New here...

[Guest guest]

Welcome ! y name is kim, Im from NJ and im currently at 226. I too

go to the gym 4-5 times a week. I look forward to chatting with you

[Guest guest]

Sorry, my name is Kim. My daughter's birthday is also Oct 25. How

neat!!

> You did not say your name. But welcome. I pressed send before I

could

> finish. I have a 3 yr old girl to. I also have tons to lose.

This is a

> great bunch of gals. Check out the database at groups for our

group.

> Great info.

>

> NH

> Mommy to Abby Liz 10-25-94

> Mommy to Anne 7-1-99

[Guest guest]

>My daughter's birthday is also Oct 25. How

> neat!!

The *best* people were born in October.

Sue in NJ

bday Oct. 15th

[Guest guest]

Hey Traci,

Welcome to the group. We will all try to help you if we can. If you have questions ask away. Welcome again.

[Guest guest]

Welcome Traci. You are going to find just tons of stuff here! Have a great day.

Debby

[ ] New here...

Hi all! I am newly diagnosed with Autoimmune hepatitis and Lupus. I am still very new to all of this and am trying to adjust and deal with it. I am glad to have found some people who might understand all of it! Traci

[Guest guest]

Traci:

Welcome. Post anytime! Marty

[ ] New here...

Hi all! I am newly diagnosed with Autoimmune hepatitis and Lupus. I am still very new to all of this and am trying to adjust and deal with it. I am glad to have found some people who might understand all of it! Traci

[Guest guest]

Hi Traci!

Welcome to a our group. You will find lots of wonderful folks here,

it's just a shame the reason that brought us all together. Ask

away, there is always someone who can respond.

nne

> Hi all!

> I am newly diagnosed with Autoimmune hepatitis and Lupus. I

am

> still very new to all of this and am trying to adjust and deal

with

> it. I am glad to have found some people who might understand all

of

> it!

> Traci

[Guest guest]

Welcome Traci !! .... come on in.... the waters fine

love jerry

[Guest guest]

Welcome Traci,

I am sorry you have to deal with your diseases. I only have AIH, dx

in 9/01. Trust me, it will take a while for it all to sink in. You

will be learning for a while. I still am learning things, 2 years

later. I am learning to say no and rest when I need to. I am a pusher

and I have to learn to slow down sometimes.

You will find a great many wonderful and caring people here. I don't

post a lot, but I read all the posts and am encouraged & enlightened

reading them.

Take care and stick with us!!

My name is also , but I sign off as " Tra in LA " . Welcome!!

> Hi all!

> I am newly diagnosed with Autoimmune hepatitis and Lupus. I am

> still very new to all of this and am trying to adjust and deal with

> it. I am glad to have found some people who might understand all

of

> it!

> Traci

[Guest guest]

??????? Of course it's hypothyroidism with a very high TSH. I think you

need to educate yourself and quickly find a competent doc.

http://www.thyroid.about.com

http://www.geocities.com/thyroide

Gracia

>

> Hi all,

> Any opinions??? My hair has been falling out in clumps, my muscles

> ache and I am tired all the time. My r side neck is sore, it feels

> like I slept on it wrong and when I turn my head It feels like there

> is a ball in there. I had a T4= normal, a TSH elevated @ 5.50 and an

> u/s that was unremarkable. They want to wait 6 weeks and have labs

> drawn again.

> Does this sound like hypothyroidism?

> Could it be something else?

> What is the treatment for HT?

> Any other tests I should have?

> 6 weeks wait, is that normal?

>

> Thanks for you input!!

>

> Mandy

>

>

>

>

>

>

[Guest guest]

Hi

Visit karens site at enzymestuff.com and click on the teach me quick FAQ to

give you a idea and then come back and post any queries

Mandi in Uk - PS her book is well worth the money also

Hi, I'm new here. And was wondering if anyone could tell me

about 'enzyme therapy' for autism. Not so much the gfcf diet...but

if there is an 'enzyme therapy'...that doesn't include the gfcf diet.

I'm just a little confused.

[Guest guest]

L'Dab,

Mandi's suggestion is excellent. I would definitely read the book as well.

