Getting rid of Topomax!!

One of these days I will start updating more regularly so I can keep everything straight. One day. 

The results of the EEG in St. Louis showed that Zack's hypsarrythmia pattern and his infantile spasms are gone, which isn't necessarily a good thing or a bad thing.  It just means his epilepsy has evolved.  His EEG pattern no longer has a specific label, other than simply being "extremely abnormal."  Thanks, we knew that already :).  Since the hysparrythmia patttern is gone, we have decided to start weaning Zack off his Vigabatrin, since that medication is used specifically to treat that type of pattern.  So we have taken him down one step off of that med, but have had to put it on hold since then. 

Since Zack was having so many seizures in the hospital and even after we got home, his ratio on Keto has been going up.  We were checking labs frequently, and even though I was beyond terrified to do so, have had to start decreasing his Topomax because of them.  He has been on this medication nearly his whole life, since he was 10 weeks old, and the last 2-3 times we have tried to come off of it have landed us in the ER. But, I am super excited to say that he has come down from 100 mg a day to 12.5, and by next week will be completely off it with little to no seizure increase (thank you Keto!!) Every time we do a decrease on Topomax, we do an increase on his ratio to counteract the loss of medication.  He has done amazingly well with it, and I could not be happier or more proud of him!! Plus, my sweet sweet boy is coming back to me more and more with every decrease!

Once we finish coming off of the Topomax, the plan is to start weaning the Vigabatrin again, as our neuro only likes to do 1 change at a time so we can see what's working and what's not. It's a bit of a long shot, but if he can come off the Vigabatrin too with no increase in seizures, my amazing little miracle will be med free for the first time since he was 5 weeks old!!! I am wishing, hoping, and praying for this to be a possibility for him, as it could open the door for his development to improve so much!!! If we do see an increase, we are looking at trying Onfi again, a drug that we used to have to get from Canada, but is now available in the states and has proven to be a good option for a lot of kids like Zack (with fewer side effects than most other choices).  But we still have room to go up on Keto first before we have to look at adding another med, which is wonderful!

Sitting up big in his highchair (with no recline mind you!), eating his pears and butter and loving them!! He was even helping hold the spoon!!

In other news, Zack has been doing better and better with his therapies lately (with the exception of being sick the last week and a half) and is surprising everyone with how attentive he's been, his increased eye contact, and overall improvement with body awareness.  His head control is getting back to where it was when he's sitting up, but is so much better on his tummy!! He is back to bringing his hands to midline and his mouth, and some days he does really well with grasping objects (though it's still inconsistent). He is talking like crazy again, rolling to his stomach again (we are working on rolling back over), and he has been awake so much more lately during the day and sleeping for longer periods at night (most of the time)!!

Here is Zack at pool therapy (it is pretty loud because of the pool filter)... Look at those arms and legs moving all around!! He was focusing on his therapists, the ball, and even tried to bring his hands to the ball for the first time EVER! I love when he is this alert and attentive during his therapy sessions!!