New here

December 28, 2005

Welcome 2 the joint boards Judy~ sorry I can't help ya with the knee experiences as I'm a hip patient. There are several that can though & I'm sure will soon start posting to ya. You'll do fine sweetie... just keep reminding yourself you've made a well informed health choice in hopes of a better quality of life, say your prayers and things will be as they are meant to be. The worst part of any of it in my view is the waiting. It'll pass quicker if you keep yourself occupied. Best of luck 2 ya~

December 29, 2005

Hi Judy,

I just wanted to say that I read about this guy in his 30's had both his knees replace and it didn't work out for him he couldn't bend his knees and was afraid to have another operations I never heard anymore about him .

I had my right Hip and right knee replacement done I think my knee is better then my Hip I need my left knee done but won't do it because of the way my right side feels .Well I wish you the best of luck and have a Happy New Year.

Susie

-------------- Original message -------------- From: "Judy Wade" <judywade109@...> Hi everyone, I'm new here. Thought maybe I could hear some of your experienceswith replacement. I'm scheduled for double knee replacment in Marchand I'm a nervous wreck. thanx, Judy

December 29, 2005

Hi Susie, Thanks for that encouraging story about the guy in his 30;s with a double knee replacement. Just what I needed at 2:27 AM Wish I could go back to sleep!! Take care, now. Charlotte in CTjuneflower60@... wrote: Hi Judy, I just wanted to say that I read about this guy in his 30's had both his knees replace and it didn't work out for him he couldn't bend his knees and was afraid to have another operations I never heard anymore about him . I had my right Hip and right knee replacement done I think my knee is better then my Hip I need my left knee done but won't do it because of the way my right side feels .Well I wish you the best of luck and have a Happy New Year. Susie -------------- Original message -------------- From: "Judy Wade" <judywade109@...> Hi everyone, I'm new here. Thought maybe I could hear some of your experienceswith replacement. I'm scheduled for double

knee replacment in Marchand I'm a nervous wreck. thanx, Judy

for Good - Make a difference this year.

December 30, 2005

>Hey Sweetie,

Welcome this is a great site for help advice feedback and support. I

have had RTKR 09-30-05 and will have the left one done 01-18-06. My Dr

wouldn't do both at the same time as that is his personal policy but I

wish I could have both done at the same time and get it over with. My

first TKR went very smoothly, well I had other unrelated health probs

at the same time, but the actual TKR and subsequent therapy and all

went vey well. I have no qualms about the second one except the wait

until then and the anticipation. I am hoping by next summer I am

wearing high heels out to garden (just kidding). I am hoping to be able

to be active by next spring and summer. I did find that pushing myself

to do my P.T. and making sure I took my pain meds prior to that P.T. I

was able to get free of restrictions and the walker then cane rather

quickly. My Dr. cleared me at 2 months from meds and P.T. as I was

fairly aggressive re my recovery. I wish you the best and feel free to

e-mail me if you want to talk or have any ?'s I can answer.

Good Luck, Contessa

> Hi everyone,

>

> I'm new here. Thought maybe I could hear some of your experiences

> with replacement. I'm scheduled for double knee replacment in March

> and I'm a nervous wreck.

>

> thanx, Judy

>

December 30, 2005

Hi Charlotte,

I'm sorry I just wanted to let you know what could happen it doesn't mean it could happen to you or anyone

Susie

-------------- Original message -------------- From: charlotte clark <charlottie3@...>

Hi Susie, Thanks for that encouraging story about the guy in his 30;s with a double knee replacement. Just what I needed at 2:27 AM Wish I could go back to sleep!! Take care, now. Charlotte in CTjuneflower60@... wrote:

Hi Judy,

I just wanted to say that I read about this guy in his 30's had both his knees replace and it didn't work out for him he couldn't bend his knees and was afraid to have another operations I never heard anymore about him .

I had my right Hip and right knee replacement done I think my knee is better then my Hip I need my left knee done but won't do it because of the way my right side feels .Well I wish you the best of luck and have a Happy New Year.

