Plain talk about medications and our children

[AnnieO]

I used to be so anti-medication it wasn't even funny. But I've learned a LOT since I acquired Onyxx and Jett as my kids.

And...

Bio's doctor would ASK what we wanted him to Rx. So Jett ended up on Concerta, when we thought he was being evaluation'd for dyslexia... And 18mg turned him into a first-class, A-one BRAT. So bio had it increased to 27, then 54. Behavior got so much worse... We finally weaned him off because he was living here and we just couldn't have him melting down all the time. And the behavior got much better, off the medications. Turns out, he doesn't really need them.

At one point I took Onyxx to this doctor, because she was having headaches (and he agreed with my thoughts on sleep deprivation). So he asked me what I wanted him to Rx. Um, I don't know, you're the doctor, what do YOU think? Onyxx ended up on 1500mg of naproxen 3x a day - no, I'm not kidding, 4500mg/day. NOT PRN. husband and I used them PRN and cut them in half. (She also at one point was on Seroquel, Zoloft, Wellbutrin AND something to help her sleep - all at once - yeah, that got discontinued. TWO AD's?!)

NOW... Yes, Onyxx needs medication assistance. Let's start small, though. Jett? Zyrtec PRN... We revisit the medication thoughts every year with the current doctor, and he's not thrilled about the idea. He's one that won't Rx antibiotics for a cold... We lucked out!

husband has to take gabapentin, simvastatin and has Tylenol 3, PRN - as well as occasional other stuff. Me? Rx vitamins, other stuff as needed. If I have depression issues again, lexapro was a miracle for me. But mine's situational - thank goodness.

So... I think if there's a diagnosis, and it's started small, medications are good - but - not every person (regardless of age) needs them...

 

[Hound dog]

Nancy, that is where my frustration lies with the mental health care system as it stands right now.

We really really need some major research being done with the neurobiological aspect of mental disorders. Ok, not all are going to have a physical basis, some are due to other factors, but for ones like bipolar, ADD/ADHD, the autism spectrum, schizophrenia ect.......having specific blood / imaging tests to help pinpoint dxes quickly and more accurately would be a Godsend especially to the children.

So many parents go through a long list of dxes before the "real" diagnosis is pinpointed. So many kids fall through the cracks and never get an accurate diagnosis.

I certainly hope that poor little boy will get some major help now that he finally has his diagnosis.

I can see Evan being slapped with a mentally delayed and adhd diagnosis. I won't be surprised if he already has it via the school. Katie refuses to take them to the doctor they need to go to for the evaluations for autism. (too lazy and it's in cincy) So Alex is just stuck with his MRDD diagnosis when his autism and Sensory Integration Disorder (SID) issues pose just as many problems for him, and heaven only knows what dxes Evan will have by the time they're done with him. Katie has told me for 2 yrs she wants that kid medicated, Alex too. ugh

The worst lag in medicine is in mental health.

 

[BusynMember]

Some psychiatrists get "stuck" on a diagnosis too, like our psychiatrist with the newly recognized childhood onset bipolar. He preached it to me and I got involved with a parent group that thought everything was bipolar (any raging child) and it influenced ME, as Janet said. She's RIGHT. I thought any child who raged had bipolar, but that was nine years ago and I learned a lot, including not to trust every psychiatrist's opinion and to get second and third opinions, if necessary.

I agree that we need to do a lot of research into the neurobiology of brain disorders/differences. It would help us all a lot to be able to know for sure why our differently wired children act like they do. And then maybe instead of being guinea pigs, our kids will get help a lot sooner. Adults too. This is still an evolving field. We are nowhere near the answers.

 

[DammitJanet]

Well I do think there is early onset bipolar and I believe in the new temper dysregulation disorder. That is what they have now dxd Cory with looking backwards. He isnt showing the adult onset bipolar symptoms. He is showing the symptoms of ADHD severe impulse control and horrible executive functioning issues. He has outgrown the temper and manic symptoms. Moods have stabilized. However for me, I have no doubt I have always been bipolar. No doubt at all. I present with all the symptoms that you would read if you went down the checklist for early onset bipolar pretty much except I dont skip school and refuse homework...lol.

