RE:

November 18, 2004

Hi ,

Josh had quite a positive experience for his palate surgery ... it

didn't seem as painful as i had thought it would be, he didn't have

difficulties with lots of blood or secretions beyond the first night ...

he was suctioned a couple of times - the plastic surgeon was keen for as

little suctioning as possible so as to not bump any of the repair...so

we positioned him in a way that any extra could dribble out too while he

was sleeping. He spent the night in the ICU (as a precaution), but,

moved up to the ward after that, barely there 24hours iirc, and the

overall stay was only three days - as he was gtube fed we didn't have to

get him eating before discharging.

i was concerned about how to rinse out his mouth after having tastes of

food, and he was not cleared for water to drink ... it turned out to be

very easy ... i simply held him on my knee and had a 5ml syringe of

water that i gently squirted into his mouth while leaning him forward so

it could run out again - he quite liked it funnily enough, we still do

this on occasion as he is still not safe with water to drink but loves

it in his mouth.

unfrtunately, he will probably have to go through the experience again

at a later stage, as he has a fistular that has opened up since ...

anyway, if you have any q's feel free to ask,

Jo

ds Ben 5, ds Josh 2

Mark wrote:

>I've heard the palate surgery is tough- its the anesthesia I get

>worried about- Sara was re-inhibated three times after her last

>surgery. When they took the tube out in recovery she turned blue.

>I also worry about her managing all the blood and secretions that

>will be in her nose and mouth in the weeks during recovery!

>

November 18, 2004

Ellen and Joanne,

thankyou for your experiences.. I'm a little more at ease from

hearing about successful recoveries!

MARK

>

> >I've heard the palate surgery is tough- its the anesthesia I get

> >worried about- Sara was re-inhibated three times after her last

> >surgery. When they took the tube out in recovery she turned

blue.

> >I also worry about her managing all the blood and secretions that

> >will be in her nose and mouth in the weeks during recovery!

> >

December 8, 2004

WHAT?! They lost him for 1/2 hour! WHAT?!

The finger being smashed sounds like it could happen to anyone but loosing

him? Where was he and who found him? Most of all how in the world was he lost

for that long? I would be more than angry. A 1/2 hour? I just find that

incredible. And then to have the finger smashed after loosing him is just

horrible.

I am also sorry to hear that is in the hospital. The poor guy has

been through tons. You too.

You must be better than me. I would have gone to his school and reamed

someone out for that one. And then when I was done I would make them write an

appology to him, and sign it in ink!

Bonnie, mom to a 22, Patty CHARGE 20, and wife to

December 9, 2004

It is scary what happens when the Intervener takes their break.

Kim

>

> WHAT?! They lost him for 1/2 hour! WHAT?!

>

> The finger being smashed sounds like it could happen to anyone but loosing

> him? Where was he and who found him? Most of all how in the world was he

> lost

> for that long? I would be more than angry. A 1/2 hour? I just find that

> incredible. And then to have the finger smashed after loosing him is just

> horrible.

>

> I am also sorry to hear that is in the hospital. The poor guy has

> been through tons. You too.

>

> You must be better than me. I would have gone to his school and reamed

> someone out for that one. And then when I was done I would make them write an

> appology to him, and sign it in ink!

>

> Bonnie, mom to a 22, Patty CHARGE 20, and wife to

>

December 9, 2004

Vicky-

We've have had feedback problems when Aubrie had grown to the point that

the molds no longer fit properly and needed to be replaced and when

we've had the volume set too high. I wonder too if wax on the mold

could interfere with proper fit and cause feedback. Since this has

developed since the volume change, it seems most likely that that's the

culprit on the feedback.

Michele W

>

December 9, 2004

When still needed hearing aids (oh, that she still needed them!), we

had feed back when she needed new molds or when the molds weren't

sufficiently tight in her ears. I had to argue with the ear mold maker who

just said that no one needed ear molds made so frequently. He was

wrong, and Andy and I were right. Granted I'm used to " old " hearing aids,

and things may have changed, but feedback often means that the fit isn't

right. Martha

December 9, 2004

Oops. I forgot. At times, increasing the volume on the aid definitely caused

feedback. We never solved that one. Martha

December 10, 2004

Yes, I don't know how this gets handled. I had the same question with

Aubrie, but haven't really dealt with it. I guess they can only be

corrected so far and that's that. Good question.

