Been there done that....

[timer lady]

I recently read an article published by the Child Trauma Institute. There was a statement in the article that stated that for effective treatment of a child the therapist needs to treat the parent as a co-therapist; to recognize a parent’s knowledge of their child & research done on their child’s behalf.

Having said that, I’m reminded of all the conflict many of the CD board parents seem to have working with their child’s current psychiatrist, therapist & even the current diagnosis.

While there have been cases of misdiagnosis, our children are a lifelong journey. With age & maturity the many diagnosis’s will be changed, modified or ruled out according to your child’s presenting symptoms.

Our children were placed with us almost 7 years ago. Hard to believe how the time has passed. I remember being rather innocent when dealing with all the medical professionals; being very defensive or reactive to the suggestions or medications & recommendations for treatment.

As my children have matured I have matured. The science of the brain, mental illness & emotional issues is more of a crapshoot, than a science.

I got to the point where I could no longer continue to hop from one doctor to the next because I vehemently reacted to a diagnosis or to a treatment plan placed before me. I had to, for my children’s sake, take a hard look at what these very educated individuals were telling me & begin a respectful & informed dialogue.

So, what started out as a somewhat volatile relationship with our current psychiatrist has turned into a partnership; mutual respect, hearing one another out. We began to see ourselves not as doctor/parent but as a team looking out for the best interests of my children.

I have to say that we have the same relationship with our current therapists for my children.

This all took time; my ability to stop and listen with an open mind grew. The professionals working with me on my children’s behalf have learned to “hear” what I am saying & respect my concerns. They have acknowledged that no one knows my children better than I do – no one else will advocate for my children with more passion than me. I, alone, am the person who has my child’s best interest as my highest priority.

It took three and a half long years to pull our core treatment team onto the same page. While that was a work in progress, my children continued treatment; continued to evolve to other diagnosis’s & treatment issues.

All that being said, I would recommend if you are struggling with a current diagnosis, medication, psychiatrist, therapist, etc. that you sit down & open an honest dialogue with the people you currently have employed to help your child.

At some point, you have to stop searching for the “perfect” diagnosis or medication & start working on the treatment plan; coping skills, life skills, academic progress, etc. For many of our children there will never be one diagnosis or medication that will fix the problem.

If you cannot come to some sort of mutual & respectful agreement, then ask for a referral. You know, as I do, how exhausting all of this “starting over” with a new psychiatrist, therapist & whatnot is. It tends puts all treatment options on hold until everything is reassessed.

Just something to consider on this very chilly morning.

 

[DammitJanet]

Linda you are a very wise woman.

 

[transformtriumph]

Parents need to remember that they are the experts on their child. They can listen to and use the information given to them by professionals but parents are the experts. They should always be treated with respect.

 

[Martie]

Linda,

I could not agree more. I still greatly resent the professionals who discredited my knowledge of ex-difficult child and absolutely knew they were "right." I know I should "get over it" but it is hard, principally because I know it still is happening to many others.

Equally galling to me are the people who "always" knew my ex-difficult child's talent would pull him through. Who do they think they are kidding--he could have just as easily crashed in a haze of drug abuse and/or suicide. If they always "knew" he would be OK (clairvoyance??), then that discredits all the hard decisions I made.

Thank you for your very wise post.

Martie

 

[busywend]

:bravo: :bravo: :bravo: :bravo:

Well said! And good advice!

 

[dreamer]

I keep re reading this....I keep trying to figure out how it relates to me. Or if it does. Maybe it doesn't.

I do know when I first began our journey into all of this kind of stuff....18 years ago.....there was a lot less innformation available to the docs, yes, that is very very true.
I was innocent, naive and trusting.
I believed our professionals, and trusted them. I did every single thing they told me to do. I was grateful for their professional knowledge.

But slowly things got worse instead of better. But when I complained, I was told things had to be getting worse because I could not be doing what I had been told to do, otherwise things would get better.
SO, I thought gosh maybe I misunderstood. ANd I confirmed and clarified instructions. ANd I was doing exactly as told. ANd nope, things were still getting worse. SO then I had to "prove" I was following orders correctly.....to in home people, and to state and county authrorities.
ANd still things got evenmore worse. ANd while the in home people and state and county authrorities kept me under a microscope, they made sure I did as told. and still things got worse.
I was accused of MUnchausen by proxy. I was accused of stealing my kids medications, nevermind eventually in home workers administered my kids medications directly.
Nevermind for approx 5 years I was hardly alone at all with my kids, had every kind of in home help imaginable. Overseeing every single breathe everyone of us in this family did. Things still continued to get worse.
By then I had gone thru nursing school, by then I was also working for the county and worked in an Dementia/ALzheimers unit. I started paying closer attention to various medications and reactions to medications etc.
By then I started talking to other people with loved ones also diagnosis'ed with mental illnesses.
When our school called 9-1-1 on our oldest before calling us, and crisis intervention said our psychiatrist would not respond to pages they put in from school I REALLY started to wonder.
When my dtr was inpatient in psychiatric hospital and her psychiatrist STILL refused calls...even from psychiatric hospital- I knew we had a MAJOR problem.

