Re: Question

[Guest guest]

klbates2@... wrote:

> What is the yellow stuff coming from KK's g-tube. this has happened

> twice. Some yellow stuff comes up with the formula.

>

> Do I need to call the Doctor?

>

Korey,

What kind of tube does KK have? Is it a MIK-KEY or a foley catheter or

some other type??

One thing to consider is that if the tube is a foley or the like and can

migrate into the intestine by mistake it is possible to get some yellow

stuff that actually could be some bile from the jejeunem. That's my only

guess so far from what you have said.

Did this yellow stuff just start or have you seen it before?

Do you notice anything else associated with the yellow stuff??

Take good care and let us know what's up.

Kendra, and Camille's Mom

Portland, OR

[Guest guest]

klbates2@... wrote:

>

> From: klbates2@...

>

> What is the yellow stuff coming from KK's g-tube. this has happened

> twice. Some yellow stuff comes up with the formula.

>

> Do I need to call the Doctor?

>

> Korey mom to KK

> ___________________________________________________________________

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

>.Korey,

Sounds like bile to me. Probably nothing your doc. will do about it

right away but it could be important, especially if KK doesn't have a

fundo.

Jeanie Colp

mom to MacKenzie 8mos.CHARgE, Tyler 7, & Zachary 4

Nova Scotia, Canada

[Guest guest]

Jeanie,

KK does have a fundo, and I have read you guys talking about bile. but I

don't really know what it is. Ilooked it up in the dictionary, but

didn't really understand.

Korey mom to Kayla

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[Guest guest]

,

KK has a MIK-Key button. About the yellow stuff. I saw it about a week

ago. Then yesterday. I didn't see anything else accept the formula. It

almost looked as if she had mustard come up. But she didn't eat mustard.

So I don't know what to do.

Korey mom to KK

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[Guest guest]

klbates2@... wrote:

>

> From: klbates2@...

>

> Jeanie,

>

> KK does have a fundo, and I have read you guys talking about bile. but I

> don't really know what it is. Ilooked it up in the dictionary, but

> didn't really understand.

>

> Korey mom to Kayla

> ___________________________________________________________________

> You don't need to buy Internet access to use free Internet e-mail.

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> or call Juno at (800) 654-JUNO [654-5866]

>

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

>.Korey,

If KK has a fundo at least you don't have to worry about her

refluxing the bile<which is very nasty>.

Bile is made by the liver and is stored in the duodenum, where it

breaks down fats and aids in digestion. The duodenum is connected to the

stomach by the pylorus muscle. If a child has bad enough reflux it can

cause bile gastritis, which is what MacKenzie has, only she can't have a

fundo so she in turn refluxes and aspirates the bile<sorry, that isn't

what you wanted to know>. Problems with the pylorus muscle can also

cause this to happen, as can just a bad stomach flu. I don't know how

much of a problem this may be for KK, but I do know that continuous bile

in the stomach can cause ulcers. It sounds like something you may want

to mention to your docs. Although it sounds as if you've been having

about as much luck as us when it comes to docs.*^ & ^$%.I have definately

learned one thing in the past 8mos. Doctors aren't always right,

especially surgeons! They have a one track mind and just want to get in

there and fix everything, quick quick quick. They're also arrogant as

hell, at least all of them at our hospital are.Good luck.

Jeanie Colp

mom to MacKenzie 8mos. CHARgE, Tyler 7, & Zachary 4

Nova Scotia, Canada

[Guest guest]

Doctors aren't always right,

> especially surgeons! They have a one track mind and just want to get in

> there and fix everything, quick quick quick. They're also arrogant as

> hell, at least all of them at our hospital are.Good luck.

>

Go get em Jeanie!!! Dr Lawlor..I say we lynch him!!!

<Jeanie and I go to the same hospital in case you are wondering about

this inside joke!>

Mom to Kennedy 1 yo CHARGEr, 9, 7, and wife to Graeme

New Brunswick, Canada

--

Graeme & Weir

gweir@...

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

*ICQ* UIN:1426476

*AOL Buddy* - Kawfolks

[Guest guest]

Jeanie,

At first we thought she only had the Acid Reflux, but on her last PH

Study we found out that she also had Alkiline Reflux also. That was the

breaking point of wheather or not to do the surgery. After her levels

were so high on the Alkiline we said ok to the surgeries.

