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Heck, I had mine in the garden. Took three tries to walk back to the

house (about 300 yards). I had to drop the weed whacker at one of

my 'rest' stops. I sat down in a recliner and tried to take my BP.

It was realllyyyy low, then unreadable. My heart rate was in the

200's but who can count that fast? Took my kids an hour to convince

me to go to the hospital. Of course, by the time I got there I was

recovering. My heart rate was in the 150's.

Bridget

> Daveed to you I feel like a faker. Ihad my V tach in a shopoping

mall

> not too far from the hospital, and after a few minutes Iknew I had

> problems, so I told my wife to get to the ER asap. She got lost

> trying to find a short cut. I had the tachycardia for only about 30

> minutes at a much lower rate, before they got it stopped. I never

> passed out, but I was really disoriented.

> Ralph

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Welcome Dave, I am one of the older members here. I had my first icd when they were still in the experimental stage. I think I have been through some very difficult experience including my first icd shocking me 54 times in 4 hours as it was defective. At the time no one knew what to do so I had to be life flighted to Cleveland Clinic. If it weren't for this group I am not sure where I would be today. I was more than terrified and wanted to do with a icd but to get it out before it hurt me again.

I am now on my fourth unit and of course with my luck which is always bad each unit has misfired and I have had problems with the lead wires. I have had many necessary shocks and let me tell you they are quite different that those you receive when the unit is defective. I got a new unit this Sept after returning from a wonderful beach trip to S. Carolina. Where for the first time I just simple enjoyed the heck out of life and swam and played like a kid. On the way home I started having problems and by Monday unit started misfiring. They decided to give me new unit rather than repair the old.

Now I will have surgery again on the 25th to fix this unit. I had a Medtronic and now a Guidant which is much smaller then the other for some reason it will not stay in place. They thought that the pocket would shrink but of course it is not. When I saw the heart doctor he said oh no we can't have that those wires will get all twisted. So off I go, but this should be a piece of cake from all the others.

I suffer from V-Tach and have frequent episodes. Ask me now how I feel about having a icd, and I will tell you I am thankful. It has extended my life, which has allowed me the j oy of becoming a grandmother. I just found out there will be a new baby the last of September. Little Jessie will have a rival and Zack and Maya will have a new cousin. This is when life is at its best. Jessie is 27 months old and the apple of my eye. I have a little technique I use now When I get so down I made my self a scrap book of my grandchildren and my garden and I set down and take a good long look at the memories I have and then nothing seems that bad.

I will not tell you there are not bad days weeks or even months but I will tell you no matter what they are worth it. This group has given me love, support, comfort, humor, prayers and hugs and anything else I have ever needed.

S welcome to the best place you could ever hope to be and to the greatest group of people in the world.

Sharon in Ohio

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Hello Dave,

Thank you for your replies and stories. Yes, at some point perhaps, I would

like to contact you off line and talk in more detail. I appreciate the

length and depth of your reply to me on the zap-list. I think the others

will indulge us.

Your account of first identifying your problem was indeed harrowing. Thank

God you are still among us. I do appreciate hearing your story of exercise

and how you have learned to be moderate. Strange how aerobic exercise is

recommended with most heart disease except ours. It sounds like you're

enjoying life even after lots of shocks -- very comforting for me to hear.

I know that this condition takes a different pace with everyone, so I (like

others) feel a bit like a phony being in this group really only having an

ICD on the authority of a doctor -- even a doctor who is ‘an authority’.

I was going along happily and needed an EKG a few years ago for some minor

day-surgery. It came back with a recommendation that I be screened for ARVD

or Brugada’s syndrome. That began the whole process that led to me first

seeing one EP Dr. Kirchoffer at Baystate in Springfield, a really great guy,

who diagnosed ARVD but couldn’t get me to convert in the EP study. He sent

me on my way, but when I began to have non-sustained runs of PVC’s he

referred me to Dr. Estes who, after an angiogram and a biopsy, said I should

have the ICD.

The worst part for me has been trying to get to know what this is all about.

It appears that with ARVD the heart doesn’t get better, you just hope for

better medicines and not to lose too much ground. Nevertheless I am grateful

for the good doctors I’ve had and have. The unhappy stories about some doc’s

are reminders of how good I have it. I am truly grateful.

Like most people I would love to find a supplement or regimen that would

enhance my health or arrest the disease. I spend time reading and

researching, but nothing has come along with a stamp of credibility. I do

take more vitamins, minerals, and fish oil now than before, switched to

decaf (boo-hoo), drink a small glass of wine or a beer only occasionally.

