Month: April 2015

EEG Update and Some Thanks

On April 20th, Paige had another 24 hour Video EEG.  I’ve been documenting her recent seizure activity on the blog and this particular EEG was to hopefully “catch” a seizure in action to determine an appropriate medicinal course to keep them at bay.

**Quick version** If you haven’t been keeping up, or are just tuning in, we’re pretty sure Paige is having tonic seizures induced by startles and being woken up.

As I predicted, our girl didn’t have one “episode” during our whole hospital stay!  Believe me, we tried to induce one.  A nurse did the light test where they flash blinking lights in her face, I woke abruptly while she was napping, and I tried to scare her a bit.  (Her neurologist got a pretty good laugh watching me try to induce a seizure when they looked over the footage…)  Nothing worked.  Not. One. Thing!  So, even though we didn’t really get what we were looking for, I ultimately took it as a good thing that she wasn’t having them and figured I’d get a call from the neurologist saying, “No change!”.

Wrong.

Well, maybe.

Paige’s neurologist called me this morning and told me that while they did not see any seizure activity her brain waves looked “scary”.  I’ve explained this before, but Paige’s brain activity will never look normal because her brain structure is not normal.  They can get a baseline for “Paige’s Normal” and still detect dangerous or problematic activity going on.

So, what does this mean?  We don’t really know.  Paige is acting as happy as ever and even had a burst of development!  She has been rolling over unassisted, appropriately says “yeah” (in the cutest voice, might I add), shakes her head no (mostly when she doesn’t like a food or get a diaper change), and has been reaching and playing more and more.  All the while, her brain is looking “scary” and we don’t know why.

What I do know is that she has been having some sort of seizure activity.  In what capacity?  We’re not sure but we’ve had to give her rescue med, Klonopin, a number of times and, while it’s worked, the fact hat we needed to use it means… something.  We just don’t know what.  We also know that seizure activity tends to change around age two and she’ll be that age in June.  We know that we’ll have to deal with seizures in some way, shape, or form for the rest of her life.  A leading Lissencephaly doctor at Boston Children’s told us that she has a 100% chance of having a seizure disorder, so there’s that.

Our options:

1.  Another round of ACTH injections.  Paige has had a successful round of ACTH during her bout with Infantile Spasms when she was 6 months old.  This is a heavy duty steroid that I had to inject in her thighs twice a day for a month-long course.  She gained weight, was completely miserable, and didn’t smile for weeks.  However, after she weaned, we had ourselves a happy baby with a “near normal” EEG.  It worked and it worked for a long time (yes, a year is a long time in the Liss world).

2.  Another oral steroid.  Month-long course.  Probably the same as above aside from the needle pricks and pain.

Let me add, Paige was a CHAMPION during her ACTH treatment!

3.  Try another epilepsy drug on top of the one she takes twice a day to see if that helps.  Most kids that I know with Liss are on more than one.  Sometimes a handful or more.

4.  Wait and see.  Since her behavior and development is great, this sounds like a no brainer but there is a chance that the “scary” brain waves can mean trouble’s a-brewin’ and she can have a really BAD seizure and complications that follow.

I don’t even want to think about the complications that can follow.

I’m currently waiting for another neurologist in Pittsburgh to give their opinion as well as the previous doctor’s I mentioned in Boston.  From there, Andrew and I will make the most educated decision for Paige and hope that it works.  We’ve always told ourselves that we’re going for quality of life over quantity but it doesn’t make these decisions suck any less.  We shall see.

Andrew and I are doing okay after the information we were given today.  We’re happy that she’s so happy and there’s still a lot of facts and options that we need to acquire for her doctors.  All we can do is consider this a plot twist in our lives and do what is best for our girl.  We’ll definitely keep you updated!

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On another note, we want to give a HUGE thanks from the bottom of our hearts to those who have supported our t-shirt fundraiser.  We met and exceeded our goal in less than 24 hours..  24 HOURS!!  

The amount of support, well wishes, likes, shares, and donations brought me to tears and we’re so thankful!  So, thank YOU!  We can’t wait to rock our PAIGE PATROL t-shirts!

