2 Weeks Seizure Free and still counting. Every Saturday will mark a new week since having her last seizure on Saturday, December 24th! She is improving drastically everyday. Cameran is babbling up a storm and is WALKING! Although she is still wobbly she tries to run. She is loving the new way to get around but gets mad when she falls down! Wednesday night she shared her 1st interaction with her Big Brother and sat in the kitchen floor and laughed for a good 30-45 minutes. Luckily we were able to catch it all on film and what an adorable laugh she has I might say! Caleb loves making his baby sister laugh -he kept saying "She laughs just like me now"! It was so precious seeing them together as a team. As you see in the pictures she has been nothing but smiles and just a happier baby girl all the way around.
New Information I received from our Neuro that I thought I would share! I had recently asked what kind of Hypsaryythmia Cameran showed and his response was:
Camerans shows generalized and multifocal so she's got a little of both types. After we repeat the EEG it will determine if the pattern has improved...I think we will see improvement if she is not having seizures now and this is most important.
Generalized would mean that there is no specific starting point in the brain for the seizures. A focal seizure means that it is coming from a specific point in the brain.
The Topamax seems to be going great the second go round. The days we up to the next 1/2 dose is the days we get less response out of her and she wants to sleep alot. But after 2 days she comes back around but she still plays great on the bad days just is a little more grumpy! Her eating has been soso! The bottles she is taking 20-30 ounces, the tables foods and jar foods she is flat out refusing! We are having to hold her down to get it in her since that's how she gets the sprinkle meds. She gets so mad she want even finish her food! We know it is due to the Topamax as the pills have to be crushed and we know they have to taste horrible as she has only been refusing food since starting this. So we have called in the experts from the IS group(who are wonderful) and they gave us a bunch of pointers like: separate her meds
from eat time so she doesn't associate eat time with pill time thus making her refuse the food. So we started with meds being giving w/Applesauce only with sitting on the counter instead of her normal eating place the booster chair so we don't confuse the two! And I have to say its actually starting to work she still won't eat table foods but is getting better on jar foods! She is to start seeing an Occupational Therapist to help with her self feeding since she seems to be having problems in this area. Its the small things like cheerios that she has problems with, she can pick it up but doesn't know what to do with it from there. So we know with a little help she will get there.