Susie

-------------- Original message -------------- From: "Judy Wade" <judywade109@...> Hi everyone, I'm new here. Thought maybe I could hear some of your experienceswith replacement. I'm scheduled for double knee replacment in Marchand I'm a nervous wreck. thanx, Judy

for Good - Make a difference this year.

December 31, 2005

Hi, , welcome to this site. Our daughter, Hunter (7 years old) also

is systemic. (Diagnosed May 2004) I regret that another child has been

stricken with this disease. Please feel free to ask as many question as you

want

of this group - this group helped us put our life back together when Hunter

was first diagnosed. Again - please use this group for support as well as

fact finding - they are all great. Sandi, Ken, Hunter (7 Systemic)

January 1, 2006

Hi ,

I am glad that you were able to find our group. My daughter is 10 and

also had systemic jra. She was diagnosed or I should say became ill

when she was 7. It took awhile to actually get a diagnosis.

My daughter was treated with plaquenil (2 years) prednisone tapers and

mtx for one year. She is currently on week 4 of no medications and so

far she seems to be doing pretty good!

The beginning of this journey with jra is so difficult. Please feel

free to share your experience and how your daughter is currently

doing. If you have any questions about medications, therapy, doctors,

school etc....this is the place to post. You will get plenty of

support, encouragement and advice!

Blessings,

(mom to Aundrea age 10 systemic jra)---

In , " dazzle7237 " <dazzle23@l...> wrote:

>

> Hi I just joined this group and its because my daughter Leila who is

> almost 2 was just diagnosed with systemic JRA and IM just looking

for

> other parents who are going through the same thing and just for some

> more information so please anybody that can help please do I dont

> really know how to post and write these messages on here that great

> but my email is dazzle23@l... or my AIM is dazzle7237 thank

> you!!

>

January 1, 2006

Hi ,

There are several children with systemic jra whose parents are on this

list. This is a great place to get information and find support. Good

luck and ask questions! (and Ezra, 9 year old systemic)

----- Original Message Follows -----

> Hi I just joined this group and its because my daughter Leila who is

> almost 2 was just diagnosed with systemic JRA and IM just looking for

> other parents who are going through the same thing and just for some

> more information so please anybody that can help please do I dont

> really know how to post and write these messages on here that great

> but my email is dazzle23@... or my AIM is dazzle7237 thank

> you!!

>

January 1, 2006

Hi . Welcome to the list. It has been helpful to me! My son Louis has

systemic JRA and is 6 and he got it when he was 2. We have tried alot of

different medicines and approaches and I appreciate hearing other stories and

ask questions. We are still relatively new on the list too and have not met

anyone in person, but hope to someday. Good luck to your family. Jan

Re: New Here

Hi ,

There are several children with systemic jra whose parents are on this

list. This is a great place to get information and find support. Good

luck and ask questions! (and Ezra, 9 year old systemic)

----- Original Message Follows -----

> Hi I just joined this group and its because my daughter Leila who is

> almost 2 was just diagnosed with systemic JRA and IM just looking for

> other parents who are going through the same thing and just for some

> more information so please anybody that can help please do I dont

> really know how to post and write these messages on here that great

> but my email is dazzle23@... or my AIM is dazzle7237 thank

> you!!

>

January 1, 2006

,

I hate to hear your baby is so young with a diagnosis of SoJRA.

It's a nasty sub type but with time all will work out.

Hang in there!

It's a real guessing game on the meds as far as how many and how much.It can

be somewhat scarey.Just remember alot of the meds were first developed for

differant diseases but the dose for JRA is smaller.

My guy was diagnosed at 2 and it was was rough.High fevers and a funky

rash,lymph nodes were huge but no organ inflimation.We also got into a

specialist at

the 3 week mark.

Keep a journal of everything concerning fevers,rash morning stiffness,etc...

The absolute best way to go is early,agressive treatment.Children have alot

of cartlidge but at some point it can eat away at the bones and joints.

Stick around and hear other parents experiancesa with their kiddos.

has been in a medicated remission for over 3 yrs,one flare up on

tapering meds.

He has a Mongoose trick bike,scooter,electric dirtbike that goes 17mph,and

skateboard.He plays baseball but football is off limits.He has permission for

basketball and soccer but NO gymnastics.

The meds are slow acting and usualy the dose needs to be increased so expect

about a year for things to settle down.Some kids are respond quicker and

others slower.

I'm just glad you found us and I hope you stick around.

Love and hugs

Becki and 7 systemic

January 8, 2006

Sounds like enzymes could really help your girls. Definitely ask questions.

You will also find an amazing amount of information at enzymestuff.com. There

are a few companies you can get enzymes from, my favorite are Houstons. Their

site is houstonni.com.

Doesn't matter that your girls don't have an autistic diagnosis. They do have

very similar issues. Have you ever looked into getting them to a DAN! doctor?

The website for more information is ari.com They are traditionally used to

treat autism but will help with similar disorders. There is a lot they can

likely do with your girls.

Many of us are treating our kids with natural supplements with huge success.

ADHD can often be helped by changes to the diet and proper vitamin and mineral

supplementation. I am ADD and have gotten a lot of help from those things.

One question, are the girls vaccinated?

Welcome to our group!!!! There is a lot to learn but much to be gained from

it!

ottakee5 <ottakee53@...> wrote:

I tried posting but it didn't seem to come through so I am trying again.

Anyway, I am new here. I have 2 girls, ages 9 and 10 that recently had

IgG RAST tests done. The wheat came back a 3 for one girl and a 1 for

the other. We are waiting on the casein but expect that to be high as

well.

Someone suggested we look into enzymes and a homeschool mom directed me

to this group.

Will the enzymes help with an IgG response to wheat and casein?

Is there any interaction between the enzymes and Tegretol XR(a time

released form)?

Is it reasonable to think that they might be able to have small amounts

of casein and wheat on the enzymes?

They are not autistic but have many other health issues---low thyroid,

slow growth, ADHD, seizures, immune deficiencies, LDs, the 10dd is

mildly mentally impaired, etc.

Thanks for your help.

Ottakee

January 8, 2006

Hi Ottakee,

I happen to like Kirman, so I guess I haven't helped much with that

choice, but...

yes, there is an effect on other meds by enzymes...in particular, an

enzyme that contains cellulase to break down cellulose will cause any

time-release med to be fully released immediately...potentially

toxic. Whichever manufacturer you choose to use, be sure to look for

or call the toll-free to ask which one is best with the meds that are

being taken...sometimes all that is needed is a time delay between

the meds and the enzymes if time-release is not a factor.

Also...expect some readings on soy and if results seem to stall with

the elimination, look at corn even if it doesn't register on the IgG.

Hope that helps...

V

>

> I tried posting but it didn't seem to come through so I am trying

again.

>

> Anyway, I am new here. I have 2 girls, ages 9 and 10 that recently

had

> IgG RAST tests done. The wheat came back a 3 for one girl and a 1

for

> the other. We are waiting on the casein but expect that to be high

as

> well.

>

> Someone suggested we look into enzymes and a homeschool mom

directed me

> to this group.

>

> Will the enzymes help with an IgG response to wheat and casein?

>

> Is there any interaction between the enzymes and Tegretol XR(a time

> released form)?

>

> Is it reasonable to think that they might be able to have small

amounts

> of casein and wheat on the enzymes?

>

> They are not autistic but have many other health issues---low

thyroid,

> slow growth, ADHD, seizures, immune deficiencies, LDs, the 10dd is

> mildly mentally impaired, etc.

>

> Thanks for your help.

> Ottakee

>

January 9, 2006

Hi Crystal,

We are very similar in the fact that we didn't have it much anymore around

the age of 20. It seemed like once most of the cartilage was destroyed or

gone due the replacement hips and knees I have, then there was nothing to

attack. Like you my hands are the most noticable affect. Unfortunately I

flared again about 4 years ago and it absolutlely cripples me if i go off

the Enbrel. It is alsmost as if my cartilage was built back up again over a

period of time. Hopefully this will not happen to you.

taylor (poly 35 since 12)

New here

Hey everybody, this is my first post. I was diagnosed with jra when I

was about 4 years old, and now Im almost 19. The good news is I dont

really have it anymore just the damage from it. It really messed up my

hands especially. I have not been in medications since I was in middle

school, and now im a freshman in college. I think this is a cool place

for people to talk. Feel free to ask any questions. by the way my name

is crystal

January 9, 2006

Hello Crystal and welcome to the group!

