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Hello ,

Have you gone to Dr. Salvato(sp?). I beleive she is in the Dallas area and seems to get very good reviews from her patients. There are a number of members of this list who see her. Her first line treatment seems to be ATP/Glutathione injections.

Regards,

Introduction

Hello,

As requested, I am presenting a brief history for the list.

Newton

>>Snip

Chiropractic practice in Dallas, Tx from 1983 to 1997. Have been on Social Security Disability since May of 1997.

>>Snip

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Hi Liam,

How's the crewchange looking for me to get back to the Alliance? lol

Stuart someone.

> Subject: Introduction

> Date: Sun, 2 Apr 2000 9:14:00 +0000

> From: alliance.medic@...

> ian@...

>

> Hello Ian,

> My name is Liam McNamee, I'm an ex Royal Naval Medic having

> spent nearly 13 years on various ships, I spent 2 years as a dedicated

> SAR Medic at a Naval Air Station in Scotland and also spent 2 years

> with the Royal Marines. I'm working offshore at present on a large

> diving vessel called Alliance although I'm only standing in for

> someone, my permanent ship is the Seawell. Both vessels are run by

> Coflexip Stena Offshore. I would be obliged if you would keep me

> updated at my home email address which is liam102@..., look

> forward to hearing from you.

>

>

>

> cheers

>

>

> Liam

>

>

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Introduction

>

>

> From: " k adams " <mwa@...>

>

> Thankyou Aisha for welcoming me to the group. I hope I am not being

> redundant because I have signed up for a bunch of the groups at this

> site. Thankyou for setting this site up it is great. As I just

> became literate about a month ago about getting around on the

> internet, (And I wouldn't exactly say I am literate), this is the

> first place that I have actually been able to talk with others and

> get info on my disease. At latest diagnosis I was told I have

> microscopic vasculitis. I need to clarify that with dr again. I am

> still fairly ignorant about my disease. I just found out that there

> are actually about10 or so different kinds of the disease. I found

> this through the JOHN HOPKINS SITE. Before this I wasn't even so

> sure I had a disease as I was told by some primary drs that

> vasculitis is just a condition of other diseases and not a disease in

> itself so I have been pretty confused myself. People will say pan or

> wegners.

> My disease started about 3 yrs ago. At first my symptoms were mainly

> joint pain, fevers, just feeling generally crappy. I was told that I

> probably just had a virus or something. I was put on about 8

> different antibiotics. My symptoms just didn't go away. My dr at

> the time was reluctant to send me to a rheumotologist ( I was on hmo

> at the time i am convinced now that is why). She finally sent me to

> pulmonologist when I started to have blood tinged sputum. He did

> bronchoscopy and found a couple of places where i had been bleeding

> from but said " he did not find what he was looking for " . I went to a

> rheumotologist who put me on prednisone. He gave me phamplet on

> wegeners and Pan was very casual about the fact that I had anything.

> acted like it was no big deal told me that more and more people are

> being diagnosed with this. I was fine till he tapered me off of it

> and then my smyptoms came back, so he put me on another round of it

> and same thing happened, but when I went back to him to tell him my

> symptoms had come back. He more or less told me to just take hot

> baths. When I became emotional because it was getting really

> difficult to work and keep my life together he said I just needed to

> get off the prednisone that it was making me emotional. I left there

> feeling like maybe I was just being a big baby or a hypochondric or

> something. I spent about 3 month just trying to survive on Nuprin

> until I couldn't take it anymore.

> I finally found another rheumotologist. His reaction was so

> different he put me on prednisone and methotrexate and this seem to

> do the trick for awhile although I was still having alot of joint

> pain but I was able to function somewhat better. Then after about a

> year of being on that everything seemed to flair up I started to

> couph up a lot of blood, I was getting short of breath, I started to

> bleed from bowels had blood in urine and started to break out with

> spots all over hands and feet. I ended up in bed for 2 weeks and

> symptoms just kept getting worse. I wound Up in the hospital for 2

> weeks last year. I had to be put on oxygen because lungs filled up

> with blood and I had to have a blood transfusion. They started me on

> Iv cytoxan and prednisone. Was on pred for 6mo and getting monthly

> cytoxan. As soon as I got off pred and they reduced cytoxan to every

> 3 mo symptoms returned. So at present I am getting daily cytoxan

> 150mg daily and symptoms have calmed down quite a bit. But I will

> have flare ups on and off where I just have to go to bed for 3 to4

> days at a time. Then it calms down again. So that is where I am at

> now.

> Besides that and when I am feeling somewhat normal I love to garden,

> needle point and just enjoy life. I have a supportive husband and

> two great kids. A daughter 14 and a son 10. I am looking forward to

> the day this disease decides to go away. But, I am also trying to

> accept the fact that is may never go away and that I will have to

> learn to deal with feeling like I am 95 when I am only 40. I also am

> trying not to get depressed about the fact that these drugs could

> give me cancer down the road. The treatment is almost as bad as the

> disease itself. Anyway I hope I have not put you all to sleep with

> my rambling on. Its just that this is the first time I have found a

> place to really vent and share. I look forward to hearing from you

> all Thanks Kellie I hope I didn't send out two posts I think I lost

> the first one so I had to retype I didn't see it on the posting I

> think I lost it when I hit the wrong button. But if I sent two I

> apologize.

>

>

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Oh my!

Kellie when you reposted this I thought was back! I was about to jump up and down and get all excited!!

