Re: Caitlin's Heart Monitor/Yes, the dreaded word - Strep

[Guest guest]

Oh, Patty!

I understand your concern! I'm sorry, but I can't help with the med question,

but I will pray that you and Caitlin both stay well ( & your other dds).

Ruth

[Guest guest]

Hi Patty,

I am glad that the cardiologist felt like things looked ok for Caitlin, I hope

that cutting the caffeine, etc does the trick! Is her rash improving?

Regarding your other question - I don't know about anti-anxiety meds, hopefully

someone else will chime in. I wish I could give you a big hug and help calm

you! I can't even remember for sure, but I think Robbie had an ear infection

not long before he first started having symptoms - though he did have signs of

strep when he was admitted the second time - during the one where the diagnosis

was confirmed - all the docs were sure he had strep - but the cultures came back

negative. He did have a very sore throat - but, at that time I don't think that

there was an area that wasn't inflamed/affected. I guess what I am trying to

say, is that a lot of kids here seem to have had a strep infection that was

probably the trigger for the immune system when everything went haywire - but I

think that just as many had a different infection that was the trigger. Just

like with Robbie's MCD - which was triggered by an infection as well - but it

could have been any infection. The way I see it, Robbie would have ended up

with MCD and JRA, regardless of what infection it was that tipped his immune

system over the edge. That is a fact that I have accepted - and I rarely even

wonder about the trigger or how it happened. Just as any infection could have

been the one that was the trigger - any infection, not just strep - but anything

that triggers the immune system can trigger a flare for Caitline, Robbie, all of

our kids. That is the reality of it. Robbie has seasonal allergies - with them

he gets a sore throat from coughing - as well as from the post nasal drip when

he isn't coughing. His face gets flushed - and he sometimes doesn't feel well.

I have much of the same response to my allergies. Sweetie - don't look for

strep where it isn't. That little girl may have strep - but she may not, and at

this point all you can do is watch Caitlin for signs and act accordingly. I

know you have every reason for your anxiety - and I don't want you to think I

don't understand - I just want you to take a few deep breaths. I do know how

you feel - just say the word chicken pox in a daycare or school setting with my

boy and take a look at my face! (Just want you to know I have my anxiety

triggers too!) - but we have to go with what we know - be ever watchful, but at

the same time we can't keep our kids in a bubble and we can't put on the

isolation gear everytime we get a whiff of trouble. We Can continue protecting

our kids - washing our hands, and ensuring that they wash their hands frequently

(the teacher in Robbie's class encourages frequent hand washing with her

students)and removing them from possible infection - like you did the other

night, but aside from moving to an isolated mountaintop and allowing no visitors

- it is impossible to keep all the bugs away - and have any kind of normal life.

I can't let Arthur win that way. Robbie's nephrologist said something as simple

as a mousquito bite can trigger a flare because of the immune system. I can

spray Robbie to fight the mousquitos - and bring him inside when they are at

their worst - but I can't walk in front of him and shield him from every

mousquito in the world - and I can't stress over it either. (OK - bad example,

if I am in a group of people, including my Robbie, I am often the only one

getting bit by mousquitos! darn things!)

This probably didn't help at all - but I hope you don't take it the wrong way.

I understand, I do, I do, I do - that's why I am sending this hug with love -

and trying to talk you down from the anxiety a little. I don't know what else

to do to help. I wish I could erase all of this worry and concern from our

lives - but with kids, chances are something else would trigger it. Hang in

there sweetie - we are all here for you!

Love,

Val

Rob's Mom (6,systemic)

[Guest guest]

Hi Patty,

Ditto with what Val said,She is so great with words and to meet her in person

is so awesome.You just can't worry about every person that has a sore throat.

For example,earlier in the week I had a horrible sore throat,no fever but

some neck pain and mild gland swelling,or to me it felt like swelling.

Oh how fall is in the air and so beautiful.We have had lows in the 40's and

highs in the low 80's with very low humidity with the exception of Ivan that

dumped 4 " of rain.Change in seasons bring on lots of what I call enviromental

colds.Not true viruses but mother nature being nasty.

