Re: hereditary

[Guest guest]

I too am reasonably sure that hereditary genes have something to do with

it....

JRA is an autoimmune disease as is Lupus (my mom has)

My sister may also have lupus and they think renauld's (sp).

At one point I thought maybe we carried the VCFS gene as Meghann has PRS

(pierre robin sequence), many of the characteristics and problems she had

are part of this syndrome (VCFS). Her brother also had micrognathia, she

had a sibling that was born with the major transposition of the arteries to

the heart; and low and behold JRA is also listed as a possibility within

this syndrome. Took the blood test....negative......back to the drawing

board.....

Sharon and Meghann

JRA and PRS

Hereditary

> My dad had something like this when he was in high school and he was out

for

> a year. My mom can't remember exactly what the story was, and everyone

else

> is gone. He also suffered terriblly with arthritis his whole adult life.

> When I was young, I always had sore legs and my mom always rubbed them or

I

> took a hot bath. Back then we just used aspirin and it seemed to help.

>

> I am sure it has to be hereditary, even tho the docs say no, where else

would

> it come from? We would have to pass it along somehow. I can't blame

myself,

> how are we to know what we have in our genes? All I know is I wouldn't

trade

> for anything, sick or not.

>

> Pat

>

>

>

[Guest guest]

Sharon,

I hate to show my ignorance, but what test came back negative???? I thought

that a majority of the kids with JRA didn't test positive for the Rheumatoid

Factor/ANA??

Is my feeble, pushing 40 with a 5 year old with chronic illness yet to be

diagnosed but probably Systemic JRA or a periodic fever syndrome, failing

me? LOL

We too have lots of autoimmune diseases that run on both sides of our

families and a few docs have told me that if they could unlock the whole

genetics, heredity thing, that it would probably show more inherited traits

than originally recognized.

Oh well, I may not know at all what I am talking about, so I will just stop

rambling.

Angie,

Nacogdoches, TX

Re: Hereditary

>I too am reasonably sure that hereditary genes have something to do with

>it....

>

>JRA is an autoimmune disease as is Lupus (my mom has)

>My sister may also have lupus and they think renauld's (sp).

>

>At one point I thought maybe we carried the VCFS gene as Meghann has PRS

>(pierre robin sequence), many of the characteristics and problems she had

>are part of this syndrome (VCFS). Her brother also had micrognathia, she

>had a sibling that was born with the major transposition of the arteries to

>the heart; and low and behold JRA is also listed as a possibility within

>this syndrome. Took the blood test....negative......back to the drawing

>board.....

>

>Sharon and Meghann

>JRA and PRS

> Hereditary

>

>

>> My dad had something like this when he was in high school and he was out

>for

>> a year. My mom can't remember exactly what the story was, and everyone

>else

>> is gone. He also suffered terriblly with arthritis his whole adult life.

>> When I was young, I always had sore legs and my mom always rubbed them or

>I

>> took a hot bath. Back then we just used aspirin and it seemed to help.

>>

>> I am sure it has to be hereditary, even tho the docs say no, where else

>would

>> it come from? We would have to pass it along somehow. I can't blame

>myself,

>> how are we to know what we have in our genes? All I know is I wouldn't

>trade

>> for anything, sick or not.

>>

>> Pat

>>

>>

>>

[Guest guest]

The test I believe is called a fish test....It is a test that geneticist use

to diagnose VCFS also know as velo cardio facial syndrome. If you go to

their site you will also see that JRA is listed as a possible connection to

this syndrome. My daughter also was born with PRS (Pierre Robin

Syndrome)...another known possible component of VCFS. The thought of my

daughter having both of these conditions (JRA and PRS) had me thinking that

maybe she had VCFS which is a genetic condition.

If she had tested positive for VCFS I would probably at least know that

there was a greater possibility that this was a genetically passed

situation. I.e.....that because of her genetic makeup she would be more

likely to pass on this gene to future children.

Not a big worry, as all of my children know what we have been through and

know that all things are possible....They are informed, and will inform

their doctors or GyN/OB's/pediatricians so perhaps everyone will be ready

for any eventuality.

