Re: Daughter not motivated CBT/ERP

[Guest guest]

Both of the two therapist that I liked have told me that it is useless for

my daughter to see them if she is not on board to experience the anxiety and

learn to be okay with that feeling. They both wanted to help my daughter

immensely but also were quick to say if they didn't feel like they were

helping her. I would not spend the money if I did not think my daughter was

on board to do the work and I saw proof of that in her actions. I am in

that position right now and though I will continue to see her if I need

advice, Lilly will not be going unless she is motivated to face the anxiety

and not run from it.

Does the therapist send home work home? (erp homework) Does she do the

exposures? There really is a difference between someone who is trained more

on the Cognitive end of CBT than on the behavioral end. These kids mainly

need to do the exposure response prevention and to have a trusting

connection with the therapist.

M daughter is not on-board yet to do the exposures because she finds it too

difficult. We're trying to find ways to make her successful, even in small

ways at home. For her it helps to face exposures when other people are

around. (not immediate family) We're hoping the success she has when other

people are around will carry over to the days when she is alone. She is

also on a new medication and we just had blood draw today to see if it is

possibly PANDAS.

What does your daughter think about the therapist and what she is doing

there? I know it is discouraging. Hang in there. I've found it helpful to

distance myself emotionally when she loses out on doing something because

she's not willing to face the anxiety. It sounds mean but it leaves the

responsibility of her loss on her own shoulders and has proven to motivate

her to face it, even when its really difficult.

We had a rough day today because of the anxiety the blood draw caused.

Wipes me right out.

My daughter has been in CBT/ERP off and on since 2004. She is not

motivated to work hard in the therapy (except for a short period of time

when she was on a medication that helped her depression and OCD, but she

had to stop taking because of side effects).

[Guest guest]

Hi,My daughter is 6 1/2 years old and also had blood work drawn to r/o pandas

last week.I had her pediatrician order lidocaine and prilocaine cream

2.5%/2.5%.It is topical and you apply it to the skin.Also I gave her benadryl

which was 2 hours before her blood draw because after driving to the lab that is

a hour away we then had to wait.I don't know if the above helped or we just got

lucky but she got her blood drawn without too much anxiety.It was the first time

she had it done.She just made a face!The cream helps numb the area.I hope this

information might help other parents and children.Please update the site

regarding test results.Take care,Steph

Subject: RE: Daughter not motivated CBT/ERP

To:

Date: Thursday, November 5, 2009, 8:03 PM

 

Both of the two therapist that I liked have told me that it is useless for

my daughter to see them if she is not on board to experience the anxiety and

learn to be okay with that feeling. They both wanted to help my daughter

immensely but also were quick to say if they didn't feel like they were

helping her. I would not spend the money if I did not think my daughter was

on board to do the work and I saw proof of that in her actions. I am in

that position right now and though I will continue to see her if I need

advice, Lilly will not be going unless she is motivated to face the anxiety

and not run from it.

Does the therapist send home work home? (erp homework) Does she do the

exposures? There really is a difference between someone who is trained more

on the Cognitive end of CBT than on the behavioral end. These kids mainly

need to do the exposure response prevention and to have a trusting

connection with the therapist.

M daughter is not on-board yet to do the exposures because she finds it too

difficult. We're trying to find ways to make her successful, even in small

ways at home. For her it helps to face exposures when other people are

around. (not immediate family) We're hoping the success she has when other

people are around will carry over to the days when she is alone. She is

also on a new medication and we just had blood draw today to see if it is

possibly PANDAS.

What does your daughter think about the therapist and what she is doing

there? I know it is discouraging. Hang in there. I've found it helpful to

distance myself emotionally when she loses out on doing something because

she's not willing to face the anxiety. It sounds mean but it leaves the

responsibility of her loss on her own shoulders and has proven to motivate

her to face it, even when its really difficult.

We had a rough day today because of the anxiety the blood draw caused.

Wipes me right out.

My daughter has been in CBT/ERP off and on since 2004. She is not

motivated to work hard in the therapy (except for a short period of time

when she was on a medication that helped her depression and OCD, but she

had to stop taking because of side effects).

