New here

October 24, 2008

le,

I hope things improve quickly for Issabella. It often takes a while for the

medication to kick in and do the job it is intended to do. Also it often takes

trying more then one medication before they find one that works. Unfortunatly it

seems that the doctors often want to wait up to six weeks or longer before they

determine that one med is not working. The fact that you have to change doctors

after just getting the diagnosis may not help much either. Be sure to take all

your records with you and try to schedule an appointment now for when you will

get moved. Don't wait til you get moved and settled to try and call to fnd a

rheumy. I don't know how it works in the military but assume that you have to

use only military doctors unless they do not offer what you need. So I will pray

that the military will have a good one for you in Georgia. If not, then you need

to talk to Robbin on this list and she will probably have more information for

you then you really want. I also have no clue how close Augusta is to Atlanta. I

dont have a map handy to look at and have only been to Georgia once. But Robbin

is in the Atlanta area and she is always very eager to help anyone.? I am sure

you will see a post from her since you mentioned that you are moving to Georgia.

You will have to be patient as you travel this road with JRA. But you will also

have to be very determined and stubborn to get what you need for your daughter.?

Good luck.

Veri & Jaye 14 poly

New Here

Hi everyone! My name is le and I am a mom to a 22 month old

daughter. Her name is Isabella Leilani and she was diagnosed with JRA

in July. It sure has been a frustrating road coming as when we first

wanted to know what was wrong with Isabellas walking and bent stiff

leg. The doctors at Tripler Army Medical center did blood

work,ultrasounds and xrays only to say there was nothing wrong with

her. I know this wasnt so .... So I made the decision to move home to

San with ISabella to take her to the Army hospitals here. She

was diagnosed with JRA. Her diagnoses is still some what new and all

I know is that she has it. I dont know any information really and the

doctors dont seem in a rush to see her more often. Isabella is going

to physical therapy twice a week. In the beginning it was going great

and we have seen a 50% improvement from the beginning. Unfortunatly

now that it is geting cold she is not compliant at physical therapy

which is frustrating to hear her screaming bloody murder due to the

pain.

She does take naproxin twice a day but it doesnt seem to be helping

with the pain. We had an appt on the 30th of this month but I called

today to see if we can get in sooner and we can on thursday. I hope

to find out more information through this group and my doctor. This

will be the second and last time we will visit with this

rhuematologist as we are pcsing to Augusta Georgia at the end of

November. I have rambled enough!

I am a full time mom, student, wife and best friend! Life is hectic!

*laughs*....

October 26, 2008

Hi , I have a son, 19 yrs, who was diagnosed in 8th grade with

HFA/Aspergers. He is a twin, not identical. The twin is " typical. "

Your note reminded me of my Aspie some. Now he did, with twin, begin

to speak around average time but they never developed the speech

well. They were " pointers " , preferring to point to things, etc. I

had an older child, almost 4 when they were born, who was " typical "

too and he had attended childcare from 8 weeks old and

progressed " normally. " With the twins, my mom kept them while I

worked (I left their dad when they were 2 months old). Anyway, my

Aspie () always seemed to be a couple months behind his twin

in developing skills like sitting up, crawling, beginning to climb,

etc. As he got older, he did seem to have motor skill problems.

Unlike you, I didn't know about things like early intervention

services, etc. To shorten this a bit, LOL, neither twin seemed to

want to begin to progress in talking until they were around 3 yrs.

And then their " articulation " wasn't good, but I had been that way

also and had had speech therapy, so figured it was just " in the

family. " Really, no one could understand either of them, I called

their speech " jibber-jabber. " My mom said my dad apparently didn't

speak until around age 3 either.

So - elementary school. really behind in motor skills, the

fine and gross ones. Very smart kid though, did well at all the

learning. Had done well at home with learning too, just seemed

behind in other ways. I never could " put my finger on it " but he

just seemed " off " in some ways.

Later on as I learned of Aspergers and the more " mild " type autism, I

used to think occasionally that had some of the " traits " but

probably not enough for a diagnosis.

