Need Advice, Please

[Guest guest]

a, hi.

Go very prepared for your review at the hospital! Bring in a file of

references colleced from our website,

. ,or the OCF's website, that

deal with the treatment of children with OCD.

How to treat OCD: http://www.ocfoundation.org/ocf1030a.htm

OCD in Children: http://www.ocfoundation.org/ocf1040a.htm

OCD Medications for Children: http://www.ocfoundation.org/ocf1060a.htm

IF they refuse to supply the CBT, ask for that in writing! In fact, its a

good idea to bring an advocate with you. I'm not sure what the equivalent of

the Canadian Mental Health Association is, but there must be one!! Contact

them ASAP and ask them for support, it is most likely part of their mandate.

If you cant find someone on such short notice, ask them for ideas - or

bring along someone who can take notes for you. You want to present yourself

as an educated consumer of the services you wish to have provided, so keep

things professional as much as you can. Its hard not to get emotional, but

try to think and speak as logically as you are able. Sometimes having the

quieter parent do the talking can help. Rehearse what you want to

communicate.

Many facilities have excellent reputations - but that is in the fields

they know best. Obviously from your post, treating ocd in children is new to

them. Or I should say: Treating children with ocd with therapy, VS meds, is

a new concept for them. (BTW, this is the situation in my city). IF you can

get a copy of the Expert Consensus Guidelines for Treating OCD make sure you

take it with you!

If for some reason you end up with social services intervention, try and

make them work FOR you. Keep on them about providing care that is the best

interest of the child. Remind them that treating the family is not treating

the cause of the distress... so going to the root is where they want to

start. Social workers are supposed to be trained in a variety of skills,

make the worker " work " for you! Convince the social worker to advocate for

you for improved services!

I hope this helps. Let us know how things go....

wendy in canada

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

HI a:

Happy New Year from another mom wrongfully accused and written up in the

State Department of Health notes for Steve's case as a Munchausen's

by-proxy syndrome mom! I have left it in his file just to keep the mental

professionals humble!! It is very hard for anyone to take this dx

seriously given the dramatic improvement in Steve's severe OCD and our open

celebration of his recovery. It is my badge of honor for prevailing

despite a cruel disorder and more than lack of support by some mental

health " professionals " .

We have also had a lot of family therapy, both voluntary at $200 US per

hour, and as encouraged by other mental health professionals. OUr

experience of this was not all bad. We did learn to function optimally as

a family in the face of merciless and unrelenting severe OCD, but it did

very little to address the root problem of our individual and collective

dysfunction, OCD. Supportive therapy for the family, which is not blaming,

but comes from a place of understanding OCD can be helpful, particularly if

it includes valuable tips on doing co-therapy with E & RP.

Family therapy is certainly not first line treatment for OCD. I believe

that psycho-education of the family is very important to help us facilitate

the recovery of our ill family member. However, family therapy, unless

family members are needing therapy on their own account, is only an adjunct.

YOu are asking an excellent and very tricky question here. Navigating

through the health care systems can be fraught with difficulty.

What helps me is to tell myself that everyone is doing their best.

Unfortunately some people's best is downright harmful, but this is out of

ignorance not deliberate. This calms me down enough to cope. I'm afraid I

am not very good at helping docs/therapists at saving face about not

knowing their field enough to help my child. IF they do not respond after

I have provided peer-reviewed evidence of the best, evidence-based medical

practice for my child, then I just move on. I have learned the hard way

that to continue was a waste of my time and hopes.

When you have to work within a system of care that has hoops and dead-ends

you need to understand the workings of the system and who is responsible

for quality assurance. When I was living in London and part of the British

medical system I had a roommate who was being overmedicated by a doc. I

called him up and told him about my roommates overdosing and suicide

attempts, and the other meds she was on and asked him to resign as her doc.

THen I called her sister to get her help to find competent care.

Here I have called the quality assurance manager and detailed my concerns

and my request for action. Someone is always worried about publicity,

although it can be hard in a small town to get the paper to do anything

controversial. When my husband and I wrote an op ed piece on children's

mental health care in our community the newspaper editor called us and

asked what our occupations are, etc. etc.

I keep a good written record of events and send some confirmation letters

about treatment twists and turns, always polite and respectful. My letters

outline the facts, and focus on specific remedies rather than sound off

about my frustration. That I save for understanding friends. I try to

write as if I am a third party, not emotionally entangled in the outcome,

however I do not hesitate to personalize things in a positive way. Some

people will help you, even if only from pity.

