New Here

[Guest guest]

is your son in the FAB brace to hold on to the correction he had before?

Or is he just out of casts and you stretch him every day? This is not making

sense to me. The heel cord should not be lengthened after he's been out of

casts for a while, that should have been part of the casting process.

s.

New here

I just stumpled across this group and was so glad to have found it. My

little boy was born June 19, 2005 with a club foot on the left and

Metatarsus Adductus on the right. He was in weekly cast for his first

month and up until now the doctor has had us manipulate his foot each

time we change his diaper rather than put him in casts. Two weeks ago

he was back in a cast for a week because the doctor felt it was getting

tighter. I have never read anywhere of the parents doing the

manipulation...has anyone here done it? We just found out that he will

need surgery to cut the heel cord, November 14. Has anyone had

experience with that? I really have no idea what to expect.

Thanks for any information,

[Guest guest]

Thanks. It really helps to hear from others. My son, , is two

months older than your daughter and we are just now having the

surgery. The doctor was waiting until he got big enough because he

was so tiny. I really like our doctor and it does seem like what he

is doing is on par with what I have read about the Ponseti method.

what does FAB stand for? Thanks for the information!

, 06/19/05 LCF

> >

> > I just stumpled across this group and was so glad to have found

> it. My

> > little boy was born June 19, 2005 with a club foot on the left

and

> > Metatarsus Adductus on the right. He was in weekly cast for his

> first

> > month and up until now the doctor has had us manipulate his foot

> each

> > time we change his diaper rather than put him in casts. Two weeks

> ago

> > he was back in a cast for a week because the doctor felt it was

> getting

> > tighter. I have never read anywhere of the parents doing the

> > manipulation...has anyone here done it? We just found out that he

> will

> > need surgery to cut the heel cord, November 14. Has anyone had

> > experience with that? I really have no idea what to expect.

> >

> > Thanks for any information,

> >

> >

>

[Guest guest]

Thanks. It really helps to hear from others. My son, , is two

months older than your daughter and we are just now having the

surgery. The doctor was waiting until he got big enough because he

was so tiny. I really like our doctor and it does seem like what he

is doing is on par with what I have read about the Ponseti method.

what does FAB stand for? Thanks for the information!

, 06/19/05 LCF

> >

> > I just stumpled across this group and was so glad to have found

> it. My

> > little boy was born June 19, 2005 with a club foot on the left

and

> > Metatarsus Adductus on the right. He was in weekly cast for his

> first

> > month and up until now the doctor has had us manipulate his foot

> each

> > time we change his diaper rather than put him in casts. Two weeks

> ago

> > he was back in a cast for a week because the doctor felt it was

> getting

> > tighter. I have never read anywhere of the parents doing the

> > manipulation...has anyone here done it? We just found out that he

> will

> > need surgery to cut the heel cord, November 14. Has anyone had

> > experience with that? I really have no idea what to expect.

> >

> > Thanks for any information,

> >

> >

>

[Guest guest]

-No, he isn't in anything while we are waiting surgery. We have been,

and still are, doing stretching ourselves at home. This is what

concerns me...that we loosing any progress we made with the casts

while waiting for the surgery. I will be calling his orthopedic

surgeon Monday with lots of questions. I emailed Dr. Herzenberg and

got a quick response. He is very close to us and will see

either of the next two Fridays to give us another opinion.

In nosurgery4clubfoot , " number23 " <number23@c...>

wrote:

>

> is your son in the FAB brace to hold on to the correction he

had before? Or is he just out of casts and you stretch him every

day? This is not making sense to me. The heel cord should not be

lengthened after he's been out of casts for a while, that should have

been part of the casting process.

> s.

>

> New here

>

>

> I just stumpled across this group and was so glad to have found it.

My

> little boy was born June 19, 2005 with a club foot on the left and

> Metatarsus Adductus on the right. He was in weekly cast for his

first

> month and up until now the doctor has had us manipulate his foot

each

> time we change his diaper rather than put him in casts. Two weeks

ago

> he was back in a cast for a week because the doctor felt it was

getting

> tighter. I have never read anywhere of the parents doing the

> manipulation...has anyone here done it? We just found out that he

will

> need surgery to cut the heel cord, November 14. Has anyone had

> experience with that? I really have no idea what to expect.