 

[BusynMember]

Janet, I believe you. I like calling it temper dysregulation disorder in children though because nobody knows what mania in kids looks like...not sure if that makes sense, but...I'm trying. I definitely had terrible depression as far back as toddlerhood and I had good years and bad years (but my "good" years were still not good). I did have the symptoms of what is called early onset bipolar, but I don't remember feeling manic/happy. So, say, if I were a little kid today seeing a psychiatrist, I'd probably get an early onset BiPolar (BP) diagnoses. Now for certain I have a mood disorder, but for the most part it was debilitating depression with one obvious hypo-manic episode. Is that bipolar? I don't know. Nobody knows yet. And that's the problem...those kids/adults who are in that gray area. I did try Lithium and it made me so lethargic and spacy that I felt like I was in a dream and that scared me. I never was open to mood stabilizers after that and the Paroxatene/Clonazapen combo seems to be doing the job. Very tricky field here.

 

[DammitJanet]

I am not open to ANY anti-depressants because of two trials I did...lol. One was so bad that I almost lost my family. I wont go into details but lets just say that libido wasnt an issue for me. But I was miserable. I didnt sleep for over 3 weeks and I was working while this went on.

I have always had what I can only describe as either extremely rapid cycling or mixed cycles. Once I got medications on board I was slowed down to where I cycled more like once a week or once every two weeks and I was thrilled to death! I didnt realize that anyone would think that was even too rapid. I couldnt imagine that just having one episode would constitute grounds for giving someone a diagnosis. Heavens havent most folks melted down once in a blue moon?

 

[InsaneCdn]

On the "awareness" vs. "more cases" theories...

One of the reasons we're seeing more of these dxes floating around - both in list of possible dxes, and number of kids with these dxes - is that the world has changed faster than our genetics can cope with it.

Even 30 years ago...
- classrooms were QUIET, orderly places
- bed-times were bed-times
- almost no technology - TV was the biggest culprit back then, and if you had one, it was ONE and the parents controlled it.
- way more fresh air and activity
- extended families tended to be closer together

Which meant... that many of the things that have become issues now, were non-issues then. We slept well. We ate well - mostly home-cooked meals, rare to eat out or have "easy" meals like now. We weren't exhausted at school - unless you were from a "rough home" (i.e. abuse/neglect). We didn't have trouble hearing the teacher. Group work was a SMALL part of our learning. If one student couldn't sit still, they were "punished" with physical activity... if half the class couldn't sit still, PE came early - or twice. These things gave many of us (like myself) just enough of an edge that we survived without the dxes and interventions... If I had to go to school NOW, I'd probably need a half-dozen dxes and unending interventions and accommodations. Plus... even 30 years ago, it wasn't the end of the world to not get your grade 12... if you "weren't a student", you got 10 or what you could of 11, and went to trade school. Journeyman papers were as much a badge of honor as a 4-year degree.

Not that school is BAD now. It serves the needs of a different 80% of the population than what it used to serve back then. (different rant, of course - see "one size fits all" subject on a different thread...)

So... are we seeing more diagnosed kids? I'd say yes.
Because they are being mis-diagnosed? I'd say that mis-dxing only accounts for a small part of the rise in numbers.
Because we recognize more issues? Definitely a factor.
But mostly... I think its just because we, as human beings, were not created (or did not evolve) to live in the kind of world we live in today. So... the "edges" of human development are now far more problematic than they need to be.

Can we fix that? No idea.

 

[Hound dog]

IC you do make a very valid point. I agree it's a factor, probably a strong factor.

Still the misdx ect are huge, much more than people care to believe, or even want to believe. I've been exposed to mental health my entire life from both sides, as the worker as well as the parent, niece, daughter ect trying to get help. Pediatric psychiatrists are overworked as most psychiatrists prefer adults. It's hard to find a pediatric psychiatrist around here and I have 3 major cities all within an hour drive from me.......when you do fine one they're so over booked it's an assembly line, you sit in the chair, doctor asks maybe 3 questions, you get your script and you're done. Most of those docs have little choice or else they'd never be able to see all their patients, many of them are as frustrated as we are.

But I do agree with you. We became a high tech society while we watched family "norms" suddenly transform almost overnight away from the way it had been for thousands of years.......the two together would almost have to be a strong contributor.

I was diagnosed severe ADHD as a young child (pre school age) back when the diagnosis was first coming out. No medications. My mom tried them out of desperation and it turned me into a zombie literally. It scared her and she refused them after that. There were of course no IEPs or any other real interventions. The best we had was special classes for the deaf students and 2 classes for Special Education MRDD students. Yet while I had issues in school they were nothing major and I managed to pass.

