New Member

[Guest guest]

Hi Nick's Mom!

I'm Deena... one of Nick's friends. I've heard a lot about you. Welcome to

the group :-) If you have any cute or embarrassing stories about Nick, feel

free to pass them along my way lol.

Deena

[Guest guest]

Welcome Ruth. My name is Kimi and I'm 26 and have SMA 2. I also am trached

and have a vent, but do not need it 24/7 all the time. I'm in grad school

getting my masters in Bioethics. I also have a g/j tube and eat by mouth. I

live w/my mom and step father and recieve 16 hrs of nursing a day and 8 hrs of

PCA care /week. As you probably know theres a nursing shortage, so I do not

always have the " 16 hrs/day " of care. I also have a sister nonaffected, stay

active w/friends, and have a boyfriend. I think I have emailed Nick, but have

never heard back from him personally. Again, welcome.

Kimi

In a message dated 5/17/2005 1:25:23 PM Eastern Daylight Time,

belasco@... writes:

SMA Friends-

I am the mother of two sons, Nick (23) and (21) who live with a

profoundly disabling neuromuscular disease. Both are students at the college

where I

am a professor. Nick is a member of and is an advocate for

healthcare reform. and Nick are on 24-hr-a-day ventilation, are tube-fed

(Nick eats dinner in addition to tube-feeding), and can move very little. They

each have home nursing care for 16 hrs-a-day, if everything is going according

to plan. I take care of for the uncovered 8 hrs-a-day and my disabled

mother provides care for the 8 hours at Nick that Nick doesn't have a nurse.

In addition to my work as the parent of two very medically fragile young men,

I am a full-time professor of art and I do art myself.

I have fibromyalgia (at least, that is my diagnosis - it seems that

fibromyalgia is a diagnosis that covers a wide range of related ailments) and

usually

have flare ups when I am the most stressed physically and emotionally. In

other words, when I need strength the most, I usually also have to deal with

dibilitatating pain and fatigue!

My family has the most bizarre daily life of any American family I know.

It's so weird that we laugh about it ourselves - sometimes hysterically! For

instance, we had a house fire two years ago. Many house fires come from burning

candles or cooking, but ours was the result of lightning striking a neighbor's

chain-link fence, then traveling down the metal fencing to our fence, where

it jumped to our gas meter where it ruptured the gas line, causing a fire that

ignited the outside siding. The electricity from the lightning continued into

our house via the gas line, blew out my heating/air conditioning unit, my

mother's heating/air conditioning unit, my gas stove ignition, and ruined

several

other electrical devices. Even I don't believe it. When the firemen came

into the house, they were confused out what to do about Nick and being on

ventilators, so they started jerking tubes out of places and running around and

shouting at us and each other. I had to run from one son's room to the other

son's room, trying to keep the firemen from hurting the guys.

Anyway, I am glad to be part of this group. Nick and have some of the

same issues as people with SMA, and I think that I can learn a lot from you.

Ruth

[Guest guest]

hi ruth!

i'm so glad you joined us! i'm alana, nick's berkeley friend. you made a

middle-of-the-night phone call to a neighbor on my behalf one night. yes,

this disability life has some very strange twists. and how weird that fire

was!! i'm glad you were all ok!...scary! i am truly amazed that you do

all that you do, and i'm very pissed off that you all don't get adequate

support from the state. those nursing agencies can be lousy. they suck up

the profits leaving low wages for often unreliable and inflexible

nurses. with your own disability it's soooo much. my sister has

fibromyalgia, as have many of my friends and clients over the years. what

do you do to stay healthy and rejuvenate? does your art help? it's

beautiful, by the way. nick showed me some on the web.

welcome!

alana

[Guest guest]

At 09:56 AM 6/2/2005, you wrote:

>Hi Everyone - I am new to this group and am so excited to have found a

>group that fits my interests so well. I have been studying

>aromatherapy for a few years, and am currently taking the course by

>the Atlantic Institute of Aromatherapy, but the more I get into it the

>more I am interested in perfumery.

Hi

Welcome. You might want to check out a recent article by me on

http:aromaticsage.com -- it's about the evolution of aromatherapists into

natural perfumers :-) There are one or two factual errors in it that the

editor didn't get to yet, but otherwise it's OK. I think, LOL.

>I have made a few oil based

>perfumes, and have had various personal blends over the years. Now I

>want to make alcohol based perfumes. I bought some Everclear, but I

>wonder if there is something better and maybe less stinky? Any

>feedback would be appreciated.

Depends what state you're in. Depends if you check the archives, or Cat

chimes in with her oft-quoted 'soften the harsh alcohol' post. I always

tell newbies to search the archives. This is in the archives on a regular

basis. How to search them is in the welcoming statement you got, and also

in a post in the Files section.

>Also, I need little perfume bottles, maybe 1/3 oz. I'm looking for

>something simple - I've seen fancy ones for sale, but I can't seem to

>find a standard bottle to start with. If it goes against the list-

>policy to post back on this, I would greatly appreciate a personal

>email - kathrynthorn@...

Check the Links section -- many suppliers are listed there.