And the nurse tht was suppose to come here today, I guess didn't realize

it was a holiday, so it won't be until Wed. when she comes. But I will

ask her GI clinic or her nurse.

Korey mom to KK

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[Guest guest]

Hartshorne wrote:

>

> From: 3zlrtdh@... ( Hartshorne)

>

> >From: klbates2@...

> >

> >What is the yellow stuff coming from KK's g-tube. this has happened

> >twice. Some yellow stuff comes up with the formula.

> >

> >Do I need to call the Doctor?

>

> Korey, it can't hurt to have it checked, but gets yellow stomach acid

> from his tube a lot. It looks just like what comes up if he vomits. All I

> know is that any stomach acid or contents that come up I am supposed to not

> dump out, but put back in with the feeding so the electrolytes will stay in

> balance. Does it just look like stomach acid to you? I thought bile was

> green. But What do I know? , mom to (9) ChArGE

>

> S. Hartshorne

> .Hartshorne@...

>

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

,

Bile can be dark green to light yellow, believe me we've seen lots of

it in the past months.

Jeanie Colp

mom to MacKenzie 8mos.CHARgE, Tyler 7, & Zachary 4

Nova Scotia, Canada

[Guest guest]

MAY181998@... wrote:

>

> From: MAY181998@...

>

> I was curious to find out if any mother of a CHARGEr was diagnosed with

> cervical dysplasia before they got pregnant with their CHARGEr? If this is

> too personal just say so. I'm just curious because I was told I had pre-

> cancer of the cervix after Devin was born and was told that I'd never have

> anymore children and more than likely have to have a hysterectomy (at 18 years

> old). Surprise.... That fortunately never happened I changed doctors, but my

> other docs did tell me my chances of ever becoming pregnant were very slim

> because of all the treatments and scar tissue.

>

> I guess I'm just picking my brain and was curious about this... I'm not sure

> if this is something appropriate to send to the list but I figured I'd throw

> it out there.

>

> Thanks

>

> Kim

> mom to Devin 8 yrs. and Saleah 10 mo. (CHARGE)

>

Kim,

I'm not responding to your question, but to your comment on asking

an inappropraite question, I really don't think there is such a thing

here. Everyone has been through such similar experiences that I think we

can talk about anything. Last week I asked some questions about marriage

and got some wonderful, personal replies.

Jeanie Colp

mom to MacKenzie 10mos.CHARGE

P.S. When is Saleahs' birthday? I've just realized that she and

MacKenzie are the same age.

[Guest guest]

Kim,

I was reading through the list, and I ran across yours asking about the

cervical pre- cancer stuff. I actually had a colposcopy done while pregnant

with Tyler, but it didn't show anything(however my doctor also ignored all of

my symptoms of having a high-risk pregnancy. That's a story for another day).

However, I am going through the same stuff again. I just had a portion of my

cervix removed in a LEEP procedure. I didn't have anything abnormal until

right before I got pregnant, during and now. I had only an abnormal pap here

and there before I had my daughter. I don't know if this helps any, but I

just thought I would share.

Kim Menne, mother of Tyler, 15 mos Charge, and Raychel, 2 1/2, and wife to

Craig

[Guest guest]

Kim,

I had the same stuff done. I went to a specialty clinic for about 4 years (up

until about a year and a half before I got pregnant with Saleah). I also had

the LEEP done (not a fun experience). Thanks for responding to me - so far

you're the only one I've heard from on this. I was just curious if there was

anyone else that had gone through this before having their CHARGEr or if I was

the only one.

Kim

mom to Devin 8 yrs. and Saleah 10 mo. (CHARGE)

[Guest guest]

CRAIGM22@... wrote:

>

> From: CRAIGM22@...

>

> Kim,

> I was reading through the list, and I ran across yours asking about the

> cervical pre- cancer stuff. I actually had a colposcopy done while pregnant

> with Tyler, but it didn't show anything(however my doctor also ignored all of

> my symptoms of having a high-risk pregnancy. That's a story for another day).

