r/infantilespasms

My son was diagnosed with IS last November and responded to initial steroid treatment so has been spasm free for almost a year now. Genetic testing showed no cause so he has a cryptogenic case. He hasn’t had any vaccines since because I have just honestly been terrified in a relapse. His neurologist said he could continue receiving vaccines but I am still cautious as his previous neurologist (who moved out of state) said that although vaccines do not cause IS they do cause inflammation which can be a trigger to those who are predisposed. I’m just wondering if anyone else has faced this dilemma? Specifically the MMR? Any HELPFUL advice is appreciated. I also know this is a controversial topic & I am not anti vax he had all of his shots aside from DTAP prior to his diagnosis.

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My baby is 4.5 months old. Today, shortly after waking, she made about 4 very gentle forward head nods in a row, with maybe half a second between them. It wasn’t a forceful head drop or a whole-body jerk. She was sitting upright, looking around/aware, and then seemed completely normal.

This has happened only once and I’ve never noticed anything like this before.

I’m absolutely terrified because she is in the peak age for infantile spasms and I keep reading that they happen in clusters.

Does anyone have experience with gentle head nodding like this that turned out NOT to be infantile spasms? I’m planning to show her pediatrician, but I’m really struggling with the anxiety right now. Any experiences or advice would mean a lot.

My 6 month old has been exhibiting so unusual movements that could be infantile spasms. Our pediatrician referred us to a pediatric neurologist who can’t get us in for an appointment until February!!! We’re trying another place that might be able to get us in sooner. But should we just go to the ER? What capabilities do we need to make sure the ER has? And is that info online or should I call about it?