EEG

This morning we checked in at MN Epilepsy Group bright and early for Morgan's scheduled EEG (see updated pic).  The process to get all set up - measuring, marking her head and getting all of the electrodes in place was probably more time consuming than the actual procedure.  They had her hooked up for a little over an hour, put some sort of strobe/flashing lights in front of her for a bit but mostly wanted her to lay still and close her eyes.  Haha good luck with a 5 year old- she was not so cooperative laying still or closing her eyes but we got through it.  The fun comes when you get to try to wash out all of the glue afterward :)

We met with the Neurologist immediately following and spoke for a long time about some of the symptoms we have seen over the past few months (headaches, vomiting, unable to wake, seizure like eye flickering and sudden inability to stand or walk on her right leg, etc.- see past posts).  They did observe abnormal activity in her Parietal lobe (area of the brain that processes information about temperature, taste, touch and movement) but ultimately the results were inconclusive. Not comfortable doing nothing at this point but also not comfortable saying for certain she is experiencing seizures.  So, next step unfortunately is to admit her to Children's Hospital for longer term EEG monitoring- specifically they want to monitor overnight and depending on what they see after the first day or so, they would potentially monitor the second night with sleep deprivation..sounds like a blast :(
They only admit Mon-Thurs and with Morgan starting kindergarten in just a few weeks we decided to hold off on scheduling this until MEA break (Oct 18th)...stay tuned. 

Meanwhile we will hopefully get to take a break from appointments other than regular weekly OT/PT and enjoy the last few weeks of summer!  The plan is to let Morgan get settled into her Kindergarten routine and then have a busy fall with 4 weeks of serial casting starting end of Sept, EEG admission Oct 18 and Gait analysis appointments in Oct & Dec.

Gillette's Rehab follow up

Never ending appointments and our crazy life with a special needs child!
Today we had follow up with Rehab Medicine at Gillette's.  It is about 1 1/2 months post botox injections in her right leg and not really seeing results.  We hoped it would loosen up her right ankle and help reduce tone to help with the toe walking.  Overall they are pleased with her progress, therapies, orthotics, etc but looking for something better to get her leg & ankle stretched out and standing/walking flat footed. 
One option we discussed is called serial casting, here is some information on this process: https://www.gillettechildrens.org/your-visit/patient-education/serial-casting-following-a-botulinum-toxin-injection-procedure.  This is something we are definitely interested in doing but since it is summer we will likely try to schedule in the fall after school starts (can't swim and baths will be a challenge)- will try two cast application two weeks apart and could do a third if needed.
Second thing we are going to look at scheduling is called gait and motion analysis- this requires a team of specialists (Rehab doctor, neurosurgeon, orthopedic doctor) and it takes a while to get an appointment so will be getting this on the books for an off school day in the future.  Here is more information: https://www.gillettechildrens.org/conditions-care/gait-and-motion-analysis
We are going to move forward with the first two options (non invasive) but something that was also brought to the table was rhizotomy surgery.  This is surgery on the nerve rootlets in the spinal cord to correct spasticity.  Quite honestly this makes me very nervous to think about doing surgery on her spinal cord but will see how things go with serial casting and leave the option open.  Here is more information on this procedure: https://www.gillettechildrens.org/conditions-care/selective-dorsal-rhizotomy-sdr-surgery/what-is-rhizotomy-or-sdr-surgery