i think dr.s are out of their minds

[Jena]

good morning to everyone,

so i had to jump on this morning quick and say this much. i do believe that dr.s are out of their minds, yes i do

i got the diagnosis of my little difficult child hence anxiety disorder which i knew and have always known and supposedly depression. sorry not buying it i'm truly not.

she was up two times this week at 2 a.m. saying how she couldn't sleep even on chlonidine then up all nite then functioning on very high level days that followed after no sleep.

that is bi polar. she does not have a "sleep disorder, or apnea" or is not sleeping the past 9 years of her life because she was born depressed.

reason no diagnosis of bi polar. she does not exhibit the behaviors of mania in school. yet at mtg the other day with school staff the teacher says it's so strange the days you tell me rin didn't sleep the night before she functions as if she isn't even tired. i said yes and why do you thin that is? she responds umm duh i dont' know. i said its mania that is mania in it's truest form you idiot is what i wnat to say. so when you are reporting things to a hospital of which i paid a fortune maybe just maybe you should of mentioned that one important fact. or how we can have one week where academicaly and socially she's great and the next she's withdrawn and depressed with no outside reason as far as we can see as to why the sudden change. hw one day she wont' even talk to a kid then the next day flies up infront of classroom blowing everyone's minds and does full presentation to class ona topic.

it's so aggrivating. so now i'll proceed like my kid is just depressed not undercutting the effects of that at all but yup we'll attribute her lack fo sleep her violence her oppositional behavior al to the fact that for some reason my kid was born "depressed".

now i don't mean to sound like a lunatic this morning which i'm sure i do. but i'm beginning to think i can diagnos my kid better than these brainless doctors can.

so here's hoping that with just therapy weekly the group in school and modified work we won't see the swing again like i have for the past ummmm 5 years.

i just dont wanna be here again next year confused searching for answers, etc. something tells me i will be.

they say they menaing the school pyschologist well if i'Tourette's Syndrome bi polar you'd do the same exact thing for her. i said no actually i wouldn't. sure i'd do therapy yet the drugs would be necessary for her to maintain a stable self. now i'm winging it with no medications' and keeping fingers crossed like i always do.

doctor attributes swing in her behavior and in her functioning to the depression saying well there are highs and lows in depression. i said yup there is in bi polar as well infact that is one of the key components hence the word "bi".

ok thanks for letting me vent this out. it's just so so aggrivating i could just smack someone preferrably a doctor. i almost wanna cancel the credit card of boyfriend's so that they can't charge us anymore.

Jen

 

[smallworld]

Jennifer, no one on this board can diagnosis your child. Only doctors can. Getting to the bottom of what's going on with your daughter includes ruling in or out physical conditions, such as a sleep disorder (only a sleep study can do that) and seizures (only an EEG can do that). If all the physical stuff checks out, then you need to assume it's emotional.

Only a child/adolescent psychiatrist who has experience with mood disorders can tell you whether or not your daughter has bipolar disorder. The diagnosis is not based on tests; it's based on observation and good clinical judgment. If you are truly having difficulty nailing down the diagnosis, you might seek out an evaluation at a major teaching hospital that has a clinic well known for its pioneering work in childhood BiPolar (BP). These clinics are listed in the book The Bipolar Child (pages 61-62); two of the clinics are in New York state. In addition, NIMH in Bethesda, MD, is conducting studies on childhood BiPolar (BP). If your child is accepted into the study, the evaluation is free.

 

[Jena]

hi

maybe you misunderstood my ranting i was venting...........forgot to mention that lol. after being up with her yet again second night this week until the wee hours.

it's just frustrating, completely and totally to me that school staff isn't even aware of such things, and able to see the signs when they clearly present themselves. hence hindering the overall recommendation of doctor.

i wasn't looking for anyone to "diagnosis" her i'm just ****** at the lack of competence in educators as well as dr.s i've run across the past 2 going on 3 years now. their all sittin gthere prescription pad in hand and oops it's this, it's that nope it's this try that.

so the piont i'm getting to as im sure many parents have been is hey hang on a shingle on my door let me collect the $$$$ for all of it, not the doctors who have absolutely no clue what they are doing.

their all out for hte money the bottom line. what happened to doctors who want to help people, to doctors who can and do take the time to properly diagnose a patient.

even my own dr. he's got 6 waiting rooms you finally get called then you sit in the "room" for half an hour waiting then you feel rushed because their asking you quickly ok wha'Tourette's Syndrome up what's the problem and diagnosis ing even us quickly.

it just bottom line stinks in plain english.

ok i'm done ranting for now lol

thanks though i will look into what you said although i will as i stated move forward wtih this approach first see what she gets out of it and if i see the dip yet again then i will look into more testing. have to pay this off first and even though if they accept her it may be free she needs to be left alone for a while now i think. she's had too many drugs, doctors poking at her, blots to look at etc.

