I had a wonderful and simple pregnancy with Holland. There was no abnormal testing during pregnancy or at birth, and he came on his own with no complications at exactly 39 weeks. It was June 2024 when I noticed his "weird" movements. His eyes would get big and his stomach would tighten, and this would happen multiple times in a row. Thinking back, I do believe he was doing this before. Was it days? Weeks? A month? I am unsure. The movements were so subtle.

Thankfully, with the combination of a mother's intuition and wonderful doctors in Charlotte, the diagnosis came 24-hours later at the hospital. This is a very rare diagnosis, therefore, it can go misdiagnosed. Novant Hemby did a wonderful job and did all the right things. We were connected with Atrium rather quickly to work with a recommended pediatric neurologist, and have been going there ever since. Like any parent, when Holland was first diagnosed, I went crazy on Google - trying to find out who knew the most about Infantile Spasms and where I needed to go for the best care. I reached out to professors at Wake Forest and even one in Switzerland. I was determined to make sure he got the top care. Thankfully, we have a wonderful hospital system here in Charlotte.

During the first few months of Holland's diagnosis, it hit our family hard - mentally and physically. The front line medications are usually either a very high dose prednisolone (steroid) or ACTH shots. The neurology team at Novant Hemby recommended the high dose prednisolone. We were on that for two weeks before a long wean - this made Holland miserable. He wasn't sleeping, could not stop eating, his whole body looked like a balloon. He stopped rolling. He stopped smiling. He was a different baby. I worked nights and my husband worked days. During this time, Holland's immune system was weak, so I had to pull both him and his brother out of daycare. This was such a hard time.

Looking back, my husband and I are shocked we got through it. Holland's pediatrician and neurologist told me Holland is a very "good" case of IS "Infantile Spasms" - not all kids have the same outcome. While it took long weeks of prednisolone, a year of zonisamide and countless PT sessions, Holland is living a "normal" life. He is caught up on milestones and is thriving with his age group in his daycare. We were given a horrible diagnosis, but had the absolute best outcome.  

‍