Maybe all of those things will help some. Things are very quiet right now,

although I notice that stress surely induces PVC’s. I’m a high-school

teacher and vacations are golden, quiet times for my heart. Too bad I’m not

near retirement.

I have a wonderful wife and 9-year-old daughter who keep me on the run.

Walks, easy paddling of our canoe (we live on a river), and light bike rides

…nothing strenuous… is my regimen for exercise, when I get it. I guess to be

48 and only now diagnosed with ARVD I’m doing ok. Since it’s familial, my

siblings are being checked… so far so good, although my brother has been

referred to Dr. Estes for a closer look. We’ll keep an eye on my daughter.

The responsible gene may be pinpointed before we ever see symptoms if she

has it.

Dr. Estes says that the gene is more likely to be a risk factor than the

actual cause. Kind of like being genetically predisposed to cancer. Some

folks get it some don’t. So knowledge is our friend.

Thank you Dave for joining up and being so communicative. God bless you and

all here as we muddle through. Take good care and stay in touch.

Ken

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Taniel!

Hiya! I'm just down the road a piece from you in Macedon Center (on 31F).

:-) We moved here about a 16 months ago from Seattle. I'm brand new to the

soaping thing and just got started this last year. :-)

Not much locally here, just found out about the olive house (olive tree?) in

Naples... want to go shopping!!!!!!!!

Welcome,

Kirstin

New Member

Hi all! I just wanted to introduce myself, my name is Taniel Leppla. I

live in Fairport, NY (outside of Rochester). We moved here 3 years ago from

Texas. About two years ago I severely fractured my left wrist, which left

me unable to do my soapmaking. For over a year I wasn't able to make

anything - it was horrible! But now I'm back in full swing making soaps and

lotions (I never used lotions much until I moved here and experienced what 6

months of having the heater on does to the skin!) I've been making soap and

cosmetics now for five years. I don't wholesale or do craft shows - just

for friends and family.

I'm desperately low on a lot of supplies, so I hope to glean some

information about suppliers and I also help others here, too!

Here's my first question: Where do you buy your bulk lye from in the

Rochester area?

Anyway, I look forward to chatting with everyone.

Taniel

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Welcome, Taniel! I'm in Naples but come to Fairport occasionally as my husband's

Aunt lives there and I also sell my soaps from a local gift shop, Village Gifts.

As far as supplies go, Kirstin's right, Olive Tree is here in Naples

www.olivetreesoaps.com . I usually buy in bulk (pails) so get most of my oils

from Columbus Foods on the internet but check Olive Tree out. She's got a great

variety! As far as bulk lye goes, I was buying the cans (very frequently) until

another list member, , brought bags of it to our last gathering. I stocked

up then! Lizz referred me once to a chemical supply place in Caledonia called

Chemical. I haven't contacted them yet because I had bought the bags from

but I think they were very reasonable. Nice " meeting " you!

Katy

New Member

Hi all! I just wanted to introduce myself, my name is Taniel Leppla. I live

in Fairport, NY (outside of Rochester). We moved here 3 years ago from Texas.

About two years ago I severely fractured my left wrist, which left me unable to

do my soapmaking. For over a year I wasn't able to make anything - it was

horrible! But now I'm back in full swing making soaps and lotions (I never used

lotions much until I moved here and experienced what 6 months of having the

heater on does to the skin!) I've been making soap and cosmetics now for five

years. I don't wholesale or do craft shows - just for friends and family.

I'm desperately low on a lot of supplies, so I hope to glean some information

about suppliers and I also help others here, too!

Here's my first question: Where do you buy your bulk lye from in the

Rochester area?

Anyway, I look forward to chatting with everyone.

Taniel

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Hi Taniel, I'm Shaye and I live little bit north of you in Ontario. I've

been Soaping for 6 years and have yet to find bulk lye in Rochester. I have

been getting it bulk from one of our members (H1 - Hey !) at our

annual gathering.

Other places for soap supplies, like said... Kae at

www.olivetreesoaps.com supplies some fantastic supplies, Other suppliers

in NY state are in the notes at the bottome of the posts. Bill at Saratoga

Scents has some great supplies and molds and of Creekside Soaps sells

some great molds. Also many times people are interested in going in

together for supplies from places further away.

Taniel, welcome to our group!

Shaye

The Soap Shack

New Member

Hi all! I just wanted to introduce myself, my name is Taniel Leppla. I

live in Fairport, NY (outside of Rochester). We moved here 3 years ago from

Texas. About two years ago I severely fractured my left wrist, which left

me unable to do my soapmaking. For over a year I wasn't able to make

anything - it was horrible! But now I'm back in full swing making soaps and

lotions (I never used lotions much until I moved here and experienced what 6

months of having the heater on does to the skin!) I've been making soap and

cosmetics now for five years. I don't wholesale or do craft shows - just

for friends and family.