I began to make arrangements to change docs. I went to a univ hospital in city and found a new doctor, and set an appointment. when dtr was discharged from psychiatric hospital- I had a pile of letters from all the caregivers that had been in place up till that time. Ironically, while she was inpatient in psychiatric hospital, all her care providers had met and "successfully graduated her out of the system"
Yeah, OK.
Alas, her local psychiatrist called a month or so later to ask why we had not been calling for more appts. I said we have a new psychiatrist. Next thing we had CP at our door, our old psychiatrist called CPS and cited medicalnegligence.
Well, we did have a new psychiatrist and were able to provide cps with documentation.
Not long after our kids school decided to demand a docs note for something......and when the note came from a doctor in the city, the school called cps, too, also for medicalnegligence, saying gosh noone goes to the city for a doctor, thats 3 hours away. again we had to prove we really did have a doctor theree.

I did everything in my power to work with the old care providers. The psychiatrist, therapist, multitude of therapies, WRAP, SASS mentors, respite, etc etc. They were a package deal here. ANd I put my trust in them and worked hard to work WITH them.
In fairness to them I do now know they did not know. BUT they also did everything in their power to discredit me to protect their own egos. The y put my child in danger to cover their own behind.
I later found out they also manipulated files charts and records.

They never believed me when I said yes I am giving my child her ritalin exactly as Rx'ed. When at age 8 she began to try to cut her wrists they accused me of witholding her Paxil. When at 10 she did not sleep for 4 days, they accused me of not giving her her zoloft. They also suggested maybe she was using recreational drugs.
I found out from the records I later got, they assumed I was using recreational drugs, as well, and stealing her drugs, too.
I was not and never did do either.

I trusted our professionals. I believed in them. I tried so hard to work with them and to be a part of The Team.

I remember sitting in countless staffings where our "professionals" argued with each other. No, they were NOT discussions, they were not debates.
Sadly at that time, in our area, there was not anywhere else to get mentalhealth care locally.


SO when I first read this thread, I was not quite clear on what it was about. But I do want to make sure that parents do not just think they are doing someething wrong if things are not working out. If things are not working out it does not necessarily mean YOU were not a Team PLayer. It might mean your professionals aren't.

It is ok to disagree with a diagnosis, it is ok to disagree with a professional. Mental Health is still in it's infancy. Most of the treatments are new- that is-not have ben in place all that long. Heck, acknowledging things such as BiPolar (BP) in children is new in my childs lifetime in many geopgraphical areas. When she was 3 I said time and again, look, she IS bipolar, (EXTENSIVE history all over both sides of family tree) but alas, I was told time and time again, no children cannot be bipolar, you must be 16 or 18 to be bipolar.
Psychiatry is a "soft science" so far there are no concrete objective tests for things like ADD, ADHD, Bipolar, etc. diagnosis is based on observation. Sadly in all other science you need much more concrete tangible solid evidence. These illnesses and disorders are subject to interpretation. Interpretation can vary.
Many of the medications being used are relatively new. Most have not been tested in children, growing bodies, developing brains.
Many of the other therapies are also new- or new in use for kids.
SOme of the first kids who trialed these drugs and therapies are only just now coming into adulthood.
It is us who is setting precedant, us who are the Frontiersmen.
Yes the single most important quality to have in a psychiatrist is for that psychiatrist to actively and intently listen and hear us. Whether we like it or not we are the guinea pigs. and whether our docs will admit it or not, it is all still so much guesswork.

And yes I have been saying since I came here.....you are the expert upon which the psychiatrist needs to be able to trust to relay accurate observations. If your doctor does not want to heed your observations, you need to seek one who will.
As in any other profession, there are good and bad docs, therapists, social workers etc. They are after all, human beings, and can have the same flaws as the rest of us can have. But the single most important skill they have is to listen to us and our kids. If they do not LISTEN then how the heck do they even know what the problem is?

