Getting Closer

Ella continues to have seizures and they are getting stronger instead of weaker, more frequent, and are starting to cluster again. She is back on an IV. The MRI showed polymicrogyria in the right frontal lobe of her brain, which is a malformation or disorganization of the neurons that can be just coincidental or a cause for seizures. In Ella's case, the neurologist currently believes this is the likely cause of her seizures as no other factors have been discovered. But, we are still awaiting the results of all the blood and lab work from yesterday. The cause only partially determines the course of action to be taken. We still don't have a firm diagnosis, which means we don't have a firm treatment plan either. With seizures, the type is usually determined by which medicine is effective in controlling the seizures instead of the type being determined and then, prescribing a medication. Kids with polymicrogyria either have infantile spasms or other seizure disorders. So, it makes sense that she is showing signs of both infantile spasms and other disorders. The amount of developmental delay and disability associated with polymicrogyria is across a broad spectrum. In some, delay is so mild that polymicrogyria is not discovered until the child is much older and starts having seizures. In others, it's totally devastating from the start. There is no predictor of severity of delay. The neurologist believes her deficiencies aren't the most severe since she is responding to us, but there's no way to know how severe they are at this point. She's not the worst she could be, but not necessarily the best either. Since she initially responded to the Keppra, her dose is being increased to the maximum allowed. If that fails, we will start the ACTH. Even the doctor wants to avoid this if at all possible. Her prognosis is best if the seizures are stopped within the first thirty days of symptoms to avoid further damage. We now understand that it's not the number of seizures that do damage, but how long before the seizures are controlled that is the determining factor. The initial damage is done. We don't want it to be prolonged. We know she was having seizures as of May 25, but don't know if it started prior to that. Assuming May 25 was the start date, we still have enough time to take a final attempt with Keppra and if it fails, start ACTH before the optimal window of time closes. We'll know within the first 24 hrs. if Keppra was successful. If Ella requires ACTH, we will be here into next week. If not, we'll be home this weekend. We want to go home. In the future, her further treatment will likely require us to come back every so often. We are hoping that this isn't the case and that her treatment can continue at the Children's Hospital Clinic in Lowell, just up the road from our house. Please pray that the test results would give us a definitive diagnosis of something other than infantile spasms with the corresponding developmental delay and disability so that we can have a definitive treatment plan and avoid ACTH and the undesirable side effects that come with it. Pray that she would have no developmental delays from polymicrogyria and would continue to respond to us, laugh, coo, and smile, developing as a baby of her age should. Her laughing and smiling is a big answered prayer for us as it is the thing we missed the most. It lifts our hearts and spirits. Please pray that she would respond favorably to the Keppra and that her seizures would stop immediately and permanently so that damage is not prolonged, we can go home, and her diagnosis points to something other than infantile spasms with the accompanying developmental delay and disability. Please pray that we can continue her treatment in NWA instead of Little Rock. Please pray that we get approved for ARkids. Please pray that Ella avoids any extraneous illness while she is here as she is battling congestion and a cough that is moving toward her lungs and a diarrhea bug. Cooper is sick and is on antibiotics and breathing treatments. Pray that he gets well and doesn't get Jackson sick. Pray for our families as they care for our kids while we're gone. We're just waiting to see what happens next.