(No subject)

[Guest guest]

Hi

Thanks for replying. It seems to me that there are quite a few people on

here with CU and are on thyroid medication. I thought that maybe there was

a connection. I dont know if I told you they increased my thyroid med and I

am having more hives and swellings then before.

Also tomorrow I am going for acupuncture. I hope it works. Also many people

have tried it. Some it worked for and some are still waiting for results. I

am willing to try anything at this point. How frustrating it is for us.

I'll let you know how I make out with this new venture.

Be back to you soon.

Sandy

[Guest guest]

In a message dated 07/31/2000 5:47:07 PM US Mountain Standard Time,

FiveAlive76@... writes:

<< Also tomorrow I am going for acupuncture >>

Let us know what happens with the acupuncture. I've toyed around with the

idea of having it done for my angio, but my health plan doesn't cover it and

I didn't want to pay out of pocket unless there was a good chance it might

help.

is

[Guest guest]

Sandy,

Don't blame it on the Italians ( of which I am one), blame it on the tomato!

Try Alfredo sauce instead! How about Pasta Primavera? There's more to

Italian food than tomato sauce!! Citrus is a common allergen. Do you have

problems with oranges, grapefruit, or strawberries? I am allergic to

strawberries but no problems with other citrus.

Take Care,

Tammy in MI

(no subject)

> I think Italian food is causing me swelling. Every time I have sauce

(red) I

> get swelling especially on my tongue which makes me so nervous. I had

that

> the other night and I kept taking benedryl. I thought I would have to go

to

> the ER but it finally started to go down. Does anyone else get that

> reaction.?

>

> Keep in touch. I need all the support I can get

>

> Sandy

>

>

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

_______________________________________________

Why pay for something you could get for free?

NetZero provides FREE Internet Access and Email

http://www.netzero.net/download/index.html

[Guest guest]

The best bra I found is an all cotton bra by Hanes Her Way that closes in

front. It has no underwire either. I found it at Wal-Mart, think it was

$9.99. It's been a godsend on days when everything else hurts!

To: <urticariaegroups>

Sent: Monday, July 31, 2000 10:54 PM

Subject: (no subject)

> In a message dated 07/29/2000 11:49:44 AM US Mountain Standard Time,

> jlwilhide@... writes:

>

> << Does anyone know of a certain bra/underwear that doesn't bind so much

>

> and doesn't cause pressure hives?

>

> I wear bras that don't have the underwire in them. They work much

> better for me.

>

>

>

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

_______________________________________________

Why pay for something you could get for free?

NetZero provides FREE Internet Access and Email

http://www.netzero.net/download/index.html

[Guest guest]

, When my hives get really bad, I have to do a 60 mg Pred taper, and

sometimes that doesn't work, so I have to get IV Solumedrol. We can't be

afraid of large doses. For years I didn't take enough of anything, and

suffered.

Judy

[Guest guest]

I don't know about Judy, but I do! After taking large doses of prednisolone

(which in my own experience never did anything for my urticaria or

angioedema) I'm now about two (more?) stone heavier (all 'bloated') and have

serious joint pain, and a total change in metabolism. I used to run around

doing athletics, skiing and serious tennis - and I used to win! Not any

more!

Re: (no subject)

>

>

>

> , When my hives get really bad, I have to do a 60 mg Pred taper, and

> sometimes that doesn't work, so I have to get IV Solumedrol. We can't be

> afraid of large doses. For years I didn't take enough of anything, and

> suffered.

> Judy

>

>

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives).

> We strive to support and lift each other as a worldwide cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with

> Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a

> prefix of NCU -. This is done out of respect for those who do not wish to

read

> such postings.

>

>

>

>

>

>

>

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

I don't know about Judy, but I do! After taking large doses of prednisolone

(which in my own experience never did anything for my urticaria or

angioedema) I'm now about two (more?) stone heavier (all 'bloated') and have

serious joint pain, and a total change in metabolism. I used to run around

doing athletics, skiing and serious tennis - and I used to win! Not any

more!

Re: (no subject)

>

>

>

> , When my hives get really bad, I have to do a 60 mg Pred taper, and

> sometimes that doesn't work, so I have to get IV Solumedrol. We can't be

> afraid of large doses. For years I didn't take enough of anything, and

> suffered.

> Judy

>

>

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives).

> We strive to support and lift each other as a worldwide cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with

> Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a

> prefix of NCU -. This is done out of respect for those who do not wish to

read

> such postings.

>

>

>

>

>

>

>

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

I do think we should be wary of large doses though. Loads of doctors seem

to bang prescriptions off to patients on this list willy-nilly, and we take

the drugs because they're the doctors and they tell us to.

