My boy lost his smile

It’s been quite a while since my last post. Mostly due to the way things had been going.

Braxton was hospitalized again in November. He had another virus and we were unable to keep control of his fever so the seizures wouldn’t stop. While in he maxed out on a few meds and started others. We also missed Thanksgiving with family.

This is when our boy stopped smiling and laughing. He had regressed developmentally and seizures were more frequent. It’s been tough to say the least.

After the holidays we seen an epileptologist where Braxton was officially diagnosed with Dravet Syndrome. This is when the severity of his disorder really hit me. Being told that he now qualifies for make a wish because of the higher chance of SUDEP. I believe he used the word “Chronic”

He was put on yet another medication, however, we also started to wean one of his other medications.

We ended back at the hospital in March. This time he tested positive for RSV. He has breathing issues so he ended up in the picu on oxygen. It was decided that he should be weaned from his Zonegran as one of the side affects is temperature control issues.

The Zonegran wean was a nightmare. For two months he cried all day long. We were all emotionally exhausted. We sped up the process as to not drag it out for two more months.

After Zonegran we continued the wean from phenobarbital. Each step down we hoped and hoped out boy would come back through. For a few seconds he did but just as quick he was gone again.

Fast forward to Mother’s Day weekend and our boy is more content and easier to sooth. Still not smiling or laughing but it was the first weekend in months that we had a quiet boy. We decided to start weaning the keppra. This was his first med and first med to fail.