So...to update you. When last we left our hero, she had a seizure at school and I took her to the ER and stuff. And since then I've learned...nothing.
I scheduled an EEG. This was done...jesus...a month ago maybe? Probably. I've heard nothing. I scheduled an MRI. That's Friday. Not looking forward to sedated Lily. It's hard to watch. But that's Friday. Then all the doctor visits...geneticists, neurologists, pediatricians, oh my!
But they're so far out that I'm probably going to call someone and ask them to tell me what, if anything, they found prior to the appointments (I think I'm in August for the geneticist).
School is out and Emma got her first job. It's fucking adorable if we're being honest. It's a huge pain in the ass getting her there, but my folks have been helping, and friends. So far so good. She's been making it to work on time whether it's me sending her or not. She hasn't gotten paid yet. I'll be curious what her reaction is. Honestly I think she'll just be excited. She's a very laid back kid. If it had been me, I'd have multiplied hours by rate and been crestfallen when I saw the damage income tax does...but Emma? She probably doesn't have any idea how many hours she's worked. Or how much to expect. She'll just be like..."money!" and run off to the mall to spend it immediately.
Lily is still sleeping like shit. I'm in phase two of the "fix lily's sleep" plan. I talked to her doc, and he sent me a great list. In fact...in fact, let me grab that list and post it for you folks who have kids who struggle with sleep. He has some great bullet points and pros/cons of different fixes. Some of you even posted some of the stuff he's got marked on the list as possible things to try. From his email:
The options for supporting sleep in children have greatly lessened over the last few years:
- Atarax / hydoxyzine-basic science indicates risk of arrhythmia if used nightly.
- Benadryl / diphenhydramine-risk of dementia in elderly…risk of neurocognitive dysfunction in children.
- Clonidine and Tenex: only last 4 hours, causing awakening. She did poorly on Tenex in past.
- Risperidone-may be tried in the next week, must consider side effects of atypical antipsychotic agents.
- Remeron-not recommended for young adolescents
- Trazadone-may be tried in the next week at 25 mg orally q evening, but many side effects….some overlapping atypical antipsychotic agents.Plan:
- 5-HTP supports serotonin increase, and a 25 mg capsule opened into food ½ hour before bed may be helpful. Kirkman, Thorne, Pure Encapsulations, Metagenics are good companies for this product. Occasional paradoxical nighttime awakening occurs….but worth a try and otherwise benign.
- Assure that all nutrients but Magnesium are given in the am or afternoon, and none after 6 pm, as many are activating. Try moving Magnesium 180 mg / ½ tsp to ½ hour before bedtime, as it is often calming.
- Turn off any nightlight in the room, if tolerated.
- Deep pressure massage of back for 10 minutes prior to bedtime can sometimes increase relaxation (no training necessary).
- Decrease any food that she craves greatly, as an IgG antibody to that food can come off the brain in the middle of the night, causing night awakening. This often happen with dairy, wheat, and soy products.
- Emerging clinical experience supports the use of a form of essential oil, lavender, a few drops rubbed into the feet, as helpful.
- Stop Melatonin SR (which usually works 8 hours, not 4 hours, for my patients). When she awakens in the middle of the night before 4 amMelatonin 1 mg orally can be given.
- If no improvement after a week of the above, we will discuss the Risperidone and Trazodone alternatives.
This is one doctor's opinion, and please don't take my list and run with it, because...results may vary...but if you're struggling with your own sleep issues, or your child is...these would be some great talking points to bring up with YOUR doc.
So where I'm at is...I stopped the sustained release melatonin. I started giving her 1.5 mg (half a 3 mg tablet) when she wakes up in the middle of the night. I started giving her 5-HTP (though they only sell 100 mg capsules, so it's pretty dicey about exactly how much she's getting. other people sell 50 mg, but are like twice as much as the kirkman capsules). I started giving her the Mg supplements at night. I started turning off her nightlight when I first get her to sleep.
Annnnnnnd...I don't really know that I've seen any improvement. Last night she got up at 2 a.m. By the time I staggered back to bed it was 3:30. I KNOW I didn't live through anything close to 1 1/2 hours of struggle, so I must have dozed off at some point, but it's hard getting that mid morning wakeup interruption and then dragging ass out of bed at 5:30.
This is still a work in progress.
Lily's aide is working out well so far. SO much less stress worrying about parents and in-laws driving 40 minutes to watch her every day so I can complete my work day. There's still the issue of Emma's work schedule, which Lily's aide doesn't support, but so far that has been workable.
I've been cooking more. Shrubs, pies, ceviche, bbq jackfruit for fucksake!, and I enjoy it. My niche is typically...what can I make ahead and get leftovers of, and I'll probably post a recipe or two in the near future. Next blog I'll wax poetic about shrubs. Not the kind Sean Spicer hides behind...the fruit/vegetable syrup that can be used in cocktails or sodas. They're awesome.
|Grilled pineapple and jalapeno shrub margarita|
That's it for now. More later. I won't promise I'll write more here...because I always seem to go in fits and starts, but I feel like writing more, so it's certainly more likely.