Hannah had her Keppra level drawn at her Cerezyme treatment on Monday. It was at 9.0. Dr. Brown, Hannah’s neuro, wants it to be therapeutic at 15.0, so she is raising her Keppra dosing to 2.0 mL 3 times a day from 1.5 mL three times a day. The Klonopin will stay the same for now.
I will have to admit that Hannah is sleeping more soundly now that she is off the Haldol (completely as of Friday). Even though she is still tired almost all the time, it is not as bad as it used to be. She still fights sleep INCREDIBLY, but for the past few nights, she has not gone to bed until 11 pm instead of 8 pm! She still is taking her two naps a day, but instead of her second nap being at 3 pm, it is more like 5 or 6 pm now.
We don’t get another EEG for a few months, but I keep hoping that with the removal of the Haldol and the increased Keppra that her seizures are under better control.
On a separate note, we finally received Hannah’s “smart vest.” It is a vest that she wears that pounds her chest for a period of time to loosen the junk in her lungs. It is used a lot for cystic fibrosis patients. Her vest is “yellow.” Initially, I thought she would hate it because she does not like being restrained at all, but the three treatments we have done with it so far she has actually liked it! Weird, huh? I’ll take a video of Hannah with it, but to get an idea of how it works on another baby, click here.
Because the kids are home from school for the next two weeks, we have cancelled most of Hannah’s therapies and appointments with the exception of her Early Intervention service coordinator visits, her cardiology followup for her enlarged aorta, and her upcoming Cerezyme treatment.
Carrie- so glad to hear you got the vest! That is great! Hopefully it will be beneficial to her and sounds like it feels good to her. Noah is completely off Keppra and on Depakote. I love the unintended but very welcome side effect it has: it mellows people out. I was wondering if they considered this drug for her seizures esp because of her anxiety during confinement esp in the car. I know keppra is a great drug for controlling seizures but I am esp happy with the new one. His control is better and he has mellowed out. Noah is very high anxiety and doesn’t like confinement either. Glad to hear you guys are going to chill on vacation. Hope your family has a great Christmas and enjoy your time together!
Carrie- so glad to hear you got the vest! That is great! Hopefully it will be beneficial to her and sounds like it feels good to her. Noah is completely off Keppra and on Depakote. I love the unintended but very welcome side effect it has: it mellows people out. I was wondering if they considered this drug for her seizures esp because of her anxiety during confinement esp in the car. I know keppra is a great drug for controlling seizures but I am esp happy with the new one. His control is better and he has mellowed out. Noah is very high anxiety and doesn’t like confinement either. Glad to hear you guys are going to chill on vacation. Hope your family has a great Christmas and enjoy your time together!
I WISH we could blame the Keppra on her car issues, but she has been like that since she was a year old. So far, they want to keep her on the Keppra and possibly get her off of the Klonopin next and, if needed, move her to another more benign seizure med. I am so glad Noah is doing better! Did you ever hear from any of the specialists?
I have been so crazy busy I have not contacted them its on my to do list..lol. as a single mom I need more hours in the day and to occassionally split in two. I think noah had 3 hospitalizations in a one month span and then many other things hit the fan. His brother was in too for asthma and I seem to always be at a docs office for someone including my dad. I can hardly keep up and by 8-9 pm I want to crash. I asked for respite from the local developmental disabilties board and am waiting to see if I get it. Luckily noahs night seizures have stopped. His myclonic jerks during the day and his movement disorder(mostly tremors) are still quite active. Does hannah take meds for her movement disorder? Some of the video I have seen of her looks like the jerks noah has- sudden arm flailing like someone surprised her. Can’t get over how much she has grown…so glad things seem to be coming. Together for you in vegas. It helps so much to have good people to work with. Please remember to take time for you and just you. This stuff is so draining and I worry about how worn out you seem at times. Lots of hugs and good thoughts your way 🙂