Checkup… and weaning OFF another medication!

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!

 

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Sabril 11-day Update

I talked to the neurologist on Monday.  Well, I technically talked to her nurse and her assistant.  But, we adjusted his night-time dosage of Sabril to 10 ml.

Yesterday he had a really good day.  Hardly any seizures!  Plus, I started to see more activity on his right side which had definitely started lacking.  (If you remember, before all this started, he was favoring his right side, and then over time, was hardly using that side.   He had even started slumping to the right in his high chair, as if he didn’t have the strength to hold up that side.  It made sense, since the focal activity is in his left brain.  But, yesterday, all the sudden he started using the right side again.  It’s not like he automatically has all his motion back, but it was a definite improvement!  He even had a {very brief}  smile for his dad.

Today was good too, but not quite as good as yesterday.  He was still using his right side.  But, he did have a few more seizures, although they were still  just the quick ones.

I hope we continue to see improvements!  We’ll see what the EEG says when we do all the testing next week.

Sabril 7-day Update

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.

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!

Down to 3 meds… No more Trileptal

We’ve been transitioning off Trileptal all week, and as of today, we’re done.  So, we’re down to 3 meds:  Sabril, Clonazepam, and Keppra.

I’ll check in with the doc next week about the dosage instructions for transitioning off of Clonazepam, and then Keppra.

I’ll check in with her about the dosage of Sabril too.

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.

Not perfect, but we have HOPE!

Well, after baby Z got his second dose of Sabril, which was yesterday morning, he started crying and screaming, and continued all day long.  Poor little guy.  He was absolutely miserable.

I called in to the neurologist’s office, talked to the nurse, and my neurologist promptly called me back.  She said some people are more sensitive than others, and she had me reduce the dosage and bring him up more slowly.

The good news is that he has hardly had any seizures, and the ones he has had have been very minor!  So, we have HOPE!

The Sabril is here! The Sabril is here!

I was SO excited last night when the Sabril finally arrived.  It was almost 9 p.m. and dark, and the delivery truck was way down the street trying to read house numbers.  I was literally flicking our front light on and off and even walked out to flag him down.  I’m sure he thought I was a crazy woman, but he was like Santa bringing gifts!

Zane got his first dose (3 ml) last night and another 3 ml this morning.

I hope this works!  I hope this works!  I hope this works!