Things went well at Mayo. We just got home yesterday around 4:30pm. We were able to meet with a Dietitian and get some more details about the Ketogenic diet. We don't currently have plans to start the diet but it was good to talk to the Dietitian and find out more about how they do the diet at Mayo. Our current plan is to focus more on finding the right drug for Luella. She just started Stiripentol this morning. Stiripentol is one of the drugs that is supposed to work well for Dravet kids. Unfortunately it isn't currently FDA approved so it's not as easy to get. We had to order it from a pharmacy in New York and we are currently working with Insurance to see if they will cover it. There is also one other drug that we could add - Clobazam. Depakote, Stiripentol and Clobazam together are supposed to be great. We are just starting with adding the Stiripentol to her Depakote. She is also still taking Keppra! Our house looks like a drug store!!
At Mayo on Monday, Luella didn't particularly enjoy getting the leads for the EEG placed - they actually glued them to her head! She cried so hard!! Once they were placed and her head was wrapped up she was fine. They gave us a lot of slack in the wiring and we were able to move around pretty well in our room. The EEG was mostly to determine if Luella's night time twitches were small seizures and to see if she was having absence seizures during the day. Fortunately she is NOT having night time seizures or absence seizures. We still aren't sure why she is twitching so much at night. Her iron levels were lower so in addition to all her other meds she is taking an iron supplement. Low iron can cause restlessness. It can take up to 3 months to build up iron and we've only been on it about a month so we'll see if things start to improve. We were just relieved she wasn't having seizures!
Taking the leads for the EEG off wasn't exactly fun either. Since they were glued on they had to use acetone to dissolve the glue. Stinky stuff!! (Think finger nail polish remover.) We washed her hair there and I scrubbed it again at home. She still has some glue on her scalp but she is tired of me picking on her so we'll work on it later. She has red marks all over her forehead still from the glue/leads.
All in all it was a good visit. We got to talk more with Dr. Wong-Kisiel. It's great how she really takes time to answer all our questions.
Thanks again for all your prayers and support. We really appreciate everything!
At Mayo on Monday, Luella didn't particularly enjoy getting the leads for the EEG placed - they actually glued them to her head! She cried so hard!! Once they were placed and her head was wrapped up she was fine. They gave us a lot of slack in the wiring and we were able to move around pretty well in our room. The EEG was mostly to determine if Luella's night time twitches were small seizures and to see if she was having absence seizures during the day. Fortunately she is NOT having night time seizures or absence seizures. We still aren't sure why she is twitching so much at night. Her iron levels were lower so in addition to all her other meds she is taking an iron supplement. Low iron can cause restlessness. It can take up to 3 months to build up iron and we've only been on it about a month so we'll see if things start to improve. We were just relieved she wasn't having seizures!
Taking the leads for the EEG off wasn't exactly fun either. Since they were glued on they had to use acetone to dissolve the glue. Stinky stuff!! (Think finger nail polish remover.) We washed her hair there and I scrubbed it again at home. She still has some glue on her scalp but she is tired of me picking on her so we'll work on it later. She has red marks all over her forehead still from the glue/leads.
All in all it was a good visit. We got to talk more with Dr. Wong-Kisiel. It's great how she really takes time to answer all our questions.
Thanks again for all your prayers and support. We really appreciate everything!
 |
| Getting leads placed. |
 |
| Playing with mommy. |
 | |
| Still happy! |
 |
| Wrapping a doll's head like her "hat". |
 |
| Playing with daddy. |
 |
| Bad hair day!! |
No comments:
Post a Comment