Jed's journey with infantile spasms
Jedidiah had just turned six months. The initial shock of my prenatal diagnosis of Down syndrome had mostly vanished and we were getting into the groove of early intervention therapies and plugging into support chats and groups (as much as we could during a pandemic). I felt, for a moment, like I could breathe.
Then, one day, I came home from work and my husband said, “I think Jed may have had something that looked like an infantile spasm. I looked up videos of them.” I’d heard these discussed in one of my support chats, and instant worry set in. We reached out to our pediatrician, who told us to keep an eye out and go to the ER if we saw something again.
Two hours later we were being rushed away by an ambulance to the emergency room. Jed had what looked to be a quick spasm right in front of our eyes, and we didn’t waste any time.
We were so thankful to be under the care of one of the best neurologists on the East Coast, and she was very simple and clear when she diagnosed him after the EEG.
She told us, “Jed had infantile spasms. We will do an MRI to make sure it isn’t something more serious but otherwise the treatment is straightforward and usually quite effective when you catch the spasms quickly the way you and your husband have.”
In our case, the prednisolone worked like a charm. It was tough seeing my precious boy blow up like a balloon and lose his vitality and zest while on the meds. But he returned to his usual chipper self after the treatment concluded.
I was lucky to find support early on with a couple of women who had walked in my shoes. We formed a support group through Happiness Is Down Syndrome and they have been a lifeline to me on many occasions.
Jed is now an adorable 3 year old boy and although he we have challenges, he has risen above so many. He is a fighter - just like you and your little one!
If you are walking this path, know that you are not alone. Many have gone before you, and you will come out the other side. Take heart.
- Misty