But again I'm like any parent, there will always be a part of me that

wonders why? ( you know besides the answer of Just lucky? )

Meghann does test positive for ANA but not for the rheumatoid factor, by the

way.

Sharon and Meghann

JRA and PRS

[Guest guest]

Hi Pat

I don't know if I can agree on arthritis being hereditary or not.

There isn't ANYONE on my side of the family, or my ex's side (there's

15 kids in his family) that has had or has arthritis. I've asked 3

rheumy's, they all said no, there's no real evidence proven that it

is hereditary. Jordan went from climbing trees in september 2000 to

not being able to walk in october 2000. We had NO clues leading up

to it, he came home with a sore elbow on Friday the 13th in October,

and the fevers, rash etc followed the next day. I have 3 other kids,

none of them were sickly as little ones, Jordan did have steppacacus

(sp?) when he was 18 months old, which does a number on your immune

system, but they can't say for sure it's connected or not.

Just my 2 cents worth

Lori mom of Jordan 5 - systemic

> My dad had something like this when he was in high school and he

was out for

> a year. My mom can't remember exactly what the story was, and

everyone else

> is gone. He also suffered terriblly with arthritis his whole adult

life.

> When I was young, I always had sore legs and my mom always rubbed

them or I

> took a hot bath. Back then we just used aspirin and it seemed to

help.

>

> I am sure it has to be hereditary, even tho the docs say no, where

else would

> it come from? We would have to pass it along somehow. I can't

blame myself,

> how are we to know what we have in our genes? All I know is I

wouldn't trade

> for anything, sick or not.

>

> Pat

>

>

>

[Guest guest]

Sharon,

Aha, you have enlightened my feeble brain this evening. It is all so

interesting to me how the research for all of this leads back to a link

between certain things. I just wish they could come up with a definitive

test for everything and then it would be so much easier to diagnose. But I

am not holding my breath for that to happen.

Thanks for the info.

Angie,

Nacogdoches, TX

-----Original Message-----

[Guest guest]

Laurie, those are the exact dates that 's started. I had her 6th b-day

party planned for Oct 1, she got sick the week before, postponed the party

for a week, then ended up at the hospital Oct 1.

I guess we'll really never know what happened or how. I'm just glad that

they sort of have it under control.

As of today, is starting a cold, of course, she just started school.

So we are off to the docs and I am wondering how long this one will last.

Pat

[Guest guest]

hi jamie

thank you for the responses. i do agree with your

interpretation of hereditary and stills. i have a long

report from the genetic counseling dept of the univ of

heidelberg that studied my case. they do not think

that my child will come down with stills. however,

they do believe that i can pass down the genetic gene

for rheumatism and if triggered, it could turn out to

be some sort of rheumatic disease. i still hope that

with the research, my child will be at less risk and

up for better treatment if coming down with a

rheumatic disease.

you have to weigh the pro's and con's, i was pretty

confident in the report.

tatjana

--- <jatw@...> wrote:

> Hello,

>

> I also don't want to alarm anyone either. I do

> believe this disease or

> similar autoimmune diseases are hereditary.

>

> I have the Stills, Fibro, IBS and Sjogrens Disease.

> My grandmother on my

> dad's side was diagnosed with Rheumatory Arthritis

> around age 30 and later

> Lupus. I often wonder if she actually had Stills.

> My grandmother on my

> mom's side, her sister was diagnosed with Rheumatory

> Arthritis also around

> age 30. My mom at around age 50 was diagnosed with

> Fibromyalgia. This info

> is from the relatives that I know. Unfortunately I

> am not that close with

> most of my relatives.

>

> I just don't believe that all of this is a

> coinincidence, of course this is

> just my opinion. I don't believe my own children are

> at risk for the disease

> but possibly a couple of generations down. I

> certainly am praying and

> hoping this isn't true.

>

> I also believe that even if someone may have the

> predisposition for the

> disease that doesn't necessarily mean they will get

> the disease. I believe

> there has to be a trigger of some sort. In my case

> I was under a tremendous

> amount of stress. This is probably true of my other

> relatives that ended up

> with the autoimmune diseases. Except my mother, she

> has been in numerous

> car accidents that probably were the trigger for her

> Fibromyalgia.

