Second guessing yourselves......

[timer lady]

With media reports of adverse side effects of various medications & tragic deaths of children, I see :warrior: parents second guessing decisions made.

I wonder if the media reports hadn't been so sensationalized if second guessing/doubting would be going on.

I know that there have been some pretty intense reactions to medications by some of our children; I know that there have been some medications that just haven't made an impact. I also know that there have been FDA & media reports/warnings on medications used by our children.

I take a lot of the medication warnings shared here with (please forgive me) a grain of salt. The tweedles are watched closely - haven't been medicated with-o a great deal of thought, education & input by more than one psychiatrist.

I know, for my children, medications are a must; there is definite improvement in thought process, impulse control & dissociative symptoms.

I've had to tune out all the "hysteria" from all ends.

I'm not pro medication nor am I adamantly against medications - my concerns are for a high level of functionality. My children need the medications to stabilize so they can learn life skills. The tweedles are in a multi level treatment plan; medications are just one part of that plan.

Just a few thoughts for the morning.

 

[busywend]

Amen!

 

[SearchingForRainbows]

Linda,

I totally agree with your view on medications. Without medication, I do not think difficult child 1 would be able to function in a regular high school setting. After difficult child 2's new evaluations are completed, he will be put on medication if it is going to improve his ability to handle life's ups and downs on a daily basis. Or, should I just say, to handle life at all??? :hammer:

I think it is necessary to look at the whole picture. You're right - medication is only a part of the treatment plan. When used properly, medication helps our difficult children become stable enough to reap the benefits of their treatment plans.

husband and I weren't always on the same page when it came to medication. However, after seeing how much better difficult child 1 is doing, it has opened up his eyes. It is too bad medication is being given so much bad press. While it isn't for everyone, it definitely can help our difficult children achieve a higher level of functionality. WFEN

 

[mum2JK&TH]

Similar here too. difficult child couldn't and didn't function without medications. However, the fact that he has to take another medication to stop the side effects from the first medication does bother me and then there is the side effects from those.

I guess it's a case of whatever is the lesser of two evils.

I am on the fence about the media though. It is probably overboard and very negative but maybe it is stopping some from giving it to their kids who may not really need it or giving them more reasons to try other methods first. That was the way it was for us and we continue to read/see if there is any other way other then medications. Every morning I second guess my decision to put him on medications, but every afternoon that he comes home and had a good day at school, I know for that day I made a good decision. As long as I am second guessing though, I am always looking for other options.

 

[dreamer]

Sometimes the answers are not so simple even after much thought and input from several docs. I have been in so many meetings with multiple docs for my kids over the 18 years where one doctor had one opinion and another doctor had another opinion and a 3rd doctor has had a 3rd opinion. I have had my kids and myself get stuck caught in the middle while the docs fight it out, and while they get down and dirty and threaten to call CPS on each other or on me if my kids take or do not take certain medications.
I have had all the docs involved agree on a medication approach and then have serious end results with major reactions to those medications.
There are no perfect answers that are going to work across the board.
THere is nothing wrong with second guessing and rethinking things and reviewing and re-evaluating them when something happens in the world.
This is part of a learning process, and becuz most of these medications have not been safety tested in children and becuz the medicating of children for these problems has not been going on all that long (relatively speaking) it is not a bad idea for us to use these events to take another look at things. Sometimes we can learn from the experiences of others. Being aware and cautious is not a bad thing.

 

[wakeupcall]

The medication/or not decisions have to be made individually for each patient and their families. My difficult child is almost intolerable ON medications and without, he couldn't function, and neither could our family. I look at it as which would do him the most disservice? difficult child is on medications and has been for seven years, yet this morning at age 11, I fed him his breakfast and bathed him, to get him out the door to school. Without medications, he would still be in bed. It's a hard decision for many, but not for us.

 

[Mikey]

Dreamer, re: "There are no perfect answers that are going to work across the board. THere is nothing wrong with second guessing and rethinking things and reviewing and re-evaluating them when something happens in the world. "

AMEN! We learned the hard way that difficult child's issues are only part of the problem. He has these issues during adolescence, which is by definition a chaotic period of life, full of constant change.

As he changes, as his body grows, develops, and adjusts, his actions/reactions to his difficult child issues change as well. That's been one of the biggest thorns in my rear about this: just when you think you get something working, just when you sit down for a 5-minute break, suddenly nothing is working anymore and you're back in difficult child hell.

difficult child's therapist says the problem is the same, it's just that difficult child is also going through all the "normal" issues of being a teen, which makes things worse. Or, in his words, it's like saying "instead of just having the flu (which you can eventually get over), you end up with emphasyma as well (which you may never get over)"

After hearing from folks whose difficult child's have successfully made it to adulthood, I'm hoping that mine does too. I'm thinking that it isn't until the testosterone poisoning of the teenage years stops affecting their brains that they can actually step back, listen, and see what makes them a difficult child - then decide what they want to do.