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Paige Patrol T-shirt Fundraiser

Hello, all!  We are raising funds to help with out-of-pocket therapies and interventions for Paige.  Here is a link if you want to check it out.  Thank you so much for your support!

https://www.bonfirefunds.com/paige-patrol

xoxo,

Stephanie

You’ll Never Walk Alone

In a eulogy I recently delivered at my Grandfather’s funeral, I encouraged everyone in the audience to take time to reflect on, and be thankful for, all of the good things we have in our lives. Since I have previously been told (in a nice way, of course) that my writings on this blog have been a little on the “downer” side of things, I decided it was time to take my own advice! While my prior posts were totally honest and reflective of how I felt at the time (and still feel, to a degree), there are so many positives that our daughter’s health situation has brought to our family, both directly and indirectly. I wanted to take the time to highlight one particular way that Paige’s health has brought my family even closer together than we already were, and how our wonderful daughter has shown us what truly matters in life.

As Steph and I have both discussed extensively, we were completely blindsided upon receiving Paige’s diagnosis in December 2013. One of the first people we were referred to as a result of her condition was a vision therapist. When we initially met with this therapist about a week or so after her diagnosis, I was about as low as low could be. I had spent the whole week prior fighting just to drag myself out of bed in the morning. I had barely eaten anything, couldn’t sleep, and felt like I was living life in a daze. I didn’t understand how this absolutely perfect, beautiful child we had could have possibly received such a dire, life threatening diagnosis.

And then this therapist showed up at our house, and provided us hope when we had absolutely none. He was very empathetic and took the time to understand our situation and our feelings associated with it. But he also made it very clear that our daughter wasn’t going to be defined by a medical diagnosis, and that he would do everything in his power to get Paige as far along as her little body and mind would let her. He got me to look forward and think about all of the things I could do to help my daughter, as opposed to looking backwards and feeling sorry for myself. I will be forever grateful to this therapist and all of the assistance he’s provided Paige with, in addition to being there for my family and I during a very difficult time in our lives.

Anyway, this therapist recommended a few activities to help stimulate Paige’s vision, as her brain does not properly process the sights her eyes take in. One of the things he recommended was watching certain kinds of sports on television in HD, as the bright colors on things like hockey and soccer can be particularly attractive to any young child with a vision issue. If you knew me at all during the first 30 years of my life, you’d know that I thought the hockey thing was great, and the soccer thing, well not so much. But this was about Paige, and not me in the least, and I was willing to try anything within the realm of possible to help my daughter.

One of the first sporting events I put on the TV for her happened to be a Liverpool FC soccer game. If you don’t know anything about soccer (and I didn’t until about 6 months ago) Liverpool is one of the most popular and successful soccer clubs in England, all of Europe, and really, the entire world. And for whatever reason, Paige was immediately glued to the TV and fixated on it for the entire game. We’ll never know for sure, but I assume she was attracted to the bright red home jerseys Liverpool wears contrasting against the green soccer field they play on.

Interestingly enough, the “anthem” for Liverpool FC is a song called “You’ll Never Walk Alone,” which was originally featured in the 1945 Rodgers and Hammerstein musical “Carousel.” The song has been covered by many notable artists and bands, and part of it is even featured in a Pink Floyd recording titled “Fearless.” It officially became the anthem for Liverpool FC in the early 1960’s upon a commercially successful covered release of the song, and the phrase “You’ll Never Walk Alone” is even featured within Liverpool’s logo. One of the greatest spectacles you will ever see in all of sports is 45,000 Liverpool fans singing this song, completely in unison, during warm-ups for every home game. The words go like this:

When you walk

Through a storm

Hold your head

Up high

And don’t be afraid of the dark

At the end of the storm

Is a golden sky

And the sweet silver song of the lark

Walk on through the wind

Walk on through the rain

Though your dreams be tossed and blown

Walk on, walk on

With hope in your heart

And you’ll never walk alone

You’ll never, walk alone

This song, and the way it unites the Liverpool followers, immediately struck a chord with me. I thought about the words and how they could be applied to my own life. It made me realize that while things didn’t necessarily work out the way Steph and I had envisioned them, that our family has so much love, so much hope, and we weren’t going to let this curveball we were thrown define us. We’ve realized that Paige’s condition may bring us some “downs” in life, but that Paige herself is full of absolutely nothing but ups – joy, love, happiness – the only things that really matter in life.

So fast forward a year, and one of my favorite activities to do with Paige is watch Liverpool soccer games on Saturday and Sunday mornings. Paige may never be able to speak any words, but I can feel the bond between us strengthening every time we watch these games together, and for those 2 hours or so, nothing else matters. Lissencephaly, seizures, and all of the other bad stuff associated with her condition cease to exist, and we just have quality father/daughter time in our own unique way. I can see the love for me that she has in her eyes, and I’m confident she knows how much she is loved by Stephanie, Will, myself, and the rest of our family.

You’ll never walk alone, Paige. You’ll never walk alone.

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