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As for the time out for compulsions, I initially thought this was

cruel. However, for some reason, this sort of logic seems to work

well for my five year old daughter. No, it doesn't seem fair because

the completing of a compulsion isn't really volitional. However,

playing the tough parent often (not always) works. The more firm and

non-empathetic I am, the better it works. I asked the therapist why

it worked and he said I am doing thought stopping for her. At some

point, hopefully she will be able to do it for herself. But the

firmer I am without backtracking and saying , " Oh, you poor dear, I

know you really want to do this, or I know it really bothers you when

this isn't lined up " --the easier it is for her to stop. When I

indulge her in the least, even empathizing at all, the thought

stopping doesn't work as well. I haven't actually given a time out

for it though. I just say, " , I want you to stop that right

now. " She will start to wimper and I'll firmly repeat, " No, you

cannot keep touching the doorknob. Once is enough. Your OCD is

making you want to touch it more, but once was enough. Come on,

let's go do something else. " Sometimes I will provide a logical

consequence... " If you keep touching it, we will not have time to

play a game later. " This usually works. It may not be a great long

term solution, but I'm thinking maybe it will break some bad habits

and show her that she will not fall apart if she doesn't get to

complete her compulsion. It works only because of her age and her

respect for authority at this age. Later, she'll probably do it more

if I tell her not too. I think a logical consequence is usually

better than just a time out, but I guess it would depend on the

situation. also touches her crotch constantly. She tells me

she is lining up her panties so they don't stick in her crotch. It

got really bad for awhile. I told her not to do it in public, that

people didn't want to see her touch her private parts. This didn't

work at first. In fact, when I would see her do it she would tell me

to turn my head. Finally when I layed off of it for awhile, she

quit. She does it occasionally, but not that often anymore. They

seem to switch compulsions a lot when they are young. Hope this

helps.

Stephany

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HI :

Your instincts and ideas sound very good to me. But of course I am

not a doc just another mom with a child with OCD.

I have heard of the compulsion of checking and sniffing before. It

sounds like your neurologist is on the right track.

Most of the good OCD behavior therapists I have met support medications,

i.e. the anti-obsessionals. Sometimes the quick acting anti-anxiety

meds can interfere with CBT but the SSRIs can mean the difference between

a child being able to start CBT or not. I hope you can discuss this

issue openly with the recommended CBT therapist.

Punishing kids for compulsions and teaching them physical abuse is okay

are not helpful for OCD (and other things too). It sounds like

Avery's therapist is on the right track with the Dornbush and March and

Mulle books. As you get further in therapy you will learn to take

the risk and provoke a fairness meltdown by giving the squeeze toys

early. If you have a plan in place and ways to cope, learning to

cope with meltdowns can be an important way our kids recover. Of

course this needs to be part of the plan for their E & RP work.

Distracting someone when they are busy with OCD can work if you are

working low enough on their hierarchy. It may not always

work. SOmetimes subsituting another action can develop into a

substitute compulsion. The essence of successful E & RP is to

confront the anxiety through exposure and not perform the rituals

(physical or mental). This causes an anxiety spike which can be a

big meltdown, but remember, anxiety never killed anyone. It just

feels to them like it will.

Good luck, , take care, aloha, Kathy (H)

kathyh@...

At 01:37 AM 12/20/2000 -0600, you wrote:

Today I took Avery

and Gracie to the neurologist. He was thrilled with Gracie's potty

training and also felt like she was interacting much better (one more

step away from the pediatrician's PDD dx, Yea!). He agreed to

change Avery from Paxil to Zoloft in hopes of combating the ocd

better. He doesn't think her charming habit of sticking her hand in

her pants and then sniffing her fingers is a tic. He called it a

complex compulsion. He said a tic would be only one action (i.e.

touching or sniffing) but that with our genetics, we would probably see

tics eventually. sigh... We talked about the one therapist

I've heard of in town who does e & rp therapy. He thinks very

highly of this doctor but warned me that the first thing he would want to

do is take the kids off of all meds. He said this guy is very

against medication for ocd. Of course, I'd like my kids off meds,

but don't they usually start the therapy and then wean off of meds after

some success? I can't imagine how therapy could be very effective

with Ian raging or Avery cowering. I guess I'll just have to talk

to him about it.

Avery had a therapist's appt. this afternoon and I went in

all ready to fire her because she hadn't investigated e & rp therapy as

she had promised. Of course, the first thing she did when we got

there was to pull out " Teaching the Tiger " and the March

Protocol. I talked to her about my disagreement with what she'd

told Avery about her giving Ian permission to hit her if she purposely

annoyed him or went in his room without permission. The therapist

assured me that she only meant that Avery needed to be aware of

consequences and that she didn't think it was okay for Ian to hit

Avery. I know I am hyper-sensitive about this as I grew up with a

bully big brother who hit me freely and without punishment for 11

years. Still, I made it clear that I don't want her teaching Avery

that she ever deserves to be hit. Is this unreasonable?