Then again, like with my Dad, sometimes you're a difficult child your entire life.

:hammer:

Anyway, all I meant to say is how we deal with our difficult child seems to change on a daily basis. Even for the two years before he "came out" as a difficult child, when we thought it was only ADD, we were never afraid to change course when needed - whether that meant medications, treatments, or even doctors.

Life is never dull with a teenage difficult child. Draining, depressing, sometimes scary, occasionally fun and loving, but never dull.

Mikey

 

[dreamer]

Yes, MIkey, it can be ever changing and re evaluating the situation and second guessing does not necessarily mean simply do we medicate or don't we? it means looking at the issues of the time, looking at the current medications, the current doses etc and making adjustments along the way. It means using whatever information might have changed - whether that is symptoms in our children, lab test results, or new info about medications that might have just come to light. It means keeping an open and flexible mind and sometimes it means our experiences along the way can help wheteher we have good experiences or not- so others behind us can benefit from any possible new information our experiences might shed light on.
This exchange of information and experiences that any of us goes thru, any info we can add can be quite valuable especially becuz this science is so relatively new and not cut and dried. SInce the medications have not been formally tested in children, information can be gleaned from the experiences of others and can be quite useful and helpful food for thought. It can open doors for us to have a betetr open line of communication with our docs. That is never a "bad" thing

 

[dreamer]

I am trying to say that the 2nd guessing etc is important, hypervigilance and taking responsibilty for our children, keeping a watchful careful eye on them and the issues at hand, and being an active member of "the team".
The media can open the eyes of some who may not have realized some of the risks involved with some of the medications, and can help spur us to ask questions we may not have realized to ask previously. For some it offers a dose of reality to not become too complacent.

 

[susiestar]

I hate that the media goes overboard with some of the medical reports. Most medications have some dramatic story if you look hard enough. I know that when the reports about one eczema medication causing cancer came out many parents took their kids off the medication with-o talking to their docs. In reality, you have to EAT TUBES of the stuff to have the reactions that the media jumped on. My doctor actually READ the reports, gave me a copy to read, and we discussed the significance of the findings. This medication made my kids life much happier - it treated a painful problem with-o causing more pain.

So many times the media does not give a complete picture. I find it irritating and scary, but I am lucky to have docs that actually can discuss most of the reports intelligently.

Without medications my difficult child would be in jail. No doubt in my mind. And he wouldn't like himself much.

I think that the constant second-guessing that we already do is hard enough on us. We really don't need biased media reports to "help" us.

Hugs to all,

susie

 

[lordhelpme]

i am constantly second guessing but mainly cuz i have gotten so many different opinions on what difficult child has. first msw thought conduct then psychiatrist diagnosis bipolar. school thinks odd and Occupational Therapist (OT) thinks sensory is an issue where teacher and principle think not.

now at new community mental health place intake evaluation thought adhd though everyone else ruled this out and msw/new therapist thought Pervasive Developmental Disorder (PDD) based on notes but not so sure after seeing difficult child. so we will wait until apr 13 for new psychiatrist.

i again had someone today(works doing home visits for infants/toddlers) say 'bipolar the adhd of the decade' meaning it is the diagnosis de jour.

so as i read posts here and learn with-my own difficult child, how can you not second guess when everyone else is doing it for you?!?!?!

everyone balks about you using medications who doesn't have a difficult child and the school wants you to use medications yets discounts them if not working the way/as fast they think.

grr the whole system is just so screwed up and convoluted.

bottom line i will do what it takes. if it means medications then so be it. if it means holistic things like massage or essential oils then it will try it.

i think we all must remember that the majority of parents want what is best for their child and though we can get desperate we do what it takes.

 

[TerryJ2]

I took "second guessing" to be a negative... just the expression I'm used to, I think. In view of that definition, I never second guess my decision to medication difficult child because we went through every other plan b4 we did it--neurofeedback, counseling, dietary changes. My husband is a chiro and VERY anti-medication, where medications are not only a last resort, but paramount to evil, so I had to convince him that it was time for a last resort. The amazing results convinced him. I hope he tempers his opinions from now on.

Yes, it is clear that medications are only part of the treatment plan.

