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.
Showing posts with label medications. Show all posts
Showing posts with label medications. Show all posts
Thursday, September 27, 2012
Wednesday, July 04, 2012
happy July 4th, and ode to my kidneys
 |
| GROSS GROSS GROSS!!!!!! |
This is the most awful thing I ever ingested. ever. and I of course am experiencing common and non-common side-effects. yayee.
One thing that sucks about being a nurse? Recognizing symptoms and the consequences of those symptoms quickly in myself- and jumping to worst case scenarios that must be ruled out QUICKLY!!
Thankfully, my CT scan showed no tumors anywhere in my pelvic regions, specifically my renal system. I am the proud momma of kidney stones. woohoo.
After talking to my parents, I discovered I have relatives on my paternal side that deal with this too. So glad I get to share the love. feh.
So I am still dealing w/ side-effects from my oral contrast...and they are NOT pretty side-effects. I am hoping they will end soon since I am past 24 hrs from ingestion.
Meanwhile, Zbug is very clingy of momma, and Bub has a case of the giggles, as reported by Grandma.
SO-- Happy 4th of July! Drink lots of water and be good to your kidneys!
(ps- happy anniversary to my parents! love you!)
Tuesday, November 15, 2011
I'm sure the girl named "Ryan" wished she could bomb me over the phone....
Currently on hold with an online pharmacy that I found that has affordable meds for Bub while we wait for our new insurance to begin in January. I placed the order on 11/4/11. On 11/10/11 I was told I should have it yesterday. I don't. I know to expect mixups and delays the 1st time using a new service...but come on. Today is the last day I have his current meds. I really don't want him to miss a dose.
The website says its being processed...but what does that mean? that it will be shipped in another week? It is madness. All because Bub's med is not a highly used drug, and it's indications for use are limited and must be monitored w/ blood tests and such. puff.
(Later)
What is really frustrating me right now is that this chick (she said her name was "Ryan", and I responded w/ "really?" and she got pissed at me...lol) said the payment that I posted on 11/4 for this order didn't go thru until yesterday (11/14), however my bank statement says it cleared on 11/8??? something is not adding up here. I called back to get an explanation from the manager/supervisor since "Ryan" was prolly lying to me w/ mymocking surprise of her "name", or to be charitable she was reading me a line of crappola that her upity-up told her to spew out at disgruntled part-time housewives like me (having been in middle management at telemarketing companies, I know this to be true since I used to be the manager coaching my employees to read crappola to customers when I knew it was a pile of crappola...which is why I am no longer in telemarketing...but I digress...) so anyhow, I call back, spend 20+ min on permahold, get thru, ask to talk to a supervisor, am told I will be transfered to said supervisor and then am put on a nameless voicemail...prolly where they put the disgruntled part-time housewives that are barely refraining from swearing and usage of other creative conversational devices. or maybe this guy had creative listening and thought I said "put me to a nameless voicemail box please" maybe...I am told I have a MN accent....dontcha know.... puff.
(much later)
I tried to call back again...was again on permahold. got tired of it and had to give up because I really needed to make dinner for my poor family who had been putting up w/ my dramatic sighs over this all day, plus had to get ready to take Bub to his horseback riding therapy (the only one we can afford right now), and be ready to drive immediately to my PRN job once I dropped him off at home. so it was busy. Now that I am home from my 1/2 shift, I logged on to the pharmacy site to see if there has been any change to the status. SURPRISE. nothing changed. sent an offline "instant message" requesting enlightenment and a conversation w/ a supervisor to discuss "Ryan"s snippy attitude with me earlier, because as the day continued, I became more convinced it wasn't me, and I had been VERY patient with her and did not swear once at her...although I did do the record-player technique until I am sure she wished she could bomb me over the phone.
And so, sometime on Wednesday I will try to find a conclusion to this abysmal state of affairs. meanwhile, I filled yet another week of the risperidone ODT for Bub for the "low low" price of $70.00. Yayee for me. Yayee for expensive not popularly used drugs that jack up the price. puff.
Nubs to all anyway
The website says its being processed...but what does that mean? that it will be shipped in another week? It is madness. All because Bub's med is not a highly used drug, and it's indications for use are limited and must be monitored w/ blood tests and such. puff.
