Update (long)

May 29, 2000

In a message dated 5/29/00 11:01:29 AM Central Daylight Time,

clayvon@... writes:

> TTM is part of the picture now too. It

What is TTM?

May 29, 2000

In a message dated 5/29/00 3:01:06 PM Central Daylight Time,

clayvon@... writes:

> TTM is Trichotillomania, compulsive hair pulling.

OK, I have seen it as Trich but not TTM thanks ... my son has this ... no

eyelashes or eyebrows and a hairline that is higher in back than it should be.

May 29, 2000

TTM is Trichotillomania, compulsive hair pulling.

mom2tazbug@... wrote:

> In a message dated 5/29/00 11:01:29 AM Central Daylight Time,

> clayvon@... writes:

>

> > TTM is part of the picture now too. It

> What is TTM?

>

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September 15, 2002

Hi Jen.

> I'm new here but just wanted to say that I'm

> sorry for everything you went through. I have had

> a colonoscopy in the past and also ended up

> severely dehydrated from it. The headache you had

> might have also been from the dehydration. I

> couldn't walk at all to get the test I was so

> sick from the stuff they made me drink. But boy,

> was I cleaned out!!

The preparation was horrible. When I was first admitted and told them I

could not drink the Fleet because of my migraine, they went away then

came back and told me they would have to cancel my tests and reschedule

it for two days later and I went off my head at them and yelled that I

would most likely have a migraine then too after drinking two litres of

Colonlytely two days after I just did. That was when they gave me the

injection of ondansetron and then the Fleet. On the pamphlet that comes

with Fleet it said to have a few glasses of water after the Fleet but

the nurses gave me no water and I was not able to get it myself.

> I had also had an endoscopy prior to that and I

> became extremely agitated from the sedative they

> used... I was cursing and thrashing around like a

> psycho from it. Of course the tests were normal

> like everything else. I was diagnosed with CFS

> and FM at the time but found out last year it was

> actually Lyme Disease with co-infections. Doing a

> lot better now on treatment for it. (You might

> want to go to my site at

> http://www.geocities.com/peace_4_you/cfids/ and

> read up on it. Tests aren't reliable so even if

> you tested negative it doesn't matter.)

I will read your site. I started to get the CFS symptoms when I was

twelve shortly after going on a five month trip around the world with my

father. I have been tested for mono and for Ross River Virus (mosquito

borne disease here that produces CFS-like symptoms) and always test

negative. It gets very frustrating when all tests come back negative. If

my illness really is in my head then I wish somebody would try to fix my

head. My psychologists say that my illness is not in my head but the

medical doctors say it must be since there is no test results to show it.

> Anyway, I'm glad you made it through. I don't

> know if I understood correctly, but it sounded

> like your HHA left you high and dry? That's

> terrible. I've heard bad things about HHA's... I

> was a HHA briefly before the Lyme (I didn't know

> it was Lyme at the time) totally disabled me many

> years ago.

What is a HHA?

> I hope you feel better soon.

I feel much better now than I did after the colonoscopy. I have been run

off my feet caring for my budgies (which now number six).

> PS. I love your nickname... Creepy Zucchini!! :-D

It came about because there were some rotting in my then-roommate's

fridge and I could not think of anything for a ID.

CZ

September 16, 2002

CZ, Boy have I missed you!! My brother asks about you all the time. I also had a colonoscopy recently, and I also had the migrane from being so dehydrated. I would've killed for some water that day. The colonoscopy showed nothing wrong, but I continue to bleed. At this point, the doctors are telling me "we don't know, leave us alone". I have an endoscopy scheduled for later this month. If you are still interested in helping with the group webpage, please let me know. I've been trying to get it done for ages, and still haven't. This is only if you *want* to though. Take care, CZ. Hugs,

Mays

Group Owner

"People helping people"

1599 South Novato blvd. Novato CA 94947 USA

415-328-6330

handd1@...

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September 16, 2002

Don & wrote:

>

> CZ,

>

> Boy have I missed you!! My brother asks about you all the time. I also

> had a colonoscopy recently, and I also had the migrane from being so

> dehydrated. I would've killed for some water that day. The colonoscopy

> showed nothing wrong, but I continue to bleed. At this point, the

> doctors are telling me " we don't know, leave us alone " . I have an

> endoscopy scheduled for later this month. If you are still interested in

> helping with the group webpage, please let me know. I've been trying to

> get it done for ages, and still haven't. This is only if you *want* to

> though. Take care, CZ.

