Summary of Kaylee's Recent Health Issues

To sum up all of my posts about Kaylee's recent health issues... In the end of October 2013, Kaylee started acting odd. All of her existing behavioral issues were magnified by 100. Basically, she was having giant tantrums and mood swings. She wasn't listening and doing dangerous things, like running into the street. Her doctor thought this was normal for an emotionally sensitive 4 and a half year old who might possibly have some minor sensory processing issues. We decided (her doctor, Steven, and I) that it was just the trauma of her Gigi (my grandma) going into hospice.

Later in the week, her behavior worsened to the point where I knew something was very wrong. She was hurting herself and others, had memory loss, and very severe mood swings. I had to call my brother to come help me restrain her because I didn't feel like I could keep her safe and watch Brynna too. She also developed symptoms of trichotillomania, and pulled out so much of her hair that we ended up having to shave it all off. (I later shaved mine off too, to make her feel better about losing her hair because she was pretty upset about it.)

Long story short, she was hospitalized for a week. She had to be sedated for a lot of it and kept in a padded crib because she was a danger to herself. She had a million and one tests and they finally decided it was a viral infection that had spread to her brain and caused severe encephalitis (brain swelling). This caused the mood changes, memory loss, and severe behavioral changes. They told us she would probably make a full recovery within the next 3 months.

It's still rough right now. Sometimes it feels like her progress is two steps forward and one step back. She can't read, write, do math, etc. as well as she could before she got sick. She still has episodes where she will cry uncontrollably, be scared for no reason, get violent, laugh crazily, do dangerous things, etc. She doesn't sleep through the night and has a lot of night terrors. But it's not nearly as bad as it was and she is continuing to slowly improve.

Right now (November, 2013), we're just struggling to settle into a routine. Our new normal is going to multiple appointments a week (she now has a therapist, psychiatrist, neurologist, grief counselor, and a few more). She needs a lot of extra attention and supervision. We are all grieving for my grandma (Kaylee's Gigi) so that makes it even harder. But we're focusing on the progress Kaylee has made. When she was in the hospital, all we did was pray that she'd survive. Now she smiles, laughs, draws, does puzzles, plays with her sister, runs around outside, loves school, and does great at swim class! There may be rough parts, but she's come so far, and we're so thankful for that. :)

Update 1/14/2014: Kaylee is doing SO much better. We recently went on a gluten-free trial so we think that may be contributing to it. It could also just be time passing and her brain healing. But the point is, she is doing great, and we hope it keeps up!!

Update 1/25/2016: In the past 2 years, we've had good days and not so good days. Kaylee still has pretty severe mood swings. We've learned to avoid a lot of her triggers. She's made a lot of progress; we all have. A huge lesson we've had to learn is be happy when things are going well, but not be disappointed when we're having a rough time. We were really attached to the idea that any progress she made would be permanent, but now that now we are more used to the fact that while she does make progress, she will still have her ups and downs.

We have tried medications but are taking a break from that right now. She had a pretty bad reaction to the last one we tried and ended up in the ER. So right now, the plan is to just keep doing what we're doing. We are going to keep figuring out ways to help her make progress, and but also ways to improve how we deal with things regardless of the progress she makes.

There are rough times. I don't want to downplay that. But all in all, we have gotten pretty good at staying positive. We're really optimistic about the future. Kaylee truly is an amazing little kid. :)

3 comments :

Melissa Fletcher said...

She is so courageous! So glad things are looking up for her and for all of you! Bless you all xo

Melissa Fletcher said...

She is so courageous! So glad things are looking up for her and for all of you! Bless you all xo

Sarah Frederick said...

I am so glad to read that she is recovering well. My mom was found to have severe encephalitis when she was 9 months old. That would have been about 42 years ago... they didn't have nearly the technology we do now. I'm amazed at the medical advances we have and that there are so many experts to care for our little ones. I can't imagine how scary that was for you, but I am very impressed by your courage and example for your daughter. Really really awesome. I will be praying that things continue to improve! :)