Good thing I didnt as I'd have looked a right sight! I am wearing my fattie jam bottoms (which are actually my husbands pj pants! LOL) and a shirt which I realised I have on inside out! LOLOL

I'm joining Tina in the migraine stakes today ... ugh....

*hugs to all*

Aisha <------ queen of the sillies!

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oops!!! spasms of the hand I guess.

Re: Introduction

Oh my!

Kellie when you reposted this I thought was back! I was about to jump up and down and get all excited!!

Good thing I didnt as I'd have looked a right sight! I am wearing my fattie jam bottoms (which are actually my husbands pj pants! LOL) and a shirt which I realised I have on inside out! LOLOL

I'm joining Tina in the migraine stakes today ... ugh....

*hugs to all*

Aisha <------ queen of the sillies!

View Members profiles, locations, hobbies and all that plus find out when their birthday are by visiting /files/ Visit The Members Loungehttp://www.elderwyn.com/members

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Hi,

Sorry for the late reply, but welcome. Always nice to see another MI person

here too! I'm glad you enjoy this list and hope you will get some answers.

Take care, Christie

--------

>

>As requested, I am presenting a brief history for the list.

>

> Newton

>

>

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Hi ,

Welcome to the list. I recently joined for support. My son has Burkitt's

Lyphoma. He is currently in remission. I also have some health concerns. I

know you will find what you are looking for here. You couldn't ask for a

better group of people to uplift and support you.

I was desperate to find people to understand how I was feeling. I have found

that here. I know how hard it is to watch you little one go through medical

procedures. It is heartbreaking. I know all about the central line. My son

had one that he recieved his chemo through.

If there is ever anything I can do for you email me. My thoughts are with

you and your family. What is the prognosis for your son?

Love and lots of cyber hugs ((((((((((((((((((HUGS))))))))))))))))))

Mo

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Welcome !

Yes you have found the right place!

I'm really sorry to hear that your child is so ill. That is devistating. In this extended family we also have other mom's whose kiddies are sick - so you are not alone!

Also, we have carers too... for adults. Plus we all understand what it is like to live with illness. Emotions especially. This is a place to share, vent, sware and curse! Yes we also get medical at times, but first and foremost we are a global family.

Glad you found us! Feel free to write what you want (positive/negative - we all have our days!) there is always someone around!

Gotta go.. looking up diseases (lovely way to pass a day!)

Take care and talk as much as you want - and you can write huge long emails - we all do :)

Welcome!

Love Aisha.

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Dear ,

Welcome to the group. I am sure you will find the support and love that you

are looking for from this group. It is a great bunch of people. I believe

that your little boy is very sick and that it must be a horrible strain even

though you love him very much to deal with everyday. I hope that you have

some support so that you can also take care of yourself at times. I

definitely understand what it is like to be sick. And I also understand

what it must be like to take care of others when they are sick. My husband

has had to assume care for me and my children and everything else when I am

sick with my disease and can't do anything. I know this is a horrible extra

strain on him on top of everything else. is my husbands name,

also. Please feel free to share anything. There are both people struggling

with illnesses on here and also people taking care of others dealing with

illnesses, so I think this is a perfect place for you to be. welcome.

Kellie

Introduction

Hello to everyone. Let me first start out by saying that I don't know if

I've found the right place for me or not, but I'm going to give it a

shot. Please accept my apologies in advance if this post runs a bit

long...

I'm here because my 15 month old son, , is a very sick little

boy, and truly, it does SUCK!! A little background on Matty (I'll make

it as brief as possible, but he is a complicated child...)

has several diseases. He has Pearson's Syndrome (a very very

rare mitochondrial disorder), Kearns-Sayre Syndrome (a second

mitochondrial disorder, not quite as rare but still uncommon), Reactive

Airway Disease (almost like asthma, but not quite), Fanconi Syndrome (a

kidney disorder), and Periventricular Leukomalasia (death of brain

tissue).

I know from all of this that it sounds as though I am making it up...no

child could ever be this sick, right?? But I promise you that all of it

is real, he does suffer from all of those diseases...I would never wish

this on anyone, let alone my own child.

was sick from birth, but our pediatrician at that time wouldn't

believe me...so testing didn't begin until Matty was 3 months old and in

full bone marrow failure. His first diagnosis, Pearson's Syndrome, came

at the age of 5 1/2 months, and it's been a full -fledged fight for his

life since then. (In the hopes of keeping this post to a reasonable

length, I won't go into specifics about his diseases now, but I am more

than willing to answer any and all questions).

currently is on a 24 hour IV hookup at home, he has a central

line and a g-tube. He takes 5 IV medications every day, at least 7 oral

(or g-tube) meds everyday, and 2 inhaled meds every day (several times a

day).

is my 4th child, 3 of whom are living. I have a 7 year old

daughter, Adrienne, and a 2 year old daughter, Grace. My first son,

, was premature and died within minutes after birth.

Before got sick, I worked full time outside of the home, and

also went to school pursuing a major in elementary education. Now I

barely have time to shower every day, let alone work or go to school!!

As I said in the beginning of this post, I'm not sure if this is the

right place for me. I'm on a couple of other onelists related

specifically to 's conditions, but I have found that although

they are a wealth of medical and practical advice, the personal aspect

is missing. That's what I'm looking for now, someplace where people can

understand what it's like to be sick, or to care for someone who is ill.

Thank you again for your time and patience with me!!

,

Columbus, Indiana

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" There will always be people who are better off and worse off then you. This

makes no difference to how you are feeling. You are the only one who feels

as you do, and you have every right to be negative or upset when you are

ill, injured, disabled, or caring for someone who is. No one deserves being

sick, it is not fair. " - Aisha.

~~~~~~~~~~~~~~~

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Welcome to the group . If there is ever anything I can do for you

please let me know.

Tina 1

>From: Hyten <whyten@...>

>Reply-egroups

>onelist

>Subject: Introduction

>Date: Thu, 13 Apr 2000 22:59:23 -0700

>

>Hello to everyone. Let me first start out by saying that I don't know if

>I've found the right place for me or not, but I'm going to give it a

>shot. Please accept my apologies in advance if this post runs a bit

>long...

>I'm here because my 15 month old son, , is a very sick little

>boy, and truly, it does SUCK!! A little background on Matty (I'll make

>it as brief as possible, but he is a complicated child...)

> has several diseases. He has Pearson's Syndrome (a very very

>rare mitochondrial disorder), Kearns-Sayre Syndrome (a second

>mitochondrial disorder, not quite as rare but still uncommon), Reactive

>Airway Disease (almost like asthma, but not quite), Fanconi Syndrome (a

>kidney disorder), and Periventricular Leukomalasia (death of brain

>tissue).

>I know from all of this that it sounds as though I am making it up...no

>child could ever be this sick, right?? But I promise you that all of it

>is real, he does suffer from all of those diseases...I would never wish

>this on anyone, let alone my own child.

> was sick from birth, but our pediatrician at that time wouldn't

>believe me...so testing didn't begin until Matty was 3 months old and in

>full bone marrow failure. His first diagnosis, Pearson's Syndrome, came

>at the age of 5 1/2 months, and it's been a full -fledged fight for his

>life since then. (In the hopes of keeping this post to a reasonable

>length, I won't go into specifics about his diseases now, but I am more

>than willing to answer any and all questions).

> currently is on a 24 hour IV hookup at home, he has a central

>line and a g-tube. He takes 5 IV medications every day, at least 7 oral

>(or g-tube) meds everyday, and 2 inhaled meds every day (several times a

>day).

> is my 4th child, 3 of whom are living. I have a 7 year old

>daughter, Adrienne, and a 2 year old daughter, Grace. My first son,

>, was premature and died within minutes after birth.

>Before got sick, I worked full time outside of the home, and

>also went to school pursuing a major in elementary education. Now I

>barely have time to shower every day, let alone work or go to school!!

>As I said in the beginning of this post, I'm not sure if this is the

>right place for me. I'm on a couple of other onelists related

>specifically to 's conditions, but I have found that although

>they are a wealth of medical and practical advice, the personal aspect

>is missing. That's what I'm looking for now, someplace where people can

>understand what it's like to be sick, or to care for someone who is ill.

>

>Thank you again for your time and patience with me!!

>

>,

>Columbus, Indiana

>

>

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Hi aand welcome!! I think you will find that this is the right

place. This group is very caring & understanding & loving,etc.etc. I am so

sorry about your little boy. I hopeyou have good support so you can take

care of yourself also .It is so easy to burnout then you can't take care of

anyone. Hugs ne

>From: " Matt and Kellie " <mwa@...>

>Reply-egroups

>egroups

>Subject: Re: Introduction

>Date: 13 Apr 2000 21:17:57 -0700

>

>Dear ,

>

>Welcome to the group. I am sure you will find the support and love that

>you

>are looking for from this group. It is a great bunch of people. I believe

>that your little boy is very sick and that it must be a horrible strain

>even

>though you love him very much to deal with everyday. I hope that you have

>some support so that you can also take care of yourself at times. I

>definitely understand what it is like to be sick. And I also understand

>what it must be like to take care of others when they are sick. My husband

>has had to assume care for me and my children and everything else when I am

>sick with my disease and can't do anything. I know this is a horrible

>extra

>strain on him on top of everything else. is my husbands name,

>also. Please feel free to share anything. There are both people

>struggling

>with illnesses on here and also people taking care of others dealing with

>illnesses, so I think this is a perfect place for you to be. welcome.

>Kellie

> Introduction

>

>

>Hello to everyone. Let me first start out by saying that I don't know if

>I've found the right place for me or not, but I'm going to give it a

>shot. Please accept my apologies in advance if this post runs a bit

>long...

>I'm here because my 15 month old son, , is a very sick little

>boy, and truly, it does SUCK!! A little background on Matty (I'll make

>it as brief as possible, but he is a complicated child...)

> has several diseases. He has Pearson's Syndrome (a very very

>rare mitochondrial disorder), Kearns-Sayre Syndrome (a second

>mitochondrial disorder, not quite as rare but still uncommon), Reactive

>Airway Disease (almost like asthma, but not quite), Fanconi Syndrome (a

>kidney disorder), and Periventricular Leukomalasia (death of brain

>tissue).

>I know from all of this that it sounds as though I am making it up...no

>child could ever be this sick, right?? But I promise you that all of it

>is real, he does suffer from all of those diseases...I would never wish

>this on anyone, let alone my own child.

> was sick from birth, but our pediatrician at that time wouldn't

>believe me...so testing didn't begin until Matty was 3 months old and in

>full bone marrow failure. His first diagnosis, Pearson's Syndrome, came

>at the age of 5 1/2 months, and it's been a full -fledged fight for his

>life since then. (In the hopes of keeping this post to a reasonable

>length, I won't go into specifics about his diseases now, but I am more