Donna

January 9, 2006

I am planning on order the Peptizyde one today. I was going to order the Zyme

Prime as well but noticed that it has cellulase in it which can break down

cellulose. My 10dd's Tegretol XR has cellulose in it and I can't have that

tablet broken down faster as it is a time released thing. I will have to

investigate that one further first.

January 9, 2006

Hi Ottakee.

If you haven't already picked up a copy of Enzymes for Autism and other

Neurological

Conditions by DeFelice, it is a great place to get started. An easy

informative read.

My 9 yo dd reacted on the same allergy test to scores of foods including casein

and gluten.

With Houston enzymes she was immediately able to tolerate being off GFCF diet

and now has

no particular diet restrictions. I think in our case, her AS it was a

combination of gut damage

from vaccines and some sort of viral issue. After about 18 months she no longer

needed

frequent enzyme supplementation and her recovery peaked.

Serena

January 9, 2006

Is the cellulose in the chewables?

Ottakee Ottakee <ottakee53@...> wrote:

I am planning on order the Peptizyde one today. I was going to order the Zyme

Prime as well but noticed that it has cellulase in it which can break down

cellulose. My 10dd's Tegretol XR has cellulose in it and I can't have that

tablet broken down faster as it is a time released thing. I will have to

investigate that one further first.

January 9, 2006

,

wow, im sorry to hear it came back up again, i dont know what i

would do.I really hope it doesnt flare up again. Yeah it pretty much

left my hands crippled, or at least thats what i feel like. I cant

bend my wrists for nothing, and some of fingers are really stiff.

Its hard to open alot of things.I hope you get better:)

>

> Hi Crystal,

> We are very similar in the fact that we didn't have it much

anymore around

> the age of 20. It seemed like once most of the cartilage was

destroyed or

> gone due the replacement hips and knees I have, then there was

nothing to

> attack. Like you my hands are the most noticable affect.

Unfortunately I

> flared again about 4 years ago and it absolutlely cripples me if i

go off

> the Enbrel. It is alsmost as if my cartilage was built back up

again over a

> period of time. Hopefully this will not happen to you.

> taylor (poly 35 since 12)

>

> New here

>

> Hey everybody, this is my first post. I was diagnosed with jra

when I

> was about 4 years old, and now Im almost 19. The good news is I

dont

> really have it anymore just the damage from it. It really messed

up my

> hands especially. I have not been in medications since I was in

middle

> school, and now im a freshman in college. I think this is a cool

place

> for people to talk. Feel free to ask any questions. by the way my

name

> is crystal

>

January 10, 2006

Yeah, I really hope it does not come up for you or anyone for that matter

that is in " remission. "

New here

>

> Hey everybody, this is my first post. I was diagnosed with jra

when I

> was about 4 years old, and now Im almost 19. The good news is I

dont

> really have it anymore just the damage from it. It really messed

up my

> hands especially. I have not been in medications since I was in

middle

> school, and now im a freshman in college. I think this is a cool

place

> for people to talk. Feel free to ask any questions. by the way my

name

> is crystal

>

January 10, 2006

> Is there any interaction between the enzymes and Tegretol XR(a time

> released form)?

Contact the enzyme supplier you use, and ask. Some enzymes will

affect this, others won't. For HNI's info, click on the link at the

top left of the site

http://www.houstonni.com/

> Is it reasonable to think that they might be able to have small amounts

> of casein and wheat on the enzymes?

I added back wheat with great success, my son made nice improvements.

I could only add small amounts of milk, but it was not a casein

issue, it was a fat absorption issue, which required mito cocktail and

amino acids to resolve.

> They are not autistic but have many other health issues---low thyroid,

Thyroid info

http://www.drrind.com/thyroidscale.asp

> slow growth, ADHD, seizures, immune deficiencies, LDs, the 10dd is

> mildly mentally impaired, etc.

