off-label use of prescriptives

I've joined a new group on FB for parents and care-providers for children w/ autism.  One of the current threads I've been following and commenting on concerns a person who's child was prescribed a drug that is approved for children w/ autism, but the child is under the guideline age/weight, and the purpose of the script is off-label (fyi- that means the use of the drug for that purpose has not been officially studied, nor is it approved for that use by the FDA)

my big beef is that I get really tee-d off by drug companies using desperate parents who PAY THE DRUG COMPANY to basically be experimental subjects.  Then these same drug companies turn around and say their pre-release research is soooo expensive that they HAVE to have a monopoly on the drug for 7 years and force people to pay up the wahzoo during those 7 years.  and the clincher?  those 7 years are also used for research where you, the consumer, are paying the drug company to be a research subject.

What's happening during those 7 years?  they are starting the Long term results of extended use of the drug.  this is WHY we get drug recalls, and law suits against drug companies because of unforseen drug effects in the general population. 

It is the stupidest thing.  unless I am dying, I will NEVER take a drug that does not have a generic version. 

and now for my vaccine gripe- this is why my kids will NOT EVER get flu shots, H2N2 shots, or the stupid new HPV vaccine shots.  MAYBE when they are older, I may let them get a meningitis shot, but I'm still deciding on that one.  it's the same reason.  these companies RACE to get FDA approval, but they all have little if ANY (H2N2 specifically) research done on them. and Flu shots are hit or miss.  they literally guess which strain will be most virulent and make it for that, but there is really no knowing which strain of flu will be most pervasive in any flu season... I really believe unless you have other complications or are at a high risk of infection/respiratory problems, you should ignore the hype.  Healthy individuals are very likely able to fight most viral infections well. 

I get so mad at how backward this all is.

not luvin the stones....

Yesterday I was flat on my recliner with a heating pad to my lower back all day, except when I threw up d/t excessive pain.  yeah, that was tasty.  Bub stayed up all night, despite the nightlight and Ipad.  Momma took the Ipad away around 2 or 3, followed by much screaming and kicking of the wall.  FYI, yesterday was exactly a month from when the 1st episode hit.

today I had a "revenge of the stone" that lasted about 2 hours.  I pulled out my nursing book to reacquaint myself to the nursing interventions of kidney stones...pediatrics doesn't see too much of them, oddly enough....*sarcasms*

basically, I need to:

• capture some stones, which I have thusly been unsuccessful at
• drink 3+L fluid daily (hard to achieve when I am at work)
• start a food journal to look for triggers
• Food:
• take 1-2 grams Vitamin C daily
• prolly should eat less meat
• Prolly should cut calcium, but I barely ingest ANY calcium, around 6 oz soy milk daily, and some cheese every couple of days, rarely eat broccoli, never eat Kale or Chard or bitter crap like that....
• prolly should avoid chocolate (!!!!!!)  *boohoohooo*
• prolly should avoid coffee 
• might need to avoid whole grains  (
• I need to make an effort to pee every 3-4 hours (again hard to do at work)

(side story:  there are days (nights) while I am at work where everything is so crazy-busy I don't make it to the bathroom at all (that means 12-14 hours).  I am not the only nurse this happens to. PLEASE be kind to your nurse, we need an opportunity to pee too.)

Check out this lovely fact about kidney stones:

"The pain associated with ureteral spasm is excruciating and may cause the client to go into shock from stimulation of nearby sympathetic nerves"

Medical-Surgical Nursing 5th edition, Ignatavicius & Workman p. 1697

well, Bob's yer uncle.  one more thing to worry about..

Today during the few hours of wakefulness before and after the 2nd stone passed, zbug was on me like glue.  would not leave my side for anything, even Daddy offering her oreos.  I feel so guilty.  I'm at work 3-4 nights a week, w/ the days spent sleeping, then I get this and am cloistered in my room from pain, and that's another 2 days she doesn't see me.  even Bub is missing me, and being clingy while I'm around.  poor Joe looks like wall hit him, and the house like a tornado hit.  my MIL thinks I need to see a urologist, but until I get some stones, there really isn't anything to do except what I listed above.

things I'm pretty sure trigger a stone:  coffee & meat.

apparently I am getting the message that I need to become a semi-vegetarian....and a tea drinker.  How's that for irony....