>than willing to answer any and all questions).

> currently is on a 24 hour IV hookup at home, he has a central

>line and a g-tube. He takes 5 IV medications every day, at least 7 oral

>(or g-tube) meds everyday, and 2 inhaled meds every day (several times a

>day).

> is my 4th child, 3 of whom are living. I have a 7 year old

>daughter, Adrienne, and a 2 year old daughter, Grace. My first son,

>, was premature and died within minutes after birth.

>Before got sick, I worked full time outside of the home, and

>also went to school pursuing a major in elementary education. Now I

>barely have time to shower every day, let alone work or go to school!!

>As I said in the beginning of this post, I'm not sure if this is the

>right place for me. I'm on a couple of other onelists related

>specifically to 's conditions, but I have found that although

>they are a wealth of medical and practical advice, the personal aspect

>is missing. That's what I'm looking for now, someplace where people can

>understand what it's like to be sick, or to care for someone who is ill.

>

>Thank you again for your time and patience with me!!

>

>,

>Columbus, Indiana

>

>

>

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

>Chocolate eggs, tulips, bunnies and more...

>Click Here

>1/3120/3/_/817445/_/955685031/

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

>

>~~~~~~~~~~~~~~~

>

>The Being Sick Members Lounge.....

>* FREE counselling via email

>* Daily Horoscopes

>* FREE psychic/tarot readings via email

>* Daily cartoons

>* Members Profiles, locations and birthdays

>* DAILY LIVE CHAT!!

>* Medical Resources, and more.... http://www.elderwyn.com/members

>

>~~~~~~~~~~~~~~~

>

> " There will always be people who are better off and worse off then you.

>This

>makes no difference to how you are feeling. You are the only one who feels

>as you do, and you have every right to be negative or upset when you are

>ill, injured, disabled, or caring for someone who is. No one deserves being

>sick, it is not fair. " - Aisha.

>

>~~~~~~~~~~~~~~~

>

>Your subscription details: /mygroups

>

>

______________________________________________________

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Guest guest

wow......your lil sweetie sure sounds sick...what a stressful situation for

you...your heart must be aching so badly for him. My daugter was born with spina

bifida and had to have surgery at one day old.then for the next 4 months we had

to measure her head daily to watch for hydrocephalus. ....we hd to catherize her

every 6

hours...whether she ws sleeping or not...now we are down to once per day.She's

doing much better and was able to avoid getting a shunt....we still have many

hurdles to overcome. She is unable to walk (age 2 1/2) because she cant weight

bear on her legs. I know first hand the promise to a child to find out all

that I can and do all I

can for her to have the best life possible..it may not be the life that we want

her/him to have...but it will be the best possible....hugs for

..((((hugs)))) and hugs for you for continued strength....lean on

us...when you need an ear or some renewed energy ..ok

Do Drs say what could cause so many problems to occur?

Sheena :)

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  • 3 weeks later...
Guest guest

Welcome Randi in Toronto!!

This is a very informal list, people write with questions, suggestions,

information sharing, and when they need support. Everything goes! I am

proud to say that everyone is welcome! Most of the people are from the

states, but the canadian contingent is growing!

I'm in Ottawa, and boy can I sympathize with the medication and lack of

services!! Are you connected with any toronto services? I can give you some

names if you want. I am interested to learn who you are using for cbt, if

you want to share.

You have proven that cbt is the right way to go when treating ocd.

I have 3 kids with ocd (16,14,10) and finding treatment with cbt/erp has

been very difficult. Fortunatly I am a social worker (youth services) but

unfortunatly, this has not helped us recieve adequate treatment. I ended up

going down to the states to take a course in cbt for ocd using the exposure

and response prevention method. The gov't cut backs to health care, and

especially mental health care, have been disasterous for teens in Ottawa.

(Ironically for you, there is an eating disorder clinic for teens that just

opened here - but you and I both know that Corey doesnt have an eating

disorder, but classical OCD contamination issues!)

I wont get into a political vent - but it is tempting!!

I cant mention this enough - but you must take care of yourself. It is

important to stop and give yourself some ME time. If you are too stressed

out to cope, then the whole family suffers.

Take care, wendy in canada wb4@...

________________________________________________________________________

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Hello,

This site is a support group for parents, If you have questions, or advise

, you are more then welcome to post anytime. Your post goes to everyone on

the list, so you might receive many diffrent answers. My son will be 13 yo

in July, and also has OCD, he has fear of contamination also, with food,

clothing, showering etc. We have just started him in CBT, which is very

rewarding. with very good results. He is also on med. but it never seen to

help him, although I know it takes 10 to 12 weeks to level off in the body,

which seems like forever. I have learned alot from the people on this

list, they have supported me and helped very much, I will forever be

grateful to all of the wonderful people here. I hope that you will find

the same comfort that I have found, just to know you are not alone.

WELCOME you have taken the first step, GOOD LUCK to you and your family,

I know you will gain back control, it just take a very long time and a lot

of learning.

Pat in NJ

----------

> From: Randi Shelson <randishelson@...>

> egroups

> Subject: Introduction

> Date: Friday, May 05, 2000 11:25 AM

>

> Hi! My name is Randi and I have a son with OCD. Corey will be 12 in

> June. He was diagnosed when he was 7 at the Hospital for Sick

> Children in Toronto, Canada. When he was 8 we started him on

> medication and have over the years tried 3 different drugs with

