Re: hello

[Guest guest]

,

I don't know how far Orlando is from Gainesville, but remember my former

rheumy is in a practice there. (Of course, I don't know if they'd take your

insurance either!) He's a great guy--I've screamed, cried, diagnosed myself

with spinal cancer, etc... in his office (I tend to catastrophize a

little--LOL!)If you want his number I can get it for you.

Ann-Marie

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[Guest guest]

... Is your insurance an HMO or PPO?

Vicki

Helpful Links Info

[Guest guest]

.... I use to live just outside of ville, Fla. and we

would drive to Orlando but I can't remember how far it was. There is a

Mayo Clinic in ville.... how many miles would that be for you?

Vicki

Helpful Links Info

[Guest guest]

Cari

Sounds great to me. Remind me as the date approaches and we can make plans.

Ill be looking forward to it !!!!!

My cats knead me !!!!

[Guest guest]

Vicki,

It's your right as a grandmother to spoil, spoil, spoil the grandkids!

I never had grandparents so I am always excited for my kids when the

grandparents over-do for them and both sets do so often.

Hugs,

Cari

From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Hello

>Date: Fri, 2 Mar 2001 15:46:31 -0800 (PST)

>

>

>.... what state do you live in that you have 80° weather? I'm

>freezing to death. How's your job going? Do you get tired during the

>day?

>

>I got my Easter baskets wrapped for my girls. I'll mail them off

>sometime next week. My daughter is going to kill me.

>

>Ok, hope everyone is enjoying themselves. Take care,

>Vicki

>

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[Guest guest]

My mother suffered for years from Chronic diarrhea. Dx ranged from

Irritable Bowel Syndrome to Colitis. No treatments or meds seem to work.

She had major surgery last Feb. 2000, as her condition had worsened to the

point where she couldn't eat or even leave the house for fear that she

wouldn't be able to find a bathroom in time. She was miserable. The

surgery was useless and it was a painful recovery.

She started seeing an acupuncturist and within a very short time was doing

much better. It only took a month or two for her to be living a normal

life. She goes every week unless they are out of town. My parents took a

cruise and have been doing a lot of traveling. Traveling was out of the

question last year. They are currently in Australia until March 25th. The

change has been amazing and lifesaving. She can eat anything she wants

except lettuce on an empty stomach. I wouldn't of given acupuncturist two

cents a year ago, but if every flares we will absolutely look into

this form of treatment for him. My mother lives in Lady Lakes, FL. about

an hour from . Which reminds me , we will be visiting my

parents the 2nd week in June. Would love to see if we could get together!

Hugs to all,

Cari

>From: catzmeowz@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Hello

>Date: Fri, 2 Mar 2001 23:44:10 EST

>

>Vicki

>Been feeling ok. Knees and hands have been quite achy and giving me some

>trouble but I am trying real hard to keep a positive outlook as I dont want

>to end up back on disability and unable to work again. Ive only been back

>2

>months and I wont lie. I can tell a difference in my strength. Have been

>have a strange buzzing feeling in my feet too and also feel like they are

>falling asleep more than normal. The buzzing is more irritating though and

>I

>mentioned it to Dr. Freak who looked at me as if I had three heads. Said

>he

>had no idea why I would be feeling that and basically just disregarded it.

>Im back to looking for another doctor again but not having much luck. Are

>there any other types of doctors (besides rheumys) that treat PM?? Im even

>considering a holistic doctor here in Orlando. A family friend with lupus

>goes to him and has been symptom free for quite a while now. Any thoughts

>on

>this ??

>

>My cats knead me !!!!

>

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[Guest guest]

I agree with Vicki, he hasn't seemed to have done even the basic reading on

your disease. What a kook. How old is he?

I had to get a note from 's pediatrician that states that can not

get his immunization shots for Kindergarten. The school needs it on file.

He was willing to write on it " until is off of the Prednisone " . Until

the research is in on immunizations I don't want to get his remaining

shots. He is a good guy though and always willing to listen to what I have

learned since we had seen each other last. He even told me at 's first

visit with him that he had been reading about 's disease to get more up

to date on it and that at that time I probably knew more about it then he

did. I really appreciated his honesty. He works very well with 's

Rheumotologist and loves him. We have been very blessed with 's

Dr's.

Hugs to all,

Cari

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Hello

>Date: Sat, 3 Mar 2001 15:30:52 -0800 (PST)

>

>

>

>OH MY GOSH.... This doctor is insane. Well, it's for sure he doesn't do

>any extra reading to keep on top of things. I wouldn't walk..... I

>would RUN to another doctor. That just gave you more ammunition for the

>insurance company.

>

>Have a great day.

>Vicki

>

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[Guest guest]

Good Morning Cari & ...

Cari... that's what I said to my daughter, it's my right. My daughter

and her husband are health nuts.... which I love. The kids don't get

store bought junk food at all. The sweet treats come from dried fruit

for them. That is until Gramma stepped in a few years ago with the

first EASTER basket.... while the kids loved it, the parents were going

nuts. This year the baskets are bigger and a few more gifts in them

besides the candy.

Did your mom go on the cruise to Australia or take the plane? Are they

in Sydney? I can hardly wait till it's time for me to go ... it's only

6 months away.

Hope you have a great day.

Take care,

Vicki

Helpful Links Info

[Guest guest]

Ill be waiting to hear from you !!!

My cats knead me !!!!

[Guest guest]

,

The tentative dates are from Monday June 11th - Sunday June 17th. Will let

you know for sure as soon as the dates are set. It would be great to be

able to get together!

Hugs,

Cari

>From: catzmeowz@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Hello

>Date: Sun, 4 Mar 2001 12:01:04 EST

>

>Cari

>Sounds great to me. Remind me as the date approaches and we can make

>plans.

>Ill be looking forward to it !!!!!

>

>My cats knead me !!!!

>

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[Guest guest]

Hello Vicki,

No one was hurt--thank goodness--front left wheel was bent and some part,

they had to order, so thats why it took so long to fix. Steve went home Wed.

Had it been today--he would be here 3 weeks. We got my lease fixed up here

at the complex I live in--its for 5 months--''''0ct. 31st, and at that time I

will be moving to Mansfield, Tex. The furniture, that I won't be needing we

are giving to my Grandaughter, and June 1st, she will be renting an apt. in

Ft. Worth. She will be going to an Ostepath sp? college working on her

Degree, to become a Missionary Dr. I believe this college is a satalite of

the college in Denton, Tx. Any way, we are all going to be fixed up by Oct.

Steve and I will get married and then we won't have to be apart any

more--which will be wonderful--this being apart, is for the birds!!!!!!

Until again,Love, Ev IBM

[Guest guest]

CHEERS TO U EV !!!

My cats knead me !!!!

[Guest guest]

Ev,

Getting Married?!!! What happy news! Congratulations and Best Wishes to

you both. I am so happy you both found each other.

Hugs,

Cari and

>From: ejspess@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Hello

>Date: Fri, 16 Mar 2001 09:28:45 EST

>

>Hello Vicki,

>No one was hurt--thank goodness--front left wheel was bent and some part,

>they had to order, so thats why it took so long to fix. Steve went home

>Wed.

> Had it been today--he would be here 3 weeks. We got my lease fixed up

>here

>at the complex I live in--its for 5 months--''''0ct. 31st, and at that time

>I

>will be moving to Mansfield, Tex. The furniture, that I won't be needing

>we

>are giving to my Grandaughter, and June 1st, she will be renting an apt. in

>Ft. Worth. She will be going to an Ostepath sp? college working on her

>Degree, to become a Missionary Dr. I believe this college is a satalite of

>the college in Denton, Tx. Any way, we are all going to be fixed up by

>Oct.

>Steve and I will get married and then we won't have to be apart any

>more--which will be wonderful--this being apart, is for the birds!!!!!!

>Until again,Love, Ev IBM

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[Guest guest]

CONGRATULATIONS EV!!!!!!

I'm so thrilled for the two of you. Have you set a date yet? Oh this

is so wonderful..... You must be walking on a cloud. I'm glad he

wasn't hurt in the accident.... but you did get more time together and

that is just the best. Wishing you both the very best.

Hugs

Vicki

[Guest guest]

Vicki,

Can't you wear a mask at night instead of just the candula? I understand exactly how you feel about the fatigue and weakness. I have a daughter in Hiawaii wnd would love to make the trip to see her home. I've considered stopping over for a day or two in CA, but I don't really think that would be enough to break up the trip and let me arrive rested enough to enjoy the visit. Any trip in an airplane just wipes me out. I think that it is the change in air pressure. When I was working I had to travel for the university. I always got sick. Finally, the flares became so bad that I had to quit work

My thoughts and prayers are with you. Hugs, Sue

[Guest guest]

Hi Cari,

I know the feeling of being with a child who " gets it " when first

discovering the magic of reading! It's an amazing and wonderful thing

because we know where that ability will take the child. I'm so glad you

mentioned it in your post because it reminded me of my experiences with that

honor.

My best to ... Annette

Hello

Hello to all our new group members. I am sorry it has taken me so long to

welcome you. I had a crazy week last week and was hardly able to keep up

with the posts. - I have also posted some very, very long messages.

Trust me when I say no one has ever seemed to mind. Your incredible

strength and sense of humor comes through on your posts. They will both

help you get through this. Bill - Welcome, you've found the right group of

people to help you get through the day and to help you find answers. Very

warm, caring and accepting. Jodie -Welcome and so sorry to hear about your

little girl. You have also found the right home for many, many of the

questions that you have now and that will come up in the future.

My name is Cari and my 5 year old son, , was dx with Juvenile

Dermatomyositis at the age of 2 years, 11 months. The disease hit him hard

and quick. Woke up one morning fussing about bending his legs and 3 weeks

later was unable to move at all. 2 1/2 years later he shows no physical

signs of having this disease except for a little bit of the facial rash that

comes and goes with heat, exercise etc... It has been a long road but a

happy ending is in sight. He started out with Solumedrol Infusions and

after taking Prednisone for 28 months is now only taking 100 mg of plaqunil

every other day. He is very strong and strong willed. Never complains or

gives us a clue of when he is in any pain or discomfort and the people on

this site have been his voice for which I will be forever grateful. 's

Dr. has come to trust my " internet friends " .

started Kindergarten this year and is keeping up just fine. I was

bragging two weeks ago about how well he was doing and then last week was

home Tues. with diahreah and vomiting and then again on Thurs with vomiting.

He bounces back so quickly! Or, maybe it's just that he's so used to

feeling yucky and caring on. He is learning some vocabulary words on flash

cards and we add a few more each day. Last night we finally had enough to

put a sentence together. When he read all the words individually and then

read them all together and they made sense I saw the light go on!!! " I'm

reading! " It was amazing. I was blessed enough to be with all 3 of the

kids when they read for the first time and they really got " it " . Brought me

the chills all 3 times.

's hip pain dx is finally in. It seems that a very small number of

children with JDMS get a " lingering Arthritis " towards the end of the

disease. I was very glad to hear her use the words " at the end " of the

disease. She had to post his symptoms on a Juvenile Rheumotology Dr. site

and she got 4 responses and was able to talk to a Dr. who had a patient with

this over the phone. No one can say how long it will last. As of this Nov.

it will be a year since he first started complaining about it and who knows

how long it bothered him since he has to be in a lot of pain before he will

say anything. Yesterday he was walking with the left foot pointed outward.

This arthritis will pass and isn't degenerative, so we will go from here

with positive thoughts.

Vicki - I am worried about you. Maybe you should of gone to the ER. Let us

know how you are doing today.

- Did your Dr. not write you a note for work or isn't it worth it.

I worry about you and those long hours. Hang in there.

Ann-Marie - Only 6 possible problem kids? What will you do with all those

good kids. You won't know how to act. I know you will work magic with the

problem ones. How is your friends kitty doing?

Annette - Always glad to hear your positive thoughts you post to us all.

Teddi - We are still working on getting to the conference. I want to go to

meet you and Vicki more then I want to hear what the specialists have to

say! Keep your fingers crossed.

Mike - Always look forward to your posts. Always make me laugh out loud.

- So glad you asked everyone to post their history's again. I am

always amazed at the strength of the people on this site.

Teeth - has had a few cavities and even had to have a crown put on one

of his teeth. He gets them cleaned every 6 months but one cavity was so

small that we let it go, with the Dentists blessing, for a little while. So

many doctors visits for the kids so the Dentist said let's not put him

through anymore until the cavity needs to be taken care of. Don't know if

the problems were regular kid stuff or because of the the Prednisone.

See , mine are long sometimes too!

Everyone take care and a happy Tuesday.

Hugs,

Cari

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[Guest guest]

Vicki,

You worry me. Especially when you talk about the chest pain coming with

such pressure. You have to take it easy and be kinder to yourself. If you

are still having such pain I hope you will get it checked out! Have a

quiet, restful, chorefree weekend. Please!

Hugs,

Cari

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Hello

>Date: Fri, 7 Sep 2001 17:51:10 -0700 (PDT)

>

>

>

>... I understand that exercise is good for FM but it can aggravate

>PM/DM at times. While it's still good to try too keep moving, I've

>found that some days I can go for my walk and other days it's no go.

>You've got a double whammy going on kid!

>

>I've been feeling pretty good lately and for the last week I've been

>loading up my truck for a dump run. Yesterday I had it all loaded....

>got to the dump and started to remove all the junk I've accumulated.

>Little by little I could feel myself fading. With each bag the work

>became increasingly harder. After about 15 minutes.... someone just

>pulled the plug on me. Now you have to picture me ... at the dump,

>garbage all around, (although we have a very neat garbage dump with

>paved roads) and I need to get up in the bed of the truck to sweep it

>out... I tried to lift my leg which now felt like it weighed 60lbs... I

>finally just left it in there and drove home. Since then I've been in

>my down mode.... sleeping more, don't want to eat, have no energy,

>grouchy as can be and I do hope this man that's sitting in the middle of

>my chest, gets off REAL soon. Now doesn't that sound lovely?

>

>Anyway, I do hope everyone else is having a good day.

>

>Take care,

>Vicki

>

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[Guest guest]

Vicki,

Why in the world would you attempt such a HUGE job? You need to find a

friend to help you with big things like that. Get some much needed rest!

Annette

Hello

... I understand that exercise is good for FM but it can aggravate

PM/DM at times. While it's still good to try too keep moving, I've

found that some days I can go for my walk and other days it's no go.

You've got a double whammy going on kid!

I've been feeling pretty good lately and for the last week I've been

loading up my truck for a dump run. Yesterday I had it all loaded....

got to the dump and started to remove all the junk I've accumulated.

Little by little I could feel myself fading. With each bag the work

became increasingly harder. After about 15 minutes.... someone just

pulled the plug on me. Now you have to picture me ... at the dump,

garbage all around, (although we have a very neat garbage dump with

paved roads) and I need to get up in the bed of the truck to sweep it

out... I tried to lift my leg which now felt like it weighed 60lbs... I

finally just left it in there and drove home. Since then I've been in

my down mode.... sleeping more, don't want to eat, have no energy,

grouchy as can be and I do hope this man that's sitting in the middle of

my chest, gets off REAL soon. Now doesn't that sound lovely?

Anyway, I do hope everyone else is having a good day.

Take care,

Vicki

[Guest guest]

Hi Cari.... I've had the pressure in my chest checked out 4 times now.

They have run an EKG on me all 4 times to make sure my heart is not

involved. They're pretty sure it's the muscles that constrict making it

harder for me to breath. And, it does feel like a man is sitting on my

chest. I try to take it slow, what took me a week to load my truck ...

would have taken a couple hours if I was well. I think it was also the

combination of the work and the sun being out. I don't seem to have

that problem when there is cloud cover. I work in the yard 1/2 hr every

night (if I feel good) after the sun has set. I went to the dump around

2pm.... I've gone through this so much that I almost expect it whenever

I'm up and moving.

I'll rest for the next week .... dang, just when I wanted to get some

other stuff done around here... lol

Thanks for caring....Hope your family is going to have a great weekend.

Hugs

Vicki

[Guest guest]

Hi Annette

LOL.... It really wasn't a big job... at least I didn't think so. I

didn't load my truck like I would if I was healthy. It was some tree

limbs and dried grass that I put in bags. I tried to unload one limb at

a time. I started to run into a problem when the limbs became tangled.

I had to expel more energy trying to untangle them. Nothing is easy

that I do.

Where I live it's really, really hard to find ANY one who wants to do

some work. If they agree to it... they don't show up! Or, if they

agree to it they want there money UP FRONT....LOL... they must think

I've fallen off a turnip truck. I did find a young man that wants

work but he also wants to be paid 6.50 an hour and that starts when he

leaves HIS door. HA! I didn't get paid that way and neither will he.

Once that gets started everyone will want that.

For the next few days it will be rest, rest and more rest. Gosh, I just

love this.

Hope you have a great weekend.

Take care,

Vicki

[Guest guest]

Vicki,

OK. I feel better that we know it isn't your heart but do try to take it

easy. Easy for me to say, right? So hard when you have chores you want to

get done.

We did have a good weekend. was invited to a birthday party today at

a Gymnastics place. I had my doubts about the whole thing anyway but

is always up for a party. He really wanted to go. The kids all went on

Trampolines and on balance beams where they jumped off. Actually, the idea

was for two kids to face each other and try to knock each other off a

balance beam with these long spongy things. Not a good idea, I thought,

under any circumstances, but can't jump down from over 3 feet and put

that kind of impact on his hips. He did shed a few tears but then the party

moved onto this big foam pit and that was perfect for him. The other mom's

looked at me like I was some meany a few times. Oh well.

I think I forgot to tell you all that 's hamster, Flower, passed away

last Sunday. He was so very upset for about 3 days. He cried and stood at

her cage begging her to wake up. He said, " I loved her so much, why did she

have to leave me " , " I will never be happy again " and other such things.

Really stuff I was surprised to hear him say. We buried her in the backyard

with a mum for a headstone. It broke my heart. We did go get him another

hamster on Wednesday. It is an albino one and he named her, Frosty. He

takes really good care of his pets. He said he still misses Flower though.

Flower was 2 1/2 years old. That is darn old for a hamster. She was

actually turning grey and had lost the hair on her bum. It dawned on me

that she had been around for as long as could remember. Actually

about the time he got sick. Well, may Flower rest in peace.

saw his Rheumy on Wed. She didn't run any labs and we don't go back

for 3 months!!! Isn't that great!? She got some answers from her

colleagues about 's hips. She shared the e-mail responses with me. It

seems a small percentage of children, who are post DM, experience a

" lingering arthritis " in their joints. Often times in the hips. They don't

know how long it will last and of course, no doctor ventured to say. There

was some general concerns about the pockets of fluid in 's hips but no

answers. Just a kind of wait and see attitude. There were suggestions of

cortisone shots and pulse infusions of steroids but those solutions and

their side effects are a lot worse then the problem. He complains of pain

at times but declines advil. Says that he will just rest and watch a movie

or lay on his bed. He is doing very well with managing his own limitations.

He was complaining that his class goes too fast everywhere. " They go to

fast to lunch, too fast to P.E. " . I talked to the teacher about this and

was told that they have noticed and one of them offers to walk slower with

but he declines. Gosh darn it, he is bound and determined to keep up.

I have to let him make up his own mind about these things.

I hope everyone had a peaceful weekend and everyone got a chance to rest.

Hugs,

Cari

From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Hello

>Date: Sat, 8 Sep 2001 09:24:41 -0700 (PDT)

>

>

>Hi Cari.... I've had the pressure in my chest checked out 4 times now.

>They have run an EKG on me all 4 times to make sure my heart is not

>involved. They're pretty sure it's the muscles that constrict making it

>harder for me to breath. And, it does feel like a man is sitting on my

>chest. I try to take it slow, what took me a week to load my truck ...

>would have taken a couple hours if I was well. I think it was also the

>combination of the work and the sun being out. I don't seem to have

>that problem when there is cloud cover. I work in the yard 1/2 hr every

>night (if I feel good) after the sun has set. I went to the dump around

>2pm.... I've gone through this so much that I almost expect it whenever

>I'm up and moving.

>

>I'll rest for the next week .... dang, just when I wanted to get some

>other stuff done around here... lol

>

>Thanks for caring....Hope your family is going to have a great weekend.

>

>Hugs

>Vicki

>

_________________________________________________________________

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[Guest guest]

Hi Cari.... Poor ... He's been so good throughout all of this...

then his hamster died....I didn't know that hamsters only lived 2

yrs???? They're small, you would think they would live forever.

Cari, I don't know if you've tried this or not and you might ask the

doctor about it but I take the glucosamine chondroitin for my arthritis.

It really works to take the pain away. My doctor told me to make sure

it was both, glucosamine chondroitin, this was when I was having a lot

of pain in my hips and hands. This might help his hip pain.

Take care,

Vicki

[Guest guest]

Thanks for the advice Vicki. I wrote down the name of that medicine. I see

's Dr. on Tuesday to further discuss our support group. I will ask her

then. Thank you!

Hugs, Cari

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Hello

>Date: Sun, 9 Sep 2001 09:21:22 -0700 (PDT)

>

>

>

>Hi Cari.... Poor ... He's been so good throughout all of this...

>then his hamster died....I didn't know that hamsters only lived 2

>yrs???? They're small, you would think they would live forever.

>

>Cari, I don't know if you've tried this or not and you might ask the

>doctor about it but I take the glucosamine chondroitin for my arthritis.

>It really works to take the pain away. My doctor told me to make sure

>it was both, glucosamine chondroitin, this was when I was having a lot

>of pain in my hips and hands. This might help his hip pain.

>

>Take care,

>Vicki

>

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[Guest guest]

Hello there,

My name is ette and I've just joined the group. My son will be having

surgery within the next 9 months to a year to correct a pretty bad

underbite. I was delighted to find a list such as this one so I can learn

from you about what to expect and pass it on to him. Who knows, maybe

someday he may even join the list.

In the mean time, if any of you have undergone this particular type of

surgery and have any comments I can share with Allan about what to expect,

I would appreciate it. Or even specific questions I should be asking the

orthodontist when we go for the consultation in early September. I'd

especially be interested to hear about insurance coverage for this

procedure. The orthodontist has not had one case covered yet.

Thanks in advance for any information you send my way.

ette

[Guest guest]

My insurance provides $1,000 flat lifetime benefit for orthodontia.

But my major medical covered the surgery. The ortho is small money,

compared to the surgery. your docs should be able to help you file

for whatever you are due, and that should be one question on your

list. Also how long, how much, what you gonna do -- bands, ceramic,

metal, headgear, SARPE or not? What surgery? Etc., etc. How often

will I see you? Are you available readily if I need you? All the

things you will want to know when he puts stuff in your mouth that

may hurt or be uncomfortable, but is working for your benefit.

Cammie

> Hello there,

> My name is ette and I've just joined the group. My son will be

having

> surgery within the next 9 months to a year to correct a pretty bad

> underbite. I was delighted to find a list such as this one so I

can learn

> from you about what to expect and pass it on to him. Who knows,

maybe

> someday he may even join the list.

>

> In the mean time, if any of you have undergone this particular type

of

> surgery and have any comments I can share with Allan about what to

expect,

> I would appreciate it. Or even specific questions I should be

asking the

> orthodontist when we go for the consultation in early September.

I'd

> especially be interested to hear about insurance coverage for this

> procedure. The orthodontist has not had one case covered yet.

>

> Thanks in advance for any information you send my way.

> ette