To Debbie

[Guest guest]

HI Debbie:

In your position I would look outside the HMO. OUr kids are suffering and

the sooner they get good treatment, the faster they can get their lives

back on track. OCD can interfere with normal development so delays in

treatment can have a negative impact in more than one way. At times Steve

would behave like he was only 3 when he was chronologically 10. Now he is

13, he still has moments when he behaves in a non-age appropriate way, but

this is much less common.

If you want to battle with the HMO to get them to pay for your going

outside their network, you will need to equip yourself with a lot of

information about OCD and its treatment. You might want to start with the

Expert Consensus Guidelines on the Treatment of OCD. Also you might want

to show them the March protocol. You will probably have to provide them

with evidence that their docs are not up to providing the correct treatment

which might be tricky to accomplish.

I have had to do battle with the schools here as they determine what mental

health services Steve gets due to the state losing a class action law suit

some 6 years ago. It has taken a lot of time, but the financial help has

made it worth while especially when Steve was quite ill and needed regular

and frequent treatment. If I had ever had the choice of finding a

knowledgeable doctor/therapist less than 250 miles away I think I would

have avoided the system entirely and paid out of pocket. Not an easy

decision for any family, but necessary to avoid delays in treatment of a

suicidal child.

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

kathyh@...

At 02:28 AM 04/09/2000 EDT, you wrote:

>Thanks Gail! I'm not sure how much else I can ask this " therapist " . she

was

>very vague when I asked about her methods of treatment and her education.

>Since she had never heard of E & RP, it raised a red flag and I knew I was not

>dealing with the right person for my daughter. I don't know how to go

about

>getting my HMO to lat me see someone else. They only have these 2 people

and

>they both say they've not heard of E & RP!!

>I'm still working on all this. I thank you for your input and support.

>Debbie

[Guest guest]

Thanks for the tip, Pat. I've contacted my HMO and they told me to go back to

the referral dr. and fight for a referral to someone who knows about OCD

treatment (E & RP). Did that this morning. She will talk to the psychiatrist

today to ask about the methods they usually use. Since none of the

" therapists " knew about E & RP, I'm not sure the psychiatrist will either.

I'll just have to keep fighting for what I know my daughter needs. I

appreciate the support.

Debbie

[Guest guest]

Debbie,

At this point my husband and I decided that we would do anything to make

are son well, even if it means going outside our HMO, which we are doing, I

know the cost is going to be alot, but I just don't care at this point, If

I get results it will all be worth it.

Pat

----------

> From: Kathy Hammes <kathyh@...>

> egroups

> Subject: Re: To Debbie

> Date: Sunday, April 09, 2000 11:44 PM

>

> HI Debbie:

>

> In your position I would look outside the HMO. OUr kids are suffering

and

> the sooner they get good treatment, the faster they can get their lives

> back on track. OCD can interfere with normal development so delays in

> treatment can have a negative impact in more than one way. At times

Steve

> would behave like he was only 3 when he was chronologically 10. Now he

is

> 13, he still has moments when he behaves in a non-age appropriate way,

but

> this is much less common.

>

> If you want to battle with the HMO to get them to pay for your going

> outside their network, you will need to equip yourself with a lot of

> information about OCD and its treatment. You might want to start with

the

> Expert Consensus Guidelines on the Treatment of OCD. Also you might want

> to show them the March protocol. You will probably have to provide them

> with evidence that their docs are not up to providing the correct

treatment

> which might be tricky to accomplish.

>

> I have had to do battle with the schools here as they determine what

mental

> health services Steve gets due to the state losing a class action law

suit

> some 6 years ago. It has taken a lot of time, but the financial help has

> made it worth while especially when Steve was quite ill and needed

regular

> and frequent treatment. If I had ever had the choice of finding a

> knowledgeable doctor/therapist less than 250 miles away I think I would

> have avoided the system entirely and paid out of pocket. Not an easy

> decision for any family, but necessary to avoid delays in treatment of a

> suicidal child.

>

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

> kathyh@...

>

> At 02:28 AM 04/09/2000 EDT, you wrote:

> >Thanks Gail! I'm not sure how much else I can ask this " therapist " .

she

> was

> >very vague when I asked about her methods of treatment and her

education.

> >Since she had never heard of E & RP, it raised a red flag and I knew I was

not

> >dealing with the right person for my daughter. I don't know how to go

> about

> >getting my HMO to lat me see someone else. They only have these 2

people

> and

> >they both say they've not heard of E & RP!!

