(No subject)

[Guest guest]

>

>By the way, we were told Monday that is leaning towards being over

>weight. Who would have thought at 20lbs at 19 mos.!! But she's below

>the growth curve for height (might be due to CHARGE but her mother hasn't

>broken the 5 ft mark!!) so they don't want her to have too much weight

>for her height. I just had to laugh!!

Colleen,

This is what Dr.Blake said about Kennedy last time she saw her and is what

prompted her to go for the Bone Age Test. Has your doc ever mentioned

endocrinology or a test or anything like that? Might be worth asking about.

I'm always wondering if this is " it " or not, seems like this CHARGE is never

ending. I just want to know all of it now, and have as few surprises as

possible down the road.

Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir's homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

[Guest guest]

,

That's great news! Have fun at your dinner tonight!

Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir's homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>

>

>Well my Mom is out of the hospital. She is

>staying with us and is very happy to be home.

>She said that she might just stay longer than

>she thought. Tomorrow is my oldest daughters

>birthday. She will be 17. She is so excited. We are

>taking her and some of her friends out to dinner. I

>have one of my mother's friends coming to stay with

>her while I work and when we are go out to dinner.

>My Mom is so funny she thinks she can walk 1 mile.

>She does not understand that she needs to rest as much

>as possible.

>

> Wells

>

>

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

[Guest guest]

Hi, I'm Lorra, and I'm a caregiver to a CHARGE child, whom we'll call Barbie

(due to confidentiality with my workplace). Barbie is 4 years old and a

wonderful child. She is new to our center and we are having problems with

interaction with us and other children. She pretty much does her own thing.

Does anyone have any suggestions? She does not speak but she hears fairly

well, though she chooses to ignore us most of the time.

Thanx

[Guest guest]

Lorra,

There could be many things affecting Barbie's interactions. I suggest you

follow some of Dr. Stanley Greenspan's ideas

and respond to things that interest her or that show even the slightest

possibility of interesting her. If she sits

alone, does she do something like look at books or play with a certain toy?

If so, the caregiver could do the same

thing sitting next to her and if there is any response that Barbie makes, the

caregiver could do the same. IS she

interested in stuffed toys or animals or games or play dough? Play alongside

her.

I think giving her lots of positives when she has eye contact or makes any

gesture toward another person is a good

idea. When she laughs, you laugh. IF she makes a face, you make a face.

It is very important to rule out central auditory processing disorder (CAPD)

where she may hear but may not process

what she hears. She also should be evaluated for issues related to attention.

Also, has she had a complete speech and

language evaluation? Has apraxia of speech been ruled out? How is her vision?

Does she have any visual processing

problems?

These are some of the factors that I believe could be affecting her. Be

gentle with her. As a CHARGEr she has most

likely had many negative experiences in the medical world and she may need to

build her trust in others and learn how

to play and interact.

Best luck. It's very important that she learns the give and take of

communication in a caring environment. It's good

you're on the list. Keep asking away.

wendy

Mom to Kendra, 12 CHARGE, ,18, and Camille, 21

Portland, OR

DrStix@... wrote:

> From: DrStix@...

>

> Hi, I'm Lorra, and I'm a caregiver to a CHARGE child, whom we'll call Barbie

> (due to confidentiality with my workplace). Barbie is 4 years old and a

> wonderful child. She is new to our center and we are having problems with

> interaction with us and other children. She pretty much does her own thing.

> Does anyone have any suggestions? She does not speak but she hears fairly

> well, though she chooses to ignore us most of the time.

>

> Thanx

[Guest guest]

Thank you for the suggestions. Barbie tends to like books and when playing

with toys it's more like an inspection. She does have one particular group

that she plays with alot and when we sit beside her and touch them she gets

very upset with us. She did do something out of the ordinary today and

showed affection towards another child in our group. She has had an

evaluation and is getting therapy. Her only word is Momma. We do think that

some of the difficulties may stem from another possible diagnoses..We think

she may be autistic but have not expressed the wish to have her tested.

Another question you all may be able to answer...Does CHARGE generally affect

a child's ambulatory skills?? Barbie can only walk with a walker but she can

scoot and climb anywhere she wants..

Thank you

Lorra - Caregiver of Barbie

[Guest guest]

Hi Lorra,

My son is 4.5 years and interacts pretty much the same way. I can only say

that peer interaction will most likely be a long-term IEP goals for him. Is

Barbie both hearing and vision impaired? If so, this limits how much of the

world she is able to take in and it definitely impacts her perception of what

is going on. Does she have a one-on-one aid/para/interpreter or intervenor

to help her decipher what is going on around her? My son has a one-on-one

interpreter who is there to help him gain the info. he loses to his

deafblindness. He, too, seems to entertain himself just fine without others.

