Immunizations

April 29, 2000

where do you live in florida?

May 1, 2000

ft myers...i don't think it is a county thing i think it is a state thing,

since it is done throught the health ept on a state immunization acrd.i think

it is state.

January 9, 2001

Hi Sharon:

Do you mind my asking what PRS is, how it affects Meghann? Sounds like you

have your hands full, not just with Meghann but with 5 kids!

Lynn

immunizations

Lynn says

>>Also, something you should know is that chicken pox is a very

serious illness for JRA kids, too. >>

I don't think that can be stressed enough. Meghann was stricken with

chicken pox. Although we got her to the doctor and she was given the

aclovir (Dr said given within the first 24 hours would lessen the affects of

the chicken pox). She had a much more severe case than any of her brothers

or sisters. (They had it 5 years earlier before she was born). She ran

high fevers, vomited in all a very sick little girl. We brought her in once

and was hour to hour phone calls to her pediatrician.

Of course she came off all her meds immediately which of course started off

a flare. Was not a pleasant experience.

On the causes....as we know nobody knows...only speculations. I figure

Meghann had JRA fairly early long before her dx and long before we had any

concerns. When she was a baby she would sometimes yelp when I would change

her diaper. I would be totally befuddled and chalked it up to stomach

problems or something from her g-tube. Although that seemed unlikely it was

the only thing I could contribute it to....JRA was the furthest thought from

my mind.

I do believe in our genetic soup she may have had some tendencies. My mom

has Lupus and my sister possibly has Renauds. There are a few more family

members with RA.

Because Meghann was also born with Pierre Robin Syndrome/Sequence (PRS) the

chances of her being born with isolated PRS was about 20% and80% that it was

present in conjunction with another syndrome, I have constantly been

researching other possibilities. One syndrome called Sticklers (35%of PRS

children have this) does present with arthritis, however it is

osteoarthritis Vs rheumatoid arthritis. At this point she is negative for

the other symptoms of Sticklers. Another possibility was VCFS

(Velo-cardio-facial-syndrome) which can present with both JRA and PRS. We

recently had that one ruled out.

I don't necessarily dwell on the possibility that she got this genetically.

We aren't planning on having any more children; she was #5. However our

children will be having children someday and it would be nice for them to

know if and if so what are their chances they may be passing this along.

Let them decide what they want to do. Personally, there are worse things

that can happen than either of these two conditions; and if this is the

worse hand dealt to them then I hope they deal themselves in.

Sharon and Meghann

JRA and PRS

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June 11, 2001

Sherri,

I just went to Costa Rica,

I found it was just wonderful, I had no problems. You can drink the water there with no ill effects. It is NOT like Mexico. The rain forest was great and you must do the Volcano. Tubacan, is a great spa. The Hotels there are 5 1/2 stars that we stayed in. The only thing I found was different was the beef. There steak was not like ours. Stick with chicken, or sea food and you will be fine.

There is a lot of poverty there, but you will find that almost anywhere.We stayed at the Radisson, in San . Beautiful...

Immunizations

Hi and Everyone:

I have a question, perhaps someone has experience with this subject. I plan on travelling to Costa Rica this winter. I am now faced with the dilemna of whether or not to get shots. I will go to the health unit today to see what shots they suggest, but you know, I do not trust what they are going to tell me, I am sure they have been well brainwashed. I do not want to be a paranoid fool either so I need to do some investigating on my own. I am thinking, "my immune system has just undergone a lot of punishment, do I, or should I, give it a shot in the arm to set it off again." Who knows what ill effect these immunizations have on our body. I have heard more about shots for Hepatitis A than any other ones. Does anyone have any experience with this? I am thinking not to get any shots, just find out the best way to protect myself from getting into situations that have the potential to make me ill. Sheri

May 15, 2002

Eli-

I can relate. 's due for her checkup and I'm postponing making the appt. because I'm so paranoid of immunizations causing a flare.

Diane (, 3, pauci)

May 15, 2002

Okay this probably will sound like a stupid question(especially

considering I am a nurse) but I need to know. (I work with adults not

kids so this is out of my area). Anyway, I know my daughter can't

have the varicella (chicken pox) vaccine because it is a live

vaccine. She takes MTX, Enbrel and Pred among others. But her 5 y.o.

brother has not had the disease yet (amazing because he slept in the

same bed with his 13 y.o. brother on vacation 2 yrs ago before we

knew he had them); but then she didn't get them then either (her

titier is negative.. Anyways, I was thinking I should get him

vaccinated to decrease her risk but can she " catch " them because of

that? I know that the child getting the vaccine is at risk? He is

also supposed to get some other vaccines before kindergarten. Do they

put her at risk? I hate to put him at risk for disease because I have

seen the horrible effects of pertussis, polio etc but I won't put her

at risk either.

Thanks for any input. I need to check with the health department too.

But I know people who have " been there, done that " can tell you so

much more.

e

May 15, 2002

Hi e,

I don't know how much help I can be, but if it was me, I would have my other

child get the immunization. Easy for me to say - I only have one child. Rob

did get the chickenpox immunization long before he developed JRA. Even with

that, when tested, his titer was low. (Either because of his meds, or because

it was dormant because of no exposure) They were not really sure. But, when

there was a suspected case of chickenpox in his daycare, his pediatrician had me

pull him out of there because she said that if he caught chickenpox, he would

require hospitalization because his immune system is so compromised by his meds

that he would be deathly ill. Luckily, it was a false alarm, the other child

didn't have chickenpox. But, his pediatrician had told me he would need to stay

out of pre-school for ten days following any child being diagnosed with

chickenpox because the risk was too great.

There has been a lot of discussion about immunizations and there connection with

arthritis among the group, and I have my concerns as well. My grandfather had

polio, and my grandmother lost two babies to it - so I support the giving of

immunizations. We just don't know what causes this ( I am kind of responding to

the " Why my child " post now.) - but since it is an autoimmune disorder - I am

with the group that kind of thinks that this was something dormant in my son,

and anything that triggers the immune system can trigger the disease - and that

includes so many things like a bee sting, injury, illness, and who knows what

else I think it would have happened regardless. My son also has Minimal Change

Disease, which affects his kidneys, this too was triggered by something

triggering the immune system. A bee sting, an immunization or illness can

trigger a flare of the kidney problem as well. So it is part of him - one of

his " crosses to bear " as my grandmother would put it, were she still here.

There is a viral arthritis - and it does go away on it's own - maybe the one's

who develop the type that doesn't go away following an immunization are the

one's who would have developed it at one time or another when something else

triggered the body to react the way that it does. Who knows?

I honestly don't think that children outside of a research study are being given

things experimentally - because that type of research would not benefit the

person doing it - because in order to move forward with what ever they are

researching they have to be able to publish the results - or make them public in

order to be able to market the medication they are testing, or to announce their

discovery. Just my two cents.

Hugs to all.

Val

Rob's Mom (4,systemic)

In a message dated Wed, 15 May 2002 2:15:38 PM Eastern Daylight Time,

" boundforlondon " <gktriplej@...> writes:

>Okay this probably will sound like a stupid question(especially

>considering I am a nurse) but I need to know. (I work with adults not

>kids so this is out of my area). Anyway, I know my daughter can't

>have the varicella (chicken pox) vaccine because it is a live

>vaccine. She takes MTX, Enbrel and Pred among others. But her 5 y.o.

>brother has not had the disease yet (amazing because he slept in the

>same bed with his 13 y.o. brother on vacation 2 yrs ago before we

>knew he had them); but then she didn't get them then either (her

>titier is negative.. Anyways, I was thinking I should get him

>vaccinated to decrease her risk but can she " catch " them because of

>that? I know that the child getting the vaccine is at risk? He is

>also supposed to get some other vaccines before kindergarten. Do they

>put her at risk? I hate to put him at risk for disease because I have

>seen the horrible effects of pertussis, polio etc but I won't put her

>at risk either.

>

>Thanks for any input. I need to check with the health department too.

>But I know people who have " been there, done that " can tell you so

>much more.

>

>e

>

May 15, 2002

I am not sure about the chicken pox,but I do know MMR and DPaT and inactive

Polio can not be passed.Even with the MMR if your child gets the fever and

the rash they really dont have measles and they cant give it to anyone.I do

know there is a chance you might get a few pox from the chicken pox

vaccine,but it is supposed to be very mild,I also know that the chicken pox

vaccine is not 100%you can still catch it but again its supposed to be mild.

boundforlondon wrote:

> Okay this probably will sound like a stupid question(especially

> considering I am a nurse) but I need to know. (I work with adults not

> kids so this is out of my area). Anyway, I know my daughter can't

> have the varicella (chicken pox) vaccine because it is a live

> vaccine. She takes MTX, Enbrel and Pred among others. But her 5 y.o.

> brother has not had the disease yet (amazing because he slept in the

> same bed with his 13 y.o. brother on vacation 2 yrs ago before we

> knew he had them); but then she didn't get them then either (her

> titier is negative.. Anyways, I was thinking I should get him

> vaccinated to decrease her risk but can she " catch " them because of

> that? I know that the child getting the vaccine is at risk? He is

> also supposed to get some other vaccines before kindergarten. Do they

> put her at risk? I hate to put him at risk for disease because I have

> seen the horrible effects of pertussis, polio etc but I won't put her

> at risk either.

>

> Thanks for any input. I need to check with the health department too.

> But I know people who have " been there, done that " can tell you so

> much more.

>

> e

>

May 15, 2002

Two weeks ago, my 5 year old with JRA, was given the MMR booster. This is a live vaccine and she should have gotten exempted from having to have this since she is on methotrexate. When on methotrexate, you cannot have the live vaccines which include the chicken pox and the MMR. The polio can be live but usually is not. I had read this but completely forgot. Nikki could not receive her methotrexate shot for 2 weeks and we have had to watch her closely to see if she would get the measles. So far, she has not and is probably ok. The infectious disease folks at the Children's hospital said it would occur in the first 2 weeks after the immunization. They said that 97% are immune from the first MMR which is given at 15 months and this was just catching the other 3%. We are praying that Nikki will not get the measles but I was very upset we had to miss the methotrexate for 2 weeks b/c it is really working well for Nikki.

Chris

Re: immunizations