It seemed to stand out more in middle school to me, all the daily-

living type skills he still seemed to lag behind in although he

excelled at school. (not socially though, just in grades/learning)

This could get really long, LOL, he's 19, but fast-forward: he began

to gain much more ground in high school, even socially, although he

never had friends to hang out with outside school. Now he's in his

2nd year of college, still plans a career in medical research (has

almost always said he wanted to be a scientist). He is treasurer of

both the Science Club and the Student Government Association at his

community college and plans to transfer to a university next year.

There are still " problems " in areas, like I do worry about his

getting his driver's license, I think he would do okay in our small

type city, but never a larger one and I don't plan for him to drive

back/forth to university (will try for his license soon). He doesn't

seem to have initiative to do the everyday needed tasks (e.g.,

cleaning, laundry...) so I wonder about what will he do at college??

And I wonder about initiative/ability to be on his own later, after

college. So there are still a few things I worry about but overall

he is doing fine but I don't like to underestimate him, he has

surprised me at times when I've tended to.

Know this got a little long but still so much left unsaid. I would

work on his motor skills, there are fun ways to do this too. And

work on self-help skills. But don't push too hard, frustration will

just slow them down I think. It was 3rd grade...4th? before he

learned to tie his shoes, learned to cut better with scissors, 5th

grade riding a bike (didn't do that much at all, but finally

learned).

Welcome to the group!

>

> Hi all,

>

> I thought I'd introduce myself. My name is and I have 2

> little ones with one scheduled to arrive via scheduled c-section on

October 30, 2008

Hi le,and welcome to the group. My name is Lani, and my daughter

is 2 and has ANA+ Poly JRA. I just wanted to say hello, and hang

in there sweetie. It took so long for the doctors to get my daughters

disease under control, but she is walking now, and hasn't had a flare

or contracture in 4 months. Stick to your guns and instincts as you

have been. I pray they find the right combo for your little one. I

know how heart breaking it is to see them suffer and not be able to

move. started on Methotrexate in addition to the Naproxen a few

months back, and it has made ALL the difference. I was so scarred to

put her on such serious meds, and she wasn't even two yet. I know its

all scarry, but the meds really really help. Best wishes to you and yours,

Lani

>

> Hi everyone! My name is le and I am a mom to a 22 month old

> daughter. Her name is Isabella Leilani and she was diagnosed with JRA

> in July. It sure has been a frustrating road coming as when we first

> wanted to know what was wrong with Isabellas walking and bent stiff

> leg. The doctors at Tripler Army Medical center did blood

> work,ultrasounds and xrays only to say there was nothing wrong with

> her. I know this wasnt so .... So I made the decision to move home to

> San with ISabella to take her to the Army hospitals here. She

> was diagnosed with JRA. Her diagnoses is still some what new and all

> I know is that she has it. I dont know any information really and the

> doctors dont seem in a rush to see her more often. Isabella is going

> to physical therapy twice a week. In the beginning it was going great

> and we have seen a 50% improvement from the beginning. Unfortunatly

> now that it is geting cold she is not compliant at physical therapy

> which is frustrating to hear her screaming bloody murder due to the

> pain.

>

> She does take naproxin twice a day but it doesnt seem to be helping

> with the pain. We had an appt on the 30th of this month but I called

> today to see if we can get in sooner and we can on thursday. I hope

> to find out more information through this group and my doctor. This

> will be the second and last time we will visit with this

> rhuematologist as we are pcsing to Augusta Georgia at the end of

> November. I have rambled enough!

>

> I am a full time mom, student, wife and best friend! Life is hectic!

> *laughs*....

>

November 16, 2008

Welcome to the group, ! Feel free to jump in anywhere!

RoxannaYou're UniqueJust like everyone else...