We just had our 2 yr safety study visit for Enbrel and I am allergy prone

enough here in Middle Tn.The trip up to s was beutiful,fall wild flowers

screaming pollen,but the white car did not turn green,lol

You know the symptoms so just be cautious and if ANYTHING seems strange by

all means take Caitlin in.I told you before my kids can be bouncing off the

walls and have strep.

Hugs and good luck with this joyful new school yr.

Becki and 6 systemic

[Guest guest]

Patty:

SO glad that Caitlin's monitor came out ok.

As far as the strep, I think that Val said it best...you have the

tendency to have arthritis, and then some germ comes along and sets it

off. It was just the trigger that turned the genetics on, so to speak.

Just watch her as you always do, and take her to the doctor if the signs

present themselves...I know, easier said than done...

One rheumy thought that perhaps since Rob complained of pain on the way

back from 2 weeks in Hawaii, that he had possibly encountered something

there (only thing I could think of were some mosquito bites!) that

triggered his arthritis. Funny, huh Georgina!!

We just don't really know for sure. But as Val again said so eloquently,

if we try to keep them in a bubble, well, it is just not possible or

healthy.

I watched Rob try a stunt on his bike tonight and he had a horrible

wreck. Afterward, I could have kicked myself for not being more vocal

about him not doing it... Thank goodness nothing seems to be broken, only

has a few cuts and bruises, but did hurt his worst joint at the

moment...the right knee. We'll see how he is in the morning. He has been

doing so well. Becki noticed the big difference in how he walks when they

were here yesterday. To me, he is so much more animated, he doesn't have

that pain look on his face. But this wreck was a doozy...so we will see

how he gets up in the morning. I made him use the ice pack on the bad

knee tonight and dosed him with Tylenol before bed.

Patty, I had been having panic attacks waking me up at night after Rob's

kidney diagnosis. I am slowly getting better (as long as I stay away from

car dealerships LOL). We just have to take things one day at a time. I

asked Rob if he worried about his kidneys, and he said no. He said, " Mom,

I live my life one day at a time. I am not going to sit around worrying

about my kidneys " . After that, I have been letting go more. Though every

once in a while it will hit me that some day he may be on dialysis and

waiting for a kidney donor, and then I get pretty anxious. But Rob is so

right. We have to live our lives one day at a time.

I love a saying someone sent me: If God leads you to it, He will lead you

through it...

Patty, I wish you peace.

and Rob 15 Spondy

On Mon, 20 Sep 2004 13:42:45 EDT Emeraldsx3@... writes:

Hi All:

Spoke to the cardiologist today (how I wish he would see me too LOL, he's

awesome and explains things to you) and told me the results of Caitlin's

Holter

Monitor. Everything on the monitor was fine. Normal rhythm, etc. the

whole

time. Caitlin didn't feel like she 'caught' the 'flip flops' (maybe

one), so

that concerns me a bit. She has said that her heart has been behaving

itself

lately. The cardio said it could be indigestion, caffeine intake,

stress,

anxiety type of thing. We can cut out all caffeine, give her Mylanta and

see if

they are gone for good. If she starts having more of them again (2 to 3

times a

week), he will have her wear an event monitor. This one she will wear

for a

few weeks to 'catch' an episode. I do feel better that the heart itself

is

strong (thank God), but I do have a little worry over what exactly she

felt. So

I will just keep an eye on things and take it from there.

Venting here: Yes, it's a strep situation! Alyssa and had a

girl s

cout meeting Sunday and because Caitlin was so 'bored' she wanted to go

and

help out. Now mind you, she is now off the Cefzil! So we are there

cutting out

pumpkins for a reading program for Head Start and one of the girls

announces

to her mom that her throat still hurt! Instant gut panic for me. I

don't

have a cell phone so I borrow another mom's phone and have Mark come and

get

Caitlin. I had used the 'sick' girls mother's phone earlier to check on

something

for the troop - so I used her phone:( I don't want strep either with

MVP.

The mother says that she doesn't have a fever just a sore throat, well

DUH, you

can have NO symptoms of strep and still have it. She said she also has

allergies and assumes that's it and that the girl is fine otherwise.

Within a half

hour the girl is now flushed in the face, not talking, sitting by herself

and

telling her mother that she does not feel well at all! Now I worry about

this until the incubation period is over. I am sending Caitlin to

school, but it

freaks me out when someone is close and says " my throat hurts. " I know

you

can have a sore throat with allergies and colds. So I guess my question

to you

all out here is: Have any of you taken anxiety medication before to help

you

through a difficult period? I am wondering if something like that might

help

take some of the edge off of my panic for Caitlin with strep (and her

sisters

too). I wonder if there is even a med that can help! I know it's a

personal

question, so if anyone is willing to share, but not on the list, please

email

me privately. I really need to do something about this. I can't freak

out

all the time. It's not good for the girls or me.

Thanks all. Take care.

Patty

[Guest guest]

-Patty,

Im glad to read that all is well with Caitlins heart, structurely. I

hope everything settles down soon...

Now on to you young lady, time to take a deep breath and relax, you

are working yourself into a frenzy over this strep. Perhaps we need

to ban the word from the list and then you can relax *a little* ))

I have accepted the fact that will get strep again, no

matter what I do to try and stop it. Perhaps you need to do this

too. While i will be nervous about this, and even if it does cause a

flare I now know what we can overcome it and treat it. Worrying

about the *what ifs* is just going to make us crazy. I refuse to

allow this disease to do that to our family, so we live each day as

it comes and face whatever might be, if and when it happens.

Now I dont want to sound all preachy and I hope you know me enough

by now to know i just care and I worry about you and thats why im

saying this. Heres something positive to think about. While Nicks

bout of strep in December did cause his major flare last winter, he

also did get strep again in the Spring and it did NOTHING ))) So

keep this in mind, if Caitlin did get strep, it might not mean

anything ))

Hang in there girl and take care of yourself.

Hugs Helen and (7,systemic)

-- In , Emeraldsx3@a... wrote:

> Hi All:

>

> Spoke to the cardiologist today (how I wish he would see me too

LOL, he's

> awesome and explains things to you) and told me the results of

Caitlin's Holter

> Monitor. Everything on the monitor was fine. Normal rhythm, etc.

the whole

> time. Caitlin didn't feel like she 'caught' the 'flip flops'

(maybe one), so

> that concerns me a bit. She has said that her heart has been

behaving itself

> lately. The cardio said it could be indigestion, caffeine intake,

stress,

> anxiety type of thing. We can cut out all caffeine, give her

Mylanta and see if

> they are gone for good. If she starts having more of them again

(2 to 3 times a

> week), he will have her wear an event monitor. This one she will

wear for a

> few weeks to 'catch' an episode. I do feel better that the heart

itself is

> strong (thank God), but I do have a little worry over what exactly

she felt. So

> I will just keep an eye on things and take it from there.

>

> Venting here: Yes, it's a strep situation! Alyssa and

had a girl s

> cout meeting Sunday and because Caitlin was so 'bored' she wanted

to go and

> help out. Now mind you, she is now off the Cefzil! So we are

there cutting out

> pumpkins for a reading program for Head Start and one of the girls

announces

> to her mom that her throat still hurt! Instant gut panic for me.

I don't

> have a cell phone so I borrow another mom's phone and have Mark

come and get

> Caitlin. I had used the 'sick' girls mother's phone earlier to

check on something

> for the troop - so I used her phone:( I don't want strep either

with MVP.

> The mother says that she doesn't have a fever just a sore throat,

well DUH, you

> can have NO symptoms of strep and still have it. She said she

also has

> allergies and assumes that's it and that the girl is fine

otherwise. Within a half

> hour the girl is now flushed in the face, not talking, sitting by

herself and

> telling her mother that she does not feel well at all! Now I

worry about

> this until the incubation period is over. I am sending Caitlin to

school, but it

> freaks me out when someone is close and says " my throat hurts. " I

know you

> can have a sore throat with allergies and colds. So I guess my

question to you

> all out here is: Have any of you taken anxiety medication before

to help you

> through a difficult period? I am wondering if something like that

might help

> take some of the edge off of my panic for Caitlin with strep (and

her sisters

> too). I wonder if there is even a med that can help! I know it's

a personal

> question, so if anyone is willing to share, but not on the list,

please email

> me privately. I really need to do something about this. I can't

freak out

> all the time. It's not good for the girls or me.

>

> Thanks all. Take care.

> Patty

>

>

>