Thank You!!

[Guest guest]

((((((((((group)))))))))

Thanks so much everyone for responding so quickly to the " rash " post.

The rash is already gone, so I'm hoping it isn't what we fear!

He's also complained of leg pains over the last couple years. So is it

growing pains or something else?? Gads, when do you draw the line?? How can

you NOT be paranoid with what we experience/know?? It drives me nutty! He

has had the LUAT in the past, which was negative, thank goodness, but that

doesn't mean anything eiter. SHEESH.

Anyways, the rash was short-lived and hopefully it wasn't anything. I'm

going to bring him in anyways and request that he be retested. Just for

peace of mind! I'm always so paranoid that I've passed this onto my kids.

Enough rambling...

Take care and thank you!!!!!

Anita

Re: [Lyme-aid] AHHHHH! Silver Dollar Tick Bites.

>From: SEAFRAN731@...

>

>In a message dated 9/2/1999 9:34:21 AM Eastern Daylight Time,

>starshar@... writes:

>

>> My five year old has *some* kind of rash on his back. (oh #@@#) It's a

>> little bigger than a silver dollar, perfectly round and red, but with

like

>a

>> white puffy or inflamed center where the bite is....could this be one??

It

>> doesent quite match the pics of rashes that I have seen but......... or

is

>> this a spider bite and I'm over reacting???

>>

>> TELL ME IT AIN'T SO!!!!!!!

>>

>> Anita

>Hello Anita:

>I read that you have an appt for your son already.....and taking

>a picture is a great idea!

>

>I just thought I would let you know that I had the silver dollar

>size rashes with the white centers.....(like small bullseyes) these

>were located under my breast.....I had several of them too.......

>I have since discovered that these WERE lyme rashes.....

>

>I also had a huge red rash under my belly......about 9inchesx6inches

>that also was from a tick bite!

>

>My doctor has a poster in his office that shows both of these

>types of rashes.....so it is true, they could be from lyme.

>

>My rashes neither hurt nor itched. Good luck with your son....I am sure it

>will all work out and be ok.

>

>Your son sounds so adorable!! I have a niece and a nephew who

>also just started kindergarten. I remember when my son started

>kindergarten......my son is now starting HIGH SCHOOL.....or

>where or where does the time go?????????

>

>I will keep you all in my prayers!

>

>love and hugs,

>Fransea

>NJ Seashore

>

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

[Guest guest]

You might try 's pediatrician for a prescription.Ours prescribed for

awhile until we found another psychiatrist.

Theresa

Thank You!!

> From: Knod <kelly@...>

>

> First, I wanted to thank you all for your wonderful advice. I have been

> reading all the emails from the list and I am so happy that I am able to

> find this kind of experience and knowledge. It is a huge relief!

>

> I will keep reading the list but won't be able to contribute much until

> the end of this month. Besides having an 8 year old with OCD I have 3

> other daughters under the age of 10. I am leaving my kids for the first

> time on Friday and will be gone for a week. This couldn't have come at

> a worse time, s OCD is off the charts. I have enlisted the help

> of her school Counselor and some friends to help my Mother-in-law who

> will be staying here. I feel somewhat O.K. about going. (NOT!) =-)

>

> Quickly I wanted to share something. We have had the worst luck finding

> Doctors. At age 2 I took in to her Pediatrician. Of course,

> this was all just a stage and I was a worried Mom. At age 3 I knew it

> wasn't a stage and tried to find help again. This time I was able to

> see a Child Psych. went through about 6 months of play/talk

> therapy. During this time she got MUCH worse. The Doctors never saw

> any of her OCD, she would just sit there during her therapy. Their take

> on the situation was this, Children that are 3 years old do not have

> OCD. It MUST be bad parenting or abuse. I asked if she could possibly

> be put on medication, I was told by the head of the department, the head

> P Doc that he was now sure that was being abused because NO

> parent would want their 3 year old put on medication. I called him an

> idiot and walked out.

>

> It would take us another 6 months of being home bound before we

> would find the right Doctors. We moved from California to Oregon and

> took to OHSU in Portland. They actually have an entire

> department devoted to OCD and Tourettes. started Medication and

> our search for a BT began. To make a long story short, we have seen the

> " Best " Child Psych in our area, which is So. Oregon, and he was a Dork.

> He never wanted to increase her meds even though I knew she wasn't on a

> high enough dose for OCD. But then, what do I know. So I found another

> Doctor. I really like this last Doctor, she didn't have experience with

> OCD but she was open to any suggestions I had. had just started

> to trust her when the Doctor decided to take another position. Which

> leaves us without a Doctor once again at the worst possible time. This

> last Doctor started on 25mg Anafranil and we are not at 50mg, I

> KNOW that is not a high enough dose but these people just aren't

> experienced.

>

> Good News, I found a Doctor who worked at OHSU 2 years ago and is

> supposed to be the best Doc in the area. He is 2 hours east of us. So,

> our insurance won't cover him. I called the insurance Company and asked

> them if they really wanted to pay for us to see a Doctor who doesn't

> know anything about this disorder and can't help our daughter or should

> she see somebody who knows what they are talking about? They are going

> to listen to my request, I just need to send them letters from every

> Doctor and Counselor I can get one from. My concern is that we won't be

> able to get in before s meds run out, I have no choice but to go

> out of town...so I have to get all this done before Friday.