I reckon it's always worth asking them the reasoning behind it - they might

be doctors but they haven't got your urticaria so don't allow them to start

telling you what will make you better if they really don't know what is

causing it or how you feel.

I started taking Atarax yesterday and yet it seems Atarax might not be a

sensible drug to take if one wants to conceive. My prescription is quite a

high dosage on the recommendation of my GP , who I must add is aware that I

have had five (poss 6) miscarriages and therefore clearly knows I want to

start a family. Naturally I am not taking any more until I have spoken at

length with my doctor.

Re: (no subject)

> , When my hives get really bad, I have to do a 60 mg Pred taper, and

> sometimes that doesn't work, so I have to get IV Solumedrol. We can't be

> afraid of large doses. For years I didn't take enough of anything, and

> suffered.

> Judy

>

>

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

Thanks for the good explanation. I just had not seen anyone who had both the

RAI and was taking ATDs at the same time.

You all here are so up on things and I have so much to learn. Whenever I met

people with thyroid diseaes I never thought of it as a big deal. I thought it

was just a matter of taking a pill and getting on with things. If only it was

all so simple.

Today there was a small disruption between my grown kids and I started to

freak out and shake all over. I feel like I am so fragile all of a sudden

Thanks, Laurie

[Guest guest]

Hi Laurie-

When a patient has RAI, as thyroid cells die they dump any stored thyroid

hormone into the system causing the patient to get even more hyperthyroid

for a time. This usually gets much better in a couple of months. Sometimes

it's so severe in the interim that some doctors prescribe ATDs for it. If

this is what's happening to you, your doctor prescribed the PTU to stop you

from making additional hormone. The beta-blockers control the heart

symptoms until the extra thyroid hormone is used up.

My endo will not suggest RAI for his elderly patients because it can bring

on thyroid storm. This can usually be recognized early enough in the

general Graves' pop. because of hyperthyroid symptoms. However, in the

elderly, they can become lethargic and depressed causing many doctors to

misdiagnose it.

I remember 3 weeks after I had RAI. I had gotten a D on a botony exam in

college and everything that I had missed had been during a portion of the

semester when I had chicken pox (around 1 week after RAI) and couldn't

attend classes. The professor knew this was out of character for me and

decided to let me take that portion of the test over (which was very kind of

her). By the time I got to her office I was so anxious and still hadn't

been able to go over the material, so I promptly missed everything again.

By this time I was hysterical and hopped into the car (not a good idea) and

drove to the hospital to see my husband (he was an intern at the time).

Anyhow, I burst in there soaked and dripping with sweat (it was early April)

in a state of panic (I thought I was going to explode!). He was able to

calm me down eventually but it is still a great source of embarassment even

after 14 years (he still works at the same place and many people can

remember the incident).

When I think back about what caused me to go off like that, sure it was

upsetting but it sure didn't warrant that kind of a reaction.

Anyhow, take care and know the symptoms will get better.

(no subject)

> Has anyone else had RAI and then a few days later put on PTU because hyper

> symptoms were so bad? I had the RAI 11 days ago and was in real bad shape

> after the third day. The doctor was afraid I was was going into thyroid

storm

> so he put me on 600 mgs. of PTU daily. I feel like hell. I am also on 200

> mgs. of Toprol(Beta-Blockers) daily. I tried skipping a dose of the Toprol

> but my heart still gets way out of control. What are the adverse affects

of

> Beta Blockers? I feel like a sick zombie. I would be looking this stuff up

> myself but I feel too sick all over to sit here.

> Years ago when I was diagnosed with high blood presure I remember they

tried

> beta blockers at first and Ican't remember why they changed them. One good

> thing about them is I am not getting constant headaches daily like I

always

> did

> Thanks, Laurie

>

>

>

[Guest guest]

Hi Laurie-

Fragile is a good word for it.

I have to tell you. I mentioned that panic incident from so long ago and my

husband told me that he was ashamed that he didn't realize what was going on

and that I was even more hyperthyroid after RAI. I said, " But you were only

an intern " . And he responded that he still should have known (they had a

small excerpt about it in med school).

Boy! I've got myself a gem of a guy. Sorry if that seems like bragging but

he's been through so much with me and he's still here.

Take care,

Re: (no subject)

>

> Thanks for the good explanation. I just had not seen anyone who had both

the

> RAI and was taking ATDs at the same time.

> You all here are so up on things and I have so much to learn. Whenever I

met

> people with thyroid diseaes I never thought of it as a big deal. I thought

it

> was just a matter of taking a pill and getting on with things. If only it

was

> all so simple.