[Guest guest]

<Hi,My daughter is 6 1/2 years old and also had blood work drawn to r/o pandas

last week.I had her pediatrician order lidocaine and prilocaine cream

2.5%/2.5%.It is topical and you apply it to the skin.>

We also used that cream and it helped a lot. In the end she also needed a

sedative. But, now that she has had one good experience, (preceeded by two bad

experiences with a blood draw and an iv) I think she’ll be okay if she needs

one again.

The more I read, the more I think Lilly does indeed have PANDAS. The one thing

that I had always thought must be present with a PANDAS child was acute

overnight onset and in my reading I have found that it isn’t always true. She

did have one over-night symptom initially, which was frequent urination but I

didn’t even know that was a symptom of PANDAS till I watched that video by Dr.

Swedo.

I will certainly update you guys when I find out the results of her ASO titer

and throat swab.

[Guest guest]

We also had faced a similar situation with our daughter (11) - we had a very

good CBT-ERP therapist and tried all kinds of tools/rewards to motivate.    We

started feeling so frustrated as her OCD serverity progressed - she is so smart

and totally got the concept of the Exposures, but wanted nothing to do with

them. We decided to try classical Homeopathy and learned that the discomfort she

felt in talking about or having attention put on herself during the therapy

was looked at as one of the key symptoms used to diagnose her remedy. I also

found it interesting that someone else posted recently their child was a " toe

-walker " , as that was an idicator they used as well - I know it sounds goofy

.  Did not think homeopathy was going to work very well but have been so happy

we tried it.  She is a different person compared to 6 months ago.  In case

anyone is interested in a good Homeopathic doctor that treats behavioral health

disorders we used Dr. Mark Janikula and his website is www.vitalhomeopathic.com

 

[Guest guest]

Thanks for replying. Yes, the therapist does send some homework and my

daughter says she does it (or some of it), but it seems that she stays

really stuck on one thing for a long, long, time. I think they've been

working on my daughter cutting back on her hand washing since last

spring and it may be fractionally better... that seems slow to me. My

daughter is 18 now and a senior in high school and she wants to handle

this on her own... I wholeheartedly agree that it needs to be handled by

her (at her age), but at the same time, I'm the one driving her there

and paying for it and when I see little progress for years, I can't help

but be discouraged, especially when I know she's suffering and could get

better.

I think my daughter likes the therapist, but I almost think she's too

comfortable with her. About 6 months ago, even the therapist said that

my daughter may need to see someone else if more progress isn't made. My

daughter didn't like that. She says that she just needs to try harder

and I think she really means to but she's just not motivated. Part of

this may be because she is depressed. I think your idea about facing

exposures when others are around (not family) is a good one. My daughter

always is able to handle things at a whole different level when her

friends are around.

I'm sorry you had a rough day due to the blood being drawn, and thanks

again for your input.

N.

Shaw wrote:

>

>

> Both of the two therapist that I liked have told me that it is useless for

> my daughter to see them if she is not on board to experience the

> anxiety and

> learn to be okay with that feeling. They both wanted to help my daughter

> immensely but also were quick to say if they didn't feel like they were

> helping her. I would not spend the money if I did not think my

> daughter was

> on board to do the work and I saw proof of that in her actions. I am in

> that position right now and though I will continue to see her if I need

> advice, Lilly will not be going unless she is motivated to face the

> anxiety

> and not run from it.

>

> Does the therapist send home work home? (erp homework) Does she do the

> exposures? There really is a difference between someone who is trained

> more

> on the Cognitive end of CBT than on the behavioral end. These kids mainly

> need to do the exposure response prevention and to have a trusting

> connection with the therapist.

>

> M daughter is not on-board yet to do the exposures because she finds

> it too

> difficult. We're trying to find ways to make her successful, even in small

> ways at home. For her it helps to face exposures when other people are

> around. (not immediate family) We're hoping the success she has when other

> people are around will carry over to the days when she is alone. She is

> also on a new medication and we just had blood draw today to see if it is

> possibly PANDAS.