You will learn a lot here - it's like a freebie course in natural

perfumery. Have fun and start blending :-)

Anya

http://anyamccoy.com

" Always do right. This will gratify some people and astonish the rest. "

Mark Twain

[Guest guest]

> Hi Everyone - I am new to this group and am so excited to have found a

> group that fits my interests so well. I have been studying

> aromatherapy for a few years, and am currently taking the course by

> the Atlantic Institute of Aromatherapy, but the more I get into it the

> more I am interested in perfumery. I have made a few oil based

> perfumes, and have had various personal blends over the years. Now I

> want to make alcohol based perfumes. I bought some Everclear, but I

> wonder if there is something better and maybe less stinky? Any

> feedback would be appreciated.

Hi :

Welcome to the group! Here is some information I posted previously (Anya:

would it be possible to include this information in the group's files?):

Everclear is distilled from grain (usually corn). Unlike other alcohols, it

is not refined a further step by filtering and aging in charcoal. This

additonal process removes fusel oils which come over in the distilling

process. These are what gives it the harsh, " rocket fuel " quality and

consequently, can affect your delicate perfumes.

Alcohol by it's very nature makes a good, albeit fleeting perfume base. The

addition of fixatives like benzoin and glycerine reduce the evaporation

rate, helping the scents last longer on the skin.

Here is how I prepare alcohol for perfumes:

1 liter grain alcohol (190 proof, or 95%)

1 cup activated charcoal (the kind used for aquariums and the like)

Mix the alcohol with the charcoal and rebottle. Seal and let stand 1-2

months, shaking occasionally. Pour off the alcohol, filtering it through a

paper coffee filter (this can be packed with fresh charcoal if desired)

inside a funnel. Let the alcohol stand for a few hours and carefully decant

the liquid from any sediment.

To this, add:

1 gram benzoin resin

1 gram tolu balsam

1/2 gram frankincense resin

1 ounce glycerine

This is allowed to steep for 1 month, then it is filtered and re-bottled.

Perfumes have the highest concentration of scent, I use 1 part fragrance or

essential oil blend to 4 parts alcohol. I don't add water to these.

Eau de Toilette: 1 part fragrance oil to 5 parts alcohol, 1/2 to 1 part

distilled water

Colognes are lighter...I use 1 part fragrance oil to 6-8 parts alcohol, 2-4

parts distilled water

Splashes or Eau Fraiche are the lightest, and I use 1 part fragrance to 10

parts alcohol, 5-10 parts distilled water

The oils are mixed completely with the alcohol. The room temperature

distilled water is very slowly (almost drop by drop), stirring constantly.

If clouding occurs, let the mixture stand a few days to see if it will

clear...if not, add small amounts of alcohol to the mixture until it clears.

The perfumes are then aged in a dark area for a several weeks before final

bottling.

Hope this helps! :-)

Cat

[Guest guest]

At 04:47 PM 6/2/2005, you wrote:

>Welcome to the group! Here is some information I posted previously (Anya:

>would it be possible to include this information in the group's files?):

Hi Cat

I just looked in the Files section -- I could have sworn it was there. Just

a month or so ago, i cut and pasted a lot of your old posts on this,

including the info found here, in reply to a similar question. I'll go look

for it and put it in the Files section. In the meantime, anyone interested

can search the archives. Or read what you just posted :-) but IIRC the

posts around then had other good info in them.

Anya

http://anyamccoy.com

" Always do right. This will gratify some people and astonish the rest. "

Mark Twain

[Guest guest]

At 04:47 PM 6/2/2005, you wrote:

>(Anya:

>would it be possible to include this information in the group's files?):

I had a quick look, but don't have the time to cut and paste for the files

section right now (a volunteer would be appreciated.)

Recent posts will lots of great information include posts # 6044, 6032

(info on cloudiness, too), Dec. 7-14 had a lot of posts (too many post #s

to copy.) Cat has, in the past, provided a wealth of information on how to

deal with stinky alcohol, and that naturally led to questions of filtering

alcohol, softening it, etc. I think, but I'm not sure, that those posts

cover it all. Dorothy of Kingsbury also helped a lot with info. If I've

forgotten anybody, chime in.

Anya

http://anyamccoy.com

" Always do right. This will gratify some people and astonish the rest. "

Mark Twain

[Guest guest]

Welcome, Nikos

It's nice to have you with us.

I believe you have to be a member of to be able to access archives. In

other words, you can sign up on any list, but there is a place to

'join' as well.

I just searched around and I'll be darned if I can find where/how to join;

that may be because I'm already a member.

Perhaps if you go here:

http://www./

you will be able to find how to become a member---maybe you could

click on " my " and see if that works.

Good luck to you

Sharon

From: <RUNIKOS@...>

>

> Greetings from Greece

>

> I would just like to thank you for the welcome and ask a few things about

> the forum. It's quite possible that most of my questions have already been

> answered so I think that I should have a look at the archives. How do I

> get there?

> At: oxyplus the top left menu seems to be

> dead. It seems that I'm not yet recognized as a member. Is there something

> that I should do about it?

>

> I'm thinking of making a steam sauna + ozone. Can I do it with a simple

> ozonator (not a medical one - air input not oxygen input) or the results

> will be insignificant?

>

> Regards

> Nikos Runikos@...

[Guest guest]

Hi Amnesty (love that name!),

I have 3 sons, one diagnosed with OCD and also Aspergers; he's 16.