Michele W

Sirota wrote:

> Michele,

>

> The audiologist lowered the volume setting today and

> this seemed to have taken care of the feedback.

> However, if needs the higher volume to hear,

> won't this be a problem?

>

December 10, 2004

my son anthony won't keep the hearing aids on very long, but when we

do get occasional feedback, it is usually time to get a new mold

made. we are lucky that his aids have a feedback volume control. we

were able to get him a really good aid that can correct some feedback

issues on its own, for the most part. if you can you might want to

see about getting the digital senso diva. we went with that because

anthony has one good ear when it is aided, so we only have one aid.

as far as, if you think he is missing info you might want to discuss

that with your audiologist or ent. good luck.

mom to anthony 18 month old CHargEr

>

> > Michele,

> >

> > The audiologist lowered the volume setting today and

> > this seemed to have taken care of the feedback.

> > However, if needs the higher volume to hear,

> > won't this be a problem?

> >

December 12, 2004

tim has feed back w/ wax in his ear--which tends to build up quickly because

of tiny ear canals. also when mold isn't right and volume--all culprits of

feedback.

Re:

>

> Vicky-

> We've have had feedback problems when Aubrie had grown to the point that

> the molds no longer fit properly and needed to be replaced and when

> we've had the volume set too high. I wonder too if wax on the mold

> could interfere with proper fit and cause feedback. Since this has

> developed since the volume change, it seems most likely that that's the

> culprit on the feedback.

>

> Michele W

>

> >

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

January 2, 2009

Hi ,

I have a hard time swallowing this one. He is focusing on only one part of

the picture. Yes diet is important and can have significant results.

However, and let's be realistic, how many people truly have the discipline

and dedication to follow the diet necessary to pull off these results all

the time? Not only that, people who do follow their diet closely still need

meds to help. The fact is their bodies have a problem where certain

functions do not work as they should. But the most important, the article

says they took people who had been not in good control for this study.

Remember, damage was going on before they were put in control. It's like

closing the barn door after the horse is already out. Here's an example

from my own life. My brother who was diabetic for 50 years had a

kidney/pancreas transplant making him no longer a diabetic. He is now

having many of the complications that diabetics have of losing fingers,

toes, etc. because the damage has already been done all those years he was

diabetic. All I'm saying is I'm having a hard time with this one and one

should really read articles thoroughly befor believing a word that is said.

Thanks for submitting the article.

Ruth

From: blind-diabetics

[mailto:blind-diabetics ] On Behalf Of SS

Sent: Thursday, January 01, 2009 11:08 AM

To: blind-diabetics

Subject:

I really respect the dedication and science of this man. I should say, I

had much more respect and paid much closer attention to him before he became

successful and began having to attract more and more attention to support

the business he built up. Now he sometimes sounds a little hysterical in

his proclamations. But, doesn't that seem to happen to all of them. I

include the address for notes and references and further reading.

The McDougall Newsletter - Favorite Five Articles from Medical Journals

December 2008

<<< Return to Newsletter Home Page Printer Friendly pdf

Vol. 7, No. 12

Favorite Five Articles from Recent Medical Journals

Undeniable Evidence: Diabetes Treatments Do More Harm Than Good

Glucose Control and Vascular Complications in Veterans with Type 2 Diabetes

by Duckworth in the December 17, 2008 issue of the New England

Journal of Medicine found, " Intensive glucose control in patients with

poorly controlled type 2 diabetes had no significant effect on the rates of

major cardiovascular events, death, or microvascular complications. " this

study, called the Veterans Affairs Diabetes Trial (VADT) was of 1791

military veterans (mean age 60.4 years) who had a suboptimal response to

therapy for type-2 diabetes. They were assigned to receive either intensive-

or standard-glucose control and studied for 5.6 years. The

intensive-therapy reduced the Hemoglobin A1c levels to 6.9%; compared to

8.4% in the standard-therapy group. The patients were also put on aspirin

and a statin.

A weight gain of 18 pounds occurred with the intensive-treatment compared to

9 pounds with standard-therapy. There were 95 deaths from any cause in the

standard-therapy group and 102 in the intensive-therapy group. In the

intensive-therapy group, the number of sudden deaths was nearly three times

the number as those in the standard-therapy group (11 vs. 4). More patients

in the intensive-therapy group had at least one serious adverse event,

predominantly hypoglycemia, than in the standard-therapy group.

