Pills,liquids and more!

This week has been out of control! Bailey had her worst day ever with a total of 85 seizures that I know of. I am sure there were more during her sleep. It was horrible yesterday. My poor baby!! I think the problem right now is the medication. We are trying to make some changes in her cocktail and it always gets worse before it gets better when we do this.
So before the change this was the Meds list
    Topamax 3 pills in the morning and 3 pills at night.
    Trileptal 3.5 mls in the morning and 3.5 mls at night
    Vimpat 6mls in the morning and 6mls at night

When that stopped working and we lost control in Nov. we added a 4th medication
It was Clonazepam 1/2 pill in morning and 1/2 pill at night. This caused Bailey to be very upset and aggressive and still no seizure control. So this week we added a 5TH medication Depakote 1/2 pill at night.

This is the new schedule for Meds.
Morning 3.5 mls Trileptal
                6 mls Vimpat
Night
              3.5 mls Trileptal
                6mls Vimpat
                 1/2 pill Clonazepam
                1 pill Depakote
                  I pill Topamax
   Add the Lorazepam for emergency days

The first night Jared gave her all 5 meds it did not go well. Bailey was up all night throwing up and so so sick. The next day we gave her the Depakote at dinner and the rest of the meds at bedtime and it went  much better. But still no seizure control. So yesterday Thursday we added a 6TH medication. It was her emergency med. It only relieved her of seizures for an 1.5 hours. Today Doctor Filloux called (he calls everyday right now) to raise the Depakote to 2 pills a day. UGGG I hate giving Bailey so much medication. It is horrible to watch the seizures and it is horrible to watch her become of vegetable due to meds. Can I just scream for one minute...... I HATE THESE STUPID STUPID STUPID SEIZURES!!!!!!!!!!!!!!!!!!!!!!!! sorry this just sucks. I hope this new increase works. Otherwise the doctors wants us back up to primary children's hospital so they can increase the meds faster but while being monitored. I know that is not what we want so today I am saying a little prayer and these will just go away!! Can't wait for January and make some changes in Cleveland that will get us on the road to a normal seizure free life!!  I am trying to work, maintain the Christmas traditions. buy all of the Christmas gifts and be there every second for Bailey. I hate the thought of not being there for her after a seizure. She just needs us and I can't blame her. It would be scary to blank out so often and not be aware of your surroundings. I know its not realistic to think I can be there every second but I do try. Work just might have to wait. I can always try and go back in February.  I made so many plans when she had her good day and now we take it not day by day but at 10mins at a time. It is crazy how fast these seizures come and go. One minute we are running around laughing and dancing then the next minute she is in a cluster of them I am on the phone with the on call doctor and Jared is starting the car so we can head to the hospital.  Cant wait to say good by to these days.