( ) New here

Hi all,I thought I'd introduce myself. My name is and I have 2 little ones with one scheduled to arrive via scheduled c-section on November 24th. My oldest is 4 and his name is J.T., he has just recently been officially diagnosed on the spectrum but very high functioning. The neurologist told me that when he gets older it will be considered Aspergers. My daughter is 3 and her name is and she is a "typical" child. Most of the time people think they are twins (they are 14 months apart) but notice that J.T. is "different".I've always known that something was off when he didn't hit milestones as quickly as most other babies his age but brushed it off when everyone else told me that it was "normal" for first born boys to be a little behind. At 15 months my pediatrician recommended we go for speech therapy since he had no words, not even "Mama" or "Dadda". He also recommended we get and MRI due to his traumatic birth. The MRI came back fine and we went for private therapy to help his speech. He did not like this at all and cried and resisted therapy. Well I continued for several more weeks and when I saw that the therapist really got nowhere with him I decided to take him out. Right before he turned 2 we called Early Intervention. They came out and evaluated him and he started to receive speech, OT, and DT. We soon dropped the DT since the therapist was horrible and didn't do her job and the wait for another DT was so long. We decided to pick up more speech and OT time. I wish I could say he made great gains during this year but I didn't really notice all that much.Right before J.T. turned 3 he was evaluated for Early Childhood and qualified (that was no surprise to us). He still had no words but within the first 3 weeks of summer school (he's a late May birthday) he said "Mama" for the first time! I was thrilled. I wish I could be a fly on the wall to see what they do to get all of this out of him but I know I can't and it's probably best for me to just enjoy him coming home with all this new language and development everyday.I had been asking since he was about 1 if the pediatrician felt he could be on the spectrum. Of course I heard that he didn't see it so we'd just keep an eye on it. I should have demanded more but being a first time mom I didn't. I also asked his therapists if they saw any signs and they told me no as well. Being that I am a teacher I know that legally they can't tell you yes but they can encourage you to seek out professional opinions if they think there could be something going on. Well when it comes down to it, I asked every person that worked with J.T. whether they saw it or not. His EC teacher and therapists said that sometimes they saw it but most days they didn't. Finally, when I switched pediatricians she finally listened to my concerns and referred me to a pediatric neurologist.When we went to visit I was shocked at how fast he came to the diagnosis. Again, it wasn't a surprise but I thought they would have to do a lot of testing to get to that result. I am very pleased to have a diagnosis after feeling that there was something more than just delays but I'm still looking for more help. I'm looking for things I can do to help him get as far in life as possible. I'm concerned for next school year when he's supposed to go into kindergarten (of which I don't think he'll be ready) what's really going to happen from there. I'm looking for other things I can do in general.Well, sorry this was so long. I just thought I'd share a little of my story. I'm looking forward to getting to know you all and hearing how you are moving forward with all of this. I appreciate you taking the time to read my story.

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.8.2/1739 - Release Date: 10/22/2008 7:23 AM

November 19, 2008

What kind of band did you get?

With out seing what you are talking about I cannot say... but if you EVER have a question call you ortho!

It may be normal shifting of the bones or the band may need ot be adjusted.

Jen and Luli - almost 3 years old

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

New Here

Hi,

My 6 month old son just got his helmet on Monday. The adjustment

has gone well for the most part. My question is, it looks like a couple

of ridges has come up on the back of his head, is this normal? Thanks

in advance.

Traveling over the river or through the woods this holiday season? Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More!

November 20, 2008

Hi and welcome!!!

My first guess would be that it's his cranial sutures - my son's

sutures became really noticeable after a little while in the band. He

has a DOC Band, and he also get a ridge on the top of his head where

the piece in the front comes up hold the band steady - it's pretty

obviously in the shape of the band and it comes and goes - it's just

some swelling of the skin from what his therapist told me. Nothing

serious and totally normal.

Hope this helps! Good luck to you!

Jess

Mom to Luke - 5.5 months old - 6 wks in DOC Band

Mom to JT - 2 years old - beautiful naturally round head!

November 22, 2008

Hi--

It is hard to say without seeing it, but I do see somethins similar

with Merrick. There seems to be a ridge on the right side. I pointed

it out at his last CT appt. and was told that it was very normal to

have that bump and then flatness especially because it is where his

helmet comes together. She said its similar to when we wear our

wedding ring..how when it comes off there is a bump and the flatness.