> >I'm still working on all this. I thank you for your input and support.

> >Debbie

>

>

>

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[Guest guest]

Debbie,

Hi, I also had surgery around the time you did. My surgery was the 10th,

were you in the waiting room with Dr. Rutledge getting released on the 10th?

I came up to see the new releases.

anywho...I do feel some of the things you feel. I didn't " bounce " back like

others. I was in pain for several days. I was dehydrated somewhat on the

3rd day and had to go to emergency to have some fluids. I've tried to keep

up on them...it is so hard. My goal is to drink a 1/2 cup every 1/2

hour...tough. I'm just now starting my vitamins and supplements. Dana said

if I started them too soon, I'd be sick. I don't have any problem taking

Pepto Bismol, just taking everything on a schedule is hard for me.

I do get Heartburn around 9 pm and is uncomfortable. I took a little Maloxx

and that helped. I do think it is difficult to watch everyone eat and your

on broth. I just tell myself....It's not forever. Our friends want us over

for a taco party....Man,is it hard!!

I do burp alot too. I have to consciencly (sp?) try not to gulp air when I

eat or drink...I find when I take it real slow, it is better for me. It

also teaches me to eat slower.

If you wanna talk....586-948-3790

DiMusto

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

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[Guest guest]

,

Have you started on the Protonix yet? It really helped with my heartburn

and I stayed on it for 2 months post-op because I had heart burn after I

went off of it after the first month. But after my second post-op month - I

stopped it and have done fine since then.

GOOD LUCK!

Carol H

Michigan

MGB: 01/07/2002 - Dr R

268/190

Re: To Debbie

>

>

>

> Debbie,

>

> Hi, I also had surgery around the time you did. My surgery was the 10th,

> were you in the waiting room with Dr. Rutledge getting released on the

10th?

> I came up to see the new releases.

>

> anywho...I do feel some of the things you feel. I didn't " bounce " back

like

> others. I was in pain for several days. I was dehydrated somewhat on the

> 3rd day and had to go to emergency to have some fluids. I've tried to

keep

> up on them...it is so hard. My goal is to drink a 1/2 cup every 1/2

> hour...tough. I'm just now starting my vitamins and supplements. Dana

said

> if I started them too soon, I'd be sick. I don't have any problem taking

> Pepto Bismol, just taking everything on a schedule is hard for me.

>

> I do get Heartburn around 9 pm and is uncomfortable. I took a little

Maloxx

> and that helped. I do think it is difficult to watch everyone eat and

your

> on broth. I just tell myself....It's not forever. Our friends want us

over

> for a taco party....Man,is it hard!!

>

> I do burp alot too. I have to consciencly (sp?) try not to gulp air when

I

> eat or drink...I find when I take it real slow, it is better for me. It

> also teaches me to eat slower.

>

> If you wanna talk....586-948-3790

>

> DiMusto

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

>

[Guest guest]

,

Yes, I remember you. I sent you an e-mail a few days ago checking on

you, but I never heard back from you. I am glad you are doing better.

It is very hard to get the liquids in. I find that if they are cold I do

better.

Did you have heartburn before the surgery? Does it feel the same? I

have pressure, but it does not hurt. I am glad of that. I hope to not

have that again.

I am so tired of seeing all that yummy food on TV. That is all the

commercials are about. I told my husband that I think my sniffer is

better after surgery. Everything smells so good. I had a little bite of

tomato from my husband's garden and it was so good.

Good to hear from you and please keep in touch. I didn't talk much when

you came up because I just felt like crap, sorry.

Debbie

________________________________________________________________

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[Guest guest]

Debbie,

Well, How is recovery coming along? Is eating getting better for you? It

is for me. July is a very busy month for me..alot of family get-together's,

picnic type things. It's been pretty hard going to those events not being

able to eat those things. Even the smell of food cooking really gets to me.

This is the part of surgery I never expected.

My big goal is to keep liquids going in. It is very hard. I know my body

needs me to drink at least 64 oz....I can bearly get in 24. I pee only 3

times a day, morning, middle of day, and before bed. It can't be good.

You? Let me know.

From: DBR DBR <zideb@...>

Reply-

Subject: Re: To Debbie

Date: Sun, 21 Jul 2002 10:38:42 -0700

,

Yes, I remember you. I sent you an e-mail a few days ago checking on

you, but I never heard back from you. I am glad you are doing better.

It is very hard to get the liquids in. I find that if they are cold I do

better.