Just my personal opinions here. I know that very young kids can be

diagnosed with OCD, but not " how young. " I'm sure some child might

be diagnosed at age 3. I think with kids very young, the hard thing

is to decide if it's just one of their particular " toddler stages "

and something that might pass. I can imagine your wondering what

with OCD in the family already. And toddlers can have the most

extreme tantrums anyway. And many can get easily

agitated/frustrated when things aren't " their way " even when playing

with toys.

One of my other sons displayed total OCD behaviors around that age

for a few weeks and I thought I'd go a bit insane then, LOL!. He

had to have things " perfect " , have me walk into the room and go this

way/that way (what he was telling me to do) " just right " or he'd be

stomping his feet, crying and wanting me to go back out the room and

start over. Could NOT have a wrinkle in his " blanket " that he liked

to lie down on, would be crying and crying while trying to smooth it

out perfectly before he would lie on it. Luckily that passed for

him.

My OCD son's problems began at the beginning of 6th grade. It

seemed he suddenly had OCD compulsions 24/7! However, he had OCD

tendencies younger than that. He used to trace over & over letters

when he'd write, ask me lots of questions repeatedly that I later

learned could be a type of " OCD reassurance " questions (will this

give me cancer? how long until this heals?). The earlier behaviors

were more annoying than a problem though. He was also very bright

in areas but behind in motor skills. Even back then he would do

some things and " autistic trait " would pass through my mind. But he

seemed more normal than autistic, except for what I called " common

sense " ; he was too logical for common sense!

Whether it's a stage or possible OCD, you can still treat " either "

as OCD and work on it.

At least with your knowledge of autism, you'll ahead of the game in

that area. I can see why you're wondering about it also.

Well, got to get to work. Hope to hear more from you!

single mom, 3 sons

, 16, with OCD, dysgraphia and Aspergers

, 16 - twin (not identical_

Randall, 10

> Hi, my name is Amnesty, and I have one son, age 21 months. I want

to

> know how young children can be dx'd with OCD, or if there are

> parents who saw warning signs in their kids when they were very

> young.

> My husband, his sister and mom, and my sister and brother are all

> OCD to varying degrees. My husband and in-laws are all on various

> medications to help them, my brother is mild enough to manage

> without meds, and my sister needs them but has not started yet,

> although she wants too.

> Things I have noticed with Rory are stopping to touch the same

> places on the walls in the mall, needing his animals to be

standing

[Guest guest]

I am new to the group and looking forward to sharing what I know, and

of course to be enlightened. I have been working with both essential

oils and fragrance oils (it's a good way to learn inexpensively..) and

want to have a fragrance line in the future.

I am excited to see that there is this group, as I have a been a

member of the Cosmetic lab for some time, but they do not deal with

fragrance.

Beth

Hi Beth.

Welcome to the group. It's a tremendous thing to have this connection to

people with this somewhat rare interest. Perfume making is a road less

traveled and I've never actually met another perfumer in person. So it's

good to have a group like this.

What kinds of fragrances do you like to blend?

Don't forget to read the message archive. Lots of insight and inspiration

here.

Terry

Dragonfly Aromatics

_____

[Guest guest]

Hi, Amnesty. Like I am not sure how old a child must be to be

diagnosed. I do know that my youngest daughter, who was diagnosed at seven,

came out

of the womb with OCD and it took us a long time to figure it out! She did

not do the same things your son does but looking back, we know that it was OCD.

My older daughter was not diagnosed until she was eleven and she really took

us by surprise. Like your family, the gene pool for OCD is pretty thick with

us but we didn't realize what was wrong with the grown ups until the kids were

diagnosed! The psychologist I see knew her own daughter had OCD by the time

the child was 18 months old. Dr. M. recognized it and began treating Ava for

it at that time. I would continue to watch your son if I were you. I agree

with that it might be a toddler thing but that it could very well be OCD.

If it is OCD, Rory is lucky that you are aware of what is going on. Kelley

in NV

[Guest guest]

Hi Amnesty, and welcome! You know, there's a big difference LOL between

having OCD, and being dxed with OCD. Yes a 21-month-old child can have OCD,

lots of us in hindsight can look back and see clear symptoms (that we didn't

recognize at the time) of OCD in our children since diagnosed with the

disorder.

My daughter's history is similar to your son's, bright and advanced. At 14

months, each day after breakfast when I would get her down from her high

chair, she would make a beeline to the dining room and circle the table

there, tapping each corner. She didn't seem distressed or anxious, but

still I couldn't distract her from doing this no matter what I tried after I

got her out of the high chair. After a couple of months it faded, then she

seemed fine and I thought no more about it until 4 years, 11 months when she

had an overnight onset of severe, no kidding OCD. She's 11 now, stabilized

on meds and a veteran of CBT/ERP, and doing well.

Finding a doctor who is comfortable diagnosing OCD in such a young child

might be difficult, though. OTOH since you are more or less in the field,

maybe you know a pdoc who would evaluate your son. Young kids frequently

have rituals and routines that lead to self-confidence and mastery, so some

or all of his behavior could be developmentally appropriate. I think this

may keep some doctors from feeling comfortable making a firm dx at a very

young age such as your son's. A lot would depend I think on how distressed

he is by the compulsive behaviors, or how anxious he is when prevented from

doing them. Some doctors avoid " labeling " children with any disorder at

young ages.