> However, I am going through the same stuff again. I just had a portion of my

> cervix removed in a LEEP procedure. I didn't have anything abnormal until

> right before I got pregnant, during and now. I had only an abnormal pap here

> and there before I had my daughter. I don't know if this helps any, but I

> just thought I would share.

>

> Kim Menne, mother of Tyler, 15 mos Charge, and Raychel, 2 1/2, and wife to

> Craig

My sister had the exact same thing done about 6 months ago. She has one

boy, but he has no problems, other than he is taking a really long time

to talk< he's six>.

Jeanie Colp mom to MacKenzie 10mos.CHARGE

[Guest guest]

Hi Merry,

I am a nurse who is also a diabetic. The blood glucose checks measure your

current status. If you are in good control, there is no need to check your

urine. For sugar to spill over into the urine, your blood glucose needs to be

fairly high for a period of time. So when you check your urine, you are

checking

what happened prior, rather than the current. In the old days, before we had

the

accurate meters we have now, you had to check your urine and guess. Thank

goodness for the new and improved! (You can always ask your MD whether he thinks

you need urine checks.)

Take care,

Dottie in Virginia

Om8421@... wrote:

> From: Om8421@...

>

> I have read on the list that many people are test their urine as well as

> their GB. What are U checking for? Should I be doing this too?

> Thanks, Merry

>

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

> You can now easily share photos and documents with your fellow list members

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[Guest guest]

In a message dated 99-04-02 19:23:21 EST, you write:

<< Is their any Doctor or Clinic that specializes in CHARGE, any where in the

United States?

>>

Amy,

To answer that the best I can. No.... But Meg is a geneticist here on the

list and she's as specialized as you're going to get. If you ever have any

serious questions that you just can't get the answers, she has probably

studied CHARGE more than anyone else. (Am I right Meg?)

As you know, CHARGE is a " collection " of anomalies, and not ONE person is

going to " specialize for all the anomalies, that's why you have so many

doctors, but as far as CHARGE facts in general, Meg's your woman.

Whenever I need a specific question answered, I just e-mail her personally.

There are different types of geneticists and my personal geneticist, Dr.

Rosenbaum, does NOT belong to the Foundation, but in my area, he

knows more about it than anyone else if I need a referal to a doc in my

particular area. He has alot of CHARGE patients that he follows on a regular

basis, but I don't know how much he's into just that because he deals with

Downs, and any other genetic problems.

I hope this helps.

Foley

Mom to 3 1/2, , My CHARGE guy in heaven, and Jillian 1 w/cHaRgE

in Virginia

[Guest guest]

Hi Merry,

If you use a meter to check your bg - blood test and if you measure it to be

under the max-border 10mmol/l, then the level of sugar in the urine should

neither be to high. The problem is when the bg gets over the 10mmol/l ( x 18 =

180 - us measure) border. That's a sign that the bg is not sufficiently absorbed

(diab. II - don't know with diab. I's). I have not been a diabetic for so long,

but doesn't it sound as logic? The level of bg can be measured in both urine and

blood - but more precise in a blod test. - There may be some other reasons to

measure sugar in the urine, but I don't know for what reasons. I hasn't been a

diabetic for so long and has not experienced so many complications to it.

Best regards

Question

> From: Om8421@...

>

> I have read on the list that many people are test their urine as well as

> their GB. What are U checking for? Should I be doing this too?

> Thanks, Merry

>

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

> You can now easily share photos and documents with your fellow list members

> http://www.ONElist.com

> Check out our homepage for details on how to use our new shared files feature!

>

[Guest guest]

Keytones.

See http://diabetes.cbyc.com/topics/ketones.html

You should ask your doctor when to check, but I've heard if your BG is over

240 mg for a few days in a row, then you should test.

Question

>From: Om8421@...

>

>I have read on the list that many people are test their urine as well as

>their GB. What are U checking for? Should I be doing this too?

>Thanks, Merry

>

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

>You can now easily share photos and documents with your fellow list members

>http://www.ONElist.com

>Check out our homepage for details on how to use our new shared files

feature!