Joe isn't going to be happy about a reduction of meat consumption in our home.  :(
neither will Bub be pleased since the only vegetables he will consistently eat are frozen peas and frozen corn while they are still frozen, and a raw carrot if he gets to peel it.

So I'm pretty depressed by all this.   but on a happy thought (ok I'm stretching it here):  I get stressed and make a human version of a pearl?!?!  lol!

Sundays can really suck...

The worst day in our house is typically Sat or Sunday.  Esp if Joe or I or both of us are sickly on either of those two days.  See...This is how it is btwn all of us....  I worked hard during the week and want to chill out and recoup from my job...Joe worked hard during the week and wants to chill out from the kids.  Bub had a hard week at school being in a disciplined scheduled and wants to not listen to anyone at any time to chill out from the week, Zber is super excited to have everybody home at the same time so She won't sleep during nap-time and insists on waking up at 3am to ensure all the playtime with us all she can cram in to a brief 48 hr period.

I had a mandatory vaccine in my rt deltoid on Friday for my new job.  Seriously...my arm is STILL killing me and I had what felt like a 3-day hangover all Friday and Saturday.  Joe had digestive issues all last nite and today...so he wanted (and did) to hide out in bed out of misery.  Bub wanted to poo on the floor a lot today...at least 3 times just today.  He really hates it when I scrub his fingernails...but like I tell him..."If you are going to touch it, I'm going to scrub it...I see you eat...you forget to use your fork sometimes!!!!"   Zber found a piece either Joe or I missed.  I threw up in my mouth a little...which is odd since I deal with a lot of poo at work too.  Maybe it was because she's my baby...I don't know...either way, puke in the mouth is just not a happy kind of thing.

But back to the vaccine thing...if one little vaccine can eff me up, I who am....(let's be kind...) ...rubinesque...imagine how it can eff up a little baby...and they want to do up to 9 different ones at once?  not to my babies...and not in Texas.  YEA for my philosophical right to refuse!!!  I'm an adult, and it made me have one of the worst head-aches of my life...and you're telling me it won't damage a baby's neurologic tissues?  I'll give the shots, but I sure won't let my babies have them on any one else's time frame but MINE!


grrrr......

Doctor visit x2 kiddos

Random Bub elaboration

We did it. We took both kiddos to the doctor at the same time yesterday.

It was and wasn't a nightmare...if you know what I mean...

Highlights:
- Bub stood on the scale all by himself w/o freaking out.  (95 percentile)
- Bub allowed himself to be measured for height
- Zber is nearly 25 lbs and is at 45 percentile for her age (no more underweight concerns!!!!)
- Zber had no issues with her exam
- Doctor gave me NO problems when I asked for a referral to ECI for Zber
- Doctor gave me no "vaccines are important" speech since we decided to skip vaccines this visit

Nightmare moments:
- Bub's ears getting checked (ie- pinning him down amidst loud screaming)
- Bub attempting a great escape from the exam room
- Bub throwing himself off the exam table
- Explaining Bub's special diet to the new nurse
- The nurse doing the initial exam of the kids telling me she wanted to get a job at my facility.....
- Almost forgetting to get a Doctor's note for Bub's school
- Ensuring that they removed ALL traces of medicaid for Bub's coverage...since we don't qualify for it anymore...

So, after we had to get the kids home and fed b4 we could take Bub back to school, he missed his lunch during the appointment.  Thankfully that went well, I tried to stay up until 6pm but passed out in front of the PC watching season 2 of "South Park"  Which is pretty good considering I had been awake for 26 hours by then.  At some random point Joe woke me up for a return call from the "Mystery submission" and I have a meeting about it on Tuesday.

Then this morning I forgot I had a work function and didn't remember until 2 hours after it started.  However, since I am an RN, not a LVN, I am already certified/authorized to do the procedure this training was on, I think it will be ok...but I would have liked to have a refresher on it, so I'm still kicking myself in the butt about forgetting....but to be fair, we were woken up at 5:30 by Bub pounding on the door which scared Zber who then started crying her head off....and Joe was feeling poorly and I was/am still wiped out from my Thursday-friday day, so my head was not where it usually needs to be.

I've been very lazy today.  I did do the dishes, and fed the kids at appropriate times, and gave the kids their baths...so I guess I did what I needed to do.

