Re: How much therapy before adding meds?/

December 2, 2008

Hi ,

I had to respond to your post, especially seeing you are an ER

doctor . We did have to go the hospital/ER route more than once, and

I agree with your assessment of this. Even being admitted, three

week stay, necessary because of circumstances, psychosis plus. But I

have to say it was probably one of the most damaging experiences for

our whole family.

This disorder is so poorly understood, even by professionals who have

knowledge of it, but who, as in our case, lack experience. They say

and do such unhelpful things sometimes. The one thing it did for us

was put us in line to go to a more specialized hospital, where they

could make things even worse.... Sorry to be so negative, still

haven't figured out how to reach some resolution on all this, mostly

because I cannot accept what is so unacceptable.

Any suggestions on how to really make a difference on this? Who

would I contact within the hospital system, or other??? I think I

might have reached a place where I could have a civilized

conversation about this, but not sure who to start with, or where or

with whom to start advocating for changes to our system. Any

thoughts appreciated.

I should close by saying our son is doing much better now, pretty

much once we stopped seeing doctors... To be fair the doctors were

all good people doing their best, but the approach and lack of

resources/experience seriously limited potential results.

Thanks for any thoughts.

Barb

>

> About the codine / surgery- any stressor will still set my son off-

a cold, over tired, bad day at school- usually resolves once the

stressor is over at this point. If it is just obsessions I might

wait it out before going to the ER. This is often a bad option

unless you feel he is unsafe ( This coming from an ER doctor), or is

being violent and you cant control. Even if you start meds, they are

unlikely to work for several months, so an ER visit is not likely to

change anything, and may add stress. If you do go to the ER, I prey

you get what you want from it and it is not a bad experience.

Personally, I have never done it cause I think it would send my kid

over the edge, but everyone is different. Good luck, you will be in

my prayers.

>

December 3, 2008

Unfortunately, I think the answer to the question/the solution is rather

complex. Being on both sides ( mother of now 12 year old boy dx with severe OCD

at age 3 AND being an ER doctor) I see both sides of the problem. I will say

that the people I have taken care of with kids with OCD in the eR have said I

was their guardian angel percisely because I understand...No words need to be

shared about what they are going through etc. I can look at the problem and

decide if the kid is REALLY in danger, or if the family is at their wits end and

does not know where to turn ( not hard to understand how that could happen).

The people you call after hours tell you to go to the eR because it is the

after hours catch all. We can handle anything- and we will- just not

necessarily with the child's best interest in mind in the long term. My job as

an ER doctor is to keep people safe- and I can do that at all costs if I feel

the person's life is in danger. My job as a parent of a child with OCD is to do

the least harmful thing in the long run, to try to help my child preserve

whatever shred of rational thinking and control they have left in that moment-

to help give them power over their disease, to help them learn to be better,

stronger people in the long run and to become a better person and parent BECAUSE

of it not in spite of it.

These two roles clash when you get to an ER.You as a parent know your child

best, but if they are raging or saying they are going to kill themselves, it is

the job of the doctor to keep them " safe " - this means physically safe, not

emotionally safe. SO.....We tie them down, committ them against their or the

parents will if we feel they are " unsafe " . Well, what is unsafe? I know my

kid has threatened to kill himself, has sat out in the middle of a road, has

climed to the top of a roof and threatened to fling himself off, has swum out

into a large lake and just kept going. If I had taken him to the eR for these

things I hate to think what would have happened. I retrieved him from these

dangerous positions and kept a better eye on him and made med changes with

advise from psyc from home, because he was a little kid and I knew I could keep

him safe.

If I were the ER doctor seeing someone with similar, I would try to tease out

what the problem is, if the family felt they could keep the child safe etc, but

that is ONLY because I have been there- not because of my medical training.

Far and away most families arrive at the ER with their psychiatricly sick

children not because the children are unsafe but because the family is stressed

and doesn't know where else to turn- they have called their doctor and been

given these instructions. But it is really the wrong care facility for an

anxious child ( imagine the GERMS!!!!) ER's are really set up to take are of

medically ill people. ER doctors are trained in the acute management of medical

illness. If someone is out of control behaviorly, we either tie them down or

medicate them because we are busy and need to be sure they are safe. These kids

look CRAZY when they are really bad. Only the family or someone who has delt

with OCDknows that they are not crazy, that inside this raging monster is a

lovely bright eyed smart functional child who is being held hostage, but still

obsrves and feels everything that is going on in the framework of reality.

Unlike someone with psychosis, they understand that their ideas and thoughts

dont make sense- they may not want to admit it or may be too much in a rage to

even talk about it, but they are still in there, watching and knowing. But the

doctor cant know that unless they spend a lot of time with you talking. And

most ER's are so busy these days that the doctor does not have time to do that.

So, what's the solution? I think education of the parents in the early stages

of the diagnosis ( not during crisis) about what emergency plans are avilable,

what the ER is and is not capable of doing, and what that experience is likely

to be like. I have as part of my son's 504 plan at school thay they DO NOT call

the pediatric crisis team if he freaks out, because I do NOT want them involved.

I know I am better able to sort it out, handle it, and talk him down then anyone

who does not know him. Have a plan, know the resources available. Talk to your

doctor during day time, maybe have an emergency supply of ativan or valium or

something to get you through the night ( kind of like if someone has a history

of asthema they always have an inhaller available- just in case).