You could, given his strong family history and the compulsive behaviors

you've noticed, assume that he does have OCD tendencies and use ERP

strategies to combat them. For example, you could play a " game " with him

that gets easier each time he plays it: challenge him to touch a different

spot at the mall, or others in addition to the one he always touches. Or

you could put one stuffed animal in a different position than the " right "

one, ( " Oops! The giraffe is standing on his head!) and so on. Most of this

would be done in the moment as behaviors you suspect of being compulsive

arise.

If you are married to an OCDer and are related to that many other ones, I'm

sure you recognize the behaviors! If it turns out your son does have

diagnosable OCD, it should be a comfort to know that many of us have found

out the earlier the treatment, the better the outcome.

Just some thoughts, I'm sorry you are having this worry with your precious

son.

Take care,

Kathy R. in Indiana

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

From: " Amnesty " <amnestyb@...>

..

> Hi, my name is Amnesty, and I have one son, age 21 months. I want to

> know how young children can be dx'd with OCD, or if there are

> parents who saw warning signs in their kids when they were very

> young.

> My husband, his sister and mom, and my sister and brother are all

> OCD to varying degrees. My husband and in-laws are all on various

> medications to help them, my brother is mild enough to manage

> without meds, and my sister needs them but has not started yet,

> although she wants too.

> Things I have noticed with Rory are stopping to touch the same

> places on the walls in the mall, needing his animals to be standing

> certain ways, getting very agitated if he wants a toy to do

> something it doesn't do (beyond " normal " agitation), and other odd

> little things, like the way he holds crayons.

> In most ways, Rory is way advanced for his age. His language is

> around a 36 month level, maybe more. He met the kindergarten

> requirements at 16 months, except for skipping, lol.

> I'm a behavior consultant for kids with autism, so some days between

> that and my numerous relatives with ASD and OCD, I think I am

> looking for signs, or imagining a problem where there isn't one, but

> then my mom came out to visit us a few weeks ago, and SHE saw it

> too, so I know I'm not totally crazy!

> Amnesty

[Guest guest]

I'm not worried about getting a diagnosis really, just wanted to

know if other people have seen early warning signs. And maybe I am

just reading into it too much, today we went to the mall, and they

had a big display thing set up in the middle, right in the way of

his first " spot, " he did sort of a double take, veered in the other

direction, and didn't touch any of them! First time ever, lol.

Since I work with ASD kids, and most of them have some OCD

behaviors, I automatically do things like rearragning his toys, or

going in different entrances to the mall, etc.

Thanks,

Amnesty

> Hi Amnesty, and welcome! You know, there's a big difference LOL

between

> having OCD, and being dxed with OCD. Yes a 21-month-old child can

have OCD,

> lots of us in hindsight can look back and see clear symptoms (that

we didn't

> recognize at the time) of OCD in our children since diagnosed with

the

> disorder.

>

> My daughter's history is similar to your son's, bright and

advanced. At 14

> months, each day after breakfast when I would get her down from

her high

> chair, she would make a beeline to the dining room and circle the

table

> there, tapping each corner. She didn't seem distressed or

anxious, but

> still I couldn't distract her from doing this no matter what I

tried after I

> got her out of the high chair. After a couple of months it faded,

then she

> seemed fine and I thought no more about it until 4 years, 11

months when she

> had an overnight onset of severe, no kidding OCD. She's 11 now,

stabilized

> on meds and a veteran of CBT/ERP, and doing well.

>

> Finding a doctor who is comfortable diagnosing OCD in such a young

child

> might be difficult, though. OTOH since you are more or less in

the field,

> maybe you know a pdoc who would evaluate your son. Young kids

frequently

> have rituals and routines that lead to self-confidence and

mastery, so some

> or all of his behavior could be developmentally appropriate. I

think this

> may keep some doctors from feeling comfortable making a firm dx at

a very

> young age such as your son's. A lot would depend I think on how

distressed

> he is by the compulsive behaviors, or how anxious he is when

prevented from

> doing them. Some doctors avoid " labeling " children with any

disorder at

> young ages.

>

> You could, given his strong family history and the compulsive

behaviors

> you've noticed, assume that he does have OCD tendencies and use

ERP

> strategies to combat them. For example, you could play a " game "

with him

> that gets easier each time he plays it: challenge him to touch a

different

> spot at the mall, or others in addition to the one he always

touches. Or

> you could put one stuffed animal in a different position than

the " right "

> one, ( " Oops! The giraffe is standing on his head!) and so on.

Most of this

> would be done in the moment as behaviors you suspect of being

compulsive

> arise.

>

> If you are married to an OCDer and are related to that many other

ones, I'm

> sure you recognize the behaviors! If it turns out your son does

have

> diagnosable OCD, it should be a comfort to know that many of us

have found

> out the earlier the treatment, the better the outcome.

>

> Just some thoughts, I'm sorry you are having this worry with your

precious

> son.

>

> Take care,

> Kathy R. in Indiana

>

> ----- Original Message -----

> From: " Amnesty " <amnestyb@y...>

> .

> > Hi, my name is Amnesty, and I have one son, age 21 months. I

want to

> > know how young children can be dx'd with OCD, or if there are

> > parents who saw warning signs in their kids when they were very

> > young.

> > My husband, his sister and mom, and my sister and brother are all

> > OCD to varying degrees. My husband and in-laws are all on various

> > medications to help them, my brother is mild enough to manage

> > without meds, and my sister needs them but has not started yet,

> > although she wants too.