>

> Hugs,

>

Hi .

I have been too unwell to continue studying at the moment and last

semester I had to drop the unit where I was supposed to be learning

HTML. Consequently, I am not sure that I would have sufficient knowledge

to help with a webpage. I did learn (and get good marks in) quite a bit

of java last semester (including applets) but even that I am not sure if

I could recall too well. I hate the way my brain gets hazy and unable to

think much when I flare up. I have not been able to do any programming

for a couple of months at least now. I had a hard time explaining to

staff how what they saw last semester as very talented and a future

research student prospect is now an idiot due to a stupid illness that

half the world does not believe in anyway.

CZ

P.S. When do you guys meet for chat? I have only been reading mail in

response to my own so I am far behind on all my list mail.

March 22, 2003

In a message dated 3/22/03 1:06:17 PM Eastern Standard Time,

burnett@... writes:

<< Take care everyone & love & prayers to you all!

Mom to , 15 & , 9

From Waterloo, Ontario, Canada

P.S. Sorry so long!

>>

I'm not sorry ! LOL Was nice to hear from you. I'm still trying to

catch up on the posts! There just doesn't seem to be enough hours in the day

anymore.

Gail :-)

March 22, 2003

Hi Everyone,

I've finally caught up with all the posts. I'm here celebrating,

sympathizing & praying along-side all of you. This list continues to be my

life-line. It is so therapeutic & valuable. Thank you to Joan once again.

We will be eternally grateful.

Joan - Congratulations on your book. I finally got a copy & it is

wonderful! You have helped so many families and this resource will be

invaluable for many of us throughout the years.

- Also, thanks for the links to PECS & Picture This. I, too, am

reviewing our communication strategies & trying to " guide " the school

(Aren't THEY supposed to be the professionals?). objects - photos, PECS,

signs - we're trying a bit of all of these, but need to be more organized &

more consistent. Hard, hard work, but worth it in the end.

a, Donna (Montyman's Mom) & - re your discussion on Kindermusik &

music therapy, I am a liscenced Kindermusik teacher and I agree it is a

wonderful program. It is primarily for typical children, but children with

special needs are integrated into the classes & do very well because it is

totally based on following the child's lead & modifying & adapting the

activities to suit the child's developmental level. It is for children from

0 - 7 yrs. Our took Kindermusik until she was 10 & loved it! Now,

music therapy is quite different. It is a specialized therapy given by a

therapist with high credentials. The therapist has a Bachelor of Music as

well as many psychology & social work courses. The sessions can be private

or group. Our has been taking private music therapy for 10 yrs.

now & it has been fabulous for her. It is a place where she can actually

make music with the therapist. It is a true partnership (much improvisation

on the part of the therapist). Steph will play drums, gong, many other

percussion & ethno instruments, sing (vocalize) or just play the piano

(sometimes very softly or very loudly), depending on her mood. She is truly

expressing herself & being creative. It is one place where there are no

expectations (except appropriate behaviour) & she can justbe herself. I

highly recommend both these programs. There are websites for both.

Charlyne - I hope Zeb is feeling much better by now - is this day 9? I am

truly amazed at how compassionate & supportive of all of us you are right in

this midst of going thru tough times of your own. Hugs & thanks.

Margaret - I will definitely be thinking of you & praying on Thurs. the 27th

that things go as well as they can for Gareth's hip surgery. I know that we

could have been in your shoes ( & might be some day, who knows?). Thanks for

all your expertise & encouragement re meds. Your last post about how we

don't hesitate to medicate our children for " physical " conditions, but have

such trouble & guilt about medicating for psychiatric reasons made a lot of

sense. I also recall Sara sharing how they considered the health of the

whole family unit when deciding to medicate. So much wisdom from all of

you. P.S. I was 6 months pregnant when Steph was in hospital for 3 months

getting chemo for leukemia. Those cots are unbearable! Hope your hospital

stay is brief! Many prayers & hugs.

Donna - So glad to hear 's surgery went O.K. Hope it's benign. And

good luck with the med. decisions for Maddie. You have lots of wonderful

support here as you go down that road. How's the PICA these days? Steph

got into a box of 's crayons the other day - Yuck!!! Also, the feces

habit continues! Sigh!