(Later)
What is really frustrating me right now is that this chick (she said her name was "Ryan", and I responded w/ "really?" and she got pissed at me...lol) said the payment that I posted on 11/4 for this order didn't go thru until yesterday (11/14), however my bank statement says it cleared on 11/8??? something is not adding up here. I called back to get an explanation from the manager/supervisor since "Ryan" was prolly lying to me w/ my
(much later)
I tried to call back again...was again on permahold. got tired of it and had to give up because I really needed to make dinner for my poor family who had been putting up w/ my dramatic sighs over this all day, plus had to get ready to take Bub to his horseback riding therapy (the only one we can afford right now), and be ready to drive immediately to my PRN job once I dropped him off at home. so it was busy. Now that I am home from my 1/2 shift, I logged on to the pharmacy site to see if there has been any change to the status. SURPRISE. nothing changed. sent an offline "instant message" requesting enlightenment and a conversation w/ a supervisor to discuss "Ryan"s snippy attitude with me earlier, because as the day continued, I became more convinced it wasn't me, and I had been VERY patient with her and did not swear once at her...although I did do the record-player technique until I am sure she wished she could bomb me over the phone.
And so, sometime on Wednesday I will try to find a conclusion to this abysmal state of affairs. meanwhile, I filled yet another week of the risperidone ODT for Bub for the "low low" price of $70.00. Yayee for me. Yayee for expensive not popularly used drugs that jack up the price. puff.
Nubs to all anyway
Sunday, October 23, 2011
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......
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......
Friday, September 23, 2011
Meltdown: where the hell did that come from Bub?
Bub had -THE- biggest meltdown I have seen in a VERY long time this afternoon.
I stayed up very late this morning after work, completing a document I had been working on for over a week. I passed out on the couch watching Joe play "Angry Birds"....I don't get the allure..
When Bub got home from school around 3pm, I was still passed out on the couch...he attacked me w/ a big ol' smooch on the kisser, so he was in a very good mood. I still didn't get awake until about 430 tho. I went outside to grab the mail and heard such screaming coming from inside.
*Sometimes I think our neighbors worry about the noises coming from our house....*
I walk in to find Joe pinning Bub to the couch. Bub's face is beet red and he's screaming his lungs out. Joe says he had his back turned for a min, and found Bub attempting to hit Zber. Obviously Bub and Joe are only intensifying eachother's anger, so I grab bub and convince him to hang out in his room with me. I locked us both in. Bub didn't like being locked in his room despite my being in there with him. He tried to hit me, tried to hit and kick the walls and doors, tried to throw himself on the ground, tried to head-butt me. I just kept stopping him and tried to distract him with his favorite toys, and getting him to copy momma doing deep breathing while signing "calm down"
when he stopped screaming so loud and gave up on hurting me or himself, we went to the bathroom to get some APAP meltaways and brushed teeth and did the ACT rinse (tactile stimuli really helps, but it has to be "his" idea these days to make it successful). so now he's smiling and we make funny faces at eachother in the mirror.
When we leave the bathroom, I announce to Bub that we are going to the kitchen to make his all time favorite dinner of chicken nuggets so he wouldn't remember his angriness and attempt to recapture the mood once he and Z came face to face again. Momma's rouse was successful, I had bub help me make the nuggets. He's really good at putting them in the microwave and setting the microwave, but he's always impatient and opens it up before they are done ad tries to eat the "raw" nuggets.
Thankfully, there were no more angry episodes before bedtime, and Bub helped me put new sheets on his bed after he tore his off and flung them on the floor during his meltdown. He seemed to welcome the idea of bed, and he likes how Momma will play into his ritualistic-ness by setting up his blanket layers exactly right including putting the ani-ooh and camera in his bedding.
I think Zber must have tripped on Bub or did something that physically "hurt" him, because he kept trying to bang a specific body part on me and the walls...he usually only does that when he is actually hurting, not when he is just mad. I have no idea why it escalated to such a high intensity today tho. But it is Friday, and I've been at work Tues -Thursday nite. I wonder if this is happening at school. I'm not getting any notes about it if it is tho.
Joe is worried his resperidone needs to be upped. I have to remind him that Bub's med doesn't stop the anger and aggressiveness...it just tends to tone it down a bit so behavioral modifications have a chance to sink in. my poor bub. Autism sure can throw a loop on you very unexpectedly.
*FYI- Zber was not hurt by Bub...we keep a VERY close eye on things like this and protect both our children to the highest extent*
I stayed up very late this morning after work, completing a document I had been working on for over a week. I passed out on the couch watching Joe play "Angry Birds"....I don't get the allure..
When Bub got home from school around 3pm, I was still passed out on the couch...he attacked me w/ a big ol' smooch on the kisser, so he was in a very good mood. I still didn't get awake until about 430 tho. I went outside to grab the mail and heard such screaming coming from inside.
