Tag Archives: sturge weber syndrome



It took over 9,ooo minutes on cell phone, upteen operators and pass-the-buck people to get through to someone who could actually do something to help us get meds for Hubs! The meds were fed-ex’d and made it to us just after he’d taken his last dose of what we had but with only one month’s supply out of a 6 mth script….

Already started the chain of calls for next month. sigh…

FDA puts hold on life-saving medication!


I would like to thank the FDA for putting the manufacture of the seizure medication Carbamiazepene (sp) on hold until mid-October! Thanks to you, the one effective medication that my Hubs is NOT allergic to is unavailable. Thanks to you, after Saturday, my family will be sitting death watch because there will be no way to prevent the grand mal seizures that result when he misses even one dose of meds. If you think I’m pissed, I am!