> disastrous results. Corey is now in behavioural therapy and we are

> finally seeing results.

>

> Corey's main concern is with food contamination. He has to examine

> his cutlery, plates, cups and of course his food! His brother, Josh,

> had a bowel disorder and was hospitalized twice when he was younger

> (Josh is now 10). Corey wouldn't let Josh near the food in the

> kitchen (cupboards, fridge)for fear of it getting contaminated. If

> Josh did go to the food area Corey wouldn't eat for days. It has

> been very rough on all of us especially Josh and there is always

> arguing or fighting going on. Recently, through Corey's behavioural

> therapy, he has been letting Josh go to the fridge & cupboards and

> Corey is still eating!!! What a breakthrough.

>

> There are a lot of other obsessions that Corey has but I could write

> forever.

>

> I don't really know how this site works but here I am.

>

> Thanks!

>

> P.S. I thought I had sent a message earlier but it didn't show up so

> I'm sending it again. If it comes out twice...oops..sorry!

>

>

>

> You may subscribe to the OCD-L by emailing listserv@... . In

the body of your message write: subscribe OCD-L your name. The Archives,

Files, and Features List for the may be accessed by

going to , enter your email address and password,

then point and click. Subscription issues, problems, or suggestions may

be addressed to Louis Harkins, list owner, at harkins@... .

>

>

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  • 4 weeks later...
Guest guest

Hi Lee,

My name is Huda, I have also a 16 years ofld son that was diognosed since

more than one year as having OCD. I took him to a doc. who is treating him

since then by medication. My advice to you if you have some doctors who can

treat with herbar medication, & this has to be associated with following a

certain diet, also doing some therapy on him it will be great. I was hoping

that such treatment in our country.

Huda

>From: Lee Roversi <ncfarms@...>

>Reply-egroups

>egroups

>Subject: introduction

>Date: Sun, 28 May 2000 12:42:19 -1000

>

>

>Hello fellow listmates -

>I am Lee, mom to 16 year old son, Sky - who is now in the midst of some

>clear and difficult OCD patterns. I " diagnosed " him myself after extensive

>internet research and after reading Foa's book. There were some indications

>earlier, but, for the most part, his symptoms have come on stronger and

>more frequently only in the past few months.

>

>Mostly, it is obsessional - with some compulsions - but, being a brooder

>and a thinker, it mostly spins around and around in his head, bringing on

>intense anxiety. I'm still researching the best way to deal with it all for

>him.

>

>Any and all suggestions and support are VERY welcome. Now, it is only me

>dealing with him and trying to implement the exercises with him from Foa's

>book - sometimes with results and sometimes not. We have no insurance,

>being self-employed. I am tired and not sure if the steps I am taking are

>appropriate or not.

>

>We prefer to utilize non-allopathic medicine whenever possible- which is

>not to say that I don't recognize the miracles in modern medicine. I do not

>want to offend anyone by stating this outright, but would love to hear

>anyone's experience with working with OCD in an herbal, homeopathic,

>acupuncture etc way.

>

>This is impacting our whole family - two other children and husband and I,

>as well as sweet Sky in ways I know you all can relate to!

>Thanks for listening!

>Aloha, Lee

>North Country Farms

>An Organic Family Farm & Tropical Bed and Breakfast

>http://www.skyfamily.com/northcountryfarms

>P.O. Box 723

>Kilauea, HI 96754

>808-828-1513phone & message machine

>808-828-0805fax

________________________________________________________________________

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Lee:

Boy can I relate to your experience. Both my 11 yo son and 46 yo hubbie are

primarily obsessional OCDers. I find this much harder to deal with than with

compulsions. After 3 years I am still struggling with how to manage ER & P with

obsessions. I am not familiar with homeopathic remedies for OCD, I have to

admit that the SSRIs and new atypical antipsychotics have been a godsend for us.

But, I also know that therapeutic touch has been used with some success in

treating mental illness, and my son LOVED craniosacral therapy. It helped with

relaxation. He also enjoyed treatments from a clinically trained psychologist

in our area who does energy work. Whether this would have been enough, I don't

know . . . I do depend on double insurance to cover therapy and medication. It

doesn't cover alternative therapies which are at least as high as allopathic

treatment. I really would recommend trying TT and/or craniosacral for your son

if you can find a practitioner in your area. An email to the holistic nurses

association might be able to refer you, or Kathy H who also lives on the Big

Island might be able to help.

I have no idea of what kind of public mental health services are available where

you are, but here there are programs that assist those without insurance. In

addition, some of the pharmaceutical companies will provide meds to those with

financial need. I have info on that somewhere. I would also encourage you to

contact your local NAMI group. Again, Kathy H can probably help you -- she is

in Hilo. I know she is involved with the Journey of Hope.

I don't think anyone will be offended by your post. All of us struggle with the

med and treatment issues. I don't think any of us leapt at the chance to put

our kids on drugs that haven't been thoroughly researched in children. I am

fortunate to have a psychiatrist that doesn't dismiss alternative therapies.

I've even discussed herbs with her. She just cautioned against unknown

interactions.

Please continue to share with us your experiences with your son. If you happen

to get this before 4 PM Sun, we are holding a chat at the list

-- sign into onelist and go to . I'm pretty sure that 4 PM Sun

is 10 PM EST. My SIL is in Aiea on Oahu and I call her frequently.

Jule in Cleveland

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Guest guest

HI Lee:

Thank you for introducing Sky and how his OCD is impacting him and your

