• Thursday, May 21

cheeks!
Good news today: Nora had a 4-hour video EEG and Dr. Shiloh didn’t see any seizure activity. In fact, Dr. Shiloh said, “I think she’s going to be smart, and I don’t think she’s going to have vision problems.” We’re taking that with a grain of salt, trying to stay optimistic but not over-confident.

By the time the EEG was over, we were more than 50 hours removed from her last dose of steroids and has been on her full dose of Topamax for one full week. We have to continue to watch her closely as we continue to wean her off of other medications.

So, now we’re into monitor mode:

  • She can get all her vaccinations. We’re meeting primary care folks in the Complex Care Clinic at UNC next week, and we’ll figure out that revised schedule with them.
  • We’re getting rid of vitamin B6 and folinic acid over the next four weeks; eliminating one then the other, just so we can keep an eye out for changes.
  • One of the side effects of Topamax is over-heating, and in some kids, no sweating. So, we need to keep Nora cool, and try to make sure she’s sweating.
  • She will have a visit with Opthamology in a couple of months to take a look at her eyes to make sure they’re developing normally. Another side effect of Topamax is glaucoma, so they will monitor the pressure in her eyes.
  • We’ll start some visits with an occupational therapist in the next week or two to make sure that her physical development stays on track.
  • She will follow-up with Dr. Shiloh in a couple of months, primarily to review her Topamax dose as her weight increases.

Nora is four months old and weighs 20.5 pounds. She’s wearing Zoe’s 12-month clothes. Her weight should stabilize now that she’s off the steroids, and her appetite has already decreased. Her mood continues to improve, but her cry is quick and loud. Tonight, Zoe put her hands over her ears and said “Nora! Nora! Nora! It’s ok! We love you!”

sisters

We’re hoping to get her genome mapped through a study that’s going on currently at UNC, and we have a visit with genetics tomorrow. Dr. Shiloh thinks it’s unlikely that they’ll be able to link the anatomical problems in her brain with a genetic abnormality, or at least one that’s known currently. Still, they will have more data, and that can’t be bad.

Nora will likely remain on Topamax for four years, assuming she remains seizure-free. Dr. Shiloh did say that Nora will likely deal with epilepsy, but will hopefully be managed with medicine.

Fingers remain crossed.

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