She said that it will for sure go away after he is out of the band.

She said that it may take a week or it may take a month but that they

have never had anyone come back and say that it never went away.

H.

>

> What kind of band did you get?

> With out seing what you are talking about I cannot say... but if

you EVER have a question call you ortho!

> It may be normal shifting of the bones or the band may need ot be

adjusted.

>

> ?Jen and Luli - almost 3 years old

> Left tort - Right Plagio - Hanger Band Grad - CA

> http://www.babiesonline.com/babies/j/jens5th/

>

> New Here

>

> Hi,

>

> My 6 month old son just got his helmet on Monday. The adjustment

> has gone well for the most part. My question is, it looks like a

couple

> of ridges has come up on the back of his head, is this normal?

Thanks

> in advance.

>

November 22, 2008

My son had the same ridge, between the velcro closure of his band,

and it has gone away since graduating. I think it took about a month

and a half or so.

Jake-2 (DOCBand Grad 9/19/08)

Jordan-4.5

> >

> > What kind of band did you get?

> > With out seing what you are talking about I cannot say... but if

> you EVER have a question call you ortho!

> > It may be normal shifting of the bones or the band may need ot

be

> adjusted.

> >

> > ?Jen and Luli - almost 3 years old

> > Left tort - Right Plagio - Hanger Band Grad - CA

> > http://www.babiesonline.com/babies/j/jens5th/

> >

> > New Here

> >

> > Hi,

> >

> > My 6 month old son just got his helmet on Monday. The adjustment

> > has gone well for the most part. My question is, it looks like a

> couple

> > of ridges has come up on the back of his head, is this normal?

> Thanks

> > in advance.

> >

>

November 23, 2008

Thanks everyone. We are going to the Dr tomorrow for an adjustment, so I will be able to ask about that too. Thanks again!!!

November 27, 2008

Welcome ,

I'm new here too. My daughter Jemma is also 13. She has some type of

arthritis affecting her fingers, probably psoriatic. She has psoriasis

as well. Just this week I found out she has hypothyroidism and

Sjogren's. I think all these autoimmune diseases often come together.

It is so hard when it happens to your child. I will keep you in my

thoughts and prayers today.

Ruth in TN

>

> Hi all my name is and I live in Ontario Canada

>

> My daughter Meghan is heading to the Dr today. Her eyes are so sore she

> has hives ( she has excema a psorisis) her joints are killing her.

> Especially where has had a previous injury. Her knee and wrist though

> she says she is very sore. She missed school Monday.

>

> My friend and nurse talked to another nurse and said get her into the

> Dr. I have a list of blood tests that should be done.

>

> Meghan is 13 and she has Retinitis Pigmentosa a degenerative eye

> disease. I so hope she does not have a type of Arthritis but it sure

> makes sense if she does.

>

> SIGH why does it rain and pour on one child all the time.

>

> Thanks

>

November 28, 2008

Hi, . Welcome to the group. I am sorry to hear of your daughter's

struggles. I understand totally about it raining on one child. My son

(like many here) has multiple diagnoses- allergies, asthma, and the

arthritis.

There is a lot of info here. Please update us on your daughter when you

can, Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of

Sent: Wednesday, November 26, 2008 9:56 AM

Subject: New Here

Hi all my name is and I live in Ontario Canada

My daughter Meghan is heading to the Dr today. Her eyes are so sore she

has hives ( she has excema a psorisis) her joints are killing her.

Especially where has had a previous injury. Her knee and wrist though

she says she is very sore. She missed school Monday.

My friend and nurse talked to another nurse and said get her into the

Dr. I have a list of blood tests that should be done.

Meghan is 13 and she has Retinitis Pigmentosa a degenerative eye

disease. I so hope she does not have a type of Arthritis but it sure

makes sense if she does.

SIGH why does it rain and pour on one child all the time.

