new to group...

[Guest guest]

Drinking lots of water really helps. Also, many meals go down " smoother "

when you are relaxed and not worried about eating the food. I had the

Heller's myotomy Oct 24, 1999 and it saved my life. I had reached a point

where no matter how much water or how " relaxed " I was I still regurgitated

the food. Dilations worked better than Botox on me but it kept coming back.

At that point, I didn't care how difficult the surgery would be - I was going

through it. The diagnostic tests aren't that bad. They are necessary to

measure the pressure inside before surgery. Wishing you GOOD LUCK! Elena

[Guest guest]

Hello ,

Welcome to the group. Thanks for posting. I'd be interested in

hearing what results you had from the various treatments in

particular

- did you have temporary success at all?

I wish we could spur on the medical community to look at treating the

cause rather than just the swallowing symptom - something is making

this occur and treating that something would seem to be key.

-

(diagnosed at age 30 about 6 months ago)

> Hello,

>

> I am new to this group. I am (unfortunately) an old hand at

> achalasia, I have had it most of my life (I'm nearly 40). I saw a

> new specialist yesterday who recommended I try the Internet to keep

> up on new developments in the treatment.

>

> I have had nearly every treatment possible; (dilatations, myotomys,

> botox), but it always comes back. People I know tell me things

> like, " I wish I had your problem, you never have to diet " -- to

them

> I say " think again " . I have learned to cope with achalasia - most

of

> the time - although it can be surprising at how insensitive some

> people can be. I don't enjoy dining out, or having other people

> comment on how slow I eat.

>

> I do have a few tricks, most learned from my surgeon in Seattle, a

> glass of room temperature water with meals helps, as well as eating

> frequent,small meals and allowing LOTS of time.

>

> Anyway, it was encouraging to find out there are others who endure

> this problem, I have always felt like I was the only one. Maybe

> someday a cure will be found!

>

>

[Guest guest]

Hi, !

Welcome to the group. It's disheartening to read that you've undergone so

many treatments over the years and still have no permanent solution. Coping

with it at this point is about all you can do, unfortunately. As you stay

posted to this group, you'll probably learn some more tricks to use in

dealing with it. My personal favorite was the discovery of Cola Syrup, an

old-fashioned remedy for simple nausea that my mother used to give me as a

child when I had an upset stomach. I've always kept a bottle in the house

as I absolutely hate feeling nauseated! After a particularly bad weekend in

which I regurgitated everything I put in my mouth, including my own saliva,

my throat was so raw from all I had put it through that I desperately wanted

something to soothe it. Not having regular cough syrup in the house, I used

the cola syrup instead. It immediately released the intense chest spasm I

was also experiencing (a symptom of vigorous achalasia). Soon after I found

that a swallow of Cola Syrup would help dislodge food that was having

difficulty " going down " and I rarely had to regurgitate anything I'd eaten.

No one knows why this works - my doctors dismiss it without much discussion

and my pharmacist is perplexed - but it does work for me. If you're

interested in trying it, Cola Syrup is usually found over the counter in the

drugstore with other stomach medications like Pepto Bismal, etc. However,

some pharmacies keep it behind the counter and all you have to do is ask for

it - it does not require a prescription.

Good luck - take care!

Carol

New to group...

> Hello,

>

> I am new to this group. I am (unfortunately) an old hand at

> achalasia, I have had it most of my life (I'm nearly 40). I saw a

> new specialist yesterday who recommended I try the Internet to keep

> up on new developments in the treatment.

>

> I have had nearly every treatment possible; (dilatations, myotomys,

> botox), but it always comes back. People I know tell me things

> like, " I wish I had your problem, you never have to diet " -- to them

> I say " think again " . I have learned to cope with achalasia - most of

> the time - although it can be surprising at how insensitive some

> people can be. I don't enjoy dining out, or having other people

> comment on how slow I eat.

>

> I do have a few tricks, most learned from my surgeon in Seattle, a

> glass of room temperature water with meals helps, as well as eating

> frequent,small meals and allowing LOTS of time.

>

> Anyway, it was encouraging to find out there are others who endure

> this problem, I have always felt like I was the only one. Maybe

> someday a cure will be found!

>

>

>

>

>

>

>

>

>

>

____________NetZero Free Internet Access and Email_________

Download Now http://www.netzero.net/download/index.html

Request a CDROM 1-800-333-3633

___________________________________________________________

[Guest guest]

Hi , I'm glad you found us. Have you had any antibody testing done

yet?

I'm not a big fan of the thyroid scan and uptake test... I don't think it's

really useful to anyone, unless you are going to have the radioactive iodine

treatment to kill your thyroid - then it tells the doctor how much

radioactive material to use. But I'm not a big fan of that option either!

Proper blood tests, including antibodies and an ultrasound should be all the

info your doctor needs to diagnose and treat.

This link is really good at giving you a quick overview of the disease and

your options: http://www.bbc.co.uk/dna/h2g2/A688241

Please take your time making any permanent decision and learn everything you

can first. I have lots of good links on my website:

http://www.webmosaics.com/thyroid/

Let us know when you have questions!