I do remember the extra recesses, the extra PE classes, the jobs the teacher would find for a restless student to do as punishment. I remember spending a few years with my desk right next to the teacher so she could keep me on task.

I'll tell you what, the way classrooms are now and the rules and such..........oh man, I would have been a piece of work as a kid. No talking during lunch? Are they insane or just stupid? No recess just lunch with maybe 15 mins to play if you're lucky. We had a half hour to eat (and it was real homemade meals cooked at the school and trust me we ate them!) and a half hour to burn up energy.......but we also had a 20 min morning recess to do the same thing. Group activity, uh I had major issues with the rare group activity we had back then, I'd be in big trouble in a class today. (and this doesn't change at the college level either, does not work no matter what level so why in the heck to they insist upon it??) The homework is ridiculous. Now somehow I learned all I needed to know without 4 hrs of homework every night. (and this is grade school not high school) When is a kid supposed to be a kid? From what I see monday through friday they're going to be lucky if that happens. No wonder our kids are stressed out. Then you add afterschool activities and omg!

Ok.........um schools are a sore spot with me. lol I believe firmly in kids need a good education. But I believe just as firmly that a kid needs time to just be a kid for normal development.

 

[DammitJanet]

I Keep telling Cory to let me homeschool Mckenzie...lol.

 

[InsaneCdn]

Lisa -
Some of the impact is simply lack of sleep.
Not that we didn't TRY back then, but...

Today's cell phones have batteries that last for DAYS without charging, even with 24/7 texting going on... How on earth do you shut THAT down? (I know, take it away - but that creates a major fight, and we didn't use to have that kind of or frequency of fights over sleep...)

When I was a kid... I tried reading under the blankets so I could stay up and finish a book (always had a book to finish)... Dad got smart... always left the flashlight where it was easy to find (not obvious, but just the kind of spot I would look), and always had it loaded with the cheapest batteries around... back then, there was "junk" batteries that would last about an hour in the flashlight... which meant, of course, that I only got an hour of reading before the flashlight went dead. No fight. Nothing ever said. Flashlight was always put back - and had a fresh battery every 2nd or 3rd night. Self-limiting. I got what I wanted - but so did my parents. I rebelled and read under the covers and ignored their lights-out. But, I still got my sleep. (I don't think you can even get junk batteries any more...)

 

[Hound dog]

About the technology............. Well, I was strict with my kids. They had certain ages they had to wait for to get things like cd players and the like. They were never allowed a computer, even if I could have afforded it. I'd have laughed at a cell phone. (and did many times) They had a video game system ONLY because it was therapy for Travis......and that too was strictly regulated as per time and when they could play.

I know parents convince themselves that all this technology is necessary. I don't buy it, not under 18 it isn't. My kids never had a cell phone until they were 18 and they bought it themselves. Nichole got a computer at 16 but it was purchased by the school for home school online and was locked out of normal web surfing. Parents give in to the tech stuff because it's convenient to do so for whatever reasons they tell themselves. (which I admit some of those reasons can be good, but there are other ways to achieve the same thing without the high tech) And it's not that I don't believe our kids should learn high tech, it's just that I believe it should be strictly limited and supervised.

The worst excuse I hear is that they won't be on the same level tech wise with their peers. phht. ok. My kids sure don't have an issue that way. Parents need to find a balance. I won't buy my grandkids electronic toys, not even learning toys. (I didn't buy them for my kids either) I buy your fairly basic need your imagination type toys and so far the grandkids go gaga over them. I have no problem with what anyone else chooses to buy them.........and they do have a lot of techy stuff........I just won't do it. I want them to have the opportunity of the same type of old style play that is good for normal development. Ok, well, there was one exception; Evan........I was going to buy him Alphie for xmas because his mother won't teach him anything, and I got him a leapster for the same reason. I figured he's got to get it from somewhere. ugh

I had to lol over your reading in bed past bedtime. Darrin gets a tiny flashlight and 1 book. So far, he falls asleep within 15 mins. lol easy child counts it toward his daily reading.

 

[buddy]

You know Lisa, I struggle with this. Q has, except for his game boy which DOES help with transitions and is not the internet one...NONE of the gaming systems. We do have a shared computer and he is so obsessed and limited in what he looks at, and I monitor every single site with a parent monitoring system that I do review every night because it comes to my email.