>

> Remember these are my own thoughts and beliefs on

> the hereditary issue.

>

> Love,

>

>

> jatw@...

>

>

>

>

__________________________________________________

[Guest guest]

My grandfather had RA as a child, and then again in his 80's. I'll bet

it was Stills. However, I have had 3 RD's tell me that they believe they

will have a cure for RA in the next ten years. So hopefully our children

won't have to worry, even if they do inherit a genetic predisposition!

Cyndi and Lambo, in Little Rock, AR

LambosPals@...

/ May today there be peace within you.

-) May you trust God that you are exactly

\ where you are meant to be. amen

________________________________________________________________

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[Guest guest]

My grandfather had RA as a child, and then again in his 80's. I'll bet

it was Stills. However, I have had 3 RD's tell me that they believe they

will have a cure for RA in the next ten years. So hopefully our children

won't have to worry, even if they do inherit a genetic predisposition!

Cyndi and Lambo, in Little Rock, AR

LambosPals@...

/ May today there be peace within you.

-) May you trust God that you are exactly

\ where you are meant to be. amen

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Hello all.

Just to add my 2cents, my grandfather on my mothers side, and his sisters had

arthritis. That is it. Then it's me. Hmm??

wrote:Hello,

I also don't want to alarm anyone either. I do believe this disease or

similar autoimmune diseases are hereditary.

I have the Stills, Fibro, IBS and Sjogrens Disease. My grandmother on my

dad's side was diagnosed with Rheumatory Arthritis around age 30 and later

Lupus. I often wonder if she actually had Stills. My grandmother on my

mom's side, her sister was diagnosed with Rheumatory Arthritis also around

age 30. My mom at around age 50 was diagnosed with Fibromyalgia. This info

is from the relatives that I know. Unfortunately I am not that close with

most of my relatives.

I just don't believe that all of this is a coinincidence, of course this is

just my opinion. I don't believe my own children are at risk for the disease

but possibly a couple of generations down. I certainly am praying and

hoping this isn't true.

I also believe that even if someone may have the predisposition for the

disease that doesn't necessarily mean they will get the disease. I believe

there has to be a trigger of some sort. In my case I was under a tremendous

amount of stress. This is probably true of my other relatives that ended up

with the autoimmune diseases. Except my mother, she has been in numerous

car accidents that probably were the trigger for her Fibromyalgia.

Remember these are my own thoughts and beliefs on the hereditary issue.

Love,

jatw@...

[Guest guest]

What I can contribute is that both of my children, now adults, have PA. As do I.

The gift that keeps on giving.

Seabreezemomgrandma

[Guest guest]

Hello SD,

You said:

" I know everyone is talking about food and meds to ease our

conditions, but I was told P and PA are passed on in families. It

has nothing to do with weight or overall health. "

I agree, there is a high degree of heritability to P and PsA, but

that is only part of the story.

New findings from studies done in Iceland back up your assertion.

Some info about what you have been told can be found here under " Risk

Ratio for Psoriatic Arthritis " :

http://www.medscape.com/viewarticle/580739

This study backs up the heritability factor as well:

http://rheumatology.oxfordjournals.org/cgi/content/full/44/6/773

Like you I believe it is important to keep life as stress-free and

healthy as is possible. Since our systems are already compromised, I

believe it is prudent not to tax them with foods that may be somewhat

stressful, even though we get some benefit from them. Most people can

drink 2 or 3 glasses of wine or beer every now and then with little

or no repercussions the next day; I have yet to hear of anyone who

has psoriatic arthritis that is able to make that claim. Since this

seems to be the case, I believe that if we listen to both, our bodies

and to the wisdom of other PsA endurers who have experimented with

food, we may have a better likelihood of creating and maintaining

optimum conditions for our varied and complex bodies to take care of

themselves as best they can. For me, it beats succumbing to a

monster that I did not knowingly ask to share my life.

Best wishes,

Brent

[Guest guest]

Hi Brent,

You make an interesting point. I just wanted to pass on some thought. I went

the sulfazine route instead of MTX. I don't drink a lot, some weeks, nothing

at all, other weeks, I may have a few drinks a few nights a week. I have never

had an issue the next day. I have however noticed that after eating certain

foods I feel miserable the following days. I pretty much don't eat red meat

anymore as a result.

I guess it effects us all different ways, which is probably what makes it so

annoying. There does not seem to be a formula to get better..

rgds

tom

[Guest guest]

I take both. You might still find yourself on MTX.

Gareeth

mrtom wrote:

> I went the sulfazine route instead of MTX.

[Guest guest]

Gareth,

Your most likely correct but I would like to put it off as long as I can. I have

had PsA for about 10 years now (I am 36) and am currently on max dose for

sulfazine (4 pills 2x a day). I also take nabumentone and then a few others to

mitigate side effects.

Oddly enough my rheumy does not want me to go MTX, nor did my last one. They

both suggest jumping straight to Cellcept.

I will try to stay where I am however for as long as I can. On the good side, my

psoriasis had pretty much cleared up as well.

rgds

tom

[Guest guest]

You are lucky. Mine absolutely loves methotrexate and is convinced it must

be helping. He always points out that my psoriasis is better now but my

psoriasis has always been pretty mild. I need something that helps my

joints. I can't even walk my dog around the block at this point without

being in pain for hours and it is getting pretty frustrating.

Gareeth

mrtom wrote:

>

> Oddly enough my rheumy does not want me to go MTX, nor did my last

> one. They both suggest jumping straight to Cellcept.

>

[Guest guest]

Gareeth:  my rheumy went straight to Enbrel.  Many do try MTX first

because insurance companies normally require trying the cheaper option first. 

My rheumy had to appeal several times - even finally sending x-rays to show

joint damage before I got approved.  Keep pushing if you feel the MTX isn't

working or find another doc if you can.  When I first developed PA, I could

barely get up the stairs at night to go to bed and it was a struggle just to do

normal household tasks.  Within two months of starting Enbrel, I was virtually

back to my old self and have stayed that way for nearly 18 months.  I have some

osteo pain but it is very joint specific and I find it to be totally different

from PA.  For me, at least, PA was an overwhelming, all-over achiness/pain.    

 Joanna Hoelscher

[Guest guest]

Hello,

As most of you know, we have a 25 month old son who was recently diagnosed

with Oral Motor Apraxia (who is doing great on the NV - by the way!) We also

have a " normal " 4 year old son. My husband and I have been considering having

another child for a while now (in fact I miscarried twins last fall:()

Anyway, I have noticed a trend with some of the people in the group that have

more than one child with speech delays, disorders or other issues. I guess my

question is: Has there been any information collected on the likely-hood of any

additional siblings having these same delays or disorders? (You know like they

say that if you have a set of twins, your chances of having another set of twins

increases.) I am just curious.

I apologize if this subject has already been covered by this group, but I

haven't seen anything since I have been a member.

Thanks!

[Guest guest]

My daughter is a twin. Her brother had speech delays, but he can talk the best

out of all of my kids. The genetic people are more interested in her twin then

the other children, however their doctor wants the whole family tested. There

was an abnormality found in her X chromosome. We will know more on Wednesday.

Shultz

From: katie.m.stahl@...

Date: Fri, 5 Mar 2010 11:31:57 -0700

Subject: RE: [ ] hereditary

Hello,

As most of you know, we have a 25 month old son who was recently diagnosed with

Oral Motor Apraxia (who is doing great on the NV - by the way!) We also have a

" normal " 4 year old son. My husband and I have been considering having another

child for a while now (in fact I miscarried twins last fall:() Anyway, I have

noticed a trend with some of the people in the group that have more than one

child with speech delays, disorders or other issues. I guess my question is: Has

there been any information collected on the likely-hood of any additional

siblings having these same delays or disorders? (You know like they say that if

you have a set of twins, your chances of having another set of twins increases.)

I am just curious.

I apologize if this subject has already been covered by this group, but I

haven't seen anything since I have been a member.

Thanks!

[Guest guest]

My 8yr old daughter has Apraxia, mild cp and hydrocephalus. She also has a

chromosome deletion. I have an older son who needed speech therapy thru EI and a

few months of prek, but no more since. When I became pg with my youngest, the

geneticist suggested having him tested just after he was born to see if he has

any of the same genetic deletions, but only him because he came after her. This

was only so we'd be prepared for his needs. But the genetics doctor said I

should not subject my oldest son to any form of genetic testing. What they said

is it could affect his future insurance coverage if anything was found. So now

someday he can have himself tested when he's ready to have his own children--but

he can never be denied coverage because of some deletion that his sister has.

just my experience. theres no reason to test siblings if they're not showing

signs of any of the same issues.maureen

>

>

>The genetic people are more interested in her twin then the other children,

however their doctor wants the whole family tested. There was an abnormality

found in her X chromosome. We will know more on Wednesday.

>

> Shultz

>

[Guest guest]

I don't want to have my oldest son tested. I just want to know what my chances

are of having another child with Apraxia if we do have another baby. It may

sway us one way or another about having a third child. Does anyone know the

frequency of this?

________________________________

[Guest guest]

But he has and still is in speech threw the school. I could see if it is a pre

existing condition where he would not be covered but since it is just the speech

that has caused a problem in my family I dout it will be a big deal. If they

find something sorry everyone should be tested and we owe that to our children

to know for future generations. My feelings

Shultz

[Guest guest]

My youngest had the same speech issues that my oldest had--a little bit of help

from EI and speech during prek but nothing close to Apraxia for either. My

husband and I were both late-talkers according to our parents--nearly 3yrs old

for both of us, but EI was not around back than. We've also both been tested for

the gene issues that our daughter has and it was not inherited from us--its only

unique to her. I've also heard that speech issues are common if parents had

speech issues too...so it depends more on the history of you and hubby more than

what speech issues your daughter has. I would not pass up having my son that

followed my daughter because he needed EI therapy either.

>

> just want to know what my chances are of having another child with Apraxia if

we do have another baby. It may sway us one way or another about having a third

child. Does anyone know the frequency of this?

>

>

> ________________________________

>

[Guest guest]

Exactly! I dont want my oldest to be denied coverage when he goes for a job

after college---but if he's concerned enough about the deletion that his sister

has(not her Apraxia)--than he can have himself tested as an adult--which would

be his future generations!

>

> But he has and still is in speech threw the school. I could see if it is a pre

existing condition where he would not be covered but since it is just the speech

that has caused a problem in my family I dout it will be a big deal. If they

find something sorry everyone should be tested and we owe that to our children

to know for future generations. My feelings

>

> Shultz

>

[Guest guest]

We just had genetic testing done on our daughter and there was also an

abnormality found in her x chromosome. They earliest appt. we could get to see

the geneticist is in mid April. My daughter has hypotonia and oral and verbal

apraxia.

________________________________

From: CHRISTINA Shultz <candmsh@...>

Sent: Fri, March 5, 2010 2:44:33 PM

Subject: RE: [ ] hereditary

 

My daughter is a twin. Her brother had speech delays, but he can talk the best

out of all of my kids. The genetic people are more interested in her twin then

the other children, however their doctor wants the whole family tested. There

was an abnormality found in her X chromosome. We will know more on Wednesday.

Shultz

@groups. com

From: katie.m.stahl@ thermofisher. com

Date: Fri, 5 Mar 2010 11:31:57 -0700

Subject: RE: [childrensapraxiane t] hereditary

Hello,

As most of you know, we have a 25 month old son who was recently diagnosed with

Oral Motor Apraxia (who is doing great on the NV - by the way!) We also have a

" normal " 4 year old son. My husband and I have been considering having another

child for a while now (in fact I miscarried twins last fall:() Anyway, I have

noticed a trend with some of the people in the group that have more than one

child with speech delays, disorders or other issues. I guess my question is: Has

there been any information collected on the likely-hood of any additional

siblings having these same delays or disorders? (You know like they say that if

you have a set of twins, your chances of having another set of twins increases.)

I am just curious.

I apologize if this subject has already been covered by this group, but I

haven't seen anything since I have been a member.

Thanks!