I also think as parents we need to take a really close look at whatis driving

the need to go somewhere like an ER. Is it really because your kid is unsafe or

is it that you as a parent or as a family has had it? You are tired and

frightened and sick of seeing your kid suffer, and don't know what to do. If

this is the reason you are thinking about the ER my advice is STAY AWAY!!!!!!

You are unlikeyl to be satisfied with your visit or the solutions. The only

reason I would do it is if I were honestly feeling I was unable to keep my kid

safe.Don't get me wrong, I am not judging anyone for being overwhelmed- I have

been there more times than I can count- I just dont think the ER is likely to

improve that situation and you will end up walking away feeling worse thatn you

did when you went.

I think better access to true pediatric mental health providers and a lot of pre

planning is a start. Plan for disaster- have contingency plans. Know what

resources are available in your area. If you are traveling with a sick child,

know what resources are available where you are going. The only place I would

take my kid would be a specialized pediatric psychiatric hospital unless he were

about to kill himself and I couldn't stop him. We do not have anything like

this in my area, and I doubt most of you do. I live in Burlington VT and it is

hard to find even a pediatric psyc doctor who is worth their weight, no less a

therapist who knows what CBT/ERP is. I had to train our psycholgist in it.

Then try finding someone who works with a 3 year old!!!! Impossible.

The bottom like is there needs to be a system change with better mental health

access ( yeah right) , but until then I think the answer is standing up and

advocating strongly for your child, what is best for them and your needs. If

you are overwhelmed, get help for yourself as well as your child. Closely

examine what it is you are wanting and needing and ask for it directly. Use

your resources wisely as parents. If you do go to the ER , try to teach the

staff. Get involved in public education about OCD- give lectures at the school-

Talk to the ER director about how you would have liked to see the situation

handled and what you could do to educate the staff about dealing with an OCD

crisis. If the ER will be your option in the future, try to set up a care plan

for your child. A care plan is kind of like a hospital 504 or IEP- it is a list

of things that will and will not be done that is agreed on ahead of time. The

key is not trying to deal with all this when YOU are in crisis- cause you cant

think, you are exhausted, etc.

Also, if you have a medical school in your area, talk to the director of medical

education about if there are any oportunities to talk to the medical students

about the experience of having a mentally ill child- trying to give them the

human, emotional side- not just the medical side- because that will make things

better in the future. The problem is not the medical understanding of the

disease. The problem is the lack of empathy, and really understanding. The

closest I ever came to killing someone was when my kids psychiatrist said to me

" the hardest part of all this will be helping you to figure out what it is you

have against putting your kid on meds " ( he was 3 at the time)- like I needed

psychotherapy to figure out why I was concerned about beginning meds that we

have no idea the safety of in a 3 year old- and in fact the only data we have is

that they increase the risk of suicide. He had noconcept of- nor was he

intrested in the daily struggles both physical and emotional of just getting

through one hour, one day, not knowing what the right thing, the safest thing to

do is and having your child's life at stake. He did not want to hear about the

dispair and grief associated with watching your beautiful child be ripped away

from you by a monster that you cant see. He did not want to hear about the

social implications and the people saying you are a bad parent and that is why

your kid is like this. He did not want to hear that those were the hardest

parts- He just thaought I was nuts because I had a healthy dose of scetasism

about starting meds in a 3 year old! Long answer to your question- sorry- i

hope you found something helpful in all my rambling

December 3, 2008

Wow! Thank you for your input! This was really helpful to me! Fortunately we

have not yet been faced with a situation so overwhelming that we have considered

the ER for OCD. If that occurs in the future, however, I will really think

twice about it!

Thanks for sharing your experience as an ER doc and as the parent of a child

with OCD!

Beth

Re: How much therapy before adding meds?/

Unfortunately, I think the answer to the question/the solution is rather

complex. Being on both sides ( mother of now 12 year old boy dx with severe OCD

at age 3 AND being an ER doctor) I see both sides of the problem. I will say

that the people I have taken care of with kids with OCD in the eR have said I

was their guardian angel percisely because I understand...No words need to be

shared about what they are going through etc. I can look at the problem and

decide if the kid is REALLY in danger, or if the family is at their wits end and

does not know where to turn ( not hard to understand how that could happen). The

people you call after hours tell you to go to the eR because it is the after

hours catch all. We can handle anything- and we will- just not necessarily with

the child's best interest in mind in the long term. My job as an ER doctor is to

keep people safe- and I can do that at all costs if I feel the person's life is

in danger. My job a s a parent of a child with OCD is to do the least harmful

thing in the long run, to try to help my child preserve whatever shred of

rational thinking and control they have left in that moment- to help give them

power over their disease, to help them learn to be better, stronger people in

the long run and to become a better person and parent BECAUSE of it not in spite

of it.

These two roles clash when you get to an ER.You as a parent know your child

best, but if they are raging or saying they are going to kill themselves, it is

the job of the doctor to keep them " safe " - this means physically safe, not

emotionally safe. SO.....We tie them down, committ them against their or the

parents will if we feel they are " unsafe " . Well, what is unsafe? I know my kid

has threatened to kill himself, has sat out in the middle of a road, has climed

to the top of a roof and threatened to fling himself off, has swum out into a

large lake and just kept going. If I had taken him to the eR for these things I

hate to think what would have happened. I retrieved him from these dangerous

positions and kept a better eye on him and made med changes with advise from

psyc from home, because he was a little kid and I knew I could keep him safe.