does anyone else feel like they are in the provider twilight zone??

[confuzzled]

is it just me?

so far, we have a psychiatrist, a neuropsychologist, a therapist and a school therapist.

and i swear as i'm sitting here, one is more out there than the next. i'm paying a small fortune
to be told some of the wackiest things and to try expensive out of pocket, UNscientific-proven things. and no meeting of the minds on diagnosis's, to add insult to injury. and still no interpretation of test results to help pinpoint the diagnosis?? (so far, the test scores we DO have are *not* supporting certain things, and yet we are clearly missing something)

biofeedback? (no offense to those whom it works for--but its not covered by any insurance for a reason)

sand tray therapy? (but we dont interpret it???????)

art therapy??? (which sounds great, but is really just my kid drawing on her own, with no direction OR interpretation)

and, after not one, but TWO out of pocket intakes, 4 individual sessions, we have yet to make it to the social skills group, which is our whole purpose for this particular therapist....but hey, guess what? *I* now have two handy dandy diagnosis's for myself....of which i was not in search of, nor do i plan to treat with other uncovered insurance tdocs and experimental therapies. and each of these lovely sessions has taken three hours/each out of my life, since there is no "expert" in my area.

start.low.go.slow psychiatrist who doesnt like to "throw medications at a problem" thinking severe anxiety and adhd will be fixed with a BIP alone (which, according to my school paperwork we have, and yet i've never seen it, never participated in a meeting for it, have no idea when it was theoretically done, (yesterday? 5 years ago??) have no idea what it says, and will bet the farm its never been followed by anyone....of course, if there *is* one, its probably for the best that its not being followed)

oh, and my newest favorite: the dsm-iv is wrong. (my neurologist 'bout fell over at that gem)

and this crew was the best of the bunch.

honestly, is it just me?? cause i'm about to find a new psychiatrist if i cant light a fire under the current one and drop the rest of them, for good.
all i've accomplished is having an even *more* miserable kid, who now is convinced she has 465,387 things wrong with her. and i pay for the privilige--she was better of before most of this. and quite frankly, so was i.

 

[TerryJ2]

Heck, I'm just IN the Twilight Zone, LOL!

I did neuro (Bio) feedback and it was covered by insurance. You HAVE to been seen by a psychiatric or it will not be covered, IOW, if an assistant does it, you won't be covered. At least, in VA.

My easy child is majoring in Art Therapy. She would die if she knew people just let the kids draw on their own. You're supposed to talk to them WHILE they're drawing to, ahem, draw out their stories. And of course, you can look at the symbolism in the picture, too. But it's mostly the process.

I've never heard of sand (box) tray therapy. Glad I missed out on that one.

So sorry your doctor thinks the DSM-IV if wrong. He needs to sit on the board for the next print edition and put in his 2 cents worth.

 

[Hound dog]

I'm with Terry. I'm just living in the Twilight Zone. lol But yes, I've felt that way, more than once. At one point I was going thru specialists like tissue paper. Because darn it if I know more than they do there is a problem. No you're not just going to toss pills at my kid and hope they work. You're going to work with them and find out the problem first, then if there is a real need and no choice we'll talk about medications. Sadly, that was an "outside the box" concept for several of them. So very frustrating.

And when we found a therapist or psychiatrist worth a darn, we held on to them for dear life.

Never tried bio-feed back so can't comment.

Art therapy is a bit too subjective for my tastes......the results are going to depend on the child, what if you have a kid who is easily influenced by outside forces? Now that could go wrong in so many ways. ugh

Sand box therapy?? That's a new one on me. hmmm

But if you don't feel your docs are doing the job, listening to you/your child, and are making the situation worse......maybe it's time to seek another opinion.

Hugs

 

[Nomad]

You are too funny and guess what? A sense of humor really helps in this situation.
If you can keep it, that is a GOOOOOD thing.
I went through dark periods where I lost mine.
I suspect some things are a little "out there." Others, are just innovative. What works for one, doesn't work for another.
And of course, us parents when faced with a different/troubled, etc. child, are often prone to trying just about anything.
I think its good to personally investigate things, but to trust your own common sense and intuition.
Many of our kids seem to need medication along with another form of therapy, etc.
The confusing thing is that they have to do their own inner work to push through their difficulties and find health and happiness. This is sometimes very tough for them and causes anguish for all around them as well.
Hang in there.

 

[confuzzled]

yeah, i'm trying to keep a sense of humor....kinda tough when you are seeing money flying out the window (1,000+ bucks last month alone!). but hey, SHE's having a grand old time!

i'm just at a loss-i literally feel like we are spinning our wheels.