You just have to watch for self-stimulation behaviors. We try to make him

have interaction with someone most of the day but there are times when he

just wants to play with a toy and be left alone and that is okay. We also

found that with his visual impairments (large colobomas) we have to be very

close for him to see our faces when we communicate with him. This would be

good info. to find out from her records and parents.

Good luck,

Jacque

mom to Austin

[Guest guest]

In a message dated 99-09-09 00:51:38 EDT, you write:

<< pricking my poor sore fingers >>

Hi, Liz, welcome to the list. Maybe this can help for your sore fingers. I

test eight times a day and this lancet holder really doesn't hurt -- it has

five settings and uses B-D Ultra Fine II lancets. The lowest setting works

fine for me. I've been testing this much for over two years and my fingers

aren't scarred and it the prick doesn't hurt. It's called a " Soft Touch " ,

made by Boehringer Mannheim Corporation in Indianapolis, Indiana. They don't

have an e-mail address but they have a 1-800 number which is

1-.

You could call and order directly from them or ask if they have a retail

outlet near where you live. I don't remember how much mine cost but I think

it was somewhere between 10 and $20. For some reason $13 sticks in my mind.

Good luck.Vicki

[Guest guest]

Welcome Marcy! Sorry you need us, but glad to see you here. You will find

informative people with good advice. Believe me, you will find that you are

no *freak*. After you get to know people on your new job, you will probably

find other dm-ers in your midst. there are a lot of us! I attend a church

with a small membership (Probably 300 +) but we have a total of 20 diabetics

there. Three on insulin, many on meds, others diet alone!

We keep tabs on each other and offer help and support! Perhaps you can do

the same. Just do what you need to do to keep your own health in check.

After all, you are a valuable person! Take care of yourself! *hugs* Toni

Marcy and Snowball wrote:

>

>

> Hi:

> I am new to the list. I'm 27 yrs old, have Type 2 - insulin dependant

> diabets. I currently take 4 shots a day. I'm looking forward to

> discussing diabetes with everyone and learning how to adjust to this

> disease. It has just been recently that I have accepted that I really

> do have this disease! I'm interested in how people handle their

> diabetes and work. I am starting a new job and don't want to seem like

> a " freak " needing to eat at certain times,etc. I work as a support

> worker in a group home of mentally / physically challenged individuals.

> I am starting this new job today as we just moved. Any insight would be

> welcome!

>

> Marcy

>

>

[Guest guest]

Marcy wrote:

<< I am new to the list. I'm 27 yrs old, have Type 2 - insulin dependant

diabets. I currently take 4 shots a day. >>

Marcy, at age 27 and using insulin four times a day, I would bet that you

are actually a type 1 ... insulin-dependent. It used to be called

" juvenile-onset diabetes. "

Susie

[Guest guest]

Marcy...One thing I should have told you...check out the new dm site

http://www.diabeteswebsite.com/home.htm

Lots of good stuff. If you need more websites, let me know by private mail

and I will send you some...low carb and regular. Toni

Bill & Toni Fuller wrote:

>

>

> Welcome Marcy! Sorry you need us, but glad to see you here. You will find

> informative people with good advice. Believe me, you will find that you are

> no *freak*. After you get to know people on your new job, you will probably

> find other dm-ers in your midst. there are a lot of us! I attend a church

> with a small membership (Probably 300 +) but we have a total of 20 diabetics

> there. Three on insulin, many on meds, others diet alone!

> We keep tabs on each other and offer help and support! Perhaps you can do

> the same. Just do what you need to do to keep your own health in check.

> After all, you are a valuable person! Take care of yourself! *hugs* Toni

>

> Marcy and Snowball wrote:

>

> >

> >

> > Hi:

> > I am new to the list. I'm 27 yrs old, have Type 2 - insulin dependant

> > diabets. I currently take 4 shots a day. I'm looking forward to

> > discussing diabetes with everyone and learning how to adjust to this

> > disease. It has just been recently that I have accepted that I really

> > do have this disease! I'm interested in how people handle their

> > diabetes and work. I am starting a new job and don't want to seem like

> > a " freak " needing to eat at certain times,etc. I work as a support

> > worker in a group home of mentally / physically challenged individuals.

> > I am starting this new job today as we just moved. Any insight would be

> > welcome!

> >

> > Marcy

> >

> >

>

>

[Guest guest]

Yup, that's like a lot of us, Marcy. My type 1 practitioner calls me a 1.5

or Type 1 1/2, because I'm on insulin. But I'm on insulin by choice for

tight control and way less hypos, as I work physically hard through the day.

There are quite of few of us like that on this list.

Welcome,

Barb

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

RAINBOW FARM UNLTD.

Breeding Premium Warmbloods,

Thoroughbreds, and fancy Welsh ponies.

http://www.rainbowfarm.com

Re: (no subject)

>

>

>Hi Susie:

>Well, they have had differing thoughts on this, each specialist, etc. I

>think they are calling it type 2 because I am overweight (50lbs), and that

>there is a family history of Type 2. I just moved though and the doctor

here

>feels that I am likely Type 1. AAHH! No clear answer on this one!

