Not going to be Seizure Free??

This video is Brynn in Hyper Mode…
 Brynnon has been on Vimpat for 45 days… out of the 45 days he has had 22 seizure free days. It has cut down almost all of the twitching at night in between seizures. When he started Vimpat it was like an awakening, amazing how awake and hyper he was. This effect lasted for the first two weeks, then we saw a decline… and daytime sleepiness in the third week. The fourth week he was not as hyper, but definitely more awake cognitively. This effect seems to have gone away again this past week… he’s not as slowed as he was so I can only assume it is seizure activity related. Trying to be positive, and stay focused. Last week the I called his Neurologist to update him on Brynnon’s progress. He said he is not going to be seizure free, but because he has shown improvement at this time, we will keep all medications the same as we do  not want to raise the Vimpat dose or change anything until this honeymoon is over. We don’t want to introduce more drugs at this time because we may need those drugs in the future in an emergency situation. I have said it myself, but it stung my heart when he said “He is not going to be seizure free.” Well, I went into Children’s thinking they could get him seizure free. I assumed he wasn’t going to be seizure free and we need to take full advantage of any seizure free nights/days once the 4th seizure med was introduced. We are trying to let him ride his 4-wheeler and just be a child as much as possible. The fact that he has cognitively improved surely helps his quality of life, but it also let’s us see where he really is cognitively. It will be a year since the extended seizure, that took so much of him away, in a few months. He is not the same child, he is not anywhere close to where he was in learning. It looks like he is so slow to go forward the seizures just knock him right back. I still do not know where he is going max out with his IQ and Cognitive Disorder. I will take him back next fall to the Neuropsychologist to see where he is and where he is capable of going. The Neurologist at Children’s mentioned doing testing as well. Perhaps they would do a better job of understanding exactly what is going on and what his full potential will be.      

 Yesterday we scaled back, back, back, way back with Brynn’s Spelling… He has not retained much at all over the last 8 months… Brett (7) is doing very well… he’s actually about a year ahead Brynn (12) in Spelling and Reading,  although they are not too far apart in Math and Handwriting. It was great at the beginning of the year to teach them both the same lessons. Depressing to see Brynn get left behind. 

Tera 22 Brett 7
Tera and I

Brett tells Brynn that he is pretty smart to do everything he does because he has seizures. What a blessing…

Abigail is TWO!!
Brandon (16), Janice (20), Brynn (12), Tera (22), Brett (7) & Bri (20)
Tera (22)
Abigail’s 1st skinned knee 😦

Abigail had her second birthday on the same day as Tera got her Medical Assistant Diploma. It is great to see Tera doing so well. I am so proud of her. She has a great job at a Doctor’s office and is still working at another job nights and weekends. 


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s