> > Things I have noticed with Rory are stopping to touch the same

> > places on the walls in the mall, needing his animals to be

standing

> > certain ways, getting very agitated if he wants a toy to do

> > something it doesn't do (beyond " normal " agitation), and other

odd

> > little things, like the way he holds crayons.

> > In most ways, Rory is way advanced for his age. His language is

> > around a 36 month level, maybe more. He met the kindergarten

> > requirements at 16 months, except for skipping, lol.

> > I'm a behavior consultant for kids with autism, so some days

between

> > that and my numerous relatives with ASD and OCD, I think I am

> > looking for signs, or imagining a problem where there isn't one,

but

> > then my mom came out to visit us a few weeks ago, and SHE saw it

> > too, so I know I'm not totally crazy!

> > Amnesty

[Guest guest]

My daughter is now 4 but we started asking questions at 15 months - she had a

lot of behaviors that we knew weren't quite right. She has had a formal

diagnosis of OCD for about 18 months now. Our pediatrician told us that most

3-4 year olds have ocd behavior - part of being a toddler - but there is a line

- we were fortunate - our pediatrician was willing to diagnose at such an early

age - she has been on zoloft for about 18 months and ithas made a world of

difference -we still have ups and downs and see a behavior specialist and child

psychologist regularly but we are making progress.

-------------- Original message --------------

I'm not worried about getting a diagnosis really, just wanted to

know if other people have seen early warning signs. And maybe I am

just reading into it too much, today we went to the mall, and they

had a big display thing set up in the middle, right in the way of

his first " spot, " he did sort of a double take, veered in the other

direction, and didn't touch any of them! First time ever, lol.

Since I work with ASD kids, and most of them have some OCD

behaviors, I automatically do things like rearragning his toys, or

going in different entrances to the mall, etc.

Thanks,

Amnesty

> Hi Amnesty, and welcome! You know, there's a big difference LOL

between

> having OCD, and being dxed with OCD. Yes a 21-month-old child can

have OCD,

> lots of us in hindsight can look back and see clear symptoms (that

we didn't

> recognize at the time) of OCD in our children since diagnosed with

the

> disorder.

>

> My daughter's history is similar to your son's, bright and

advanced. At 14

> months, each day after breakfast when I would get her down from

her high

> chair, she would make a beeline to the dining room and circle the

table

> there, tapping each corner. She didn't seem distressed or

anxious, but

> still I couldn't distract her from doing this no matter what I

tried after I

> got her out of the high chair. After a couple of months it faded,

then she

> seemed fine and I thought no more about it until 4 years, 11

months when she

> had an overnight onset of severe, no kidding OCD. She's 11 now,

stabilized

> on meds and a veteran of CBT/ERP, and doing well.

>

> Finding a doctor who is comfortable diagnosing OCD in such a young

child

> might be difficult, though. OTOH since you are more or less in

the field,

> maybe you know a pdoc who would evaluate your son. Young kids

frequently

> have rituals and routines that lead to self-confidence and

mastery, so some

> or all of his behavior could be developmentally appropriate. I

think this

> may keep some doctors from feeling comfortable making a firm dx at

a very

> young age such as your son's. A lot would depend I think on how

distressed

> he is by the compulsive behaviors, or how anxious he is when

prevented from

> doing them. Some doctors avoid " labeling " children with any

disorder at

> young ages.

>

> You could, given his strong family history and the compulsive

behaviors

> you've noticed, assume that he does have OCD tendencies and use

ERP

> strategies to combat them. For example, you could play a " game "

with him

> that gets easier each time he plays it: challenge him to touch a

different

> spot at the mall, or others in addition to the one he always

touches. Or

> you could put one stuffed animal in a different position than

the " right "

> one, ( " Oops! The giraffe is standing on his head!) and so on.

Most of this

> would be done in the moment as behaviors you suspect of being

compulsive

> arise.

>

> If you are married to an OCDer and are related to that many other

ones, I'm

> sure you recognize the behaviors! If it turns out your son does

have

> diagnosable OCD, it should be a comfort to know that many of us

have found

> out the earlier the treatment, the better the outcome.

>

> Just some thoughts, I'm sorry you are having this worry with your

precious

> son.

>

> Take care,

> Kathy R. in Indiana

>

> ----- Original Message -----

> From: " Amnesty " <amnestyb@y...>

> .

> > Hi, my name is Amnesty, and I have one son, age 21 months. I

want to

> > know how young children can be dx'd with OCD, or if there are

> > parents who saw warning signs in their kids when they were very

> > young.

> > My husband, his sister and mom, and my sister and brother are all

> > OCD to varying degrees. My husband and in-laws are all on various

> > medications to help them, my brother is mild enough to manage

> > without meds, and my sister needs them but has not started yet,

> > although she wants too.

> > Things I have noticed with Rory are stopping to touch the same

> > places on the walls in the mall, needing his animals to be

standing

> > certain ways, getting very agitated if he wants a toy to do

> > something it doesn't do (beyond " normal " agitation), and other

odd

> > little things, like the way he holds crayons.

> > In most ways, Rory is way advanced for his age. His language is

> > around a 36 month level, maybe more. He met the kindergarten

> > requirements at 16 months, except for skipping, lol.