 

[BTDT]

Timer Lady,

Can't say it any better than Janet. Very wise. Sure worked for me. And that's what I always recommend as long as parents have a good therapist on board. 'Cause it's hard to know how to advise others until you've...

been there done that

 

[Marguerite]

I've always said - where possible, work with the doctor you have. Work as a team. If you disagree, discuss it. Try to work it out.

If after a lot of effort you still feel there is no chance of a useful working relationship and viable treatment, then move on. If at a later stage you get what you were looking for - something that works in a professional relationship to the patient's benefit - then feed that back to the first doctor so they know you weren't just another doctor-hopping patient.

Continuity of care is most important, for a number of reasons:

1) It makes it easier to recognise and learn from long-term patterns;

2) Ongoing issues can be better monitored with a long-term history (ie blood tests being abnormal here or there), making it easier to test and eventually discover a possible cause for sub-issues, at least

3) It shows you are prepared to face unpleasant suggestions and at least consider them, rather than always walk away when someone offends you.

4) A patient who shops around constantly can risk being labelled as Munchhausen's. A parent who shops around and gets this label can lose their kids. I've seen it happen.

A woman I knew had a daughter with a 'mystery illness'. She was a member of an organisation which had people with similar health problems, an illness that was still considered by some doctors to be imaginary. The mother became focussed on 'proving' her daughter was genuinely physically ill. She had the best specialist in the world (according to most opinions). I had the same specialist. Then the specialist began suggesting to his patients that we be assessed by a psychiatrist to determine any possible problems due to being ill long-term. I wasn't happy with this but agreed. I disagreed and argue with the psychiatrists but they fairly soon left me alone - any problems I had were under my control, there was nothing requiring their services. But this mother - she withdrew her daughter from this specialist loudly, in protest. "How dare you doubt my daughter!"
The problem was, because this specialist was such a trend-setter, all other similar specialists began introducing psychiatric assessment as part of their work-up. The mother was dragging her daughter from one doctor to the next, until she found one who would not insist on her daughter seeing a psychiatrist.

Finally, after ongoing problems which were hard to assess because the medical records were not passed on (the mother refused to bring records from past doctors, because in her view the past doctors were all completely wrong) the girl was in hospital. By this stage I had also been cut off from contact and information, so all I know is what I have been able to glean from others - the girl was in hospital, very thin and weak. She was on IV fluids for nourishment and hydration. The hospital requested a psychiatric evaluation. The mother had the girl discharged. The girl later died at home (under medical care of sorts). The mother ordered an autopsy at her late daughter's request. The autopsy would have proved, she believed, that this was a physical problem. However, I was never able to discover the results. I believe, with all the poor girl went through, they could well have been inconclusive. In the same way that long-term physical illness WILL cause some level of psychiatric dysfunction, long-term physical illness also leaves its own physical ravages which can mask an original, subtle cause. Who knows?

The girl could well have died anyway - I'm not saying she died because her mother dragged her from pillar to post. But I believe she would have had a better chance if they could have let the shrinks see her and then having realised she WAS physically ill but coping emotionally, leave her to be perhaps more appropriately managed by the same long-term specialist.

Another example (sorry) - difficult child 1's first pediatrician diagnosed him as ADHD when he was 6. He was helpful, he even came out to the school and talked to the staff about difficult child 1's needs and about ADHD in general. But then he began to change. he began to make appointments with me, said I didn't need to bring difficult child 1 (who WAS the patient, after all) and began to be very interested in my mental health (interestingly, at the same time as my specialist wanted me to be checked over by a shrink). So, with pressure on all sides from MY doctors, I saw the psychiatrists. When I went back to the pediatrician who was STILL harping on about my mental health, I told him the results - "They said I had depression in the past but had dealt with it appropriately and it is not currently a problem."
His reply - "Wow, you must be really mentally sick, if you could fool them that well."
The pediatrician had also begun to insist I see him alone. One day I had made an appointment on one of husband's rare days off, as he IS the child's father! As soon as the doctor realised husband would be there too, he cancelled the appointment.

I worked at that parent-of-patient/doctor relationship but it became increasingly bizarre and inappropriate, so I made a clear break and moved on, making sure I told the new doctor as much as I could and also asking for the case notes to be forwarded. I knew the notes would have some bizarre things about me but I did my best to explain to the new doctor a bit of the history. Fortunately, the old doctor had a history of his own and an increasingly shady reputation. The new doctor took me on my own merits and made up his own mind.

