Hi I'm the mom who posted about a bunch of times this month about seizures and sleep issues and tbh I was definitely kind of spiraling. And everyone in the comments was helpful and supportive and funny and kind and I just want to give everyone a giant thank you.
I am going to try to give as much context as possible here, as I am genuinely looking for any advice but I am exhausted and frustrated and I don't want the entire post to seem like a rant.
Older kid, 7, ADHD/anxiety/possible ODD, has absolutely never slept well, not since she was a toddler. We had an extreme family trauma when she was 3 and since then I have worked with doctors, therapists, and sleep counselors. For a little over two years now, she can fall asleep ok, but has regular night wakings and can be very destructive - tearing apart toys and books, flooding the bathroom, ripping photos off the walls, etc. The destructive behavior has improved, but it's not gone.
Five year old, TBI/Epilepsy/Cognitive Delays, had no sleep issues until the past few months. Always napped, slept through the night, or if she woke would go back to sleep reliably. But now she is up with sister almost EVERY SINGLE NIGHT. This has been going on for seven months.
Five year old absolutely can not function without sleep. Being over tired triggers seizures. She falls asleep in school. She's had huge regressions with her behavior therapist and toileting and has gotten violent a few times.
I am absolutely beside myself. We are all exhausted. They used to share a room, and separating them has not worked because whoever wakes up at night now will tear the house apart to find the other. They both fall asleep at bedtime very reliably, but once or twice a night one or both of them wake up and it becomes a madhouse.
I have tried incentives, sticker charts, white noise machines, magnesium and melatonin, pushing back bed time, moving up bedtime, giving medication at different times, natural consequences (if you don't sleep you'll just be tired and cranky, we can't go to certain events if you haven't gotten good sleep,) quiet activity options, sleeping with them, not responding.... And I am now in night six in a row of waking up at 2am and no one has gone back to sleep.
I don't know what to do.
My kid has epilepsy related to abusive head trauma. She had a seizure at school. She has a migraine and a stomach ache and even though I love a day to sit on the couch snuggling with my kid this is so fucking annoying because I don't want her to be in pain and I don't want her to be so groggy and sad and disoriented and miss her sessions with her therapist and special instruction today and I definitely don't want to miss these hours from my paycheck. Just venting I guess.
Small vent, just had to pick my child up from PreK. Great morning, great drop off, then an hour in to work I get the call. Focal seizure, now she has a horrible migraine. I just hate this for my little kid. Thank God the staff at school are responsive and thank God my workplace is accommodating (I've worked at a place that wasn't, and that was 100 times worse), but watching my baby be sad and confused and in pain is just heartbreaking.
I am so lucky that some days she can just be a happy kid, going to a school program and making friends and making progress. Days like today just put us all in a funk. She's missing her session with her BHT and special instruction, she's disoriented and miserable and doesn't feel good, I'm missing hours on my paycheck, the routine is thrown off and my anxiety is high.
I can accommodate and predict so many things for her, behaviors and cognitive delays and motor skills, but the seizures are still so hard.
Part asking for advice, part venting while I hide in my room. My kid, 5, was the victim of abusive head trauma at 2 years old. We have been working with behavior therapists for the last two and a half years. Lots of progress, lots of ups and downs. We're in a down right now.
She's getting bigger. She's still a little kid but she's fast and she's strong and some days it is really hard to physically get myself between her and whatever dangerous situation is coming up. She will kick, and hit, and scratch. She will throw anything she can, pull curtains off the windows, knock over furniture. She will run away, into stores or parking lots or the street. A few moments ago while she was throwing any toy available, she slammed a sharp object into the back of my neck.
These episodes can be triggered by almost anything. She has very little frustration tolerance, and bad separation anxiety from me. She has focal seizures. 80% of the time she is happy, silly, curious, wonderful little kid. But then something goes off course and she escalates immediately, full meltdown, screaming and destroying everything. As much as I can anticipate her triggers and prime a situation for her, we still have these episodes every day.
After the outbursts, she almost "comes to" and breaks down in to these heartbreaking tears, she's scared and lost and embarrassed. She hates these episodes more than anyone else. She knows she breaks things and hurts people, and she doesn't want to.
I am in a holding pattern right now waiting for appointments with Neuropsychologists and a pediatric psychiatrist. Her neurologist is wonderful and we are able to keep her epilepsy fairly controlled, the blended case manager and BHT see her multiple times a week and they are really connected. But still here I am, with bruises on my arms and a cut on my neck listening to my partner soothe a scared, confused little girl who doesn't understand why she can't always control her body.
I don't know if there's some magic strategy I'm missing, something that can help deescalate or "snap her out of it" quicker, or something else I can do to navigate around transitions or just the everyday reality of having to tell a child No that will prevent the meltdown. I'm open to absolutely any advice. I will do anything in the world to help her, and help all of us.
As an additional note, because I will die on this soapbox, shaken baby syndrome is real. It is devastating. It kills most victims, and the survivors face lifelong consequences. And it doesn't just happen to small infants, toddlers and young children are also at risk. One moment of frustration and bad judgement from a caretaker changed my entire family's future. I am forever grateful that my daughter survived, but the challenges she is facing are so, so hard.