:)Pam B.

[Guest guest]

Hi ,

And welcome, also!

I just underwent a complete hysterectomy, due to an ovarian cyst which I had been told was probably cancerous. I am much older than you, however - 58. But this diagnosis came within one year of my diagnosis of Graves' disease. Interestingly, they are both the endocrine system. I am NOT an expert on this, by any means. But my older sister, who also had Graves' when she was 38, had two ovarian cysts within one year of her diagnosis of Graves' also. Both she and I feel there is some connection between the two things.

When preparing for my surgery, I did find a site for ovarian cysts (sorry, I didn't save it) which spoke about how a cyst can actually cause hyperthyroid. When I spoke with my OB/GYN about this, (since I will be seeing my endo this month, and he knows nothing about my surgery) he said I had no thyroid cells in my cyst, and therefore it was not related at all. However, my experiences with physicians is that they don't know everything, and I still feel that there is some connection between the two things for some of us.

Hope you find all the information you are searching for, and there are no dumb questions!

Arlene

New to group...

Hi, I am new to the group and new to hyperthyroidism. I was diagnosed about two weeks ago. I am 21. I also have Endometriosis and PCOS. I was wondering if anyone else has these same conditions all at the same time. Also, I was supposed to have surgery about two weeks ago. The procedure involved removal of endo, removal of cysts, lysis of adhesions, presacral neurectomy, and hernia repair. However, the surgery had to be cancelled when they discovered that I have Grave's. I was very discouraged and never got a true explanation of why the surgery had to be postponed. My Endochrinologist said that she wanted to "get my thyroid under control" before any anesthesia or surgery. Is it b/c of irregular heart rhythms? Someone suggested b/c of high blood pressure due to Grave's, but I have very low BP. Also, (Sorry this is so long.) I was wondering how long before the meds or iodine, or whatever, are able to get my levels back to normal. My Endoc said that she'd like to watch me for at least a month before letting me have surgery. Will it be safe to undergo anesthesia in a month? My surgery has been rescheduled for Sept. 4th. I go for a thyroid scan tomorrow, but I have not started any kind of treatment. Sorry if these are dumb questions! I am new to this and I'm having a rough time. I was supposed to do my student teaching this Fall (everything was scheduled), and b/c of my health and surgery, I have to wait unitl the Spring. I'm also supposed to be getting married in Dec. I really want to get "healthy" before making any huge changes. Thanks for your time (I know this is long!).

[Guest guest]

One thing we've done with our daughter to lessen her noise sensitivity (she

is also above average re: hearing) is to put her thru AET (Audio

Enhnacement Therapy -- it used to be called Audio Integration Therapy or

AIT so you may want to search on that, too). The way it's conducted here

involves a pretty big committment because there are 2 thirty minutes

sessions a day (one a.m. and one p.m.) for 10 days (2weeks in a row with

the weekends off).

We've seen more eye contact, improved focus, and the ability to tolerate

more noise. In fact, she actually now goes to and enjoys parades with all

the fire engines, marching bands, etc. The only down side other than the

time committment is that the improvements wear off and it's recommended

that you do it every year. We've done it for the last 3 years because

there's a facility near us that does it by an angency that covers the cost.

Joy Insinna

Director

Office: (585) 240-7483

Fax: (585) 295-4890

Element K

'the knowledge catalyst'

www.elementk.com

" jpearson372 "

<jpearson372@yaho

Autism_in_Girls

o.com> cc: (bcc: Joy

Insinna/Content/Element K)

Fax to:

11/21/02 01:29 PM Subject: New

to group...

Please respond to

Autism_in_Girls

Hello,

My name is and I am the mother of four children, 6yrs,

4yrs, 3yrs and 2 mos. My four year old daughter has been diagnosed

with PDD-NOS. I am new to this board and I would like to be able to

share a little bit about my daughter.

My daughter was diagnosed at the age of three as having ASD.

We immediately implemented the GF/CF diet after her diagnosis and

started her in private speech and special ed preschool. When she

went in for her Psych evaluation at 3 years 6 months, they told us

she was classified as PDD-NOS. has receptive/expressive

language delays...where her receptive language is further delayed

than her expressive language. has a lot of sensory issues and

has been doing private O.T. for about 4 months now. She also has

high sensitivity to hearing, as she can hear things before we can

and it seems she can also hear things we cannot. She typically does

better in a quiet settings in one on one situations rather than

large groups. She cannot seem to concentrate when noise levels tend

to increase and this would include noises inside of and outside of

the small groups as it appears she hears noises in close and mid-

range at about the same level. We've done a lot of testing through

our hearing and speech center with this..but I am not sure what can

be done for it yet. also gets physical therapy through her

preschool and she is getting ready to start ABA therapy at the

house.

Over all, we've been seeing a lot of changes with her and in the

last year or so the improvements have been considerable, although I

know we have a lot of work ahead of us. For instance, she potty

trained over the summer but will have nothing to do with it now. She

was wearing pull ups at the time and continues to do so but because

of sensory issues, she will not put on underwear...the texture or

feel of them really bothers her. She also has an attachment to the

bottle...but will only want it when she loses her concentration due

to noise levels...it somewhat helps her refocus. Other than that

she doesn't want it at all.

If anyone has ideas or thoughts, I am eager to hear from you. Take

care and God Bless,

[Guest guest]

Hi

Welcome to the list! My name is Tracey and I have two daughters our

oldest Coral (nt) is 12 and our youngest Skylar is 10 and was diagnosed

as autistic at the age of 3. Skylar, like your daughter, has extremely

sensitive hearing. The sounds of a large crowd bothers her, she will

plug her ears. She also cannot stand the sound of our organ at our

church. She seems to be sensitive to things we cannot even hear

sometimes. Some days she copes better than others. She does prefer a

quiet setting to do her school work as opposed to a loud class. We are

very lucky as this year her class is relatively quiet. This is a great

list. The people on here are full of ideas and support. I am sure you

will be glad you joined.

Tracey

jpearson372 wrote:

> Hello,

>

> My name is and I am the mother of four children, 6yrs,

> 4yrs, 3yrs and 2 mos. My four year old daughter has been diagnosed

> with PDD-NOS. I am new to this board and I would like to be able to

> share a little bit about my daughter.

>

> My daughter was diagnosed at the age of three as having ASD.

> We immediately implemented the GF/CF diet after her diagnosis and

> started her in private speech and special ed preschool. When she

> went in for her Psych evaluation at 3 years 6 months, they told us

> she was classified as PDD-NOS. has receptive/expressive

> language delays...where her receptive language is further delayed

> than her expressive language. has a lot of sensory issues and

> has been doing private O.T. for about 4 months now. She also has

> high sensitivity to hearing, as she can hear things before we can

> and it seems she can also hear things we cannot. She typically does

> better in a quiet settings in one on one situations rather than

> large groups. She cannot seem to concentrate when noise levels tend

> to increase and this would include noises inside of and outside of

> the small groups as it appears she hears noises in close and mid-

> range at about the same level. We've done a lot of testing through

> our hearing and speech center with this..but I am not sure what can

> be done for it yet. also gets physical therapy through her

> preschool and she is getting ready to start ABA therapy at the

> house.

> Over all, we've been seeing a lot of changes with her and in the

> last year or so the improvements have been considerable, although I

> know we have a lot of work ahead of us. For instance, she potty

> trained over the summer but will have nothing to do with it now. She

> was wearing pull ups at the time and continues to do so but because

> of sensory issues, she will not put on underwear...the texture or

> feel of them really bothers her. She also has an attachment to the

> bottle...but will only want it when she loses her concentration due

> to noise levels...it somewhat helps her refocus. Other than that

> she doesn't want it at all.

> If anyone has ideas or thoughts, I am eager to hear from you. Take

> care and God Bless,

>

>

>

>

[Guest guest]

Hi Keisha!

Nice to have ya!

Lucinda

Glenbrook Farms Herbs and Such

Bulk Herbs, Spices,fine teas,essential oils and More!

http://www.glenbrookfarm.com/herbs

New to group...

Hello,

I am new to the group and I wanted to introduce myself. My name is

Keisha and I handcraft all-natural body products and custom gift

baskets. I look foward to sharing and recieving info. from this

group....

Keisha

http://basketsfulloflove.com

Christmas in July Sale ! Many bulks herbs at the lowest prices this year.

These offers will not last long!We have many hard to find items like citric

acid,empty capsules,red clay,best priced essential oils and more!

http://glenbrookfarm.com/store/specialsseeds_1.html

To unsub send an e-mail to :

-unsubscribe

Enjoy daily tips on herbal remedies, nutrition,exercise, concentration

boosters, stress relievers, aroma therapy, spiritual food , folk medicine,

and tips on creating more JOY in your life. send a blank e-mail to subscribe

:

subscribevhtips@...

[Guest guest]

> Hello,

>

> I am new to the group and I wanted to introduce myself. My name is

> Keisha and I handcraft all-natural body products and custom gift

> baskets. I look foward to sharing and recieving info. from this

> group....

>

> Keisha

> http://basketsfulloflove.com<

Can you please tell me where you can find a " natural " melt & pour

soap base? I have never seen one that didn't contain artificial.

synthetic or refined and processed ingredients! Thanks,

[Guest guest]

I am brand new to this group too I'm a 39 year old man with a wonderful wife and

two daughters 17 and 18 my youngest is married and I have a new granddaughter

born on 9/5/2003

I didn't realize there were mostly men here but i for one welcome you i wish you

had better pain relief from your stimulator I just got home from the hospital

from having my permanent stimulator implanted so i'm not sure if the relief i

have now will last but it's helping me a lot right now

If you don't mind me asking what model of stimulator are you using. I have the

ANS radio frequency system with external batteries but I'm curious about the

other stimulators being used.

I hope you can find some relief from your sciatica I've had sciatic pain for

years and I know it can really get bad at times especially if you stretch the

nerves running through your butt sometimes a deep tissue massage can help I have

my wife push really hard on the sciatic nerve running through my butt on

whichever side the pain is on she holds pressure on it for 10 to 15 minutes I

don't know if that will help you but it tends to settle my sciatica down for a

while

Hugs and Prayers Leo

New to group...

I also have a spinal cord stimulator... Mine gives me relief,in

both legs. Tried to get it to give relief in lower back also,but NO

luck. I also have a Intrathecal Pain pump. Hope I am welcome too.

Looks like mostly men here. Am I right there? Regardleass,I have

been dealing with horrible left leg pain lately,which NOTHING helps.

I feel like it is probably sciatica. Goes from top of thigh all the

way down to left foot. Pain is really horrible! Waiting to get a date

for an injection for that,which Pain dr. says may ease it some.

Otherwise I don't know what will help it. Also waiting to get the

catheter, for my pain pump,re-implanted. That slipped out a few

months back,and ended up with a spinal leak,that needed surgery. Also

was infected too. Was inpatient & on IV ABX for a week. Am looking

forward to get back on the pump. Nice to meet you all. Hope to get to

know you all better!

I am also 45,married with 2 children... A boy 13,and girl who

will be 10 in Dec. Been married 14 years.

Have a great day! D.Ann

[Guest guest]

Doctor, are you aware of the work of the late Dr. Broda ? He found that the basal temp taken under the arm pit was the most reliable of all the tests. Free T3/T4 and the others are not as reliable and often don't detect the condition when it is present. Dr. wrote a book on the topic.

http://www.alternate-health.com/thyroid.html

-- New To Group...

Hi

I am new to this group and find it fascinating and a great learning experience. I have not had a chance to read all of the files, but plan on doing this sometime this week.

I did want to post the URLs to two articles at Life Extension one of which was in my email this morning. The last article lists symptoms of too much potassium iodide. Most of you probably already know the information contained in the articles, but just in case, for those searching for some answers these articles may help.

Thyroid Deficiency

Thyroid Deficiency - Updated

I am also interested in the application of Lugol’s to the skin and if there are certain areas to paint it on. Exactly what are the directions. Also, I read, several months back, that determining thyroid function from the “skin test” was not accurate because of quick evaporation, etc. Could someone point me to an article or research where this is refuted, as in this is a good way to test for thyroid deficiency?

Have a great weekend!

Be Well,Loretta

[Guest guest]

Hi

Yes, and becoming more and more familiar,

hopefully. )

What I am really interested in are those that have had success using Lugols on

the skin and also orally. I have always gone by symptoms when dealing with

thyroid issues. I do a lot of work

with hormonal imbalances of with the thyroid is of up-most importance. While I usually require blood work in

this area, I have found that symptoms are much more important. I find this also true when dealing with

hormone imbalance, particularly estrogen dominance and rely on saliva testing

and symptoms.

Basically, I want to learn what people

with experience in using Lugols, etc. are observing in treating their thyroid

conditions. I am of the opinion

that when dealing with any endocrine issues that there are many pieces to the

puzzle including healthy diet (not what most consider healthy), stress and

negative emotions, hormone levels, water consumption, salt intake, etc.

Thanks for your help!

Be Well,

Loretta

From: iodine [mailto:iodine ] On Behalf Of comdyne@...

Sent: Saturday, April 22, 2006

10:28 AM

iodine

Subject: Re: New To

Group...

Doctor,

are you aware of the work of the late Dr. Broda ? He found that

the basal temp taken under the arm pit was the most reliable of all the

tests. Free T3/T4 and the others are not as reliable and often don't detect

the condition when it is present. Dr. wrote a book on the topic.

http://www.alternate-health.com/thyroid.html

[Guest guest]

Welcome to the group, Loretta! We're glad you joined us in exploring Iodine!

Thanks for the links to life extension. I've added the link to info on symptoms of too much KI here:

Links > 11 Iodine Sources > 30 Contraindications, Precautions, Adverse Reactions

iodine/links/Iodine_Sources_001138151092/Signs_of_Too_Much_Io_001138752483/

There is a discussion of the Patch Test in the Iodine Basics section. So far, we know of no good research on the Patch Test. We do not yet know how much validity (if any) it has. We are collecting our own data of personal experiences in the database section in the Table called "Patch Test Results" to determine whether it is useful in practice. We are asking everyone who has tried the patch test (or a variant of it) to post their experience here.

iodine/database?method=reportRows & tbl=3

Zoe

Moderator

I am new to this group and find it fascinating and a great learning experience. I have not had a chance to read all of the files, but plan on doing this sometime this week.

I did want to post the URLs to two articles at Life Extension one of which was in my email this morning. The last article lists symptoms of too much potassium iodide. Most of you probably already know the information contained in the articles, but just in case, for those searching for some answers these articles may help.

Thyroid Deficiency

Thyroid Deficiency - Updated

I am also interested in the application of Lugol’s to the skin and if there are certain areas to paint it on. Exactly what are the directions. Also, I read, several months back, that determining thyroid function from the “skin test” was not accurate because of quick evaporation, etc. Could someone point me to an article or research where this is refuted, as in this is a good way to test for thyroid deficiency?

Have a great weekend!

Be Well,Loretta

[Guest guest]

Loretta, what I CAN tell you is that I've had miserable estrogen

dominance off and on since Dec. of 2004--thought I got rid of it

with progesterone gel in 2005....until it returned with a vengeance

more than 2 months ago. I started on Betadine--I think only one

drop. Got my Lugol's within the week after the Betadine, and started

on one drop per breast. Did absolutely NOTHING. Moved up to 2 drops

per breast almost a week ago--nothing. That's about 25 mg iodine. I

am moving up to 3-4 drops per breast to see. Janie

> What I am really interested in are those that have had success

using Lugols

> on the skin and also orally. I have always gone by symptoms when

dealing

> with thyroid issues. I do a lot of work with hormonal imbalances

of with

> the thyroid is of up-most importance. While I usually require

blood work in

> this area, I have found that symptoms are much more important. I

find this

> also true when dealing with hormone imbalance, particularly

estrogen

> dominance and rely on saliva testing and symptoms.

> Basically, I want to learn what people with experience in using

Lugols, etc.

> are observing in treating their thyroid conditions. I am of the

opinion

> that when dealing with any endocrine issues that there are many

pieces to

> the puzzle including healthy diet (not what most consider

healthy), stress

> and negative emotions, hormone levels, water consumption, salt

intake, etc.

> Thanks for your help!

> Be Well,

> Loretta

[Guest guest]

Hello and welcome! I am new too!

>

> i've been lurking for a week or two now and decided to say hello.

> my name is michele, my 15 year old daughter has been just

recently dx'ed with aspergers syndrom, although i've " known " for a

while...or atleast suspected. she was dx'ed with sensory intergration

disorder several years ago and even then i knew the dx wasn't exactly

correct, although it worked at the time. i've always known this child

was different. she is second in the birth order of 4 kids, three

girls and then the boy. she cried 24/7 from the day she was born

until she was 2. we had a horrible time potty training and she wasn't

fully trained until she was atleast almost 5.

>

> she has been to school for pre-k through 2nd grade, homeschooled

until the middle of 7th grade. from the middle of 7th until the

middle of 9th grade she went to public school. 9th grade was a HUGE

disaster, as the principal insisted she had oppositional defiant

disorder. she totally did not " get " my daughter. and exposing my

daughter to this woman is probably my biggerst regret in regards to

my daughter. that and waiting so long for this diagnosis.

>

> anyway... we are on a path to try and find what to do next. she

is very smart, homeschooled, although this isn't easy for the simple

reason of that if she doesn't see a point in an activity or exercise,

she just won't do it. she'll say ok i'll do it... and then just

doesn't. she isn't aweful about it but i can tell my her demeanor

that she just isn't going to do it.

>

> she is currently into silent films and can tell you tons of tons

stuff about charlie chaplin and other silent film people. she is also

making some films, first on my simple digital camara and now on a

video camera that she got for her birthday.

>

> my husband is finally on board with the dx. it's taken years for

him to accept that there is an issue. typical dad thing. she is his

first biological child and he sees her as being just like him....

which tells me a lot, in an unsaid sort of way.

>

> anyway... i'm looking for support, and help dealing with and

finding direction and help with my child who has been diagnosed older

than the average child.

>

> thanks. reading everybodies posts is very inspirational, but

moreover it helps to see that other people go through similar

experiences.

>

> i think one of the worst comments i've gotten from people over

the years is that i just don't discipline my child enough or the

right way....

>

> peace

> michele

>

> __________________________________________________

>

[Guest guest]

Welcome Michele. Don't we all get those comments. People think that criticizing someone else somehow makes them better. Strange logic! Or illogic!

What I've read and my small experience with homeschooling is that you don't have to cover some 'curriculum' for your daughter to be educated. Home schooling -- the experience -- seems to work some 'magic' of its own, so I wouldn't stress over what she doesn't want to do. My $.02.

Love,

Francine

In a message dated 11/9/2007 10:40:43 P.M. Eastern Standard Time, jclintmurphy@... writes:

Hello and welcome! I am new too!>> i've been lurking for a week or two now and decided to say hello.> my name is michele, my 15 year old daughter has been just recently dx'ed with aspergers syndrom, although i've "known" for a while...or atleast suspected. she was dx'ed with sensory intergration disorder several years ago and even then i knew the dx wasn't exactly correct, although it worked at the time. i've always known this child was different. she is second in the birth order of 4 kids, three girls and then the boy. she cried 24/7 from the day she was born until she was 2. we had a horrible time potty training and she wasn't fully trained until she was atleast almost 5.> > she has been to school for pre-k through 2nd grade, homeschooled until the middle of 7th grade. from the middle of 7th until the middle of 9th grade she went to public school. 9th grade was a HUGE disaster, as the principal insisted she had oppositional defiant disorder. she totally did not "get" my daughter. and exposing my daughter to this woman is probably my biggerst regret in regards to my daughter. that and waiting so long for this diagnosis. > > anyway... we are on a path to try and find what to do next. she is very smart, homeschooled, although this isn't easy for the simple reason of that if she doesn't see a point in an activity or exercise, she just won't do it. she'll say ok i'll do it... and then just doesn't. she isn't aweful about it but i can tell my her demeanor that she just isn't going to do it.> > she is currently into silent films and can tell you tons of tons stuff about charlie chaplin and other silent film people. she is also making some films, first on my simple digital camara and now on a video camera that she got for her birthday.> > my husband is finally on board with the dx. it's taken years for him to accept that there is an issue. typical dad thing. she is his first biological child and he sees her as being just like him.... which tells me a lot, in an unsaid sort of way.> > anyway... i'm looking for support, and help dealing with and finding direction and help with my child who has been diagnosed older than the average child.> > thanks. reading everybodies posts is very inspirational, but moreover it helps to see that other people go through similar experiences.> > i think one of the worst comments i've gotten from people over the years is that i just don't discipline my child enough or the right way.... > > peace> michele > > __________________________________________________>

[Guest guest]

/?yguid=316468757

Check out this group for a yeast free diet. There are a ton of files

which are very helpful.

>

> I have been lurking on this board for a couple weeks and wanted to

introduce myself. My name is Crystal Musselman. I have 1 dd, ,

she is almost 9. She has (unfortunately) received just about the

full schedule of vaccines. I didn't start researching them until a

couple of years ago. She will NEVER get another one. I am a student

midwife, so I am surrounded by a good support group of non-

vaccinating families.

>

> I believe that my daughter did have a vacc. reation. After rec,

receiving a DTAP and Prevnar at 20mos. she ran a fever between 101-

102F for about 4 days despite treatment with tylenol and ibuprofen.

They never told me it was a reaction, but when I transfered

pediatricians, it was right there in her chart. They didn't tell me

not to get the DTaP or Prevnar again. My memory is splotchy, but

around this time she lost a little vocabulary and stopped growing her

vocabulary for a time. She did catch back up, but had issues with

pronunciation for a while. Also around this time, she had a brief

episode where she lost the ability to stand for about 48 hours. We

took her to the emergency room, where we were told she was " faking

it " . She also had a regression in potty training, were she was

almost completely potty-trained at 18mos., she was not potty-trained

until she was 4. During this time, she developed UTI's frequently

and yeast infections, and several

> boughts of gastroenteritis. She became a different child, having

extreme temper tantrums and scratching and biting herself.

>

> She has moved out of this a lot. I wonder if it is because of the

growing time since her last vaccination. She has regained her

vocabulary and is actually quite bright. She still struggles with

abstract thought, eye contact, swaying, hyperactivity, touch & taste

sensitivities, social appropriateness, and dealing with her

frustrations. She also has a small obsession with the number 9. I

believe she probably has mild Asperger's. She is doing play therapy

due to the separation of her father and I, and her counselor actually

asked me about it. As soon as they found out she was homeschooled

though, they immediately blamed her issues of a lack of

socialization, even after I tried to tell them that her issues in

Kindergarten are what prompted me to homeschool.

>

> I have read that vaccine reactions carry a genetic predisposition.

Does anyone know what the link between vaccines and meningitis is?

My family has had a total of 8 cases of meningitis among 4 family

members, both bacteria and viral. 2 cases were infants. All were

spread out and not carried from one person to the other. My mother

has had it 4 times. My sister and uncle had it at 3-6 mos. and both

almost died (coma, developmental issues, etc.). Also all of them had

non-febrile seizures after their meningitis episodes. My mother has

MS-like symptoms but no brain lesions.

>

> Any thoughts or suggestions out there??? I have heard about the

GFCF diet, and have thought about that. She still, along with

everyone else in my family it predisposed to yeast issues. And I

know that the diet would help with that. I am worried about labeling

her something, especially since it is a milder version. Should I

be? Please lend your knowledge when you have the opportunity. I

have decided I'm going to go and get more details med. records so I

will know the exacts. Thanks in advance!!!

>

>

[Guest guest]

hi all...finding this group & other sites has literally saved my sanity and

quite possible my life. i've only had a computer for about a week. i have

severe flatback (pitched forward at the hips +/- 35 degrees. i have two 14 inch

rods & eighteen 3 inch screws. my flatback is due to a failed fusion at L5 /

S1. until now, i have felt so isolated and a freek. for the first time in a

year & a half, i know i'm not alone. revision surgery is my only option. my

botched surgery was done in july 2007. the results were bad from the gate. the

stronger i got...the worse i got. i lost my job, insurance, & my husband. i

have another 15 months of a waiting period before i am elegible for medicare. i

am in bakersfield california. i have seen dr. pashman at cedars in los angeles,

but he no longer accepts medicare. i have been reading alot about a dr. lagrone

in amarillo texas. i am the strongest person i know...but this flatback

syndrome has done a real number on my head! like i said before, i now know that

i'm not alone. my heart goes out to anyone suffering from this condition. any

information on surgeons would be very much appreciated. even if you don't have

any information on surgeons, it would still be nice to hear from you.

[Guest guest]

Dear Kathy,

So sorry you find yourself needing to be among us. Flatback is tough, especially when you have insurance issues!

I have some questions. Who did the surgery in 2007, and was that your first long fusion surgery, for scoli? What is your age? Do you have family in Bakersfield, supportive and helpful? I'm glad you went to Pashman, I know finding docs that take medicare is a challenge. Dr. LaGrone is good, don't know if he takes medicare, in Calif, also the doc's at UCSF do this surgery a lot, Hu and Breven( I may have spellled that wrong, but will send their info in my next post). Also you can check out the Scoliosis Research Society website, they have an excellent doc locator by state and even city, you need to look for the terms aging spine, and adult in a doc description. You may have to travel a bit, but you have options in state.

With Flatback you just have to bite off the struggle a piece at a time, a big piece is finding your doc. Unfortunately due to insurance you are in a wait mode anyway, time to plan out and do phone work to see which doc's interest you. Have you got a copy of your films and any tests you have had done? Have you got surgical reports and office notes from the last doc? Those will be extreamly helpful. If you go to the our site itself, Cam has made a excellent list of questions to ask a prospective doc, tinker with that to fit your case.

Unfortunately you are not alone, I have been through it, Cam and the other moderators too, and reams of members here. We are here to support you as you fight this battle. I'm sorry anyone in this fine counrty lacks insurance, but at least with you it's a matter of time, so go into planning mode now, so when you have insurance you'll be ready.

So are you having pain? What are you doing for it? Were you tilted forward from the get go after surgery?What did your surgeon say? Pashman diagnosised you with Flatback?

I'm a California gal too, transplanted in Colorado, but grew up all over that state, and left when I was in my 30's, from Modesto. I have quite a bit of extended family in Bakersfield. Don't get back there often, out for the occasional wedding or funeral, as most of my family is now in Idaho.

I'll look up the info for UCSF and pass it along in my next post, visit the SRS site, read from our site, the FILES section is hugely valuable, I especially like the member stories section.

Welcome, and Merry Christmas!

Colorado Springs

[ ] new to group...

hi all...finding this group & other sites has literally saved my sanity and quite possible my life. i've only had a computer for about a week. i have severe flatback (pitched forward at the hips +/- 35 degrees. i have two 14 inch rods & eighteen 3 inch screws. my flatback is due to a failed fusion at L5 / S1. until now, i have felt so isolated and a freek. for the first time in a year & a half, i know i'm not alone. revision surgery is my only option. my botched surgery was done in july 2007. the results were bad from the gate. the stronger i got...the worse i got. i lost my job, insurance, & my husband. i have another 15 months of a waiting period before i am elegible for medicare. i am in bakersfield california. i have seen dr. pashman at cedars in los angeles, but he no longer accepts medicare. i have been reading alot about a dr. lagrone in amarillo texas. i am the strongest person i know...but this flatback syndrome has done a real number on my head! like i said before, i now know that i'm not alone. my heart goes out to anyone suffering from this condition. any information on surgeons would be very much appreciated. even if you don't have any information on surgeons, it would still be nice to hear from you.

[Guest guest]

Hi...

I just sent an email to the new patient coordinator, and will report back when I

hear from her.

And, by the way, as of 1/7, I'll actually be employed at UCSF. I've accepted

the position of Spine Research Associate II, and will be working on the Spinal

Deformity Study Group's adult and kid's long-term outcome studies.

By the way, merry Christmas (or happy holidays) everyone.

Regards,

>

> Kathy,

>

> Here is the UCSF info, our , a long time member here volunteers at UCSF,

and may chime in with more info on this set of doctors, google as I did, the

doctors of the UCSF Spine Center, tons of good info out there.

>

> Dr's Berven and Hu are names seen here, fully recommends Dr. Berven,

from seeing cases there, though she hasn't had revision with him herself( she

hasn't had revision) and we have had members use Dr. Hu.

>

> Info:

>

> Spine Center at UCSF

> 400 Parnassus Ave Fl 3rd

> SF, CA, 94143

> 415-353-2739

> 866-817-7463

>

> a doc referal system with UCSF, don't know anything about it,

>

> referral.center@...

>

> I had my Harrington Rod surgery there in 1973, and they were state of the art

for the time way back then, and will be a excellent resource for you since

she volunteers there now.

>

> There are doc's further afield, many have surgery near family, so if you have

family near another major city, we may have ideas for you for an opinion, just

let us know. While the list of doc's doing this often isn't huge, and not all

states have one, and many have to travel to get to a qualified doc, we will

help, and do keep in mind the SRS list.

>

>

> Colorado Springs

> [ ] new to group...