*Sometimes I think our neighbors worry about the noises coming from our house....*
I walk in to find Joe pinning Bub to the couch. Bub's face is beet red and he's screaming his lungs out. Joe says he had his back turned for a min, and found Bub attempting to hit Zber. Obviously Bub and Joe are only intensifying eachother's anger, so I grab bub and convince him to hang out in his room with me. I locked us both in. Bub didn't like being locked in his room despite my being in there with him. He tried to hit me, tried to hit and kick the walls and doors, tried to throw himself on the ground, tried to head-butt me. I just kept stopping him and tried to distract him with his favorite toys, and getting him to copy momma doing deep breathing while signing "calm down"
when he stopped screaming so loud and gave up on hurting me or himself, we went to the bathroom to get some APAP meltaways and brushed teeth and did the ACT rinse (tactile stimuli really helps, but it has to be "his" idea these days to make it successful). so now he's smiling and we make funny faces at eachother in the mirror.
When we leave the bathroom, I announce to Bub that we are going to the kitchen to make his all time favorite dinner of chicken nuggets so he wouldn't remember his angriness and attempt to recapture the mood once he and Z came face to face again. Momma's rouse was successful, I had bub help me make the nuggets. He's really good at putting them in the microwave and setting the microwave, but he's always impatient and opens it up before they are done ad tries to eat the "raw" nuggets.
Thankfully, there were no more angry episodes before bedtime, and Bub helped me put new sheets on his bed after he tore his off and flung them on the floor during his meltdown. He seemed to welcome the idea of bed, and he likes how Momma will play into his ritualistic-ness by setting up his blanket layers exactly right including putting the ani-ooh and camera in his bedding.
I think Zber must have tripped on Bub or did something that physically "hurt" him, because he kept trying to bang a specific body part on me and the walls...he usually only does that when he is actually hurting, not when he is just mad. I have no idea why it escalated to such a high intensity today tho. But it is Friday, and I've been at work Tues -Thursday nite. I wonder if this is happening at school. I'm not getting any notes about it if it is tho.
Joe is worried his resperidone needs to be upped. I have to remind him that Bub's med doesn't stop the anger and aggressiveness...it just tends to tone it down a bit so behavioral modifications have a chance to sink in. my poor bub. Autism sure can throw a loop on you very unexpectedly.
*FYI- Zber was not hurt by Bub...we keep a VERY close eye on things like this and protect both our children to the highest extent*
Thursday, July 14, 2011
more of the world from Bub, and a monkey salad bowl
Bub has been doing really well on Risperidone. Tomorrow will be a week on it. next Thursday I need to call his Doctor and report on how he's doing. Peeing in the potty has improved...pooping...not so much yet. He has been VERBALIZING!!! Grandma caught him on tape saying "Big!" as he built a lego tower that was taller than he was. -I- heard him say "big" while he was building a plastic easter-egg tower yesterday...and he almost never verbalizes around me...lil stinker... lol
I met with his school nurse on Tuesday to update her on his new med and side effects to look for (most rare yet possible- neuroleptic malignant syndrome) she never heard of either the drug or the side effects. REALLY? not remember NMS? I remember VERY well Ms Wyszynski going over that in Med Surg III. telling us how to "snatch that patient from the grip of death" as NMS is pretty fatal if you don't identify and address it very quickly. Bub's Dr and I talked for a great while about how frequent that side effect had manifested in her years of practice (very VERY little). I told the school nurse that if he shows symptoms of NMS call 911. She said they don't like doing that w/o calling the parents first. !!!!???!!???! call me, I'll call 911 and meet him at the hospital! Seriously...if you had a kid go into a diabetic coma (likely in a school setting at some point), you would call the parents before you dialed 911? I have grave concerns about this nurse and her desire to protect her license....
ANYhow,
I was going thru the pictures on my camera and noticed some pictures I didn't take, and aren't in the style or nature of pictures Joe would take..(Joe takes pictures when I hand him the camera and say, "Just take a picture of me and the kids already!!!!!") And Bub has been understanding the camera, and loves to turn it on while making his "elaborations" to watch the progress on screen, like he's on TV or something. :) it's cute. But I think he actually took some pictures while he was viewing his progress. I need to buy him a cheap $20 digital camera soon, so he won't keep stealing my pricey one! lol
And a while back...I posted about Zbear pulling out the Monkey wood salad bowl my parents got us. I found the shot. Click HERE for that post.
Nubs to you all! Good night!