>

> Thanks for any information,

>

>

>

>

>

>

>

>

>

[Guest guest]

-No, he isn't in anything while we are waiting surgery. We have been,

and still are, doing stretching ourselves at home. This is what

concerns me...that we loosing any progress we made with the casts

while waiting for the surgery. I will be calling his orthopedic

surgeon Monday with lots of questions. I emailed Dr. Herzenberg and

got a quick response. He is very close to us and will see

either of the next two Fridays to give us another opinion.

In nosurgery4clubfoot , " number23 " <number23@c...>

wrote:

>

> is your son in the FAB brace to hold on to the correction he

had before? Or is he just out of casts and you stretch him every

day? This is not making sense to me. The heel cord should not be

lengthened after he's been out of casts for a while, that should have

been part of the casting process.

> s.

>

> New here

>

>

> I just stumpled across this group and was so glad to have found it.

My

> little boy was born June 19, 2005 with a club foot on the left and

> Metatarsus Adductus on the right. He was in weekly cast for his

first

> month and up until now the doctor has had us manipulate his foot

each

> time we change his diaper rather than put him in casts. Two weeks

ago

> he was back in a cast for a week because the doctor felt it was

getting

> tighter. I have never read anywhere of the parents doing the

> manipulation...has anyone here done it? We just found out that he

will

> need surgery to cut the heel cord, November 14. Has anyone had

> experience with that? I really have no idea what to expect.

>

> Thanks for any information,

>

>

>

>

>

>

>

>

>

[Guest guest]

:

I have never heard of parents do the manipulation. Just particular excerises.

I agree, you need to find a certified Ponseti Dr. The heel cord release is a

minor procedure. Probably harder on the parents than our little ones. I know it

was for me. I am happy to talk to you more about it. Please feel free to email

me directly: amakared@...

Mom to 6-11-05 BL CF P/M 22/7

christee dawson wrote:

You need to see a Ponseti certified Dr!

artlovr wrote:I just stumpled across this group and was so

glad to have found it. My

little boy was born June 19, 2005 with a club foot on the left and

Metatarsus Adductus on the right. He was in weekly cast for his first

month and up until now the doctor has had us manipulate his foot each

time we change his diaper rather than put him in casts. Two weeks ago

he was back in a cast for a week because the doctor felt it was getting

tighter. I have never read anywhere of the parents doing the

manipulation...has anyone here done it? We just found out that he will

need surgery to cut the heel cord, November 14. Has anyone had

experience with that? I really have no idea what to expect.

Thanks for any information,

[Guest guest]

:

I have never heard of parents do the manipulation. Just particular excerises.

I agree, you need to find a certified Ponseti Dr. The heel cord release is a

minor procedure. Probably harder on the parents than our little ones. I know it

was for me. I am happy to talk to you more about it. Please feel free to email

me directly: amakared@...

Mom to 6-11-05 BL CF P/M 22/7

christee dawson wrote:

You need to see a Ponseti certified Dr!

artlovr wrote:I just stumpled across this group and was so

glad to have found it. My

little boy was born June 19, 2005 with a club foot on the left and

Metatarsus Adductus on the right. He was in weekly cast for his first

month and up until now the doctor has had us manipulate his foot each

time we change his diaper rather than put him in casts. Two weeks ago

he was back in a cast for a week because the doctor felt it was getting

tighter. I have never read anywhere of the parents doing the

manipulation...has anyone here done it? We just found out that he will

need surgery to cut the heel cord, November 14. Has anyone had

experience with that? I really have no idea what to expect.

Thanks for any information,

[Guest guest]

-

I am still learning too! I got a little confused with all of the

acronyms! My daughter is in the shoes or AFO. She is

doing extremely well in them and the orthotist has told me that they

cause little irritations or blisters, which I was happy to hear. As

for the tenotomy, I am sure it will all go well, good luck and keep

us posted!

, 10/16/02, Kolby 8/15/05 RCF

>

> FAB stands for Foot Abduction Brace, it's also commonly known as a

Dennis Brown Bar (DBB). The new variety is becoming

known as an AFO although that is confusing because there's another

type of brace known as an AFO that is not good for club foot.

> s.

> what does FAB stand for? Thanks for the information!