[Guest guest]

Merry asks:

<< I have read on the list that many people are test their urine as well as

their GB. What are U checking for? Should I be doing this too? >>

Merry, I had suggested that only to folks who sometimes just can't stand the

thought of yet another finger-stick. Urine testing is better than nothing -

but finger-sticks give more accurate, timely info. Glucose doesn't spill

over into the urine until you hit your " renal threshhold, " which for many

folks is around 180 on your bg's. So it would be helpful only for folks

whose control isn't real good ... after a big meal, etc. There are several

brands, but they are sometimes hard to find. I used to use the Keto-Diastix,

which showed both urine glucose levels and ketones, when I first lowered my

carbohydrate intake. They are expensive, and I had to order a whole case

from WalMart to get them. But you can get KetoStix or DiaStix, or other

urine strips/tapes, from various pharmacists. We can have ketones in our

urine both from having extremely high glucose levels (unhealthy diabetic

ketoacidosis) and from really bearing down on our carbohydrate intake

(benign ketosis).

Susie

[Guest guest]

In a message dated 4/16/99 5:56:22 AM US Eastern Standard Time,

gduffett@... writes:

<<

When I send a message to the type 2 list, does it also go to diabetes@

one list?

Gail

>>

I was not aware that there is a type 11 list how do I find it?

Merry

[Guest guest]

When I send a message to the type 2 list, does it also go to diabetes@

one list?

Gail

[Guest guest]

Merry

Just go to the internet and type in www. typetwoonelist and become a

member.

Gail Duffett wrote:

>

>

> When I send a message to the type 2 list, does it also go to diabetes@

> one list?

>

> Gail

>

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

> You can now easily share photos and documents with your fellow list members

> http://www.ONElist.com

> Check out our homepage for details on how to use our new shared files feature!

[Guest guest]

http://www.onelist.com/viewarchive.cgi?listname=Type2diabetes

http://www.onelist.com/viewarchive.cgi?listname=TypeTwo

Re: Question

>From: Om8421@...

>

>In a message dated 4/16/99 5:56:22 AM US Eastern Standard Time,

>gduffett@... writes:

>

><<

>

> When I send a message to the type 2 list, does it also go to diabetes@

> one list?

>

> Gail

> >>

> I was not aware that there is a type 11 list how do I find it?

>Merry

>

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

>Are you hogging all the fun?

>http://www.ONElist.com

>Friends tell friends about ONElist!

[Guest guest]

Don, this sounds pretty high carb to me. Checking my Netzer book, corn

flakes has 26 carbs; orange juice 1/4 cup has about 15, two pieces toast

must be 40+. (Do you mean wheat bread? Whole wheat?). Vicki

In a message dated 99-06-07 22:35:05 EDT, you write:

<< ,

I have 1cup corn flakes or cheerios, 8oz. skim milk, 4oz. orange juice or

cranberry juice, Sweet n'Low sweetener, 2 slices of brownbread toast, and a

cup or two of coffee. Then I start my day.

Don and Penguinie who has kippers snacks O- >>

[Guest guest]

Hi Susie,

With astute carb counting and knowing my ins./carb ratio (1u:6 carbs) and how

much each unit brings down the grams 1u dropping 28 grams, I am able to

remain pretty stable. I have a light lunch of 2 slices brown bread, low fat

cheese,l nofat mine meat and 8oz. skim milk and if I am going to exercise I

have a half cup of chicken noodle soup, even thaen I fiand I need a snack

after nine holes of golf before completing the second nine.

Don and Penguinie the pumper penguin O-

/'()\ diabetic

penguins are not good caddies unless you have cod or shrimp along.

[Guest guest]

Susie is a blessing,if she doesn't know the info she finds it

[Guest guest]

writes:

<< So far my brother has only spoken to the staff ,,, of course the staff

has yet to call us on anything,had we not called he still would know

nothing. I considered suggesting he call his

primary or his ins co. >>

I would demand to speak to the doctor personally. I have worked in several

doctors' offices and seen them run both professionally and with almost no

oversight. You should not have to wait this long.

<< The light info was very helpful,I will pass it on to him, we had not seen

that

as an alternative but we had not began to look yet. >>

If you grab a good search engine such as http://www.altavista.com and do a

search by typing in in quotation marks " Barrett's esophagus " you will be

pleased with the many helpful sites. Just a year ago, Harvard was looking

for subjects to test this new procedure. There is an email address. Who

knows? Maybe he could get into one of these tests! They were doing research

in Knoxville and Boston too.

Susie