A wonderful source of help to me has been other parents of kids with NBDs.

One told me to keep my son out of the hospital system. She had used it

extensively for her child and never got reasonable nor effective help. IN

fact she had to hire a doctor privately to come to the hospital to treat

her daughter's OCD with CBT! Another mom taught me how the care system

works and what the roadblocks would be. So I was ready for resistance and

ignorance when I met it and not deflected from my purpose, to get help for

Steve. Without their help I hate to think how our family would be doing.

Have you contacted Obsessive Action in England? Another resource I learned

about today is http://www.anxietycare.org.uk/. London is the home of E & RP

so I am sure you can access some good help with the assistance and

encouragement of others who have gone before you on this journey. Good

luck, please keep us posted about progress. Take care, aloha, Kathy (H)

kathyh@...

At 11:06 AM 01/01/2001 -0000, you wrote:

>Hello All,

>

>B has severe OCD and is currently an in-patient on the children's

>psychiatric unit at a huge Children's Hospital. We have a review coming up

>on Jan 3rd with the psychiatrist and would love the benefit of your

>experience , please. Since B's dx I have read everything I can get my hands

>on...some books are unavailable here in the UK and I'm trying to get them

>via the internet. On the basis of what we have read, we noticed that the

>staff on B's ward were NOT using any CBT techniques with him. Hubby and I

>spoke with the senior ward staff and found out that they do not have ANYONE

>on the staff trained in CBT at all !! I find this to be incredible as this

>is meant to be a centre of excellence.

>

>Anyway, to get to the point...the psychiatrist wants to discharge B soon

>after the review and the only follow up B will have is for the FAMILY to

>attend a clinic for family therapy. I am uneasy about this as it is a unit

>which deals primarily with dysfunctional families, usually referred by

>Social Services. ( The head of the unit is a senior social worker). When we

>spoke to the ward staff, we were told to bring up CBT at the review and to

>try and get the psychiatrist's opinion. Here in the UK, you have to be

>referred to places...there are very few private therapists and those are way

>too expensive...re-mortgaging house is impossible with little equity. How do

>we try and access the appropriate help for B without antagonising the

> " powers that be " ? ( Bearing in mind that we have , over the years, been

>labelled : over-protective mom, absent dad, munchausen's by proxy and so

>on!!)

>

>Many thanks

>a

[Guest guest]

----- Original Message -----

From: " a Macklin " <martinamack@...>

> we were told to bring up CBT at the review and to

> try and get the psychiatrist's opinion. Here in the UK, you have to be

> referred to places...there are very few private therapists and those are

way

> too expensive...re-mortgaging house is impossible with little equity. How

do

> we try and access the appropriate help for B without antagonising the

> " powers that be " ? ( Bearing in mind that we have , over the years, been

> labelled : over-protective mom, absent dad, munchausen's by proxy and so

> on!!)

Hi a, I just wanted to mention that finding effective, expert CBT for

our kids can be a challenge wherever you live and no matter the health

system involved. There just aren't enough of these therapists to go around.

I bought March and Mulle's treatment manual and have been my child's E & RP

" therapist " for over a year, because no one I can locate will agree to treat

a child her age (now almost 7.) Though this is far from first choice, could

it be an option for your family?

Other thoughts: is there a therapist you can access with an open mind,

that you can interest in learning CBT for OCD? This approach has worked for

some. Don't overlook autism resources, treatment facilities, etc. since

CBT is used in treatment of that disorder as well. Can you e-mail or write

Dr. March, Dr. Jenike (www.ocfoundation.org) or other OCD experts to ask for

names in your area? You never know who may know of whom.

Good luck in your efforts, it's unfortunate that so many parents must be

super sleuths to access effective and appropriate treatment for their kids.

Kathy R in Indiana

[Guest guest]

> . Don't overlook autism resources, treatment facilities, etc. since

> CBT is used in treatment of that disorder as well.

Dear Kathy,

Thanks for all the advice. It is a great help.

I have had to respond to this bit on autism resources with a wry grin. :-)

My daughter is autistic and I have been battling for 3 years to get ANY

input for her. I finally managed to get her to a paediatrician who is able

to access other services for us ( GP's cannot refer out of a local health

authority) but she has just turned 16 and is now an " adult " and so loses the

peadiatrician!! ( And we haven't had any referral to another service yet!!)