It is called Enzymes for Autism and Other Neurological Conditions ( is

DeFelice.) You can buy the book at her website or at amazon.com. It is

difficult to give a short synopsis of enzyme therapy. 's book and website

do a great job. We are all here to answer your questions afterward.

Robin

Visit karens site at enzymestuff.com and click on the teach me quick FAQ to

give you a idea and then come back and post any queries

Mandi in Uk - PS her book is well worth the money also

[Guest guest]

forgot to sign my name to mt post- shellie

>

> hi, i am new here. i have not been diagnosed with PBC yet. i had

2

> blood tests come back that indicate that i might possibly have

it.

> i am awaiting the ultrasound on my liver (which they took over one

> week ago). i have been looking up PBC on the internet so i can

> maybe somewhat be prepared-if possible-for a positive diagnosis.

i

> thought i would join this group to find out more on symptoms,

> prognosis, etc. and maybe while i'm here offer support to any of

> you who may need a shoulder (i know in my life i have certainly

> appreciated the occasional shoulder or sympathetic ear). i will

> tell you a little about me...

> i am a 32 y/o married woman. i have had numerous health issues

> since i was involved in a car wreck in '96 (don't know if that was

> the " trigger " for alot of this or not). i really dont know where

to

> begin...i have had daily pain, fatigue, depression since the car

> wreck. i thought at first oh well, maybe its just me getting

older-

> well, i wasn't that old when all of this began! my FNP (who is

> great) assured me that at my age i was not supposed to be feeling

> like this. that started several years of specialists, blood

tests,

> xrays, medications, etc. i have been diagnosed (a long time

comin')

> with fibromyalgia, psuedotumor cerebri, kidney stones-(hopefully

> that is fixed), ruptured disk. i constantly feel " not quite

right "

> with terrible fatigue, muscle pain and aches, flu like symptoms,

low

> grade fever, joint pain sometimes so bad i can't even move. all

> this ended me up at the 3rd rheumatologist who did a series of

more

> extensive blood tests. i have been tested for lupus (my mother

has

> it), RA, among other things, thats when the 2 PBC tests came back

> elevated. the rheumatologist chose NOT to discuss this with me as

> he was having a bad day and was overbooked and in a hurry to rush

me

> out so he could get his lunch break (he told me this). as an

> afterthought he

> said " oh yeh here is your blood test results " and handed me a

copy.

> he did not go over them at all and sent me on my way. i was

> floored. i did not go back to him, found myself a new

> rheumatologist whom i have an upcoming appointment with (keep

> fingers crossed). it wasnt til weeks later that my PCP was going

> over the test results and was concerned with the AMA and another

> test (cant rem. which one) and wanted me to go for an ultrasound.

> that is where i am now-waiting, worrying, wondering, and hoping

for

> the best.

> i know this has been a very long post (sorry) but sometimes it

helps

> just to get it out in black and white. thanks for letting me

ramble

> on. hopefully i can learn some things from ya'll (heehee-yes i am

> from the southern usa).

[Guest guest]

Hi Lynn - I do have 2 lesions on my ribs and they are called hemanigomas. They

are from accident, or trauma. It was from my younger days (I am 56) and being

in an abusive relationship a couple of years before I met my current husband (we

have been married 30 years). They are T-2 (complex mass) and have blood vessels

running thru it..That is why my neurosurgeon will not operate. They send signals

every once in a while (pain) but they are not going to get any worse. Just

wanted to let you know what mine are called. I got my records from the HMO and

that is how I found out what they are called....Joanne

Lynne <lfetterman65@...> wrote:

Hi all-

My name is Lynne, I am 39 yo, with a 3 1/2 year old son. I had C5-7

fused 2 years ago, as a result of a car accident 3 1/2 years ago. The

fusion took, but the pain has never completely gone away. Last

weekend I took a bad fall, and completely set off the pain cycle

again. I had a CAT scan and a MRI this week to check things. I have

2 additional disk herniations at C3/4 (this was existing at the time

of the surgery) and at C2/3.

I also have a spinal lesion at about C4 that was also existing at the

time of the surgery, but appears to be getting larger according to the

most recent MRI. This is totally freaking me out.... The C3/4

herniation is pretty close to my spinal cord, but I don't know yet

what they are going to recommed I do next. I am terrified of the

thought of either of these things worsening, and putting me in a

wheelchair or on a ventilator. I know this is pretty heavy for an

intro, but I figure if not here, then where? Hope it's ok... I am

sure parents out there can relate.