So while you should TRY and stay with the same doctor even if you fight occasionally, sometimes you HAVE to move on. The thing is, you try, you make an effort then you make a considered judgement. You then assess, after the fact, the outcome on your child - did I make a mistake after all? Should we go back? or are things much, much better?

We each have our own situation to work with. But you guys here help stiffen my spine. Thanks.

Marg

 

[Wiped Out]

Linda,
Well said! :bravo:

 

[timer lady]

This thread was not intended or pointed at any one member. Rather it was sharing of the culmination; the process that continues to evolve for my tweedles.

I have been in a fragile place many times, questioning diagnosis's & medications. Arguing & seemingly "unstable" looking to the professionals with whom I was working.

That wasn't going to work - I couldn't argue everything; I couldn't present as an out of control parent - living life on the edge, even though that was where I was at one point.

I pushed for respect; demanded accountability from the professionals working with my children. I did the same in return.

I thought maybe others could learn (not quite so painfully) as I did by sharing with you.

 

[dreamer]

Marg, I know what you mean. And yes, I understand. SOme of us might go off in search of a doctor who will validate us no matter what we are thinking or whatever.....

Yes, timerlady, the advice CAN be good....it is true. ALtho there is the flip side, which is the side some of us were also pointing out.

Funny, I got accused of Munchausens even when I was not doctor hopping. ANd yeah, me and husband both were ordered in for our own evaluations BEFORE anyone would even SEE my kid. It really is sad.
ANd then my son, frombirth there were concerns due to medications I took while pregnant and complications I had during the preg and then him being born 2 months early and having a prolonged labor, but- those concerns were dismissed time and time again by the pediatrician, the psychiatrist, the agency where we recieved our health care. ANd sadly, not exactly typical "behavior symptoms"-----but rather, inability to toilet train, inability to ride a bike, inability to control a playball, inability to focus eyes, his pediatrician dismissed as mom seeking perfection in her only male child and last child. Dismissed by psychiatrists, tdocs and all in home agencies - sometimes psychiatrist accusing me of not working with him to teach him, but then later after the in home workers also could not teach him, then, the blame fell on my son haveing an behavior disorder- that if he WANTED to toilet train he WOULD etc. Had I NOT doctor hopped and jumped authority-----he would not have had the MRI that found his brain issues at all, and they would prolly STILL be shoving stims in his face..even tho they made his seizures that they also misdiagnosed worse and made him quite ill.

BUT becuz the psychiatrist here local treated us SO shabby and called CPS when we changed docs, it was scary and difficult to move forward and get the proper diagnosis and treatment and care.

It is very important to keep an open mind, educate yourself and follow your gut and your heart. It is not always the patients fault when things do not go well. But I also admit, it is also not always the professionals fault, either.

Over the many years I have had to face up to facts that my husband is going to continually mentally worsen. That is what happens with his diagnosis. medications are not magically going to make it "all better" Behavior mod took us so far but could not make it ALL go away......As time goes on my husband will continue to become more and more my most difficult difficult child.
I was frantic my oldest would not be able to function. SHe is not marching to the same beat as the majority of the world. Sadly medications made her march even more strangely. We are not even going to go there- suffice it to say about the ONLY medication NOT trialed was prolly Focalin and Risperdal. 15 years of medication trials and not one single week of anything even closely resembling stability. In the end, she has done better than any other time on no medications at all. I read here daily how Bipolars MUST be medicated. Well, I have not been medicated in 11 years at my docs choice and my oldest has been medication free approx 2 years. There is little doubt in my mind both her and I ARE bipolar.....but there is little doubt in the minds of the professionals caring for her and I and the people around us that we are doing better this way. No- I amnot advocating others do this-----I AM saying....flexibility. Keep an open mind. Follow YOUR gut and YOUR heart.
Yes her and I do cycle....BUT surprising, I can look around and see so many many other people all over the place EVERYWHERE........who could easily be "sicker" than her or I who DO find a way to live life.

Do not run from a doctor just cuz you do not like the diagnosis......but do not stay just cuz ge they are the doctor, they must know.....

 

[Stella Johnson]

been there done that,
Why don't you tell us your story? You seem to be very comfortable with giving us advice... what is the story with your difficult child? You still don't have a profile on here.

Steph

 

[amy4129]

Linda-
Thank you. Sometimes I still feel like it is very easy for me to fall into the treadmill phase. I liked hearing that others have been there and it is just not me.
I've been feeling fragile and overwhelmed lately so your words spoke to my Mommy heart.
Amy

 

[TerryJ2]

Wow, Linda and Dreamy, two completely different stories! I'm still absorbing all this.
Wow.