I met with his school nurse on Tuesday to update her on his new med and side effects to look for (most rare yet possible- neuroleptic malignant syndrome) she never heard of either the drug or the side effects. REALLY? not remember NMS? I remember VERY well Ms Wyszynski going over that in Med Surg III. telling us how to "snatch that patient from the grip of death" as NMS is pretty fatal if you don't identify and address it very quickly. Bub's Dr and I talked for a great while about how frequent that side effect had manifested in her years of practice (very VERY little). I told the school nurse that if he shows symptoms of NMS call 911. She said they don't like doing that w/o calling the parents first. !!!!???!!???! call me, I'll call 911 and meet him at the hospital! Seriously...if you had a kid go into a diabetic coma (likely in a school setting at some point), you would call the parents before you dialed 911? I have grave concerns about this nurse and her desire to protect her license....
ANYhow,
I was going thru the pictures on my camera and noticed some pictures I didn't take, and aren't in the style or nature of pictures Joe would take..(Joe takes pictures when I hand him the camera and say, "Just take a picture of me and the kids already!!!!!") And Bub has been understanding the camera, and loves to turn it on while making his "elaborations" to watch the progress on screen, like he's on TV or something. :) it's cute. But I think he actually took some pictures while he was viewing his progress. I need to buy him a cheap $20 digital camera soon, so he won't keep stealing my pricey one! lol
 |
| I took this picture of his geo-work by the driveway |
 |
| Self-portrait taken by Bub...how about them nostrils? hee! |
 |
| Rolly-balls! Bub LOVES his rolly-balls! Unfortunately, Zbear does too... |
 |
| More rolly-balls! |
And a while back...I posted about Zbear pulling out the Monkey wood salad bowl my parents got us. I found the shot. Click HERE for that post.
 | |||
| Monkey girl in monkey bowl! |
Saturday, July 02, 2011
meds for Bub continues
Like I said, we have a script for Risperidone for Bub, but we can't fill it yet (well, we could, but I can't I/D it) until after he gets his baseline labs drawn. I'm a little frustrated with this currently. After his appt on the 21st, I got super sicky and was not functional until that Friday after 5pm...so of course, Joe didn't call Bub's pediatrician (since that is the mommy/nurse job) *roll eyes*. So on Monday I called to ask whether we wanted to draw blood for Bub in the office while an unspecified number of us pinned him to the floor...or if they wanted to send us to a lab that has access to all sorts of wonderful restraining devices. The RN I talked to (who I went to school with) sd she'd have to ask the MD. ok, I figured that.
So it's Friday, again...and no one has called to let me know what the deal is. So I call, start the story over again, am told I have to bring the script in before anything can be done. ????
I already got the specialist's report in the mail...that means my reg Pediatrician did too. In MY copy of the report it was stated that Bub needed a liver profile and FBS baseline b4 starting Risperdol...what more do you need to call me back to get things going?!? I am seriously wanting to join in w/ Bub on the banging the head on the wall thing....maybe we can bang on each other's heads for a while.... SO I dropped off the script 1/2 hour before they close for the holiday weekend. which means I prolly won't get Bub's labs drawn until the week of the 11th. I'm a little flustrated about all this. well a lot frustrated. but I guess I will deal, what else can be done?
Me and Zbear played outside for a good while today before it got hot and before her nap (love that she still naps). She insisted on eating dirt...twice. apparently momma is not to be believed when momma sez dirt is nasty and ooky for the mouth. maybe zber is convinced it's free chocolate waiting for whoever grabs it first? well, that's what she acted like.
Nubs
So it's Friday, again...and no one has called to let me know what the deal is. So I call, start the story over again, am told I have to bring the script in before anything can be done. ????
I already got the specialist's report in the mail...that means my reg Pediatrician did too. In MY copy of the report it was stated that Bub needed a liver profile and FBS baseline b4 starting Risperdol...what more do you need to call me back to get things going?!? I am seriously wanting to join in w/ Bub on the banging the head on the wall thing....maybe we can bang on each other's heads for a while.... SO I dropped off the script 1/2 hour before they close for the holiday weekend. which means I prolly won't get Bub's labs drawn until the week of the 11th. I'm a little flustrated about all this. well a lot frustrated. but I guess I will deal, what else can be done?
Me and Zbear played outside for a good while today before it got hot and before her nap (love that she still naps). She insisted on eating dirt...twice. apparently momma is not to be believed when momma sez dirt is nasty and ooky for the mouth. maybe zber is convinced it's free chocolate waiting for whoever grabs it first? well, that's what she acted like.
Nubs
Thursday, June 23, 2011
sick on a day off :(
Don't you just hate that? I have the worst stuffy nose that zyrtec & benedryl can't touch, plus I'm all achey and tired, and a temp over 100F I just don't have energy for this. Joe is being a trooper tho, trying to let me rest and not get frustrated w/ me. I love him for that. Zber is not so patient.