Jen

 

[Hound dog]

Jennifer

I don't know what sort of insurance you have or how good it is or isn't. But many of us here have went thru more than our fair share of docs along the way.

So if you can, get another opinion. Yes I know it's frustrating to the point of wanting to scream from a mountain top. But bottom line is that sometimes that is what it takes to get our kids what they need.

Honestly, I've been told over and over again that most psychiatrists aren't comfortable with dxing childhood bipolar. Some don't even believe it can present before adulthood, others the teen years. So it's going to depend on how much experience the doctor seeing her has, as well as how well they've kept up in their field over the years. Some do this better than others.

Personally, I'm one of those who is gonna eliminate any possbility of a physical reason before starting in on the emotional/mental angle. My difficult children had complete exams by neurologist, including EEGs, MRIs. They saw eye docs (MDs). Both had full blood work ups on everything know to science from Thyroid to blood sugar to anemias.

Then we went the other route. Turns out both my difficult children are combo kids. Both physical and mental/emtional disorders that can play off each other and made dxing them difficult until I found docs who knew what they were doing. For me it was a Children's hospital that was associated with a medical school.

For many parents pinpointing the right dxes, finding the right medications and or treatments can be a very long haul. It stinks but that's the way it is. As far as schools go, I figured out from the beginning that the only way they were going to know what they were dealing with is if I taught them and made all docs make up detailed reports on what each diagnosis meant as it pertained to MY child. It helped, some.

And for the record......I've walked away from many docs who I thought had more issues than their patients.

I'm sorry it's so darn frustrating for you right now. been there done that and it's not fun.

(((hugs)))

 

[klmno]

It is frustrating , Jennifer. My difficult child had an MDE at one of the clinics lited in The Bipolar Child, after nearly 2 years of me telling people
"something" drastically changed in my child and asking "if they thought he was a danger to himself or others". It is still frustrating because even though I got the best answer any parent going through this could hope for, it doesn't solve the problem. I guess that hope it gives us and sense of direction hardens our armour though, and made me feel better in some ways. But, we are still at witz end with medications, fighting the sd and legal system, and battling cycling.

I'm sorry you are going through this and want to offer hugs. Prepare yourself though, getting the diagnosis and recommendations doesn't put the solution on your plate. I was told what kind of therapist to get (you wouldn't think it would be that difficult- it is a pretty common type of therapy)- still, I can't find it. It is one thing after another- sd still doesn't (or can't conceive of) viewing this as anything other than "bad behavior".

Sorry, I have probably made you feel worse. I know you don't need discouragement right now. Hang in there- we are all on this board to help each other through it. Put your armour on- hang on tight!!

 

[Fran]

Hi Jennifer. You ae allowed to vent. You frustration is obvious. We have all been there done that.
When my difficult child was in grade/high school, I reminded myself that everyone tried their best to help teach my son and help his behavior. Unfortunately the science isn't where it needs to be. They will do better when they know better. They still haven't been able to teach difficult child some basics for everyday living. Not for lack of trying or caring. It didn't work out though.

Juvenile bipolar is being diagnosed at an alarming rate. I'm sure there is a warning to medical professionals about waiting until they are sure before making this diagnosis.

Hopefully, you and your child will get the honest integrity and help that the professionals showed my difficult child some time ago. Doesn't mean I wasn't frustrated with the limitations of our current education and medical knowledge.

Hang in there. It's a long rough road. Pace yourself.

 

[Jena]

hi guys

i think my frustration level as difficult child is up yet another night rihgt now even on chlonidine is the school staff not the dr. at hospital. the staff teacher school psychiatric said they did not see the mania in school.

yet they do. the teacher even said it's strange she functions better on the days you said she had no sleep. i said to the teacher that is mania right there plain and simple. they were silent.

i said the week that she was great academically and socially did a presentation in school then the next week was anxiety ridden withdrawn and depressed that was the low of it, do you see what i mean? once again they fell silent.

it's not just depression. she exhibits so many different behaviors due to this and the anxiety disorder that it's often hard to keep track of it as many of you know.

i think what im going to do is go up to school in the a.m. and have a word with the school pyschologist and have them call dr. at hospital and tell them what they really see. then i'm calling doctor myself as well i paid her a fortune she should be able to take a call.

my fear is if not properly diagnosed at this point she will only get worse and that seems to be happening before my eyes. she's at critical piont of depression said the doctor at hospital critical. ok and therapy is supposed to help that?? then i said hey wait what about the days wehn she's pink and blue and flying on a cloud?? i've seen those time and time again.

i've been having such a hard time with me as of late with my mental stuff new diagnosis and now the medical stuff i've been experiencing it's been so difficult.

i just know the swings i've been seeing just aren't right i know we moved i get she is thrown and probably upset but not to this extent not for this amt of time. i've seen the withdrawn behavior as early as 3 and it seems to get progressively worse with each year. and the swings are insane. she's up she's down she's insecure she's depressed she's happy and jumping on chairs at dinnertime i can't control her she's crying before bed she's up in the middle of the night.

it makes me sick to see what she goes through. i'm sorry i am really venting here i just need to i haven't been around much lately been so busy doing...

thanks
Jen

 

[Jena]

and none of you made me feel worse without all of you to be very honest i wouldn't be as far along as i am right now. i never knew to go get a neuro psychiatric evaluation. thank u. did the neurologist but never thought of the other kinda didnt' know it existed.

