Bryce was born at 37 weeks without any problems. The first 6 months of his life were great. He was hitting all of his milestones on time and some were even early. Then he got sick in November 2004. He caught a really bad cold and couldn't shake it for months. Eventually he was diagnosed with RSV, but at the same time the seizures started. We had never seen myoclonic seizures before, so we thought everything was related. Once we finally got him over the RSV and realized he was still doing these weird movements, we got him into neurology. He had lost all of his milestones such as sitting up and reaching for things and my sweet, giggling baby boy turned into a lump on a log. By the time he was finally diagnosed on 3/25/05, his clusters were coming very frequently. He was put on ACTH, and then Topomax and Zonegran. We got seizure control with both medications, and his last seizure was on July 25, 2005. Once we got seizure control, his development took off again. He walked at 15 months.
On January 23, 2007 he took his last Zonegran. We had already weaned the Topomax. Bryce has been completely off all of his seizure meds since then. He is still seizure free and AED free to this day.
As he has gotten older, we have seen new problems develop. The ADHD, anxiety, and PDD are all recent diagnoses. Bryce has worked incredibly hard to do things that most other kids just take for granted, like learning to read and write. Things still aren't perfect, but he's making progress, and doing better than anyone ever expected him to. That's all we can ask for.
Your son is amazing Wendy. What a blessing you are in his life. I hope that he keeps working hard to accomplish all he wants in this life!!
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