Hi Everyone,

Maddie’s seizures have been a major focus recently so we’ll start on that topic.  So much has happened and changed since our last blog post and even now, Maddie’s still going through quite a bit of change as we’re trying new ways to control her seizures.  In the couple of weeks following our last blog post, we continued to adjust medicines and dosages and although there was some improvement, Maddie was still having 3-5 convulsing seizures each day.  At one point, she did show some more moments of alertness so we were able to continue working on some therapies.  See pictures below!

Tummy time!

Two hands holding toys!

New Neurologist Suggests Steroids

In early October, we started seeing a new neurologist who specializes in reading EEG tests.  Although Maddie had a routine EEG (~30 min) done earlier this year, he requested that we have an overnight EEG done at Children’s Hospital in DC to see if we can capture more information to help determine what types of medications/treatments might work better for Maddie’s seizures.  We did the EEG in early November and it went as smoothly as it could go for a hospital stay… I did not sleep, but at least Maddie did!  Our room also had a view of the capital and Washington monument, an added bonus!

Here’s Maddie waiting at registration before we were able to go up to our room at the hospital… super calm!

And here she is… calmly sleeping in the room 🙂

After looking at the results of the EEG, the neurologist said that Maddie’s left side of the brain’s baseline activity was abnormal “excitability.”  Since the left side of the brain controls the right side of the body, that explains the tightness and less purposeful movements that we’d been seeing.  Although an unconventional way to treat seizures due to the risk of severe side effects, he suggested a short period of trying steroids to see if it could breakup/disrupt some of the abnormal excitability.  The plan is to be on steroids for 4 weeks with a 2 week wean.  We agreed to trying steroids and started in mid-November and have just started the 2 week wean.

Seizure Free – Praise The Lord!

After about a week on the steroids, her convulsing seizures completely disappeared!!  We have been waiting for this day for so many many months and we couldn’t believe it at first.  Our constant anxiety during the past year over when her next one will strike has finally been lifted.

However, with every step forward, it seems that Maddie’s condition throws us a few more curve balls.  We haven’t seen any medical side effects (e.g., high blood pressure, high glucose), but her mood, behavior and even physical state is noticeably different from before.  There was a two-week period where she was agitated most of the day and let us know through constant vocalizations and body movements (a torso/head/foot tic/twitch).  We had another EEG done last week while she had these body movements and vocalizations and confirmed they were not seizures (hooray!), but more likely discomfort due to the steroids. The EEG also showed that the abnormal excitability on the left side of the brain has resolved!

Constant Changes Are Continuing

Although this may seem like good news, I’m still wary because she seems ever changing while on the steroids… It has been extremely difficult to interact with and get a response from Maddie ever since starting the steroids.  Additionally, her muscle tone has completely changed with her right leg loosening up, but left side tensing up.  It’s definitely a little scary during this time period because we’re not sure what to expect the next day.  We are grateful that the convulsing seizures are gone, but not sure what to think of these new things that are showing up… are they just side effects or will they continue even after she stops the steroids?  Will her convulsing seizures come back after we are off the steroids or perhaps even sooner?  We have no idea what to expect…  and it seems we’ve simply traded one anxiety for another.  We can only take it a day at a time so we ask for your prayers for wisdom and strength to deal with whatever comes!

Extreme Nearsightedness on Top of CVI and Optical Atrophy

One other medical update is her vision, which hasn’t changed much with all the changes due to medication.  We saw the ophthalmologist in October and based on his assessment of her eyes while dilated, he believed she was very near-sighted.  However, it was so extreme that he wanted to test her vision again with us using a dilating ointment at home prior to coming in to the appointment.  We went again last week and unfortunately, he found the same results.

He described Maddie’s lack of functional vision due to (1) her significant optic nerve atrophy (2) abnormal brain processing of visual information (3) extreme nearsightedness.  He wrote Maddie a prescription for glasses, but said that since her vision problems include the other two factors that glasses may or may not do anything.  Also, only we can make that decision to see if the glasses make a difference and if not, it may not be worth continuing to wear them depending on if and how much the glasses bother her.  He gave us a few brands so we will try them out for a few weeks and see.  We will post pictures once we order and get them!

Despite the additional diagnoses, we’re still continuing with vision therapy.  We have seen her react visually in the past so we know something is there.  We just don’t know how she sees, but we will do whatever we can to help her gain any incremental benefit!  Recently, we cleaned up the mud room to use as a dark room for vision therapy.  Bill found an interesting design on Pinterest for an infinity mirror and built one for Maddie with some old LED light strips from her old playroom.  They change colors and Maddie seems to notice the lights during the transitions between colors.

Preschool Continuing Despite Medical Changes

In terms of preschool, it’s been a little all over the place!  While the teachers are getting to know Maddie, her mood and alertness continue to change as we work through various medications and now with the steroids, we never know what to expect for a lesson.  Below are some pictures of dot painting and other OT activities (pre-steroids) Maddie has been able to do!

Additionally, and also before starting steroids, Maddie’s teacher brought in some pumpkins and gourds for her to play with during their pumpkin themed week.  She did a great job grabbing and bringing them to her mouth!

Her teacher also brought some bells to put on her wrist and she looked pretty proud of herself ringing those bells!

While Maddie has been on the steroids, she hasn’t show much alertness except for our most recent PT session!  She was able to sit straight up (!!) and tried to grab at a toy when it made music.  It was such a relief to see some semblance of alertness, but unfortunately, we haven’t seen it occur again since then.

 

Photos Galore!!!

Now to get into some pictures… we’ve had two holidays since our last post:

Leading up to Halloween, we had some cute shirts to show off!

Maddie was a little wonder woman for Halloween!!  She had a pretty drowsy day, but perked up right before dinner so I could snap some good pictures 🙂

Maddie had already been on steroids for about a week when Thanksgiving came around and unfortunately, I remember that being her first day of agitation for most of the day.  We did manage to get a picture with Abby though!

And to end… some random pictures!

Maddie falling asleep in all sorts of positions as a result of the not-so-great side effects of high dosages of anti-seizure medications, but still cute nevertheless 🙂

Sleeping on the way home from brunch one day!!!

Resting on daddy’s shoulder…

Resting on daddy’s chest…

Twinning with Abby!  I will take FULL advantage while Abby still wants to and is excited about wearing matching clothes with Maddie!

Abby insisted on Maddie laying on her lap while she watched tv… until about 5 minutes in and she said Maddie was too heavy! Hahaha!  Maddie seemed to enjoy laying there though 🙂

Voting together!

SUPER big smiles… really miss these and hope we see them come back as we wean off of the steroids!

Despite what is said about thoughts and prayers, we firmly believe that your prayers are the most powerful intervention we can provide for Maddie.  This is uncharted territory for us and with how unique/complicated her TBI is, it may be uncharted territory for the medical community as well.  The brain is so complicated that even with 21st century care, the near future is very uncertain.  Only God knows and has full control.  Thank you for keeping Maddie and us continuously in your prayers.