> Today there was a small disruption between my grown kids and I started to

> freak out and shake all over. I feel like I am so fragile all of a sudden

> Thanks, Laurie

>

>

>

[Guest guest]

Welcome to the CHARGE list and congratulations on your new baby. She's

gone through quite a bit in the first four weeks - wow! We did not have to

have a trach for our daughter but she did de-sat often. She had an oral

airway because of choanal atresia for her first seven weeks which worked

well to keep things open, we tied it around her head almost like a

mask...you can see a picture of it here...

http://personal.nbnet.nb.ca/gweir/kkairway.html

I know that floppy airways can be common in CHARGE and it may be that she

does need a trach. There have been quite a few here on the list that have

been trached early on who no longer have the trach now so even if she does

need it now it doesn't mean it's forever.

Keep us posted on Whitney...

Weir

Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme

New Brunswick, Canada

Visit our family web site: http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada: http://www.chargesyndrome.ca

(no subject)

Hello. We are new to this site. We have a 4 week old, Whitney who has

been

diagnosed with Charge. She has so far had the Choanal stenosis surgery,

ASD

closure, and the Nissan Fundoplycation, with G-tube for reflux. She was

in the

NICU for the first two weeks of life, and the PICU for the next two weeks

after that. As she recovers from the stomach surgery that she had

yesterday,

they are going to observe her airways, as her oxygen levels seem to go

down

every once in a while. It may have been caused by the reflux, that would

continually get into her airways, but they are also suggesting that she

may have a

floppy airway. Does anyone have any experience with this? They are

suggesting a

possible Tracheotomy, which we are praying that she will not have to have.

Any knowledge on this subject would be appreciated. Thanks, Whitney's

Mom

[Guest guest]

Congratulations on your new baby girl!

Our daughter Rebekah had a " floppy airway " . The first week after her birth she

developed inspiratory stridor. They told us that when she inhaled her trachea

collapsed on itself because the cartilage in her trachea was floppy like the

cartilage in her ears. We called her " Squeaker " since she squeaked every time

she inhaled. It was scary because it was like she was gasping for every breath,

except when she relaxed enough in her sleep to have apneas.

Finally she had to have a trach at 18 months. She went in for a 4th Gastrostomy

and 2nd fundopication and the next day her airway shut down. After a couple of

failed trials to extubate her, the doctors, my husband and I agreed she needed

a trach.

I know it is scary and it really freaked us out that she used to make noise

constantly and after I could no longer hear her breathe from the other side of

house. The good new is that she started gaining weight and had an incredible

developmental leap shortly after that. She had been working so hard on

breathing, that all the calories we pumped into her were used for that. As

insane as it sounds, now I am scared to have her trach removed. I feel more

secure knowing she has an open airway and if she aspirates it is easier for me

to get it out.

If the time comes that Whitney needs a trach, please seek support here.

My prayers are with you and your family.

Paz,

(no subject)

Hello. We are new to this site. We have a 4 week old, Whitney who has been

diagnosed with Charge. She has so far had the Choanal stenosis surgery, ASD

closure, and the Nissan Fundoplycation, with G-tube for reflux. She was in

the

NICU for the first two weeks of life, and the PICU for the next two weeks

after that. As she recovers from the stomach surgery that she had yesterday,

they are going to observe her airways, as her oxygen levels seem to go down

every once in a while. It may have been caused by the reflux, that would

continually get into her airways, but they are also suggesting that she may

have a

floppy airway. Does anyone have any experience with this? They are

suggesting a

possible Tracheotomy, which we are praying that she will not have to have.

Any knowledge on this subject would be appreciated. Thanks, Whitney's Mom

[Guest guest]

Welcome to the list.

Kay

(no subject)

> Hello. We are new to this site. We have a 4 week old, Whitney who has

been

> diagnosed with Charge. She has so far had the Choanal stenosis surgery,

ASD

> closure, and the Nissan Fundoplycation, with G-tube for reflux. She was

in the

> NICU for the first two weeks of life, and the PICU for the next two weeks

> after that. As she recovers from the stomach surgery that she had

yesterday,

> they are going to observe her airways, as her oxygen levels seem to go

down

> every once in a while. It may have been caused by the reflux, that would

> continually get into her airways, but they are also suggesting that she

may have a

> floppy airway. Does anyone have any experience with this? They are

suggesting a

> possible Tracheotomy, which we are praying that she will not have to have.

> Any knowledge on this subject would be appreciated. Thanks, Whitney's

Mom

>

>

>

[Guest guest]

Hey Stace, Here's Dr Stern's info:

Barney J. Stern, M.D.Professor, /@IF>NeurologyExecutive Vice-Chairman, Dept. of Neurology

Email:

bstern@...

