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KB's Story (as told by her mother)

Our 2-year-old daughter has been having Hypnic jerking since she was 4 weeks old. She’s had 3 EEGs, and seen 5 neurologists, 2 sleep specialists, a movement disorder specialist, and a hematologist. I discovered I was anemic in pregnancy, so we followed up by giving her an iron infusion. We gave 3 doses of iron a day to be sure, and eliminated all dairy from her diet. Still, they persist. No one has answers. It seems no one cares.

I can’t get anyone to conduct any genetic testing. Most of our team is through CHOP, the premier children’s hospital in the country. At our first appointment with the head of the entire sleep specialist clinic, the doctor said she’d never seen anything like this (even though I’ve now seen many videos of children doing this in support groups). In our follow-up appointment, she suggested we alter her bedtime routine and read the story in her room instead of on the couch. It’s insanity.

Our daughter's Hypnic jerking is most often violent. Most of the time, she cannot sleep at all. Babies her age need 12-14 hours of sleep. When this happens, she’s up (as are we) from 8pm to 6am. She’s 2yrs and has panic attacks because of how frightening it all is. She cannot talk to us about it. She only yells, “hurts” and “want sleep.”

We really need some help.

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