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Tuesday, June 20, 2017

I Lied

I told you guys I was going to wax rhapsodic about shrubs, but as I was pulling pictures for the last post, I realized all the shit we haven't talked about that's more important than shrubs (sorry shrubs, but it's true).  Anyway, I lied and I'm sorry, and I'd tell you I'll never lie again, but that would also be a lie, and you see how this kind of stuff can really snowball on you?

Anyway...We had the walk!  It was just after...or maybe before the last post about EEG's and Seizures and stuff.  Not the most recent last post, but the last post before the last post.  The second to last post. I guess that's what they call it.

Anway, we walked, and if you really really feel guilty about not walking (participation was at record lows for the team despite the tshirt kicking significant ass this year) then you can basically catch the whole (almost literally) thing because I Facebook-Lived like...28 minutes of it.  I'm super entertaining.  At least...at least my mom said I am.

Probably you can't link to this if you don't have facebook.  I don't know.  Maybe you can.  Facebook Live: The Walk

Anyway, we had a good day.  Raised some money (though not as much as usual...slackers...) and had a nice walk.
Standing on my tiptoes to appear taller
It's Kenny!  From Kennywood.  I...I think
Finish Line!  Like...like it says in the picture.
Post "race"
Sure...NOW you sleep.

Summer Break

Hi it's me.  Jim.  Jim Walter.  The...guy with the ...hair?  I know, I know, it's been a while.  I've been writing, but the writing I've been doing has been for Healthline and not my blog.

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:
  1. Atarax / hydoxyzine-basic science indicates risk of arrhythmia if used nightly.
  2. Benadryl / diphenhydramine-risk of dementia in elderly…risk of neurocognitive dysfunction in children.
  3. Clonidine and Tenex: only last 4 hours, causing awakening. She did poorly on Tenex in past.
  4. Risperidone-may be tried in the next week, must consider side effects of atypical antipsychotic agents.
  5. Remeron-not recommended for young adolescents
  6. Trazadone-may be tried in the next week at 25 mg orally q evening, but many side effects….some overlapping atypical antipsychotic agents.
Plan:
  1. 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.
  2. 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.
  3. Turn off any nightlight in the room, if tolerated.
  4. Deep pressure massage of back for 10 minutes prior to bedtime can sometimes increase relaxation (no training necessary).
  5. 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.
  6. Emerging clinical experience supports the use of a form of essential oil, lavender, a few drops rubbed into the feet, as helpful.
  7. 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.
  8. 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.

Thursday, April 27, 2017

Rough Patch

Lots to unpack here.  Where to start...

Lily, always a good sleeper, if somewhat more of an early bird than daddy might like, is not a good sleeper anymore.

She goes through these little...streaks or trends or phases, so in the past, when she hasn't been sleeping I sort of chalk it up to a phase, or maybe she's coming down with something.  But at this point...it's been since daylight savings time last October ...I think I'm ready to say, "she's not a good sleeper".
It could be worse of course.  Autism/ADHD and no sleep seem to go hand in hand a lot, and I've certainly had a nice long run of "in bed at 8 and up at 6".  Now we're at "in bed at 9 and up at 3".  That's painful for a guy who can't get to sleep much earlier than 11 on the best of days and usually gets to bed around midnight only to wake up at 5:30 to start my work day.

So to go to bed at 11...or midnight...then wake up at three for the day is...draining.  I wrote a little about what it does to me when I'm sleep deprived >>here<<, but in a nutshell...the patience I need..NEED to deal with some of Lily's challenging behaviors is not in abundance.  Or Emma, honestly.  I snapped at her yesterday for something that I ordinarily would have just laughed about.

So that's the first thing.  I need to find a "solution" to this problem.  I use a monitor in Lily's room.  That way I can tell when she wakes up and get her on the potty. 

I could turn off the monitor.  Except she has been getting out of bed and coming down the hall, or even the stairs lately.  And she is not the best at stairs.  Especially if she's wearing slippery socks on the hard wood steps.

I could install a gate at the top of the stairs.  That might be okay.  I could turn off the monitor without worrying about Lily taking a spill down the stairs.

I could see if there's a sleep aid Lily could take to keep her asleep.  Getting her to sleep is no big deal...KEEPING her asleep is what I need.  Would dosing her with melatonin when she wakes up help?  Maybe.  Not sure.  But melatonin has been pretty ineffective with her in the past.

I could do nothing and hope this...6 month phase passes.

I don't know.
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Help at home.  I got approval from my insurance company for a home health aide for Lily.  She started a week ago.  I was approved at the end of January, but it's taken this long to find a resource.  Now that she's started, it relieves a lot of the burden from grandparents having to drive 40 minutes one way to watch her until I can get home from work.  This is an amazing benefit, and I'm slowly getting comfortable with it.  Right now it still seems very new and I'm still stressed out about it, but hopefully I'll mellow out with time.

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Lily is growing up.  I won't go into the personals, but she's growing up and I have a plan, and that's basically all I guess anyone needs to know.  Not that anyone NEEDS to know it, but if you were like...what the hell is Jim going to do when Lily goes through puberty...Jim has a plan.

If you don't have a plan, feel free to reach out to me.  I like my plan.  People that need to know stuff know stuff.  And they know what to do.  And I know what to do.  And if you don't know what to do...you should figure that shit out sooner rather than later.

Was any/all of that cryptic enough?  Anyway, if you have a little girl like Lily, and you're considering your options, I'd be happy to discuss it with you "off blog".

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It bothers me that I'm never sure if my little dashed lines are all the same length.

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Lily had a couple seizures at school the day before yesterday.  We've long suspected seizure-like activity with Lily, but up until Tuesday nobody had ever really witnessed them who had a lot of experience.  The school called me and they sent her to Children's hospital ER in a "princess carriage".  I drove to meet her there.

We learned nothing.  Lily had previously done a sleep-deprived EEG that was inconclusive, and we elected not to do a 24 hour EEG followed by an ambulatory EEG because, to be honest, the first one was so fucking traumatizing that I didn't want to put her through it.  That was...years ago.  >>HERE<<.

In fact...5 and a half years ago.  So I'm doing it again.  I got a script for an MRI and one for an EEG and I'll be doing it this time without Leslie's support, but Lily is in a LOT better place for this kind of thing now.  She'll still have to be sedated for the MRI, which isn't my favorite, but there's is absolutely no way she'll sit still to have her brain scanned for a half hour.

So the "good" thing is someone saw it, and we checked it out and she seemed fine.  And the other "good thing" is that now I can use the scripts to get a better look so that IF something is there...I can get her help for it.
this Lil patient is being so patient

I was at the ER from 1:00-7:00 on Tuesday to get those two prescriptions and that medical buy-in that she was "fine".  And Lily was somewhat stir-crazy, but she was good all things considered (having not really eaten since breakfast, they wouldn't let her eat until she had bloodwork done I think that finished up around 5.  So...that was a bit painful constantly telling her "just a little bit longer".

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Recap:  Lily isn't sleeping much, and is becoming a woman.  In addition, she seems to have had a couple seizures at school.  I need help, but got some for after school if I can just figure out a way to get more sleep.  Doc says there could be a link between her seizure and her coming of age, and that could be scary, but I'm following up.

There!
Unpacked.  For now.