Re: new to the group

[Guest guest]

Hey Donna, thanks for the suggestion. I did run across the medicine

Dapsone in

some literature I got off the internet several months ago and asked my

doctor

about it. He said it was such a strong medication that he would only

prescribed

it as a last effort. I didn't press the matter with him. I also

discussed

having the vasculitic urticaria with him but he wasn't convinced that I

had it.

He said " I didn't exhibit all the symptoms " . (I do know that I have

delayed

pressure urticaria.) Sometimes I feel like he just says anything to get

me out

of the office. The way he acts you'd think I spent all my time in his

office.

But I don't. I'm not one to run to him when my face, lips, tongue,

throat, etc.

swells up - after 18 years of this, I just deal with it the best I can.

Maybe if

I complained more, I'd get more action out of him. Personally, I really

don't

think he knows what to do with me. It's just soooooo frustrating. I'd

find

another doctor, but I've tried them all. Montgomery, Alabama doesn't

have a wide

variety to choose from. I'm currently trying the yeast-free diet and I

can

definitely see a difference. Thanks again for the suggestion. I've

gotten so

much good information from the group. I'm taking notes so I can

question the

doctor. He's going to hate to see me coming. Thanks again and keep the

suggestions coming. --

Missk39@... wrote:

>

> Urticaria

>

> hi theresa,you might ask about taking doxipen and dapsone together. dapsone

> is suppose to work for urticaria vasculitis(deep rooted hives) it was the

> only thing that worked for me besides high doses of steroids. just make sure

> you have your dr. monitor your blood(particularly the wbc) because the

> dapsone dropped my wbc levels and i had to stop that med., but they seemed to

> work for me. ask your dr. if this is a possibilty for you. its worth a try if

> you have these kind of hives. good luck, i have been at this for 20 long

> years...donna

>

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[Guest guest]

Hi Maureen and welcome to the

group. Sorry it has been so long since i have responded but i have not

been feeling my best. The pain is aweful but now i have a doc who is

working with me but only because i have pancreatitis.

When that is gone so will be the pain meds. I live in Tennessee I hope

you are feeling better today.

Give thanks to the Lord

Jan

[Guest guest]

Maureen,

When I spent a lot of time in hospital a year ago and then in rehab, I

remember what kind of reaction I got from the health care professionals

who REALLY knew about our illness. It's the " poor thing " kind of

treatment, but I really feel we deserve a little TLC.

I'm not much in for talking about my own case (try to shut me up later),

but we are talking about you.

For pain, and there are many different kinds:

For my trigeminal and other kinds of neuralgia (the burning pain and the

ice-pick-behind-the-eyes) I take Neutontin and Klonipin. They were

developed for seizures, but are used for pain very widely now (not so

when I started taking them 7 years ago, but I'm so glad that they're

more prescribed now).

I take Vioxx -- for the osteoarthritis I have after being on prednisone

(which they gave me partially for my pain).

I also have a Duragesic 100 mcg patch which I change every three days.

It works like a smoking patch and delivers fentenyl -- an opiate.

The last two pills I take aren't directly for pain but they help me

cope. First, I am on Zyprexa for depression/anxiety/psychosis.

Sometimes I can get very suicidal just because I have this damn

illness. But I'm feeling better. The last pill is Ambien -- a great

sleeping pill that helps you sleep even through terrible pain and leaves

you without hangover.

I also take Advair and Nasonex for my respiratory health, and actonel to

try to reverse the damage being on 60 mg of pred. daily for over a year.

Whew! I'm not sure that's it. OOPS!!!!! one more. I have to take

prevacid for acid reflux. The prednisone also ripped up my stomache and

everything on the way.

Soooooooo. As you can see there's a lot available. But TELL YOUR DOC.

You are not being any kind of hero if you just " tough it out. " The

ones who suffer most are the ones around you all the time that you are

gritting your teeth while totally distracted!

Take care,

REnee

maureen teague wrote:

>Hello my name is Maureen and I'm new to the group.I

>just wanted to say hello and introduce myself. I'm a

>34 year old divorce mother of 3 who had neurosarcoid

>since March 1,2003,if anyone could give me any advice

>on what to do about the horrible pain(pain meds is not

>working)I would greatly appreciate it.Hey,I'm from

>B'ham,Al.if anyone in the group is from here also and

>know of a good doctor let me know.

>

>

>

>

>

>

>

[Guest guest]

April, welcome to the listserv. Usually, the first year is the most

difficult for most families, somehow things tend to settle down a bit after

that and you get into a routine. Cody is a little doll, I just went to see

his pictures at the web site. I look forward to hearing more about him. My

Kennedy has right facial palsy and it has improved over time. If you go to

my personal web site (listed below my signature), you can see pictures from

when she was first born and what she looks like now. It's a very common

feature that most children who have CHARGE syndrome.

Weir

Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

new to the group

hi my name is April Goodman. My nephew Cody was diagnosed with the

CHARGE syndrome. He will be a year old on January 30. He has had a

lot of problems throughout the first year of his life. he has almost

passed away on us several times. He quit breathing for 6 minutes.

When he was born he weighed 4lbs 15 oz. The umbilical cord was

around his neck and he was not breathing. He has only cried one time.

He does not cry now and barely makes any facial emotions. He is just

now smiling a little. It looks as though he has had a stroke on the

right side of his face. He can't sit up or crawl yet.

He had the mech tube when he was first born and now has the button.

He is on ozygen and heart monitors at night. He also has a constant

feed machine and has to eat every three hours. He only takes about 4

ounces of milk at a time.

Cody has a Speech therapist, Occupational therapist, Physical

therapist, A dietician, at home nurse, and many more. He has so many

doctors that I can't keep up! He has had tubes put in his ear and

still it doesn't seem to be really helping him hear. His eye doctor

referred him to VIPS (Visually Impared ....)

i will be glad to talk more about Cody in the future.

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!

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