It’s always somethin…

Yesterday I also mentioned to the neurologist that baby Z had noisy breathing, and asked if that was a side effect of the new medication (Sabril).  She said no, that he was probably coming down with something, and that I should take him to his pediatrician.

I took him this morning and she could hear him, but checked his pulsox, which was 100%, so he wasn’t having trouble getting enough oxygen.  She used the tongue depressor to check his throat, and looked in his ears and nose.  She didn’t find anything, so she sent us for an x-ray of his throat.  When she got the results back from the lab, it said that the x-ray picked up something that was either an infection or something developmental.  She looked down his throat again, and said she doesn’t see an infection, so she referred us to an Ear, Nose and Throat (ENT) doc.

So, we’ll be heading there next week.


Always Verify!

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).

New Medication: Sabril (vigabatrin)

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!

Surprise, Surprise. The Dr. didn’t listen.

We went to our appointment with the neurologist today.  But, it didn’t go as planned.

I brought up some of my questions about Infantile Spasms, how his seizures have changed, the video I had as evidence, and the fact that he isn’t responding to any of 3 medications.  She explained that the EEG doesn’t show the hypsarrhythmia, and that we just don’t have the right dose of the right medication yet.  She was nice, but at the same time, dismissive of me.  I get it.  I mean, she’s a neurologist, and I’m just the mom.  But, you know what?  She is *just* a neurologist.  I AM THE MOM.

Something isn’t right.  I wish she would listen.