Robot Morgan and Selective Dorsal Rhizotomy

Hmmm where to start...its been a long month!

Post Serial Casting is going well, Morgan has gained her strength back in her right leg and seems to be walking better and we do see improvement in her right leg toe walking.

Kindergarten, not going so well :( - it seems to be a new struggle daily and there has been a lot of tears, frustration and "feeling sick".  She is struggling with math, writing and letter/number recognition and even things like the cafeteria noise which bothers her/gives her a headache.  On the bright side, we love her teacher and the students all seem to be very kind.  Hoping we can work through this and make some adjustments so she likes school again!

On Nov 29th we had the first of a series of appointments at Gillette's to look at longer term picture and options for her cerebral palsy.  She had a Gait Analysis done in St Paul which I wasn't quite sure what to expect going into, but was pretty fascinating! They went through extensive PT examination and took videos of her walking.  They applied a bunch of reflective balls/sensors and have cameras which track the movement of the reflectors and records when muscles are active and when they are at rest.  The sensors glow which Morgan thought was really cool and she quickly became "robot Morgan" for the day, see picture.  We watched the recording after and this is essentially the same equipment they use to make animated films and for recording athletes so was kind of neat to see.  They also did plantar pressure testing by having her walk across on a mat which senses the pattern and distribution of pressure.  The last thing they tried to do was Oxygen consumption test which  required her to put on a mask and breath into it. The second Morgan saw that mask she freaked out and we never got this done :( - she is quite scarred and paranoid from past surgeries clearly!

This morning we had another 4 hours of appointments at Gillette's in Burnsville for Spasticity clinic.  She met with another physical therapist first for about an hour again who did thorough assessment of gross motor.  We then had a long appointment with several doctors who had reviewed her case together- Neurosurgeon, Orthopedic and Rehabilitation medicine doctors - we spoke for a long time about her medical history and went through exams.  Morgan spent most of her time entertaining them with the play doctor set and doll they gave her which I think won them over very quickly!  This poor doll had several band-aids, broken eyes and surgeries by the time we left!
All of this information gives them an idea of her baseline now and they weigh options for future treatment - continue doing botox injections & serial casting (which wear off and need to be repeated), looks at drugs that can be helpful for spasticity, or some children are candidates for a surgical procedure called Selective Dorsal Rhizotomy (SDR).   They do feel she is a strong candidate for this procedure and believe she will get great benefit from it. 
Information on this procedure can be found here: https://www.gillettechildrens.org/conditions-care/selective-dorsal-rhizotomy-sdr-surgery/what-is-rhizotomy-or-sdr-surgery, short explanation is that they go into the back of her spinal cord and cut sensory nerve rootlets that are contributing to the abnormal muscle activity.
This was a lot to take in and we discussed the pros/cons and risks of moving forward (and what her future looks like if we don't) with this and the surgery itself at length with Gillette's neurosurgeon. The recovery from this surgery is very intense.  The surgery is 3-4 hours and requires a 4 to 6 week admitted hospital stay and daily therapy post discharge. She would essentially have to re-teach her body how to move again- to roll over, sit up, crawl, walk, etc.  If spasticity isn't treated at all, it can lead to more complications down the road like short muscles and bone deformities. 

The next step if we should decide to move forward is to schedule with Morgan's neurosurgeon (he has surgical rights and does this surgery at Gillette's with the rehab doctor)- she needs to have her shunts assessed and ensure they are working (a couple of ways to do this but typically also invasive from what I understand) as well as full body MRI.  Her shunts drain her cerebral spinal fluid (CSF) so if for some reason the pressure wasn't working optimal on either shunt this could cause issues with CSF leakage through incision after this surgery (versus draining through the shunts).  

Pat and I will sleep and pray on this, do our homework and speak to other families who have undergone SDR and make a decision at some point in the near future.  Looking forward to some time off work and school and to celebrate the holidays with family!

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.

