Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Pharmacy Hour

Some nights I just want to chuck the risperdal, vitamin D, multivitamins, probiotics, fish oil, geodon, adderall, colace, NAC, tenex (gotta crush that one of course), and last week benadryl (but no more albuterol because I was told maybe THAT caused more aggression) (Fred was sick- he’s fine now, but every time he gets a cold he gets R.A.D.) ………..out the window and just tell the kids to go to bed. There are families out there who don’t have pharmacy hour between exercise time and bedtime– amazing.

Med update:

risperdal—–  WAS working well for Fred.  Until now.  He’s now at the highest dosage and he’s been suspended from school 5 days out of the past 6 weeks.  Emergency IEP meeting—- I asked for a 1:1 aide.  Denied because “he has more good days than bad”.  I asked that they stop suspending him because you can’t suspend impulse control into a kid with autism.  Denied.  I asked for another FBA– got THAT rolling.

Vitamin D—- Wilma is low.  Duh, we’re in Ohio.  Why is Fred not low?

Geodon— working fairly well— she’s having a good year.  Today I was told at her anal manometry that they’ve not usually done manometries on kids on such strong anti-psychotics.  yeah, ok.

Adderall— working super well—- she always does homework nicely, and always sits through class well, needing just a few breaks per day.

Tenex— just added it for the finger picking and forehead picking…… she gets one pimple and spreads it into a little colony by picking and picking.  Fun times.  Tried tenex before and it did nothing, but that was years ago.

Wilma failed her second anal manometry today.  This is after spinal MRI, Four xrays, countless cleanouts, countless cases of enemas, daily probiotics, daily fiber supplements, daily colace, and a partridge in a pear tree.

Basically we can clean out her colon (at least the bottom part right at the rectum with enemas) but we can’t KEEP it cleaned out and there is nothing we can do to clean out the top part of her intestines—– so we can get the encopresis under control if her megacolon is so out of control that she poops on command on a toilet once a day because it’s “poop time” (but has NO RAIR) (RAIR is the anal reflex that can be measured by manometry—– she failed her second manometry today— think of your knee getting hit by the reflex hammer and your leg automatically moves—– when anything is in her rectum, her anal reflex does nothing).
OR we can fix the megacolon by either cecostomy or perhaps going back to top down miralax type methods which will put her back in pullups and diahhrea 10-17 times a day. As a 9 year old, going back to pullups might be medically a good idea, but psychologically TERRIBLE. The manometry doc likes the idea of fixing the megacolon. The psychologist likes the idea of leaving the megacolon as is and keeping her with no RAIR and never knowing a poop is coming. (fine as long as she’s so regular that she NEVER poops other than poop time and NEVER gets sick with diahhrea—– every time she gets diahhrea she’s back in pullups and all bets are off—- we want her to go into adulthood using pullups every time she poops off schedule?)  The GI doc might be able to talked into cecostomy. I’ll keep you posted.
googling cecostomy and it doesn’t seem terrible but requires an hour on the toilet every night while the saline runs through. Wilma will enjoy all that ipad time— lol.

Chickpea Avacado Mash

autism meme

Just because it’s funny.

Time to put these in one place—- hilarious kids of mine.

 

#‎youmightbeanautismparentif‬ your 9 year old uses pick up lines on the cashier at the pharmacy. And she’s not even good looking. “Did you eat hot peppers? Because YOU SMOKIN’!”

#‎Youmightbeanautismparentif‬ your 7 year old SON is singing “my milkshake brings all the boys to the yard”  (this happened two years ago but needs to be categorized here)

#‎youmightbeanautismparentif‬ notations about what the Dow Jones industrial average is doing are written on your porch in sidewalk chalk by your 6 year old and you’re not phased. Oh…. and the house number of his girlfriend who lives a few streets away.  (this one from 3 years ago— entertained yet?)

#‎youmightbeanautismparentif‬ you tell your 6 year old to try to poop on the toilet (because YOU’RE trained to watch for the dance) and he responds with: “three eights equals point 375.” converting fractions to decimals? NO problem. Taking care of toileting needs? we’re getting there.

#‎YouMightBeAnAutismParentIf‬ at your first time at playground world, your kid is the one memorizing the prices of the play structures and avoiding the actual playing as much as possible. no slides, no rock climbing wall….. I DID get him into a couple swings and hammocks– but one look at the trampoline and he started freaking out.

#‎YouMightBeAnAutismParentIf‬ your kid can tell you that 6! = 720 (who taught him factorials???) but HAS to fall asleep with a particular stuffed animal in his mouth after at least an hour of jumping on the bed.

#‎YouMightBeAnAutismParentIf‬ your daughter prefers an MRI to a trip to Chuck E Cheese.

#‎YouMightBeAnAutismParentIf‬ you catch one twin picking the other’s nose.

#‎YouMightBeAnAutismParentIf‬ you think hard about what day it is as you’re laying out your kid’s day of the week undies—- you DON’T want to get it wrong.

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