An Important Discovery

So, Lily got the ear infection and a cold, so seizures going up was expected, but they were getting worse even when she was getting better. So, we upped the Trileptal and everything went coo coo. She was having over 30 a day...she was having a seizure so often it was difficult to count. Once we figured this out, we stopped the Trileptal and things got a bit better. Since she has had this reaction to both Lamictal and Trileptal, we started to wonder if she was having an issue with sodium channel blockers which can be an issue for those with a missense mutation on the TSC1 gene. Lily's genetic testing for TSC was negative, but the testing isn't perfect. If insurance will cover it, we'll have more genetic testing to see if we can pinpoint some answers. Until then, no more lamictal or trileptal! What would we do without Dr.  Sotero and his fabulous team? It really takes thinking outside the box to treat this disease, and I love it that they always listen to us!! Plus we got to go into the office and see Alice--we adore her!! We have a new med we can start if they seizures don't continue to decrease. It's good to have my sweet snuggler back!!