We had some "excitement" yesterday. I came in from outside in the afternoon and forgot to lock the door. about 20 min later Bub tries the door, figures out it's open and made a great escape. I was on the couch behind the packnplay barrier we have set up to keep Zber out of the kitchen when Bub is doing elaborations in there, I'm hurdling this crib (barefoot), Joe who is behind the PC barrier is hurdling the trunk, Zber is hooting all excited. I get out the door, and Bub is halfway down the driveway heading for the street. That is the scary bit. Our road has a 20 mph limit, but because we live in kinda nowhere off a couple of main country roads, NO ONE obeys that speed limit. And Bub is heading for the road. I'm barefoot getting my soles tore up on the rocks halfway to Bub as he is almost at the street, I'm screaming "Stop! Sign Stop Bub!!!" (cuz he is more likely to do a thing if he signs it), meanwhile, Joe in his cowboyboots passes me and grabs Bub just as Bub reaches the street, turns around and starts laughing hysterically. Glad he sees something funny in this, cuz I just want to cry.
Needless to say, Bub was disciplined which lead to an hour of Bub protesting w/ loud screams and bangings of the wall with limbs and toys. after he calmed down, Joe took him to Lowe's to look around. Going to Lowe's is one of Bub's favorite trips.
As for his appt w/ his pediatric behavoralist, Bub now has a script for risperidol. we spent a good 20min talking about side-effects and necessary blood work for this med. Sometime today, I need to call his regular pediatrician and set up an appt to get a fasting blood test for Bub. I am NOT looking forward to that at all. Last time we had to draw blood on Bub, he was 3 and he was so freaked out and non-compliant we had to put him in a papoose restraint, and STILL have 2 more people help to keep him totally still. I have a feeling I will be referred to the local hospital's lab to ensure the draw goes smoothly. He will have to have blood tests every 6months once he starts this. yea me. But, if it helps him, I will do it.
Zber is now napping after breakfast and a "Ba-ba" (bottle), I will prolly join her soon, and try to fight off this virus. I need to beat it by Saturday. I am scheduled another 4day rotation. I REALLY hope I get a different section this time around.
Nubs.
We had some "excitement" yesterday. I came in from outside in the afternoon and forgot to lock the door. about 20 min later Bub tries the door, figures out it's open and made a great escape. I was on the couch behind the packnplay barrier we have set up to keep Zber out of the kitchen when Bub is doing elaborations in there, I'm hurdling this crib (barefoot), Joe who is behind the PC barrier is hurdling the trunk, Zber is hooting all excited. I get out the door, and Bub is halfway down the driveway heading for the street. That is the scary bit. Our road has a 20 mph limit, but because we live in kinda nowhere off a couple of main country roads, NO ONE obeys that speed limit. And Bub is heading for the road. I'm barefoot getting my soles tore up on the rocks halfway to Bub as he is almost at the street, I'm screaming "Stop! Sign Stop Bub!!!" (cuz he is more likely to do a thing if he signs it), meanwhile, Joe in his cowboyboots passes me and grabs Bub just as Bub reaches the street, turns around and starts laughing hysterically. Glad he sees something funny in this, cuz I just want to cry.
Needless to say, Bub was disciplined which lead to an hour of Bub protesting w/ loud screams and bangings of the wall with limbs and toys. after he calmed down, Joe took him to Lowe's to look around. Going to Lowe's is one of Bub's favorite trips.
As for his appt w/ his pediatric behavoralist, Bub now has a script for risperidol. we spent a good 20min talking about side-effects and necessary blood work for this med. Sometime today, I need to call his regular pediatrician and set up an appt to get a fasting blood test for Bub. I am NOT looking forward to that at all. Last time we had to draw blood on Bub, he was 3 and he was so freaked out and non-compliant we had to put him in a papoose restraint, and STILL have 2 more people help to keep him totally still. I have a feeling I will be referred to the local hospital's lab to ensure the draw goes smoothly. He will have to have blood tests every 6months once he starts this. yea me. But, if it helps him, I will do it.
Zber is now napping after breakfast and a "Ba-ba" (bottle), I will prolly join her soon, and try to fight off this virus. I need to beat it by Saturday. I am scheduled another 4day rotation. I REALLY hope I get a different section this time around.
Nubs.
Wednesday, June 22, 2011
Meds for Bub
Fabulous appt yesterday. Not so fabulous doing a forth 12h shift on 3h of sleep. My head is still hurting, so I'm going to hold off blogging about the appt other than the fact that I am holding in my hands a script for Bub to start meds.