> > I'm a behavior consultant for kids with autism, so some days

between

> > that and my numerous relatives with ASD and OCD, I think I am

> > looking for signs, or imagining a problem where there isn't one,

but

> > then my mom came out to visit us a few weeks ago, and SHE saw it

> > too, so I know I'm not totally crazy!

> > Amnesty

Our list archives, bookmarks, files, and chat feature may be accessed at:

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[Guest guest]

I have an advantage, lol, I am a behavior specialist! I feel the

same way about his " quirks, " they are sort of like typical toddler

behaviors, but just a little over the line. Some days a LOT over the

line!

Amnesty

> > Hi Amnesty, and welcome! You know, there's a big difference LOL

> between

> > having OCD, and being dxed with OCD. Yes a 21-month-old child

can

> have OCD,

> > lots of us in hindsight can look back and see clear symptoms

(that

> we didn't

> > recognize at the time) of OCD in our children since diagnosed

with

> the

> > disorder.

> >

> > My daughter's history is similar to your son's, bright and

> advanced. At 14

> > months, each day after breakfast when I would get her down from

> her high

> > chair, she would make a beeline to the dining room and circle

the

> table

> > there, tapping each corner. She didn't seem distressed or

> anxious, but

> > still I couldn't distract her from doing this no matter what I

> tried after I

> > got her out of the high chair. After a couple of months it

faded,

> then she

> > seemed fine and I thought no more about it until 4 years, 11

> months when she

> > had an overnight onset of severe, no kidding OCD. She's 11 now,

> stabilized

> > on meds and a veteran of CBT/ERP, and doing well.

> >

> > Finding a doctor who is comfortable diagnosing OCD in such a

young

> child

> > might be difficult, though. OTOH since you are more or less in

> the field,

> > maybe you know a pdoc who would evaluate your son. Young kids

> frequently

> > have rituals and routines that lead to self-confidence and

> mastery, so some

> > or all of his behavior could be developmentally appropriate. I

> think this

> > may keep some doctors from feeling comfortable making a firm dx

at

> a very

> > young age such as your son's. A lot would depend I think on how

> distressed

> > he is by the compulsive behaviors, or how anxious he is when

> prevented from

> > doing them. Some doctors avoid " labeling " children with any

> disorder at

> > young ages.

> >

> > You could, given his strong family history and the compulsive

> behaviors

> > you've noticed, assume that he does have OCD tendencies and use

> ERP

> > strategies to combat them. For example, you could play a " game "

> with him

> > that gets easier each time he plays it: challenge him to touch

a

> different

> > spot at the mall, or others in addition to the one he always

> touches. Or

> > you could put one stuffed animal in a different position than

> the " right "

> > one, ( " Oops! The giraffe is standing on his head!) and so on.

> Most of this

> > would be done in the moment as behaviors you suspect of being

> compulsive

> > arise.

> >

> > If you are married to an OCDer and are related to that many

other

> ones, I'm

> > sure you recognize the behaviors! If it turns out your son does

> have

> > diagnosable OCD, it should be a comfort to know that many of us

> have found

> > out the earlier the treatment, the better the outcome.

> >

> > Just some thoughts, I'm sorry you are having this worry with

your

> precious

> > son.

> >

> > Take care,

> > Kathy R. in Indiana

> >

> > ----- Original Message -----

> > From: " Amnesty " <amnestyb@y...>

> > .

> > > Hi, my name is Amnesty, and I have one son, age 21 months. I

> want to

> > > know how young children can be dx'd with OCD, or if there are

> > > parents who saw warning signs in their kids when they were very

> > > young.

> > > My husband, his sister and mom, and my sister and brother are

all

> > > OCD to varying degrees. My husband and in-laws are all on

various

> > > medications to help them, my brother is mild enough to manage

> > > without meds, and my sister needs them but has not started yet,

> > > although she wants too.

> > > Things I have noticed with Rory are stopping to touch the same

> > > places on the walls in the mall, needing his animals to be

> standing

> > > certain ways, getting very agitated if he wants a toy to do

> > > something it doesn't do (beyond " normal " agitation), and other

> odd

> > > little things, like the way he holds crayons.

> > > In most ways, Rory is way advanced for his age. His language is

> > > around a 36 month level, maybe more. He met the kindergarten

> > > requirements at 16 months, except for skipping, lol.

> > > I'm a behavior consultant for kids with autism, so some days

> between

> > > that and my numerous relatives with ASD and OCD, I think I am

> > > looking for signs, or imagining a problem where there isn't

one,

> but

> > > then my mom came out to visit us a few weeks ago, and SHE saw

it

> > > too, so I know I'm not totally crazy!

> > > Amnesty

>

>

>

>

> Our list archives, bookmarks, files, and chat feature may be

accessed at: / .

> Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto

Wagner, Ph.D., ( http://www.lighthouse-press.com ). Our list

moderators are Birkhan, Castle, Fowler, Kathy

Hammes, Joye, Kathy Mac, Gail Pesses, and Kathy

. Subscription issues or suggestions may be addressed to

Louis Harkins, list owner, at louisharkins@y... ,

louisharkins@h... , louisharkins@g... .

>

>

>

>

>

>

>

[Guest guest]

Welcome Aboard!!! Amnesty <amnestyb@...> wrote:

Hi!My name is Amnesty, and I am an ABA consultant. I'm hear to offeradvice as well as get new ideas. In this feild, there is always newinfo and I try to keep up the best I can.I am also a mom, to one little boy, age 22 months and NT, except for afew possible early warning signs of OCD.I'm looking forward to getting to know all of you :)Amnesty

[Guest guest]

Welcome! I'm glad you've joined us, but sorry you had to. We have many

members with RA, so you are in good company. Thank you for sharing!