I am so tired of banging my head against a brick wall, trying to find out

what is on offer and where, what we are entitled to and so on.

a

[Guest guest]

I'm sorry a I didn't know (more likely didn't remember :-) that you

had a child with autism and would of course be familiar with these resources

in your area!

Is there such a thing as a case manager, public advocate, etc., who can help

you navigate the rules and regulations of the UK health system? Any

professional experts who may be able to help? Can you identify the doctor

or therapist you want, contact that person and have him/her help you work

back through the system for a referral?

Can you move? Kidding :-)

Just some thoughts (that you've probably already thought of . . . )

Kathy R in Indiana

----- Original Message -----

From: " a Macklin " <martinamack@...>

> > . Don't overlook autism resources, treatment facilities, etc. since

> > CBT is used in treatment of that disorder as well.

>

> Dear Kathy,

>

> Thanks for all the advice. It is a great help.

>

> I have had to respond to this bit on autism resources with a wry grin.

:-)

> My daughter is autistic and I have been battling for 3 years to get ANY

> input for her. I finally managed to get her to a paediatrician who is able

> to access other services for us ( GP's cannot refer out of a local health

> authority) but she has just turned 16 and is now an " adult " and so loses

the

> peadiatrician!! ( And we haven't had any referral to another service

yet!!)

> I am so tired of banging my head against a brick wall, trying to find out

> what is on offer and where, what we are entitled to and so on.

[Guest guest]

You ought not to have to tell your clinician, if they have

they training they are suppose to have. Are you going to

someone with clinical training in mental health that also does NF

or are you going to a person with just training in NF? If the

former, then you might need another clinician. If the latter,

you really need another clinician. Your part of

the team work is to inform your mental health professional of your

symptoms and they, based on years of expertise, training ought to figure

out what they need to do to help you. In 33 years

years, I never had a patient come in and tell me what procedure or

protocol I ought to be doing to help them. They might have an

idea, yet it is my job, that is what they are paying me to do, is to

figure out what can be done for them, not the other way around.

To answer your question, NF can really help with depression/anxiety and I

use it as 50-80% along with biofeedback, CES, HRV, Bach

Flowers, change of diet, insight therapy, Cognitive Behavioral

therapy, Energy Psychology, Brain Spotting, EMDR, Hypnosis,

Release Technique, herbs and medication, when needed.

Hope this helps.

Best Regards,

Diane

On 03/16/2009 5:05:00 PM, karlie0766 (jkbehlen@...) wrote:

> I am a 42 year old female just finishing my 12th session of NF

for

> depression and anxiety. I had noticed it improving after the

3rd or 4th

> session, but for the past week the depression/anxiety has come back

with a

> vengance for no apparent reason. What do I need to tell my

clinician and

> does this mean the NF will not work for me? Please help!

>

>

>

> ------------------------------------

>

>

[Guest guest]

Dear Diane and Karlie (?),

I disagree. I think that, in order for you and your clinician to have a therapeutic relationship, you must tell your clinician if you feel you are getting worse. Please identify specific examples which point to your lack or progress and/or regress so the clinician can make appropriate changes to your training. In my opinion, lack of communication between the client and the provider is the single greatest obstacle to good outcomes.

Jill Ripley, MN, RN

Glacier Biofeedback

Kalispell, MT

Re: Need Advice, please

You ought not to have to tell your clinician, if they have they training they are suppose to have. Are you going to someone with clinical training in mental health that also does NF or are you going to a person with just training in NF? If the former, then you might need another clinician. If the latter, you really need another clinician. Your part of the team work is to inform your mental health professional of your symptoms and they, based on years of expertise, training ought to figure out what they need to do to help you. In 33 years years, I never had a patient come in and tell me what procedure or protocol I ought to be doing to help them. They might have an idea, yet it is my job, that is what they are paying me to do, is to figure out what can be done for them, not the other way around.To answer your question, NF can really help with depression/anxiety and I use it as 50-80% along with biofeedback, CES, HRV, Bach Flowers, change of diet, insight therapy, Cognitive Behavioral therapy, Energy Psychology, Brain Spotting, EMDR, Hypnosis, Release Technique, herbs and medication, when needed. Hope this helps.Best Regards,Diane On 03/16/2009 5:05:00 PM, karlie0766 (jkbehlennetzero) wrote:> I am a 42 year old female just finishing my 12th session of NF for> depression and anxiety. I had noticed it improving after the 3rd or 4th> session, but for the past week the depression/anxiety has come back with a> vengance for no apparent reason. What do I need to tell my clinician and> does this mean the NF will not work for me? Please help!> > > > ------------------------------------> >