All those can all be signs of metal toxicity

http://www.danasview.net/chelate.htm

http://www.generationrescue.org/

Dana

January 21, 2006

> picky eater with a penchant for carbs, he has difficulty falling to

> sleep at night, often wakes himself in prolonged fits of

> uncontrolled giggling or squealing, has a bit of a rash on his

> cheeks and red ring around his rectum, and often has fits of

> squealing and inappropriate giggling. Based on feedback from other

> parents, it seems we may have some phenol and yeast issues, along

> with possibly other issues.

Both phenol intolerance and yeast overgrowth can cause those issues

http://www.danasview.net/phenol.htm

http://www.danasview.net/yeast.htm

The red ring around the rectum is usually yeast.

> My primary question is this - many of the parents on the GFCFKids

> chat list use a combo of diet and enzymes to help their children.

> Is it possible to do this with enzymes only?

For many kids, yes. Sometimes you still need to remove foods, but

usually it is fewer foods than if you did not use enzymes.

>>Is it possible to start with enzymes and move on to dietary

> restrictions if no improvements are seen?

Start with enzymes, then rotate foods to figure out if any of the

foods still need to be removed. I used HNI enzymes with great success

http://www.houstonni.com/

Dana

February 1, 2006

Stacey,

In my attempts to repo ds I caused him to get a little brachy too.

Not much but it was still there. He wore his band from 5-8 months and

got amazing correction. He has before and after DOC Band pictures in

the files section.

4 months is a great age to band. I bet you'll be pleased.

Mom to Dane (4 yo) and Cece (13 mo) DOC Grads

February 1, 2006

Stacey,

In my attempts to repo ds I caused him to get a little brachy too.

Not much but it was still there. He wore his band from 5-8 months and

got amazing correction. He has before and after DOC Band pictures in

the files section.

4 months is a great age to band. I bet you'll be pleased.

Mom to Dane (4 yo) and Cece (13 mo) DOC Grads

February 1, 2006

Hi Stacey,

Welcome to the group. It's not too uncommon for a baby who is severe

to require more than one band. I think CT is just preparing you in

case he does need 2 bands.

It would be very hard to repo a brachy baby w/o causing other parts of

his head to go flat. Like I made the good part of my baby's

head worse through my repoing efforts. Repo works but not for all of us.

Don't worry your son is at an excellent age to receive awesome

correction from his DOCband. Check out the photos section in the

DOCband before and after section. You'll be amazed at the correction a

19.5 month old received! :-) Keep us posted.

--- In Plagiocephaly , " oscaredwink " <oscaredwink@y...>

wrote:

>

> Hi:

>

> I have been lurking here for a while and now finally have some

> questions of my own, if you don't mind. Thank you so much for all of

> the good information you share here.

>

> Our son was casted yesterday for a DOC band and will get it next

> Friday. My questions are about severity and types of head shape. We

> have known for a while that he had plagio and he has been in PT for

> tort. What surprised us yesterday is that he also has brachy--his CR

> was 100% which seems to be pretty severe to me. I thought that we

> were educated and knew what we needed to know, but now I am really

> concerned about what kind of correction we are going to see. They are

> already talking about 2 bands and he hasn't gotten his first one yet.

>

> Is it common to have plagio (13mm asymmetry, btw) and brachy? Has

> anyone out there seen good correction with both things going on? He

> is 4 months old, but was born at 34 weeks so sometimes they age

> correct back.

>

> Sorry this is long, but I am not finding that much out there about

> brachy. We have had him screened by a neurosurgeon to rule out fusion

> issues, but I am frustrated about that now too because the

> neurosurgeon classified him as moderate and suggested more

> repositioning. (I am not opposed to repo, we actually successfully

> repoed our oldest son who had mild plagio and tort.) I am just not

> very clear on how you could repo out of brachy--he doesn't sit up yet

> of course or even roll over.

>

> Thanks for any insight--I guess I am just looking for some reassurance

> that the DOC band is going to be able to improve his flatness.

>

> Stacey

>

February 1, 2006