1 Month...

...since Miss K was taken off of the Amiodarone and...

She has done unbelievably awesome!

Just a few short weeks after taking her off the medication we noticed some things different in her behavior and health, good things :o):

She is WAY less constipated (see Side Effects).  The poor thing has been so constipated since getting the Amiodarone and Propanolol into her system.  We finally had to resort to giving her Miralax for relief when the Prunes and Applesauce quit working :o(.  But within a few weeks of being off the Amiodarone she started having more regular bowl movements.  They are still not as soft as they should be for her age but they are not as hard and definitely not as painful as they used to be.  We have been able to cut the Miralax down to as needed instead of daily :o).

She is less sleepy!  It was so hard for her to transition from 2 naps a day to just 1 but we had to do it because she just wasn't going to bed at a decent hour at night while taking 2 naps.  While on the Amiodarone she just wanted to sleep, a lot.  Since taking her off of it she has been just fine with taking only 1 nap daily and going to sleep at a great hour for bed time :o).

She has been so much happier through the day, very hard to believe for this baby since she has ALWAYS been the happiest baby around but she has gotten HAPPIER.  We've had less crying and tantrums than before, and I completely attribute this to no longer being as tired as she used to be.

Within a week of being off the Amiodarone I did notice her heart rate went up.  She used to be in the steady 90's when resting/sleeping and around 105 BPM when active but after taking her off the Amiodarone her heart rate went to around 107 BPM resting/sleeping and around 110-115 when active.  And when she'd get upset/worked up while on the Amiodarone her heart rate always stayed around 105 BPM, now when she gets upset/worked up her heart beats quite a bit faster at around 125 BPM but this is FAR from being SVT in any way so I have not worried, it's actually more normal for a baby/child to have a higher heart rate while upset.  At first I worried but then I remembered something important from the beginning of our journey with Miss K...her EP Cardiologist was never truly satisfied with Miss K's heart rate before, he was a bit concerned about how slow it was and confided in us that it was either the Amiodarone or a combination of both medications that was making her heart rate so low.  Her QT Intervals were a bit long as well.  Since we haven't had an EKG since taking her off of the Amiodarone we don't know how her QT Intervals are now but it actually seems reassuring that her heart rate is faster now.  I feel her EP Cardiologist is going to be happy with how her heart is doing without the Amiodarone.

And of course having one less medication to give in the day is so much easier on all of us!  The fact that it is the most dangerous medication that she is no longer taking makes us even more happy about all of this :o).

We have an appointment to see her EP Cardiologist near the end of October.  It was supposed to be scheduled 1 month after her last one in August but they only had 2 appointment availabilities when I called, one in September and one in October, the October one just seemed more appropriate.  I wanted her to be off the Amiodarone long enough to show real results when we went back in and this will be the case going in 2 1/2 months after stopping it.  We are excited to see what the EP Cardiologist has to say.

Home 12-6-11 Miss K is 4 Months Old

Miss K saw the Neurologist today: The Doctor agreed with me, she's been on the same dose of Keppra since she was 2 weeks old and has gained almost 8 pounds since then. They usually up the dose according to weight to keep seizure activity under control but Miss K's hasn't ever been upped and she's NEVER had any seizure activity since that day in the hospital. The Doctor and I agree that we've pretty much been giving her water these past few months and she wasn't having seizures and isn't going to have any. She's perfect in the neurology department :o). She passed every neurological test the Doctor did on her and we're going to skip the MRI because she doesn't need it :o). Miss K is no longer on the Keppra, as of today we've been told by the Doctor to stop giving it to her :o).

Miss K also saw the Electro Physiologist today: The Doctor says she looks great. Apparently her EKG showed her QT intervals are kind of long compared to what they should be but he's not worried yet, he's just not going to up the dosage on her medications right now, which he's happy not to do since she hasn't had any episodes of SVT since he last upped the dose. So the plan is to keep her where she's at on her medications and go back to see the Doctor in two months when he'll take her off the Amiodarone and we'll see what she does without it.  She'll most likely stay on the Propanolol until her first birthday, possibly longer.  He has opted to skip setting up an Ophthalmologist appointment as long as we get her off the Amiodarone at 6 months and keep her off of it.

We're so happy to be seeing so much progress here! And very glad to have one less medication to worry about daily :o), not to mention one less medical problem to worry about :o).

Miss K now weighs 13 pounds 5 ounces and is 23 1/2 inches long.  She's taking 1.5 ML Propanolol every 8 hours and 6 ML Amiodarone once daily.  We are still SVT free!  And her blood tests are still coming back perfect (See Side Effects).