We got a new kitten yesterday.  We ended up having to give Gunk away to another home because he did not like Zber...he kept spitting at her and acting like he was going to bite her face off.  He's [Gunk] very happy now and has a new cat friend.  I'm glad for that.  This new kitten has 6 toes on each paw, is black and white and is SO mellow around the kids.  Bub is very happy and is learning to pet her softly, Zber hasn't figured out that tails are NOT for grabbing and pulling yet.  we put up the baby-gate in front of the laundry room so the kitten can come and go as she pleases.  Bub wants to play with the kitty litter.  I try not to gag when I find Bub in there doing just that.  If he wasn't before, Bub is now an expert at hand-washing techniques, Nurse style....lol

displacement

I am guilty of displacement today.  I didn't want to think about the funeral, so I focused on getting Bub to Therapy on time (we didn't, but the 9:30 people no showed and Bub got moved in...prolly cuz we prepay 2 weeks in advance....) and getting Zbear to her 12 month appointment at 15 months....yeah...lets just say we've been having some scheduling issues lately....

Now I find that Zbear is 31.4 inches and only 21.5 lbs.  She's underweight for her age and her length.  I'm very depressed about this.  Her NP wants me to start adding nut butters to her diet.  I'm scared to try what with all my food allergies and sensitivities and Bub's milk allergy.  So I'm taking a deep breath and going to get some almond butter on monday....after I get some sleep.  Also, Joe and I are debating whether to put her BACK on formula or maybe try adding malted to her soymilk.  I'm thinking we're going to go back to formula...I feel terrible.  She eats really well.  I give her lots of variety. WHO would think MY kids would have concerns w/ being UNDERWEIGHT?!?!?  Bub is a stick, and it looks like Z will be too.  Why do they get my recessive genes?  *sigh*

Z has now completed her polio series.  Next series will be Hib I think...Still deciding.

Then after getting the zb'er home and in for a nap, got ready and went to the funeral.  It was very sad.  that's all I'm going to say about it.

So afterward, I displaced my upset-ness by making dinner, then going to a choir practice that I just realized I got the performance dates wrong and will only be able to be in the production by the biggest finagling I can acheive, and then went to the library.  Found a new book on Autism and newer/researched therapies.  I think I may review it ....SEE, I'm doing it again.

then instead of dealing w/ my sadness, I did the dishes, convinced Bub that he had to clean his butt-butt after pooping, (washed my hands....), and cleaned my refrigerator because I forgot/didn't get around to cooking a chicken, and it went REALLY bad, and since I'm going to be doing more displacement here in a min by cooking several meals to feed my little fambly during my next rotation, I didn't want to put yummy food into a fridge that smelt horrible.  You know the movie Labyrinth?  the "bog of eternal stench"?  yeah, that was my fridge.   409 is my friend.  :p  Plus I'm getting laundry done.

But really, I know what I'm doing, and I know what it is.  But knowing what you are doing and why you are doing it doesn't really help you deal with it in the end...it just seems to make the anxiety about it bigger.

I' haven't had that many people that really meant a lot to me die, the few that have were 100s of miles and years distanced, Not someone I spent time with every week.  But I'm not trying to come out as a caloused person that wasn't close to her dead relatives...it's just that I was really young when they died, or that I was never close to them to begin with...the one exception to that was my Tetka, but I hadn't seen her in years, and then when I tired to call to keep in touch with her,  her English vanished, and my ukrainian is pretty much non-existant,  then her hearing went, and when she died, it was like she was already a memory.  (does that sound awful?)
It's kind of scaring me how hard I'm taking this.  And I did realize he was important to me before all this happened, I know I griped about special requests, but I always did them because beneath the bluster and the drunk sailor impressions I knew it meant a lot to him.

I'm getting all morose again...better displace and make some enchiladas (w/o cheese) and meatballs and brisket.

Nubs.

....

I may multiple post today.  I'm killing time waiting to leave for Z's rescheduled x2 Dr. appt.  I forgot where we are on my vaccine schedule.  I think we have one more polio to do, then I think we'll start HIB.  maybe.  I'm sure I'll get the required vaccine lecture....yayee for the CDC.

Today is also the funeral, part of me wants to skip it, but I know I'll just hate myself if I do that.  then after that I have to get serious about cleaning my kitchen, cooking at least 3 or 4 dinners for Joe and the kids during my next rotation, and make sure I have clean scrubs.  clean scrubs are -kinda- important....

at least I can wear my jeans tomorrow.  yayee for casual Fridays.  would rather have, "stay home & we'll pay you for no reason Friday".  but that's not going to happen.