Did you have heartburn before the surgery? Does it feel the same? I

have pressure, but it does not hurt. I am glad of that. I hope to not

have that again.

I am so tired of seeing all that yummy food on TV. That is all the

commercials are about. I told my husband that I think my sniffer is

better after surgery. Everything smells so good. I had a little bite of

tomato from my husband's garden and it was so good.

Good to hear from you and please keep in touch. I didn't talk much when

you came up because I just felt like crap, sorry.

Debbie

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

_________________________________________________________________

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[Guest guest]

Urine out put can be a little low. As you are able to take in more liquids,

you want to have your urine to be lighter than tea (not enough fluids) but

not clear (too much fluids). 3-4 times per day is OK at this point unless

you start having some burning, pain on urination, frequent emptying of the

bladder or blood in your urine (signs of an infection) Usually I include

funky or foul odor...but with the surgery, vitamins, etc. it can be kind of

funky smell compared to the normal odor you are used to having. This will

all take care of it self as you get further out with your surgery. When you

get to the point of adding some foods, try watermelon...lots of liquid, not a

lot of pulp after you chew and swallow and you can eat a lot of it and not

feel real full. It will give you extra fluids, especially while we are

experiencing such hot weather.

Hope this helps all the newbies out there!

in SC

Still a newbie...just not as new as some

[Guest guest]

I am curious what my doctor will say when I tell/ask him about trying

Paxil. I have only been to this dr. twice and so far he seems

knowledgable. We will see. As common as the spasm problem seems to

be, you would think he would be aware of all this.

> Hi Kris,

> I think you'll find everyone in here knows exactly what the pain of

> spasms is like. Almost all of us have had the pre or post surgery

or

> dilations or botox treament.

> There are probably just as many ways to help deal with them too.

> Thanks goodness the people are here are more knowledgeable than

most

> of the Dr's that deal with this.

> Deb NJ

[Guest guest]

So if your "E" is really stretched out and you have had several dilation's does that mean you do not have a garden hose but maybe a fire hose??? hmmmmm something to ponder over huh....lol

[Guest guest]

Glad to provide some comic relief, Ann!So, who *is* going to ever look at a garden hose the same way after reading that? LOLDebbi, wondering if maybe I shouldn't have added one of those "Trained Professionals -- do not attempt -- no garden hoses were injured in the making of this message" disclaimers?

Oh Debbie,

I can't stop laughing at your garden hose story. You are so funny !!!!

[Guest guest]

I think we determined that under those circumstances, it's like having an esophagus resembling nylons/pantihose that got all stretched out and just flap in the breeze now.... ;o)

So if your "E" is really stretched out and you have had several dilation's does that mean you do not have a garden hose but maybe a fire hose??? hmmmmm something to ponder over huh....lol

[Guest guest]

Hi Debbie,

Thank you for your input. Sorry for the late replied but had over 300 emails

so I am slowly catching up I think.

Wow, both your brother and you had the implant same day, in the morning and with

the same doctor.

Are you both same age?

What does BEA stands for please?

Dolly Dolphin

Debbie wrote:

Being profoundly deaf from birth and wore the strongest HAs, I was not able

to understand speech or heard many sounds that my HAs did not give me the

ability to hear. Now that I have had my CI for 2 1/2 years, I'm able to

understand speech without lipreading but it is NOT perfect. With my CI, I

consider

myself HOH but without my CI, I consider myself Deaf.

That the same with my brother. We both were implanted on the same morning

by the same surgeon. It has been such a wonderful CI journey that we have

shared.

Debbie

Auria--07/03

Prelingual

BEA Volunteer

[Guest guest]

Hi Debbie,

Thank you for replying to my post -- but now I want to ask you what is a radio

frequency block??? & nbsp; & nbsp; Is it the same procedure- - - - & nbsp;they numb

you, it is not painful????

The epidurals are not painful for me. They just feel like some pressure as they

do it.

The second did not give me any feeling at all--- no real relief and no feelings

of being strong like the first one did.

Thank you,

Annie

[Guest guest]

Hi Debbie,

Thank you for replying to my post -- but now I want to ask you what is a radio

frequency block??? & nbsp; & nbsp; Is it the same procedure- - - - & nbsp;they numb

you, it is not painful????

The epidurals are not painful for me. They just feel like some pressure as they

do it.

The second did not give me any feeling at all--- no real relief and no feelings

of being strong like the first one did.

Thank you,

Annie