What would you do?

March 22, 2000

Hello all,

After reading the recent articles on OCD, it made me think about a mom I know

(not well) who may be a hoarder. I stopped by her

home once unannounced (before Kelsey's OCD onset) and remember being shocked by

the piles of clothing all over the house. This

was way beyond laundry day. The layers looked like they had been added to over

time and I couldn't help but wonder about her

second grade twins living in that mess.

When I think about all the pain and anguish OCD causes a family and what it must

be like to live without a diagnosis, I can't

help but feel like I should speak up, inquire and share our experience. But as

you know it's a sensitive subject...and for all I

know she's in denial. I don't think I would say anything at this point as I

don't associate with her and it was an isolated

experience a year or so ago, but I wonder what I'd do if that happenned today.

In fact, when I went out with a friend recently that I'd lost touch with and

told her about Kelsey's OCD. She recognized the

symptoms as mild OCD she overcame in her childhood. She want on to tell me about

getting over bulimia and then about the recent

surgeries she'd had (tummy tuck, breast enlargements) and braces for her teeth.

Even though I knew her well, I couldn't quite

bring myself to tell her she also likely had BDD and it was all the same family

of disorders. I guess my intuition was that she

wasn't ready to hear it.

Thoughts on this?

in San Diego

March 22, 2000

In a message dated 00-03-22 13:06:33 EST, you write:

<< r she also likely had BDD >>

I am fairly new to the list so I don't have all of the " shortcuts " down yet.

What is BDD?

Thanks!

Elaine-D

March 22, 2000

HI Chris:

This is an excellent question. I work on a university campus next to the

Music building and we share a bathroom with the music people (and others).

There is a music student who has pretty obvious OCD, leaves paper towels

near toilet and door handles, can't touch the door when going in around the

same time as another woman, etc.

My coworkers have told me I should talk to her but she is a complete

stranger. I have not said a word but have a campaign going of smiling in a

friendly way. OCD is a very private matter and I try to respect that.

However if I was already talking to a friend about it and they described

symptoms of a spectrum disorder I don't think pushy me would be able not to

mention that to them. This is because I have seen how stimulating an

OCDer's insight about their symptoms really helps them to control them

better. Perhaps your friend would choose to undergo less plastic surgery.

I have had plastic surgery and it really hurts, so I would think this would

be more of a plus than having to learn to accept another diagnosis.

I am very interested to hear other lister's views on this. Take care,

aloha, Kathy (H)

kathyh@...

At 08:56 AM 03/22/2000 -0700, you wrote:

>From: Roman <chrisroman@...>

>

>Hello all,

>

>After reading the recent articles on OCD, it made me think about a mom I

know (not well) who may be a hoarder. I stopped by her

>home once unannounced (before Kelsey's OCD onset) and remember being

shocked by the piles of clothing all over the house. This

>was way beyond laundry day. The layers looked like they had been added to

over time and I couldn't help but wonder about her

>second grade twins living in that mess.

>

>When I think about all the pain and anguish OCD causes a family and what

it must be like to live without a diagnosis, I can't

>help but feel like I should speak up, inquire and share our experience.

But as you know it's a sensitive subject...and for all I

>know she's in denial. I don't think I would say anything at this point as

I don't associate with her and it was an isolated

>experience a year or so ago, but I wonder what I'd do if that happenned

today.

>

>In fact, when I went out with a friend recently that I'd lost touch with

and told her about Kelsey's OCD. She recognized the

>symptoms as mild OCD she overcame in her childhood. She want on to tell me

about getting over bulimia and then about the recent

>surgeries she'd had (tummy tuck, breast enlargements) and braces for her

teeth. Even though I knew her well, I couldn't quite

>bring myself to tell her she also likely had BDD and it was all the same

family of disorders. I guess my intuition was that she

>wasn't ready to hear it.

>

>Thoughts on this?

>

>in San Diego

March 22, 2000

Hi

I'm a preschool teacher and one of the things I do when I think a child has a

spectrum disorder I make a point of mentioning my own

ADD and sometimes Ava's OCD. This usually generates some questions and it gives

me the opportunity to give more information and

also explain that these disorders run in families. Unfortunately, many parents

are in the denial stage, hoping their child " grows

out of it " , even when there is a history of spectrum disorders in the family.

When this happens I have to accept it, keep open the

lines of communication, and realize that even though no action was taken to

support the child, I am still acting as an advocate by

being part of the process or path towards getting help in the future.

But sometimes parents are very open to learning more about how they can help

their child and then I suggest doctors, books and web

sites. It is very rewarding to be able to give the help to others that was

given to me when I joined this group.