We've had to reverse some of our treatment... I couldn't even get difficult child to sit still long enough to explain the dietary changes to him, much less prevent him from stealing "forbidden" foods off of others' plates. Once he was on the medications, the diet changes went well and have continued to go more smoothly (although we have a LONG way to go!).

Sad to say, you can be highly educated and still not know what is good or bad in re: to drugs... I have a sister with-a degree in educ., and she pops a Tylenol out for her kids if they even look like they're going to spike a fever. (There's a big debate right now as to whether the liver effects warrant taking it off the market or making it prescription... I suspect Big Biz will win.)

I saw the rept's about the same medication that difficult child is on, and when I read further, saw that the heart problems and deaths only occurred to those children who already had heart problems. That doesn't mean I'll be complacent, but at least I won't be fretting every moment of the day.

I think it's about education and balance... and having an alert, sympathetic doctor.

 

[Hound dog]

Second guessing to me is a neg too. A parent can get so caught up in second guessing themselves and the docs that nothing really gets done to help the child. While re-evaluating a diagnosis, medication, treatment plan, ect is a periodic thing with most difficult child's. Behaviors wax and wane, and change as a difficult child ages and passes thru developmental stages.

Certainly if you don't agree with a treatment plan, medications, psychiatrist, ect. it is time for a new opinion. I'm all for 2nd opinions.

But I am not going to feel like a bad parent because N is bipolar and will require medications to remain stable throughout her life. (unless some new miracle treatment is found) Any more than I allow myself to feel like bad parent because T requires seizure medications to remain stable with his epilepsy. (by the way if you want to read some scarey medication reactions those will turn your hair white)

medications are an individual decision based on individual needs.

 

[DammitJanet]

Well I must be plain stupid because once I make an informed decision I dont second guess myself.

I consider myself a pretty intelligent woman who researches the options I have before me and then I make my decision. If I can make a change later or if something isnt working, then we make a change. Second guessing only keeps one in limbo. I want to move forward.

Nothing makes me madder than to see all those litigation lawyers on tv trolling the airwaves looking for people who have taken medications. Heavens, I have taken almost all the medications they talk about. Vioxx -yep, Redux-yep, Phen fen-yep, Neurontin, serzone, and a whole host of others that are out there. And now they have one that says...Have you taken a medication that causes Stevens Johnson Syndrome? Well, hello...any medication can! But I know what they are asking...and yes to that too.

Goodness, if I second guessed myself on everything I took, I would be afraid to put anything in my mouth. I certainly wouldnt take any of my medications. But then I would be a raving, cycling lunatic who lived in utter agony. No thanks. I think I will pass.

 

[timer lady]

I didn't intend this thread to be pro or anti. I didn't intend this thread to make judgments on those still searching for the answer for their difficult children.

It was more a matter of pulling back from the hysteria surrounded by sad & disturbing stories that are cause for sensation.

If presenting symptoms call for a second, third or fourth look at medications, therapy, changes in goals, I will do so.

And I had to step back at some point & see if what was decided would or could work. I knew the diagnosis's - it's pretty set in stone for at least the Reactive Attachment Disorder (RAD) & PTSD; I had to commit to a treatment plan for my children.

Recently a 9 y/o child in the upper Midwest died from a restraint applied inappropriately. I worry over restraints & yet once again it becomes a matter of safety for my children until they are stable once again.

For myself I had to step back & stop 2nd guessing - I had to stop wasting precious time & commit my tweedles to a treatment mileau. Right, wrong or indifferent the tweedles could no longer flounder while I searched for the "miracle" that wasn't happening.

 

[DazedandConfused]

For me it's a "quality of life" issue. Which is really just another way of saying "ability to function".

Now, I have to be forthright and admit that I was one of those anti-medication people once a upon a time. Of course, that was before I encountered GFGdom in all it's glory. The last straw being Daughter threatening to stab me for asking her to do a simple task (practice her clarinet).

The quality of my children's lives have been much improved by medication. Granted, it took some trial and error. And, that trial and error is ongoing. I'm always open to trying something new, or tackling something from a different angle, if I think it benefit the lives of my difficult children.

Yes, I believe that media can focus on a narrow aspect and blow it out of porporation. Like the "fill in the blank" causes cancer, or is "more likely" to cause cancer. But, once there is further investigation you find out it's only a .001 percent chance more!

The one thing I do try to avoid is giving medications to counteract side affects of other medications. However, if the first medication is making a significant difference positively, I certainly would consider continuing with it.

It's walking a tightrope everyday.

 

[Sara PA]

I, on the other hand, was very much pro medications until they made my son far, far worse than he had been without medications. I am a lot more cautious about medications -- all medications -- since.