It has been a glorious 2 months since our last neuro appointment. It’s the longest we’ve gone without seeing a doc or going to the hospital since this all began late last June, which is a very, very, very good thing! We didn’t even have to do an EEG this time since we haven’t seen any seizure activity.
Z was highly entertaining in the doctor’s office. I was going to say he was in rare form, but that’s not true these days. He was up and down, wiggling and giggling, and had an absolute ball crinkling the paper on the bed. After a long wait in the room, and discussions with the resident, he was even still awake and going strong when Dr. V. came in. That was fun, because so often by the time she gets in the room, he has long since crashed and gone to sleep. She talked to him, held him, and seemed excited about his progress, as are we!
She even decided to move forward weaning him off his last IS medication… the Sabril. He is officially on only one anti-epileptic drug now, which is a huge feat considering at one point he was on about 7 different mediations and treatments at once for the IS and it’s related symptoms. He did have some small focal seizures during his last EEG, so he will remain on topiramate indefinitely… well, until he is 2 years seizure free on the medicine.
He will go back to the hospital for a 23-hour EEG in a couple of months, just to check everything out. Seems weird that it’s a 23-hour EEG not 24-hours, right? That’s just a loophole with insurance because of how they charge for a full day (ie. 24 hours).
Anyway… things are going well for baby Z at this point. He’s still behind, and even our extended family doesn’t seem to quite comprehend that, judging from some of the questions and comments I’ve seen in email or on fb, etc. It’s hard, and getting harder as he grows, to explain to strangers in a relatively short manner why he won’t hold his own bottle or why he’s not crawling or walking, etc. But, none of that even matters to us after all he’s been through. We’re just so happy to be able to look in his eyes and see a smile on his face!
Baby Z has been taking the Sabril for one full week now. He did 3 days at 3 ml, 3 days at 5 ml, and then transitioned to 7 ml. So far, it definitely has helped reduce the length of seizures, and even the quantity. However, from what I’ve read, helping isn’t enough. So the fact that he continues to have seizures is still a problem for his development, and will cause him to regress.
re·gress (r -gr s ). v. re·gressed, re·gress·ing, re·gress·es. v.intr. 1. To go back; move backward. 2. To return to a previous, usually worse or less developed state.
We need to STOP these seizures! I’ll be chatting with the neurologist tomorrow!
I just had this feeling, so I decided to call SHARE (the distributor of Sabril) to check on our order. Turns out that the doctor left something incomplete on the paperwork that was faxed Thursday, and SHARE faxed it back to them on Friday and never got a response, so they didn’t ship the medication. After a couple calls back and forth, the lady at SHARE checked with their pharmacist and they decided to go ahead and ship to me. It turns out if you call on a weekend, they can ship same day, but if it’s a weekday, it’s 2-day. So, she said if I wanted I could wait till tomorrow (Monday) and it would arrive on Tuesday, or I could order it today (Sunday) and have it tonight (Sunday night). I didn’t even know same day shipping was possible, so I questioned the cost, thinking it was going to be totally outrageous. But, she said that it was no additional cost. ??? Not sure how that can be, but obviously I took that option! It should be here by 9 tonight. It’s 8 p.m. now, and I feel like a kid at Christmas. I just can’t wait! I’m hoping and praying this will work for my baby Z! (I’m still terrified if it doesn’t, but I’m trying to stay positive).
Well, our new neurologist ordered a new medication for baby Z to fight these spasms. It’s called Sabril (vigabatrin). It’s a very specialized medication, so it can’t be ordered from any pharmacy. It only comes from the company itself, through it’s SHARE program. It should be here within a couple of days. I hope it’s baby Z’s magic drug!