Phone:

Contact:

Address

Dept. of NeurologyThe Emory ClinicRoom A43091365 Clifton AvenueAtlanta, GA 30322

You can email him and he will get back to you...

Big Hugs,

-- (no subject)

can you send all of barney sterns info one more time...i lost it......how unlike me to lose something!.... ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

This is for MinvardS you sound just like me when I was on

80mgs of preds the preds did help but like you I had chronic

hiccups the only thing that help me was Thorazine ask your

doc about it......Quint

[Guest guest]

DeAnn-

We haven't had to do e-stim because Aubrie was able to get her tube out at age

1.5 without it. However, from the conversations on the list, I think you are

fortunate to have this new therapy available near your home. Many people have

traveled quite a distance to see Marcy Freed. Some have had remarkable success,

others have not. I certainly hope that it is successful for Whitney. I know

there are many folks on the list who will be waiting anxiously to hear about

your experience.

Michele W

mom to Aubrie (5 yrs) CHaRgE and (12 yrs)

(no subject)

Whitney is going to start this new Therapy starting tomorrow. She has never

been able to take anything orally. Only by G-Tube. I will keep you all

posted to her progress.

DeAnn, Mom to Austin 8, 6, CHARgEr Whitney 3 months

New stroke treatment offered in Randolph

By <A HREF= " mailto:jbrinegar@... " >Judi Brinegar</A>

Staff Writer, The Courier-Tribune

<A HREF= " mailto:photo@... " >Clifton </A> / The

Courier-TribuneEASY TO SWALLOW - Koenig, a

speech-language pathologist at Randolph Hospital, places a stroke therapy

device onto

Roy Rettinger's throat during a session Wednesday. Electrodes attached to a

patch, below right, stimulate the stroke patients's swallowing muscles. A

control panel, below, monitors the amount of electricity going to the

patient's

throat.

ASHEBORO - Electrical stimulation has been used in the medical field for

centuries.

Now, a new type of therapy using electrical stimulation is being employed at

Randolph Hospital with remarkable results.

Just ask Roy Rettinger of Asheboro.

Rettinger, 76, suffered a stroke on Jan. 28 and now, after just three

sessions with new VitalStem Therapy, he is swallowing foods and liquids

safely.

" I didn't have any trouble swallowing solids, but had problems with liquids, "

Rettinger said.

Randolph Hospital has been using VitalStem Therapy to treat dysphagia since

March 3 and is the only hospital in Randolph, Guilford, Alamance, Chatham,

son and Montgomery counties that can perform the treatment.

Dysphagia occurs when there is a problem with any part of the swallowing

process. People with dysphagia have difficulty swallowing and may also

experience

pain while swallowing. Some people may be completely unable to swallow or may

have trouble swallowing liquids, foods or saliva. Eating then becomes a

challenge.

Other problems include not being able to start the swallowing reflex (a

stimulus that allows food and liquids to move safely through the pharynx)

because

of a stroke or other nervous system disorder. People with those kinds of

problems are unable to begin the muscle movements that allow food to move from

the

mouth to the stomach.

Rettinger's swallowing problem occurred when he would retain fluid in his

esophagus and it would sometimes go over into his airway, causing choking

problems.

The goal is to get patients swallowing foods and liquids safely so it will

enter the stomach and bypass the lungs.

When weak throat muscles cannot move all of the food toward the stomach, bits

of food can fall or be pulled into the windpipe (trachea), which may also

result in lung infection.

Developed by Marcy Feed, a Speech-Language Pathologist in Cleveland, Ohio,

VitalStem Therapy can make a difference for the 6-15 million adults and

children

in the United States who are known to have swallowing problems.

Randolph Hospital's Speech-Language Pathologist, Koenig, M.Ed., CCC-SLP

is one of only 34 people in the world who is certified to do the treatment.

" I read about the research that had been done by Feed and then took the exam

to become certified to do the treatments, " Koenig said. " VitalStem has a 97

percent success rate with patients who go through the therapy. "

The treatments last for 5-6 consecutive days, for a total of 10 treatments.

It is non-evasive and painless.

" This treatment is great because there are no additional pills to add to my

menu, " said Rettinger. " I would have trouble just swallowing a pill before.

" I think this treatment is marvelous. It's is better than using those

lemon-flavored swabs. "

Before, the only therapy available used the swabs to initiate a gag reflex in

the throat, which stimulated the throat muscles. Koenig said that it

sometimes took 3-4 months before obtaining any noticeable results with that

method.

" With VitalStem Therapy, we are seeing results in days, " she said. " Roy just

started last week and he is able to swallow great now. "

The hospital started using VitalStem Therapy on March 3 and has had marked

success with every patient treated.