I dont justify why I let him have some of the things he has, like his christmas present. I decided I didn't want to risk inappropriate phone behavior. But, really I got it for him becasue he always feels different. Always has to earn every single thing. Nothing is just given to him because he is a good kid. I wanted him this year, to get what he really wants. It is really the first time ever. Makes me sad to say that. He has always gotten some things he likes, but even this time it is a little different because he wants the phone. It is probably and old issue for ME, but when he says he feels jealous and like he will never be able to get anything, he is actually right. If it depended on significantly better behavior, he probably wouldn't/couldn't. I am going to give him the chance on this one. It is not educational, it is not because he will be behind if he doesn't get it, it is just because I want him to have something he really will like and enjoy. Just because he is who he is and I love him. If it blows up in my face I will have learned a lesson, sigh.

 

[TerryJ2]

The biggest two problems are:
1) getting the right diagnosis, and
2) getting all of them.

I agree. I think this is the crux of the issue. Parental education, medical community education, training, diet, routine, and then medications. Last, but not least.

 

[Andy]

I think that InsaneCdn is on to something. Our lives have become so fast paced with less daily structure and contact with extended family and classroom sizes are expanding to a crazy number that some of the securities are not there for the kids. Parents don't know how to be warrior moms and dads and sometimes too easily listen to teachers and docs not realizing that they also are humans, not always the experts they need to be in that situation. They really don't see the whole picture and parents don't always know what to share as important details. We see the most success when EVERYONE, parents, teachers, and docs are on the same page, showing real concern for the child as a person and working together to come up with the best solution in a balance of teaching the child tools and offering medications. Tools and medications often times go hand in hand. Medications will help you maintain control/feel healthier and use the tools to make the choices you want to make.

I have heard that there is one class in our public school that by the time Christmas comes along just about every student is diagnosed as ADHD. I think there is a teacher out there pushing for medications to control her class because she is not able to function in an active oversized classroom. Classroom sizes are too large!

Parents don't always know what the normal development is for their child so when a teacher or doctor of a student in the younger grades state that medication is the way to go, parents may agree just because they trust the teacher or doctor or the teacher or doctor push it on them making it appear the only option if they want to be a good parent. They sometimes let that trust overturn their own uncertainity or instincts.

Then there are those teachers that believe EVERY kid should be able to "toe the line" without help and for those parents whose instincts are that something is wrong, they are receiving a message that their kid is just rude, lazy, disrupted, ect. but no need for looking at why. In the teacher's eye, the kid can and should be expected to turn it around himself. Not knowing how to be a warrior parent, the mom or dad do not know that they can follow their instincts and find some help that may mean medications.
difficult child hates to read and told me he had trouble with the contrast of the paper and words. A teacher in 7th grade not knowing his diagnosis and history told me that it was because he just didn't want to, that he was being lazy. At that point I knew it was more than that and I was able to warrior past her to look for more input, options and answers. Many parents would take her word for it and just go home and be frustrated, perhaps getting angry at their child and telling the child he is what the teacher said because after all, she is the expert.

So, my answer is "yes" and "no" like many others, some kids are overmedicated and others are not getting the help they need which may include medications. Each kid is unique and each situation is unique. We will never really know the answer unless we could study each and every child (medicated or not).

 

[Malika]

It's interesting in that I am talking from a culture which is basically like the society of old that IC was talking about - traditional, extended family, disciplined environments, bed-times, comparatively limited access to technology, etc. And while that is good for children, probably, it also goes hand in hand with the fact that here difference is a difficult concept and there is not much understanding of behavioural/neurological disorders. You diagnose too much, too quickly (or wrongly) - here there is the opposite problem. If only there could be some middle way...

 

[AnnieO]

Random thoughts:

Jett's 3rd grade teacher told us that he needed to be medicated. P/T conference, 2 months in; Jett had lived with bio until just about 4 months before the conference. I very quietly said, "Mr. G, I understand you believe this, however one Jett has gone through some extreme transitions in the last few months, and two, I would appreciate it if you would not mention medication again until you get a degree in medicine. This conference is OVER." husband and I got up and left. (This was before I found the CD board.) The next week, Jett was in a different classroom. (Not knowing what to do, I sent a letter to the principal and CC'd the School Board and State BOE... Yeah.) I honestly think husband was shocked, but no teacher is going to tell me what to do regarding medicating my child. (They can always suggest an evaluation and tell me their observations...)