> , 06/19/05 LCF

>

> ---

>

>

>

[Guest guest]

-

I am still learning too! I got a little confused with all of the

acronyms! My daughter is in the shoes or AFO. She is

doing extremely well in them and the orthotist has told me that they

cause little irritations or blisters, which I was happy to hear. As

for the tenotomy, I am sure it will all go well, good luck and keep

us posted!

, 10/16/02, Kolby 8/15/05 RCF

>

> FAB stands for Foot Abduction Brace, it's also commonly known as a

Dennis Brown Bar (DBB). The new variety is becoming

known as an AFO although that is confusing because there's another

type of brace known as an AFO that is not good for club foot.

> s.

> what does FAB stand for? Thanks for the information!

> , 06/19/05 LCF

>

> ---

>

>

>

[Guest guest]

I'm happy to hear you're seeking a 2nd opinion. You are right to be concerned

and I look very forward to hearing what you learn at your next appointment! Good

for you!!! Try to go as soon as possible because your baby is losing ground the

longer you wait.

s.

New here

>

>

> I just stumpled across this group and was so glad to have found it.

My

> little boy was born June 19, 2005 with a club foot on the left and

> Metatarsus Adductus on the right. He was in weekly cast for his

first

> month and up until now the doctor has had us manipulate his foot

each

> time we change his diaper rather than put him in casts. Two weeks

ago

> he was back in a cast for a week because the doctor felt it was

getting

> tighter. I have never read anywhere of the parents doing the

> manipulation...has anyone here done it? We just found out that he

will

> need surgery to cut the heel cord, November 14. Has anyone had

> experience with that? I really have no idea what to expect.

>

> Thanks for any information,

>

>

>

>

>

>

>

>

>

[Guest guest]

I'm happy to hear you're seeking a 2nd opinion. You are right to be concerned

and I look very forward to hearing what you learn at your next appointment! Good

for you!!! Try to go as soon as possible because your baby is losing ground the

longer you wait.

s.

New here

>

>

> I just stumpled across this group and was so glad to have found it.

My

> little boy was born June 19, 2005 with a club foot on the left and

> Metatarsus Adductus on the right. He was in weekly cast for his

first

> month and up until now the doctor has had us manipulate his foot

each

> time we change his diaper rather than put him in casts. Two weeks

ago

> he was back in a cast for a week because the doctor felt it was

getting

> tighter. I have never read anywhere of the parents doing the

> manipulation...has anyone here done it? We just found out that he

will

> need surgery to cut the heel cord, November 14. Has anyone had

> experience with that? I really have no idea what to expect.

>

> Thanks for any information,

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi,

I am new to sarcoidosis. A couple of months ago I started having

trouble swallowing. I went to the ER and they told me I probably

have a yeast infection. They said some of the lymph nodes in my

lungs were a little swollen on the x ray and to meet with my doctor

in a couple of months to have it checked. They also set me up with

a gastroenterologist to have a scope done.

Having the scope done sounded a little crazy to me so I set up and

appt with my Family Practitioner. He said he thought my thyroid was

swollen and sent me to have a sonogram. Well the person doing my

sonogram found a lymph node around an inch in diameter so they set

up a CT scan and found more. The next day another CT scan to check

my abdomen and groin. No swollen lymph nodes there. So they told

me I probably have Lymphoma and set up a biopsy. The biopsy came

back as Sarcoidosis.

I now have an appointment with a pulmonary specialist next thursday.

Needless to say I have been on an emotional roller coaster and my

family is close to killing me.

I hate feeling clingy like this. I don't want my husband to go to

work and I call him way to much just to hear his reassuring voice.

I'm very worried about what this could do to me.

Some of the symptoms I've noticed. Pressure in my chest and neck.

A slight cough (but I just quit smoking a couple of months ago when

this started, so that could be that) Feeling hot and tired.

Extreme weight loss. 25+ lbs in a month. Sometimes I feel like I

can't hold the baby or walk up the stairs.

What I am wondering is how much this is going to change my life. Can

you die from it. If not, how normal can my life be, and is it true

that it could just go away.

One other thing I've noticed is that my ankles have hurt a lot ever

since I had my 18 month old baby.

Also, What do do about this emotional roller coaster. All I can

think about is dying and leaving my kids without a mother, my

husband without a wife.

Thanks for any help you can give me.