Vision Therapy & Rehab

week 2 of crazy appointment schedule!
Wednesday we had a vision exam follow up appointment and met with the vision therapist.  Admittedly been terrible about having her wear her new eye glasses daily (not an easy feat with a 5 year old to keep them on her!).  They adjusted her fit (3rd times a charm?) and tried on several more pairs of glasses but ultimately kept the 2 we purchased with some adjustments & a plastic piece to fit behind her ear.  Vision therapist did some assessment and was able to get decent testing (was worried about her comprehension at this age still) and this is something we will consider to start vision therapy in the fall.  There is quite a discrepancy on doctor's opinions for vision therapy and little research that shows medical benefit but I have spoken with many contacts who believe it helps their children immensely.  We are trying to address her visual processing and delays with writing, coloring etc. 
Thursday she had a rehabilitation dr appointment for botox injections in her right leg again.  We decided to try this at Children's MN this time instead of Gillette's and while our experience and communication with this Dr was MUCH better I was extremely disappointed when he told me right before we left that he was leaving Children's :(...back at square one.  The challenge has always been after the injections and the lack of follow up to know if this is beneficial and the correct dosage, etc. - need to decide if we will now stay at Children's with their NP or go back to Gillette's rehabilitation dr.  The appointment itself went fine - they do this in the short stay unit so that they can give her nitrous (which is actually semi-entertaining) and the injections are painless.  Morgan HATES fruit and anything fruit flavored so also a bit entertaining to having the nurse shove a bowl of fruit flavor smuckers lip stuff in her face for her to chose which flavor she wants on the nitrous mask- wish they would put this in her chart!  I am not sure if I have mentioned this in a prior post but her OT once mentioned her aversion to fruit (which happened suddenly after a shunt revision) could very likely be related to this fruit flavor on the nitrous mask...interesting! 

Neuropsychologist Evaluation

This week Morgan's unusual behavior continues- headaches and two mornings of vomiting but then feels better.  Not sure what is going on but we have several appointments scheduled this month and decided to wait to get into her primary Neurosurgeon (he was booked and on vacation) until Jul 2nd. Will take her in sooner if it becomes more emergent.
Today was long awaited pediatric neuropsychologist evaluation.  This is something that was suggested to us a while back but waited until she was old enough to be evaluated.  The appointment was a few hours long - I wasn't able to sit in the room while they were evaluating but a series of tests and questions for Morgan while I filled out a very long questionnaire (in addition to the evaluations and information already sent in by parents, teachers and doctors).  We are hoping this evaluation will shed some light into her abilities and how best to teach and work with her behavior. 

Dance Recital & ER visit

Last night Morgan was complaining of headaches and grabbing her head and we chalked it up to a long day of playing after OT & PT. Then again this morning she woke up with a headache and wouldn't get off the couch for most of the morning.  I asked her if she wanted to go to her dance recital or skip it (an adaptive dance team she has been doing since Sept 2017) and she was so excited to participate she jumped off the couch to change into her adorable yellow tutu custom.
In the car on the way to the recital she fell asleep and I had to carry her in to meet her dance team backstage (unusual).  She woke up a bit and I forewarned the instructor of her condition, gave her my cell no in case of emergency then joined the other parents and my husband and son in the stands to watch.  It seemed like she danced in her dance recital as well as she typically would and we eagerly awaited her finish at the finale a few songs later.
I could tell immediately something was off when Katy, her dance helper, carried her out on stage for the finale sleeping in her arms. She was slumped over her body and would barely lift her head to acknowledge the thousands of people staring at her on stage.  I scurried down to pick her up after the finale and her teacher and helper explained to me that they could barely keep her awake backstage the last couple of hours.  I lifted her limp/lifeless body onto mine and walked out to the front to meet family & friends.  We could not wake her during this time and after several minutes decided best to take her in.
We checked her in to ER at Children's in St Paul and during this time she was still mostly unconscious.  About 30 mins later after she was settled into the hospital room (nurse took vitals, etc and scheduled scans) she perked up like nothing happened.  We proceeded with the MRI and Xrays, took blood work and everything looked normal.  Nurse and ER doctor agreed her behavior was unusual but after discussing with neurosurgery they agreed to discharge her as long as we set follow up appointment with neurosurgery.  Hooray for no overnight hospital stay but UGH for her odd behavior lately!