I'm desperately low on a lot of supplies, so I hope to glean some

information about suppliers and I also help others here, too!

Here's my first question: Where do you buy your bulk lye from in the

Rochester area?

Anyway, I look forward to chatting with everyone.

Taniel

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Shaye <shaye@...> wrote:Hi Taniel, I'm Shaye and I live little bit

north of you in Ontario. I've

been Soaping for 6 years and have yet to find bulk lye in Rochester. I have

been getting it bulk from one of our members (H1 - Hey !) at our

annual gathering.

Other places for soap supplies, like said... Kae at

www.olivetreesoaps.com supplies some fantastic supplies, Other suppliers

in NY state are in the notes at the bottome of the posts. Bill at Saratoga

Scents has some great supplies and molds and of Creekside Soaps sells

some great molds. Also many times people are interested in going in

together for supplies from places further away.

Taniel, welcome to our group!

Shaye

The Soap Shack

New Member

Hi all! I just wanted to introduce myself, my name is Taniel Leppla. I

live in Fairport, NY (outside of Rochester). We moved here 3 years ago from

Texas. About two years ago I severely fractured my left wrist, which left

me unable to do my soapmaking. For over a year I wasn't able to make

anything - it was horrible! But now I'm back in full swing making soaps and

lotions (I never used lotions much until I moved here and experienced what 6

months of having the heater on does to the skin!) I've been making soap and

cosmetics now for five years. I don't wholesale or do craft shows - just

for friends and family.

I'm desperately low on a lot of supplies, so I hope to glean some

information about suppliers and I also help others here, too!

Here's my first question: Where do you buy your bulk lye from in the

Rochester area?

Anyway, I look forward to chatting with everyone.

Taniel

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Dear Taniel,

Hi! I'm nne, 28 years old, living in Columbia County, NY. Welcome to our

list! You'll LOVE it here. I mainly do melt-and-pour soaps, but I have tried

cold-process soap a few times. I also do bath salts, lotions, lip balms, and

stuff like that. I have an online journal [address listed below]. Looking

forward to getting to know you!

..:. nne V. Jensen

http://bathtubjunkie.star-shaped.org/

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  • 3 weeks later...
Guest guest

Hi Barbara,

Welcome to our LL family!!!!! You'll love, love, love Life Lift!!!!! It's

the best and so is Rashelle!!!!!!

Love, Liz

--

On Sun, 07 Mar 2004 18:13:51 -0000 " babbles403 " <babbles403@...>

writes:

Hi, everyone!

I'm a new member and have not yet received product. I have enjoyed

reading the experiences of the group and anxiously await my package.

I used Body Flex in the past and did lose inches. I came across Life

Lift when I was searching the internet for Body Flex and decided to

try it.

If it works for me, I will turn my family members on to it.

I have 3 sons struggling with their weight.

I wish I had ordered the body wrap when I ordered my tape but didn't

get intrigued by it until afterwards.

I am retired and helping take care of my elderly parents.

Weight was not an issue growing up and even after the birth of 4

children, but sometime after that it " snuck " up on me.

I'm looking forward to sharing my results with the group and am

thinking seriously about the body wrap.

Best Regards,

Barbara

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Guest guest

I second the motion!!

R

Re: New Member

Hi Barbara,

Welcome to our LL family!!!!! You'll love, love, love Life Lift!!!!! It's

the best and so is Rashelle!!!!!!

Love, Liz

--

On Sun, 07 Mar 2004 18:13:51 -0000 " babbles403 " <babbles403@...>

writes:

Hi, everyone!

I'm a new member and have not yet received product. I have enjoyed

reading the experiences of the group and anxiously await my package.

I used Body Flex in the past and did lose inches. I came across Life

Lift when I was searching the internet for Body Flex and decided to

try it.

If it works for me, I will turn my family members on to it.

I have 3 sons struggling with their weight.

I wish I had ordered the body wrap when I ordered my tape but didn't

get intrigued by it until afterwards.

I am retired and helping take care of my elderly parents.

Weight was not an issue growing up and even after the birth of 4

children, but sometime after that it " snuck " up on me.

I'm looking forward to sharing my results with the group and am

thinking seriously about the body wrap.