Leah - so Ashton has become a woman! As begins her third year of

menstruating (hard to believe!) I'm so grateful for depo-provera. She's

been on it for 1 yr. now & it's wonderful not having the mess every month.

For those who don't know us, is 15 yrs. old, & is cognitively

14 -18 months old. She's an infant in a teenager's body. And she has PICA

to boot! Anyway, although there are undesirable side effects of

depo-provera (such as depleting the bones of calcium), we are coping so much

better as a result of Steph being on it. Just for the record, I'd rather

that Steph have a hysterectomy, but it is next to impossible here in Canada.

The hospital ethics boards will not allow it. In fact a mother in B.C. is

being taken to court by the province because she had her son steralized.

He's a young adult with a cognitive age of 6.

Karyn - You shared with us that you don't allow substitute aides to support

in the bathroom, so that he will learn that you should only allow

recognized, trusted individuals to have that role. Good point.

Laure - Good luck with Jon. It sounds like the new hospital " gets it " & is

making progress with Jon's behaviour. They are giving him ownership of his

actions & giving him the dignity of recognizing that he can understand that

his actions have consequences. I'm sorry you had to wait so long to find

the right support. We're here, so keep in touch.

Dena - Thanks for the tips on the dental " finger " brushes. Has anyone ever

tried " deta-swabs " or " toothettes " ? They are little sponges (come in green,

pink & blue) on a small stick (like a sucker/lollipop stick). You put

toothpaste or mouthwash on them & gently brush/massage your child's mouth.

We had them when Steph had leukemia & her gums bled a lot. She often bit

down on them & ended up swallowing a few sponges, but we were able to keep

her mouth & teeth clean. They're available from hospital pharmacies.

CK - Thanks for your updates on Ian. We really appreciate your perspective

as many of us know that we could be in your shoes & might be some day. I

hope you have a happy time when Ian comes home for the week.

June - Welcome to the list & please don't ever feel that you're whining.

That's why we're here - to support you & help you thru these tough times.

used to headbutt, but fortunately, she outgrew that behavior.

There were a few times I thought she might break someone's nose. We'd be

cuddling her & suddenly she'd decide that she's had enough (I think she was

sensorily overstimulated) & she's haul off & head butt you. Of course she

was communicating that she didn't want to be held, but we hadn't taught her

an appropriate way to say " No " . She also would headband against the wall.

Keep in touch, June & don't blame yourself. The school needs to get a

behavoiur plan in place.

Good luck & {{{{{Hugs}}}}}

Beth - I'll get a private e-mail off to you soon. Wow, what quick

work in organizing a special ed parent group. I peeked at the site from

Irma & I'm sure it will be all you need to set up a good working model.

Here in Ontario we have Special Education Advisory Committees which are

mandated by the government. Every school board has them & they consist of

parent representatives of all different challenges (developmentally delayed,

visually impaired, hearing impaired, autistic, ADHD, etc...) From Board to

Board they have varying influence depending on how aggressive/good at

advocating the parents are. The committee also has Board (District)

representatives on it & sometimes they can overly influence the direction of

the committee, so that very little gets accomplished. Anyway, good luck

with the whole process.

Irma - I'll e-mail you privately soon too. Thanks for always bringing up

new topics to get us thinking - mercury toxicity, eh? My mouth is full of

silver fillings! How's doing these days? Steph still loves the

books you sent!

Marisa - Brook is close to in cognitive age, so I have been

following your journey with setting up a communication system for him. We

have tried photos with little success & now the school wants to try PECS,

but I think they're too abstract. Thanks for getting me thinking about this

whole topic again. You are lucky to have a Dr. who is willing to be so

involved in helping you with IEP goals.

Take care everyone & love & prayers to you all!

Mom to , 15 & , 9

From Waterloo, Ontario, Canada

P.S. Sorry so long!

March 22, 2003

Hi ,

I want to thank you for your lovely CD you've sent. I finally had

the oppportunity to listen to it. What beautiful smile you have.

Boy! Have I been a fortuante person to listen to your inspirational

musical medicine for my mind and spirit. I personally love it! Ok,

here is my question. Are and tall like their daddy?

The other question which you've already mentioned was also on my

mind. Which I was curious about if she enjoyed music and

of course what have y'all taught her and what were the feedback?

Thanks for sharing the outcome of Steph with the music topic, 10

yrs! Wow!