>

> What does your daughter think about the therapist and what she is doing

> there? I know it is discouraging. Hang in there. I've found it helpful to

> distance myself emotionally when she loses out on doing something because

> she's not willing to face the anxiety. It sounds mean but it leaves the

> responsibility of her loss on her own shoulders and has proven to motivate

> her to face it, even when its really difficult.

>

> We had a rough day today because of the anxiety the blood draw caused.

> Wipes me right out.

>

>

>

> My daughter has been in CBT/ERP off and on since 2004. She is not

> motivated to work hard in the therapy (except for a short period of time

> when she was on a medication that helped her depression and OCD, but she

> had to stop taking because of side effects).

>

>

[Guest guest]

I tend to think that if you have been trying something for years, then it is

time to change therapists. Perhaps the change will help - sometimes just seeing

things from a new perspective can help. And you can always go back to the

" favorite " therapist for maintenence, so it does not feel like a complete break.

Good luck - the motivation piece of things is very hard.

>

> My daughter has been in CBT/ERP off and on since 2004. She is not

> motivated to work hard in the therapy (except for a short period of time

> when she was on a medication that helped her depression and OCD, but she

> had to stop taking because of side effects). I'm so discouraged because

> I know from personal experience that CBT/ERP works, but it seems she

> just isn't making much progress. I'm so tired of spending years of time

> and money and feeling like it's not helping. I really don't know if its

> because she's not working hard or if she just needs a different therapist.

>

> Does anyone have any thoughts or advice? Thanks.

>

[Guest guest]

I am no hypnotherapist, but it is well known ot be effective for people trying

to loose weight, deal with phobias, change their life in some way . The

hypnotherapist puts them into a hypnotic state and then induces a suggestion

while under hypnosis and it is easier to follow or something- not exactly sure

as I was not in the room. Anyway, they can not make you do something you dont

want to do, but if you are blocked by fear or conflicting emotions or some other

thing, thye are capaple of helping to get around that and turely seeing how much

the disease is impacting and getting past the block to motivate to do something

about it. She also gave him a CD of the whole session so he can listen to it

whenever he wants and can in effect get " re hipnotized " He went 3 times at $90

a pop not covered by insurance, but he felt it helped him a lot. It is totally

worth a try if you have the money. I dont think it can hurt

[Guest guest]

I agree with you - it's time to make a change.

thanks,

miller n.

susangalway wrote:

>

>

> I tend to think that if you have been trying something for years, then

> it is time to change therapists. Perhaps the change will help -

> sometimes just seeing things from a new perspective can help. And you

> can always go back to the " favorite " therapist for maintenence, so it

> does not feel like a complete break. Good luck - the motivation piece

> of things is very hard.

>

>

> >

> > My daughter has been in CBT/ERP off and on since 2004. She is not

> > motivated to work hard in the therapy (except for a short period of

> time

> > when she was on a medication that helped her depression and OCD, but

> she

> > had to stop taking because of side effects). I'm so discouraged because

> > I know from personal experience that CBT/ERP works, but it seems she

> > just isn't making much progress. I'm so tired of spending years of time

> > and money and feeling like it's not helping. I really don't know if its

> > because she's not working hard or if she just needs a different

> therapist.

> >

> > Does anyone have any thoughts or advice? Thanks.

> >

>

>

[Guest guest]

Now that you mention it, I think my mother-in-law tried hypnosis to help

her stop smoking. I can see how it could help with getting over fears or

conflicting emotions, too.

thanks,

miller n.

Trabulsy, wrote:

>

>

> I am no hypnotherapist, but it is well known ot be effective for

> people trying to loose weight, deal with phobias, change their life in

> some way . The hypnotherapist puts them into a hypnotic state and then

> induces a suggestion while under hypnosis and it is easier to follow

> or something- not exactly sure as I was not in the room. Anyway, they

> can not make you do something you dont want to do, but if you are

> blocked by fear or conflicting emotions or some other thing, thye are

> capaple of helping to get around that and turely seeing how much the

> disease is impacting and getting past the block to motivate to do

> something about it. She also gave him a CD of the whole session so he

> can listen to it whenever he wants and can in effect get " re

> hipnotized " He went 3 times at $90 a pop not covered by insurance, but

> he felt it helped him a lot. It is totally worth a try if you have the

> money. I dont think it can hurt

>

>

[Guest guest]

>I think a good therapist makes all the difference. My daughter was willing to

do any exposure, but merely plodded along during inferior treatment. After only

a few days in an intensive program with an excellent therapist, she began to

make notable progress.