Best Regards,

Barbara

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Guest guest

Props to Aurea for being bold enough to join a small group like ours. So far

away and yet so close. And how ODD that our local paper is doing a Front

Pages Series of articles this very week on the RAPING OF THE BRAZILIAN

RAINFOREST by American agri-biz megacorporations and the scallywags

that follow. It is so sickening that I can hardly read them. (Aurea, I bet you

could go on-line and read them in the Minneapolis Star and Tribune, but you

may not want to see it). The series shows modern Gold Rush 49'ers

bragging about their pesticided, GMO row crops going as far as the eye can

see and stating " Just think, this was only useless rainforest 10 years ago!! "

Yipes! Sad to say, our Cargill is the Halliburton of Brazil exploitation and

many

MN farmers are down there plundering away (our state already being ruined).

They think Brazil is great, you can use any chemical you want there.

Regarding her questions (and I am curious how others, especially the moms,

will answer her here) here's my own immediate response,

1) Re. phlegm from dairy: I don't see it at all with raw dairy. You really do

need to move SLOWLY with any and all major diet change though. We saw a

neighbor child get holistically cured of asthma and she can now drink raw

milk, the former trigger of her attacks.

2) Re. raw milk sales: It is illegal here too, but there are ways to get it.

Start

hanging around natural food stores and gently asking a lot of questions.

3) Re. leaving vegetarianism: I started with good ocean wild fish, eggs, dairy,

then some chicken and finally more red meat. It worked and I never had a

problem. Rebekah never was much of a meat-eater and she is having a

harder time of it. See NOURISHING TRADITIONS on this process.We are

still working up the ladder. Sally recommends about a pound of RAW MEAT a

week. We aren't there yet!

4) Re. local diseases: I gave Aurea the name of another holistic sustainable

ag vet in Brazil who can help her find good stuff. Incidentally, Aurea is a

holistic vet and acupuncturist (for people) herself.

5) Re. giving raw milk to babies: Be 100% sure of your sources before you

make the switch. By all means, read THE UNTOLD STORY OF MILK if you

can get a copy. I believe Amazon.com can get it for anyone. Good raw milk

will actually KILL contaminant organisms such as E. coli, Salmonella, Staph,

Strept as well as other pathogens.

Most of all Aurea, don't give up fighting the forces of stupid laws and the

hopelessness of not knowing any sources of good food yet. Some things, like

Spirituality, Hope, Healing, Art and the Will of the people to survive NEVER

CAN BE KILLED by the authorities, the media, the corporations or the

government.

Best wishes,

Will

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Guest guest

--- Will Winter <holistic@...> wrote:

> 1) Re. phlegm from dairy: I don't see it at all with raw dairy. You really do

> need to move SLOWLY with any and all major diet change though. We saw a

> neighbor child get holistically cured of asthma and she can now drink raw

> milk, the former trigger of her attacks.

I would add that the obsession with phlegm in alternative health is somewhat

misplaced in my

opinion. Mucous is a critical part of our biological system. Too much is a bad

thing, but that's

true of any biological product or process. I think that most of the issue with

" phlegm " is a

gut-reaction to something that is icky and (non-causally) correlated to common

illnesses rather

than being a reaction to something that is genuinely unhealthy.

> 2) Re. raw milk sales: It is illegal here too, but there are ways to get it.

Start

> hanging around natural food stores and gently asking a lot of questions.

Actually it's not illegal here. Let's not grant them more of a victory over us

than they really

have. Raw milk is only illegal to re-sell, advertise or process for commercial

purposes (actually

that last one isn't even completely illegal). It is completely legal to sell

directly from the

farm as long as the farmer does not advertise raw milk sales and the purchaser

supplies the

container. The problems are that advertising is also information (which is also

what makes the

law very unconstitutional, in my opinion), and that contemporary lifestyles

demand more

convenience than direct farm sales can provide.

> 3) Re. leaving vegetarianism: I started with good ocean wild fish, eggs,

dairy,

> then some chicken and finally more red meat. It worked and I never had a

> problem. Rebekah never was much of a meat-eater and she is having a

> harder time of it. See NOURISHING TRADITIONS on this process.We are

> still working up the ladder. Sally recommends about a pound of RAW MEAT a

> week. We aren't there yet!

I'd also suggest visiting the farm once you find a good one. It can help to see

that the animals

that are out grazing do have a decent life and seem contented.

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Guest guest

Welcome Barbara! I did body flex for 3 years I liked it but it was too

harsh and I started having back and neck problems, did you have any of

this with that one? Life lift and Rashelle are so gentle it is a

soothing experience not at all like work! And I having been doing it

for over a year and no pain at all!! Just feel wonderful!!! :-) Connie

New Member

Hi, everyone!

