ER

[Guest guest]

Yeah!!!! , Meaghan and ar very fortunate to have you as their

a mummy. I have some suggestions. It sounds like you got her attention. Find

out the doctors name and call to see if she is taking patients. Write her a

Thank You note and ask her if she has any suggestions for a Pediatrician.She

may be willing to help you find someone since she was concerned. You probably

would not get through to her on the phone but I am sure she would read her

mail.

If not go to the ER each and every time they will find you a doctor because

it is very expensive treatment. The hospital will begin knowing you and the

kids and see the seriousness. They also have to check things out for

liability sake. A doctors office does not have a hospital administration

looking over their shoulder. I am finding all kinds of unorthodox ways to get

through these days. You deserve better understanding atleast if not a great

improvement in care. I am still praying for your family. BARBIE

[Guest guest]

In a message dated 1/27/2003 3:11:48 PM Central Standard Time,

Michdock@... writes:

> Anyhow, I'm back.

>

>

HI

I sure did miss you you and your family were in my prayers while you were

away

Kathy mom to Sara 11

[Guest guest]

Janet,

Sorry to hear about poor Brittany..our Stuart who is also 13 suffers with

Crohn's Disease and when he is suffering, I just feel such anguish for him.

There is just nothing worse than watching your child struggle with health

demons and to feel so helpless yourself to relief them in some way. We send

good thoughts your way and hope she feels better soon!

Jeane

_____

From: BBsmart2@... [mailto:BBsmart2@...]

Sent: Wednesday, October 06, 2004 10:32 PM

Subject: ER

We took Brittany to the ER tonight. Spent hours there. They boulised her

and

gave her IV pain meds and nausea meds. She still had a mild headache after

all that. Stomach was better though. When is this going to end? I mean how

long can this reaction last? Poor kid is miserable. HELP!

Janet, mom to Brittany, CVID, age 13

[Guest guest]

<<

<<> We took Brittany to the ER tonight. Spent hours there. They

boulised her and

> gave her IV pain meds and nausea meds. She still had a mild

headache after

> all that. Stomach was better though. When is this going to end? I

mean how

> long can this reaction last? Poor kid is miserable. HELP!

>

> Janet, mom to Brittany, CVID, age 13

Oh Janet!

How awful for Brittany!

I would think this would mean she couldn't have that same IVIG brand

again ...... Right? Would this *qualify* as a severe reaction? Hope

Ursula or Dale reads this and gives some input. It would be enough to

give me a panic attack if I was Brittany to even think I had to try

the same med again. Did they infuse too fast? I forget if you

mentioned that - sorry!

Sandy

Mom to Riley (age 13, specific antibody deficiency, IVIG, asthma)

[Guest guest]

In a message dated 10/7/2004 2:07:43 PM Eastern Daylight Time,

dale@... writes:

For a

friend of mine who is IgA deficient the reactions were weeks long after

getting IVIG and each successive IV got worse.

Well, what happened with your friend? Did she go off IVIG? Change product?

Janet, mom to Brittany, CVID, age 13

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Janet, I hear you loud and clear. But, I can't make those decisions for

you. I feel very strongly that she needs to be on as low of IgA product

as possible and that means Gammaguard or Polygam, but that's a decision

you and your doctor have got to make -- not me. Others feel that the

speed may be the critical factor -- for Katy speed only causes a

terrific headache that lasts 24-48 hours and then clears. For a

friend of mine who is IgA deficient the reactions were weeks long after

getting IVIG and each successive IV got worse. All I can say is make

sure the prescribing doctor knows everything that is going on and

recognize that you have a right to say, " No more. " You cannot infuse

that into my daughter or something (the speed) has GOT to change.

I know there is a possibility that she'll react even to a new product --

some patients do -- but you have a right to say no more.

In His service,

Dale

BBsmart2@... wrote:

>We took Brittany to the ER tonight. Spent hours there. They boulised her and

>gave her IV pain meds and nausea meds. She still had a mild headache after

>all that. Stomach was better though. When is this going to end? I mean how

>long can this reaction last? Poor kid is miserable. HELP!

>

>

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

She switched to Gammaguard and did fine there for many, many years --

got healthy for the first time in her life, etc., etc. Afer about

10-15 years she had to quit even the Gammaguard because of the reaction

to the little amounts of IgA and is now trying Sub-Q. I haven't heard

how that's going.

I know this is hard. I had such a hard time trying to get the nurses

to slow down the speed of the IV until I realized that it was the

immunologist who writes the prescription that has control over how it's

infused. She didn't think that the speed was too high, but agreed to

try it slower. It didn't help. After 6 months a nurse recommended we

switch products -- and that was what Katy needed. Her pediatrician

agreed to try it and the rest is history. And this was not an IgA

problem -- this was just toleration of a certain product -- which I will

not name because others on this group have found that that product is

exactly what their child needs and reacts to the one Katy uses. Every

patient is different and has different IVIG needs -- it is a fallacy to

believe that all gammaglobulin is identical -- it is not! That's good

because patients have different needs!

I'm praying for you and Brittany to have a clear discussion with your

immunologist or pediatrician or whoever is in charge of ordering IVIG.