(and for the record, i seriously dont mean to make fun of a modality...if its working for you, great, but in our case, evidently we have, some, interesting providers, who dont exactly understand
how to USE these modalities).

i'm on the verge of taking next months $1000, buying the "home biofeedback thing" for $200, a bag of play sand and assorted happy meal toys for oh, say, $5,
and a new assortment of markers and paper for another $10 and spending the rest on calgon. she can go to town playing and drawing up a storm, while biofeedbacking
at my kitchen table. from what i've seen of these assorted therapies (much of nothing but freeplay), i'm pretty sure i could do the same for a lot less money and
aggravation.

seriously.

and then, if i can light that fire under the old-school psychiatrist (he's been practicing for 40 years, i was delusional to think experience would be key) for some medications, which are sorely needed, we might see some actual progress....

i'll move heaven and earth for her, and i dont care about the money--even though we arent independently wealthy, but for crying out loud, it better be helpful to her.

and, as for my diagnosis's....all would be solved with a giant bottle of xanax (which, mind you, *IS* covered by my insurance, lol!)

 

[DaisyFace]

Confuzzled--

I often feel like I am in the Twilight Zone, too. There are so many providers who just don't "get it".

I can't tell you how many times I have sat in on something and just wanted to scream.

Keep searching. There has to be SOMEBODY out there who can help...

 

[Sleeplessof2]

I'm new to this forum and have had my own dialogue with a few of you. Don't think I have had a chance to meet you--- "Confuzzled". But by gholly why can't you people live near me??? I'm sorry that you are going through this hell, but as a newcomer I can see the writing on the walls. My difficult child is just 7 and we have been researching on our own for the last 2 years (consistently) as to what kind of monsters are disturbing his young mind. Got fed up with docs. and decided to do this on my own. I obviously know that I will eventually need more advice than a forum and my own research, but honestly I have learned more in that last few days from this forum than I have in the last 5 years dealing ridiculous docs advice. Although, I cannot inform or advise you as I am in the early stages of this madness, I can relate to your frustrations. I wish you the best.

 

[trinityroyal]

Confuzzled, I agree with DaisyFace's advice to keep searching.

We left difficult child 1's last-but-one psychiatrist the day that I found myself in an appointment picking up the whiteboard markers and starting to draw process diagrams for her. When she remarked, "Gosh. I wish our department had a budget to bring you in and train all of us on this stuff.", I knew that she was not the right professional for my difficult child 1. We hit the jackpot with the next one. He is the best. Really understands the therapies and the medications.

Keep fighting. It's a long and onerous process, but there is someone who can provide the right sort of help for your difficult child.

 

[Robinboots]

Short answer:

YES!!!!!!!!!!!!!!!!!!!!!

ALL the providers available, ALL say one thing and do another. NO ONE will help. I thought we'd take care of things Monday, I thought maybe Weds. Now I have a ray of hope for today, and I'm pretty sure that will fall through too.

I'm sick of everyone.

 

[confuzzled]

(((hugs to robin)))

i'll split my bag of sand with you

i'm glad to hear im not alone....i'm about done too. i really think bad providers are much, much worse than none.

and i'll let you know if i find help on a friday, or a tuesday....
'cause i'm thinking probably not...

 

[susiestar]

When you find a therapist/psychiatrist/anydoc like that just walk away. You have seen enough to know they are not going to be useful. We saw countless tdocs with/for Wiz before we finally found a psychiatrist and the tdocs she worked with. Even then we got one post-doctor baby therapist who was an idjit. He did a few drawings, played a card game, wanted yet another sticker chart after his boss told us to give up on them the week before - notes were on the top page of the chart the idjit was looking at! Final straw was telling us to use tokens and pay Wiz to be nice to Jess. Boss therapist pulled him off our case for that.

I even had one therapist who wanted to diagnose Wiz solely based on the bumps on his head. This was proven to be nonsense many many years ago but this fool SWORE that it was 100% reliable. He also swore that the bumps on Wiz head meant that he was suffering from some form of demonic possession! It was nuts, just nuts.

Keep searching until you find a decent therapist. They are out there. In the meantime the home biofeedback can be very helpful for anxiety (just ask the mom here who got the stresseraser - might be manster's mom?) and the sandbox would get my $$ before the sand therapy would. They have some handy playtables for sand now. But if your child got upset they could make a huge mess by dumping it over!

 

[Robinboots]

Thanks! I'd swear our psychiatrist was nonexistent, except I've met him a few times....

