A patient's family tells us about what it was like when their baby was diagnosed with Infantile Spasms (IS)
Can you tell me about when your child was diagnosed?
I first began noticing different behavior from my son in mid-July, just a few weeks before his 6 month birthday. The first behaviors unusual for his typical day included crying longer and at unusual times for no apparent reason, falling asleep again quickly after waking in the morning, sleeping for only a few minutes and then waking again, trouble falling asleep, irritability, starring off without making eye contact, and a weepy eye (free of discharge or inflammation). After approximately 7 days of these symptoms, he began crying inconsolably while falling asleep at the night for over an hour. The next symptom we noticed was head bobbing and then sleep during a time that wouldn’t usually be a nap. The next symptom was the ‘classic’ spasm in which the baby’s arms lift to the side and the head bobs forward every few seconds, lasting for a few minutes. We began seeking advice from friends and family at this time. We were able to self-diagnose our son when we entered the search term ‘spasm’ into Google and watched videos of other babies with IS. We learned that we had to get an official diagnosis from an EEG and begin treatment immediately to give our son the best chance possible.
Unfortunately, this hospital did not have the medication that we preferred, and because medical based research shows that prognosis is improved with quick administration, we began looking for the medication. Children’s Dallas was the only location in DFW with the medication so we checked-in and were able to confirm the diagnosis, agree on treatment, and begin medication within 24 hrs of arrival.
Receiving the confirmation of diagnosis from a doctor was briefly hard to hear, but almost comforting because I knew treatment was within reach. While the majority of children do not fully recover from IS, a small percentage of children do, and I felt we had a good shot at being one of those success stories.
What is memorable about being the parent of a newly diagnosed patient?
The most memorable part about being a parent of a newly diagnosed patient is how much of an advocate I needed to be for my son. I believed it was my responsibility to do as much research as possible quickly, and to rely on my ‘instincts’ so that I could insist on the best care for him as possible. Had I not been as fastidious as an advocate, I feel my son could have gone weeks and possibly longer without diagnosis and treatment, and ultimately his prognosis and recovery may have been ill affected.