizures and was officially in status epilepticus.
We treated aggressively to break her out of it, but we couldn’t. We made the decision to put her into a medically induced coma and while it took some very high dosing, we successfully broke her out of status epilepticus and even managed burst suppression. Intentionally, her brain waves were almost completely flat and we’re giving her brain a chance to rest and reset.
There are certainly risks and complications that come with this decision, but so far, Sloan’s body is handling it well and we remain hopeful. But we need prayers as some of the biggest challenges are ahead of us.
We began this morning to wean some of the drugs and sending up hope that as Sloan begins to wake up over the next few days, we’ll see if it worked or if her brain is continuing to seize and need to discuss a new plan with her doctors.
We desperately pray that it worked and it provides much needed relief to our darling girl and start to get those beautiful smiles back!
Love, Maggie