Each patient is referred to the program by their physician and will have a

formal swallow evaluation either by radiation and/or fiber optic endoscopy and

that includes inserting a fiber optic light/camera in the nose into the back

of

the throat and viewing the patient while they swallow various types of food.

" We can tell what problem the patient may have by doing this, " said Koenig.

" This will tell us how and where to place the probes to do the treatments.

" We do each program to fit the needs of the patient. If they have trouble

swallowing thin liquids like Roy, that is what we work on. If the patient has

problems with thick liquids, then we focus on that.

" The treatments are done one on one with each patient. "

During treatment, small electrodes are placed externally on the neck. The

patient will feel a crawling feeling (like a tickle, said Rettinger) and then

a

grabbing sensation.

While the machine is on, Koenig will be giving the patient trials of

foods/liquids to swallow, listening at the same time with a stethoscope for

each

swallow. The machine is timed to work for one hour, the duration of each

treatment.

" The machine is designed to be on for a certain amount of time and then off, "

said Koenig. " This gives the muscles in the throat a break. "

VitalStem Therapy actually retrains the brain to swallow involuntarily after

10 treatments and is designed to be done for 5-6 consecutive days in a row.

" Eating is such a social thing, " said Koenig. " Not being able to swallow

really limits that. "

Koenig said that the treatment is designed for patients with head injuries,

stroke, Parkinson's disease, Multiple Sclerosis, ALS (Lou Gehrig's Disease),

head and neck cancers and people that have been oxygen deprived.

" Patients that get choked easily on liquids, solids or have been told that

they can never eat again are responding to this therapy, " Koenig said. " The

treatment has been done (in other areas) on a child as young as five days old

to

the oldest of patients that haven't been able to swallow in 10-20 years. "

Koenig recommends that interested persons contact their physician and get an

order for speech therapy (with the use of electrical stimulation for Dysphagia

or swallowing difficulties).

They can then schedule a swallow evaluation by calling the Rehabilitation

Department at Randolph Hospital at 629-8835.

" Before treatment, some patients struggle just to get saliva down, " Koenig

said. " Now patients like Roy can drink the coffee he enjoys after just a few

treatments. "

[Guest guest]

I believe that the therapy will work, it takes time but it worked for me,

with my own stubborness and determination I was able to swallow over time.

What ever they suggest, do it at home too to help with the progress.

Sincerely yours; Krista Bach.

>From: wellsjdan@...

>Reply-To: CHARGE

>To: CHARGE

>Subject: (no subject)

>Date: Tue, 21 Oct 2003 01:01:56 EDT

>

>Whitney is going to start this new Therapy starting tomorrow. She has

>never

>been able to take anything orally. Only by G-Tube. I will keep you all

>posted to her progress.

>

>DeAnn, Mom to Austin 8, 6, CHARgEr Whitney 3 months

>

>

>

>New stroke treatment offered in Randolph

>

>By <A HREF= " mailto:jbrinegar@... " >Judi Brinegar</A>

>Staff Writer, The Courier-Tribune

>

><A HREF= " mailto:photo@... " >Clifton </A> / The

>Courier-TribuneEASY TO SWALLOW - Koenig, a

>speech-language pathologist at Randolph Hospital, places a stroke therapy

>device onto

>Roy Rettinger's throat during a session Wednesday. Electrodes attached to a

>patch, below right, stimulate the stroke patients's swallowing muscles. A

>control panel, below, monitors the amount of electricity going to the

>patient's

>throat.

>

>

>ASHEBORO - Electrical stimulation has been used in the medical field for

>centuries.

>

>Now, a new type of therapy using electrical stimulation is being employed

>at

>Randolph Hospital with remarkable results.

>

>Just ask Roy Rettinger of Asheboro.

>

>Rettinger, 76, suffered a stroke on Jan. 28 and now, after just three

>sessions with new VitalStem Therapy, he is swallowing foods and liquids

>safely.

>

> " I didn't have any trouble swallowing solids, but had problems with

>liquids, "

>Rettinger said.

>

>Randolph Hospital has been using VitalStem Therapy to treat dysphagia since

>March 3 and is the only hospital in Randolph, Guilford, Alamance, Chatham,

>son and Montgomery counties that can perform the treatment.

>

>Dysphagia occurs when there is a problem with any part of the swallowing

>process. People with dysphagia have difficulty swallowing and may also

>experience

>pain while swallowing. Some people may be completely unable to swallow or

>may

>have trouble swallowing liquids, foods or saliva. Eating then becomes a

>challenge.

>

>Other problems include not being able to start the swallowing reflex (a

>stimulus that allows food and liquids to move safely through the pharynx)

>because

>of a stroke or other nervous system disorder. People with those kinds of

>problems are unable to begin the muscle movements that allow food to move

>from the

>mouth to the stomach.

