Heading back to the hospital again…
After Chloe’s last video EEG, we were very hopeful that her new anti-seizure medicine would work. We had a great two week start. She was much more calm during the day and I was able to engage her, play and talk with her more than I have in awhile. We even got a big gummy smile a couple times. There was a change in her behavior that allowed us to work and play with her throughout the day. She also began to enjoy sitting up on her own bum in front of us with little assistance. One day she sat in front of my lap with just my hands lightly on her shoulders for about 20 minutes. It was exciting and we were seeing less of her seizures.
Unfortunately, things changed when she began to have seizures every hour. At first they were mild, but then they grew to the ones that scare her and cause her to cry. For two days, I watched as she would cry after each cluster and then cry herself to sleep to only wake again to more clusters and more tired sleep. Therapy and play time were not going well. As soon as she had a seizure, she was too difficult to calm down to continue. Back and forth with her neurology team over the phone, we decided to adjust her medicine to a higher dose. It calmed her a bit but her seizures are still there.
At this time, we have been asked to re admit Chloe later this afternoon for another video EEG study that will hopefully determine what other medicine we can try. During our initial meeting with her neurologist last week, we were given three options so far. We have ruled out the option for steroid injections as none of us have the heart to do that to Chloe and it would only be a temporary fix. The other options are to try another medicine called Depakote or to place Chloe on a special diet – Ketogenic Diet. Both have serious side effects to be considered so we are working closely with our team and Chloe will have to be monitored over the next few days to week depending on which route we choose.
Since the increase of her medicine at home, Chloe has calmed down a bit and has gone back to having her milder seizures but we need to get all of them under control as they have now begun to affect her sleep and her therapy. During the night, Reth and I will hear a sudden gasp followed by the thump of her arms or legs hitting the mattress and sometimes a short cry. The seizure is quick and most times she is able to fall back asleep after a few minutes but they are not easy for her to work through. We see the same behavior when she is about to nap or just waking up from a nap during the day. Again, it is very scary for her and upsets her whole system. It is not easy to watch as we sit helplessly next to her patting her chest and telling her it will be okay. It’s heartbreaking because I feel like we are telling her a lie since I have no idea what is happening in her body and we have given up on guessing what the next day, hour or even minute will bring.
We are still hopeful. We know the team of doctors and nurses is doing everything they possibly can. It is not easy to go back to the peds floor at the hospital and relive this nightmare but we’ll remain as strong as we can for Chloe and help push her through.
We will keep you posted as things unfold over the next few days. Thank you for all your support.
With love,
Michelle, Reth, Olivia and Chloe