I'm a new member and have not yet received product. I have enjoyed

reading the experiences of the group and anxiously await my package.

I used Body Flex in the past and did lose inches. I came across Life

Lift when I was searching the internet for Body Flex and decided to

try it.

If it works for me, I will turn my family members on to it.

I have 3 sons struggling with their weight.

I wish I had ordered the body wrap when I ordered my tape but didn't

get intrigued by it until afterwards.

I am retired and helping take care of my elderly parents.

Weight was not an issue growing up and even after the birth of 4

children, but sometime after that it " snuck " up on me.

I'm looking forward to sharing my results with the group and am

thinking seriously about the body wrap.

Best Regards,

Barbara

What can changing the way you breathe do for you? Everything!

See why tens of thousands agree, Life Lift is the best!

http://www.oxygenzoo.com

_____

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Guest guest

Hello Barbara,

Welcome to Life Lift. I am so pleased to see your here with us.

I can't wait for you to get started. It is such an exciting experience to

realize that you can actually enjoy working out. Having your work out actually

feel good can make all the difference in the world in your over all success.

You will love the Body Wrap products when you get started. I keep getting

messages daily from those just starting to use them. I am constantly smiling as

I read the reports.

You will be a wonderful addition to our group. Thanks for writing. Your

participation can make such a difference for someone trying to succeed. You will

be one of our success stories soon and we will all be here cheering you on.

Take good care,

Rashelle

The Body You Have Always Wanted is Coming Soon!

What can changing the way you breathe do for you?

More than you can imagine!

Remember that it is oxygen that burns fat, tones muscle, reduces stress and

increases strength and endurance.

Learn to breathe in the most efficient way possible with Life Lift!

Click here to see why tens of thousands agree, Life Lift is the best!

http://www.oxygenlift.net Life Lift is the Original Aerobic Breathing.

New Member

Hi, everyone!

I'm a new member and have not yet received product. I have enjoyed

reading the experiences of the group and anxiously await my package.

I used Body Flex in the past and did lose inches. I came across Life

Lift when I was searching the internet for Body Flex and decided to

try it.

If it works for me, I will turn my family members on to it.

I have 3 sons struggling with their weight.

I wish I had ordered the body wrap when I ordered my tape but didn't

get intrigued by it until afterwards.

I am retired and helping take care of my elderly parents.

Weight was not an issue growing up and even after the birth of 4

children, but sometime after that it " snuck " up on me.

I'm looking forward to sharing my results with the group and am

thinking seriously about the body wrap.

Best Regards,

Barbara

What can changing the way you breathe do for you? Everything!

See why tens of thousands agree, Life Lift is the best!

http://www.oxygenzoo.com

------------------------------------------------------------------------------

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Guest guest

Hello !

As revolting and disgusting as the Rape of the Rainforest is, remember

only 20% of the conversion of CO² to O² happens because of

photosynthesis of plants on land. 80% of this conversion is done by the

microscopic plants that live in the oceans and lakes. The destruction

of the algae and other water based plants is almost invisible but an

ever greater threat to the " lungs of the planet " .

This is all part of the attack on all of us by the chemical terrorists.

Last year, these chemical terrorists killed 2 million people in the USA.

Bin Laden and his buddies may have only killed 3000 in 9/11. They are

pikers when compared to the Drug Cartel, the Chemical Cartel, the Oil

Cartel, the FDA, the AMA, the MD's, and the hospitals.

GOD HELP US ALL!

Phil Ratte

1713 Innsbruck

Mpls, MN 55421

763 574-0291

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Guest guest

Congratulations Babs!!!!! You'll love it!!!!

Liz

---

I received my tape yesterday and am about to take my first stab at it.

Cross your fingers, everyone and wish me luck.

Also, I was pleasantly surprised at how quickly I received it.

Thanks for the encouragement, . That is also my skinny daughter's

name.

Barbara (Babs in the future)

________________________________________________________________

The best thing to hit the Internet in years - Juno SpeedBand!

Surf the Web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

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Guest guest

Now I am worrying that he's not going to develop any

type of communication and am so desperate about this that I would seriously

consider putting him into a school for the deaf if it would force him to use

sign language. Has anyone else had this experience? >>>>>>>>

WE placed in the MN state academy for the deaf 2 yrs ago when she entered

7th grade. (our home school was k-6 for elem). In hindsight I wish we'd done

it sooner. LOL

She is making much more progress communication wise. She stays in the dorms

during the week (the first few months just a night, then we moved to two, now

it's mon-thurs) Her assistant after school this year is deaf and is making

alot of progress in the area of signing. In her own school where she was the

only one really using sign, the use was so sporatic that she actually wouldn't

use it. :-( It wouldn't surprise me if your son doesn't want to be different

and since no one else is really signing he's not going to either. LOL

And a plus is her speech actually improved within a month of starting school

there, at least her bil said a month after she started that he didin't know what

they were doing but he could understand her much better. :-) Her school

program is based on sign and speech. Her teacher and aide are hearing so she

does get verbal input during the school day.