>

>Rettinger's swallowing problem occurred when he would retain fluid in his

>esophagus and it would sometimes go over into his airway, causing choking

>problems.

>

>The goal is to get patients swallowing foods and liquids safely so it will

>enter the stomach and bypass the lungs.

>

>When weak throat muscles cannot move all of the food toward the stomach,

>bits

>of food can fall or be pulled into the windpipe (trachea), which may also

>result in lung infection.

>

>Developed by Marcy Feed, a Speech-Language Pathologist in Cleveland, Ohio,

>VitalStem Therapy can make a difference for the 6-15 million adults and

>children

>in the United States who are known to have swallowing problems.

>

>Randolph Hospital's Speech-Language Pathologist, Koenig, M.Ed.,

>CCC-SLP

>is one of only 34 people in the world who is certified to do the treatment.

>

> " I read about the research that had been done by Feed and then took the

>exam

>to become certified to do the treatments, " Koenig said. " VitalStem has a 97

>percent success rate with patients who go through the therapy. "

>

>The treatments last for 5-6 consecutive days, for a total of 10 treatments.

>It is non-evasive and painless.

>

> " This treatment is great because there are no additional pills to add to my

>menu, " said Rettinger. " I would have trouble just swallowing a pill before.

>

> " I think this treatment is marvelous. It's is better than using those

>lemon-flavored swabs. "

>

>Before, the only therapy available used the swabs to initiate a gag reflex

>in

>the throat, which stimulated the throat muscles. Koenig said that it

>sometimes took 3-4 months before obtaining any noticeable results with that

>method.

>

> " With VitalStem Therapy, we are seeing results in days, " she said. " Roy

>just

>started last week and he is able to swallow great now. "

>

>The hospital started using VitalStem Therapy on March 3 and has had marked

>success with every patient treated.

>

>Each patient is referred to the program by their physician and will have a

>formal swallow evaluation either by radiation and/or fiber optic endoscopy

>and

>that includes inserting a fiber optic light/camera in the nose into the

>back of

>the throat and viewing the patient while they swallow various types of

>food.

>

> " We can tell what problem the patient may have by doing this, " said Koenig.

> " This will tell us how and where to place the probes to do the treatments.

>

> " We do each program to fit the needs of the patient. If they have trouble

>swallowing thin liquids like Roy, that is what we work on. If the patient

>has

>problems with thick liquids, then we focus on that.

>

> " The treatments are done one on one with each patient. "

>

>During treatment, small electrodes are placed externally on the neck. The

>patient will feel a crawling feeling (like a tickle, said Rettinger) and

>then a

>grabbing sensation.

>

>While the machine is on, Koenig will be giving the patient trials of

>foods/liquids to swallow, listening at the same time with a stethoscope for

>each

>swallow. The machine is timed to work for one hour, the duration of each

>treatment.

>

>

> " The machine is designed to be on for a certain amount of time and then

>off, "

>said Koenig. " This gives the muscles in the throat a break. "

>

>VitalStem Therapy actually retrains the brain to swallow involuntarily

>after

>10 treatments and is designed to be done for 5-6 consecutive days in a row.

>

> " Eating is such a social thing, " said Koenig. " Not being able to swallow

>really limits that. "

>

>Koenig said that the treatment is designed for patients with head injuries,

>stroke, Parkinson's disease, Multiple Sclerosis, ALS (Lou Gehrig's

>Disease),

>head and neck cancers and people that have been oxygen deprived.

>

> " Patients that get choked easily on liquids, solids or have been told that

>they can never eat again are responding to this therapy, " Koenig said. " The

>treatment has been done (in other areas) on a child as young as five days

>old to

>the oldest of patients that haven't been able to swallow in 10-20 years. "

>

>Koenig recommends that interested persons contact their physician and get

>an

>order for speech therapy (with the use of electrical stimulation for

>Dysphagia

>or swallowing difficulties).

>

>They can then schedule a swallow evaluation by calling the Rehabilitation

>Department at Randolph Hospital at 629-8835.

>

> " Before treatment, some patients struggle just to get saliva down, " Koenig

>said. " Now patients like Roy can drink the coffee he enjoys after just a

>few

>treatments. "

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I found this article interesting on that new therapy that Whitney will be

starting, hopefully this week, once we get insurance approval.

DeAnn, Mom to Austin 8, 5, CHARGEr Whitney 3 months

DeAnn,

Another amazing story with Vital Stem Therapy. I posted links and Marcy

Freed's email at the bottom of this story. Hope this will guide you and others

who

are interested in this therapy.