I also have another disagreement with her. She told me I

should put Avery in time out everytime I catch her sniffing her fingers

or twisting or pulling her hair. I don't think a time out for a

compulsion is really fair or effective. It seems to me that she

would just continue the compulsion in private. Does this seem

valid? I did get Avery a couple of squeeze toys for stocking

stuffers. I don't dare give them to her early without risking a

fairness meltdown from Ian. I thought trying to substitute an

action might be a more effective way to deal with her compulsion.

Am I on the right track?

Any thoughts or opinions would be appreciated!

in Texas

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Hi , some thoughts:

>We talked about the one therapist I've heard of in town who does e & rp therapy. He thinks very highly of this doctor but warned me that the first thing he would want to do is take the kids off of all meds. He said this guy is very against medication for ocd. Of course, I'd like my kids off meds, but don't they usually start the therapy and then wean off of meds after some success? I can't imagine how therapy could be very effective with Ian raging or Avery cowering. I guess I'll just have to talk to him about it.

I too would be reluctant to take Kel off all meds as a prerequisite to beginning E & RP. I have often heard meds described as "water wings" to give kids confidence as they learn bossing skills. I think it's more usual to attempt to reduce meds gradually during or following E & RP therapy. I do know many kids are able to function on a lower dose of SSRI following successful E & RP. Perhaps the therapist is concerned that the children will have few symptoms and low motivation if taking meds?

>Avery had a therapist's appt. this afternoon and I went in all ready to fire her because she hadn't investigated e & rp therapy as she had promised. Of course, the first thing she did when we got there was to pull out "Teaching the Tiger" and the March Protocol. I talked to her about my disagreement with what she'd told Avery about her giving Ian permission to hit her if she purposely annoyed him or went in his room without permission. The therapist assured me that she only meant that Avery needed to be aware of consequences and that she didn't think it was okay for Ian to hit Avery. I know I am hyper-sensitive about this as I grew up with a bully big brother who hit me freely and without punishment for 11 years. Still, I made it clear that I don't want her teaching Avery that she ever deserves to be hit. Is this unreasonable?

IMO Avery will benefit from learning there are consequences--since this is true throughout our lives it's something we all need to learn sooner or later. But I am also uncomfortable with physical consequences, especially between siblings since this can degrade into a situation where the bigger/stronger is doing all the "teaching"--as you know. That the therapist does seem to be learning about E & RP is a good sign, and in your situation I would expect her to respect my position on this issue, or tell me otherwise plainly, so I could make the best decision for my kids.

> I also have another disagreement with her. She told me I should put Avery in time out everytime I catch her sniffing her fingers or twisting or pulling her hair. I don't think a time out for a compulsion is really fair or effective. It seems to me that she would just continue the compulsion in private. Does this seem valid?

I agree that consequencing compulsions is unhelpful and unfair to the child, who after all does not want to be doing them. Compulsions are not behavior issues, which do respond to consequences, though they can look like them. Compulsions can be reduced or eliminated through E & RP therapy, which the therapist will learn as she reads March's treatment manual. Compulsions are their own punishment IMO.

> I did get Avery a couple of squeeze toys for stocking stuffers. I don't dare give them to her early without risking a fairness meltdown from Ian. I thought trying to substitute an action might be a more effective way to deal with her compulsion. Am I on the right track?

Kel's had success using substitutes for unacceptable compulsions in public. Having a "fiddle ball" in her desk at school helped her quit biting her nails for example, then as this urge or compulsion (she says it's OCD) diminished she used the ball less and less. In our experience E & RP works best on compulsions but there are some things that Kel says are OCD but which also seem ticcy or habit-like, such as the biting, where other approaches were helpful.

Hope I've helped. Happy holidays to you and your family :-)

Kathy R in Indiana

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  • 7 months later...

In a message dated 8/16/01 6:50:18 AM Pacific Daylight Time, jeanette_cuk@... writes:

Also since i have been on Prednisolone i have noticed very small red spots coming up on my body and legs can anyone tell me if they have noticed this happening.

I had those speckles of red; skin changes of various kinds seem to be fairly common with Prednisone, and many of them go away as the dosage decreases.

(One must also watch for skin cancer, of course.)

I'm sorry to hear about your difficulty in getting medical appointments.

Harper (AIH 5/00)

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  • 4 years later...
Guest guest

Hi Carol...

My Ct myleogram was a piece of cake, but I think it depends on how good the radiologist is. I’m surprised to hear that you need to stay in bed for 24 hours. I was really completely fine after a few hours, and went about my day/night as usual. If possible, it might be good for you to talk to the radiologist before your appointment to be sure s/he understands that you have a long fusion. Luckily, I was able to have my test done at UCSF where the radiologist was used to doing it on people with fusions.

Regards,

On 8/5/06 11:59 AM, " Carol " <dcvaughan@...> wrote:

I was able to get an appointment for the CT Mylogram that Dr. Hu

ordered for this coming Thurs Aug 10th. Is there anything I should know

about this procedure before I go and have it done? They said I need to

have someone drive me home afterward and I have to stay in bed for 24

hrs afterward, too. I was not able to get into the Urologist until Aug

23--he's booked up that far in advance. He wants to see me (consult)

before any procedure is done. After I see him he can schedule the

procedure. Any pointers that anyone can give me on the CT would be

appreciated.

