February Update

Willow has had both an eventful, and yet quiet month. As I talked about in the last post, Willow started the month with seizure activity. We thought it was shunt failure, the ER doctor felt it was febrile seizure (after fast MRI showed no changes in her ventricles). We had seen the neurosurgeons office after a nuclear med study was done, and that came back clear. So, this last Thursday we set out for an EEG and a follow up with our neurologist.

Well, the EEG went well, she did all that she was asked to do, all while talking away to the tech. and asking all kinds of questions. It started late, so of course, finished late. We went straight from the EEG to our follow up appointment instead of an hour break between the two so that hopefully the PA whom we were meeting with would have had time to read some sort of results/report.

Instead, we got a pretty good check up with her; and honestly a lot more information than I have ever received from that office before! She explained to me that based on the events, Willow most likely had three seizures that night. Only one of them being visible, two at home in our lazy boy.  She feels that the great break we had, where Willow was coherent and talking again and 'back to baseline' was the middle between two seizure events. I am still trying to learn, read, and research the world of seizures; so unfortunately still learning the language. So, please forgive the preschool verbiage in that manner. :) But something about atonic seizure is what she believes she had when she was slumped over in our chair, and a tonic seizure when Jon was placing her in our car. Regardless of type, we were prescribed diastat as her rescue seizure med. If she has one more than five minutes we dose, if she has three (regardless of length of time) in 24 hours, then we dose.
We are waiting for the results of the EEG, and talked at length the options that may play out in front of us once results are received. There is the chance that we have to give Willow keppra, an anti-seizure medication, twice a day. There is also the chance that nothing will show on her EEG and we won't start an anti-seizure med at this point, but will keep diastat on hand. There is a small chance that this was a febrile seizure as the ER diagnosed. Our PA said that all children grow out of febrile seizures around five or six years old. That is right where Willow is at age wise. LOL  So, if the EEG shows no electrical bursts (or seizure activity), then it was most likely febrile, and we won't treat that daily. If there are bursts, then we treat.

So, here are some sites I am reading up on about seizures. If you have some awesome information or insight on keppra or seizures in general go ahead and share :) I love to get as much info as I can.

Types of Seizures Epilepsy site

Febrile Seizure Fact Sheet NIH

Seizures & Epilepsy in Children John Hopkins

First trip to the Public Museum 

She wanted me to take her picture's so she could see what she looked like as she was getting set up for the EEG.   These two are almost inseparable, and it is so adorable.

I do indeed love someone rare, each and every day. If you are ever looking for more information, please check out the Pediatric Hydrocephalus Foundation, or look us up on Facebook here in the state of Michigan.


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