 

[TerryJ2]

I say, split the Xanax between the two of you.
Throw the invoices in the sandbox.

So sorry.

 

[dirtmama]

I'm so in the same boat, over the last 4-5 yrs we've gone to all the few doctors. and therapists with- in 2 hrs drive....and we still have no answers...they are still throwing medications at symptoms that don't seem to help much. and i was just told yesterday by the faithful therapist who's pushing for a neuro/psychiatric exam referal (dr against it) that pychiatrists don't do evaluations and testing they just throw pills at symptoms???only psychologists do testing?? it seems to me it's all pass the buck. i'm at wits end with- all this ****! everyone is so scarred to diagnose a child or doesn't know how. I think it just takes too much of their precious time to dig that deep and really get to know the patient.
***that is why i have a fantasy of dropping off difficult child-unmedicated- at dr.s house for the weekend***
If they don't know the answers then they should start educating themselves (like we do) and do their jobs. That's why they get paid the big bucks!
Confuzzeled, as a side note notice the rx's of our difficult children? coincidence? i don't think so?

 

[Sleeplessof2]

Gotta love dirtmama's *fantasy*!!!

We met with a psychiatric. last summer. Whata waste! Everytime she suggested a "new idea", my son was the one that told her we "tried that but it didn't work". And he was right. Finally after about 2 months of seeing her, her assitant called to let us know she was sick and wouldn't be able to make the appointment that day. She went on to say that the doctor. would personally call us to reschedule. Never recvd. a phone call. That was my sign to end the silliiness. 2 weeks later my husband and I were out to dinner. I went to the bathroom and there's the doctor. I bit my tongue as I walked past her and she had the nads to say Hi to me. She just didn't have the knowledge/experience or the genuine concern to give a damn about us.

 

[DammitJanet]

In my state its a combination that does a diagnosis.

Let me give an example.

When I had to go through intake with mental health, I did alert them to what I had been diagnosed with before however their psychiatrist met with me in an office and asked me a bunch of questions. Quite a thorough exam. It took about 2 hours or so. Out of that exam came my bipolar diagnosis (again), borderline (which was new to me), my other AXIS diagnosis's, and a written report.

Now after this, I was sent to get started...or restarted on medications with a recommendation to start therapy. The therapist took that report and looked at the psychiatrist's diagnosis's and we started treatment for those. It was up to her to decide if she truly felt those applied or if they were invalid, or if others got teased out over time. I have acquired a few things over the years that werent there when I was dxd. Especially since the meningitis. I have some executive function issues and some cluttering that wasnt there before. She will add this to my psychiatric report, not the doctor.

 

[confuzzled]

maybe i should have mentioned we are on psychiatrist #4 and therapist#2

since november.

i'm kind of running out of docs, lol. (like i said, these remaining were the BEST of the lot, really scary)

even if i take the diagnosis issue (so far, the mood disorder is the only keeper--probably major depressive with anxiety) out of it and just focus on the sx's....well, i still literally have no constructive reccomendations to help her. no idea what we should be doing differently.
and no one seems to get that all these appts with these wacky people are ****** with her head....she honestly DOES think there a million things wrong with her because of it.
great way to bolster that self esteem.
we too are way beyond sticker charts et al.

behavior, in my world, is *ALWAYS* a form of communication. before attempting to modify it, you really need to find out the underlying reason...and there always *IS* one.
she's speaking volumes--of what, i dont know, since the so called experts are busy letting her play in sand without interpreting it.

i'm going to go out on a limb and say there is some kind of underlying Learning Disability (LD) which has to be frusterating beyond belief. school just identified a "math disability" (which one is beyond me, nor is mention of it in the report or in the exactly 3 reccomendations the school gave...which was really 1--present materials at a (much, much, mucho much) higher level...i cant wait to see how thats implemented in spEd. however, i wont have any more thoughts on that subject until the rest of the neuropsychologist test results are analyzed...and since they appeared to be missing in action, i wont know the results for another few weeks--as in, literally, the day before my iep. nice, right?


one would think that this is what i pay people for. and to give me some kind of reccomendatons.

but i guess i expect too much.

and i think we should load up every kid here and drop them off at a psychiatrist's for the weekend....now THAT would be an experimental modality i'd be in for

 

[totoro]

This would be why we have moved across country and are on our 5th psychiatrist and looking into many other academic options for K and who knows what else!!! We are now only doing therapist psychiatrist and Horse Therapy! That is it, these are the good things for now.

We are coming to terms with the fact that maybe no public school is good for a BiPolar (BP) kid...