Carol (CA)

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I am having a myelogram CT on Tuesday, and my doctor's office also

said to plan on staying in a reclined position for 24 hours. I was

trying to ask how long I would be at the hospital, because my hubby

doesn't want to take off work to take me. They said my doc usually

doesn't keep people there very long after the procedure, but would

rather let people go home with instructions to stay in bed.

My daughter put a gash down the side of the car when I took her

driving last time, so I am a bit nervous about having her be the

driver. I am going to try to find a friend she can call when it is

about time to go home.

I do know that since my pain management doctor is the radiologist

that is doing my procedure, I should get some decent drugs to help

me stay in bed.

I am planning to go to the library and get a few paperback books to

read.

>

> > I was able to get an appointment for the CT Mylogram that Dr. Hu

> > ordered for this coming Thurs Aug 10th. Is there anything I

should know

> > about this procedure before I go and have it done? They said I

need to

> > have someone drive me home afterward and I have to stay in bed

for 24

> > hrs afterward, too. I was not able to get into the Urologist

until Aug

> > 23--he's booked up that far in advance. He wants to see me

(consult)

> > before any procedure is done. After I see him he can schedule the

> > procedure. Any pointers that anyone can give me on the CT would

be

> > appreciated.

> >

> > Carol (CA)

>

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I had this procedure done a couple of weeks ago. In my experience the procedures was virtually pain free and quick. The problems I had were after. I stayed in bed one day altough I felt fine. Once I got up and went to work the next day I had a KILLER headache. It was so bad I forgot my back and hip pain. Ended up for some reason spinal fluid leaked out of the "HOLE" that was created during the procedure. They did a blood patch which they just took some of my blood and patched up the hole so the fluid woulnt leak. Once that was done I felt fine. WHEW.Carol <dcvaughan@...> wrote: I was able to get an appointment for the CT Mylogram that Dr. Hu ordered for this coming Thurs Aug 10th. Is there anything I should know about this procedure before I go and have it done? They said I need to have someone drive me home afterward and I have to stay in bed for 24 hrs afterward, too. I was not able to get into the Urologist until Aug 23--he's booked up that far in advance. He wants to see me (consult) before any procedure is done. After I see him he can schedule the procedure. Any pointers that anyone can give me on the CT would be appreciated. Carol (CA)

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  • 2 years later...

I would push the ortho to let you keep the band as long as it fits.

There is no reason not to and her head is still growing even if it is

more slowly. CT treats babies up to 2 years and sees results. Let us

know how your next appt goes. Don't worry about red spots - they mean

the head is growing. If you get some, then go for an adjustment. It is

probably better to have a closer fit in the meantime. Also my daughter

wore her band for 20 wks and she was young, so I know it can take a

while, but it does help.

-christine

sydney, 3 yrs, starband grad

>

> We had our helmet appointment on Monday. has 13 weeks in the

helmet.

> No adjustments were made, but the substitute orthotist stuck

something in

> the helmet and said that the right side seemed a little tight. When

I told

> her the red spots were gone within the hour, she didn't shave

anything out.

> Of course, now I'm worrying that will have sores soon.

>

> That's actually good news because we did have some shaved out last

time (4

> weeks ago) and it seemed a little loose to me after that. Now, it

seems to

> fit perfectly. That must mean that she has grown.

>

> Anyway, we've now been told that at our next appointment, they will

scan her

> head to determine whether to keep her in the helmet. That will be in

4 weeks

> and after 17 weeks in the band. I know that the Doc band is only

good for 4

> months anyway, but the STARband is supposed to be good for 6 months. The

> reason for possibly not continuing is her age. They said that helmet

therapy

> is only indicated for up to 18 months so they anticipate that her growth

> will slow down. If her growth slows down, they will recommend taking her

> out. Or, if we're within 2 standard deviations (I think at 90 or

91), then

> they'll also recommend this. I'm very torn, but feel that I'd like

to see

> her continue for at least 8 more weeks, if not the full 6 months.

After all,

> why not get the most improvement that we can. Neither nor

the rest

> of the family mind the helmet. I don't want to be a pain in the butt

mom,

> but I would like to get the most improvement possible. Any

suggestions for

> how to approach this?

>

> I suppose that I may be worrying for nothing. Perhaps they will

recommend

> that we keep going given that does appear to be growing. I

just want

> to be prepared. I don't think well on my feet.

>

> Oh, we also had her second to last CST appointment. The PT says that

> everything feels great and is working with the helmet well. We go

back for

> one visit in 5 weeks to make sure that everything is still fine.

>

> , mom to , 17 months 3 weeks

>

> 13 weeks in STARband (Brachy 95 percent to 92.3 percent) plus CST

>

> Edgewood, MD

>

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