It's hard to say what would be the best approach for your son, it's something

you have to decide. I can say that we do have no regrets, she's very happy and

loves going to school. We've decided to leave her in the middle school at least

another year since she's doing so well in the class she's in. :-)

If you really want to concider trying this contact the school in your state and

set up a meeting, tour the school and just see what they have to offer. you

could put him in on a trial basis, which we were offered. You can decide at any

time that hte placement is not right for him, IMO for us that made the decision

easier to make. did attend their summer school program 2 yrs before she was

enrolled in the school, it's available to all dear/hoh students in teh state

even if they don't attend the school. You might want to try that if available

to see how he does in that type of setting.

Good Luck

and feel free to contact me about this issue if you have any questions.

Joy

PS what state are you in?? that might help in getting some help with the

emotional issue.

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Guest guest

Joy,

Thanks for the information, we have an IEP coming up in a few weeks and I

was worried that they might think I was crazy for suggesting a school for

the deaf. It's great to be validated.

Also, you're right, I forgot to mention that I'm in Colorado.

Krystal

RE: New Member

PS what state are you in?? that might help in getting some help with the

emotional issue.

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In a message dated 3/12/2004 10:53:36 AM US Mountain Standard Time,

krystal.monroe@... writes:

> ) Ian is non-verbal

Hi and Welcome,

My son Maverick is basically non verbal. He is 13 and has apraxia. When I

say non verbal, I mean that he is not intelligible to most people, but those of

us who are around him alot can understand him.....most of the time. He used

sign language from birth to about 1st grade, he still uses some signs. Last

year we got him an augmentive communication device. This is mainly so he can

communicate with strangers. He is supposed to use it alot at school and after

being resistant the first half of the year they are now using it somewhat.

I am NOT a speech therapist so what I am saying is only my opinion, but I

would make sure you have a proper speech evaluation, (not by the school but by

one through your insurance or your local department of disabilities.) They can

give you their input on what he should work on. Maverick has articulation

goals, speech and language goals, and also " talker " (aug com) goals. So, while

we are using the talker we are NOT giving up on speech.

The sign language is very helpful to help prevent frustration on his part

when he can't mke his needs or wants known. I would encourage that for the time

being.

My nephew, NDA, also had fluid built up and speech problems and it was

undiagnosed until he was 5. When he finally got the tubes in, it was a whole

new

world for him and gradually his speech improved.

So, long letter to get to saying: Don't give up on him learning to speak,

but know there ARE other alternatives.

     ¸...¸ __/ /\____ ________

      ,·´º o`·,/__/ _/\_ //____/\

      ```)¨(´´´ | | | | | | | || |l±±±± |

      ¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-. :º°

     As for me and my house,

      we will serve the Lord.

             24:15

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Guest guest

Krystal,

Welcome to the group. Check out www.jamesdmacdonald.org My daughter is 10 and

was talking, but in a laundry list. We are getting much more communication and

conversation than before.

mom to Bridget 10 in SC

New Member

Hi all!

I am new to the group. My son, Ian, will be 8 in April. Some of the issues

I'd like to get feedback on are these:

1) Ian is non-verbal. I don't believe he was able to hear until just over

a year ago. We had all the hearing tests but were always told that kids

with Downs had issues with fluid in their ear and that it was something that

was transitory in nature. Finally, after 7 years of this it dawned on me

that if he had never had a normal hearing test, the fluid was not 'coming

and going' but was staying put. (In my own defense, he never had ear

infections so no one else thought to recommend tubes either) Anyway I

canceled the rest of his tests and took him to an ENT dr. who put tubes in

his ears the next week. So now we know he can hear (they did a brainwave

test after putting in the tubes) and he does seem to make lots of different

noises but no speech. Has he missed the window for speech development? Is

there any hope at all? His school has been trying to teach him sign

language and he uses a couple of signs, but seems to get his needs met

through other means. Now I am worrying that he's not going to develop any

type of communication and am so desperate about this that I would seriously

consider putting him into a school for the deaf if it would force him to use

sign language. Has anyone else had this experience?

