[Guest guest]

I don't like it. You better make sure you check your creat soon.

Mojo

Mojo

Those are tests done in the last 3 weeks. Each one goes higher.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

I don't like it. You better make sure you check your creat soon.

Mojo

Mojo

Those are tests done in the last 3 weeks. Each one goes higher.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

I don't like it. You better make sure you check your creat soon.

Mojo

Mojo

Those are tests done in the last 3 weeks. Each one goes higher.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

Hi ,

Hope you're doing better today. I know what you mean about the blisters! I've been there. My Mom used to cover the bad areas of sunburn with cold tea bags. It was very soothing. I guess that is an old world therapy for sunburn.

I can't believe you went outside and mowed the grass with a bad sunburn! You are a gluten for punishment girl!

Karol

Karol

No, I'm not usuall sun sensitive. I went to the pharmasists today and he told me to get some benedryl and lanacane. He said the lanacane would help ward off infection and it helps relieve the pain and itching. And it sprays on which helps! Let me tell ya, my arms are ugly as hell from all the little blisters! I put on a sweatshirt when I went up to the lab to do more blood work and it was a big mistake! The sleeve kept rubbing on it and made it hurt. So, that was a bad idea! But I kept it on to mow some of the lawn. Don't need any more sun getting to it!

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

, parsley is a diuretic and it's all natural. You can do it either from the green parsley, or get parsley root. Do not do parsnip, it is not the same thing. Take a brunch and brew some tea. Drink it while it is still warm, it tastes disgusting when cold. I usually do two bunches of the green stuff with 3 cups of water. It's the old fashion way of getting rid of extra fluids. I know one of the group members also mentioned asparagus as a diuretic a while ago, but I haven't tried it myself.

Mojo

Kimi & Mojo

They have taken me off the hctz ,which is like the lasix, because of whatever problem I'm having with my kidneys right now. I noticed last night my ankles were a little swollen so I hope they don't get worse. They put me on norvasc to keep the blood pressure down for now.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

,

In case no one tells you .....Norvasc will cause swelling. I was

on it for 2 months couldn't figure out why I was swelling so bad. so i

asked....the Dr said it was the Norvasc. Just an FYI

Love, Becky

(Brat) wrote:

They have taken me off the hctz

,which is like the lasix, because of whatever problem I'm having with

my kidneys right now. I noticed last night my ankles were a little

swollen so I hope they don't get worse. They put me on norvasc to keep

the blood pressure down for now.

"The LUPIES Store" Come check out our store...

http://www.cafepress.com/thelupies

"The LUPIES Web Page"

http://www.itzarion.com/lupusgroup.html

"The LUPIES online photo albums!"

Check out what your fellow Lupies look like...

http://www.picturetrail.com/lupies

[Guest guest]

,

In case no one tells you .....Norvasc will cause swelling. I was

on it for 2 months couldn't figure out why I was swelling so bad. so i

asked....the Dr said it was the Norvasc. Just an FYI

Love, Becky

(Brat) wrote:

They have taken me off the hctz

,which is like the lasix, because of whatever problem I'm having with

my kidneys right now. I noticed last night my ankles were a little

swollen so I hope they don't get worse. They put me on norvasc to keep

the blood pressure down for now.

"The LUPIES Store" Come check out our store...

http://www.cafepress.com/thelupies

"The LUPIES Web Page"

http://www.itzarion.com/lupusgroup.html

"The LUPIES online photo albums!"

Check out what your fellow Lupies look like...

http://www.picturetrail.com/lupies

[Guest guest]

,

In case no one tells you .....Norvasc will cause swelling. I was

on it for 2 months couldn't figure out why I was swelling so bad. so i

asked....the Dr said it was the Norvasc. Just an FYI

Love, Becky

(Brat) wrote:

They have taken me off the hctz

,which is like the lasix, because of whatever problem I'm having with

my kidneys right now. I noticed last night my ankles were a little

swollen so I hope they don't get worse. They put me on norvasc to keep

the blood pressure down for now.

"The LUPIES Store" Come check out our store...

http://www.cafepress.com/thelupies

"The LUPIES Web Page"

http://www.itzarion.com/lupusgroup.html

"The LUPIES online photo albums!"

Check out what your fellow Lupies look like...

http://www.picturetrail.com/lupies

[Guest guest]

Hi ,

Just read your e-mail and noticed that you are from Yorkshire. I am from

Beverley, near Hull, and have a 10 week old boy with unilateral clubfoot. He had

a tenotomy a little over a week ago and will get his first boots later this

month. Mr G V is our consultant (Hull Royal Infirmary) and he is Ponseti

trained. We have had a fairly trouble-free experience of the treatment so far

but I guess its early days yet!

In answer to your query about the length of time in the DBB, I seem to recall

reading that Dr Ponseti recommends about 17 hours per day at first (after the

initial 3 month period), and the time required can then be gradually reduced,

depending on the severity. I asked our physio about this and she said that as

long as baby wears them for a good 12 hours at night that is the main thing. I

dont think 14 hours is too little but if in doubt you could e-mail Naoime Davies

at Manchester (I haven't tried e-mailing Dr Ponseti so far).

Where abouts in Yorkshire are you by the way?

Rich

Hi,

My little girl is just 11 months old today. She was born with bilateral cf and

cast using Ponseti method from 3 days old. She did not need the tenotomy in

either foot and immediately went onto the DBB after castings. She wore them full

time until just a month ago when my Dr. said that she could go down to naps and

nightime, giving a total of about 14 hrs a day wear.

Although her feet look good, I am slightly concerned that she does not really

want to weight bare much and I have noticed that when she does sometimes her

right foor (the one that was slightly stiffer) rolls outwardsI may just be being

paranoid, I have an extremely good and well trained Ponseti Dr. but acouple of

sleepless nights are taking their toll on my nerves.

I am going to see the Dr. on Monday, but I have one or two questions to all of

you with a little more experience. Firstly, does 14 hours sound like enough time

in the DBB?

Secondly if I was to email Dr. P. , what kind of photos (that is angles) should

I take of her feet and What is his email address? He must get a frightening

amount of mail -how long does it take to get a reply?

Any help?comforting thoughts would be most welcome. (Yorks. U.K.)

[Guest guest]

Hi ,

Just read your e-mail and noticed that you are from Yorkshire. I am from

Beverley, near Hull, and have a 10 week old boy with unilateral clubfoot. He had

a tenotomy a little over a week ago and will get his first boots later this

month. Mr G V is our consultant (Hull Royal Infirmary) and he is Ponseti

trained. We have had a fairly trouble-free experience of the treatment so far

but I guess its early days yet!

In answer to your query about the length of time in the DBB, I seem to recall

reading that Dr Ponseti recommends about 17 hours per day at first (after the

initial 3 month period), and the time required can then be gradually reduced,

depending on the severity. I asked our physio about this and she said that as

long as baby wears them for a good 12 hours at night that is the main thing. I

dont think 14 hours is too little but if in doubt you could e-mail Naoime Davies

at Manchester (I haven't tried e-mailing Dr Ponseti so far).

Where abouts in Yorkshire are you by the way?

Rich

Hi,

My little girl is just 11 months old today. She was born with bilateral cf and

cast using Ponseti method from 3 days old. She did not need the tenotomy in

either foot and immediately went onto the DBB after castings. She wore them full

time until just a month ago when my Dr. said that she could go down to naps and

nightime, giving a total of about 14 hrs a day wear.

Although her feet look good, I am slightly concerned that she does not really

want to weight bare much and I have noticed that when she does sometimes her

right foor (the one that was slightly stiffer) rolls outwardsI may just be being

paranoid, I have an extremely good and well trained Ponseti Dr. but acouple of

sleepless nights are taking their toll on my nerves.

I am going to see the Dr. on Monday, but I have one or two questions to all of

you with a little more experience. Firstly, does 14 hours sound like enough time

in the DBB?

Secondly if I was to email Dr. P. , what kind of photos (that is angles) should

I take of her feet and What is his email address? He must get a frightening

amount of mail -how long does it take to get a reply?

Any help?comforting thoughts would be most welcome. (Yorks. U.K.)

[Guest guest]

Hi Ellen,

I do have a beautiful family.....I will be adding some more pictures soon I hope ....My son has burned a Disc for me and is mailing it .....someday!

I don't have that feeling of losing my **** very often, but when I have to do a lot of walking......a hysterectomy at 70 ....oh no!.......there are a lot of names for that body part all right and new ones by the day!

My poor foot is swollen and black & blue......but strangely enough ....doesn't hurt....just looks like an elephant stepped on it!

C.

...thanks to Deanna I was blessed to be able to see your lovely photos. You are a beautiful woman. You also have a sweet granddaughter and darling great grand daughter. She is a beautiful baby with a beautiful name. You were blessed, I am so glad you had the day to be with them, after all you went thru.I don't know if you have that feeling often, or have talked to a dr. about it. My mom had that and they had to tie up her bladder, then at the age of 70 she had to have a hysterectomy. I would speak with a dr. about it, don't want to pry but I do care about you. Hope your foot is feeling better. And I had to laugh at your nickname, as we use to call it that when we were younger. I wonder how many different nicknames are out there for it........Have a great night and thank you for sharing your pictures with us.Love & Friendship,Ellen"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

Hi ,

I was born and bred in east Hull, as was my wife. We moved to Beverley about 5

years ago when we bought our first house. We have friends probably not too far

from you-a village called Aberford near Leeds.

Glad to hear things have gone well so far and you've found a Consultant you're

happy with. We considered using Naomie Davies at Manchester but decided on Mr

as he also has been trained by Dr Ponseti and is very close to home. It

must have been hard for you travelling to Sunderland each week!

I know what you mean about e-mailing Dr Ponseti but I'm sure he'll be happy to

help, even if we do live thousands of miles away!

Do you have any tips for when Ben (our son) starts wearing the boots in a couple

of weeks?

Rich

Hello Rich,

My parents in law live in Kirkella, so I know Beverley a little bit and have

dined in the Beverley Arms on a number of occaisions! My husband was brought up

in Hull - are you originally from East Yorks. or new to the area? We live in

West Yorks in a village called Ackworth, about 8 miles from Wakefield and 15

from Leeds.

We researched Ponseti quite thoroughly before our little girl was born and

discovered Mr. DeKiewiet in Sunderland,who I think was the first in the UK to

use the method and trained with Dr. Herzenberg. He has also had Dr. P. to stay

in Sunderland. Now that's a strange thought! He is excellent and I would highly

recomend him if you need any other advise yourself.

Yes, things for us have also gone very well so far and maybe that is why I am

feeling so nervous now that she is out of the boots a little more. It is me that

needs weaning off them not her!!

I have an appointment with Mr. D.K. next Monday (he lets you go almost whenever

you want - super dedicated)so maybe I'll up the time in her boots until I see

him just to be on the safe side and if I'm still nervous afterwards perhaps

email Dr. P. - I don't really feel worthy to bother him though!! He's such a

legendary figure!

Good to hear from another Brit! Keep in touch!

[Guest guest]

,

Our doc also said approximately 14hr/day after the 23/7. But having been

here and read and learned I put her in them 16-18 till her next visit, when

he again said 14hr/day. At that point I made sure she got 16 hours,

sometimes more but no less. Again at the doc and he tells me nights and

naps - which translated to roughly 12-14 hours. So I dropped it to making

sure she got 14 hours without fail and sometimes more. Next visit - he

says nights only. She wasn't walking then so I kept her at 14. Not a big

deal because she's young and I can do it now easier than I could if she was

older. So dh and I have always figured more can be better - why

not. Finally after she started walking I dropped her to 12hr/day because I

don't want her crawling in it too much. She still ends up wearing it for

an hour or more every morning but if I put her in her high chair with

something to eat she doesn't have to crawl around for that time. Never

once did our doc say she needed to be in it that long - I never lied to him

about how long I kept her in them. He would ask and I told him. He always

said she didn't need to be in it that long.

This worries me a bit because I get the feeling they aren't getting the

results they expected from doing the Ponseti tx. But I can't help but

wonder if they're telling parents who aren't quite as educated as I am

(from being here) to go from 23/7 to 12-14 how many are relapsing? Our

orthotist said he hasn't seen as many babies being fitted for the DBB

lately - there was a big rush after they got back from Iowa and lots of

babies were getting them but it's died off a bit. Our doc also had some

strange theory about babies tolerating the DBB when older and something

about they didn't know if it was because they were older or if it was

because their feet were bigger that they're not tolerating it. I still

have to clarify that. I should email him I suppose.

The point to this is that now is easy to do the DBB longer. If/when

there's a problem later it will be more difficult to put the time in. When

they're little and not walking it's very simple to do the long hours. So

if you think you can do it now give it some consideration. It's not like

your doc is at your house making you take the DBB off at a certain time. I

also found that when she was little she'd fall asleep often enough that if

I didn't watch the clock that she could get a couple of extra hours in

napping and it was no skin off my back or hers to keep it on.

Darbi also walked at 10.5 mo's. Which is pretty early if you ask me. Well

before either of my boys walked who aren't CF. So keeping her in it that

long certainly didn't hinder walking in our case. Babies all walk at

different ages anyway - so I am kind of getting from hearing about walkers

from this group that they walk very likely when they were going to walk if

they didn't have CF - no big deal.

HTH with making your decision. I would like more information about

reducing the time to 12-14 right off the bat but I wasn't going to be the

one to offer up my child as guinea pig for that so that's why we went with

the extended times even though our doc said she didn't need it. I am all

for questioning the doc. I've had lots of experience with other conditions

and docs that aren't always right so it's difficult for me to accept that

we should put complete trust in the doc - for anything. But that's just me :~}

Kori

Mama of

Kenton - 6/98

Merek - 3/00

Darbi - 3/28/03 - Rt. CF - DBB 12hr/d

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

[Guest guest]

, hope you are feeling better today.

Mojo

Re: Vent: In Law Saga Visit/Saga Continues.... Did I mention they brought an gift? The FLU!!!!e

, I just think they take advantage of the fact that you cannot say "no". They will use it and abuse it until you tell them otherwise or do something to stop it. I'm not saying it is your fault. It isn't. People shouldn't have to be told that they are abusing one's kindness. I think you should just draw a line somewhere. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

, hope you are feeling better today.

Mojo

Re: Vent: In Law Saga Visit/Saga Continues.... Did I mention they brought an gift? The FLU!!!!e

, I just think they take advantage of the fact that you cannot say "no". They will use it and abuse it until you tell them otherwise or do something to stop it. I'm not saying it is your fault. It isn't. People shouldn't have to be told that they are abusing one's kindness. I think you should just draw a line somewhere. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

Thank you......Always wanted one............just never knew how to send

my pics. Computer degenerate here........

Becky

(Brat) wrote:

I just made a photo album for you

and added your pics to it. Check it out!

"The LUPIES Store" Come check out our store...

http://www.cafepress.com/thelupies

"The LUPIES Web Page"

http://www.itzarion.com/lupusgroup.html

"The LUPIES online photo albums!"

Check out what your fellow Lupies look like...

http://www.picturetrail.com/lupies

[Guest guest]

Thank you,

I have one with 1 photo in it! I guess that will change, huh.

--

I'll have to work on a picture album for you. Not sure if you have one or not, if you don't, ,you will! I'll let you know when it's done.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thank you ma'am

--

Your pics are in your album!

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thank you ma'am

--

Your pics are in your album!

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hey, any changes in the creat levels? Or are you waiting for the results?

Mojo

Barb

I went for my routing blood work yesterday and they handed me another one of those containers for another 24 hour catch. Guess the dr sent a note over to them. Fun wow!

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

My weekend was really nice. We visited our friends in the Poconos. They have a nice house, plenty of space, a huge yard. A boy Sebastian's age, and a 5 year old daughter, so my kids did not bother us at all. They had so much to do together. We went to a lake on Sunday, with a campfire and doing stuff like hay-rides and so on. I did study with Sebastian about three hours each day, but since I wasn't busy with house stuff it wasn't bad at all. I helped my friend of course. Didn't expect her to cook for everyone, we all chipped in and did stuff together.

The only thing that bothered me throughout the weekend was the business with Sebastian's teacher and his finals. He's doing language arts and reading today. Each day there are some tests. They're done with tests on Friday and then last day of school is June 11. I will have more to do, but I will breath easier knowing I don't have to deal with this teacher any more. I will just have to pray she's gone by the time Kasper gets to 4th grade.

How was your weekend? Did you do anything interesting? Sorry, I was on no e-mail, there was no way I was going to be able to catch up with everything so I don't know who was doing what.

On another note: I miss . I keep missing her posts so full of life. I have been thinking about that more and more.

Mojo

Mojo

How was your weekend?

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

I agree, we better get her straightened out. How dare she get so sick?!?!?!?

As far as is concerned, I never look at it if something happens to someone invincible then what should the rest of us do. I believe in providence. I know things are meant to be. I just so miss 's wisdom, her jokes, her kind words.

Mojo

Mojo

Sounds like you had a pretty good time. That's good, you so deserve it!

I know, I think of something and think, hey, have to ask , only to remember I can't. I think the worst part is that she was just so invincible(sp), and if that happened to her, what's going to happen to the rest of us? Now we have to get Mike fixed! She has to stay with us forever!

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

I agree, we better get her straightened out. How dare she get so sick?!?!?!?

As far as is concerned, I never look at it if something happens to someone invincible then what should the rest of us do. I believe in providence. I know things are meant to be. I just so miss 's wisdom, her jokes, her kind words.

Mojo

Mojo

Sounds like you had a pretty good time. That's good, you so deserve it!

I know, I think of something and think, hey, have to ask , only to remember I can't. I think the worst part is that she was just so invincible(sp), and if that happened to her, what's going to happen to the rest of us? Now we have to get Mike fixed! She has to stay with us forever!

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

I agree, we better get her straightened out. How dare she get so sick?!?!?!?

As far as is concerned, I never look at it if something happens to someone invincible then what should the rest of us do. I believe in providence. I know things are meant to be. I just so miss 's wisdom, her jokes, her kind words.

Mojo

Mojo

Sounds like you had a pretty good time. That's good, you so deserve it!

I know, I think of something and think, hey, have to ask , only to remember I can't. I think the worst part is that she was just so invincible(sp), and if that happened to her, what's going to happen to the rest of us? Now we have to get Mike fixed! She has to stay with us forever!

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

Oh Mojo, thank you so much for saying that! I thought I was the only one and didn't want to say anything in case it might upset anyone. Everytime that I see a post about animals, mostly dogs, I think of her and everytime that I see the posts with all of the lupus info that she so faithfully provided everyone. I guess I just plain miss reading about her, like the last post that I got from her about her brother fixing her van.

a C

On another note: I miss . I keep missing her posts so full of life. I have been thinking about that more and more.

Mojo

----- Original Message -----