I'm so behind. Right now, I'm taking a break from helping one of my

neighbors move out and she is recovering from an emergency surgery

which had occurred recently. My 16 y/o son is on spring break and

has been busy playing his war games online and of course keeping up

with our heartbreaking never-ending battle for freedom news. This

will always continue as our fore-fathers have in the past. But, I

will always support our troops who put their lifes on the line for

us as they protect our country. In God we trust.

Your post has brought me up to date with our list, thanks for your

recap/outline response, it helps. I too, have seen this list as a

Godsend!

Take care and many hugs.

Irma,14,DS/ASD

P.S. is still recovering from his on and off fever. Their

either low-grade or the normal fever that everyone experiences and I

have to keep a close eye when this happens or he'll have a seizure,

eh!

March 23, 2003

>

> From: " mum592001 " <ICANFIELD@...>

> Date: 2003/03/22 Sat PM 02:17:45 EST

>

> Subject: Re: Update (Long)

>

Irma, Does get siezures? Or are you just worried he might get siezures

because of the fevers? Do you think he has some kind of infection that causes

these low grade fevers. One more question, How does he physically? Is he tired,

and listless around the house.

Diane

March 26, 2003

In a message dated 3/22/2003 1:06:19 PM Eastern Standard Time,

burnett@... writes:

> Donna - So glad to hear 's surgery went O.K. Hope it's benign. And

> good luck with the med. decisions for Maddie. You have lots of wonderful

> support here as you go down that road. How's the PICA these days? Steph

> got into a box of 's crayons the other day - Yuck!!! Also, the feces

> habit continues! Sigh!

>

Hey !! I love when you post!! You're so sweet to always include

everyone!! And it's wonderful to get a update!!!! Yea, we still

have the PICA nonsense. And she's just too smart these days...for

instance she now knows that those tubular things are also candles..sheesh!!

We can add toothpaste to her list of obsessions these days, and yes, the

feces is still an issue here too. Although, it doesn't happen as often as

it used to, I must say.

So the meds work to keep Steph from menstruating? I'm so naive when it

comes to this stuff. I've never been on the pill, so don't know. Is

depo-provera (sp?) a form of birth control? And how easy or difficult was

it to have it prescribed for her? We're a ways away from dealing with it,

but it's coming.

{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}

Donna

November 18, 2006

Listmates,

I haven't been around much lately, first because my adrenal/thyroid

situation got very bad and I was too tired to keep up, and then

because I finally got that fixed and have been catching up with real life.

Andy talks about adrenals being a very very common problem for

Hg-poisoned peeps, and man do I wish I had been able to hear that

sooner. I'm going to describe a little of what adrenal fatigue felt

like to me, since it might help in understanding our kiddos.

I never realized how active the adrenals are, pumping out hormones as

you encounter stuff during the course of the day. But when your

adrenals aren't functioning well, things that you'd never have

considered stressful suddenly are extremely stressful, because you

don't have the hormomes necessary to help you through it. And there's

a snowball effect of feeling anxious about encountering any stress at

all because you really want to avoid that feeling of not enough

hormone, which is very scary and deeply unpleasant. So for instance

driving was kind of a nightmare since always someone will pull out in

front of you or whatever and it would make me feel like I was going to

throw up or faint or just not be able to function. If a stranger rang

the doorbell it would take a vast amount of energy and will just to go

talk to whomever it was -- and I don't mean anything more stressful

than a neighbor looking for a lost cat. I walked around with a feeling

of dread a lot of the time, but with adequately supported adrenals

(and thyroid) that feeling is completely gone.

I couldn't help remembering all the meltdowns n used to have, and

wondering how much of them were directly related to adrenal problems.

At least I could do what I had to do to manage the symptoms -- like

not leaving the house unless I had to, avoiding driving, avoiding

face-to-face social interaction. So I'm imagining being 4 yo, and

being forced to leave the house for preschool, and your mom insisting

you go find your shoes -- and boy, I'd have had a meltdown too. If I'd

been 4 yo with AF, I'd have wanted to watch TV or sit with a blanket

over my head all day, and want nothing more than for people to leave.

me. alone.

I guess what I'm suggesting is that giving all the adrenal support

supps is likely to be very important, and if your kid shows signs of

anxiety (and for n, this wasn't all that easy to spot because it

often looked like bossiness and contrariness) then consider ACE. (Does

anyone know if there are saliva test reference ranges for kids? Are

any kids on Cortef?) And after years of not being able to get Armour

at the right dose, the addition of Cortef has finally got that working

right, so treating thyroid but not adrenals might be insufficient for

some kids.