 

[totoro]

You know Jennifer I just wanted to chime in and say I am with you!!! I am heading off to clean up... K has been very manic all weekend. So I am with you on the stress!
I was thinking about you, K is off of all medications, but when she was on medications, we were using Clonidine PRN, I don't like to use it that much especially at night anymore, because I have found it will either knock her out, calm her down... which is good!!!
But, she comes out of it worse... she will either wake up in the middle of the night with increased agitation, or during the day her calm will wear off and she will be back to manic!
It is just not a good PRN for her. It is like I would have to keep giving it to her or increasing it. Just a thought??? Ativan/Lorizapam was not good for her either... made her Hallucinate and even more Manic!!!
Sorry...

 

[Marguerite]

Jen, I'm thinking - instead of you calling the doctor at the hospital, why not put it in writing? A phone call from a frustrated parent can be easily dismissed and discounted, but a carefully worded letter can make your point much more clearly and effectively. it also should stay on difficult child's file, so someone at a later stage might see it and get your message, even if this doctor still doesn't after reading your letter.

If you simply ring up and talk, much as you have vented here, I doubt she'll pay you much attention. I can hear your frustration and know where you're coming from, but you would have to moderate it a great deal or you would 'turn off' the doctor and she just wouldn't listen to you.

A letter written more formally can help you sequence your thoughts more easily, making the case more effectively.

You could say,
"Dear Dr G. I am still confused as to why you feel difficult child has depression, rather than bipolar. As I understand from what you explained, you feel that bipolar doesn't apply because [list the reasons she gave; try to get it right]. However, after talking to the school and discussing their observations with them, I need to make it clear that she could well be cycling, within the framework of their observations. For example, [describe the sleeping thing]. Also [mention the moods changing from one week to the next and make it clear that you cannot find any external factors to account for this occurring]. This seems to be a pattern repeated every [mention the periodicity].

I am also concerned that on some nights she isn't sleeping despite taking Ativan, and yet is reported to be functioning not only adequately next day, but extremely well as if not tired at all.

I am aware that biploar in children is difficult to diagnose and that concerns have been expressed that it is diagnosed too readily. However, I am concerned that if my child is suffering from more than depression (and I still have reservations about depression being a constant factor at all) then she may be missing out on treatment or therapy which could help her learn sooner to manage her condition, whatever it is.

Could you please confirm for me whether we should continue to keep an open mind on this issue, with a view to perhaps reconsidering this after more observations have been made?

Thank you for your consideration."

Please do not use my exact wording, I only threw this together as a guide for you. The letter needs to seem as if you wrote it, but if you use a sort of framework like this, you might get somewhere - if not now, then maybe later.

This approach has worked well for me in the past. And if you are concerned that a letter takes too long and a phone call is quicker, bear in mind that these days with fax and email, the written word can be VERY immediate.

Here's hoping that one way or another, you get the answers you need. In other words, if difficult child IS suffering from depression that the doctor can explain why this is correct; or if difficult child really DOES have bipolar, the doctor can see this and amend the diagnosis.

Marg

 

[tammyjh]

Hi Jen,
I've been stewing over similar issues since Wednesday. I understand your frustration fully. We're gearing up for a break from dealing with the mental health "Professionals" and probably giving neurology another try or at least see if we can find someone who's at least interested in reviewing her charts and answering a few questions if they can.
Vent as often as you need to.

 

[BusynMember]

As one whose child was diagnosed with bipolar and didn't have it (although I can see why the Psychiatrist thought he did at the time) I'm with Fran. Doctors are probably going slowly with this diagnosis. as it is suddenly very popular and it is not always right. Even the best psychiatrist can be wrong.
I'd want to look at everything too, and for that I'd want a NeuroPsychologist as well as another Psychiatrist. More than one thing can be going on...or something you haven't thought of yet. All the childhood disorders tend to overlap with symptoms, so it can be hard to nail it. In hindsight, I wish I'd had more patience and had taken him to Neuropsychs before I loaded him up on bipolar medications.
If bipolar is in your family, the chances that your child has bipolar is higher, however there are other things that tend to go along with bipolar too. I wish you luck...I know--TRUST me I know...how hard it is and how frustrating.