As far as friends and acquaintances go, if I suspect something I often briefly

refer to my own situation, which usually generates

questions or comments, and then I proceed if they are receptive. I ran in to an

acquaintance the other day and we had coffee and

she told me some things about her husband and I ended up telling her I thought

he had Aspergers. I gave her some web sites for him

to research (he's a scientist) and he emailed me, told me that after reading the

material he concurred with my " diagnosis " and

thanked me. My friend said it has changed their lives. I love when that

happens.

I guess the message I try most to get across is that there is hope. If someone

is clearly in a lot of pain I will risk saying " you

don't have to live like this " , if I think it will help. If they obviously don't

want to talk about it I stop.

Dana in NC

Roman wrote:

> From: Roman <chrisroman@...>

>

> Hello all,

>

> After reading the recent articles on OCD, it made me think about a mom I know

(not well) who may be a hoarder. I stopped by her

> home once unannounced (before Kelsey's OCD onset) and remember being shocked

by the piles of clothing all over the house. This

> was way beyond laundry day. The layers looked like they had been added to over

time and I couldn't help but wonder about her

> second grade twins living in that mess.

>

> When I think about all the pain and anguish OCD causes a family and what it

must be like to live without a diagnosis, I can't

> help but feel like I should speak up, inquire and share our experience. But as

you know it's a sensitive subject...and for all I

> know she's in denial. I don't think I would say anything at this point as I

don't associate with her and it was an isolated

> experience a year or so ago, but I wonder what I'd do if that happenned today.

>

> In fact, when I went out with a friend recently that I'd lost touch with and

told her about Kelsey's OCD. She recognized the

> symptoms as mild OCD she overcame in her childhood. She want on to tell me

about getting over bulimia and then about the recent

> surgeries she'd had (tummy tuck, breast enlargements) and braces for her

teeth. Even though I knew her well, I couldn't quite

> bring myself to tell her she also likely had BDD and it was all the same

family of disorders. I guess my intuition was that she

> wasn't ready to hear it.

>

> Thoughts on this?

>

> in San Diego

>

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March 22, 2000

I've mentioned before that my brother in law was diagnosed this past year as

ADD, and is now being treated for this disorder, after I shared my copy of

" Shadow Syndromes " with him and my sister. The rest of the story is I gave

them this book because I was nearly certain my brother in law has ADD. I

had learned about this disorder while getting up to speed about OCD, and in

reading the descriptions and symptom checklists he always popped into my

mind. In this case, sharing my concern worked out well, and maybe is saving

a marriage into the bargain.

But that was family. One of my best friends is a " worrier " and though I

love her dearly sometimes I groan inwardly when a phone call turns out to be

her--she often talks for an hour or more about her worries, asking my advice

and reassurance, etc. After Kel had her onset, I was explaining about OCD

with this friend and she did say she was like that a little. (I think she's

" like that " a lot.) But I get the impression she doesn't care to discuss it

further and I've respected that of course. I have a strong sense it would

strain our friendship if I told her plainly I thought she had OCD.

My thoughts are, I guess, that this is a touchier area than most because it

involves a brain disorder. It is along the lines of discussing concerns

about someone's drinking, which the person may welcome but may just as

easily resent, however well-meant. When I think of how hard Kel works to

hide her symptoms, and she is only 6, I can imagine there are probably many

people with OCD who would be very upset to learn their behaviors had been

noticed. So far, I have only discussed OCD with people who know of Kel's

diagnosis and who have asked me about its symptoms, treatments, etc.

Also, a problem I have after this past year of immersion in OCD, is I see it

everywhere!!

Kathy R. in Indiana

> From: Roman <chrisroman@...>

>

> Hello all,

>

> After reading the recent articles on OCD, it made me think about a mom I

know (not well) who may be a hoarder. I stopped by her

> home once unannounced (before Kelsey's OCD onset) and remember being

shocked by the piles of clothing all over the house. This

> was way beyond laundry day. The layers looked like they had been added to

over time and I couldn't help but wonder about her

> second grade twins living in that mess.

>

> When I think about all the pain and anguish OCD causes a family and what

it must be like to live without a diagnosis, I can't

> help but feel like I should speak up, inquire and share our experience.

But as you know it's a sensitive subject...and for all I

> know she's in denial. I don't think I would say anything at this point as

I don't associate with her and it was an isolated

> experience a year or so ago, but I wonder what I'd do if that happenned

today.

>

> In fact, when I went out with a friend recently that I'd lost touch with

and told her about Kelsey's OCD. She recognized the

> symptoms as mild OCD she overcame in her childhood. She want on to tell me

about getting over bulimia and then about the recent

> surgeries she'd had (tummy tuck, breast enlargements) and braces for her

teeth. Even though I knew her well, I couldn't quite

> bring myself to tell her she also likely had BDD and it was all the same

family of disorders. I guess my intuition was that she

> wasn't ready to hear it.

>

> Thoughts on this?

>

> in San Diego

March 24, 2000

wrote-

|After reading the recent articles on OCD, it made me think about a

mom I know (not well) who may be a hoarder. I stopped by her

|home once unannounced (before Kelsey's OCD onset) and remember being

shocked by the piles of clothing all over the house. This

|was way beyond laundry day. The layers looked like they had been

added to over time and I couldn't help but wonder about her

|second grade twins living in that mess.

|

|When I think about all the pain and anguish OCD causes a family and

what it must be like to live without a diagnosis, I can't

|help but feel like I should speak up, inquire and share our

experience. But as you know it's a sensitive subject...and for all I

|know she's in denial. I don't think I would say anything at this

point as I don't associate with her and it was an isolated

|experience a year or so ago, but I wonder what I'd do if that

happenned today.

Some things to consider to help your friend mentioned above:

Jim Hatton

Weekly support groups for OCD locally

The H-C email list [contact me for more details]

Let me know and I will email you the atricles we use in the H-C group.

Just reading about others who H and C [and understanding you are not

alone] has been very helpful for many [contact me for more details]

jim in san diego

jjmcf@...

March 17, 2001

Dear

Together with the learning curve of dealing with the diagnosis, you

will need to muster the strength to advocate for your son in the

school system. My wife and I have been fairly successful in dealing

with our son's school...but i must say that " friendly pressure " is

required and thatlikely, no one else will do it for you.

Gather information for teachers..and arrange a meeting with all of

your son's. Meet in a group to save time , but be sure to meet with

those who don't make it.

You will be clear that this is " nueuro-biological " and that this is

not a behavoral issue. Be very clear about what your son needs and you

will find that most teachers will bend over backwards to accomodate

your son's needs. Your son will learn (with confidence and your help)

to advocate for himself in TELLING teachers what he needs!

If you haven't already been introduced ...you should check out Cheryl

Pruit's specific work on " Teaching the Tiger " which specifically

addresses OCD/Tourettes in the school system and what these kids need.

As for your insensitive friend, with information she will be

remorseful, but probably not less opinionated!

Make sure you get good rest for yourself!!! With very best wishes

> Hello Friends,

> This past week has been a most difficult one around here. Not only

did the school give standardized tests but, my ocd-tourette son's

teacher gave additional tests in CA History, Math, and Science. The

kids tested in the am and then came back and took additional tests

after lunch. Needless to say, this was stressful on ALL the kids but

tremendously so for my son because we spent many of his non-school

hours studying. He had to take his tests in the library because he

kept making mooing and cat screeching sounds.Most of the kids failed

at least one of the tests so the whole class had to retake some of

them.I spoke to the teacher about the excessive testing but she didn't

seem to think it was too much! (By the way, I am a teacher myself.)

Then, last night this supposedly perfect mom with the perfect straight

A, super athlete, etc. son, called to inform me of how rotten my son

is just because she thought I would want to know! She was helping in

the class (she's one of those mom who hovers and is always there. She

had told my son to stop whatever noise he was making. He looked up at

her and said, " I can't, I have a mental problem. " Well, I guess that

really set her off. So, I told her he has OCD and Tourettes. She is

not a person that I really want to share anything with. She's an

opinionated gossip.

> So, what do all of you do about informing others about your

childrens' OCD, Tourettes, ADD, etc? One teacher told me I should tell

all the parents. I am still digesting 's diagnosis, am trying

to get therapists and doctors, trying to maintan some peace in our

home and normalcy for our other three children, and teach my students.

I am exhausted and just don't feel ready to tell the world about my

son. I want to protect him, of course. I am at a loss. Sorry to be so

long winded. I guess I just needed to vent.

>

> can@c...

March 17, 2001

,

Situations like this make me so angry. Helping out in a class is a

privalege and not an excuse to interfere!! As a teacher, you know

this as well as I do!! Personally, I would inform the classroom

teacher of this breach in confidentiality. The classroom teacher

is responsible for her assistants', and ultimetly, is responsible for

this mothers inapropriate behaviour. When a parent is helping in the

class, they do not have the right to call another parent and 'inform'

on the student. I would insist that this parent no longer have contact

with my child as she shows signs of causing serious harm to your son

and who knows who else!!