Judi Brinegar

With all the well-documented statistics that exist in pediatric medicine

today, there are no national statistics available indicating the number of

children who suffer from the inability to swallow. This condition is commonly

referred to as dysphagia or oral pharyngeal dysphagia. Children who suffer from

dysphagia are at risk for medical complications such as aspiration pneumonia,

bronchospasm, dehydration, malnutrition and asphyxia. Due to these increased

risks,

children with dysphagia often result in the placement of a percutaneous

enterostomal gastric (PEG) tube for feeding, and a percentage of patients

require

trachs.

There are various reasons why dysphagia appears in children. Dysphagia

correlates with specific disorders such as Charge syndrome, cerebral palsy,

hypotonia, prematurity, muscular dystrophy, mitochondrial disorders, chromosone

disorders, familial dysautonomia, heart disease, and prolonged intubation. These

are

just some of the widespread causes for oral pharyngeal dysphagia.

Conventional treatment for dysphagia in children often results in failure

because the children must follow very specific directions and commands in order

for the treatment to achieve any success. This coupled with the need for

prolonged intensive oral motor and speech therapy where progress is slow and

minimal

has often proved ineffective.

Most individuals take the simple act of swallowing for granted‹but, not Danny

Silver*, and, not Marcy Freed. The renowned Marcy Freed founded the E-stim

program with her intense persistence to pursue a twenty-year-old idea that has

now finally paid off. Last June the FDA approved the use of transcutaneous

external electrical stimulation for the treatment of swallow disorders in

children. The E-stim program met resistance from some doctors in its infancy,

but

today it has become widely recognized as an effective treatment for swallow

disorders.

After years of total nutrition via tube feeding, five-year-old Danny Silver,

affected with dysphagia among other birth defects, was introduced to the

E-Stim Clinic at University Hospital in Cleveland. Danny was one of 1,300

children

whose quality of life has been compromised by a swallow disorder, and whose

devoted parents turned to Marcy for help.

Upon Danny¹s arrival to Rainbow Children¹s Hospital, (the Pediatric

Department. of University Hospital of Cleveland), he and his parents were

greeted by

Dr. Holan, a developmental pediatrician who thoroughly evaluated Danny, and made

appropriate recommendations regarding his physical, medical and behavioral

issues. Then they were escorted to Rainbow Hospital where Marcy Freed welcomed

them and thoroughly assessed Danny¹s strength of swallow; timing of swallow; as

well as his strength of lip, tongue and facial muscles. She also attempted

some selected food to help her evaluate his swallow.

When this assessment was complete, Danny¹s parents sat down and watched a

video of Danny¹s modified barium swallow while Marcy patiently explained the

dynamics of their son¹s swallowing difficulties, and the reasoning behind it.

Danny¹s swallowing was delayed in timing, and his crycopharynx was not

functioning

properly. Marcy recommended dilatation of his crycropharynx (by an ENT

working with her) and an estimate of eight sessions of E-stim.

With Danny¹s parents in agreement, the process began. Marcy placed four small

electrodes on Danny¹s face and neck. These electrodes delivered electrical

stimulation to strengthen and retrain the muscles Danny uses for swallowing. The

intensity was set to Danny¹s tolerance level and then slowly increased in

order to elicit a swallow at a level that was comfortable for Danny. (Danny

later

expressed that the E-stim caused a tingling sensation in his throat, which he

got used to after the first few moments.) Each day for about one hour, he

received this therapy. At session number four, Danny¹s parents were

flabbergasted! Their son, who had not experienced the sensation of food in his

mouth for

four-and-a-half long years, had actually swallowed some applesauce! What a

simcha, what an absolute joy! Every day thereafter Danny¹s parents came to the

clinic laden with different foods comprised of a variety of textures and tastes

for Danny to swallow. From chicken soup to potato kugel to chocolate pudding,

the progress and excitement was unimaginable.

On day eleven Marcy felt confident that it was time for Danny to have a

modified barium swallow, which would determine, by fluoroscopy, if the treatment

was really effective, and if Danny¹s parents could safely feed their son by

mouth. With great trepidation, they sat Danny down on the Tumbleforms chair

prepared for him, and then watched as the radiologist mixed some barium into a

cup

of apple juice, a jar of pear sauce, and a chocolate leben. They then whispered

a prayer to Hashem and watched on the video as the leben went from the back

of his throatÅ  and then, Å gulpÅ  straight where it should, down the esophagus!

Wow, Danny¹s parent sighed with relief and smiled with joy. Danny then

attempted the apple juice, and the pear sauce, and Boruch Hashem, they witnessed

the

same positive results! Danny¹s family is just one of many that is thrilled to

report success with E-stim therapy.