Anyone have any experience with disk problems at these levels? Or

spinal lesions, for that matter? MS has been ruled out to the extent

possible- theory is that it is a result of the trauma from the accident.

Thanks, Lynne

[Guest guest]

Hi Lynn - I do have 2 lesions on my ribs and they are called hemanigomas. They

are from accident, or trauma. It was from my younger days (I am 56) and being

in an abusive relationship a couple of years before I met my current husband (we

have been married 30 years). They are T-2 (complex mass) and have blood vessels

running thru it..That is why my neurosurgeon will not operate. They send signals

every once in a while (pain) but they are not going to get any worse. Just

wanted to let you know what mine are called. I got my records from the HMO and

that is how I found out what they are called....Joanne

Lynne <lfetterman65@...> wrote:

Hi all-

My name is Lynne, I am 39 yo, with a 3 1/2 year old son. I had C5-7

fused 2 years ago, as a result of a car accident 3 1/2 years ago. The

fusion took, but the pain has never completely gone away. Last

weekend I took a bad fall, and completely set off the pain cycle

again. I had a CAT scan and a MRI this week to check things. I have

2 additional disk herniations at C3/4 (this was existing at the time

of the surgery) and at C2/3.

I also have a spinal lesion at about C4 that was also existing at the

time of the surgery, but appears to be getting larger according to the

most recent MRI. This is totally freaking me out.... The C3/4

herniation is pretty close to my spinal cord, but I don't know yet

what they are going to recommed I do next. I am terrified of the

thought of either of these things worsening, and putting me in a

wheelchair or on a ventilator. I know this is pretty heavy for an

intro, but I figure if not here, then where? Hope it's ok... I am

sure parents out there can relate.

Anyone have any experience with disk problems at these levels? Or

spinal lesions, for that matter? MS has been ruled out to the extent

possible- theory is that it is a result of the trauma from the accident.

Thanks, Lynne

[Guest guest]

Hello. I am new to your group (and I hope I am in the right place). My 7-year old daughter Sydney has cerebral palsey and seizures. She is also severely delayed in all areas due to a birth injury. Recently she was diagnosed with scoliosis (and, now, a hip problem as well). What her doctor is telling us, even though she is too young for surgery, her spine curve is at 70 degrees, therefore, he wants to fuse the bottom of her spine, and then, later in another 3 years or so, do the top. My husband and I are trying desperately to find alternative treatments to surgery, especially at this young age, at least if nothing else, to prolong surgery. I have heard of Feldenkrais therapy, however I have no clue how effective it is, plus we live in Hemet, California, so we don't have a lot of options out here. We drive to San Diego Children's to see her ortho.

Anywho, I don't want to bore any of you as I don't even know you all yet - lol, plus I should get to work, but if anyone has any ideas of how to position her to prolong any further curve, I would certainly appreciate it! I promise I won't get in the way much, and I hope to hear from you. Thank you so much for listening.

Barbara (mom to Sydney & )

[Guest guest]

Hi, I live here in San Diego and I also take my son to the

Children's hospital. He was diagnsed with scoliosis about a month or

so ago and they have been great with him. If you have Dr. Newton

he's a scoliosis specialist and does great fusions from what I've

heard. I was told by many people that he is one of the best in the

business and the best at all the hospitals here. You might want to

switch to him if you can.

I don't know much about this stuff since I'm so new to the situation

too, but maybe a cast or brace will hold her off for a while till

you feel she's older to get the surgery.

( 4 & Logan 1)

> Hello. I am new to your group (and I hope I am in the right

place). My

> 7-year old daughter Sydney has cerebral palsey and seizures. She

is also severely

> delayed in all areas due to a birth injury. Recently she was

diagnosed with

> scoliosis (and, now, a hip problem as well). What her doctor is

telling us,

> even though she is too young for surgery, her spine curve is at 70

degrees,

> therefore, he wants to fuse the bottom of her spine, and then,

later in another 3

> years or so, do the top. My husband and I are trying desperately

to find

> alternative treatments to surgery, especially at this young age,

at least if

> nothing else, to prolong surgery. I have heard of Feldenkrais

therapy, however I

> have no clue how effective it is, plus we live in Hemet,

California, so we

> don't have a lot of options out here. We drive to San Diego

Children's to see her

> ortho.

>

> Anywho, I don't want to bore any of you as I don't even know you

all yet -

> lol, plus I should get to work, but if anyone has any ideas of how

to position

> her to prolong any further curve, I would certainly appreciate

it! I promise I

> won't get in the way much, and I hope to hear from you. Thank you

so much

> for listening.

>

> Barbara (mom to Sydney & )

[Guest guest]

Welcome

I am not sure what measures they would take but You can always ask about casting it seems to hold the curve really well for older children

Sorry I do not have more information for you

Hopefully I can help along the way with other questions

keep us posted

jmdroberts <jmdroberts@...> wrote:

Hi, I live here in San Diego and I also take my son to the Children's hospital. He was diagnsed with scoliosis about a month or so ago and they have been great with him. If you have Dr. Newton he's a scoliosis specialist and does great fusions from what I've heard. I was told by many people that he is one of the best in the business and the best at all the hospitals here. You might want to switch to him if you can. I don't know much about this stuff since I'm so new to the situation too, but maybe a cast or brace will hold her off for a while till you feel she's older to get the surgery. ( 4 & Logan 1)> Hello. I am new to your group (and I hope I am in the right place). My > 7-year old daughter Sydney has

cerebral palsey and seizures. She is also severely > delayed in all areas due to a birth injury. Recently she was diagnosed with > scoliosis (and, now, a hip problem as well). What her doctor is telling us, > even though she is too young for surgery, her spine curve is at 70 degrees, > therefore, he wants to fuse the bottom of her spine, and then, later in another 3 > years or so, do the top. My husband and I are trying desperately to find > alternative treatments to surgery, especially at this young age, at least if > nothing else, to prolong surgery. I have heard of Feldenkrais therapy, however I > have no clue how effective it is, plus we live in Hemet, California, so we > don't have a lot of options out here. We drive to San Diego Children's to see her > ortho. > > Anywho, I don't want to bore any of you as I don't even

know you all yet - > lol, plus I should get to work, but if anyone has any ideas of how to position > her to prolong any further curve, I would certainly appreciate it! I promise I > won't get in the way much, and I hope to hear from you. Thank you so much > for listening. > > Barbara (mom to Sydney & )__________________________________________________

[Guest guest]

<><<<Hi, I live here in San Diego and I also take my son to the Children's hospital. He was diagnsed with scoliosis about a month or so ago and they have been great with him.

Hi . Thank you so much. We have just recently started seeing Dr. Newton, so I'm so glad to hear he is one of the best. We had a brace for quite some time, but the brace was just awful for our situation. Our daughter has seizures every day, so every time she has one we have to take it off, and every time I have to change her we have to take it off as well. We have had it cut 3 times but it is still not working out. In fact, Dr. Newton said the brace would not keep her curve from getting worse. Hoping we can prolong the inevitable some way! Barbara

[Guest guest]

<<<I am not sure what measures they would take but You can always ask about casting it seems to hold the curve really well for older children

Thank you so much . I will ask about that, have never heard of it, but will definately bring it up.

Barbara

[Guest guest]

HI Barbara,

I have no idea if casting is an option for you, but definitely something to research. My daughter Moriah, has had several surgeries for her scoliosis. Her story is at www.infantilescoliosis.org. We have had fusions and most recently the VEPTR (Vertical Expandable Prosthetic Titanium Rib) implants.(www.veptr.com). If I could go back again I would have casted her first, skipped the fusions (so she could grow more) and then done the VEPTR. I would try any other option before pursuing something as final as fusion. Just my opinion. I'm sure others here on the group will have more info to add. Welcome to the group.