These pharmaceutical companies-Sanofi-Aventis, GlaxoKline, Novo

Nordisk, Roche, Kos Pharmaceuticals, and Amylin-provided medications and

financial support for the study.

Comment: This is the third industry-funded study published this year showing

aggressive treatment hurts patients. On June 12, 2008 the ACCORD* trial and

ADVANCE** trials were also published in the New England Journal of

Medicine.2,3 Together, the effect of these three well-designed randomized

studies should be enough to halt aggressive prescribing of diabetic pills

and insulin to type-2 diabetics. Will this overwhelming evidence change how

doctors practice? Probably not. Drug companies have millions of advertising

dollars dedicated to emphasizing any slight benefits their drug treatments

may show and minimizing the harms. In this manner they convince doctors to

prescribe and patients to buy useless and harmful products. Most doctors

are too afraid of lawsuits to stand up for the patients and against the drug

companies. To change current practice, doctors need to fear being sued for

too aggressively treating patients. Even more, they need to fear being sued

for failing to prescribe the correct treatment for type-2 diabetics-a change

in diet. None of these three studies published in one of the world's most

prestigious medical journals taught dietary and lifestyle modification to

their patients.

Currently, Food and Drug Administration (FDA) approval for a diabetic

medication requires evidence that the drug will lower blood sugar-not that

it improves the patient's life. The title of my February 2008 newsletter

describes the results of such narrowly focused therapy: " Intensive Therapy

Means Dying Sooner with Better Looking Numbers. " The FDA is as of December

2008 recommending that all new drugs developed for the treatment of type-2

diabetes show that they do not increase the risk of cardiovascular events.

However, this is not a requirement, just a recommendation or suggestion to

the pharmaceutical companies.4

Eating the rich western diet causes type-2 diabetes. My February 2004

newsletter provides details on the cause and how a change in diet will cure

essentially all type-2 diabetics-at the same time causing them to lose

weight, reverse heart disease, and dramatically improve their overall

health.

http://www.drmcdougall.com/misc/2008nl/dec/fav5.htm

January 2, 2009

Ruth, two points. First how unrealistic the diet is Well, isn't that the

reason that the ADA/AMA recommend a A1C that is higher than many believe is

healthy. It is recognized that very few people will meet the 5 or so A1C

and so not to totally discourage patients, 6.5 or 7 is set as the goal. Of

course, there are more than a few here who will say doctors and

pharmaceutical companies want to keep people needing their services/products

so they keep them sick. Yes, right here among these totally intelligent and

informed people you can hear that said. I don't think because not everyone

can meet a goal is no reason not to recommend it and hope that you can help

a few.

With regard to the patients being out of control at the time of the study,

aren't most diabetics (Type II) out of control by the time they see a doctor

and are started on medications. It would have been unrealistic for them to

do such a study on controlled diabetics. Also, the criticism that they did

not include lifestyle changes as part of the regimen mirrors what real life

doctors do with their patients everyday. Sure they give you the

recommendation to exercise and lose weight, but in 15 minute visits they

really don't do much to expand on how to do it or reinforce it.

You surely did have it right when you said carefully read everything,

though. It is very tough to get a totally objective study of anything.

Studies are hard to perform and very expensive and someone not having some

interest in the subject will not spend the money for it. We could say the

government should be conducting such research, but on one hand we complain

the government doesn't do enough and on the other that our taxes are too

high.

I guess we all know there is not a perfect weapon to fight this damned

disease, but hopefully all we share and all we read give us some ammunition

that will fit the gun each of us holds.

January 2, 2009

Hi eric,

I also agree with your points. I just think it could have been written more

in a way to point out how important diet is instead of leaving you with the

impression that they are ttelling you don't take meds because diet is all

you need which read by the average person who knows nothing about diabetes,

could be very harmful. We all know it is the balance of diet, exercise and

meds that help us to live longer in a healthy way. If it was diet alone

wouldn't it be great? As you said, this is a damned disease and as I say,

diabetes is the disease that keeps on giving whether you want it or not.

Ruth

From: blind-diabetics

[mailto:blind-diabetics ] On Behalf Of SS

Sent: Friday, January 02, 2009 4:45 PM

To: blind-diabetics

Subject: RE: