Hello

[Guest guest]

Stacey,

Hey and welcome to the group! So glad you finally found us. ) You

will enjoy this group so much as everyone is very helpful. It is so

strange that you are posting tongight though because I was just

studying that MAGIC picture tonight and noticed the little boy

sitting on the fence. And, it happens to be Ethan. That is so

strange.

Anyway, I have a 3 year old son, . He is not in the picture,

but I do have some posted in the photos section. We will be at the

convention this year too, so maybe we can try to find each other.

Our boys may like to play! )

Welcome once again,

Jodi R.

> Hello all-

>

> My name is Stacey. I'm mom to Ethan (RSS, 2 1/4 yrs. old, 18#10

oz., 31 " )

> and Aidan (non-RSS, 4 1/2 months). This is my first post to the

group. I

> signed up for what I thought was the RSS list last year when we

joined

> MAGIC. It turned out I was on the general MAGIC list--no wonder

the postings

> didn't seem particularly applicable to our situation. A couple

weeks ago I

> finally got around to getting on the right list (one of those To Do

items that kept

> getting put off), and now the postings are much more applicable!

>

> We are looking forward to the convention this year. We attended

last year

> (that's Ethan in the upper left hand corner of the group pic-I'm

holding him on

> the chain link fence) and found it to be very helpful. I hope to

meet more

> people this year, however--last year we were not as outgoing as we

should

> have been!

>

> Stacey

[Guest guest]

hi stacey!!

welcome to the group!! we were at convention last year too!!

christopher is in the first row 3rd from the railing on the left

(little blonde haired boy with white magic shirt on)!! we will be

there again this year as well!! hope to talk to you there!!

jodie c

>

> > Hello all-

> >

> > My name is Stacey. I'm mom to Ethan (RSS, 2 1/4 yrs. old, 18#10

> oz., 31 " )

> > and Aidan (non-RSS, 4 1/2 months). This is my first post to the

> group. I

> > signed up for what I thought was the RSS list last year when we

> joined

> > MAGIC. It turned out I was on the general MAGIC list--no wonder

> the postings

> > didn't seem particularly applicable to our situation. A couple

> weeks ago I

> > finally got around to getting on the right list (one of those To

Do

> items that kept

> > getting put off), and now the postings are much more applicable!

> >

> > We are looking forward to the convention this year. We attended

> last year

> > (that's Ethan in the upper left hand corner of the group pic-I'm

> holding him on

> > the chain link fence) and found it to be very helpful. I hope

to

> meet more

> > people this year, however--last year we were not as outgoing as

we

> should

> > have been!

> >

> > Stacey

[Guest guest]

Hi ,

Here is the link

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/46891

Just copy and paste this in the body of an email and send it to her so

she can join....this group is such a great resource!!

So how are you? Have you had a chance to set up an appt with Dr. Dobbs

yet? Hope your little guy just ends up needing the ATTT. At least with

Dr. Dobbs you know that he will take the least invasive approach. There

are quite a few parents here who have had been through the ATTT etc,

glad you're here....we are here for you if you need us!!

Smiles,

& Grace

>

> Hello! I used to be active on this group. My son has a clubfoot and

> is almost 4. He also is missing his peronal nerve on that side.. so

> it has been a long story. Anywhoo, his PT asked me to talk to a mom

> who has a 2 yr old with CF. This mom is having trouble with her docs

> and her son is not getting better. How can she join this group? It

> has been so long I forget.

>

> Thanks!

>

>

>

[Guest guest]

Hi, Dirk!

Welcome to the group!

Do you mind sharing who your daughter's doctor is and how old she

is? (what's her treatment history?) Did you contact the doctor

about the sores?

If she has pressure sores, it's probably best to have the doctor put

her in healing casts to hold the correction while the sores heal.

This way her feet won't regress....so it won't be a set-back, just a

short delay in getting into the brace. Leaving her feet unbraced

leaves them open to relapse and then you'll have to have more

casting to get them back to where they need to be.

Were you able to verify that her brace was set up correctly (correct

distance between the shoes and correct abduction angle/outward

rotation of the shoes)?

Lots of people have had zero issues with the Markells, lots of

people have success stories in avoiding problems moving from the

Markells to the P/M brace as well. The first thing to determine,

though, is if the feet are fully corrected, the shoes are on snugly

and the brace is set up properly. Hopefully we can help you help

your little girl to have zero issues!

Glad you found us!

& (3-16-00, lcf)

>

> hi all,

>

> just found this group as i was doing research for alternative

> treatments to the Dennis Brown Brace. My wife and made the

decision

> after seeing the tips and tricks document to take Sopie's shoes

off

> yesterday till her blisters heal, the picturein the problems area

> could be her feet. She has had her shoes off for 1.5 days and

after

> only have them on for about 2 weeks after tenotomy.

>

> We feel like this is a huge setback, but could not bear to put the

> shoes back on and hear her scream because of the tenderness in her

> heals. We are planning on trying the ponsetti mitchell shoes and

> hope that will provide more comfort.

>

> Does anyone have a similar story they can share results either

> postive or negative when moving from the DB to the mitchells?

>

> thanks,

>

> dirk

>

[Guest guest]

Hi Dirk,

glad to have you on board. It can get a little confusing talking about the

brace with all it's various names and nick names. I don't mean to sound like a

know it all but I thought I could help if I clarified a couple things to help

you discuss things better.

The DBB stands for Dennis Brown Bar, named after a Dr. Brown.

The initials FAB stand for Foot Abduction Brace.

The DBB is a Foot Abduction Brace.

The shoes are also a Foot Abduction Brace.

And what I assume you have is the Markell, which are also a FAB.

The Markell shoes are the white open toe shoes, the shoes are the

sandel looking shoe - but both are FAB's (shoes on the bar).

I've used the FAB for 2 1/2 years on one child and about a week or ten

days on my other child so far. They work wonderfully. There are rare minor

issues with them but all in all they are miles ahead of the other varieties of

FAB's in comfort and long term results.

It can take 2 to 3 weeks to get a pair of s, so you might want to

discuss with yoru doctor having yoru daughter re-casted to hold her correction

and let her heal recover as you wait for the shoes to arrive.

I hope things get better for your family!

shawnee and her soggy bottom boys

hello

hi all,

just found this group as i was doing research for alternative

treatments to the Dennis Brown Brace. My wife and made the decision

after seeing the tips and tricks document to take Sopie's shoes off

yesterday till her blisters heal, the picturein the problems area

could be her feet. She has had her shoes off for 1.5 days and after

only have them on for about 2 weeks after tenotomy.

We feel like this is a huge setback, but could not bear to put the

shoes back on and hear her scream because of the tenderness in her

heals. We are planning on trying the ponsetti mitchell shoes and

hope that will provide more comfort.

Does anyone have a similar story they can share results either

postive or negative when moving from the DB to the mitchells?

thanks,

dirk

[Guest guest]

Hi Dirk and welcome!

My daughter was in the Markell shoes for less than 24 hours and developed

a terrible pressure sore. We ordered the shoes and had her recasted to

hold the corrected until we received them. We have had only minor issues with

red spots with the s which are easily taken care of with a bit of

padding. My daughter's feet are complex because her toes are curved inward and

that is what caused the sore. I am so glad for the shoes because they

are so much easier for me to put on than the Markells and do not hurt . I

hope you have a similar experience with your daughter.

Carol and , bcf, 10-27-05, 18/7 s

hello

hi all,

just found this group as i was doing research for alternative

treatments to the Dennis Brown Brace. My wife and made the decision

after seeing the tips and tricks document to take Sopie's shoes off

yesterday till her blisters heal, the picturein the problems area

could be her feet. She has had her shoes off for 1.5 days and after

only have them on for about 2 weeks after tenotomy.

We feel like this is a huge setback, but could not bear to put the

shoes back on and hear her scream because of the tenderness in her

heals. We are planning on trying the ponsetti mitchell shoes and

hope that will provide more comfort.

Does anyone have a similar story they can share results either

postive or negative when moving from the DB to the mitchells?

thanks,

dirk

[Guest guest]

Dirk,

Hello and Welcome! My husband's name is Dirk BTW!

The sore you are describing is exactly what prompted the Tips

document in the first place. My daughter had this kind of sore and

the solutions within that document are the direct result of our

experience. So you are absolutely not alone!

I would not suggest leaving her out of the shoes too long. At this

point in your treatment, even a few hours could promote a relapse. I

do very much suggest that you follow the information about cutting

the heels out (make a hole) because this will allow the sore to heal

and also keep her in the shoes to maintain correction. I strongly

urge you to get yourself a nice sharp knife and just chop the

shoe. It will not harm the integrity of the shoe in any way, the

holed shoe you see in the document is the shoe that Darbi wore for

months and it's still as hardy today as it was when they had no

hole. It was the best thing we could have ever done for her and it

also was the one thing that clued me in to the fact that I was not

putting them on right that whole time. So just do it! lol

I do like the Ponseti/ shoes and they are absolutely an

option for you but for the most part, the Markells are a fine shoe

that works for most children. It is rarely the shoe itself that

causes these problems but most often user error (that's me!) or an

uncorrected foot. Both of which can be remedied and then back into

the shoes without problems. But not with a sore... you have to get

any and all pressure off that sore to let it heal. If you are unsure

of where to cut, here's a way to know. First, open the shoe all the

way and remove the tongue and laces (or make it very loose. Place a

bandaid over the sore and use a water based marker (like Crayola) and

make a nice wet inky spot directly on top of the sore area on top of

the bandaid. Then, using the instructions within the tips document

for applying them, put her foot deeply and securely into the shoe

with the heel pressed deep into the back/bottom and then press. The

mark should transfer to the inside of the shoe. Now you know where

her sore will be when you get them on properly and you can remove that area.

If you have any questions, please email the list or you can always

email me directly at frogabog @ qwest dot net.

Hang in there, it WILL get better. You are in the exact right place

to get through this, many of us have been exactly where you are with

our clubfoot child and there is a light at the end of the tunnel. Promise!

Kori

Darbi's Mama

At 07:16 AM 5/1/2006, you wrote:

>hi all,

>

>just found this group as i was doing research for alternative

>treatments to the Dennis Brown Brace. My wife and made the decision

>after seeing the tips and tricks document to take Sopie's shoes off

>yesterday till her blisters heal, the picturein the problems area

>could be her feet. She has had her shoes off for 1.5 days and after

>only have them on for about 2 weeks after tenotomy.

>

>We feel like this is a huge setback, but could not bear to put the

>shoes back on and hear her scream because of the tenderness in her

>heals. We are planning on trying the ponsetti mitchell shoes and

>hope that will provide more comfort.

>

>Does anyone have a similar story they can share results either

>postive or negative when moving from the DB to the mitchells?

>

>thanks,

>

>dirk

>

>

>

>

>

>

>

>

[Guest guest]

Kori knows about shoes. Do what ever she says. My blurb is.. To heal

the blisters, I recommend Lanisoh lanolin cream, especially if they are

still fluid filled blisters. That and a nice slick bandaid. The

lanolin just seems to melt them away. In my opinion, there is nothing

better to get rid of blisters than the lanolin---- seems like we tried

everything.

Good luck, it does get better. Soon the shoes will just be one of those

things that you do without thinking.

Mom to Tenny rt. cf. FAB 14/7

Re: hello

Dirk,

Hello and Welcome! My husband's name is Dirk BTW!

The sore you are describing is exactly what prompted the Tips

document in the first place. My daughter had this kind of sore and

the solutions within that document are the direct result of our

experience. So you are absolutely not alone!

I would not suggest leaving her out of the shoes too long. At this

point in your treatment, even a few hours could promote a relapse. I

do very much suggest that you follow the information about cutting

the heels out (make a hole) because this will allow the sore to heal

and also keep her in the shoes to maintain correction. I strongly

urge you to get yourself a nice sharp knife and just chop the

shoe. It will not harm the integrity of the shoe in any way, the

holed shoe you see in the document is the shoe that Darbi wore for

months and it's still as hardy today as it was when they had no

hole. It was the best thing we could have ever done for her and it

also was the one thing that clued me in to the fact that I was not

putting them on right that whole time. So just do it! lol

I do like the Ponseti/ shoes and they are absolutely an

option for you but for the most part, the Markells are a fine shoe

that works for most children. It is rarely the shoe itself that

causes these problems but most often user error (that's me!) or an

uncorrected foot. Both of which can be remedied and then back into

the shoes without problems. But not with a sore... you have to get

any and all pressure off that sore to let it heal. If you are unsure

of where to cut, here's a way to know. First, open the shoe all the

way and remove the tongue and laces (or make it very loose. Place a

bandaid over the sore and use a water based marker (like Crayola) and

make a nice wet inky spot directly on top of the sore area on top of

the bandaid. Then, using the instructions within the tips document

for applying them, put her foot deeply and securely into the shoe

with the heel pressed deep into the back/bottom and then press. The

mark should transfer to the inside of the shoe. Now you know where

her sore will be when you get them on properly and you can remove that

area.

If you have any questions, please email the list or you can always

email me directly at frogabog @ qwest dot net.

Hang in there, it WILL get better. You are in the exact right place

to get through this, many of us have been exactly where you are with

our clubfoot child and there is a light at the end of the tunnel.

Promise!

Kori

Darbi's Mama

At 07:16 AM 5/1/2006, you wrote:

>hi all,

>

>just found this group as i was doing research for alternative

>treatments to the Dennis Brown Brace. My wife and made the decision

>after seeing the tips and tricks document to take Sopie's shoes off

>yesterday till her blisters heal, the picturein the problems area

>could be her feet. She has had her shoes off for 1.5 days and after

>only have them on for about 2 weeks after tenotomy.

>

>We feel like this is a huge setback, but could not bear to put the

>shoes back on and hear her scream because of the tenderness in her

>heals. We are planning on trying the ponsetti mitchell shoes and

>hope that will provide more comfort.

>

>Does anyone have a similar story they can share results either

>postive or negative when moving from the DB to the mitchells?

>

>thanks,

>

>dirk

>

>

>

>

>

>

>

>

[Guest guest]

Hi everyone,

I am trying this diet since I have a lot of digestive problems. I have IBS and

was just diagnosed with Mastocytic enterocolitis. I have too many mast cells in

my intestines which cause me to have anaphylactic reactions to certain

foods(like dairy,eggs,yeast). This is different from IgE mediated allergy.

I have been eating a Paleo diet but still have a lot of gas,bloating and pain

with starchy veggies like yams and parsnips. I am also 8 pounds at least

underweight. My chiroractor suggested I eat this way.

I have a main gene for celiac disease, I was on tons of antibiotics through my

life and picked up some bad bugs when I was in India 20 years ago.

I have very bad reactions to eggs, but I am hoping that in a month that I can

eat egg yolks and make almond flour muffins with them. Right now all I am eating

is chicken soup and avocado. I also bought some turkey to make soup.

How long should I eat just protein and veggies before going on to almond flour

products and honey?

Thanks for listening,

June

[Guest guest]

Hey, Terri! It's great to see you! I was in Virginia a few months ago, visiting a cousin. I wish I'd realized you were there; we could have met for coffee or something. As far as spring, although it's in the 60's here right now, the forecast is for possible flurries on Thursday, followed by "wintry mix." We will almost certainly get another snow, because of the high school basketball tournament. Now for those who are uneducated, Indiana is a basketball-crazy state. In fact, basketball is known as Hoosier Hysteria. In the late winter & spring, we have a high school tournament that starts with every school in the state & ends up with the state championship. For some weird reason, we almost always get snow during the tournament. People new to Indiana scoff at it, but 9 times out of 10, it happens! So I'll let y'all know.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

> To: Neurosarcoidosis > Date: Mon, 21 Mar 2011 15:49:18 +0000> Subject: Hello> > > Hi Friends,> > I know it has been a long time since I posted but I was on today and> wanted to say Hi from Virginia! I hope everyone is doing as well as can> be expected; spring is here and I don't know about anyone else, but I am> really glad to have some warmer temps and some sunshine.> > I am still undiagnosed (10 yrs) but I plugging right along. I just> wanted to encourage everyone to do the same. I look forward to spending> some time here with my old and new friends and wish you all a great day!> > Terri G.> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Terri, Welcome back, it's good to hear from you, ya were all still here plugging along, well not everyone.  Tracie had to take a whole new course, we don't see much of her, but she is doing really good, so were happy for her. 

Nice to have you back, were here for you. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Hi Friends,

I know it has been a long time since I posted but I was on today and

wanted to say Hi from Virginia! I hope everyone is doing as well as can

be expected; spring is here and I don't know about anyone else, but I am

really glad to have some warmer temps and some sunshine.

I am still undiagnosed (10 yrs) but I plugging right along. I just

wanted to encourage everyone to do the same. I look forward to spending

some time here with my old and new friends and wish you all a great day!

Terri G.

[Guest guest]

Well our temps here in the Northeast (PA) were warm for a couple days and now we are expecting a rain / snow storm that could bring us a fair amount of snow again I am so looking forward to the warmer weather. I planted pansies on the first day of spring so of course we will have snow. Hope all are wellMattSubject: HelloTo: Neurosarcoidosis Date: Monday, March 21, 2011, 11:49 AM

Hi Friends,

I know it has been a long time since I posted but I was on today and

wanted to say Hi from Virginia! I hope everyone is doing as well as can

be expected; spring is here and I don't know about anyone else, but I am

really glad to have some warmer temps and some sunshine.

I am still undiagnosed (10 yrs) but I plugging right along. I just

wanted to encourage everyone to do the same. I look forward to spending

some time here with my old and new friends and wish you all a great day!

Terri G.

[Guest guest]

Marla,

Glad to be back. Sorry that is not on right now but glad she is

doing well. Hope you are well too. Will probably lurk for awhile.

Terri

>

> >

> >

> >

> > Hi Friends,

> >

> > I know it has been a long time since I posted but I was on today and

> > wanted to say Hi from Virginia! I hope everyone is doing as well as

can

> > be expected; spring is here and I don't know about anyone else, but

I am

> > really glad to have some warmer temps and some sunshine.

> >

> > I am still undiagnosed (10 yrs) but I plugging right along. I just

> > wanted to encourage everyone to do the same. I look forward to

spending

> > some time here with my old and new friends and wish you all a great

day!

> >

> > Terri G.

> >

> >

> >

>