Hello!

[Guest guest]

Stasia,

Thanks for checking in! I was wondering how your father was doing. It was

very nice to hear a positive report on his condition.

Also very good report on ! Glad to hear that you are seeing

improvement AND to hear that he seems to like his helmet! That surely makes

the whole process alot easier!

Take care and hopefully we'll hear from you again soon.

Marci (Mom to )

Oklahoma

[Guest guest]

Stasia, glad to hear is getting rounder and I am happy to hear

that your father is doing well too.

Amy(Max's mom)

[Guest guest]

In a message dated 12/11/2001 6:56:09 AM Central Standard Time,

irishcat01@... writes:

> Just wanted to say good morning

Welcome to the group ann. My name is and I am also 47. Nice to

have you aboard.

[Guest guest]

--- irishcat012001 <irishcat01@...> wrote:

> Just wanted to say good morning.I have just joined

> this group.My name

> is ann and I have been diagnosed with CMT for

> 24 years.I am now

> 47 years old and I am doing pretty good living with

> this disease.I

> hope to be talking with all of you soon.Everyone

> have a great day.

> ann

>

> Welcome ann, I'm Jim and fairly new here, just

dianosed about a month ago at 51 years of age, I mean

experience. Do you know what type you are?

Looking forward

Jim Nash

__________________________________________________

[Guest guest]

Hi Heidi. It's to hard to catch up with this group after being away for 2

weeks. We are just

to chatty!

I looked up Decapeptyl, but most of the information is in foreign language, so

I'm wondering if it's available in the country. I'll keep looking to see what I

can find. I wish you luck with your baby venture.

You may want to ask your doctor about taking high doses of calcium.

High intakes of calcium supplements may interfere with the absorption of other

nutrients such as iron and zinc. Intake of calcium supplements also may

interfere with the absorption of concurrently consumed medications, and vice

versa. Other potential adverse effects of chronic intakes of high doses of

calcium include milk-alkali syndrome (ectopic calcium deposition),

hypervitaminosis D (i.e., in the case of supplements containing calcium and

vitamin D), and possible hypercalciuria leading to kidney stone formation.

However, recent studies indicate that increased intake of calcium does not

increase risk of kidney stones. Moreover, restricting dietary calcium may

increase urinary excretion of oxalate which in turn increases risk of kidney

stones.

http://www.oznet.ksu.edu/ext_f & n/_timely/calcium.htm

Hopefully taking this med for 6 months won't affect your bones. Will you go

through steroid withdrawal after stopping the injection?

Keep up your good attitude! The mind is very powerful and having a positive

attitude is so good for you.

a

[ ] Hello!

Hi there everyone!

Gosh I have been lazy keeping up! I went to South Africa for work for 2

weeks and just never seemed able to catch up on all the posts when I got

back! I gave up on most but have read a ton so hopefully didn't miss

anything major! I love the weight loss idea - sounds like a great

initiative and Rainy Sue I think you are a star motivating everyone when you

feel so lousy. I hope you get better soon!

The RA has been quiet controlled but I've been having so many " drama's " and

hassles with my famous baby mission that I have been a bit quiet all round.

The gynae just put me on a drug called Decapeptyl (sp?), to get the

endometriosis under control. It's one injection a month for 6 months and

costs an absolute fortune. It basically puts you into full " menopause " for

6 months -bit weird at 26 years old - should get hot flushes, the works

apparently! He's giving me 6 months after that to fall pregnant and if that

doesn't work we will try Invitro. I'm a bit worried about the Decapeptyl as

it apparently causes loss in bone density and with the Prednisone on top of

that I am scared I won't have a skeleton left! Tried to call my Rheumy

about it but she's been really busy. Has anyone here taken something

similar? I'm thinking of just " overdosing " on calcium supplements to make

up for it but don't know if that will help.

That's enough moaning out of me for today! I've started counting my

blessings every morning lately, out loud in the shower and in the car on the

way to work, (I must look pretty daft!). I add in a few positive uplifting

" feeling " words like LOVE, CONFIDENCE, ENTHUSIASM, ENERGY etc. . It really

works and puts me in a good mood for the day! Strange, but worth a try if

anyone is feeling a bit down. You have to smile, even better if you can

laugh!, and say it quiet loud, and with ENTHUSIASM for it to work!

I will start catching up but in the mean time I wanted to send all those who

are worried and in pain a big hug and prayer for a better day today!

Hugs, Heidi

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

HI Lynn, Welcome!! I was just going to say I have been on MTX for 6yrs and ,

well, it has worked for me. My only problem has been thinning of hair on

top.........but I take so many other meds I try not to blame it all on the

MTX. I take 15mg orally on THurs and 2 mg floic acid every other day .

I was on Plaquenil for about 4 yrs....never had any problems...but my RD said

we' d try to get rid of it and see if it made any difference ......and it

didnt.One less med.I also take 4mg medrol a day(a steroid)......it was a

miracle drug for a few months......but then I had sinusitis and Sojren's

Syndrome and was on ABs for 6weeks......so now it seems I wake up achy again

like before ....not as bad yet but I dont want to increase it even if my dr

says I can.I avoided steroids orally for 3-4 yrs....and I do find I dont put

on the lbs with the medrol like I did with just the

predisone....anyway......Good luck........Judy in AZ

[Guest guest]

Hello Lynn, I have been on Methotrexate for about 10 years now, until 8 months

ago I was on 30 mg. for a few years. I am currently on 27 mg injections of

methotrexate, it seems from reading some of the messages I am lucky in that I

have not lost any hair, have always worn mine short (as a hairdress by

profession the longer the hair the more weight and if the folical is tender from

the meds, the weight will give it a bigger chance of falling out) it has not

lost its shine. I am strict about my blood work and do my doctor says, he knows

best ( I am not sure that is always the case from the sounds of things). I have

tried all the drugs they have out and methotrexate has worked the best, I

haven't tried much prednisone except a taper to get me through bad flares. As a

matter of fact prednisone scares me to death, will put it off as long as

possible. I also have type 2 diebetes and prednisone raises your blood sugar.

Anyway I will stay on the methotrexate as long as I can if the other alternative

is prednisone. Just my choice I obviously don't know everything.

I am 51 yrs old, and have had RA for 15 years and although I am limited in what

I can do and I have inflamed joints that are very touchy, and have lost a lot of

strength in my hands, have very little damage. Everyone tells me I don't look

like I have RA, I guess that is good, but doesn't help me get in and out of my

car or a chair.

After reading many of the messages in this group I am counting my blessings.

Also hoping that everyone can get better with more research of this disease.

Hope everyone is having a nice sunshiny spring weekend.

in WA

Lynifyni <lynifyni@...> wrote: Good Morning Everyone,

I was lurking for a while, and have decided pipe up! I'm Lynn, 52, live in

VA...have RA in my hands and now, rheumy suspects in my big toes. I also

have a rare muscle disease called dermatomyositis which affects my skin and

the proximal muscles. I have OA in neck, spine and knees.

I was started on 60mg. of Prednisone for the DM back in November and

decreased until I hit 10 mg. 3 weeks ago. I also take Plaquenil. I know

the mega dose of Pred. really did knock down my pain from the arthritis.

Boy, do I recognize myself in your messages! Such a moon face!! I was

embarrassed to go out and be seen in public or in a meeting at work. I have

short hair, so no help there. I, too, lost a lot of hair (had curly/frizzy

hair....once on Pred., I had a thin cap of straight, flat hair! Oy va!) I

let my hair grow long in the back to cover my camel's hump. Did any of you

get that dreadful lump of fat at the back of your neck? Mine is huge! And

yes, the fat redistributes itself to your upper trunk...so I got a lot of

" help " around my waist. Darn! I really didn't need the help. My rheumy

tells me the hair will grow back, but it lags 3 months or so, after the

Pred. taper.

But things are improving...I'm also hypothyroid, and switched from Synthroid

to Unithroid and have experienced improvement in hair growth already.

Can't do HRT cause I've had a second blood clot (one in each leg) and am on

coumadin for life! I do natural herbal remedies for my hotflashes. I also

have steroid induced glaucoma...so please be careful of your eyes on

Prednisone and Plaquenil.

My rheumy is talking about MTX because my disease flared again, she upped my

Pred. to 15 mg. for the next two weeks, but I seem to be getting worse.

I've been reading up on MTX and am not really happy...I'm wondering if it

will " enhance " the coumadin and maybe not be a good thing to take if one is

already on blood thinners. Anyone have any experience here? I have heard

you can get some pretty bad headaches.

So far, the increase in PRednisone has not helped with my rash from the DM,

in fact, I'm getting worse. But, I looked in the mirror yesterday and was

shocked to see this swelling again on my face that makes me look like my

mouth is frowning! Good grief!!! Obviously, the Prednisone went straight

to my moon face!! LOL!! Oh well, here we go again.

Hope all are well and feeling good this morning!

Lynn

[Guest guest]

Hi, Lynn, and welcome! This is a great group, and I think you'll find lots

of support and information.

You mentioned a fear of headaches with the MTX, I've been on the MTX for 9

weeks and am prone to headaches and have not had any increase in their

occurrence. I think someone mentioned that they feel that between MTX and

prednisone, the MTX is the lesser of the two evils. I would have to agree

with that. Prednisone makes me feel like an emotional wreck, but it sure

helps my joints. MTX just makes me a little queasy and tired when I first

take it. It's certainly a shame the side effects that we have to choose

between!

Have a great day!

Carol in FL

[ ] Hello!

Good Morning Everyone,

I was lurking for a while, and have decided pipe up! I'm Lynn, 52, live in

VA...have RA in my hands and now, rheumy suspects in my big toes. I also

have a rare muscle disease called dermatomyositis which affects my skin and

the proximal muscles. I have OA in neck, spine and knees.

I was started on 60mg. of Prednisone for the DM back in November and

decreased until I hit 10 mg. 3 weeks ago. I also take Plaquenil. I know

the mega dose of Pred. really did knock down my pain from the arthritis.

Boy, do I recognize myself in your messages! Such a moon face!! I was

embarrassed to go out and be seen in public or in a meeting at work. I have

short hair, so no help there. I, too, lost a lot of hair (had curly/frizzy

hair....once on Pred., I had a thin cap of straight, flat hair! Oy va!) I

let my hair grow long in the back to cover my camel's hump. Did any of you

get that dreadful lump of fat at the back of your neck? Mine is huge! And

yes, the fat redistributes itself to your upper trunk...so I got a lot of

" help " around my waist. Darn! I really didn't need the help. My rheumy

tells me the hair will grow back, but it lags 3 months or so, after the

Pred. taper.

But things are improving...I'm also hypothyroid, and switched from Synthroid

to Unithroid and have experienced improvement in hair growth already.

Can't do HRT cause I've had a second blood clot (one in each leg) and am on

coumadin for life! I do natural herbal remedies for my hotflashes. I also

have steroid induced glaucoma...so please be careful of your eyes on

Prednisone and Plaquenil.

My rheumy is talking about MTX because my disease flared again, she upped my

Pred. to 15 mg. for the next two weeks, but I seem to be getting worse.

I've been reading up on MTX and am not really happy...I'm wondering if it

will " enhance " the coumadin and maybe not be a good thing to take if one is

already on blood thinners. Anyone have any experience here? I have heard

you can get some pretty bad headaches.

So far, the increase in PRednisone has not helped with my rash from the DM,

in fact, I'm getting worse. But, I looked in the mirror yesterday and was

shocked to see this swelling again on my face that makes me look like my

mouth is frowning! Good grief!!! Obviously, the Prednisone went straight

to my moon face!! LOL!! Oh well, here we go again.

Hope all are well and feeling good this morning!

Lynn

[Guest guest]

,

Welcome to the group. My name is and i'm 32 yrs. old. I also was

born with bleph. My father had it and so does my grandfather. I also have

2 boys with it. My oldest son is finished with his surgeries and my

youngest had his first surgery on Aug. 29. How many surgeries have you had?

I had 2 as a child. My sons surgeon has been after me for about 9 yrs. to

let him do surgery again. I would love to have another one, just cosmetic,

but i've lived all this time like this and i really don't want to have

another surgery. I've had plenty of surgeries in my lifetime other than the

bleph. surgeries and just don't want to have another one if it's not

medically necessary. Again, welcome to the group.

[Guest guest]

Welcome Noelle!

I live in Warren. I have two boys. My younger son is 7 with autism/PDD/NOS. Glad to meet you. I am a director of TEAM To Find a Way. Our center is due to open in June in Trumbull County, come check us out! We are having a fundraiser at Alberini's on April 13th, Jazz nite! More information on the center and our org to come!

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

From: Noelle L. Drumm

Sent: 3/21/2006 11:53:32 AM

Subject: [ ] Hello!

Hi everyone! My name is Noelle.....I have a husband and 3 kids ages 12, 11, and 2. My 11 year old is dx'd with Asperger's (among other things). I live in a small town set between Youngstown and Warren, Ohio... in Trumbull County.

I'm quite involved in the mental health system in my county and hold 2 seats on County Boards, as well as chairing a committee at my son's school. My son recently (within the last 2 years) received his dx of asperger's, but we have suspected a spectrum diagnosis for years.

I look forward to meeting all of you!

Noelle

Do Not Go Where The Path May Lead, Go Instead Where There Is No Path and Leave A Trail.

~Ralph Waldo Emerson

[Guest guest]

Hi ! Isn't TEAM being somewhat promoted by Dr Vinci-Khoury? I believe I've heard her speak about this in previous seminars I've been at when she's been guest speaker......funny thing, she spoke at my son's school earlier about TEAM (and other things) this school year and brought a gal with her...was that you, by chance? Well, Warren is not far from me at all...I live in Mc! My son goes to school in Warren, so I'm in those neck of the woods some days during the week to pick him up and also to attend meetings for the seats I hold with the county when scheduled. My son, Forrest, has always displayed "autistic-like" qualities...I even took him for specialized testings at the world renown Merck Multiple Disabilities Autism Clinic in Pittsburgh at one time (he was age 5 then) for 6

months of evals and follow-ups. They felt he wasn't on the spectrum at all. So a 200 mile round trip once a week got me no closer to what I felt in my gut, even though he was attending Potential Development and Easter Seals for preschool at the time and thriving in those environment! Needless to say, it was years later...many dx's later...that we finally received the dx of asperger's. I'll mention again that my son is a multiple diagnosed, very complex child at times...and so the spectrum dx is just one of many he holds. I'd love to go to Alberini's just for the food (LOL)! I wish you much success with your fundraiser...where is your center going to be located? Can you share with me some more information about this organization? Again, I send best wishes! Thanks for the warm welcome ! Noelle "rmaher1969@..." <rmaher1969@...> wrote: Welcome Noelle! I live in Warren. I have two boys. My younger son is 7 with autism/PDD/NOS. Glad to meet you. I am a director of TEAM To Find a Way. Our center is due to open in June in Trumbull County, come check us out! We are having a fundraiser at Alberini's on April 13th, Jazz nite! More information on the center and our org to come! ----- Original Message ----- From: Noelle L. Drumm Sent: 3/21/2006 11:53:32 AM Subject: [ ] Hello! Hi everyone! My name is Noelle.....I have a husband and 3 kids ages 12, 11, and 2. My 11 year old is dx'd with Asperger's (among other things). I live in a small town set between Youngstown and Warren, Ohio... in Trumbull County. I'm quite involved in the mental health system in my county and hold 2 seats on County Boards, as well as chairing a committee at my son's school. My son recently (within the last 2 years) received his dx of asperger's,

but we have suspected a spectrum diagnosis for years. I look forward to meeting all of you! Noelle Do Not Go Where The Path May Lead, Go Instead Where There Is No Path and Leave A Trail. ~Ralph Waldo Emerson Do Not Go Where The Path May Lead, Go Instead Where There Is No Path and Leave A Trail. ~Ralph Waldo Emerson

[Guest guest]

Hi Trish,

Great to meet you, again! ;O) Anyway, thanks for that great letter about yourself and the school you work at. I am going to make a directory list of schools in the NE ohio area and that would be good to list yours there.

I'll work on the list soon.

In a message dated 5/7/06 2:36:39 PM Eastern Daylight Time, minniemimi1@... writes:

Hello!

My name is Trish , and I'm the grandmother of a wonderful little boy named Noah. He will be 5 on May 29th. He was dx with autism, shortly before his 3rd birthday. He is well on his way towards recovery, but as all of you know too well, it's a road that takes many directions.

[Guest guest]

Hi Trish! Welcome to the group! Sounds like you are one terrific grandma! All your grandkids are lucky to have you, but especially Noah. Too many grandparents either fade out or don't know what to do when it comes to grandchildren with special needs. It's great that you are there for him and his mom! I'm taking an evening class (final is tomorrow) and many of my classmates work at Broadmoor. One of them is Mike Conner. I hear good things about Broadmoor. I hope you find this list as helpful as the other lists you have found. There is a great group of parents here who are willing to help and support each other, and a couple of grandparents, too! Marotta----- Original Message ----- From: Trish Paolucci Sent: Sunday, May 07, 2006 2:36 PMSubject: [ ] Hello!Hello! My name is Trish , and I'm the grandmother of a wonderful little boy named Noah. He will be 5 on May 29th. He was dx with autism, shortly before his 3rd birthday. He is well on his way towards recovery, but as all of you know too well, it's a road that takes many directions. Noah has 3 sibs: Abbey, age 10, who is 7 and MacKenzie (Noah's partner in crime), age 3. I also have a 14 yr old grandaughter, Jordan, who lives in Dublin; a suburb of Columbus. That is my other home..... I commute between Euclid and Dublin, as I can't retire from my job yet, and my dh's business is there. I guess that makes me a week-end / summer wife, but it gives me the chance to be available to both my dd's and help out wherever they need me. With Noah, it's a lot! I work at Broadmoor School (Lake Co board MR/DD), with the greatest bunch of kids that you would ever want to meet. I've been in this field forever, it seems, but I never stop learning from the kids I have been blessed to work with. We have a great staff all of whom share the same work ethics. At school, I am on the autism committee which gives me an opportunity to help raise awareness, to learn and to share information with staff and parents on the subject of autism. Noah regressed into autism, shortly after receiving his flu shot. There may have been prior vaccine or environmental damage, but this is what threw him over the edge!!! It's a long story, and I recently wrote about it. When I get more familiar with this group and it's format, I will try to post it. At any rate, we are doing the DAN! protocol with Dr. DeMio (great guy!!!). We are doing vitamin and mineral supplementation, chelation with td-dmps, td-glutithione and the gf/cf diet. We began using LDN (low dose naltrexone) on Oct. 29th and have had phenominal gains! We just began using td-B12, so I really don't have any feedback on its effects yet. Noah has been attending school in a center based pre-school class (4 half days per week) for the past 2 years. Upon the recommendation of his Educational Team, he will be attending The Achievemant Center in Highland Hills, beginning with the summer camp program. There he will receive intensive speech, ot and other therapies that will hopefully, help bring him to level. He has lost most of his autistic-like behaviors, but still has speech and language deficits. He also has major problems with transitions and social skills. We have his IEP on Wed. I cannot say enough about the wonderful, caring staff that has worked within a tight budget and such a condensed schedule and still put forth every effort to bring Noah to the educational level that he is I am a member of the groups GFCFKids, chelatingkids2, and asd_solutions. I have learned so much from members of these wonderful groups. I am especially looking forward to being a part of this group, as we share the same home town...How 'bout those Cav's!!!???? -Trish

[Guest guest]

I’m glad you’re finally going

to a rheumatologist to get a firm diagnosis and effective treatment.

Feeling good now is a worthwhile objective but I think it’s even more

important to avoid permanent joint damage that can happen rather quickly if you

have untreated or undertreated RA. Also it usually takes at least a few

months to see if a treatment is working and sometimes we have to try several

before we find out what works for us. Let us know how the appointment

goes and what treatment you are on, and how you are doing with it. God

bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of lttledvl

Sent: Thursday, December 28, 2006

1:30 PM

Rheumatoid Arthritis

Subject:

Hello!

New to the group here, though not new to RA. My mother

has had it

since I was in high school and I began developing symptoms when I was

about 18.

I've just been 'sucking it up' in the past few years as it wasn't

really anything I couldn't deal with on my own, but it seems that the

pain this year has been worse than any others. So I finally got up the

nerve to ask the doc about it, and I ended up with a positive ANA

result.

I'm still waiting for the appt with the rhuemtologist. Hopefully, it

will occur soon.

Looking forward to talking to y'all,

Angel

[Guest guest]

Why out of network? What are your plans regarding insurance? $300 for an initial visit is quite a price. How long do you spend w/ the child and what exactly is included? Do you follow a treatment model? If you do, what is it?

We do not have state insurance, my insurance is through an employer. However as you well know that by going out of network you make sure that you don't have to deal w/ poor families/kids.

All providers at Kid Neurobehavioral Center are out-of-network medical service providers. This means that full payment will be due at the time of your appointment. You will be provided with a reimbursement form that you may submit to your insurance provider, per the guidelines of your individual policy. Please check with your insurance company for details regarding percent reimbursement for out-of-network services.

Pediatric Neurology services - Dr. Nevada

Follow up visit - $150 New patient visit - medical management review (previous diagnosis) - $300 New diagnostic patient visit - new diagnosis / second opinion and treatment planning - $450

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

From: Nevada

Sent: Saturday, June 30, 2007 7:46 PM

Subject: [ ] hello!

Hello to all!I am a new member of this chat group - thanks for allowing my participation. I am a pediatric neurologist specializing in the area of autism. I also have a 10 year old son who has high functioning autism, as well as two typically developing kiddos. Over the past 4 years, I have been the director of the autism program at Akron Childrens hospital. This September, I am opening a private practice called KidsLink Neurobehavioral Center in Twinsburg (www.kidslinkohio.com). I am lucky to be partnering with a terrific psychologist and SLP. We are working on including an OT and in-home behavioral intervention consultant.I learn about so many opportunities through similar chat groups, both for my use as a physician and a mom. I will look forward to the conversation on your group.Happy summer :->,Nevada

Need Mail bonding?Go to the Q & A for great tips from Answers users.

[Guest guest]

This is just my humble opinion, but no matter what the price, I don't

think you could ask for a better doc than Dr. . My youngest was

just not seeming like his normal self at all. We had taken him to

the ER (which, by the way, did not do all the tests our pediatrician

had called in and requested...the hospital will likely be hearing

from me on that yet again in light of recent circumstances), taken

him to the psych, changed meds -- nothing was helping. He seemed to

be getting worse mood-wise, sleep-wise, and was exhibiting strange

behaviors we had not seen before (head banging and slapping,

burrowing his head into blankets and pillows, grinding his teeth so

loud you could hear it from another room, etc.). At his most recent

annual check-up, I told his regular doc about all this. She

suggested we see Dr. . I called the office at Children's and

found she was leaving the practice, so they wouldn't let me see her.

Well, our pediatrician wanted us to see her because Dr.

specializes in Autism. This is important to us because sometimes

things are not what they seem in Autism. A friend of mine directed

me to Kids Neurobehavioral Center's website. I found a phone number

and called. It turned out, Dr. didn't think my son's situation

should wait until September. And what a correct call that was. He

had a sleep-deprived EEG on Friday, and lo and behold...he's having

seizures -- but they aren't what you would think of when you think of

a typical seizure. I thought so in my gut, and my gut was right.

Now, we can treat him and try and stop these before something really

bad would happen.

Many other places start out as self-pay too. For instance, when we

took our children to Whole Child Therapy in Stow last year, they

weren't on any insurances either. Now, they are. Originally, our

child psychiatrist was self-pay too. Now, she's an out-of-network

provider, but some of the amount is still paid by our insurance.

However, trying to find a decent child psychiatrist is about as easy

as nailing Jell-O to a tree. So, again, just my opinion, but

sometimes you do what you have to do. Just an idea, but our

pediatrician said she would be willing to order any tests that were

needed for our son if we did wait until September to see Dr. in

her new place -- that way, we would not have to worry about paying

for very expensive scans and the like out of pocket and wait to be

reimbursed.

Dr. is very thorough, and was really great to my very frightened

little boy. She has a wonderful bedside manner. To me, that's worth

any price of admission, because my poor son has been treated so badly

by so many medical " specialists, " ER docs, and lab techs. To have

someone who actually treated him well was worth everything. Her

staff has been very helpful in setting up all my son's tests as soon

as possible, and always invites me to call with any questions I

have. We're having a bit of a frightening time here...so, it's nice

to at least know I don't have to worry about my son being in the care

of the best doc possible. Again...just my humble opinion from

personal experience.

--Suzanne

>

> Why out of network? What are your plans regarding insurance? $300

for an initial visit is quite a price. How long do you spend w/ the

child and what exactly is included? Do you follow a treatment

model? If you do, what is it?

> We do not have state insurance, my insurance is through an

employer. However as you well know that by going out of network you

make sure that you don't have to deal w/ poor families/kids.

>

>

> All providers at Kid Neurobehavioral Center are out-of-network

medical service providers. This means that full payment will be due

at the time of your appointment. You will be provided with a

reimbursement form that you may submit to your insurance provider,

per the guidelines of your individual policy. Please check with your

insurance company for details regarding percent reimbursement for out-

of-network services.

>

> a.. Pediatric Neurology services - Dr. Nevada

> a.. Follow up visit - $150

> b.. New patient visit - medical management review (previous

diagnosis) - $300

> c.. New diagnostic patient visit - new diagnosis / second

opinion and treatment planning - $450

> ----- Original Message -----

> From: Nevada

>

> Sent: Saturday, June 30, 2007 7:46 PM

> Subject: [ ] hello!

>

>

> Hello to all!

> I am a new member of this chat group - thanks for allowing my

participation. I am a pediatric neurologist specializing in the area

of autism. I also have a 10 year old son who has high functioning

autism, as well as two typically developing kiddos. Over the past 4

years, I have been the director of the autism program at Akron

Childrens hospital. This September, I am opening a private practice

called KidsLink Neurobehavioral Center in Twinsburg

(www.kidslinkohio.com). I am lucky to be partnering with a terrific

psychologist and SLP. We are working on including an OT and in-home

behavioral intervention consultant.

> I learn about so many opportunities through similar chat groups,

both for my use as a physician and a mom. I will look forward to the

conversation on your group.

> Happy summer :->,

> Nevada

>

>

>

>

> --------------------------------------------------------------------

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[Guest guest]

Hi Nevada and welcome to the group.

I just want to say that I appreciate the fact that you

are not only a Ped. Neurologist, but a mom who has

been there, done that and still is....

My grandson no longer sees a Neurologist because the

one we were referred to, unfortunately could not

relate to what we were doing biomedically. Displayed

in his office are several poster sized pictures of his

very beautiful, NT son. I am not begrudging him this

opportunity to share his own miracle with his patients

and their families. But his resistance to alternate

approaches to helping our children, leads me to

believe that, although extermely intellegent, kind and

compassionate....when it comes to the reality of

autism, he really doesn't have a clue!!!!

I had mentioned to him from the get go, that we were

beginning biomedical treatment, and we had just

started with EFA's. His response was " yeah,

supplements...some people use them. " As he shrugged

his shoulders, he continued " I suppose they can't

hurt. "

Ten months and two visits later, he was amazed at

Noah's progress, and asked me to tell him more about

" this biomedical treatment " . For the remaining 25

minutes, I sat there and educated him, giving him our

DAN! Dr's phone number. He said he was interested and

would call him. Encouraged, we went our merry way

(btw, my dd's insurance didn't cover that visit, so it

cost us 110.00). Later, I ran into a mom who also took

her son there, but had set up an appt. with the same

DAN! Doc. When she mentioned this to him, his reponse

was flippant. He said " Don't waste your money, it

doesn't work. You're better off taking your family on

a nice vacation! " VACATION???? HAS HE EVER TRIED

TAKING AN AUTISTIC CHILD TO A RESTAURANT????

Next, I talked to our DAN! Dr. I asked him if this

person had spoken to him, and he said yes, they had a

nice conversation. He said they had spoken for half an

hour and the Dr. was quite interested in the

information he had given him. He added that he wasn't

sure if was on board with the concept of biomedical,

but that he appreciated the fact that he took the time

to try to understand it.

Well, judging from the feedback from this other mom,

nothing he said could have been further from the

truth. We cancelled our following

appointment..permanently. This is my personal

experience. I work in a school where many of our

children and adults are treated by this particular

Neurologist, very successfully. I will not say

anything to discourage the parents of these children

in any way.

There is another Cleveland area Neurologist whom I

believe is serving as a witness for the government in

the Vaccine Hearings. I mean no disrespect to the

individuals whom I refer to. They have a right to

their opinions and they have helped many people. But

by " putting down " parents who wish to seek biomedical

treatments, they are doing them a true disservice.

Needless to say, I am thrilled to have you on board.

No matter what your personal opinions may be, you are

obviously open to the various treatment options that

are available. As a parent of a child on the

spectrum, you live autism on a daily basis. You know

the love and joy that these kids bring to us...the

laughs, the tears, the accomplishments and the

disappointments. As with your NT children, there are

many...but when a child has autism, most ups and downs

are more difficult to deal with. You know what it

feels like to go to bed at night with an aching

heart...it goes with the terratory. You also know how

it feels to get excited when your child does things

that other parents take for granted!!!!

Sorry for the long post, but I want you to know that

by joining this group, you will be helping more people

than you realize! I am looking forward to your

input...both as a Neurologist and as a mom!!!

-Trish

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[Guest guest]

Hello again to all!

Thank you for asking about our groups decision to start as

out-of-network insurance providers. I hope this discussion will spur

everyone to support legislation for mental health parity!!

One of the main reasons that I decided to open a private practice

instead of remaining as a hospital employee is that I was being asked

to shorten my patient visit times, again and again. This is because

the reimbursement for " behavioral " and " mental health " and

" developmental " diagnoses (where insurance considers autism) is DEEPLY

discounted by health plans. Because of this, our large hospital

department of neurologists and developmental peds ended the year in

debt!! So, we are asked to accomodate patients faster and faster.

I feel like time with children and families is paramount to their

treatment, so I was having a harder and harder time with this. If I

become paneled as an in-network provider, this will mean that I am

agreeing to whatever discounts that insurance provider applies to a

particular diagnosis - when on panel, you may choose your own fees,

but are only paid at their discounted rate.

Our fee schedule is actually slightly less than the fee schedule at my

current and other local hospitals for the same services (note, that

they aren't reimbursed at those rates because of insurance discounts).

For our current fees, families will be re-imbursed by their insurance

depending on their plan (most insurances are 70% for out-of-network

patients). This will mean a greater cost to families (ie. about $90

actual cost with a 70% plan for a new appt, instead of traditional $20

co-pays), however, it will retain the time frame of the appointment.

My initial new appts for already diagnosed kids are between 1 and

1-1/2 hours. For a new diagnosis, this would be about 2 hours and

would include some extra testing (ie ADOS) which has an insurance code

to provide additional reimbursement to the family. I am not a DAN

doctor but I am open to discussing complementary therapy with

families. I am a traditionally trained pediatric neurologist and

provide neurologic care (medications, evaluation, suggestions on

behavioral intervention, monitoring of neurologic symptoms).

As a parent of a child with autism, I know that evaluating where to

spend intervention dollars is a very difficult one. I also know that

with this model, I am not able to help every child with autism. I

hope the economic realities of medical care start to change soon!

Our charges for psychology and speech therapy services seem to be

consistent with other local service providers. We are also applying

to be an Autism scholarship site.

I appreciate all input you all might have regarding how I can make

services easier to access for families (ie should I have a payment

plan option?) and about what services you all see as needed in the area.

Again, I feel lucky that there are strong parent groups here in town,

and I appreciate your allowing me to be part of this chat group to

learn all I can about resources that might be helpful to my patients,

or if I can help with medical questions for you all.

Happy 4th of July!

Nevada

[Guest guest]

Hello Kim. welcome. I have a daughter 11 and son 6 1/2. My son Aedan has Blepharophimosis and has had 4 surgeries. One for ptosis when he was just 10 weeks which was successful and 3 others from his ophthalmologist that I believe were not at all successful. I too concentrate on enjoying he and my daughter everyday. Anyway welcome.

In a message dated 12/12/2008 3:55:10 A.M. Eastern Standard Time, kimishoea@... writes:

Hi, everyone! My name is Kim and my almost 12 week old baby boy, Kale,was diagnosed with Bilateral Microphthalmia and Blepharophimosis andis blind. I'm thankful to have found support groups for both. Kale doesn't see an ophthalmologist until March, so I don't know whattypes of treatment will be available to him. He seems to have a severecase from what I can tell when comparing his pictures to that ofeveryone's beautiful children (feel free to check out my littlebutterball, I just created an album). The thought of surgery scaresthe bejeezus outta me, that's for sure. Right now we're just enjoyingour time with our newest edition to our family and looking forward toany type of advice or support anyone can give us. Anyway, just wanted to stop in and say hello. Kim Wife to Mike, mother to 4 1/2 y.o. daughter, Maile and 11 w.o. son, Kale

[Guest guest]

Your baby is beautiful. Good luck with the Dr appt. Surgery scared me

too, but it is all for the better. God Bless

>

> Hi, everyone! My name is Kim and my almost 12 week old baby boy, Kale,

> was diagnosed with Bilateral Microphthalmia and Blepharophimosis and

> is blind. I'm thankful to have found support groups for both.

> Kale doesn't see an ophthalmologist until March, so I don't know what

> types of treatment will be available to him. He seems to have a severe

> case from what I can tell when comparing his pictures to that of

> everyone's beautiful children (feel free to check out my little

> butterball, I just created an album). The thought of surgery scares

> the bejeezus outta me, that's for sure. Right now we're just enjoying

> our time with our newest edition to our family and looking forward to

> any type of advice or support anyone can give us.

> Anyway, just wanted to stop in and say hello.

>

> Kim

> Wife to Mike, mother to 4 1/2 y.o. daughter, Maile and 11 w.o. son,

Kale

>

[Guest guest]

HI Kim

Welcome the site. I am so happy you have found support groups. Both

your children are adorable!!! I have Bleph and so does my 11mth old

daughter. It is difficult when you don't expect any problems and then

your child is born with different features, my heart goes out to you.

I'm sure what ever decision you make regarding surgery will be the

right one.

Kind regards

(australia)

>

> Hi, everyone! My name is Kim and my almost 12 week old baby boy, Kale,

> was diagnosed with Bilateral Microphthalmia and Blepharophimosis and

> is blind. I'm thankful to have found support groups for both.

> Kale doesn't see an ophthalmologist until March, so I don't know what

> types of treatment will be available to him. He seems to have a severe

> case from what I can tell when comparing his pictures to that of

> everyone's beautiful children (feel free to check out my little

> butterball, I just created an album). The thought of surgery scares

> the bejeezus outta me, that's for sure. Right now we're just enjoying

> our time with our newest edition to our family and looking forward to

> any type of advice or support anyone can give us.

> Anyway, just wanted to stop in and say hello.

>

> Kim

> Wife to Mike, mother to 4 1/2 y.o. daughter, Maile and 11 w.o. son,

Kale

>

[Guest guest]

Hi Kim,Welcome to the group.Its a wonderful place to find info and support etc.You must be feeling very overwhelmed at the moment? You little boy is beautiful.Hang in there as with time, comes understanding and we seem to learn more and more as time goes along.Love to you and your family,Machaela (australia) xxFrom: Kim <kimishoea@...>Subject: blepharophimosis Hello!blepharophimosis Received: Friday, 12 December, 2008, 3:56 PM

Hi, everyone! My name is Kim and my almost 12 week old baby boy, Kale,

was diagnosed with Bilateral Microphthalmia and Blepharophimosis and

is blind. I'm thankful to have found support groups for both.

Kale doesn't see an ophthalmologist until March, so I don't know what

types of treatment will be available to him. He seems to have a severe

case from what I can tell when comparing his pictures to that of

everyone's beautiful children (feel free to check out my little

butterball, I just created an album). The thought of surgery scares

the bejeezus outta me, that's for sure. Right now we're just enjoying

our time with our newest edition to our family and looking forward to

any type of advice or support anyone can give us.

Anyway, just wanted to stop in and say hello.

Kim

Wife to Mike, mother to 4 1/2 y.o. daughter, Maile and 11 w.o. son, Kale

Start your day with 7 and win a Sony Bravia TV. Enter now.

[Guest guest]

Hello!

I bought a Canon digital camera at a online shop(ktpshop.com),and now I have

received it,I find it realy has good quality and reasonable price,some webs

like " google " " " are now promoting their company,and now their company are

having a big promotion for customers,all the products are having a price

reduction,wish you not to miss it!Thanks!

Sharp LC42XL2E 42 in. LCD TV (Price:399.00eur)

Apple MB604LLA 17 (Price:480.00eur)

ASUS Eee PC 1000H 10-Inch Netbook (Price:138.00eur)

Nokia 8800 Carbon Arte (Price:280.00eur)

Canon EOS 40D Digital SLR Camera (Price:360.00eur)

SONY PLAYSTATION 3 40GB (Price:196.00eur)

Please forgive my sending this mail if you so not like it,thanks!

[Guest guest]

I suspect this is spam from a virus which infected her email

account, not a message she actually sent herself.

From:

[mailto: ] On

Behalf Of driley99

Sent: Sunday, April 11, 2010 7:24 PM

Subject: RE: [ ] Hello!

And this

is related to CD how?

From:

[mailto: ] On Behalf Of Luttrell

Sent: Sunday, April 11, 2010 12:27 PM

Paola Aliverti

Subject: [ ] Hello!

Hello!

I bought a Canon digital camera at a online shop(ktpshop.com),and now I have

received it,I find it realy has good quality and reasonable price,some webs

like " google " " " are now promoting their company,and now

their company are having a big promotion for customers,all the products are

having a price reduction,wish you not to miss it!Thanks!

Sharp LC42XL2E 42 in. LCD TV (Price:399.00eur)

Apple MB604LLA 17 (Price:480.00eur)

ASUS Eee PC 1000H 10-Inch Netbook (Price:138.00eur)

Nokia 8800 Carbon Arte (Price:280.00eur)

Canon EOS 40D Digital SLR Camera (Price:360.00eur)

SONY PLAYSTATION 3 40GB (Price:196.00eur)

Please forgive my sending this mail if you so not like it,thanks!

[Guest guest]

Please only Celiac related info to this group!

Thanks.Melis B----- " Luttrell" <stephanieluttrell@...> wrote: >

> > > Hello!> I bought a Canon digital camera at a online shop(ktpshop.com),and now I have received it,I find it realy has good quality and reasonable price,some webs like"google""" are now promoting their company,and now their company are having a big promotion for customers,all the products are having a price reduction,wish you not to miss it!Thanks!> Sharp LC42XL2E 42 in. LCD TV (Price:399.00eur)> Apple MB604LLA 17 (Price:480.00eur)> ASUS Eee PC 1000H 10-Inch Netbook (Price:138.00eur)> Nokia 8800 Carbon Arte (Price:280.00eur)> Canon EOS 40D Digital SLR Camera (Price:360.00eur)> SONY PLAYSTATION 3 40GB (Price:196.00eur)> Please forgive my sending this mail if you so not like it,thanks!>

>