[Guest guest]

Yes, Bonnie, I'm definitely Type A! Thanks for your supportive comments. And see below for my good news. Great posts and good info here. My heart goes out to those of you contemplating the first time surgery because there's so much you need to consider and plan for. My first surgery was 10 years ago and I wish I knew then what I know now. So I suggest, as you are doing, seriously consider all the advice you are being given here. It's all right on the mark. I had two good pieces of news yesterday that I had to share. I have new neighbors, a nice young couple. I don't know them well, but she in particular is very friendly and outgoing. I did "borrow" her husband once to do some heavy lifting for me and he is a "gentle giant," quieter than his wife.

She works only two days a week. (As I mentioned I have used paid caregivers before but what I didn't like was the 4-hour minimum, so I had them come only 2 days a week, when I would have preferred something like 2 hours a day.) Long story short, we talked yesterday and my neighbor readily agreed to be my paid caregiver! How convenient is that! She will probably come in a little every day to help me, plus she already knows where the mailbox is, when the trash has to be put out, etc. The message here is, it never hurts to ask. The second good piece of news was a surprise. She asked and my sister's employer agreed to let her take just a little more time off from work without penalty so that she can stay longer in St. Louis. It still doesn't solve the rehab/hotel issue, but at least she will be with me for most of the time I'm in the hospital.I'm very happy - yesterday was a good day! (Oh yeah,

I also finished preparing my tax info!)Felicia Kramerhttp://anotherbrightidea.etsy.comwww.feliciakramer.blogspot.com

[Guest guest]

Hi Felicia,

Wonderful news! I did have a few thoughts or worries to share.

I was wondering, if you only have your sister for a limited period of time,

would there be any advantage in asking her to be with you closer to discharge

and for the hotel stay period rather than the whole of your hospital stay? Only

thinking that you will likely have very skilled nursing at the hospital

available to you, even if you have to hire your own private duty nurse, but it

gets more difficult once you are in a hotel room. Just a thought.

The other thing is completely off on a tangent, but when I read your post it

came to my mind immediately...so I thought I should share. I was reading on line

just this week about identity theft. It turns out that the most likely way to

lose your good credit/identity/money is people that you know and let into your

life/space....usually trusting to much to family or friends and neighbors. So

just a word to suggest that you take steps to limit easy access to your personal

information etc. with your neighbor helpers. It sucks to have to think like

that...but you will be vulnerable, and could easily be a target if your new

neighbors were to take advantage. You dont know all that much about them, after

all.

I guess it goes with my life motto: Plan for the worst...hope for the best!

Take Care, Cam

[Guest guest]

Hi Cam,I already explored having my sister with me during the latter part of my stay. Because of the nature of her work, It would be much more difficult for her to take time off later than earlier. The second problem is she does not live in Michigan. The person who is with me at the end has to escort me home also. I'm paying for all of my caregivers' major expenses so I'm trying to keep that reasonable. I simply will not have anyone there when it's time to be released so they will have to put me in rehab. I will count on what said - they won't throw me out on the street! LOL! As far as your second point, identity theft, I have had paid caregivers, friends and family come in many times with past surgeries with never a problem. I do make sure that any money, credit cards, etc.

are secured, close to me in the bedroom or otherwise locked up. I'm not making light of your concern; I know it's always a possibility. I'm more concerned about how to secure any valuables during the short times I'm in hospital or rehab with no family members. I'm thinking I will have to have my luggage and personal effects with me. As a single person for most of my adult life, I learned a long time ago to take whatever safety precautions necessary and then go on to live my life and not worry about all the terrible things that MIGHT happen. The only time I ever had an issue - my credit card number was stolen by an employee at K-Mart when she processed my purchase!Thanks for all your tips and ideas - keep 'em coming! Felicia Kramerhttp://anotherbrightidea.etsy.comwww.feliciakramer.blogspot.com

[Guest guest]

Hi Felicia,

Very, very, good news! You are so right. It never hurts to ask.

Bonnie