Nubs

autism and doctor visits

Yeah, you would think I would be able to prep my Bub for doctor visits pretty well considering I'm a nurse and all, right?  WRONG!!!!

As some of you know, Bub was looking like he had fifth's disease again, and had missed 3 days of school, so we go to the dr.'s .

before we go, we practice

take temp

open up and say "Ahhh"

look at ears.

listen to heart

He cooperates w/ momma, so we get ready to go.  Bub is very excited to take a ride, but when we get to the Doctor's office, Bub knows EXACTLY where he is....building of DOOM!

This is quite similar to Bub's expression once he realizes we are at the Dr office...

he doesn't want to get out of the car.  he doesn't want to go inside.  in the waiting room, he keeps trying to make a great escape out the door.  then we're called in and put in a exam room.  Bub is making lots of vocal stims and spanking himself.  I try to convince him to rub his bottom instead of hitting it.  he compromises by flopping on the floor and scooting his butt back and forth.  the horrible part of me thinks he looks like a dog w/ worms doing the butt-scrape thing....maybe the self-spanking stim is better for now?  sigh.
To stop this stim, I grab 3 tongue depressors, 1 for each of his hands and one for momma.  we practice opening up and saying "ahh"  Bub thinks this is fun.

then the lady comes in to take his V/S.  Bub is automatically wary.  He won't let her take the temporal temp, so I do it.  he grudgingly lets us put the probe on his finger to get his pulse and SpO2...after 3 attempts.  then off to the scales.  Bub is terrified of scales.  I have no idea why unless he is still associating it w/ getting weighed and fingersticked for hemoglobin at WIC, but we stopped doing that before he was 3....so I have no other idea why this is scary to him.  finally I say, let me hold him, and get on the scale then put him down so you can get an accurate weight that way.  Joy joy, I get to see I gained 7 lbs.  yayee me.

so now Bub is freaked, and we go back to the exam room by ourselves.  We start counting to 10, because that is calming to Bub, then we start naming/signing animals...another good time-passing calmer.  then the NP comes in, and Bub has instant wariness.  She smiles at him, he smiles back and makes a break for the door.  Bub's no fool, he know what comes next.

The NP and I talk for a few min about Bub's presentation and my guess of what's wrong.  She then shows Bub her stethyscope, Bub likes that, she lets him listen to his heart, then he lets her listen to his heart/lungs.  then she gets the otoscope.  No dice.  Bub starts screaming.  I try to hold him still, she gets one ear...I've got Bub pinned to the wall and the floor and she still can't get to the other ear.

So she goes to get reinforcements.  I have Bub's trunk and arms, another RN has Bub's legs, the V/S chick has his head.  Not only are we able to get a sight on the other ear, someone manages to strep-swab his throat as he is screaming in protest to the restraints we have all become.  I'm actually really impressed they GOT the swab.

Everybody lets go of Bub at this point and my poor boy collapses face-first into my shoulders, sobbing like we just beat him up.  It always breaks my heart that these visits have to be so traumatizing for him.  He then starts the self-spanking again.  I take this opportunity to point out the behavior and ask for meds to help or to get a referral to someone who is qualified to prescribe and monitor behavioral meds.  Bub is calming down and sitting on my lap, eying the NP w/ great suspicion.  I get the referral, the strep-swab result is negative. so we get to leave the exam room.  I tell Bub to sign thank you and good-bye, which he is MORE than happy to do since he knows his time in the torture chamber is now over.

We go to the business desk to pay, Bub is practically running to get away and because he remembers that there be lollipops on the business desk.  Bub doesn't even ask for candy, he starts reaching for the jar of lollies, so I stop him and make him sign "candy please".  He signs "cookie please".   really?  Dude, you know the difference...who do you think you are trying to fool?   After a quick correction, he gets it right and picks out a red dum-dum.  the lady at the desk offers him two stickers, his choice between iron man and Gweneth Paltrow is the sticker of Gweneth....maybe he does get the "hot chick" thing after all....hrm.....

Bub is so happy to be leaving the Doctor office of Doom that he willingly holds the door for some lady when Momma asks him to be a gentleman.  it was pretty cute. 

then he fell asleep in the car on the way home, so exhausting was the appointment.  poor kiddo.  I wish this was so much easier for him, but it's not.

Nubs