>

> Thanks for listening. I just wanted to share a little background. I

> have researched and have fought and fought for help for , I think

> that right now I am just tired of fighting. I am also tired of watching

> her suffer. I increased her Anafranil to 75mg today.

>

> Thank you again.

>

>

>

>

> --

> Knod

>

> The Dental Site

> http://www.dentalsite.com

> mailto:kelly@...

>

> For Banner Advertising information:

> http://www.dentalsite.com/sponsors.html.

>

> > You may subscribe to the OCD-L by emailing

> listserv@... .

> In the body of your message write:

> subscribe OCD-L your name.

> The archives for the OCD and

> Parenting List may be accessed by going to

> .

> Enter your email address and password.

> Click on the highlighted list name and then click on index.

[Guest guest]

Oh , I just sympathize so much with what you're going through. As

if having a child with OCD weren't challenging enough. This reminds me

that so much of the world still must be educated about OCD.

What you've written about your search for docs and treatment made me

realize that we've had some very lucky breaks, and makes me more

appreciative. andra's treatment team is pretty good and she's doing

well (with all the ups and downs just like everyone). The only place

where we've had no luck is with our health insurance.

For what we're paying for andra's treatment (meds doctor and CBT

therapist), she could be going to a very nice private school. Don't get

me wrong, we feel so blessed that we're able to pay for it at all. Our

insurance covers only her prescription, and even then we have a

deductible. Just keeping our fingers crossed that the old cars have

another few years in them.

, you are a testament to the parents who never give up. BTW,

andra's OCD started very early on, as well. For sure by age two and

a half, and probably even before.

Good luck to you and you'll be in my thoughts,

Lesli (Bay Area)

Knod wrote:

>

>

> Quickly I wanted to share something. We have had the worst luck finding

> Doctors. At age 2 I took in to her Pediatrician.

[Guest guest]

So sorry Im late responding to you guys. I don't know if I'm coming or

going half the time But, you guys wouldn't know what I mean, would ya?

<g>

Thank you so much for all your kind words in regards to this Flagyl episode.

It really means a lot.

I think I've been upgraded to " subhuman " now and am coping better. Can't do

a whole lot but at least now I don't feel like I did before. (knock on

wood)

I have a terrible time asking for help...dont know if its pride or what.

Plus, I lost 99 percent of my " friends " when I got sick and really don't

have support from the " family " . Heck, it took my father six years to

believe I was sick!! The only reason he believes me now is because I was in

part of a local newspaper article about Lyme. (thanks to Carol..LOL) After

he read it I heard he said " Oh, I guess she does have Lyme " .

arrrrrrrgggg!!!

Anyways, there are a couple of other moms that I can ask when I get in a

bind. They have helped in the past and I guess I just hate to ask again.

This one mom drove my son to preschool every day one year....gawd, this was

just awful for a mom's ego!! I know they are very active and I just hate to

bother them. You just go what you gotta do, huh??

Anyways, thanks again everyone. It really helped a lot.

Hugs,

Anita (THINK SPRING!!!)

[Guest guest]

So sorry Im late responding to you guys. I don't know if I'm coming or

going half the time But, you guys wouldn't know what I mean, would ya?

<g>

Thank you so much for all your kind words in regards to this Flagyl episode.

It really means a lot.

I think I've been upgraded to " subhuman " now and am coping better. Can't do

a whole lot but at least now I don't feel like I did before. (knock on

wood)

I have a terrible time asking for help...dont know if its pride or what.

Plus, I lost 99 percent of my " friends " when I got sick and really don't

have support from the " family " . Heck, it took my father six years to

believe I was sick!! The only reason he believes me now is because I was in

part of a local newspaper article about Lyme. (thanks to Carol..LOL) After

he read it I heard he said " Oh, I guess she does have Lyme " .

arrrrrrrgggg!!!

Anyways, there are a couple of other moms that I can ask when I get in a

bind. They have helped in the past and I guess I just hate to ask again.

This one mom drove my son to preschool every day one year....gawd, this was

just awful for a mom's ego!! I know they are very active and I just hate to

bother them. You just go what you gotta do, huh??

Anyways, thanks again everyone. It really helped a lot.

Hugs,

Anita (THINK SPRING!!!)

[Guest guest]

Hi Anita,

Glad we could help you out. I do understand about Pride, I have too

damn much of it myself, it is a sin I think too....so I guess you and I will

burn in hell. Have to laugh, your father didn't believe you had LD till he

read it in the paper....it is so true, how the media and their sound bites

are so believable to many of us. I guess with all the false hype that LD is

easily cured with a few short weeks abx, has been publicized so long that it

is hard for people to believe us. Keep hanging in there girl, and ask for

help, I promise I will too, if you do.

Hugs,

Marta

>From: " Anita " <starshar@...>

>

>So sorry Im late responding to you guys. I don't know if I'm coming or

>going half the time But, you guys wouldn't know what I mean, would ya?

><g>

>

>Thank you so much for all your kind words in regards to this Flagyl

episode.

>It really means a lot.

>

>I think I've been upgraded to " subhuman " now and am coping better. Can't

do

>a whole lot but at least now I don't feel like I did before. (knock on

>wood)

>

>I have a terrible time asking for help...dont know if its pride or what.

>Plus, I lost 99 percent of my " friends " when I got sick and really don't

>have support from the " family " . Heck, it took my father six years to

>believe I was sick!! The only reason he believes me now is because I was in

>part of a local newspaper article about Lyme. (thanks to Carol..LOL)

After

>he read it I heard he said " Oh, I guess she does have Lyme " .