Hugs,

New member

Hey there everyone! My name is Sara and I am a new member to the

group so I thought I'd introduce myself.

I'm a 38 yr old WAHM in Houston, Texas. I have severe rheumatoid

arthritis. I love spending time with my family, learning about new

things, reading, watching movies, and getting to know new people. I

personally feel that health and family are the most important things in

life; we just need to have the information necessary to make the best

choices for us.

I'm hoping I can find some good information, insight, and advice here

so that I can increase my knowledge and make better decisions for

myself and my family. I'd also like to meet some like-minded people.

Hope everyone is doing well and I look forward to getting to know you!

~Sara

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[Guest guest]

> Lee Anne - hi welcome. My daughter is also 10, also has the

hypermobility

> (ehlers danlos variant). Also has migraines (usually sinus related

but one

> or two for unknown reason). Macey also didn't mount to the tetanus

but the

> rebooster helped and she's covered now. Pneumococcal is still poor

but she

> receives the IgG replacement and does well with a daily antibiotic.

>

> Again welcome.

Hi Ursala,

Thanks for the welcome! We expect to hear his post vaccination titre

results the end of this week. We saw his allergist on Friday who

decided in light of the IgG and antibody results we already have and

the fact that his last two asthma flares in Aprila and May seemed to

respond to the nebulized TOBI 300 that we should move ahead and make an

appointment for the immuno clinic, which we did for August 24 I think.

I wondered if you knew could there be a correlation between s

abnormal bleeding time and suspected platlet dysfunction and an immune

deficiency?

Thanks,

Lee Anne

[Guest guest]

I use a SOAP format and can usually keep it to 1 page. I've never had a request for anything more or anything different nor have I ever had anyone denied because of what I wrote unless I didn't recommend them for the surgery. My note goes to the surgeon and into the final file that their office files with the 3rd party payer.

Bev

New Member

Good Morning,

My name is Felicia Cordier, and I am new to the field of Bariatric nutrition. I started my own (very small) consulting business prompted by a move to ville after living in Gainesville most of my adult years. It turned out to be a great move. I currently contract to a physician in ville, Florida, who afforded me this great learning experience.

I have been reading the messages for about a month now, and have learned so much from everyone. Thanks for that. I do have a question aimed at those who are in private practice. One of my duties is to write a "letter" to the insurance companies stating whether or not a patient meets the medically necessary criteria for weight loss surgery. So, I would like to know if anyone out there has the same duty and could share with me their format for the evaluation and/or the report that goes to the insurance company. Seeing that my learning curve is high with this field, I have tried many formats, but seem to make it too complicated. Any help would be most appreciated.

I hope someday soon I'll know enough to share...

Thanks,

Felicia P. Cordier, RD

[Guest guest]

Hi Felicia,

We use the EPIC computer charting system. But I've attached a copy of our initial assessment.

(Note: any of the blue sections with numbers indicates that there are quick options...see the corresponding lists below. Any time you see a "***" that means you can free text any specific quotes from the patient.) Hopefully it will give you some direction.

Let me know if you have any questions...

M. Roy, RD, LD

St. 's/Duluth Clinic Health System 400 East Third Street Duluth, MN 55805 (218) 786-3143 hroy@...

-----Original Message-----From: Bevlyann [mailto:bevlyann@...]Sent: Monday, July 25, 2005 8:50 AM Subject: Re: New Member

I use a SOAP format and can usually keep it to 1 page. I've never had a request for anything more or anything different nor have I ever had anyone denied because of what I wrote unless I didn't recommend them for the surgery. My note goes to the surgeon and into the final file that their office files with the 3rd party payer.

Bev

New Member

Good Morning,

My name is Felicia Cordier, and I am new to the field of Bariatric nutrition. I started my own (very small) consulting business prompted by a move to ville after living in Gainesville most of my adult years. It turned out to be a great move. I currently contract to a physician in ville, Florida, who afforded me this great learning experience.

I have been reading the messages for about a month now, and have learned so much from everyone. Thanks for that. I do have a question aimed at those who are in private practice. One of my duties is to write a "letter" to the insurance companies stating whether or not a patient meets the medically necessary criteria for weight loss surgery. So, I would like to know if anyone out there has the same duty and could share with me their format for the evaluation and/or the report that goes to the insurance company. Seeing that my learning curve is high with this field, I have tried many formats, but seem to make it too complicated. Any help would be most appreciated.

I hope someday soon I'll know enough to share...

Thanks,

Felicia P. Cordier, RD

[Guest guest]

Thank you for your helpful response. Do you have your soap in the

form of a check sheet? What verbage do you use for surgery

approval? Thanks again.

Felicia.

> I use a SOAP format and can usually keep it to 1 page. I've never

had a request for anything more or anything different nor have I

ever had anyone denied because of what I wrote unless I didn't

recommend them for the surgery. My note goes to the surgeon and

into the final file that their office files with the 3rd party payer.