Terry

> My daughter has been in CBT/ERP off and on since 2004. She is not

> motivated to work hard in the therapy (except for a short period of time

> when she was on a medication that helped her depression and OCD, but she

> had to stop taking because of side effects). I'm so discouraged because

> I know from personal experience that CBT/ERP works, but it seems she

> just isn't making much progress. I'm so tired of spending years of time

> and money and feeling like it's not helping. I really don't know if its

> because she's not working hard or if she just needs a different therapist.

>

> Does anyone have any thoughts or advice? Thanks.

>

[Guest guest]

I'm glad it worked for your child, but just a caution for those thinking of

trying it. My son's therapist tried hynosis with him and he went into a panic

attack. She took him back to what he feared once he was calmed by her

suggestions of being on a peaceful beach. Then she asked him to replace his fear

with the calming suggestions of a beach. It was too much for him and he totally

freaked out and paniced, wanting to leave immediately. It took him hours to calm

down and he refused to ever go back to her so we had to find a new therapist. My

son is 13 and was just diagnosed with PANDAS. Interestingly, the PANDAS doctor

explained to me that the brain swelling of PANDAS causes the child to be in

state of hyper alert due the brain not being able to filter out sensory input.

Everything around him is given equal value of importance until he is not only

hyper alert but in a state of fear due to the overload on his senses. The brain

then begins to find things to be afraid of - thus the OCD. So it makes sense

that the hypnosis wouldn't work because his brain could not filter out the fear

and replace it with the beach due to his filter system in the brain being

inflamed and not working properly. Just a guess. Anita

[Guest guest]

What an interesting description of a PANDAS child. A lot of kids do seem to

have onset or exaserbation of Sensory Integration issues at the same time as the

OCD onset, so this makes sense to me, based on our experience. Did we ever have

Sensory issues!!! Who is your PANDAS doc? I'd like to post that name for other

parents on the PANDAS board.

Thanks - in NC

>

My son is 13 and was just diagnosed with PANDAS. Interestingly, the PANDAS

doctor explained to me that the brain swelling of PANDAS causes the child to be

in state of hyper alert due the brain not being able to filter out sensory

input. Everything around him is given equal value of importance until he is not

only hyper alert but in a state of fear due to the overload on his senses. The

brain then begins to find things to be afraid of - thus the OCD. >

[Guest guest]

Your doctor sounds like one in a million. I would like to find someone like

that in Houston. Where do you live?

Beth

From:

[mailto: ] On Behalf Of PrairieS

Sent: Monday, November 09, 2009 7:43 AM

To:

Subject: Re: Daughter not motivated CBT/ERP

I'm glad it worked for your child, but just a caution for those thinking of

trying it. My son's therapist tried hynosis with him and he went into a

panic attack. She took him back to what he feared once he was calmed by her

suggestions of being on a peaceful beach. Then she asked him to replace his

fear with the calming suggestions of a beach. It was too much for him and he

totally freaked out and paniced, wanting to leave immediately. It took him

hours to calm down and he refused to ever go back to her so we had to find a

new therapist. My son is 13 and was just diagnosed with PANDAS.

Interestingly, the PANDAS doctor explained to me that the brain swelling of

PANDAS causes the child to be in state of hyper alert due the brain not

being able to filter out sensory input. Everything around him is given equal

value of importance until he is not only hyper alert but in a state of fear

due to the overload on his senses. The brain then begins to find things to

be afraid of - thus the OCD. So it makes sense that the hypnosis wouldn't

work because his brain could not filter out the fear and replace it with the

beach due to his filter system in the brain being inflamed and not working

properly. Just a guess. Anita

No virus found in this incoming message.