2) In the last year he has begun freaking out when he has to get into a

strange car, sometimes even our car. I thought he was claustrophobic

because I was driving a 2 door coupe so I bought a new one and even took him

with me for the test drives. He is usually ok in our car during the day,

but evening bring this screaming/shaking on. Then he started screaming at

night so we went the route with a nightlite, leaving his door open, hall

light, etc. Nothing seems to work so we call the pediatrician and he is now

taking tenex which seems to help somewhat. Up until a year ago he was good

about cars and going to bed, now I look fondly back at the days when I'd put

him to bed at 8:00 and he'd be sleeping by 8:30, not waking until 6:30. Two

nights ago he was up until 3:30 (for the second night in a row) and I was

sobbing and telling my husband that we were of no help to him and should put

him in foster care! Of course that's all bunk, but I was feeling pretty

desperate, called the dr. in the morning and he said we could double the

evening dose of tenex and things are better now. Does anyone else have

experience with this? Does it end? Will he need to be medicated forever?

Maybe it's bad manners to join a group and bombard you all with my issues

right away, but I feel so alone. Y'know that blank stare you get from

parents of typical kids when you talk about something common to our kids

(like walking late)? Well I get that same stare from my friends who have

kids with DS over these issues which makes me think that there is something

else very wrong with Ian. But what? Is there some good clinic that could

evaluate him and give me real answers? I do not want to go through a bunch

of testing to find that he is equivalent to a 2 year old - I know he's

delayed, I want answers that can guide us to treatment/medication/whatever

that will help him have the best life possible.

Krystal

Mom to Ian 8 DS, Meg 6 NDA

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

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Welcome Krystal. My son is 10 years old and has a history of chronic otitis

media (8 sets of tubes). He also has apraxia and a seizure disorder. His

behaviors are not the norm for a child with DS. We've been trying medications

for the past few years. Tenex worked for just a short period of time. I think

the best medication so far as been the depakote. I have a sweet loving child

now :) It took us a long time to get the right medications (he is also on

respirdal - we are reducing the dose this weekend due to weight gain). He takes

carbatrol for the seizures.

There are a few of us here whose children's behaviors are more complex.

's speech just keeps getting better and better. I have to remind him to

say things in sentences. He loves sign language. I know some parents have

accessed a deaf school. The problem with that is your child could be in a

residential setting unless you live close by. My biggest concerns about

residential are 1) being away from home can be traumatic for a child and 2)

sexual abuse could occur when he's not under your watchful eye and there is no

way he could tell you.

I went to the school higher ups last year and requested a self contained

classroom be created that has a strong emphasis on communication disorders in

our neighorhood school area. They were very accomadating. His placement this

year is just perfect! For inclusion, we do reverse mainstreaming and some

mainstreaming. He is in a classroom with three other boys with Down syndrome

(all brothers), his teacher, an assistant and seems like everytime I pop in, the

ST is there. I know he is getting the right speech services and probably more

than what is on his IEP. also gets OT (same OT he's had since he was 2

1/2) and " pet " therapy about once a month. Never give up hope that speech will

come.

If you can afford it, the Kennedy Krieger Institute at s Hopkins has a great

DS clinic. This particular doctor is one who parents from around the US go to

when their child has behaviors beyond the norm.

Last, I dont' know who blew off the fluid in the ears, but you may have grounds

for a lawsuit.

New Member

Hi all!

I am new to the group. My son, Ian, will be 8 in April. Some of the issues

I'd like to get feedback on are these:

1) Ian is non-verbal. I don't believe he was able to hear until just over

a year ago. We had all the hearing tests but were always told that kids

with Downs had issues with fluid in their ear and that it was something that

was transitory in nature. Finally, after 7 years of this it dawned on me

that if he had never had a normal hearing test, the fluid was not 'coming

and going' but was staying put. (In my own defense, he never had ear

infections so no one else thought to recommend tubes either) Anyway I

canceled the rest of his tests and took him to an ENT dr. who put tubes in

his ears the next week. So now we know he can hear (they did a brainwave

test after putting in the tubes) and he does seem to make lots of different

noises but no speech. Has he missed the window for speech development? Is

there any hope at all? His school has been trying to teach him sign

language and he uses a couple of signs, but seems to get his needs met

through other means. Now I am worrying that he's not going to develop any

type of communication and am so desperate about this that I would seriously

consider putting him into a school for the deaf if it would force him to use

sign language. Has anyone else had this experience?