Tami

[Guest guest]

Tami, you have found the right place. We have over 400 members worldwide and most of us have been where you are right now. The most important thing you need is a doctor or team of doctors who are well-educated about sarcoidosis. It's true that a high percentage of people with sarc never develop symptoms. But you already have symptoms, so it's not going to go away without treatment. I'm not clear on whether you had a chest x-ray or chest CT, but you need those & a PFT (pulmonary function test), ideally before you see the pulmonologist. Perhaps your family doc can order them. You also need some bloodwork to check for inflammation & establish a baseline. With the fatigue & weight loss, as well as problems with temperature regulation, it sounds like you have systemic sarcoidosis. This is more than likely going to require some type of immune suppressants. Most docs will start with Prednisone, which can work well but has significant side effects, so it's not a good long-term solution. Once the sarc is under control, you'll need to taper off the Pred (or at least down to a low maintenance dose) & add one or more other drugs.

Where are you located? We might be able to advise you on doctors who are up-to-date on research & treatment options for sarc. As far as being fatal, that's unlikely. Severe lung disease, cardiac sarc & severe brain involvement are more likely to lead to death. Sarc is a chronic disease that can usually be managed with proper medical care. You may go into a remission, yet still have residual damage to cope with.

At the bottom of this message & group messages are some links. If you go to the Links section you will find many resources. Also there is a ton of info in the Archives.

I am glad that you found us, although it's a shame that you have sarc. Feel free to ask any questions, vent, complain, whine, rage, etc. Sometimes you don't feel like you can express all your fears, anger, frustration, etc., with your family. That's why we are here. Just remember that we are also sick, so it might take a couple of days to get responses to your posts.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: New HereDate: Fri, 08 Jun 2007 01:20:45 -0000

Hi,I am new to sarcoidosis. A couple of months ago I started having trouble swallowing. I went to the ER and they told me I probably have a yeast infection. They said some of the lymph nodes in my lungs were a little swollen on the x ray and to meet with my doctor in a couple of months to have it checked. They also set me up with a gastroenterologist to have a scope done. Having the scope done sounded a little crazy to me so I set up and appt with my Family Practitioner. He said he thought my thyroid was swollen and sent me to have a sonogram. Well the person doing my sonogram found a lymph node around an inch in diameter so they set up a CT scan and found more. The next day another CT scan to check my abdomen and groin. No swollen lymph nodes there. So they told me I probably have Lymphoma and set up a biopsy. The biopsy came back as Sarcoidosis.I now have an appointment with a pulmonary specialist next thursday.Needless to say I have been on an emotional roller coaster and my family is close to killing me.I hate feeling clingy like this. I don't want my husband to go to work and I call him way to much just to hear his reassuring voice.I'm very worried about what this could do to me.Some of the symptoms I've noticed. Pressure in my chest and neck. A slight cough (but I just quit smoking a couple of months ago when this started, so that could be that) Feeling hot and tired. Extreme weight loss. 25+ lbs in a month. Sometimes I feel like I can't hold the baby or walk up the stairs.What I am wondering is how much this is going to change my life. Can you die from it. If not, how normal can my life be, and is it true that it could just go away.One other thing I've noticed is that my ankles have hurt a lot ever since I had my 18 month old baby.Also, What do do about this emotional roller coaster. All I can think about is dying and leaving my kids without a mother, my husband without a wife.Thanks for any help you can give me.Tami

Picture this – share your photos and you could win big!

[Guest guest]

Tami,

You have classic pulmonary sarcoidosis. This means that the lymphs in your lungs and body are not functioning as they should.

I have lived with sarc for the last 17 yrs now-- and many of our members have had it for as long as 30 yrs. So it probably won't kill you.

What sarc does is change the structure of your organs so that they don't work as well as they should. If you think of your lungs as a sponge-- a new, sponge-- then you have an idea of what they should look like. For those of us with sarc- our lungs look like the kitchen sponge that needs to be tossed. (This is very late stages-- yours probably aren't this advanced.)

Your pulmonologist will want to put you on prednisone. Then they will wean you off over a 12-18 mo period. Pred is excellant to get the inflammation down quickly, but it does give you that wonderful weight gain, and moon face. Some people handle it well-- most of us have multiple system sarcoidosis, the sarc induced arthrititis, (which is what your ankles are yelling about) and we have neurological symptoms also. Dementia, etc.