V. happy, just waiting for the sleep-deprived headache & allergy-like symptoms to abate.
Nubs.
V. happy, just waiting for the sleep-deprived headache & allergy-like symptoms to abate.
Nubs.
Wednesday, June 01, 2011
stubborn bub
My poor poor kid. He's got an overdose of stubbornness from both me and Joe...We just spent the last hour convincing him to take his herbal supplement (that is nominally helping- for now). Then when he decided to take it, he tried to get more than he should. all or nothing...it's crazy-making.
He seems to be back on to environmental art again. here is his latest creation
To be honest tho, today was a really bad day. and I hear the doubters saying "All kids have bad days"
Yeah, all kids have bad days, but not like this. Not when it's a bad day w/ stims and self-abuses, and obsessions, and rituals. Sometimes when people tell me "it sounds like pretty typical behavior for a 6 y/o", I want to punch them in the face. I GREATLY edit what I tell people about the bad days, even the people who know Bub really well, because they either won't believe me and think I'm exaggerating, or they will give me the "f***, this chick is nuts...run away"- look. yes it is a specific look....I bet you have it on your face right now.
QUICK get a mirror and look so you know what I am talking about.
Convincing your child that he can't bring his pennies to the livingroom b/c they will be ingested by his little baby sister is hard enough when they understand you, add not sure if you are being understood in the mix, then add his irrational obsession to bring them into the livingroom even tho Momma is threatening to take away the said pennies, add to that Momma took them away to protect the baby.
Sometimes, the way he acts when I have to take away his latest ritual-obsession makes me think of an addict that can't get his next fix and is freaking out to find/get what will make the withdrawal pain away. great, to protect the baby, I'm making my poor boy go thru penny-DTs.
that actually kinda made me laugh in a defeated kind of way.
and what is really frustrating is that not even an hour before this started he was being SO good. he wanted to help me cook, so I let him "help" me cut the greenbeans and onions that I was cooking for lunch. and after a brief refusal of lunch (I gave him his favorites, not what the rest of us ate) and he did eat his hotdog, applesauce and noodlies, and spent a good 45 min with me writing the alphabet and numbers. He even copied a smiley face that I drew. He's NEVER drawn a face that doesn't look like a clown about to have a sucking contest with a vacuum cleaner before.
after we got both of the kiddos to bed, Joe and I just sat outside for awhile, shellshocked. I keep telling myself it will be better, it has been better, it HAS to get better. I'm having a hard time believing myself today.
He seems to be back on to environmental art again. here is his latest creation
To be honest tho, today was a really bad day. and I hear the doubters saying "All kids have bad days"
Yeah, all kids have bad days, but not like this. Not when it's a bad day w/ stims and self-abuses, and obsessions, and rituals. Sometimes when people tell me "it sounds like pretty typical behavior for a 6 y/o", I want to punch them in the face. I GREATLY edit what I tell people about the bad days, even the people who know Bub really well, because they either won't believe me and think I'm exaggerating, or they will give me the "f***, this chick is nuts...run away"- look. yes it is a specific look....I bet you have it on your face right now.
QUICK get a mirror and look so you know what I am talking about.
Convincing your child that he can't bring his pennies to the livingroom b/c they will be ingested by his little baby sister is hard enough when they understand you, add not sure if you are being understood in the mix, then add his irrational obsession to bring them into the livingroom even tho Momma is threatening to take away the said pennies, add to that Momma took them away to protect the baby.
Sometimes, the way he acts when I have to take away his latest ritual-obsession makes me think of an addict that can't get his next fix and is freaking out to find/get what will make the withdrawal pain away. great, to protect the baby, I'm making my poor boy go thru penny-DTs.
that actually kinda made me laugh in a defeated kind of way.
and what is really frustrating is that not even an hour before this started he was being SO good. he wanted to help me cook, so I let him "help" me cut the greenbeans and onions that I was cooking for lunch. and after a brief refusal of lunch (I gave him his favorites, not what the rest of us ate) and he did eat his hotdog, applesauce and noodlies, and spent a good 45 min with me writing the alphabet and numbers. He even copied a smiley face that I drew. He's NEVER drawn a face that doesn't look like a clown about to have a sucking contest with a vacuum cleaner before.
after we got both of the kiddos to bed, Joe and I just sat outside for awhile, shellshocked. I keep telling myself it will be better, it has been better, it HAS to get better. I'm having a hard time believing myself today.
Wednesday, May 18, 2011
you give me fever...