Staying up until all hours, video games, cell phones, and so on. IC, I need one of those batteries, I've never had a phone that lasted days... Maybe one if I didn't use it AT ALL. I keep a charger at work, one in my car, 3 in different places at home... Bio gave Onyxx a cell phone at age 10. It was the source of much drama (when she lost it to us for her behavior and then stole husband's, attacked him, and other stuff); when she was 13 we replaced that with one on our plan that could be locked down. Jett had a TV, VCR, DVD player and Playstation in his bedroom at bio's. We wouldn't allow the kids TVs in their bedrooms at all. As my Mom put it - I could have a TV when I could pay for it... For a long time, Jett was not even allowed to take his Nintendo DS in his room. Not ever.

I, too, read under the covers, and was always a night owl, but I got plenty of sleep. I still need my sleep - without it, I'm an A-1 witch.

 

[BusynMember]

IC, although your ideas make good sense in theory, I'm not sure it's really true. And I go back to myself again and the fact that I was miserable my entire childhood. I had no technology but a television, which I really didn't watch too often, and an old-fashion RECORD PLAYER (remember them?) lol and a black dial telephone that didn't move away from the wall...lol...yes, I'm old. I was born the way I was. I remember thinking so as early as six when I felt like crying and asked myself, "I'm different. Why am I different?" This moment has stuck with me for life. I had an awareness that I was not the same as my peers, that they coped better than I did, that they had more friends, that they didn't like me, that I was somehow not "right."

Encyclopedias...remember them too? (lol) I would go through them to try to find out what mental disease I had because I was sure I was mentally ill. This was at thirteen. Also, I slept pretty well, but had nightmares a lot, but did not really feel tired most of the time. Although I had home cooked meals, I also had home cooked cake and cookies and I think most kids of my day were less aware of nutrition than we are now.

I think we have to be carfeful about blaming changes in society or getting too maudlin over "how it used to be for us." There were problems then, but we buried them. Seriously disordered kids were sent "away" and half the time neighbors never knew about them. I remember a little girl who lived across the street was mentally slow and she didn't even live at home. She was a family secret. I also remember my mom talking in a hush-hush tone about a friend of hers who had a child who had an epileptic daughter (THE HORROR!!!!!...sarcasm here). The friend used to visit our home with her son but never with her epilpetic daughter and I never knew what happened to her either.

One day 2011 will the somebody's "good old days" lolol.

Janet, back to you...I'm not a big AD fan for kids either. I've had terrible reactions to many AD's even as an adult. I just know that my childhood was so unhappy...I used to wish there was something somebody could do. I got tired of being told to "snap out of it!" I couldn't. I really don't have any good answers.

 

[InsaneCdn]

MWM -
I do not believe that it was better 30 years ago for ALL situations.
The ones I'm most familiar with... are ADHD/ADD, Developmental Coordination Disorder (DCD), Auditory Processing Disorders (APD).

For Auditory Processing Disorders (APD) - the school situation was definitely a major advantage 30 years ago.

For ADHD - IF you had a good school/teacher where they understood the need to burn off steam... it was a partial advantage.

For Developmental Coordination Disorder (DCD) - back then, they knew how to teach handwriting at the physical level, which helps if you have a moderate fine motor skill problem. If the motor skills problems are severe, there was no technology - no scribe, either. And the gross motor skills issues were just ignored.

Mental health issues? we're probably as bad now as we were then... more aware, but not necessarily accomplishing much more.

 

[Nancy]

Step 2 - I guess I have heard this before but in our area teachers are not even allowed to suggest that the parents take the child to a doctor, let alone that the child should be medicated. If the teacher suspects something is going on that needs to be addressed he/she follows the procedures requests to have an evaluation done in the school setting. Never do they suggest a diagnosis to a parent or suggest the child be taken to a doctor or medicated. They present the finding and leave it up to the parents. I have seen where this approach has delayed the dianosis and/or treatment of a child but it's catch 22. I agree it should always be up to the parents but believe me it is fairly obvious to a teacher when something out of the norm is happening.

Nancy

 

[AnnieO]

Nancy, you're right. They are NOT allowed to suggest it; they can only suggest evaluations through channels.

However, with all the upheaval in Jett's life - moving from residential at bio's to residential with us, knew NO ONE but us, some of the antics from bio... A easy child would have been a little distracted!