First off- don't go off into the "this will kill me mode." This disease is a long slow process, and for many, you can function well for a very long time.

It sounds like they've caught yours early, and with proper treatment, steriods, anti-inflamatories, diet and exercise changes-- get rid of the dairy, the sweets, the sodas and caffeine, you will be able to love those kids and hubby for years to come.

When your body says rest-- rest. Pacing yourself from the stress and fatigue of sarc is so very important. So listening to your body is one of biggest things.

One of the best sites to learn about sarc is FSR--FOUNDATION FOR SARCOIDOSIS RESEARCH. WWW.STOPSARCOIDOSIS.ORG.

iT IS Founded by one of the top pulmonologists in sarcoidosis. I highly recommend checking it out. We too are a group of people that have years of experience in educating ourself about this disease-- so don't worry about asking to many questions-- we are glad to help when we can.

take care, and welcome to the family,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Deborah,

You've found around 500 people that have NS. We are all on the same path together.

There are probably 20 or 30 people that post regularly-- so you will have plenty of friends to talk to -- in fact- we become family--- which is a good thing...

We have 4 moderators, and Darlene and I co-own the group-- and even if a day goes by when one of us can't get online-- we will answer your posts. So don't despair. Sometimes we are all sick at the same time (now) and so we''re a bit slower than usual.

Share your story with us, and we'll all give you ours. Many of us have had sarcoidosis for many years-- myself, I started out with it 17 yrs ago- and have it fully systemic. Joints, muscles, ligaments, spine, brain, heart and lungs as well as my eyes. I'm on Remicade, Methotrexate, and Plaquenil just for the sarc. It is keeping the sarc induced arthritis issues at bay, and my lungs are in better shape than they were. Most days, my mind is pretty good. So I'll take it!

Anyhow, we're glad you found us-- and again- welcome to the family,

Tracie

NS Co-owner/moderatorStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Deborah,

You've found around 500 people that have NS. We are all on the same path together.

There are probably 20 or 30 people that post regularly-- so you will have plenty of friends to talk to -- in fact- we become family--- which is a good thing...

We have 4 moderators, and Darlene and I co-own the group-- and even if a day goes by when one of us can't get online-- we will answer your posts. So don't despair. Sometimes we are all sick at the same time (now) and so we''re a bit slower than usual.

Share your story with us, and we'll all give you ours. Many of us have had sarcoidosis for many years-- myself, I started out with it 17 yrs ago- and have it fully systemic. Joints, muscles, ligaments, spine, brain, heart and lungs as well as my eyes. I'm on Remicade, Methotrexate, and Plaquenil just for the sarc. It is keeping the sarc induced arthritis issues at bay, and my lungs are in better shape than they were. Most days, my mind is pretty good. So I'll take it!

Anyhow, we're glad you found us-- and again- welcome to the family,

Tracie

NS Co-owner/moderatorStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Hi

Deborah,  you’ve come to the right place, many of here have NS, and are

dealing with it and other problems as well, we welcome you to this group, we

are a family of NeuroSarcoid’s J, it’s a warm friendly place to be, feel free to ask questions or

just plain talk.  I hope you feel welcomed here,  Marla  

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of deborah_turnage

Sent: Friday, January 04, 2008

8:42 PM

To: Neurosarcoidosis

Subject: New

Here

Hi to all:

I am 53, and live with my wonderful poodle Sadie. She's just a plain

one no fu-fu stuff for her. She's my best friend right now. I

really don't have any family around so sometimes she's the only one I

have to talk to. I joind one other Sarcoid group but it is huge and

you never seem to get back to anyone you correspond with and it gets

frustrating at time. So when I saw this site I thought I would try

it out.

I have a ton of other health issues and take a ton of meds but it is

the Sarcoidosis that is the problem now. I was diagnosed with

Neurosarcoidosis two years ago and I was wondering if anyone here has

it and knows anything about it? Hopefully next week I will be

starting treatment, it will be my second appointment with the

Rheumy. Due to moving and changing doctors it has all been up in the

air and I am feeling worse and worse as the days go on.

Hope to be in touch with you all.

Thanks,

Deborah KY (from Kentucky)