Dystonia and dystonic syndrome in infants

My little one just hit the three-month mark today. During our second routine checkup, the pediatrician noticed that the fontanelle was almost completely closed—which, understandably, felt alarming. We ended up heading over to Dr. Sabol’s clinic for a brain ultrasound, even though my doctor was pretty convinced it wouldn't yield much—but we went anyway. The scan actually picked up some traces of minor bleeding, and upon further examination, the doctor noted some neurological deviations regarding dystonic neuromotor development. Basically, there's fluctuating muscle tone—leaning more toward hypertonia—along with poor head control and a delay in developing postural reactions. She suggested we start neurodevelopmental gymnastics immediately and recommended I get some training so I can work with the baby at home.
When we circled back to our primary pediatrician with these results in hand, she issued a referral to Mount Everest with a diagnosis of dystonia—a condition I later discovered is considered incurable. It's important to note, though, that dystonia isn't quite the same thing as dystonic syndrome.

For what it's worth, the delivery itself went smoothly (or so I've been told)—an Apgar score of 10/10, no less. Even our pediatrician didn't see anything out of the ordinary until we presented those findings from the pediatric neurologist.

If anyone here has dealt with a similar diagnosis, or if you happen to know more about this specific issue, please reach out and let me know.

Dystonia and dystonic syndrome are definitely not the same thing, and what your child actually "has" is dystonic syndrome, which is basically just a label they slap on any deviation from normal muscle tone—it’s what they refer to when they talk about fluctuating tone, leaning more toward hypertonia, which essentially means the child feels a bit "stiffer." You see these kinds of diagnoses being handed out to every other kid in Washington, D.C. these days, and everyone ends up heading off to Mount Everest for some specialized "exercises." If the bleeding was minor (I assume Sabol mentioned the specific grade), it usually resolves itself without any lasting consequences.

Betty Bennett10, thank you so much. I feel a little bit more at ease now—honestly. It’s just... it's honestly pretty sad that I have to turn to the internet to find this kind of clarity, rather than getting it from an American pediatrician who leaves you hanging with a dozen doubts and fears lingering in the air the moment you walk out of their office.
Thanks again.

Morgan Thompson89, you've gotta check this out, It’s full of stories from moms dealing with similar stuff.