October has brought our family an intense time. Little Atticus has seizures. Nasty, tricky, hard-to-diagnose seizures.
I've been walking around with that sensation like the one between sleeping and wakefulness where you try to sort out your dreams from your reality. Sometimes it's such a let down, to realize that your magnificent experience was only a dream. Other times, you remember something awful happened, and you feel an overwhelming sense of relief to realize it was just a nightmare. And then there are the times where as hard as you try to convince yourself it was only a nightmare, you remember that in fact it is your reality, and that sleeping is your only escape from this feeling.

Before I get ahead of myself, I should mention that we have so much to be grateful for. We have every reason to be hopeful that this will all end just fine and Atticus will rebound. Only 1:33,000 babies have this distorder but even Atticus has a rare case within this condition - in all these positive ways. We believe everything will be OK.

After much persistence, we were finally able to get some answers on some spasms Atticus had for 5-6 weeks. At night, he would wake up screaming, and go into a series of little fits where his head would be forced into a nod, chin to chest, and his arms would fly out in front of him. This would repeat every few seconds for minutes. Kevin recorded him doing this here. We had described this to a different pediatrician at our clinic, who thought it was acid reflux, so for the last few weeks of these fits, we'd been trying to squeeze a syringe full of Maalox down his throat. These were awful to witness, and they disrupted Atticus' otherwise perfectly beautiful full-night sleep.

The spasms began decreasing to just once a night, and he even went a couple of days without one, but we decided to have him seen by his own pediatrician to check up on it. We took in the video of Atticus, and after seeing it, our pediatrician said it could be seizures and ordered an EEG, which would take several days to get. He also prescribed Prevacid to ease any reflux that might be related. I was on a business trip when I heard they might be seizures, but I immediately googled infant seizures and found this video matching what Atticus does. Dozens of other videos matched. It was heartbreaking. Kevin and my dad took Atticus into the ER at Primary Children's that night, where he was seen by three doctors and turned away with a diagnosis of Sandifer's Syndrome, a type of acid reflux.

When I researched Sandifer's things were not lining up correctly. Atticus bobs his head down, which is counter-intuitive to reflux. Also, his fits were at night, not right after feedings. Atticus' records show the note from the ER was incorrect and also stated some outright false information that ignored some developmental delays Atticus has. The ER had also given us some bad information about seizures, associating them only with the grand mal type, and ruling out these kind of spasms as being remotely possible to be seizures. They also said seizures don't cause brain damage in infants, which unfortunately is not true. This was a huge cause for concern.

On Friday I received a phone call from Stina's brother-in-law, a neurologist, who told me that infantile spasms (West Syndrome) was very likely, and that an EEG and treatment could not wait. We took Atticus back into the ER and demanded a pediatric neurological consult. We got an EEG that didn't capture any spasms/seizures but showed abnormal discharges that indicated that seizures have or may take place. This was enough to show Atticus had not been having only reflux, but had been having infantile spasm (IS) seizures. We got him on an anti-epileptic drug right away. Then my research on the disorder began, and I found some terrible, heartbreaking statistics about development and mortality that I'm not going to cite here. But they were devastating.

Fortunately, every case is unique. As I said, there is much to be grateful for and hopeful about. Atticus shows some developmental delays (he's showing up 2 months behind on some milestones), but not as bad as I've read about. His EEG doesn't show a certain pattern called hypsarrhythmia usually associated with infantile spasms that can cause a lot of concerns. While I am upset this took 1.5 months to catch, it's earlier than the average time it usually takes parents and doctors to catch. And probably the best result is that his seizures were declining on their own. I've also realized I've got to become an expert on this right away. I now have two full-time jobs, since treatment is such a key to getting the best possible outcome.
We accept all forms of positive energy, prayers, and good vibes. Some kids with IS do fine in the long run. We ask everyone to please hold that picture of our Atticus doing fine, making a full recovery, forging new developmental pathways, and without any seizures, in their minds and hearts. We know this is possible. We pray for this outcome.