Re: I'm so mad!!!

[Guest guest]

hi,

We have spent over a year trying to find out what type of autoimmune

disease my 15 yr old has. we have everything from Lupus to Anticardiolipin

Syndrome, to now it might be Crohns. So I have been there were you are and I

am

still there. We have an appointment with Dr From Cinncinati

Childrens

Hospital. He comes here one Tuesday a month. We have an option besides

Rileys children hospital.

Caroline B Milligan

CaCi32@...

_indianaparanormal.com/index.htm_ (http://indianaparanormal.com/index.htm)

www.daledoe.com

[Guest guest]

,

I am so sorry about the situation you are in. I guess to " their type " we

are just hysterical mothers.

When I was young, my mother took me the pediatrician and they got to

chatting and he told her something about " hysterical mothers " (not that she

was one) and said that he always knew that if a DAD brought a child in, the

child was really going to be sick.

Not that your husband would have gotten a different response, but I often

think of the phrase " hysterical mothers " and think that a lot of people

would think we are that way... that we are so absorbed in our children that

we imagine problems that aren't there.

It's such a shame.

The medical profession needs more people like you, actually, .

You would make a great doc.

Caroline

> From: <thecolemans4@...>

> Reply-< >

> Date: Fri, 13 Oct 2006 14:43:26 -0700 (PDT)

> < >

> Subject: I'm so mad!!!

>

> Why in the ...world... (to be polite)

> would they not be concerned?>?>?

>

> I'm sorry to vent, but thank you.

>

[Guest guest]

Can anyone say parallel lives. OMG

Caroline, when i get distraught I make my husband go to the doctor

with my son. Last time I went too and observed a very serious,

scientific conversation going on between the males in the room. My

ped does not blow me off, not at all, but there was a slight enough

change in demeanor that when I have to pull out the male hormones I

do. , it is seriously worth the try.

And , I just got blown off by the Infectious Disease doc. He

was polite, but told me all I have is allergy. (I say what about

the fact I have had 6 weeks of Augmentin this summer, and this white

thick tongue and Im more stuffy now that when I started antibiotics,

he says yes antibiotics will make your tongue white, scrape it, get

allergy tested.)

So in all this running around, I had to vent to my husband, and he

said it is amazing that in all my suffering this past year, not one

doctor has run one blood test or done one culture...just treated

symptoms. It got me to think about why and I wondered if it's

becuuse we are in an HMO and they have a standard, run-of-the-mill

treatment guideline. That is, if you are not deathly ill, and your

insurance is not going to pay much, treat obvious symptoms with a

safe med, and move on. Sorry...me venting again.

All Food for thought , but I think I would see if your

husband would insist to the doc to get the labs re-run.

--- In , <thecolemans4@...>

wrote:

>

> Hi all-

>

> I need to vent! I'm so furious I can't think

> straight.

>

> My 5 yr old has spent most of May thru all of

> September running a low grade temp of 99.8-100.2 on

> average, so tired he wouldn't go play anywhere, had

> very very diminshed eye contact, big changes in his

> speech, memory, just lots of things, and eventually we

> were finally referred to infectious disease, waiting 2

> months of course. At 3 days before he arrives for the

> appointment, the temp stops and he starts perking up a

> bit, but still clearly diminished.

>

> Anyway, they did a lab workup including HHV6 and NK

> activity (the only ones I was particularly interested

> in although others were done too), and the lab lost

> the blood. But because the sed rate came back normal,

> the doctor sees no reason to do any further testing

> and advised us to just return to his pediatrician!

>

> This is after we also attended the appt w/the

> neurologist as advised (although I didn't expect much

> there), but by then his eye contact was so much

> improved. She looked at me like I was absolutely

> crazy and said my little boy is just fine. (Well, I

> can see where she would say that as he was having a

> great day and significantly improved, but ...the

> recent history anybody?)

>

> So ... two specialists have given him the thumbs up.

> And he is still not right, not up to par, this is

> going to happen again, and the one opportunity where

> he was so significantly - so obviously - ill, and

> nobody could freakin' tell! There is nothing normal

> about a child who is so tired that you cannot bribe

> with anything to please just walk across the park to

> the swing - about him simply begging me not to make

> him go to the play ground because he's just too tired,

> and when you force him to anyway (and I mean his

> favorite park) he lays down and cries. (Yes, I

> know... mean mommy.)

>

> I could PUKE. Why in the ...world... (to be polite)

> would they not be concerned?>?>?

>

> I'm sorry to vent, but thank you.

>

>

> __________________________________________________

>

[Guest guest]

Hi!

I too have seen many infectious disease doctors; one in the city we live in

and then one in a neighboring city. They both can see that our daughter's

immune system is compromised--but doesn't know what to do to handle the

situations. We have been dealing with strep bacteria since 2004--but have come

to find out the allergen our daughter reacts severely to has been back in our

home since then--so everything that has been going on with her--is an allergic

reaction. The only doctor so far that really understands my daughter's immune

system is Dr. G and another doctor--who is involved in enviromental medicine.

If you would like to talk more--please give me a call.

Hope this helps.

Have a good day!

Tresa Elengold

512-388-8901

<thecolemans4@...> wrote:

Hi all-

I need to vent! I'm so furious I can't think

straight.

My 5 yr old has spent most of May thru all of

September running a low grade temp of 99.8-100.2 on

average, so tired he wouldn't go play anywhere, had

very very diminshed eye contact, big changes in his

speech, memory, just lots of things, and eventually we

were finally referred to infectious disease, waiting 2

months of course. At 3 days before he arrives for the

appointment, the temp stops and he starts perking up a

bit, but still clearly diminished.

Anyway, they did a lab workup including HHV6 and NK

activity (the only ones I was particularly interested

in although others were done too), and the lab lost

the blood. But because the sed rate came back normal,

the doctor sees no reason to do any further testing

and advised us to just return to his pediatrician!

This is after we also attended the appt w/the

neurologist as advised (although I didn't expect much

there), but by then his eye contact was so much

improved. She looked at me like I was absolutely

crazy and said my little boy is just fine. (Well, I

can see where she would say that as he was having a

great day and significantly improved, but ...the

recent history anybody?)

So ... two specialists have given him the thumbs up.

And he is still not right, not up to par, this is

going to happen again, and the one opportunity where

he was so significantly - so obviously - ill, and

nobody could freakin' tell! There is nothing normal

about a child who is so tired that you cannot bribe

with anything to please just walk across the park to

the swing - about him simply begging me not to make

him go to the play ground because he's just too tired,

and when you force him to anyway (and I mean his

favorite park) he lays down and cries. (Yes, I

know... mean mommy.)

I could PUKE. Why in the ...world... (to be polite)

would they not be concerned?>?>?

I'm sorry to vent, but thank you.

__________________________________________________