Our count of seizure free days continues and I couldn't be happier to report that we've had only one seizure in the last 7 days! It's unbelievable.
I feel especially elated due to the fact that we had just settled in to the realization that the next medication we were going to add would take 3 - 4 months to see any results. Thankfully, we didn't even need to add the third medication. After seeing Josie's neurologist on January 30th, we increased her Epilim to 8ml twice per day. Four days later, no seizures! I am so happy that we didn't even have to add the third medication and start trying to figure out the wean of the first medication. I feel so blessed that it worked! We have joined an online support group for parents with children who have Doose Syndrome and many of them have tried 9 + drugs, and are now on the ketogenic diet. Something we weren't looking forward to but were preparing ourselves for.
We both realize it may not be permanent but our confidence builds with every day that is behind us without a seizure. Josie seems brighter in her personality and we agree it's due to the fact that she is uninterrupted. She can have a full conversation without seconds or minutes of her brain shorting. She is happy and less irritable. She is much less frustrated with day to day tasks and has been enjoying playing at home.
We're having her wear her helmet on hard surfaces or if she is going to play outside. Who knows when we'll feel comfortable enough to let her stop doing that but she digs her helmets so it's a non issue at the moment. The panic instinct is still ingrained in me. Jake was joking saying we would probably have Post Traumatic Stress Disorder. I still find myself jumping if she gasps as she used to make that noise right before having a seizure. Or if something falls to the floor because with many of her drop seizures she would have something in her hands and due to the loss of tone in all of her muscles she would drop it (and she would drop). My cat like reflexes aren't going to know what to do now! :)
I feel especially elated due to the fact that we had just settled in to the realization that the next medication we were going to add would take 3 - 4 months to see any results. Thankfully, we didn't even need to add the third medication. After seeing Josie's neurologist on January 30th, we increased her Epilim to 8ml twice per day. Four days later, no seizures! I am so happy that we didn't even have to add the third medication and start trying to figure out the wean of the first medication. I feel so blessed that it worked! We have joined an online support group for parents with children who have Doose Syndrome and many of them have tried 9 + drugs, and are now on the ketogenic diet. Something we weren't looking forward to but were preparing ourselves for.
We both realize it may not be permanent but our confidence builds with every day that is behind us without a seizure. Josie seems brighter in her personality and we agree it's due to the fact that she is uninterrupted. She can have a full conversation without seconds or minutes of her brain shorting. She is happy and less irritable. She is much less frustrated with day to day tasks and has been enjoying playing at home.
We're having her wear her helmet on hard surfaces or if she is going to play outside. Who knows when we'll feel comfortable enough to let her stop doing that but she digs her helmets so it's a non issue at the moment. The panic instinct is still ingrained in me. Jake was joking saying we would probably have Post Traumatic Stress Disorder. I still find myself jumping if she gasps as she used to make that noise right before having a seizure. Or if something falls to the floor because with many of her drop seizures she would have something in her hands and due to the loss of tone in all of her muscles she would drop it (and she would drop). My cat like reflexes aren't going to know what to do now! :)
Three cheers for Josie! I'm glad she has improved so much!
excellet news!!! this makes me so happy for you guys.
Wonderful! My family and I are so excited for you, little Josie, and your family! Have a wonderful week....send us some warmth and sunshine, would ya?
Brandie,
I'm so sorry to hear about all that you and your family have been going through. It must be so hard on a 2 yr not knowing what's going on inside her body and for you to see it all happen. I can only imagine your pain and pray that this is the start of a new beginning for Josie. I'll be thinking of you.
Sincerely,
Amy
Brandie and Jake, those have to be the cutest little girls I have ever seen. I would love to see them in real life and just squeeze on them! Looking at Sophie is like a blast from the past! It's like seeing you again as a little girl. That is so fun. Brings back lots of memories playing in your dirt pile in your back yard, and your COOL yellow bike. I'm so happy that your little Josie is doing well. I've never heard of this Doose Syndrom. I'm definitely going to check it out. That has to be a major worry. I can't imagine. Thank goodness there is modern medicine! I hope and pray that she will continue to be "free". I can't believe how much I love them, and I only recently found out they exist. It's amazing.
I'm so happy for all of you. I can't imagine the relieve you must feel. We love & miss you guys!
Yay - awesome news!