Was watching muppet shows lately, and saw Rita Moreno sing "Fever" w/ Animal. pretty funny, but not so funny here at home.
Zbear is still suffering a fever, so far the pattern is: happy cool baby in the morning, fine all afternoon...come 7pm, temp shoots up past 101. my poor sweet cheerribub. She actually just wanted to snuggle on my chest and rest (NOT sleep tho), she hasn't done that since she weaned herself at 10mo. (Momma's still a little bitter about her weaning herself so early...)
Momma sang her songs and then watched the arts channel after my voice started breaking...you know, cuz I sing so much nowadays...yeah. Then my Mom called and the phone ringing startled the bejankers out of her. So instead of being cute sad hot baby, she quickly turned into grumpy mad hot baby.
It was time for her next dose of APAP, made her a bottle of pedialyte and popped her back into her crib. I've heard no complaints so I am sure she is fast asleep. Have my A/C on to 74. I am FREEZING...but I will pay the slightly higher electricity bill and wear a sweater in May if it keeps my little Zber comfy.
Nubs
Zbear is still suffering a fever, so far the pattern is: happy cool baby in the morning, fine all afternoon...come 7pm, temp shoots up past 101. my poor sweet cheerribub. She actually just wanted to snuggle on my chest and rest (NOT sleep tho), she hasn't done that since she weaned herself at 10mo. (Momma's still a little bitter about her weaning herself so early...)
Momma sang her songs and then watched the arts channel after my voice started breaking...you know, cuz I sing so much nowadays...yeah. Then my Mom called and the phone ringing startled the bejankers out of her. So instead of being cute sad hot baby, she quickly turned into grumpy mad hot baby.
It was time for her next dose of APAP, made her a bottle of pedialyte and popped her back into her crib. I've heard no complaints so I am sure she is fast asleep. Have my A/C on to 74. I am FREEZING...but I will pay the slightly higher electricity bill and wear a sweater in May if it keeps my little Zber comfy.
Nubs
Wednesday, May 04, 2011
time for medication?
Ok- I'm putting it out there.
Joe & I have been seriously talking about doing some trials of medications for Bub's behaviors. For the past 3 months be has begun behaviors of self-abuse, and aggression towards others, mainly towards Joe and I, and started tantruming again.. The realistic part of me and the clinical part of me know that once a behavior begins, it is likely to continue despite my wishing it wouldn't. This is sucky. I really hoped medication would not be in my vocabulary for my Bub. I really was hoping non-pharmaceutical interventions would be enough. unfortunately, I am rethinking this position. boo.
I got a call from Bub's Occupational Therapist today. We have been talking w/ him lately about Bub's progress. well, really it's been a lack of progress for the past 90 days. At least he hasn't been regressing...I'd be crying my eyes out over that. So we are taking a 6 mo break from OT starting today. He'll still be getting OT at school, and since he qualifies for Extended School Year (ESY) and it is one-on-one unlike his school supplied Speech Therapy which is a group setting; he'll be getting it thru school during this time.
But I'm pretty depressed about taking a break. I mean, yes, it's that much more money we'll be saving because therapy is %*&@#! expensive even WITH insurance. Let's just say I could easily spend half my monthy salary on Bub's therapy. But it's not about the money, it's about what is best for Bub. If he is getting more frustration from OT than success/help, then it is better to take a pause and let him mature. It's just kinda heart-breaking, you know?
And then I worry about the hassle I'm going to have to go thru to get him back into therapy after 6 months. I'll have to get a new script from his pediatrician, which will probably include a yearly physical and the yearly lecture on how the CDC recommends Bub having these particular vaccines at this particular time. Yeah, I know ALL about the CDC. the CDC can bite me cuz here in Texas, -I- can decide what vaccines my kids get and when, thanks to my philosophical exemption that I keep up to date. If you don't like it, I will take my medical business elsewhere.
So after I deal w/ his pediatrician and the yearly vaccine lecture....then I will have to tackle my insurance co to make sure they will cover it...the whole proverbial, "you stopped doing it, so why start back again? Is this REALLY medically necessary". are you serious?!!???!
Then after that, I will have to have Bub have another OT assessment to find his baseline and then find out what his goals are and then hope he starts making progress again. Bub does not deal well with testing environments....yayee me.
So I'm thinking this might be a good time to start the discussion w/ his pediatrician about meds. I know risperidone and seroquel can be very helpful. I have seen them in action on other kids. I'm also reading up on Abilify which has recently been approved for kids with autism. Out of the three, Abilify seems to have the least scary side-effects.
This is a crappy situation to be in, and a crappy thing to think about, and a crappy thing to live. I'm feeling pretty crappy if you haven't guessed.