Thanks

November 28, 2008

So sorry to hear about Meghan. Hang in there. My name is . I have the

website www.kidswitharthritis.com. Take a look maybe some good information for

you. Can you please e-mail list of blood tests that should be done. I want to

talk more about blood tests on my site plus offer something in the future to

familys that do not have insurance. My e-mail is coachrt@...

Thank you

________________________________

From: " Tepper, Michele " <MTepper@...>

Sent: Friday, November 28, 2008 9:43:54 AM

Subject: RE: New Here

Hi, . Welcome to the group. I am sorry to hear of your daughter's

struggles. I understand totally about it raining on one child. My son

(like many here) has multiple diagnoses- allergies, asthma, and the

arthritis.

There is a lot of info here. Please update us on your daughter when you

can, Michele ( 21, spondy)

____________ _________ _________ __

From: @group s.com [mailto: @group s.com] On

Behalf Of

Sent: Wednesday, November 26, 2008 9:56 AM

@group s.com

Subject: New Here

Hi all my name is and I live in Ontario Canada

My daughter Meghan is heading to the Dr today. Her eyes are so sore she

has hives ( she has excema a psorisis) her joints are killing her.

Especially where has had a previous injury. Her knee and wrist though

she says she is very sore. She missed school Monday.

My friend and nurse talked to another nurse and said get her into the

Dr. I have a list of blood tests that should be done.

Meghan is 13 and she has Retinitis Pigmentosa a degenerative eye

disease. I so hope she does not have a type of Arthritis but it sure

makes sense if she does.

SIGH why does it rain and pour on one child all the time.

Thanks

December 19, 2008

,

Welcome! I recall that there is someone out there who treated their

Polychondritis with antibiotics. I think if you google Dr. Trentham,

who is a specialist in this treatment, eventually you will come across the

account of a patient with RP who treated herself with antibiotics and called

Dr. Trentham to tell him of her success. I remember reading it in the past.

Hope this helps. I have had enormous success with the antibiotic treatment

for my own illness after coming across this information online- and my

doctors all told me there was no hope of recovery. I am such a believer! I

was spared all of the immunosuppressant drugs and only use this. Wish you

the best of the luck! Feel free to keep asking questions if you decide to

try this treatment. This group literally saved my life.

Emma

On Fri, Dec 19, 2008 at 12:18 PM, rbblk <spartacus1_1@...> wrote:

> Hi all,

>

> My name is and I was diagnosed with a rare autoimmune disease

> called Relapsing Polychondritis (RP) about one year ago. I'm currently

> on 15mg/week of Methotraxate and recently stumbled upon information

> linking autoimmune disease to intra-cell bacteria. This has given me a

> new ray of hope as I'm not crazy about taking Metho.

>

> I have so many question along with some healthy skepticism, I'm not

> sure where to start. Is there anyone here with RP and has AP helped you?

>

December 19, 2008

Hi , There are so many people on this site and on the Roadback.org site

that will testify that they got better with antibiotics. Those toxic drugs will

kill you. I no longer believe people who have any of these so-called autoimmune

diseases should be seeing Rheumatologists. I no longer call these diseases

autoimmune because they should be called (Infectious diseases) instead. I

changed from a Rheumy to an " Infectious Disease Doctor " and he understands why I

chose antibiotics. I don't have to teach him anything or argue about why I

won't take steroids and the like. This is a great weight off my shoulders. He

ordered all the right labs right off without question. I am positive for

micoplasma pneumonae and for Ebstein Barr Virus. So, I fight it all of with

Minocin, Azythromycin, Clindamycin and Benicar. It's a long trip, but I have

lots of patience and now with this doc, I can relax knowing my antibiotics can

be ordered easily without

having to get special permission from any insurance company. If any of you are

not only fighting your disease, but also fighting your Rheumatologist, find an

" Infectious Disease Doctor " . I didn't even know there were specialists in this

category. Ironically, it was a Rheumatologist who told me he believed me, but

his hands were tied and he was unable to treat me. It was he who steered me to

the " Infectious Disease Doctor " and on the way out, he said, " I hope you prove

me wrong " and get well. I feel sorry for Rheumies who must keep on treating

with steroids because this is what they were taught in school and they must

follow protocol. They are at least 50-60 years behind. Antibiotic Protocol has

gotten a bad rap from them. I think they fight it because if they can't treat

with Steroids, they will be out of a job. And the Pharmaceutical companies who

make Enbrel, Remicade, Prednisone, Methotrexate and the likes would go out of

business.