The other bit of update is that n is doing gangbusters on LDN.

He's having his usual good response -- increased cheerfulness, energy,

self-motivation, maturity. He's madly doing all sorts of craft

projects at the moment, instead of moping around saying he's bored.

He's pitching in with chores *cheerfully, instead of acting like he's

being punished by having to put his plate in the dishwasher.

I've got him on a variety of antivirals at the same time, and he's

going through a phase of unexplained fevers -- no other symptoms, but

a fever of 100 or 101 that lasts for days. He's very perky and

cheerful during it. Does this sound like a good thing, like maybe the

viruses are getting routed?

Nell

November 18, 2006

Nell, thank you so much for this insight on adrenals. This makes an

incredible amount of sense, and it also sounds like advice I need to

pay attention to. I am so glad to hear of n's response to LDN!

take good care

Rene

>

> Listmates,

>

> I haven't been around much lately, first because my adrenal/thyroid

> situation got very bad and I was too tired to keep up, and then

> because I finally got that fixed and have been catching up with real

life.

November 18, 2006

> I've got him on a variety of antivirals at the same time, and he's

> going through a phase of unexplained fevers -- no other symptoms, but

> a fever of 100 or 101 that lasts for days. He's very perky and

> cheerful during it. Does this sound like a good thing, like maybe the

> viruses are getting routed?

Yes. As viruses leave my son's body, they tend to cause " typical

virus symptoms " on the way out.

Glad you are n are doing better now.

Dana

November 18, 2006

Hi Nell,

I know what you mean when you talk about the exhaustion and anxiety. It's

affecting my sleep. I'm exhausting during the day, but wake up during the

night. I also wondered if this was one of the reasons my daughter was doing

the same. She's definitely exhausted.

I have an appointment next month and hope to get to the bottom of this for the

both of us.

Thanks for the wonderful update on your son!

Orelindel

>

> Listmates,

>

..

>

> The other bit of update is that n is doing gangbusters on LDN.

> He's having his usual good response -- increased cheerfulness, energy,

> self-motivation, maturity. He's madly doing all sorts of craft

> projects at the moment, instead of moping around saying he's bored.

> He's pitching in with chores *cheerfully, instead of acting like he's

> being punished by having to put his plate in the dishwasher.

>

> Nell

>

November 18, 2006

>

> I never realized how active the adrenals are, pumping out hormones as

> you encounter stuff during the course of the day. But when your

> adrenals aren't functioning well, things that you'd never have

> considered stressful suddenly are extremely stressful, because you

> don't have the hormomes necessary to help you through it. And there's

> a snowball effect of feeling anxious about encountering any stress at

> all because you really want to avoid that feeling of not enough

> hormone, which is very scary and deeply unpleasant. So for instance

> driving was kind of a nightmare since always someone will pull out in

> front of you or whatever and it would make me feel like I was going to

> throw up or faint or just not be able to function. If a stranger rang

> the doorbell it would take a vast amount of energy and will just to go

> talk to whomever it was -- and I don't mean anything more stressful

> than a neighbor looking for a lost cat. I walked around with a feeling

> of dread a lot of the time, but with adequately supported adrenals

> (and thyroid) that feeling is completely gone.

>

Nell, your good reports inspired me to do a saliva test on myself. I'll be

taking it this

month (based on days of your cycle for those who don't know).

Looking back, I realize that I had been spending energy arranging my days so

they were

NOT stressful. My main tool was avoidance. Just don't do anything, and it

won't stress

you out, right?

I just finished round 45, and since starting chelation last December, my energy

is up, I'm

facing more projects head on and not avoiding them, and I'm feeling less

anxious. I'm

definately sleeping better too, and being able to exercise has made a huge

difference

there (and with mood, and energy).

I can relate to the feelings of dread too. I've noticed that I can think about

the future and

not want to go back to bed.

GREAT to hear about you, and n of course too.

in Illinois

November 18, 2006

Hi Nell,

I am so glad to read that!

It sure sounds like n is fighting viruses..

November 19, 2006

Very appreciate of this report Nell. A good example of how valuable adults on

our list are in helping understand what our kids are going through. Glad you

found what helped you and nice to hear that n is moving forward.

[ ] Update (long)