family. Even if your child is homeschooled he is still eligible for

assistance to pay for mental health services under the Felix consent decree

in Hawai`i. We were paying $4K every month for treatment for Steve after

our insurance had covered the 12 visits he was entitled to each year. Then

we managed to access the care available through the Felix program and it

has made a tremendous difference to us financially. Now we should be able

to afford to send Steve and his older brother to college when the time

comes, we were rapidly heading for bankruptcy before we got help from the

Felix program.

We started out trying complementary approaches such as SJW for obsessions,

valerian for sleeping problems, etc. when we realized Steve was suffering

with his OCD. We had to learn that OCD is a serious problem and luckily

there are good treatments for it. The first line treatment, CBT, is

non-invasive and without side effects. SSRIs have less side effects than

many other medications and these disappear as our kids adjust to the

medication or when they discontinue their meds.

I tried to be a home therapist to Steve and found it was very hard on our

mother-son relationship. We do have parents, mostly of younger kids, who

have been very successful following this path. Dr. Foa's manual is

excellent. I also recommend you get Dr. March and Mulle's book,

" Obsessive Compulsive Disorder in Children and Adolescents " . Their

protocol is the gold standard of CBT treatment for children and youth.

Steve has many obsessions around alternative treatments and this has made

it difficult to assess how helpful these might have been for him.

Relaxation techniques and massage did not help with his OCD at all, in fact

he told me they just made the obsessions come on stronger. Keeping our

kids active, eating healthily, sleeping regularly all help them suffer a

bit less from OCD symptoms but IMO are not sufficient to turn around the

situation.

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

kathyh@...

At 12:42 PM 05/28/2000 -1000, you wrote:

>

>Hello fellow listmates -

>I am Lee, mom to 16 year old son, Sky - who is now in the midst of some

>clear and difficult OCD patterns. I " diagnosed " him myself after extensive

>internet research and after reading Foa's book. There were some indications

>earlier, but, for the most part, his symptoms have come on stronger and

>more frequently only in the past few months.

>

>Mostly, it is obsessional - with some compulsions - but, being a brooder

>and a thinker, it mostly spins around and around in his head, bringing on

>intense anxiety. I'm still researching the best way to deal with it all for

>him.

>

>Any and all suggestions and support are VERY welcome. Now, it is only me

>dealing with him and trying to implement the exercises with him from Foa's

>book - sometimes with results and sometimes not. We have no insurance,

>being self-employed. I am tired and not sure if the steps I am taking are

>appropriate or not.

>

>We prefer to utilize non-allopathic medicine whenever possible- which is

>not to say that I don't recognize the miracles in modern medicine. I do not

>want to offend anyone by stating this outright, but would love to hear

>anyone's experience with working with OCD in an herbal, homeopathic,

>acupuncture etc way.

>

>This is impacting our whole family - two other children and husband and I,

>as well as sweet Sky in ways I know you all can relate to!

>Thanks for listening!

>Aloha, Lee

>North Country Farms

>An Organic Family Farm & Tropical Bed and Breakfast

>http://www.skyfamily.com/northcountryfarms

>P.O. Box 723

>Kilauea, HI 96754

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  • 2 weeks later...
Guest guest

Hi :

Welcome to the list and thanks for introducing your family. It sounds like

you really have your hands full.

We also had to deal with the death of a beloved pet with our son, Steve.

His " therapy " cat, Tilly, was run over by a car. I always worried this

might happen as she was extra clueless about traffic, however we could not

sentence her to a life indoors. She was with Steve during his recovery

from OCD and he loved her dearly and slept with her often and cuddled with

her and enjoyed unconditional love from her.

When she died we all cried and grieved a long time. I would start sobbing

everytime I ran by the corner where she died for weeks. Steve sobbed and

howled and I held him for hours till he fell asleep exhausted. We asked

him what he wanted to do with her and he asked to have her cremated and we

have her in a beautiful wooden box with her name engraved on a copper

plate. Also his CBT therapist gave him a cat-shaped pewter frame for her

picture which rests next to the box. We let him grieve as long as he

wanted and spoke about her, her short life and how happy she had been

exploring in the yard and with his constant love and care. After about six

months we got a replacement kitten but she has not been the same. We also

have Tilly's brother and he is our #1 cat who gives Steve a lot of love, as

well as the whole family.

Steve has a lot of death-related OCD issues so we used the death as a form

of flooding. It was hard to see him so upset but he learned a lot from

this experience. Good luck to your family in coping with the loss of

Gizmo. Take care, aloha, Kathy (H)

kathyh@...

At 11:56 PM 8/10/00 -0400, you wrote:

>Hi all,

>

>I am new to the list so I thought that I would introduce myself. My name is

> and I have 4 kids, including a set of Identical Twin boys , one of

>which is my OCD child, Jake. Jake and his co-twin Sam were preemies, on

>vents - blah, blah, blah. After taking Jake to a Hot Shot Pedi Urologist at

>age 4 because of his repetitive bathroom habits we discovered that what he

>really needed was a Pedi Psych. Thus his diagnosis was made and medication

>and therapy begun. It is important to note that Sam does not have OCD but

>perhaps that is partially due to the fact that he had Bacterial Meningitis

>at 2 and had a stroke. Sam is our state's poster child for the Epilepsy

>Foundation for this year -- so he is 'special' too.

>

>The boys are 9 years old now and Jake is fully aware of his O's but it is

>his C's wherein his problems lie. His " need " to touch whatever his twin