About sharing diagnosis, I do inform the classroom teacher and

anyone else that 'needs to know' at the school or activity. As far as

social goes, it really depends. I prefer the 'need to know' rule.

Please keep us posted about this school issue... wendy in canada

=================================================================

>Then, last night this supposedly perfect mom with the perfect

straight A, super athlete, etc. son, called to inform me of how

rotten my son is just because she thought I would want to know! She

was helping in the class (she's one of those mom who hovers and is

always there. She had told my son to stop whatever noise he was

making. He looked up at her and said, " I can't, I have a mental

problem. " Well, I guess that really set her off. So, I told her he has

OCD and Tourettes. She is not a person that I really want to share

anything with. She's an opinionated gossip.

> ... So, what do all of you do about informing others about your

childrens' OCD, Tourettes, ADD, etc? One teacher told me I should tell

all the parents. >

March 18, 2001

HI :

I am so sorry to hear that things have been so rough. So much testing is

too much! What about asking for an accommodation to spread the testing out

over a longer period of time.

Also it must have been so awful to put up with that other mom. What a case

she is, how unkind and clueless.

re: sharing, there are many different approaches on this list. For us

Steve plummeted to earth so spectacularly that keeping things secret was

never an option. I did give information to all his classmates and I also

gave information to all his teachers and the parents of his then-best

friend. Now I tell his friend's parents, Steve has problems with anxiety.

Another reason I do not keep things secret is that Steve has MDD. He has

the top three risk factors for suicide and I figure I need the help of all

around him to intervene as necessary. So all the teachers he has each year

learn about his dxs as early on as possible. I am also open about my own

anxiety problems, GAD (generalized anxiety disorder). My psychologist told

me that keeping things secret interferes with recovery as it encourages

poor coping skills. He works with sex offenders and told me they need to

be open about their problem if they are to recover.

There are people who do not understand and this is most of the world. It

is a lot of work to be open about these mental issues, but how else can we

change stigma, etc. I don't think it is easy to hide Tourettes and ADD,

less possible than OCD probably. When we hide our kid's problems we send

them an unspoken message that we are ashamed of their problems,IMHO, This

is a heavy burden for them to carry.

Strangely enough I have found that most people still do not get it when you

share with them about OCD as it is so non-visible often. So even when they

know they forget about it. Stigma is a reality and I do explain to my

Steve that some people don't know how to handle his diagnoses. He is used

to it a bit from my cancer diagnosis.

Good luck, take care of yourself, aloha, Kathy (h)

kathyh@...

you wrote:

> Hello Friends, to inform me of how rotten my son is just because she

>thought I would want to know! She was helping in the class (she's one of

>those mom who hovers and is always there. She had told my son to stop

>whatever noise he was making. He looked up at her and said, " I can't, I

>have a mental problem. " Well, I guess that really set her off. So, I told

>her he has OCD and Tourettes. She is not a person that I really want to

>share anything with. She's an opinionated gossip. So, what do all of you

>do about informing others about your childrens' OCD, Tourettes, ADD, etc?

>One teacher told me I should tell all the parents. I am still digesting

>'s diagnosis, am trying to get therapists and doctors, trying to

>maintan some peace in our home and normalcy for our other three children,

>and teach my students. I am exhausted and just don't feel ready to tell

>the world about my son. I want to protect him, of course. I am at a loss.

>Sorry to be so long winded. I guess I just needed to vent.

>can@...

March 19, 2001

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

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

> Strangely enough I have found that most people still do not get it when

you

> share with them about OCD as it is so non-visible often. So even when

they

> know they forget about it.

This is the main reason I have given up about sharing Kel's diagnosis with

anyone without an absolute need to know, this includes teachers, new

doctors, etc. I finally recognized that explaining was not having any

benefit to Kellen. I did tell nearly everyone when she was first diagnosed

as there had been such an abrupt change in her, but Kathy H. is right, all

those folks have seemingly forgotten all about it or assume it's over now.

If someone questions a behavior or asks a direct question, I will usually

say Kel gets anxious sometimes or that she tends to get wound up (physically

activated, talks too loud and too fast.) These are things most people can

understand and also the behaviors that people tend to notice. Kel is seven

and I imagine these responses will do for the next few years until or unless

her behavior starts standing out noticeably from her peers'.

Kathy R in Indiana

October 17, 2004

In a message dated 10/17/2004 1:43:05 PM Eastern Standard Time,

writes:

If this was your child, what would you do?

Hi Connie,

I am sooo sorry that you are going through this. I remember so vividly all

of the illnesses and fevers that endured before getting treatment.