>Marcy

>

>OtterCritter wrote:

>

>>

>>

>> Marcy wrote:

>>

>> << I am new to the list. I'm 27 yrs old, have Type 2 - insulin dependant

>> diabets. I currently take 4 shots a day. >>

>>

>> Marcy, at age 27 and using insulin four times a day, I would bet that you

>> are actually a type 1 ... insulin-dependent. It used to be called

>> " juvenile-onset diabetes. "

>>

>> Susie

>>

>>

>

>

[Guest guest]

Marcy wrote:

<< I have a question for those of you low-carbing? First of all, are any

of you taking insulin, and how do you adjust? Second, what have your

diabetes teams (doctors, dieticians,etc) had to say about it? I've been

contemplating but am getting different stories so I am trying to figure

things out. Also what plans are you following? OOPS! More than one

question! I also am having trouble deciding as I have good control

without. >>

As you decrease your carbohydrate intake, your glucose levels will drop

dramatically. People who could NOT get their readings below the 200-300

range report getting readings of 100-150 within days. It's important not to

" feed the hypos " with food, if you find yourself dropping because you have

not cut back sufficiently on your insulin injections. Use glucose tablets or

similar instead. This will keep you from gaining weight as your body

adjusts. Don't let yourself drop too low before you try to test, or you

won't be able to get your act together enough to do it right. Frequent

testing will tell you whether you are really low, or just feeling hypo-y

while actually being down in normal range.

It's important to work with your medical team, so I hope they are agreeable.

Diabetes is primarily a self-managed disease, and most doctors just want

their patients to get better. Historically, diabetes has been depressing for

doctors to deal with, because until recently, patients would just get sicker

and sicker, and then die young. Patients typically died within 15 years of

diagnosis. But we have good reason for hope now, with new techniques and

diets and medicines and insulins.

What you can do is to become just as well-informed as possible. The internet

is wonderful for doing medical research. My favorite search engine is

http://www.altavista.com but there are several search engines that are just

for medical research. If you would like some URLs, we will produce them.

Susie

[Guest guest]

I've been low carbing for about 7 months. I started with Sugar Busters

(mostly because I couldn't stand the thought of giving up caffeine) and then

switched to Atkins when I saw how well it was working. My team has so far

said " Well, you're losing the weight, and your glucose is right where we

want it to be " , but I'm actually waiting for my next lipid panel (end of

November) before I decide whether to continue for next year. If my lipids

are okay, I'm LC for life!! I've lost 30 pounds, have lots more energy, and

feel really great.

It has meant that we can't go out to some of the places we used to go, but

it also has meant that we've discovered new places. DH loves Mexican food,

so he has to get it at lunch when I'm not around.

I'm on Glucotrol XL 5mg qd, and when I started LC, I had several hypos a

week, until I finally wised up and started eating more often.

I love low carbing, and it works better than anything else I've tried.

Robin G.

>

Second, what have your

>diabetes teams (doctors, dieticians,etc) had to say about it? I've been

>contemplating but am getting different stories so I am trying to figure

>things out. Also what plans are you following?

[Guest guest]

Way to go Vicki, have you considered the pump my bg's were really high 7.5

then I got the pump and concentrated and dropped to a 6.9 the lowest I have

ever been . With your low bg on shots you could probably get even lower and

increase your freeedom and convenience with the pump. Just a thought. I

must agree control is a lot better than the alternative.

Don and Penguinie, pumper penguin. O-

/( )\

[Guest guest]

Hi, Don, good to hear from you after long silence. Have you been lurking all

this time?

I'm glad to hear you're doing well on the pump. I've toyed with the idea but

I really don't mind giving myself the shots 4x a day...the amount of insulin

I have to take is very small , generally less than 16 units a day total

(unless I'm eating out), including 5 NPH at bedtime. What I mind most is

doing the necessary math in order to calibrate my lispro with carbs. And this

wouldn't change even with the pump. Vicki A.

In a message dated 99-11-09 15:17:33 EST, you write:

<<

Way to go Vicki, have you considered the pump my bg's were really high 7.5

then I got the pump and concentrated and dropped to a 6.9 the lowest I have

ever been . With your low bg on shots you could probably get even lower and

increase your freeedom and convenience with the pump. Just a thought. I

must agree control is a lot better than the alternative.

Don and Penguinie, pumper penguin. O-

/( )\

>>

[Guest guest]

Hey everyone,

 

I am going to be visiting my brother in Dallas for a couple of days so I won't

be in here.

I didn't want anyone to get worried because no one had heard from me. I get to

go spoil my new nephew and I plan to do it up right. He will be so rotten by the

time I'm through with him that his parents may just send him home with me!

LIVE AND LET LIVE

RITA