Checked by AVG - www.avg.com

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19:39:00

[Guest guest]

The doctor is Dr. Kovacevic in Chicago who has been treating PANDAS for 10

years. I found a local pediatrician in Austin where I live, with help from

members of this group, willing to consult with Dr. K. on testing for PANDAS. He

was so kind he even saw my son through the car window because he was too afraid

to come in. I couldn't find anyone local willing to treat for it with IVIG so we

drove to Chicago, in a rented RV because my son will not use airplanes or

hotels. My son was diagnosed with many things: Post Traumatic Stress, ADHD,

dyslexia, dysgraphia, mood diorder, bipolar, severe OCD, Tourettes, behavior

problems, overly sensitive and of course, got to love it, bad parenting skills,

specifically not enough discipline. You can find doctors willing to treat on the

Latitudes website, none in Texas though. Dr. K. also will consult for no charge

any doctor willing to treat. Dr. K. said he saw the PANDAS look in my sons eyes

the moment he met him, hyper alert and fearful. The reason PANDAS kids regress,

he believes, is because they are going back to a safe time, a safe age because

of the trauma of sensory input and the fear it creates. Makes sense. Another way

to treat for PANDAS is with high doses of antibiotics which is cheaper if your

insurance won't pay for the IVIG because it is expensive. Again, the Latitudes

website lists some as well as the Saving Sammy website. We are in a wait and see

stage now with my son as the IVIG takes weeks to notice a change. We are

hopeful, but prepared for disappointment as this has been a long road. He also

will continue with SSRI medication and ERP therapy.

Anita

>

> Your doctor sounds like one in a million. I would like to find someone like

> that in Houston. Where do you live?

>

>

>

> Beth

>

>

>

> From:

> [mailto: ] On Behalf Of PrairieS

> Sent: Monday, November 09, 2009 7:43 AM

> To:

> Subject: Re: Daughter not motivated CBT/ERP

>

>

>

>

>

> I'm glad it worked for your child, but just a caution for those thinking of

> trying it. My son's therapist tried hynosis with him and he went into a

> panic attack. She took him back to what he feared once he was calmed by her

> suggestions of being on a peaceful beach. Then she asked him to replace his

> fear with the calming suggestions of a beach. It was too much for him and he

> totally freaked out and paniced, wanting to leave immediately. It took him

> hours to calm down and he refused to ever go back to her so we had to find a

> new therapist. My son is 13 and was just diagnosed with PANDAS.

> Interestingly, the PANDAS doctor explained to me that the brain swelling of

> PANDAS causes the child to be in state of hyper alert due the brain not

> being able to filter out sensory input. Everything around him is given equal

> value of importance until he is not only hyper alert but in a state of fear

> due to the overload on his senses. The brain then begins to find things to

> be afraid of - thus the OCD. So it makes sense that the hypnosis wouldn't

> work because his brain could not filter out the fear and replace it with the

> beach due to his filter system in the brain being inflamed and not working

> properly. Just a guess. Anita

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.425 / Virus Database: 270.14.55/2490 - Release Date: 11/08/09

> 19:39:00

>

>

>

>

[Guest guest]

My son's therapist tried hynosis with him and he went into a panic attack. She

took him back to what he feared once he was calmed by her suggestions of being

on a peaceful beach. Then she asked him to replace his fear with the calming

suggestions of a beach. It was too much for him and he totally freaked out

Yes this is something different than I was talking about. Our hypnotherapist (

different than his therapist) talked about doing age regression but was worried

it coud ferak him out too much. We decided to really do the hypnosis just for

motivation to do the CBT/ERP ( though I have to say Quinns CBT/ ERP has sent

him into MANY panic attacks- lying on the floor , crying shaking and sweating,

saying he cant do it etc- thats kind of the whole point of it- to maximize the

fear and let them sit in it with the knowlege that it will decrease over time-

this was one of the things we learned at the USF study- to NOT do relaxation

stuff during the exposure and in fact to poke the OCD, make it more anxious and

then just sit there- it was brutal! But it worked). He did not do hypnosis for

the OCD per se as I have seen no data to show that anything other than( as far

as therapy goes) CBT/ERP works. So, he did not do hypnosis to deal with the

fear or the OCD, just to work on motivation. I think this is potentially much

less triggering than getting hypnotized into a place of fear and then trying to

relax in it.