Nubs
Joe & I have been seriously talking about doing some trials of medications for Bub's behaviors. For the past 3 months be has begun behaviors of self-abuse, and aggression towards others, mainly towards Joe and I, and started tantruming again.. The realistic part of me and the clinical part of me know that once a behavior begins, it is likely to continue despite my wishing it wouldn't. This is sucky. I really hoped medication would not be in my vocabulary for my Bub. I really was hoping non-pharmaceutical interventions would be enough. unfortunately, I am rethinking this position. boo.
I got a call from Bub's Occupational Therapist today. We have been talking w/ him lately about Bub's progress. well, really it's been a lack of progress for the past 90 days. At least he hasn't been regressing...I'd be crying my eyes out over that. So we are taking a 6 mo break from OT starting today. He'll still be getting OT at school, and since he qualifies for Extended School Year (ESY) and it is one-on-one unlike his school supplied Speech Therapy which is a group setting; he'll be getting it thru school during this time.
But I'm pretty depressed about taking a break. I mean, yes, it's that much more money we'll be saving because therapy is %*&@#! expensive even WITH insurance. Let's just say I could easily spend half my monthy salary on Bub's therapy. But it's not about the money, it's about what is best for Bub. If he is getting more frustration from OT than success/help, then it is better to take a pause and let him mature. It's just kinda heart-breaking, you know?
And then I worry about the hassle I'm going to have to go thru to get him back into therapy after 6 months. I'll have to get a new script from his pediatrician, which will probably include a yearly physical and the yearly lecture on how the CDC recommends Bub having these particular vaccines at this particular time. Yeah, I know ALL about the CDC. the CDC can bite me cuz here in Texas, -I- can decide what vaccines my kids get and when, thanks to my philosophical exemption that I keep up to date. If you don't like it, I will take my medical business elsewhere.
So after I deal w/ his pediatrician and the yearly vaccine lecture....then I will have to tackle my insurance co to make sure they will cover it...the whole proverbial, "you stopped doing it, so why start back again? Is this REALLY medically necessary". are you serious?!!???!
Then after that, I will have to have Bub have another OT assessment to find his baseline and then find out what his goals are and then hope he starts making progress again. Bub does not deal well with testing environments....yayee me.
So I'm thinking this might be a good time to start the discussion w/ his pediatrician about meds. I know risperidone and seroquel can be very helpful. I have seen them in action on other kids. I'm also reading up on Abilify which has recently been approved for kids with autism. Out of the three, Abilify seems to have the least scary side-effects.
This is a crappy situation to be in, and a crappy thing to think about, and a crappy thing to live. I'm feeling pretty crappy if you haven't guessed.
Nubs
Thursday, October 02, 2008
tired tired tired
very tired.
very very tired
SOOO tired...
I just read 7 chapters about cardiac & related drugs.
half of these drugs do 5 different things and the other half have the most bizarre names like fluortetrahydrocondithiaminephrenia
...ok, I'm exaggerating, but still....what the cob? who are these people who name this stuff?
They deserve to be locked up in a room filled with the most boring people for 1 week a year just to comprehend what mass confusion/frustration they have initiated with these drug names.
And in boring...I mean people like the insurance sales man in "groundhog day"... -that- kind of boring person. not dull necessarily...more like annoying but polite so you have no tangible reason to smack them in the face...EVEN THO you REALLY WANT TO....you know?
ok, my sleep deprived mind is jumping off at the deep end. I think to sleep, perchance to dream would be an excellent idea for this student nurse.....
Nitey nite.
Neebs
PS- Bub starts the horseback riding therapy next week! YAYEE!
very very tired
SOOO tired...
I just read 7 chapters about cardiac & related drugs.
half of these drugs do 5 different things and the other half have the most bizarre names like fluortetrahydrocondithiaminephrenia
...ok, I'm exaggerating, but still....what the cob? who are these people who name this stuff?
They deserve to be locked up in a room filled with the most boring people for 1 week a year just to comprehend what mass confusion/frustration they have initiated with these drug names.
And in boring...I mean people like the insurance sales man in "groundhog day"... -that- kind of boring person. not dull necessarily...more like annoying but polite so you have no tangible reason to smack them in the face...EVEN THO you REALLY WANT TO....you know?
ok, my sleep deprived mind is jumping off at the deep end. I think to sleep, perchance to dream would be an excellent idea for this student nurse.....
Nitey nite.
Neebs
PS- Bub starts the horseback riding therapy next week! YAYEE!
Subscribe to:
Posts (Atom)
LinkWithin
