Hypo-WHAT-ia? Ellie's Health Story

Our journey into Hypotonia Land began very innocuously.

Ellie was about a month old when I noticed her left hand shaking, back and forth, ever so gently. The first time I saw it, I wrote it off as me holding her wrong and that I must have pinched a nerve. Then, I saw it happen again. Being a nervous new mom, I asked my mom about it. She got this look on her face - like the whole world had ended. I thought I must have done something terribly wrong; I must have hurt Ellie. But Mom said she had seen Ellie do this quivering, too; not that I'd hurt my baby girl.

I said if she did it again, I was taking her to the emergency room. I thought she might be having seizures. You see, she kept staring off into space. She never really looked at me; never gazed into my eyes with newborn bliss the way all the books and magazine articles said I should expect her to. In fact, on our second day home, I told my mom I thought Ellie was autistic because she just didn't seem to connect to the world at all. Well, after mom and I spent a couple of hours discussing all we thought might be wrong with Ellie, she started shaking again and staring off into space. So, I put her right into her little car seat (here's a clue your baby has hypotonia - she's a newborn and oozes out of her carseat) and rushed her off to the hospital.

When we got to the emergency room, Ellie was sound asleep. The ER doc didn't notice anything unusual, and discounted the "seizure" and Ellie being jittery because I took cold medicine while nursing her. My mom and I were advised to take Ellie home and give a bottle for twenty-four hours, and she'd be fine.

Well, after twenty-four hours attempting to drink from the bottle, Ellie had another seizure, and it was obviously a seizure this time. So, back to Tampa General we went. We saw a different ER ped this time. This one said there was no WAY my taking cold medicine and nursing Ellie would cause her to have any kind of a seizure. Ellie had two episodes in the ER that night, one of which was witnessed by a nurse. Finally, proof that I wasn't just some overprotective mother!