Although Madison hasn’t been diagnosed with anything specific regarding sleep issues, this has been one of our biggest struggles with her post meningitis. While most parents find themselves googling for ways to get their child to sleep, I suffer from the opposite problem with Maddie; she sleeps far too often (during the day).. somehow at night she always seems to decide to wake up, just like all kiddos lol.
When we were transferred to CSH for therapy last year after our stay in the PICU, Madison often slept through her therapy sessions. It was a really difficult month. John had gone back to work and came to the hospital every night, while I lived each day holding a mostly sleeping baby. Now yes, two month olds do sleep quite a bit still, but Madison slept through everything and anything. Her therapists could be ringing bells, using cold rags, bouncing her up and down, and we would get NO response. It was a huge struggle and when we got home the excessive sleep continued.
Anyone who knows someone with a brain injury will tell you that the brain needs a lot of time to heal, and that sleep is much needed. And while I believe that is true and want to give Madison the time she needs, these first few years are also crucial to her development. By sleeping through the day it leaves us very limited hours to focus on therapy and getting her brain to make new connections. It also leaves limited time for her to practice the skills she does begin to pick up on. Honestly, aside from her epilepsy, this has been our biggest concern as parents.
John and I have brought up her sleeping issues to literally every specialist, doctor, and therapist she sees and unfortunately no one has ever been able to give us a solid answer as to why she sleeps so often. There are just so many factors at play that could be affecting her sleep:
1. Brain Injury: meningitis takes a huge toll on the body and it’s possible she really just needs the time to heal, even 1 year later
2. Hypothalamus Disfunction: her hypothalamus was damaged and this controls the sleep-wake cycle in people
3. Seizures: her infantile spasms cause a pattern of chaos in her brain, so it’s possible that when she is awake her poor little body just can’t handle all of the madness going on in her brain and chooses to sleep in order to shut it out
4. Seizure Medications: pretty much all of the seizure meds Madison is on come with a drowsiness side effect and we have for sure seen these meds play a role in her sleepiness, especially when starting a new one or increasing a dose
Perhaps for poor Madison it is a combination of all of the above. I was hoping things would improve over time, and they definitely have, but she still isn’t consistent with a sleep-wake schedule, which in turn still makes it quite hard to really get her to participate in the amount of therapeutic services she receives. I would love for her to attend even more services, but when I can’t commit to a time of day that she’ll be awake to partake in speech therapy for example, it can make things quite difficult to schedule.
She has definitely been more awake and active in the most recent few months and I continue to pray that as her brain heals and we find better control of her seizures, she’ll continue to last longer during the day or take shorter naps. When she has a good day, we see so much potential in her and it leaves us with the hope that as she wakes for longer periods of time and more consistently she’ll be able to practice her skills and get stronger in each one.
I know I’ll probably kick myself for saying this, but I always tell John that I don’t care if our next kid ever sleeps, because I’ll be so overjoyed that he or she wants to explore this world in a way that Madison isn’t able to enjoy yet. (Now ask me that again when I haven’t slept in 24 hours and I might have a different answer lol) But for all of you parents that are exhausted and wishing your child took more naps or slept longer, while I totally understand your exhaustion, be thankful that your baby is able to wake up and learn and discover the world around him or her.
We all need sleep, but watching your child grow and learn is probably the greatest joy of being a parent- so let it happen! We as parents will catch up on sleep eventually. (And I’m not advocating to let your kid stay up all night by any means! Sleep is essential for any child’s health and well being, but when they skip that nap because they’re busy playing and enjoying the day- don’t stress about it!) I can’t wait for the day Madison skips a nap, but until then I will say, she sure is beautiful to watch sleep! Have a great weekend!
October 5, 2018
Thanks for sharing your story! Wishing you guys all the best!
Not sure if you’re open to ideas, but as far as therapy goes, is there any way to schedule the sessions and just have the therapists train you how to implement the activities/exercises when she’s awake? The. You can maybe record yourself doing them with her and then next session play it back for the therapists and have them help you modify activities. Just an idea so you don’t feel like you’re missing out on treatments.
October 6, 2018
Awesome idea!! I definitely try to pick up on what they’re doing but great suggestion to record it and play back! Especially when it comes to speech! Thank you!
October 6, 2018
Even sound asleep she is beautiful.
October 6, 2018
That she is!