2) In the last year he has begun freaking out when he has to get into a

strange car, sometimes even our car. I thought he was claustrophobic

because I was driving a 2 door coupe so I bought a new one and even took him

with me for the test drives. He is usually ok in our car during the day,

but evening bring this screaming/shaking on. Then he started screaming at

night so we went the route with a nightlite, leaving his door open, hall

light, etc. Nothing seems to work so we call the pediatrician and he is now

taking tenex which seems to help somewhat. Up until a year ago he was good

about cars and going to bed, now I look fondly back at the days when I'd put

him to bed at 8:00 and he'd be sleeping by 8:30, not waking until 6:30. Two

nights ago he was up until 3:30 (for the second night in a row) and I was

sobbing and telling my husband that we were of no help to him and should put

him in foster care! Of course that's all bunk, but I was feeling pretty

desperate, called the dr. in the morning and he said we could double the

evening dose of tenex and things are better now. Does anyone else have

experience with this? Does it end? Will he need to be medicated forever?

Maybe it's bad manners to join a group and bombard you all with my issues

right away, but I feel so alone. Y'know that blank stare you get from

parents of typical kids when you talk about something common to our kids

(like walking late)? Well I get that same stare from my friends who have

kids with DS over these issues which makes me think that there is something

else very wrong with Ian. But what? Is there some good clinic that could

evaluate him and give me real answers? I do not want to go through a bunch

of testing to find that he is equivalent to a 2 year old - I know he's

delayed, I want answers that can guide us to treatment/medication/whatever

that will help him have the best life possible.

Krystal

Mom to Ian 8 DS, Meg 6 NDA

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

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Guest guest

1) Ian is non-verbal. I don't believe he was able to hear until just over

a year ago. 2) In the last year he has begun freaking out when he has to get

into a

strange car, sometimes even our car. >>>>>>>>>>>>

Since he had tubes inserted and became able to hear, could his being able to

hear the night noises be the reason he's developed a fear of sleeping in the

dark? and cars? cars are noisy....just ask me....i got new hearing aides and

couldn't believe how noisy my car was. Of course my car isn't quite as noisy now

since it was driving jeff nuts so he got it fixed, but it's still noisy at least

I think it is, doesn't seem to bother anyone else. :-/

the thing is your ears are trained to tune out all the excess noises or ignore

them or whatever it is you people who hear normally do, his ears havn't had the

benefit of tuning out all the noise so possibly in those situations you

described he is becoming over anxious. just an idea...maybe a dumb one tho.

Joy

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Guest guest

Not dumb- I never would have thought of it- we think crickets are

annoying- how must he feel??

There is a Bear in the Big House Episode all about sounds- and they all

sleep outside- maybe that would be helpful? The Episode is called:

Listen Up- I have it on a US DVD which is called Shapes, Sounds and

Colors with Bear!

Joy Tesmer wrote:

>

> 1) Ian is non-verbal. I don't believe he was able to hear until just over

> a year ago. 2) In the last year he has begun freaking out when he has to

get into a

> strange car, sometimes even our car. >>>>>>>>>>>>

>

>Since he had tubes inserted and became able to hear, could his being able to

hear the night noises be the reason he's developed a fear of sleeping in the

dark? and cars? cars are noisy....just ask me....i got new hearing aides and

couldn't believe how noisy my car was. Of course my car isn't quite as noisy now

since it was driving jeff nuts so he got it fixed, but it's still noisy at least

I think it is, doesn't seem to bother anyone else. :-/

>

>the thing is your ears are trained to tune out all the excess noises or ignore

them or whatever it is you people who hear normally do, his ears havn't had the

benefit of tuning out all the noise so possibly in those situations you

described he is becoming over anxious. just an idea...maybe a dumb one tho.

>

>Joy

>

>[

>

>

--

Aussie Leis- mum to BJ - 6- ds, Natasha 2 and 20 weeks

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  • 2 weeks later...
Guest guest

(new guy) said:

I

do have one FYI though. In a response to the woman from the

Netherlands someone made a comment about it being a scandanavian

country. The Netherlands is not a scandanavian country. The

Netherlands is one of the low countries (Netherlands, Belgium &

Luxembourg). The Scandanavian countries are Norway, Sweden, Denmark,

Iceland, and Finland. Just a little geography lessen for today ;-)

Hi. I think that was me. I thought the Scandinavian countries were Sweden,

Denmark,and Norway, and was confused. I agree that the Netherlands are not

Scandinavian (I plead senior moment). My apologies to the woman from the

Netherlands!!

But I also understood that Finland was not considered Scandinavian, since its

language group is not related to that of the other 3 countries. But of course

this has nothing to do with ITBS. Just thought I'd answer & correct myself.

Ann

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