>

> Bev

> New Member

>

>

> Good Morning,

>

> My name is Felicia Cordier, and I am new to the field of

Bariatric nutrition. I started my own (very small) consulting

business prompted by a move to ville after living in

Gainesville most of my adult years. It turned out to be a great

move. I currently contract to a physician in ville, Florida,

who afforded me this great learning experience.

>

> I have been reading the messages for about a month now, and have

learned so much from everyone. Thanks for that. I do have a

question aimed at those who are in private practice. One of my

duties is to write a " letter " to the insurance companies stating

whether or not a patient meets the medically necessary criteria for

weight loss surgery. So, I would like to know if anyone out there

has the same duty and could share with me their format for the

evaluation and/or the report that goes to the insurance company.

Seeing that my learning curve is high with this field, I have tried

many formats, but seem to make it too complicated. Any help would

be most appreciated.

>

> I hope someday soon I'll know enough to share...

>

> Thanks,

> Felicia P. Cordier, RD

>

>

>

[Guest guest]

Hi, this is the form we use to send to insurance companies. Feel free to take ideas from it.

cordier <cordier@...> wrote:

Good Morning,

My name is Felicia Cordier, and I am new to the field of Bariatric nutrition. I started my own (very small) consulting business prompted by a move to ville after living in Gainesville most of my adult years. It turned out to be a great move. I currently contract to a physician in ville, Florida, who afforded me this great learning experience.

I have been reading the messages for about a month now, and have learned so much from everyone. Thanks for that. I do have a question aimed at those who are in private practice. One of my duties is to write a "letter" to the insurance companies stating whether or not a patient meets the medically necessary criteria for weight loss surgery. So, I would like to know if anyone out there has the same duty and could share with me their format for the evaluation and/or the report that goes to the insurance company. Seeing that my learning curve is high with this field, I have tried many formats, but seem to make it too complicated. Any help would be most appreciated.

I hope someday soon I'll know enough to share...

Thanks,

Felicia P. Cordier, RD__________________________________________________

[Guest guest]

No, it is mostly free text except the O section. I can attach a sample, if you send me your private email address.

New Member> > > Good Morning,> > My name is Felicia Cordier, and I am new to the field of Bariatric nutrition. I started my own (very small) consulting business prompted by a move to ville after living in Gainesville most of my adult years. It turned out to be a great move. I currently contract to a physician in ville, Florida, who afforded me this great learning experience.> > I have been reading the messages for about a month now, and have learned so much from everyone. Thanks for that. I do have a question aimed at those who are in private practice. One of my duties is to write a "letter" to the insurance companies stating whether or not a patient meets the medically necessary criteria for weight loss surgery. So, I would like to know if anyone out there has the same duty and could share with me their format for the evaluation and/or the report that goes to the insurance company. Seeing that my learning curve is high with this field, I have tried many formats, but seem to make it too complicated. Any help would be most appreciated.> > I hope someday soon I'll know enough to share...> > Thanks,> Felicia P. Cordier, RD> > >

[Guest guest]

Missy-

I would have let you know about this sooner, but the email was down most of

last week. Is it ok if I take of 1/2 day on August 16th? I have to register

for class.

Thanks, Hunter

Re: New Member

Thank you for your helpful response. Do you have your soap in the form of a

check sheet? What verbage do you use for surgery approval? Thanks again.

Felicia.

> I use a SOAP format and can usually keep it to 1 page. I've never

had a request for anything more or anything different nor have I ever had

anyone denied because of what I wrote unless I didn't recommend them for the

surgery. My note goes to the surgeon and into the final file that their

office files with the 3rd party payer.

>

> Bev

> New Member

>

>

> Good Morning,

>

> My name is Felicia Cordier, and I am new to the field of

Bariatric nutrition. I started my own (very small) consulting business

prompted by a move to ville after living in Gainesville most of my

adult years. It turned out to be a great move. I currently contract to a

physician in ville, Florida, who afforded me this great learning

experience.

>

> I have been reading the messages for about a month now, and have

learned so much from everyone. Thanks for that. I do have a question aimed

at those who are in private practice. One of my duties is to write a

" letter " to the insurance companies stating whether or not a patient meets

the medically necessary criteria for weight loss surgery. So, I would like

to know if anyone out there has the same duty and could share with me their

format for the evaluation and/or the report that goes to the insurance

company.

Seeing that my learning curve is high with this field, I have tried many

formats, but seem to make it too complicated. Any help would be most

appreciated.

>

> I hope someday soon I'll know enough to share...

>

> Thanks,

> Felicia P. Cordier, RD

>

>

>

[Guest guest]

Welcom ,

My name is and I have an almost three year old, , who we

don't have a firm diagnosis for yet...have gone from one diagnosis to

another...it's been very frustrating. We just returned from Cincinatti

children's and are awaiting more test results..There are so many

wonderful people here who truly understand what you are going

through...I'm glad that I met these people and have had the fortitude to

seek other opinions regarding our son.

Welcome!

S

New Member

My name is , and my husband Vlad and I have a 3 year old son,

who has X-SCID. He had 2 BMTs at Duke and has normal T-cell

function, but no B-cell function. I administer SCIG weekly at home.

I'm a member of another support group, but wanted to join this one for

a broader scope of discussion. I'm currently searching the archived

posts. Thanks.

This forum is open to parents and caregivers of children diagnosed with

a Primary Immune Deficiency. Opinions or medical advice stated here are

the sole responsibility of the poster and should not be taken as

professional advice.

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