The past 5 days have been interesting.
Ok, that is a total lie.
The past 5 days have been awful.
Faith has never been much for sleeping. It’s as if the little switch that we all have that flips over in our brains and allows sleep, is missing for her. She just stays awake. For about 3 years now we have been using a combination of two medications, clonidine and trazadone, to help ease her into a restful and restorative sleep. We came to use those two particular medications after several years of trying natural, herbal, sensory, diet and behavioral modifications.
For the dose that Faith needs, we have her medications compounded. While that allows for ease in dispensing, it is a pain in the tush. The meds are only stable for 30 days, our insurance will only allow refills ever 25 days and shipping time for the compounds is 2-3 days.
We walk a fine line of “Crap! Only one dose left and the UPS guy isn’t here yet!”
We had our yearly appointment with Faith’s Developmental Pediatrician on Thursday. While discussing this issue we brought up having a back up medication on hand for situations like this. Since Faith is now almost 90 pounds and the medication would be used only very rarely for sleep, we thought of trying Ambien.
Conveniently, Thursday night we were on the line of running out of her compounded meds and her new ones would not arrive until Friday. Perfect night to give the Ambien a try!
Since I take Ambien, I know it works fast. We waited until almost her normal bedtime of 8pm, and then gave her 2.5mg. Then we waited, hopeful.
9pm – nothing
10pm – she was beginning to act hyper, making many vocalization and stimming
11pm – she was full on stimming, vocal ticking, trying to pick her fingernails off.
12pm – she was combative. Trying to hit Jimmy and I, pulling my hair, trying to hit her head on the floor, yelling at something she was seeing. We had to take turns attempting to hold her to keep her from hurting herself.
1am – combativeness started to lesson, but vocal ticks and stimming cam back, spent a lot of time shaking her head back and forth and laughing at the colors
2am – still wide awake, but no longer talking to things only she could see. Asked for her iPad.
3am – toppled over.
OMG! Every muscle in my body hurt from the force of trying to hold her safe from hurting herself. But at least it was over, right? Right?
7am Friday she popped up and began the vocal stimming again. Not in the frantic way of the previous night, but in a manic way. She was wired. She was unable to focus on anything, was talking but jumping subjects so fast she was hard to follow. This continued all day long. Thank goodness her compounded meds were being delivered that evening.
At 5pm the UPS guy delivered her medication.
Ummm, we have a problem.
- Old medication is on the top, new is on the bottom.
Did I mention her meds are compounded on the east coast? Did I mention it was Friday? Did I mention the pharmacy and my doctors office are closed on the weekends?
The new med was totally different. The compound that we have received for the past three years was dark purple, with a strong grape scent. It was the consistency of thick syrup. It was labeled 0.1mg/ml.
The med that arrived on Friday was totally clear, very faintly grape-ish smelling. It was the consistency of water. It was labeled 1mg/ml.
No note explaining the change. No one answered the phone at either the pharmacy or doctors office. She was still wired. She was still going a mile a minute. Until I talked with someone who knew what was going on, I couldn’t give her the clonidine. She was up until 2am Friday night. She woke once at 3 until 4am. She was up for the day bright and early at 7am Saturday. Then followed another full day of hyper, disjointed stimming and vocalizing.
This has to end sometime….right? Right?
Saturday she fell asleep once again at 2am. Up again at 5 for about 20 minutes, then asleep again until 7. Sunday was again full of hyper bouncing off the walls. Jimmy and I were on our last nerve. No sleep does that to a person after several days.
Anyway, long story short…
We finally talked with the pharmacy on Monday….after 5 days of hyper, wired, no sleeping Faith.
She had her correct dose of meds on Monday night. She fell asleep by 8pm and slept with only 2 wake ups until 10:30am on Tuesday! Her poor little body was plum worn out.
As are we….
Thank goodness for express shipping – or did you get it locally?
Once we talked to the pharmacy and confirmed what the meds actual mg/ml we were able to give her the new one that was delivered on Friday. Turns out they changed to a stabler base and moved to dye free flavoring. A note would have been nice….