It's a shame that our health care system is in it for the money instead of for

the health of the nation. No wonder, we are in the mess we are in. Let's hope

this New Year, we will have the breakthrough we have been looking for. There is

no doubt in my mind that antibiotics is the only way to go. Happy Holidays to

all, Dolores & Mike

> Hi all,

>

> My name is and I was diagnosed with a rare autoimmune disease

> called Relapsing Polychondritis (RP) about one year ago. I'm currently

> on 15mg/week of Methotraxate and recently stumbled upon information

> linking autoimmune disease to intra-cell bacteria. This has given me a

> new ray of hope as I'm not crazy about taking Metho.

>

> I have so many question along with some healthy skepticism, I'm not

> sure where to start. Is there anyone here with RP and has AP helped you?

>

December 20, 2008

Dolores,

To look for an Infectious Disease specialist instead of a Rheumatologist is

a great idea. Overall, Rheumatologists have not only not been helpful to

us, but even detrimental. I just have been dealing with a naturopath and

family doc who are prescribing abx for me, but I have " just " RA, kept well

in check with AP, whereas many people on this list have complicated

illnesses that need more medical care. Good suggestion!

Take care,

Ute

December 20, 2008

Mike, Delores, and Emma,

Thanks for all your thoughts. I've ordered the " New Arthritis

Breakthrough " which will hopefully answer some more of my questions.

Is the theory behind all this that ALL autoimmune diseases are really

just infectious, OR that some infectious diseases mimic autoimmune

disease? For instance, I know that Lyme disease it the great

mimicker. If it is the latter, than it seems like having a full panel

of testing would be very important, otherwise AP could be useless. If

the former, than this raised my skepticism a little more because it

wouldn't explain why a stem cell transplant which effectively

replaces one's immune system will put a patient into remission, or

why T-cell vaccines work.

Anyway, maybe it's not important and if AP works even if the exact

mechanism is not known it really doesn't matter.

I'm so exhausted with study in the past year. One thing I've learned

is that you have to be your own advocate...and I realize that. But,

quite frankly from what I've read so far it seems like AP is much

more complicated—if you want to do it right—than traditional

treatments because there are a whole spectrum of diseases that one

needs to be tested for and then treated with the appropriately ABXs

and dosages accordingly. Are there Doctors out there that I can trust

to leave this all to them without having to spoon feed them and

double check everything? I've heard some good things about Dr. Franco

in CA.

Am I making this out to be more complicated than it is, or do you all

just get on Minocin without any specific infectious disease and

microplasma testing?

Thanks for your help and patience with me.

>

> > Hi all,

> >

> > My name is and I was diagnosed with a rare autoimmune

disease

> > called Relapsing Polychondritis (RP) about one year ago. I'm

currently

> > on 15mg/week of Methotraxate and recently stumbled upon

information

> > linking autoimmune disease to intra-cell bacteria. This has given

me a

> > new ray of hope as I'm not crazy about taking Metho.

> >

> > I have so many question along with some healthy skepticism, I'm

not

> > sure where to start. Is there anyone here with RP and has AP

helped you?

> >

>

December 20, 2008

Hi ,

not everyone is on Minocyn. I am taking Biaxin do to the problem I had with the

sinus, I am now on both Minocyn and Biaxin, alternating days, per my doctors

recommendation. I have a doctor here in Texas, but as Dolores already said, you

may want to find an infectious disease doctor and see if he could help you. Most

of us are open to help where we can get it.

Stay well,

Eva

From: rbblk <spartacus1_1@...>

Subject: rheumatic Re: New Here

rheumatic

Date: Saturday, December 20, 2008, 1:58 PM