Shellie Grantcanthang4nutn@... wrote:

Hello. I am new to your group (and I hope I am in the right place). My 7-year old daughter Sydney has cerebral palsey and seizures. She is also severely delayed in all areas due to a birth injury. Recently she was diagnosed with scoliosis (and, now, a hip problem as well). What her doctor is telling us, even though she is too young for surgery, her spine curve is at 70 degrees, therefore, he wants to fuse the bottom of her spine, and then, later in another 3 years or so, do the top. My husband and I are trying desperately to find alternative treatments to surgery, especially at this young age, at least if nothing else, to prolong surgery. I have heard of Feldenkrais therapy, however I have no clue how effective it is, plus we live in Hemet, California, so we don't have a lot of options out here. We drive to San Diego Children's to see her ortho.

Anywho, I don't want to bore any of you as I don't even know you all yet - lol, plus I should get to work, but if anyone has any ideas of how to position her to prolong any further curve, I would certainly appreciate it! I promise I won't get in the way much, and I hope to hear from you. Thank you so much for listening.

Barbara (mom to Sydney & )__________________________________________________

[Guest guest]

<<<If I could go back again I would have casted her first, skipped the fusions (so she could grow more) and then done the VEPTR. I would try any other option before pursuing something as final as fusion. Just my opinion. I'm sure others here on the group will have more info to add. Welcome to the group.

Thank you Shellie. The site was very informative and I printed out some info and also bookmarked the site. I am definately going to ask about casting, perhaps Sydney will be a candidate for that. I am really not one to rush into surgery, especially at this young age. BTW, your daughter is lovely!Barbara

[Guest guest]

I do not know if you could use a cast because they do not come offcanthang4nutn@... wrote:

<><<<Hi, I live here in San Diego and I also take my son to the Children's hospital. He was diagnsed with scoliosis about a month or so ago and they have been great with him.

Hi . Thank you so much. We have just recently started seeing Dr. Newton, so I'm so glad to hear he is one of the best. We had a brace for quite some time, but the brace was just awful for our situation. Our daughter has seizures every day, so every time she has one we have to take it off, and every time I have to change her we have to take it off as well. We have had it cut 3 times but it is still not working out. In fact, Dr. Newton said the brace would not keep her curve from getting worse. Hoping we can prolong the inevitable some way! Barbara

__________________________________________________

[Guest guest]

Barbara,

Welcome to CAST (casting as an alternative for scoliosis treatment)!

My daughter is also 7yrs old with a severe curve. We have chosen POP jackets (plaster casts) to hold her curve until she is at a more appropriate age for surgery.

I'de be happy you to answer any questions that you may have about the casting procedure.

Sincerely,

HRH ()

Re: New here...

Hello. I am new to your group (and I hope I am in the right place). My 7-year old daughter Sydney has cerebral palsey and seizures. She is also severely delayed in all areas due to a birth injury. Recently she was diagnosed with scoliosis (and, now, a hip problem as well). What her doctor is telling us, even though she is too young for surgery, her spine curve is at 70 degrees, therefore, he wants to fuse the bottom of her spine, and then, later in another 3 years or so, do the top. My husband and I are trying desperately to find alternative treatments to surgery, especially at this young age, at least if nothing else, to prolong surgery. I have heard of Feldenkrais therapy, however I have no clue how effective it is, plus we live in Hemet, California, so we don't have a lot of options out here. We drive to San Diego Children's to see her ortho.

Anywho, I don't want to bore any of you as I don't even know you all yet - lol, plus I should get to work, but if anyone has any ideas of how to position her to prolong any further curve, I would certainly appreciate it! I promise I won't get in the way much, and I hope to hear from you. Thank you so much for listening.

Barbara (mom to Sydney & )

[Guest guest]

<< Being no expert, I will probably muddle this up, but I have nurses in my home for Moriah who pass along information to me from time to time. Apparently there is a diet that might help reduce seizures. The search word would be Ketogenic Diet. Try Adam's Story also.

Hi Shellie. Thanks so much. Actually Sydney has been on the keto diet since she was 10 months of age, although she's on a very loose modified version now (almost Atkins-like). She started off at about 50+ seizures a day, the meds were making her worse, now we are down to about 5 a day on a good day. It's been nothing short of a life-saver for us! I didn't bring it up here, but I probably should have mentioned that she is on the diet. Now that's one thing I do have tons of info about - lol, if you ever hear of anyone who needs info you can send them my way if you like. The scoliosis is new to me, and I really do appreciate all of this information.

Brabara