>brother is touching unfortunately resulted in the death of their beloved

>hamster Gizmo on Tuesday of this week. Jake reached up to touch Gizzy when

>Sam was putting him back in his cage and he knocked the hamster to the floor

>hitting a table and breaking the hamster's neck on the way down. I was not

>at home when this happened thus I received a hysterical phone call from my

>older son who was giving said hamster mouth to mouth to try and keep him

>alive.. Sadly the vet had to put Gizmo to sleep. JAKE IS DEVASTATED!!!

>Broken belongings and missed opportunities we have been able to work through

>with Jake, but the death of his much loved hamster seems to be

>insurmountable. Gizmo, the hamster, was played with daily by the boys. He

>loved to ride around in their shirt pockets and would even come when the

>boys called him. He was truly a friend to them. Jake has been so

>depressed. He keeps and keeps repeating the phrase " I can't believe I killed

>Gizmo " and the tears begin again. My husband is a physician and he finally

>medicated Jake yesterday so that he could get some sleep.

>

>

>I would love any suggestions that any of you may have to help us through

>this crisis. It breaks my heart to see one of my " babies " so upset.

>

>TIA,

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  • 1 month later...
Guest guest

Welcome, Melinda!!!! Sorry to hear what you are going through! I'm Alison and

I also suffer from depression. I have bad Anxiety, Linear Morphia

Scleroderma(supposedly), GERD, TMJ and am addicted to chocolate.

hehehe...Actually, other than the depression I am ok. I also have a best

friend who had a double organ transplant so I am learning about other things

along those lines. I hope you enjoy our list! :o)

^,,^

>:<

**** @lison

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  • 5 weeks later...

Hi , it is great to have you on the list. It sounds like you

have a great family and alot to be proud of amid the challenges. I am

sorry to hear about the tragic death of your boys pet. It was truly

an accident and I hope that your son and his brothers can get through

this with compassion and grace. We never know why things turn out the

way they do and it must be so hard on your son. Our OCD er is so

sensitive that it makes things more difficult. That is hard in a

situaition such as what your family is going through. I would give

the hamster a proper burial and not hold anyone responsible. Can your

children see having another hamster or is it too soon? We had a

similar situaion here with the Classs pet that we kept one summer. It

was in the house on the floor in a roam ball. Our daught er was not

being attentive and the dog pawed the hamster to death. It was very

tramatic. We couldn't get in touch iwth the teacher so we went out to

try and find a replacement. It turns out when school started the

teacher decided to not have pets so we ended up with 'Gus' until his

passing.It was hard on us all but the one who was responsible took it

the hardest. Time heals. My heart goes out to your family in the loss

of your pet. Vivian in wa.st.

> Hi all,

>

> I am new to the list so I thought that I would introduce myself.

My name is

> and I have 4 kids, including a set of Identical Twin boys ,

one of

> which is my OCD child, Jake. Jake and his co-twin Sam were

preemies, on

> vents - blah, blah, blah. After taking Jake to a Hot Shot Pedi

Urologist at

> age 4 because of his repetitive bathroom habits we discovered that

what he

> really needed was a Pedi Psych. Thus his diagnosis was made and

medication

> and therapy begun. It is important to note that Sam does not have

OCD but

> perhaps that is partially due to the fact that he had Bacterial

Meningitis

> at 2 and had a stroke. Sam is our state's poster child for the

Epilepsy

> Foundation for this year -- so he is 'special' too.

>

> The boys are 9 years old now and Jake is fully aware of his O's but

it is

> his C's wherein his problems lie. His " need " to touch whatever his

twin

> brother is touching unfortunately resulted in the death of their

beloved

> hamster Gizmo on Tuesday of this week. Jake reached up to touch

Gizzy when

> Sam was putting him back in his cage and he knocked the hamster to

the floor

> hitting a table and breaking the hamster's neck on the way down. I

was not

> at home when this happened thus I received a hysterical phone call

from my

> older son who was giving said hamster mouth to mouth to try and

keep him

> alive.. Sadly the vet had to put Gizmo to sleep. JAKE IS

DEVASTATED!!!

> Broken belongings and missed opportunities we have been able to

work through

> with Jake, but the death of his much loved hamster seems to be

> insurmountable. Gizmo, the hamster, was played with daily by the

boys. He

> loved to ride around in their shirt pockets and would even come

when the

> boys called him. He was truly a friend to them. Jake has been so

> depressed. He keeps and keeps repeating the phrase " I can't believe

I killed

> Gizmo " and the tears begin again. My husband is a physician and he

finally

> medicated Jake yesterday so that he could get some sleep.

>

>

> I would love any suggestions that any of you may have to help us

through

> this crisis. It breaks my heart to see one of my " babies " so upset.

>

> TIA,

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, I wish I could help. The death of a pet is so very hard on kids. The

only thing I can think of is to explain to him that he didn't kill Gizmo,

hamsters can survive falls with ease. Hitting the table is what killed

Gizmo, it was an accident, a fluke, and there was nothing he could have done

about that. If it hadn't have been for the table Gizmo would have been

stunned for a second and then would have been fine. The only thing that will

really help is time, he has to get his grieving behind him. Poor kid! On

another note, my son with OCD is also a preemie, he was born 15 weeks early.

We had a discussion on another list I'm on for older kids who were born

premature about OCD behavior. I was surprised to find that it is not

uncommon. Hope Jake starts feeling better soon.

Vicki

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Hi ,

I'm glad that you and your family have joined our community.