>arrrrrrrgggg!!!

>

>Anyways, there are a couple of other moms that I can ask when I get in a

>bind. They have helped in the past and I guess I just hate to ask again.

>This one mom drove my son to preschool every day one year....gawd, this was

>just awful for a mom's ego!! I know they are very active and I just hate to

>bother them. You just go what you gotta do, huh??

>

>Anyways, thanks again everyone. It really helped a lot.

>

>Hugs,

>Anita (THINK SPRING!!!)

[Guest guest]

Hi Anita,

Glad we could help you out. I do understand about Pride, I have too

damn much of it myself, it is a sin I think too....so I guess you and I will

burn in hell. Have to laugh, your father didn't believe you had LD till he

read it in the paper....it is so true, how the media and their sound bites

are so believable to many of us. I guess with all the false hype that LD is

easily cured with a few short weeks abx, has been publicized so long that it

is hard for people to believe us. Keep hanging in there girl, and ask for

help, I promise I will too, if you do.

Hugs,

Marta

>From: " Anita " <starshar@...>

>

>So sorry Im late responding to you guys. I don't know if I'm coming or

>going half the time But, you guys wouldn't know what I mean, would ya?

><g>

>

>Thank you so much for all your kind words in regards to this Flagyl

episode.

>It really means a lot.

>

>I think I've been upgraded to " subhuman " now and am coping better. Can't

do

>a whole lot but at least now I don't feel like I did before. (knock on

>wood)

>

>I have a terrible time asking for help...dont know if its pride or what.

>Plus, I lost 99 percent of my " friends " when I got sick and really don't

>have support from the " family " . Heck, it took my father six years to

>believe I was sick!! The only reason he believes me now is because I was in

>part of a local newspaper article about Lyme. (thanks to Carol..LOL)

After

>he read it I heard he said " Oh, I guess she does have Lyme " .

>arrrrrrrgggg!!!

>

>Anyways, there are a couple of other moms that I can ask when I get in a

>bind. They have helped in the past and I guess I just hate to ask again.

>This one mom drove my son to preschool every day one year....gawd, this was

>just awful for a mom's ego!! I know they are very active and I just hate to

>bother them. You just go what you gotta do, huh??

>

>Anyways, thanks again everyone. It really helped a lot.

>

>Hugs,

>Anita (THINK SPRING!!!)

[Guest guest]

In a message dated 02/28/2000 10:39:39 PM Eastern Standard Time,

moody@... writes:

<< I want to thank all of you too! I really enjoyed reading all about your

trip and look forward to hearing more! My server is down for days at a

time now..gee and I used to complain about hours of down time..but I

have been coming here when I do get a connection..and just before I get

booted...grrrr.

Thanks for sharing!

>>

hey ,

try the aol for the free 250 hours just so you can connect when your server

is down. You can then at least access the website to read and post

Barb

who missed hearing from you but now will be afk a couple of days

[Guest guest]

In a message dated 02/28/2000 10:39:39 PM Eastern Standard Time,

moody@... writes:

<< I want to thank all of you too! I really enjoyed reading all about your

trip and look forward to hearing more! My server is down for days at a

time now..gee and I used to complain about hours of down time..but I

have been coming here when I do get a connection..and just before I get

booted...grrrr.

Thanks for sharing!

>>

hey ,

try the aol for the free 250 hours just so you can connect when your server

is down. You can then at least access the website to read and post

Barb

who missed hearing from you but now will be afk a couple of days

[Guest guest]

nesteabe-@... wrote:

original article:tae-bo_on/?start=13097

> I would like to thank you all, , , , Elena, Patti

,

> and what's her name... oh Susi for the GREAT postings!! They were

LONG

> and detailed... just like I like. I know you all are exhausted so

it's

> wonderful that you took the time to clue us in on all of the CA

happenings.

> You guys had a great time!! Wow, that is just so cool. For the

record I

> only pick on Susi because she's a fellow Minnesotan... she knows I

would

> never forget her name.

>

> Jenni

I want to thank all of you too! I really enjoyed reading all about your

trip and look forward to hearing more! My server is down for days at a

time now..gee and I used to complain about hours of down time..but I

have been coming here when I do get a connection..and just before I get

booted...grrrr.

Thanks for sharing!

[Guest guest]

nesteabe-@... wrote:

original article:tae-bo_on/?start=13097

> I would like to thank you all, , , , Elena, Patti

,

> and what's her name... oh Susi for the GREAT postings!! They were

LONG

> and detailed... just like I like. I know you all are exhausted so

it's

> wonderful that you took the time to clue us in on all of the CA

happenings.

> You guys had a great time!! Wow, that is just so cool. For the

record I

> only pick on Susi because she's a fellow Minnesotan... she knows I

would

> never forget her name.

>

> Jenni

I want to thank all of you too! I really enjoyed reading all about your

trip and look forward to hearing more! My server is down for days at a

time now..gee and I used to complain about hours of down time..but I

have been coming here when I do get a connection..and just before I get

booted...grrrr.

Thanks for sharing!

[Guest guest]

I wanted to thank everyone who went to the tapings for sharing your

expeience while you were all there. Makes me want to go to a live taping

now!

Re: Thank you!!

> nesteabe-@... wrote:

> original article:tae-bo_on/?start=13097

> > I would like to thank you all, , , , Elena, Patti

> ,

> > and what's her name... oh Susi for the GREAT postings!! They were

> LONG

> > and detailed... just like I like. I know you all are exhausted so

> it's

> > wonderful that you took the time to clue us in on all of the CA

> happenings.

> > You guys had a great time!! Wow, that is just so cool. For the

> record I

> > only pick on Susi because she's a fellow Minnesotan... she knows I

> would

> > never forget her name.

> >

> > Jenni

>

> I want to thank all of you too! I really enjoyed reading all about your

> trip and look forward to hearing more! My server is down for days at a

> time now..gee and I used to complain about hours of down time..but I

> have been coming here when I do get a connection..and just before I get

> booted...grrrr.

> Thanks for sharing!

>

>

>

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

> As Deb has said: " Fitness is a journey and it begins with the first step. "

> Visit our new vault site http://taeboon.isportsdot.com/

>

[Guest guest]

I wanted to thank everyone who went to the tapings for sharing your

expeience while you were all there. Makes me want to go to a live taping

now!

Re: Thank you!!

> nesteabe-@... wrote:

> original article:tae-bo_on/?start=13097

> > I would like to thank you all, , , , Elena, Patti

> ,

> > and what's her name... oh Susi for the GREAT postings!! They were

> LONG

> > and detailed... just like I like. I know you all are exhausted so

> it's

> > wonderful that you took the time to clue us in on all of the CA

> happenings.

> > You guys had a great time!! Wow, that is just so cool. For the

> record I

> > only pick on Susi because she's a fellow Minnesotan... she knows I

> would

> > never forget her name.

> >

> > Jenni

>

> I want to thank all of you too! I really enjoyed reading all about your

> trip and look forward to hearing more! My server is down for days at a

> time now..gee and I used to complain about hours of down time..but I

> have been coming here when I do get a connection..and just before I get

> booted...grrrr.

> Thanks for sharing!

>

>

>

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

> As Deb has said: " Fitness is a journey and it begins with the first step. "

> Visit our new vault site http://taeboon.isportsdot.com/

>

[Guest guest]

I, too, want to add my sincere thanks for those that shared their

experiences. It makes me really want to go and I hope some day I can.

You are a great group of people and to meet you in person would be THE

best. Doing Taebo all together would be pretty neat too. Thank you!

You gave us a moment where we were there with you guys at least in our

minds! le

[Guest guest]

---

*HUGS* Thanks for posting what you did Caer about the mood

diosorders. I think you helped many of us when you speak up about it.

It made me feel I am not alone in having bipolar. This group is so

fun and supportive, I am sooo addicted to coming here lately. This is

the best support group out there, for women, and for BFL.. Can't

think of a better place except for my Lifehouse message board I go

too. They are all just as nice. (Lifehouse is my favorite band incase

you haven't heard, but I am sure you will if you hang out here long

enough!) Glad you are here!

Kathi (who's just another name)

In , " lady_caer_ak

<lady_caer_ak@y...> " <lady_caer_ak@y...> wrote:

> I just want to tell you all that I am so glad that I have you all

to

> talk to. I have gone to " support group chats " and other weight

loss

> groups in the last few days just for the added support (my theory

> is/was you can never have to much support) any way I can't tell

you

> how bad these other groups made me feel! I encountered so many self

> centered and negative people that just tried to pull me down that I

> realized how incredible you ladies really are! Thank you so much

> every one of you for all you love and sharing.

> Caer

[Guest guest]

Hi

My daughter, Jackie 6, has Syst. poly.Jra. We fly once a year from Norway to Hawaii. thats 3 long flights of between 6 and 9 hours each.

Jackie gets stiff from sitting still for too long. On the flights where you sleep it's hard for her to sit and sleep. She will cry in her sleep and mowe around so I try to get an extra seat for us so that she can lay down and have her feet on my lap. She fainted in new York on the way to Hawaii last summer and went all yellow. They would almost not let us go on the flight and we didn't know weather we should just stay in New York and let her rest. It turned out that her lymfs were swollen and that she had a flue but we had not noticed because she didn't complaine about not feeling ok since she was on Ibuprofen and didn't feel anything.

If I would fly with a Jra child I would try to fly during daytime, find flights maybe offpeak so that there might be a chance to get an extra seat and try to have a couple of hours in transit in between changing flights so I have time to get her some food and just have her mowe for a while. Also let the child mowe around on the airplane. I think that helps them. the mental stress of travelling can sometimes cause a flare so I try to plan things long in advance so that i don't stress out about being late packing, hurring to the airport and so on.

Good luck and have a nice time in London.

>From: "hburger64"

>Reply- > >Subject: Thank You!! >Date: Wed, 04 Jun 2003 20:07:15 -0000 > >Dear List, > >Thank you for all the input I received yesterday, you are truly a >wonderful support group. From my further reading and your replies, >im pretty sure my son has systemic JRA. Of course, im no doctor and >we will have to wait till we see the specialist. I must say though >that although i wouldnt wish Nick to have this, it is reasuring that >we might finally get an answer to whats been ailing him for over 2 >months and be able to move on from there. > >I have a call into our ped as we still have not heard about our >referral and i want to get this taken care of ASAP. We are leaving >in 6 weeks for a month in London and I really want to have a handle >on whats wrong with Nick before we leave the country. > >I do have a couple of questions. Nick came home from Kindergarten >yestereday ( its only 1/2 days here) and I had to carry him off >the school bus, as his "legs hurt him" he then laid on the sofa for >3 hours before going to play and seemed ok after resting. I found >out today that they did a lot of running in school yesterday. Is >this pretty typical?? he had no temp yesterday. > >My 2nd question pertains to flying... does it bother kids with JRA >to fly?? I know this might be a dumb question, but remember im a >newbie to all this and im still learning. > >Again, thanks for all the support, what a wonderful resource. > >Helen and 5 > > The new MSN 8: smart spam protection and 2 months FREE*

[Guest guest]

:(great name by the way, it's my middle name!)

Saying " Thank goodness it was only the meds that got stolen " would be like

telling a quadrapaligic " thank goodness it was only your wheelchair! " or a

blind person " Thank goodness it was only your guide dog! " .

Glad to hear you got them refilled though, and good on you for changing your

locks!

Love and light

Crystal

>From: " bearsyisalady " <heatherfitz@...>

>Reply-

>

>Subject: [ ] thank you!!

>Date: Tue, 23 Nov 2004 03:23:51 -0000

>

>

>

>I wanted to thank all of you for your kind words and support last

>week when I posted about my meds being stolen. I was finally able

>to get all of them re-filled and the locks on the doors changed. I

>find it ironic that most people I have spoken with (who don't have

>PA) tell me how " lucky " I was that nothing " valuable " was stolen.

>While I am grateful that I am not replacing my television or

>jewlery, it makes it all the more clear to me how much you all do

>understand. By taking the drugs I am able to take care of my

>children, work, and live a somewhat normal life. You guys

>understand how valuable that is, and not one of you told me to be

>grateful that my medication was all they took. THANK YOU!

>

>

[Guest guest]

As far as congenital goes and affecting other organs, I can't

answer that question. There are moms on here whose children have

congenital and best I can tell that is caused by more of a

structural abnormality with the spinal bones/vertebrae. Again, don't

take my word on that, as Lexi has idiopathic and they don't have a

clue what causes it. Someone will answer your question though, rest

assured.

The RVAD stands for Rib Vertebrael Angle Difference I almost

positive of, and that was developed by Miss Mehta I believe as a way

to measure the curve and therefore determine if it is progressive or

non-progressive.

When I wanted to speak to Dr. Sander's directly before we went out

for our 2nd appointment in August, which was when Lexi got casted, I

simply called and spoke to , who is Dr. Sander's

patient coordinator. I asked her if I could speak with him directly

and about an hour later, he returned my call. I am not sure who that

contact person would be for Dr. Khoury, but you could call the

hospital and ask the operator to put you in touch with his nurse

perhaps, and they would be able to help you. What I have been most

impressed with as far as that entire staff out there is that they

are all very nice and willing to assist and make things very easy. I

have not met an unkind or unprofessional person there yet.

Do not think for a minute you are not strong and in control of this

situation......you have gotten this far and that is a great

place to be. I have only been on this site since January and I will

tell you there are some amazing moms on this board. The way I handle

this is to tell myself, " This is my reality and Lexi's reality.

Don't dwell on what cannot be changed, but arm yourself with the

knowledge to get the treatment that is best for your child done. "

I was a basket case when I came to this site, because our ortho

here in Houston at Texas Children's is a complete moron....head of

the ortho dept. at Texas Children's...head professor of ortho at

Baylor College of Medicine and he told us to wait until she was

older and have surgery. I can't tell you how many verbal wars he and

I have had, and I've actually been escorted out of his office by

security once!! LOL It was all for the sake of my daughter and what

is best for her though. You will come through this intact and

will come out of intact.

Try to get in touch with Dr. Khoury if you can and explain your

concerns though. You will probably still end up in Erie for a

consult/ and or cast depending on what he feels is best of course.

And know that you always have us to turn to for support! We are all

in this together.

Tracey

> Tracey,

>

> Our Ortho told us it was not congential after doing the MRI. I

really

> do not know what congential means. I think he tried to explain it

as

> that the scoliosis would be affecting other organs if it was

> congential. Is this correct??

> Also, I have seen postings about RVAD or something. Is that

something

> to do with the degree of the curve?? I just wish I could meet Dr.

K

> and ask these questions before the Oct. 20th body cast

appointment!!!

> Do you think I should try to call and speak with Dr. Khoury?? I

know

> I will definately email .

> Thank you soo much for replying. I have read alot of the messages

and

> everyone seems sooo strong and in control. Two things I hope to

gain

> from this site. Thanks Again, Sue

[Guest guest]

Sue, email me privately and I can give you Dr. K's email address. noellesmommy@....

Also, congenital means there are structural reasons for the scoliosis like hemivertebrae. It is good that it is idiopathic in terms of casting.

Noelle (12-2-01)Ian (8-15-04)

Thank you!!

Tracey,Our Ortho told us it was not congential after doing the MRI. I really do not know what congential means. I think he tried to explain it as that the scoliosis would be affecting other organs if it was congential. Is this correct??Also, I have seen postings about RVAD or something. Is that something to do with the degree of the curve?? I just wish I could meet Dr. K and ask these questions before the Oct. 20th body cast appointment!!! Do you think I should try to call and speak with Dr. Khoury?? I know I will definately email .Thank you soo much for replying. I have read alot of the messages and everyone seems sooo strong and in control. Two things I hope to gain from this site. Thanks Again, Sue

[Guest guest]

Hey Tracey,

You are a legend!!!! i can't believe you were escorted out by security! You are my hero. I have been told I was unethical in "shopping around for treatment for my daughter" by the head ortho in our city (Brisbane Aus) and I have been refused treatment by another ortho because I had chosen to look elsewhere for treatment for my daughter but I have never actually been removed by security. Wow! Good on you mate.

You are quite right in saying we are really the only people with our children's best interests at heart and without the research and knowledge you just don't know what questions to ask. However other mothers are the people to look to as they understand your frustration and can give great advice.

Have a great week.

Bertth77381 <pthahn@...> wrote:

As far as congenital goes and affecting other organs, I can't answer that question. There are moms on here whose children have congenital and best I can tell that is caused by more of a structural abnormality with the spinal bones/vertebrae. Again, don't take my word on that, as Lexi has idiopathic and they don't have a clue what causes it. Someone will answer your question though, rest assured. The RVAD stands for Rib Vertebrael Angle Difference I almost positive of, and that was developed by Miss Mehta I believe as a way to measure the curve and therefore determine if it is progressive or non-progressive. When I wanted to speak to Dr. Sander's directly before we went out for our 2nd appointment in August, which was when Lexi got casted, I simply called and spoke to , who is Dr. Sander's patient

coordinator. I asked her if I could speak with him directly and about an hour later, he returned my call. I am not sure who that contact person would be for Dr. Khoury, but you could call the hospital and ask the operator to put you in touch with his nurse perhaps, and they would be able to help you. What I have been most impressed with as far as that entire staff out there is that they are all very nice and willing to assist and make things very easy. I have not met an unkind or unprofessional person there yet. Do not think for a minute you are not strong and in control of this situation......you have gotten this far and that is a great place to be. I have only been on this site since January and I will tell you there are some amazing moms on this board. The way I handle this is to tell myself, "This is my reality and Lexi's reality. Don't dwell on what cannot be changed, but arm yourself with the knowledge to get the

treatment that is best for your child done." I was a basket case when I came to this site, because our ortho here in Houston at Texas Children's is a complete moron....head of the ortho dept. at Texas Children's...head professor of ortho at Baylor College of Medicine and he told us to wait until she was older and have surgery. I can't tell you how many verbal wars he and I have had, and I've actually been escorted out of his office by security once!! LOL It was all for the sake of my daughter and what is best for her though. You will come through this intact and will come out of intact. Try to get in touch with Dr. Khoury if you can and explain your concerns though. You will probably still end up in Erie for a consult/ and or cast depending on what he feels is best of course. And know that you always have us to turn to for support! We are all in this together.Tracey> Tracey,> > Our Ortho told us it was not congential after doing the MRI. I really > do not know what congential means. I think he tried to explain it as > that the scoliosis would be affecting other organs if it was > congential. Is this correct??> Also, I have seen postings about RVAD or something. Is that something > to do with the degree of the curve?? I just wish I could meet Dr. K > and ask these questions before the Oct. 20th body cast appointment!!! > Do you think I should try to call and speak with Dr. Khoury?? I know > I will definately email .> Thank you soo much for replying. I have read alot of the messages and > everyone seems sooo strong and in control. Two things I hope to gain > from this site.

Thanks Again, Sue

Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

In a message dated 3/1/2006 1:50:13 P.M. Eastern Standard Time,

mrlbrinks@... writes:

I have been told that Cole is not a

candidate for it because IgA is untreatable via the IVG.

Rogena, Cole may be a canidate for IVIG! In your signature you say he is IGG

subclass def. Start by finding a good immunologist. Give the IDF a call.

Janet mom to Brittany CVID age 15

[Guest guest]

In a message dated 3/1/2006 1:50:13 P.M. Eastern Standard Time,

mrlbrinks@... writes:

I have been told that Cole is not a

candidate for it because IgA is untreatable via the IVG.

Rogena, Cole may be a canidate for IVIG! In your signature you say he is IGG

subclass def. Start by finding a good immunologist. Give the IDF a call.

Janet mom to Brittany CVID age 15

[Guest guest]

Unfortunately, I have been told that Cole is not a

> candidate for it because IgA is untreatable via the IVG.

Welcome to all the new people in the group. A lot of times I post an

answer in response to one particular question -- but the beauty of this

group is that we are all listening and learning together. So, don't

ever think that you shouldn't read someone else's reply. And please ask

questions if there's anything that you don't understand.

Rogena -- welcome to the group. You are exactly right -- IVIG would not

treat for low IgA. But, in your earlier post you mentioned that he is

missing one subclass of IgG and that could be a problem and THAT is

treatable.

IVIG or SCIG only replaces the IgG. If your child is missing one of the

subclasses of IgG, or it is low, and that is affecting their health,

then IVIG or SCIG is the recommended treatment.

This is from a National Survey of Patients and Specialists done by IDF

in May 1999. It shows the change before and after IVIG.

Sinusitis 68% before 65% after

Sepsis 5% before 4% after

Pneumonia 51% before 27% after

Meningitis 4% before 2% after

Malabsorption 9% before 8% after

Ear Infection 51% before 27% after

Diarrhea 30% before 24% after

Cancer 2% before 2% after

Bronchitis 55% before 40% after

Only hepatitis and arthritis increased slightly because yes, there was a

strain of hepatitis that was totally unknown until it was discovered and

several patients received contaminated blood because it was an unknown

virus. (We believe that there is a much greater chance that this will

not happen again because of the improved purification of IVIG). And

arthritis increased because it is a disease related to age -- so as

patients aged, they reported more arthritis consistent with the general

population so not affected by IVIG.

So, you can see why we highly recommend IVIG if it is necessary. That's

because it is effective!

Many people with low IgA are not clinical ill -- some are. No one knows

yet what causes that. But a few years ago when the IgG subclasses were

discovered they found that most (but not all) people who are clinically

ill with IgA deficiency -- also have a subclass of IgG missing. When

they started treating those people with IVIG, they discovered that it

greatly lowered their incidence of infection even though they continued

to be low in IgA.

IgA deficient people really have no treatment option if their IgG

subclasses are good and they are building the proper antibodies. I

would think that the next test that they should be looking at for your

son is whether or not he builds response to vaccinations. Have they

done that?

I definitely recommend that you contact the Immune Deficiency Foundation

at 1-800-296-4433 and ask them for a recommendation to a Clinical

Immunologist who is up on the latest research. I don't know where you

are located, but if you want to give a general area, there might be

someone on this list that could tell you of a good immunologist in your

area. (While you are on the phone with IDF also order their Patient and

Family Handbook and get on their mailing list to receive information).

I am concerned about your not getting in to see doctors who really know

about Primary Immune Deficiency. The research on this is changing daily

and if your doctor is not familiar with the newest research, you may not

receive the best of care possible for your child. Now, that said, if

you have a doctor that you really trust and he/she is willing to learn,

then they can contact IDF and get their material for physicians and

their newsletter so that they can learn about PID. There is also a free

Consulting Immunologist program that your doctor can call for a free

consultation with a leading Immunologist specializing in PID. That

number for your doctor (they won't talk to moms!) is 1-877-666-0866

Sad but true: When the doctors told me 9 years ago that my daughter had

CVID, we had no idea what that was and where it would lead us. My

husband and I rushed to Stanford's medical library to research and found

that she had a 2 year life expectancy. That there was a new treatment

called gammaglobulin but it wasn't recommended because it was a

" experimental " treatment. The only problem was: THAT WAS WRONG!

That information was 10 years old. It takes FOREVER for new research to

make it into medical textbooks. We didn't know that -- and we worried

needlessly about so many things. When we finally saw an Immunologist

who knew what she was talking about we had a hard time believing her --

but through the years we've realized that old information can kill you!

That's the primary reason this group exists. Ursula asked me if I

wanted to be a part of something that would give newly diagnosed

patients (Moms and Dads) a place to ask question and I jumped at the

opportunity. I don't want you to be given " old " or " bad " information.

The research is changing daily. Make sure that you get to a doctor who

has the most recent information.

Hope that helps, and welcome to all the newcomers here.

So, ask questions and learn all you can to fight for your child. And

yes, that's a Mamma's job. I kept fighting until I found a pediatrician

I could respect and trust. She learned everything she could about CVID

and it really took the stress off of me. Keep looking for a doctor who

will listen and really hear you.

Hope that helps someone!

In His service,

dale

[Guest guest]

Awww thanks. You made me get a big grin on my face. Thanks for sharing. I am so glad you are doing better - that is the most important thing.

To your health!

Steph

Re: Iodine and Tamoxifen>>> Why would both T4 and TSH increase? This seems paradoxical to me.>> Lynn>>> I am trying to locate this article but it appears that Iodine andTamoxifen do not mix. I will run this by Dr. Brownstein too.>> Antithyroid action of tamoxifen in the rat: in vivo and in vitrostudies.> Beyssen M, Lagorce J, Clédat D, Jambut A, Buxeraud J.> Department of Organic and Therapeutic Chemistry, Laboratoire de Chimiedes Substances Naturelles, Faculty of Pharmacy, Limoges, France.>> The influence of administration of tamoxifen (TAM) on thyroidmetabolism was investigated. The potential action of TAM on iodine inthe thyroid gland was evaluated by determination of the equilibriumconstant of the charge transfer complex formed with molecular iodine andby computational studies. Adverse effects of TAM on thyroid functionparameters were also investigated in female Wistar rats. Rats weretreated for seven weeks with 5 mg/kg/day of TAM. Irrespective of theiodine content of the diet, administration of TAM led to goitre and asignificant increase in levels of T4 and TSH. Similar results, albeitmore marked, were observed after administration of an inhibitor ofthyroid peroxidase. We also showed that TAM forms charge transfercomplex with iodine (Kc = 876 liters/mol). We concluded that under ourexperimental conditions, TAM exerts antithyroid activity from an actionon thyroid peroxidase. Nevertheless, when the exogenous iodinecontribution is restricted, TAM may sequester iodine in the form ofcharge transfer complexes, thereby enhancing hypothyroidism. Copyright2000 S. Karger AG, Basel> http://www.ncbi.nlm.nih.gov/pubmed/10895077> >------------------------------------

[Guest guest]

DEAR INGRID, DEAR GUNN,

THANKS A LOT FOR YOUR HELP, AND YOUR INTEREST!!

I AM SURE NOW, THAT IS A GOOD IDEA TO START LDN IN MY HUSBAND, I HOPE GOD WILL BLESS US GIVING IMPROVEMENT TO MY HUSBAND HEALTH!!!

TELL ME SKIP PHARMACY, IN BOCA RATON, HAS A LOT OF EXPERIENCE IN LDN? DO YOU THINK IS GOOD IDEA TO START WITH 2.MG FOR 2 WEEKS AND THEN INCREASE UNTIL 4.5MG???

AS I TOLD YOU BEFORE, MY HUSBAND HAS 4 YEARS FROM DIAGNOSED, 6 FROM THE DESEASE ONSET. HE DRIVES HIS CAR, HE PLAYS TENNIS, HE CAN SWIM, AND HE CAN GO WALKING FOR 40 MINUTES, NO FATIGUE, HE WORKS, HE SLEEPS ONLY 6 HOURS. BUT HIS SPEECH IS BAD, HIS DYSPHAGIA HAS UPS AND DOWNS, WHEN HE DOES A LOT OF THERAPHYS , AND EXERCISES FOR HIS SWALLOWING AND BREATHING, IT IMPROVES, WHEN HE STOPS THE THERAPY IT STARTS TO GET WORSE, AS YOU KNOW THIS KIND OF DESEASE HAS DIFFERENT ONSET IN ALL ITS VICTIMS, SOME PEOPLE HAD VERY FAST PROGREESION OF THE DESEASE, SOME NOT.

I AM A RECENTLY GRADUATE NUTRITIONIST , AND I THINK , THAT THE NUTRIONAL ASPECT HAS HELP MY HUSBAND VERY MUCH!! IF SOMEONE WITH ALS, WANTS TO NOW ABOUT HIS REGIMEN, DO NOT DOUBT IN EMAIL ME, I WILL SHARE WITH THEM MY HUSBAND NUTRITIONAL PRINCIPLES.

GOD BLESS YOU

MARITA

From: Gunn Dybfest

Sent: Saturday, October 11, 2008 6:11 PM

low dose naltrexone

Subject: Re: [low dose naltrexone] Late Breaking News: Expert in Clinical Immunology to Speak at LDN Conference

Hi Marita,

I have copied and pasted some saved posts:

1. post: Weeks ago I ask the group if LDN really works for ALS, because I was going to talk about it to a friend that was doing nothing for his illness.Now he has 4 days taking it and his breathing has improved a lot, he is talking faster, he is sleeping all night(he had almost 2 years waking at 2-3am), he take naps during the day, a total outcome.I feel great for him and because I put LDN on his road.Thanks to you all for your advices Guill.

2. post: I know of several people with ALS for whom LDN made a significant difference, slowing their progression and making them feel stronger. However, I also know of some who it didn't seem to help, which I guess is not surprising given how nasty ALS is and how quickly it can progress. Given the low cost and minimal/no side effects I'd be tempted to keep on using it anyway.Alternatively, if for peace of mind you'd like to know whether it really is making a difference or not, then ensuring you have at least enough left to last you until you can get another order of it in stop taking it for a while. If you start feeling worse get back on it immediately. If you notice no difference then you know.The only thing I'd suggest is do everything you can to rule out Lyme disease as that can mimic ALS and typically does not respond to LDN, hence could be the real reason the LDN doesn't seem to be working.Gar3. post: It definitely can be of help with ALS - see http://www.low dose naltrexone.org/others.htm#PLS2007 I know of a number of people who have been helped significantly both symptom improvement wise (a bonus!) and progression wise. That said, it is a mongrel of a disease and for some the LDN doesn't seem to help unfortunately. Can't help with a doctor but email Crystal (angelindisguise67 at ).

4.post: I have ALS and have been on LDN for 4 months. LDN helped greatly with my fatigue. I will continue to take it because I have had no side effects, and I feel better on it. My ALS symptoms continue to increase slowly. The LDN costs me $40 a month. Don't give up the fight!!

5.post:

Regarding LDN and ALS. I was diagnosed in 2001 with RRMS. My neuro recommended Copaxone. Did my own research, and decided on LDN. After about six months of use, about 95% of MS affects were gone. I started in May of 2002. I lead a very normal life until Sept. of 2007. Started having new symptoms. Early stages of ALS. Methodiost-Houston has confirmed that I never had MS. My symptoms in 2001 were probably ALS, as there is no other explanation for them. My ALS has progressed, have lost the use of my left arm and have severve dysphagia. Can no longer talk clearly. I am still taking the LDN, and will not stop. The ALS clinic at MEthodist-Houston has taken an interest in my story, and wonder if this is why I was symptom free for 5+ years. In my opinion, trying LDN for ALS could not hurt. What do you have to loose. 6 years on LDN, and all i have gotten from it is a signifigantly better quality of life. No side effects, no problems caused by it. Hope this helps. Email if I can be of assistance.

Ingrid

[low dose naltrexone] Late Breaking News: Expert in Clinical Immunology to Speak at LDN Conferencelow dose naltrexoneDate: Saturday, October 4, 2008, 12:01 PM

Aristo Vojdani, PhD, will be joining the scheduled presentation by Dr. Jaquelyn McCandless at the Fourth LDN Conference on October 11th in L.A. His subject will be "Mechanisms Associated with Low Dose Naltrexone Therapy in Autism and HIV".

Dr. Vojdani obtained his Ph.D. in the field of microbiology and clinical immunology, with postdoctoral studies in tumor immunology. He is a member of the editorial board of three scientific journals, and has published more than 110 scientific articles. He is CEO and Technical Director of Immunosciences Lab., Inc. in Beverly Hills , CA .

Get more out of the Web. Learn 10 hidden secrets of Windows Live. Learn Now