>

>

>

> hi all...finding this group & other sites has literally saved my sanity and

quite possible my life. i've only had a computer for about a week. i have severe

flatback (pitched forward at the hips +/- 35 degrees. i have two 14 inch rods &

eighteen 3 inch screws. my flatback is due to a failed fusion at L5 / S1. until

now, i have felt so isolated and a freek. for the first time in a year & a half,

i know i'm not alone. revision surgery is my only option. my botched surgery was

done in july 2007. the results were bad from the gate. the stronger i got...the

worse i got. i lost my job, insurance, & my husband. i have another 15 months of

a waiting period before i am elegible for medicare. i am in bakersfield

california. i have seen dr. pashman at cedars in los angeles, but he no longer

accepts medicare. i have been reading alot about a dr. lagrone in amarillo

texas. i am the strongest person i know...but this flatback syndrome has done a

real number on my head! like i said before, i now know that i'm not alone. my

heart goes out to anyone suffering from this condition. any information on

surgeons would be very much appreciated. even if you don't have any information

on surgeons, it would still be nice to hear from you.

>

[Guest guest]

Congratulations on your new position,

. I’m sure that they will benefit from your experience and look

forward to hearing how these studies are coming along.

Llweyn

From:

[mailto: ]

On Behalf Of

Sent: December-25-09 9:55 AM

Subject: [ ] Re:

new to group...

Hi...

I just sent an email to the new patient coordinator, and will report back when

I hear from her.

And, by the way, as of 1/7, I'll actually be employed at UCSF. I've accepted

the position of Spine Research Associate II, and will be working on the Spinal

Deformity Study Group's adult and kid's long-term outcome studies.

By the way, merry Christmas (or happy holidays) everyone.

Regards,

>

> Kathy,

>

> Here is the UCSF info, our , a long time member here volunteers at

UCSF, and may chime in with more info on this set of doctors, google as I did,

the doctors of the UCSF Spine Center, tons of good info out there.

>

> Dr's Berven and Hu are names seen here, fully recommends Dr. Berven,

from seeing cases there, though she hasn't had revision with him herself( she

hasn't had revision) and we have had members use Dr. Hu.

>

> Info:

>

> Spine Center at UCSF

> 400 Parnassus Ave

Fl 3rd

> SF, CA,

94143

> 415-353-2739

> 866-817-7463

>

> a doc referal system with UCSF, don't know anything about it,

>

> referral.center@...

>

> I had my Harrington Rod surgery there in 1973, and they were state of the

art for the time way back then, and will be a excellent resource for you

since she volunteers there now.

>

> There are doc's further afield, many have surgery near family, so if you

have family near another major city, we may have ideas for you for an opinion,

just let us know. While the list of doc's doing this often isn't huge, and not

all states have one, and many have to travel to get to a qualified doc, we will

help, and do keep in mind the SRS list.

>

>

> Colorado Springs

> [ ] new to group...

>

>

>

> hi all...finding this group & other sites has literally saved my

sanity and quite possible my life. i've only had a computer for about a week. i

have severe flatback (pitched forward at the hips +/- 35 degrees. i have two 14

inch rods & eighteen 3 inch screws. my flatback is due to a failed fusion

at L5 / S1. until now, i have felt so isolated and a freek. for the first time

in a year & a half, i know i'm not alone. revision surgery is my only

option. my botched surgery was done in july 2007. the results were bad from the

gate. the stronger i got...the worse i got. i lost my job, insurance, & my

husband. i have another 15 months of a waiting period before i am elegible for

medicare. i am in bakersfield california. i have seen dr. pashman at cedars in

los angeles, but he no longer accepts medicare. i have been reading alot about

a dr. lagrone in amarillo texas. i am the strongest person i know...but this

flatback syndrome has done a real number on my head! l >

[Guest guest]

,

Yeah, Finally one of us in a position such as this, Bravo to UCSF, and I'm so pleased for you!

Colorado Springs

[ ] new to group...> > > > hi all...finding this group & other sites has literally saved my sanity and quite possible my life. i've only had a computer for about a week. i have severe flatback (pitched forward at the hips +/- 35 degrees. i have two 14 inch rods & eighteen 3 inch screws. my flatback is due to a failed fusion at L5 / S1. until now, i have felt so isolated and a freek. for the first time in a year & a half, i know i'm not alone. revision surgery is my only option. my botched surgery was done in july 2007. the results were bad from the gate. the stronger i got...the worse i got. i lost my job, insurance, & my husband. i have another 15 months of a waiting period before i am elegible for medicare. i am in bakersfield california. i have seen dr. pashman at cedars in los angeles, but he no longer accepts medicare. i have been reading alot about a dr. lagrone in amarillo texas. i am the strongest person i know...but this flatback syndrome has done a real number on my head! like i said before, i now know that i'm not alone. my heart goes out to anyone suffering from this condition. any information on surgeons would be very much appreciated. even if you don't have any information on surgeons, it would still be nice to hear from you.>

[Guest guest]

Wishing you much luck - Kenny!When did you do treatment? What genotype did you have?Gloria

Hello everyone! My name is Kenny and I'm happy I found a support group for HCV. I've known I have HCV since 1998 and I had treatment with Pegasus once already. It made me sick, but also made my virus undetectable. I have a doctor's appointment on the 16th and I hope the test results were clean... Wish me luck!!