For more information, contact the Bioelectrical Treatment Program for

Dysphagia at the University Hospital of Cleveland located at: 11100 Euclid Ave.,

Cleveland, Ohio 44106, or call them at: .

Resources on the therapy

Email for March Freed is mailto:Marcy.Freed@...

23.5.2000 [DYSPHAGIA] Marcy Freed/E-stim, Free Paper, Dec 1999 -=20

http://www.b9.com/dysphagia/200005/msg00170.html=20

19.5.2000 [DYSPHAGIA] E-stim & Marcy Freed/Deep Pharyngeal Neuromuscular =

Stimulation -

http://www.b9.com/dysphagia/200005/msg00131.html

18.5.2000 [DYSPHAGIA] e-stim - =20

http://www.b9.com/dysphagia/200005/msg00113.html

17.5.2000 [DYSPHAGIA] E-stim/Deep Pharyngeal Neuromuscular Stimulation -

http://www.b9.com/dysphagia/200005/msg00090.html

15.5.2000 [DYSPHAGIA] Marcy Freed - Electrical Stim for Swallowing - =

Update

http://www.b9.com/dysphagia/200005/msg00066.html

10.5.2000 [DYSPHAGIA] Shaker exercises

http://www.b9.com/dysphagia/200005/msg00039.html

9.5.2000 [DYSPHAGIA] adult tube feeders

http://www.b9.com/dysphagia/200005/msg00032.html=20

[Guest guest]

Hey Aisha,

I have just been told that I have neurosarcoidosis, I am 35 years old female married with 3 children and strangley enough my 5 year old daughter's name is Aishia. I have been to your web site to see what goes on and I must say that I am very impressed. I will take one day at a time and see how my life pans out from here. Because I am so new to this I think it might take a while for it all to sink in. I will talk to you soon.

God Bless

Carol

(no subject)

My name is Aisha too . What do you do for a living . I am only 11 years old . I hope your not mad since I'm e-mailing you while you must be so busy . Please reply to me , before december . Sicerly, Aisha Rehman

____________________________________________________ IncrediMail - Email has finally evolved - Click Here ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

AWWWWWWWWWWWW, How cute.... next you'll be signing books and autographs....

Dang....A real fan.. I'm impressed.....

Hugs,

[Guest guest]

YEA!!!! keep up the good work little one!!

the hallorans

(no subject)

> I just wanted to let everyone know how Whitney is doing with her Bottle

> feeding therapy with the Vitalstim. Previously she had taken two bottles,

2 cc's

> each time, and it all fell into her airways because of her weak swallow.

Today

> was her second session of Vitalstim and she was able to drink 10 cc's of

> formula mixed with rice cereal. We are so excited. It is hard to say if

it was

> the Vitalstim, or Whitney just figuring it out. The therapists seemed to

be

> thrilled. What ever the case, We all hope she continues at this rate.

>

> DeAnn, Mom to Austin 8, 5, Whitney CHARgEr 4 months old

> Southern California

>

>

>

[Guest guest]

Well I had to write before December LOL!

How you doing Ms S? Getting any sleep yet?

Love isha.

-- Re: Fw: (no subject)

That IS really cute and sweet...better hurry up and answer back. lol hugs S.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

That is so wonderful.

I hope you have written to her.

Sharon

(no subject)

My name is Aisha too . What do you do for a living . I am only 11 years old . I hope your not mad since I'm e-mailing you while you must be so busy . Please reply to me , before december . Sicerly, Aisha Rehman

____________________________________________________ IncrediMail - Email has finally evolved - Click Here ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

> I would appreciate advise re mercury poisoning versus lyme -

particularly

> from Andy if you read this post.

>

> If a patient shows some improvement (not continuous, unfortunately)

> following amalgam removal and chelation (formerly DMSA and now ALA

only)

> is

> this confirmation enough of a definite mercury poisoning diagnoses.

--- Getting rid of the mercury is important whether on not you have

Lyme Disease. If you are getting positive results regardless of

other potential problems I would continue JMO.

>

> I am wondering if my CFS/ME symptoms could be lyme and after

researching

> this I am even more confused as there is so much of an overlap of

> symptoms.

--- There is a large overlap of symptoms for a lot of problems and it

is difficult at times. All you can do is test where possible and try

treatment protocols to try to determine what is happening.

I don't recall being bitten by a tick and certainly have not

> had

> a rash

--- Only a certain percentage of people bitten ever develope a rash,

for more information on Lyme from people currently treating it try

here - http://health.groups.yahoo.com/group/Lyme-and-rife/

both groups owner has and is treating for both Mercury and

Lyme.

TK

but many other symptoms seem to be an overlap of mercury

> poisoning.

>

> (UK)

> --