Today was a tough one! A bit of a back story:

At the beginning, we tried our hardest to avoid giving our son anti-seizure medication. We were so set on CBD/THC oil or something of the like; however, that in itself is one of the biggest battles our neurologist, hematologist and even therapists continue to fight. We did try CBD and while we noticed  E was calmer, it did nothing for the seizures (which, honestly, we expected). We also heard so much about how much we don't know about medical marijuana's effect on a developing brain. Our heart still is on this treatment; however, it doesn't feel quite like the right time. 

We also managed with diet, supplements, and better managing his sleep schedule. This actually DID work for a time (about 2 months and then again for 6 months later on), but his seizure activity got to the point where he was not having a good quality of life. We gave in. We started the slow increase of Keppra and saw how it slowly changed our kid's behavior. It DID work, yet I knew E knew it was altering him in some state by the way he would fight to take it every single time. He was scared to take it and I can only assume it was because of how it made him feel. He would have trouble concentrating where previously he would be able to be on task for 30 minutes at a time (which is unheard of for a 1yr old) to about 5 minutes or so. The things he played with before were no longer of interest and he became mean. Sleep was almost non-existent for all family members and in short-things were rough! We actually started to wean him off of the Keppra NOT under the supervision of his neurologist and, ironically, found improvement with the seizure activity. Weird. About 6 months went by seizure and medication free...and then they came back. 

We then changed to Trileptal. For a while, this was a God-send. We saw immediate improvement with behavior and seizure activity. We had great success with it, but it was short-lived. We eventually had to add a second medication (Zonegran). This helped! ...but only for a while. (I hope you're seeing the battle aspect of this journey now!) We finally figured out that this "game" was all due to E growing EXTREMELY fast!! For those who know my kid, he's 3 years old, 57lbs and is 3'7" tall. He's the size of a 5 year old, sometimes even an 8 year old depending on the child's build! Keeping up with E's growth spurts is hard enough, but when you have to factor in medication for a seizure disorder and hemophilia, things certainly get interesting! 

At our latest appointment, his neurologist suggested we try this "miracle" drug that some of her patients have seen huge success with. The catch was, however, that it wasn't FDA approved for his age range. He'll be 4 in February and this is the age where the FDA approves it's use. Based on his weight, we decided to go for it. We were given samples and are currently on week 3 of increasing his dose. We're not quite to the max dose yet; however, we are seeing improvements. Seizures MUCH shorter than ever before and there's practically no effect during the day since he takes it right at bedtime. We also quickly learned that he has to take it while he's actually in bed, too. Otherwise, he'll get so dizzy he can barely stand...... 

...and this happened today. He went to bed at 11pm last night and had school at 9am this morning. With his morning dose of Trileptal and Zonegran, I can only assume the medicine was kicking his tail and putting him in a state of what I can only describe as "zombie". When we got to school for therapy, he immediately came to lay in my lap and fell asleep. Once his teacher arrived and we tried to get him to walk, he was so wobbly on his feet we thought he'd fall! So, my 150lb-self carried a 60lb kid through the parking lot to the car and in seconds he was OUT. If you ever wondered why some kids with special needs miss so much school, it's likely because of medication and not the condition itself. (I'm just saying this based on personal experience. We've almost missed an entire month!!) ... and then tonight he has a seizure just before bed. We were at the 2 DAY mark and were feeling SOOO hopeful!! 

Once we hit the 2-week mark of being seizure-free, we'll get the go-ahead to lower the Zonegran. That will be a celebration indeed! I absolutely despise how he's on THREE medications at his age, but I know in the long run we'll find the perfect combo to get these seizures under control. If you're the praying type, please pray that this "miracle" drug, Fycompa, works it's wonders for our little/big E! In the meantime, we're almost to $2,000 out of our $12,000 goal for a service dog campaign for E! We're working so hard towards getting our kiddo the service dog he needs to help get all of us through the day unscathed and we absolutely appreciate each and every one of you for your support!