Years ago we had hampsters ( Yogi and ?, I can't remember the other name; onset of oldtimer's disease) for our boys and they lived their normal lifespan of about two years. Our hampsters died within days of each other and we had a burial service for each. Each of my sons spoke at the burial of each of their hampsters and were encouraged to talk about their feelings and their hampsters. Their words were profound as a quiet simplicity so often is and their healing was genuine as they were able to speak to their hampsters "one more time". Later we had a class pet, a hairless rat, who lived her full life and died. We had a similar experience as we buried Harriett and their words and tears brought healing. You may want to have a burial or memorial service for Gizmo and encourage Jake and Sam to participate. If you do so it will be important to encourage everyone to understand that what happened to Gizmo was an accident for which no reason exists and for which no blame is due.

You may want to get Jake and Sam their own hampsters (no sharing) and keep them in separate cages (we tried putting two in one and the hampsters did not get along well at all). After our hampsters died we got the boys a dog, J, who is still with us and has given more to our family than we can ever repay. Dogs and boys are a good mix in every way.

Take care and keep us posted.

Louis

harkins@...

Introduction

Hi all,I am new to the list so I thought that I would introduce myself. My name is and I have 4 kids, including a set of Identical Twin boys , one ofwhich is my OCD child, Jake. Jake and his co-twin Sam were preemies, onvents - blah, blah, blah. After taking Jake to a Hot Shot Pedi Urologist atage 4 because of his repetitive bathroom habits we discovered that what hereally needed was a Pedi Psych. Thus his diagnosis was made and medicationand therapy begun. It is important to note that Sam does not have OCD butperhaps that is partially due to the fact that he had Bacterial Meningitisat 2 and had a stroke. Sam is our state's poster child for the EpilepsyFoundation for this year -- so he is 'special' too.The boys are 9 years old now and Jake is fully aware of his O's but it ishis C's wherein his problems lie. His "need" to touch whatever his twinbrother is touching unfortunately resulted in the death of their belovedhamster Gizmo on Tuesday of this week. Jake reached up to touch Gizzy whenSam was putting him back in his cage and he knocked the hamster to the floorhitting a table and breaking the hamster's neck on the way down. I was notat home when this happened thus I received a hysterical phone call from myolder son who was giving said hamster mouth to mouth to try and keep himalive.. Sadly the vet had to put Gizmo to sleep. JAKE IS DEVASTATED!!!Broken belongings and missed opportunities we have been able to work throughwith Jake, but the death of his much loved hamster seems to beinsurmountable. Gizmo, the hamster, was played with daily by the boys. Heloved to ride around in their shirt pockets and would even come when theboys called him. He was truly a friend to them. Jake has been sodepressed. He keeps and keeps repeating the phrase "I can't believe I killedGizmo" and the tears begin again. My husband is a physician and he finallymedicated Jake yesterday so that he could get some sleep.I would love any suggestions that any of you may have to help us throughthis crisis. It breaks my heart to see one of my "babies" so upset.TIA, You may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. The Archives, Files, and Features List for the may be accessed by going to , enter your email address and password, then point and click. Subscription issues, problems, or suggestions may be addressed to Louis Harkins, list owner, at harkins@... .

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Have you seen this report, It is not dated March 9 though

http://www.dallasnw.quik.com/cyberella/Anthrax/Anthrax_report_text.htm

This site may contain a link to the same one, but is a pdf file

http://www.house.gov/reform/ns/reports/subcommittee_reports.htm

Introduction

> Hello,

>

> I am new to this listserv. I have a son in the military and am very

> concerned about the anthrax vaccine. I have been writing to my senators

and

> representatives about this issue. I recently received a reply that

> contained this message: ... " the House Government Reform Committee

released

> a comprehensive report on March 9, 2000, finding that the anthrax vaccine

is

> potentially unsafe and calling for further investigation. " I would like a

> copy of this report but am having difficulty locating it. Any help would

be

> appreciated.

>

> Sincerely,

>

> Joyce Hinkson

> ________________________________________________________________________

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

>

>

>

>

>

> Our Anthrax information web site: http://www.dallasnw.quik.com/cyberella/

> To visit Dr. Meryl Nass's web site, go to: http://www.anthraxvaccine.org

> Also visit: http://www.MajorBates.com/ and http://www.enter.net/~jfsorg/

> http://www.jamesmadisonproject.org/importantlinks.html and

http://www.aboutanthrax.org

> Contact list owner: Gretchen Whitney at: anna_nim@...

>

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Hi and welcome to the list.

I don't think you should worry so much about Africa, well I guess it depends

what area.

I also grew up there - in South Africa, and my family also live there. My

sister is still there and has a 3 year old who has not been vaxed against

anything and is doing just fine.

As far as travel - another friend just went there, and was not asked the vax

status of her baby on either end of the trip.

Just be sure to find out what epidemics or whatever are going on before you

leave, and just be careful about what you eat and drink - I am sure it would be

fine.

Good Luck

Chelly

Mommy to Trenton 8/19/99 & 11/16/88

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:

I empathize with you and your situation with the hamster. A book that your boys

may find helpful is The 10th Good Thing About Barney, about a little boy whose

cat dies. While it is unlikely to help the guilt your son feels, it is

wonderful at describing how this little boy comes to terms with the death of a

beloved pet.

Jule in Cleveland

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