Now, you asked " What would YOU do? " So I thought this through. First, I

would check for swollen lymph nodes anywhere on his body. The places to look

are behind his ears, along the jaw line and the neck area (even as far back as

the base of the skull), under his underarms, and along the crook of his legs

in the groin area. Lymph nodes should be pea size or smaller in a child. I

have frequently found swollen nodes on my kids even after my pediatrician

had just checked on them (this is not a slam against my pediatrician, it's just

that I can feel even the slightest differences in my children). The

location of a swollen gland can point you in a general direction of the area

causing

the infection. Marriela, my baby recently developed a large node in her

groin area, two days later she had a massive diaper infection.

If there are no swollen nodes (and there very well may not be), I would take

his temperature every 3 hours and chart it. I have even gone so far as

withholding Tylenol or Advil to get an accurate picture of just how high one of

the kids fevers is really trying to go. Once I get a good idea (like it stays

at 102 for several hours) or if it is shooting up over 103, then I dose them

again with the meds, but now I have the artillary I need (the chart) and the

personal assurance that this is not just a mild temperarture variation.

use to run astonomically high fevers for the slightest things (ear

infections would trigger a 107 temp) but ran no fever for things like a massive

pneumonia. But I could only get the doctor's attention with the " big " numbers

when it came to fevers without a focal point.

If is " acting " sick even when the fever is down, odds are that there

is something going on. If he is acting ok with the meds on board then he

may just have a viral infection which many times can present as just a fever.

Seen this quite a few times. Viruses usually run their course in 7 - 10

days. My Trayvon, who has severe congenital heart defects, ran a fever of over

a

102 for over 8 days. On the 9th day (and after oogles and oogles of blood

work) the doctors were going to admit him and place a PICC line and treat him

for a possible bacterial endocarditis (heart infection). I talked them into

waiting until the next day, and voila, NO MORE FEVER after the 9th night!!!

LOL It was just a virus and the ONLY symptom was a fever.

As to how to deal with all of the recurrent illnesses, I would document,

document, document and fax the immunologist each and every time you see the

pediatrician. Let her see the number of times he is being treated and what he

is

being treated for. Besides that, I don't know what else to say other than

maybe it is time for a second opinion.

Boy, was this long winded! LOL

You and are in my prayers.

Annette

(14.5 yr) Selective Antibody Deficiency, IGG 2 & 4 deficiency, HIV+, CP,

Developmental Delays, G-tube, IVIG x 5 years (total of 10 years - but we

trialed

off for several), Currently mad at mom because I won't let her dye her hair

neon orange.

( 9yo) Previously B & T cell deficiencies, poor antibody response,

brain tumor survivor, severe hearing loss, epilepsy, IVIG x 1 year, now off and

on every other day Zithromax abx prophylaxis. Huge fan of WWE and sweets!

Trayvon (almost 6) Ivemark Syndrome - asplenia, severe congential heart

defects (open heart surgery x 3), malrotated intestines, microcephalic - Could

find fault in God himself if given a few moments alone with him! LOL

Marriela (2 yo), Micro-preemie (26 weeks 1lb 12oz), severe chronic lung

disease, failure to thrive, mild CP, developmental delays, severe food

allergies

(???) currently on a gluten/wheat free, dairy free, soy free diet. Yummy,

yummy. She may be small but she lets you know what she wants!

_www.caringbridge.com/ny/my2angels_

(http://www.caringbridge.com/ny/my2angels)

October 18, 2004

Our clinic does a " Problem List " which is on the front part of their chart.

It lists the dates/symptoms/diagnosis in just a couple of lines. It is a

quick reference and reviewal tool. It really stands out when you see visit

#54 and the child is 18 months. I wish all doctors did this. What you could

do is keep a log in a little note book with just brief notes. I do that on my

PDA now and keep track of which med so I know which ones work better for which

infections. Hope that helps.

February 9, 2005

leave it alone or tell the teacher herself that you know this and she should take care of it.

janeAnne <Lady_Anne76@...> wrote:

What would you do if you had a NT child in a class where the teacher was a really good teacher and your child was doing well, but you found out that her teacher certification was expired?

Anne

February 9, 2005

Hmmm, I think I might leave things the way they are until there is a problem. As long as "you" feel that the teacher is competent and doing the right things for your child then I wouldn't see the harm in it.

.....I am not even sure how I would find out such a thing. How did it come up?

My daughter (4/NT) has a pre-K teacher who is young and is still in school (college) herself, it concerned me a little at the beginning of the year but she is now WONDERFUL with her and is her favorite teacher.