EEG Day 2

Another day trying to keep Morgan occupied and entertained.  They monitored overnight again on Friday and we were discharged Saturday morning around 10 am.  The neurologist went through the last 24 hrs of results again and just a couple of spikes but nothing concerning as was the day before.  He prescribed Diazepam to have handy just in case she ever did experience a seizure and it lasted longer than 3 mins. So grateful for uneventful stay and that we do not have another diagnosis at this point! 

Admitted EEG Day 1

We checked into Children's about 9am yesterday. It took a while to get situated but we are told we have the biggest/best room on the floor with a good view of the garden :).  
She was not a fan of the blower which dries the glue for the electrodes to stick to her head (she freaked out and pulled several off on more than one occasion) so that was a fun couple hours just trying to get set up.  The goal is just to monitor her with regular activity and they have this feeding to the front desk with video monitor on her also.  We spent the rest of the day yesterday just hanging out- tv shows, movies, play doh, arts & crafts etc. At least had a decent night sleep since they are not coming in every couple of hours overnight like past hospital visits!

The Neurologist rounded this morning around 10 am and gave an update that her brain activity is looking fine.  They are not seeing spikes in her parietal lobe, the "abnormal brain activity", that they have seen on the last two EEGs.  So this is good and hopefully means her brain has "calmed down" over the last couple months which I think her behavior and lack of "episodes" shows.  The problem with seizures, however, is you never know when they may hit so he was concerned they will likely crop up again and suggested prescribing an "emergency medicine" to have handy at home just in case.  He described this like an electrical line in a house, the spikes are like the line "sparking" and you never know when or if it could start a fire (seizure).  Meanwhile they would like to keep her one more night/day just to continue to monitor. Will discuss more tomorrow morning after more results. 

She was getting very stir crazy this afternoon and wasn't allowed to leave the room, the monitor is plugged into the wall with a long cord so she could only walk around in the room :(.  Thankfully Breannas Gift org/volunteers (breannasgift.org) came by with a fun mask craft and we were able to get the cord out to the hallway tables so she had fun doing that.  A couple of hours ago they came through with a battery pack so she got about an hour in the kids play room also and doing much better now!
Updated pic from today

Kindergarten & Serial Casting

Three and a half weeks in to Kindergarten and one week with her cast on...thought I would jot down some updates on Morgan!

Kindergarten (all day Spanish Immersion in PL) was a bit of a struggle the first few weeks but getting there!  I have received a phone call or email from the school every day except 2 at this point - various things regarding her orthotics, glasses, long walk & stairs are a problem when going from classroom over to Westwood school next door for gym/art/music (construction in progress), she had a meltdown after getting wet one day, new para wasn't hired, she fell, etc. etc.  Hopefully they are just being overly cautious as they get to know her and I think still ramping up their Special Ed at this school.  The good news is I think Morgan really enjoys it and seems so grown up with her stories after school :) and I love that she gets transportation straight home (when I am not traveling) so I get to be first to hear about her day.

Last Monday, we went into Gillette's for her Serial Casting.  They casted her right leg only and of course she picked a pink cast.  They were able to get her ankle to near 90 degree in the cast.  She will have this one on for two weeks and next Monday we will go back in to remove and put a new one on with even greater flexion for another two weeks. She does still toe walk in her cast somehow but they said this is pretty normal and the next cast will be much harder for her to toe walk in.  We scheduled a follow up with physical therapist and will likely have to have her orthotics redone after the casting also.  Morgan actually doesn't seem to mind it- I thought it wouldn't be so cool after a couple of days but I think she gets a kick out of the attention and everyone commenting on her broken leg!  Baths are a challenge but turns out they make rubber cast covers and sell them on Amazon, I highly recommend!    

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
        

Nonverbal Learning Disability

Today I met with Children's Dr to review Morgan's Nueropsychological evaluation. Add another diagnosis to the list..Nonverbal Learning Disability (NLD) :(
While this was disappointing to take in, the meeting and information he provided was fascinating and explains a lot of the behaviors and delays we see with Morgan so happy to have some insight and recommendations on how to best approach parenting and teaching situations. 
If you are interested in the specifics of what this means, keep reading, will try to summarize the key points of our discussion!  NLD is a disorder which is usually characterized by a significant discrepancy between higher verbal skills and weaker motor, visual-spatial and social skills..  This is an area we have been trying to pinpoint for months/years but it explains a lot of her visual spatial and slow processing time.  She is a strong VERBAL learner but therefore the use of visual cues (which is what her IEP and therapists often turn to in order to assist with processing/facilitate responses from her) do not help her with the absence of verbal instruction/scripts.  Basically we will need to focus on providing verbal and detailed language instruction for her to learn and follow. He provided her evaluation results and so interesting that all of her language and verbal memory functioning and comprehension is average for her age but all of her visual spatial, reasoning, and processing are listed as low average or mildly impaired.  So now what?  He gave us a very detailed report with some extremely helpful recommendations, books, tools, apps, music therapy, etc. - lots of reading and work to do here and hoping to implement these approaches and see some positive results!  He also has information and recommendations for her teachers and therapists and offered to take the time to speak with them or meet with them face to face - very impressed with this offer!  This is not a disability that will go away but identifying it at her young age is a positive thing and can learn to manage it to hopefully see that gap between her verbal and visual processing shrink versus grow over time.  We will meet with neuropsych every 2 years to reassess/test to check on progress and address any concerns. 
 

Neurosurgery follow up

Long awaited Neurosurgery follow up appointment today.  We spoke with Dr Petronio at length regarding some of the behavior we have been seeing, her scans, symptoms (headaches, lethargy, vomiting), etc.  I had a lot of questions after attending the Hydrocephalus Association convention last week! 
Her ventricles look fine, slightly smaller 4th ventricle but nothing to be concerned about and her laterals about the same (her shunt was set 20 higher since January so was wondering if that impacted but doesn't appear to have).  He did explain though that sometimes there will be situations with shunt malfunction that they may not see on scans - I was aware but surprised that apparently this is pretty common.  Scans can show the volume of fluid in her ventricles but do not give indication of pressure.  One option if she continues to have issues is to bring her into short stay and have them tap her shunts so that they can measure the pressure.  We will decide if this is something we want/need to do but of course with this comes some risk of infection so would like to hold off unless absolutely necessary. 
He had read her charts from the rehab doctor and spoke about some other behavior which makes him concerned that she could potentially be having seizures (not the first time we have heard).  He would like us to revisit this and referred us to the MN Epilepsy Group to schedule another EEG (she has had one but several years ago now).  So we are going to start with this and hope/pray this is just something to rule out!
Other potential causes may just be intermittent shunt blockage (constipation can even cause this) or migraine headaches.
He also offered to refer us back to a different Gillette's rehab specialist and assessed her right leg/ankle after the botox injections which he agrees is not the best we can get - mentioned to ask about potentially serial casting since her orthotics don't seem to be helping as much as we would like to prevent toe walking and inflexibility of her ankle.