Did I send you the Clinical Focus article " Are all IVIG's the same? "

She can't afford the time off from school nor the misery! Something

has got to change! You may need to ask for a second opinion with a

new immunologist if this one won't listen to her pain and act on her

behalf. These are hard decisions.

In His service,

Dale

[Guest guest]

Janet,

Sorry Brittany has had such a rough time, I hope all will get better soon. It is

very hard when your child is suffering and you are trying your best to make them

better. Maybe a change of rate and or product will turn the tide.

mom to CVID, asthma, GERD

ER

We took Brittany to the ER tonight. Spent hours there. They boulised her and

gave her IV pain meds and nausea meds. She still had a mild headache after

all that. Stomach was better though. When is this going to end? I mean how

long can this reaction last? Poor kid is miserable. HELP!

Janet, mom to Brittany, CVID, age 13

[Guest guest]

In a message dated 10/7/2004 5:31:53 PM Eastern Daylight Time,

dale@... writes:

I'm praying for you and Brittany to have a clear discussion with your

immunologist or pediatrician or whoever is in charge of ordering IVIG.

Did I send you the Clinical Focus article " Are all IVIG's the same? "

She can't afford the time off from school nor the misery! Something

has got to change! You may need to ask for a second opinion with a

new immunologist if this one won't listen to her pain and act on her

behalf. These are hard decisions.

Thank you for your prayers. Yes, I just received it thank you so much! I

talked with the doctor here that is doing the IVIG for her immune doctor in

Cleveland. He is going to talk with him he said. I didn't mention the IGA in my

request for a change. I did however say that this one IVIG product may not

agree with her and I left it like that. That way he won't go back to thinking I

am trying to prove him wrong. Which I am not. Some may do fine with Carimune

but my daughter is not one, that's for sure. I told him I was going to bring

him that article you sent me. He was very interested in reading it! I also

told him about the IDF phone # for doctors. He was all for that too. See he is

an neonatal specialist doing this for an Immune specialist. He is however

very interested in this field. Our Immune specialist is supposed to be one of

the top in the United States. He works with the IDF. I have seen him in their

literature. It's very hard finding a new one and most hate to take on another

doctors patient. Then there are the insurance companies! I just have got to

get him to listen to me!!

Janet, mom to Brittany, CVID, age 13

[Guest guest]

In a message dated 10/7/2004 8:03:04 PM Eastern Daylight Time,

rn4premies@... writes:

Sorry Brittany has had such a rough time, I hope all will get better soon.

It is very hard when your child is suffering and you are trying your best to

make them better

,

Thank you for your kind words:)

Janet, mom to Brittany, CVID, age 13

[Guest guest]

In a message dated 10/8/2004 1:55:06 PM Eastern Daylight Time,

mshb@... writes:

He's in the midst of a clinical trial so he has to be seen

every 3 weeks. Prior to the trial, he received the IVIG at home; that was

so convenient!!

May I ask why the trial? I would think home would be nice also.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

In a message dated 10/8/2004 2:51:47 PM Eastern Daylight Time,

mshb@... writes:

The trial was

his decision; he was given all of the information and he said he wanted to

participate, " Because if it helps one kid, it's worth it. " Those are

's exact words.

must be a great kid. You must be so proud of him!

Janet, mom to Brittany, CVID, age 13

[Guest guest]

I

talked with the doctor here that is doing the IVIG for her immune doctor in

Cleveland. I haven't seen anyone in the group from Cleveland. We live about

60 miles west of Cleveland and 's immune. is in Cleveland. He gets

his IVIG is Westlake which is about 30 miles east from us. Boy it sure is a

small world. He's in the midst of a clinical trial so he has to be seen

every 3 weeks. Prior to the trial, he received the IVIG at home; that was

so convenient!!

[Guest guest]

May I ask why the trial? I would think home would be nice also. The

clinical trial is for a new drug/ a stronger drug for IVIG. The trial was

his decision; he was given all of the information and he said he wanted to

participate, " Because if it helps one kid, it's worth it. " Those are

's exact words.

[Guest guest]

That is exactly how I feel. In MY book, they are up to date and that is all

that matters.

Some of you who tell the truth will probably find out why we say that the first

time you take your child to the ER and get harassed over it.

---- bluheron <bluheron@...> wrote:

> I am NOT lying when I say they are up to date on their immunizations, they

> are by my standards, who are they to dictate to me what THEIR standards are,

> they are MY children, not theirs.

>

>

> Western NY

>

>

[Guest guest]

Since I do have legal exemptions in place with the State of NY for all my sons

for several years now and the schools are all aware and honor my legal right to

decline vaccinations, I would have the same expectation of consideration and

respect from any ER worker, unless the circumstances presented a red flag.

We have been to the ER at Stony Brook University Hospital for a a deep slice

wound to my then 2 1/2 year old's finger. Despite my own mother's plea to the

doctor to give my son a tetenus shot, he did not and actually explained to my

mother that he could surgically implant the clean, newly opened can my son cut

himself on into his little body and he wouldn't get tetenus. My husband was

shocked and pleased at this ER doctor's respone. Mind you the man still advised

my husband to get this child vaccinated for future protection, but it did not

interfere with the medical attention my son received and we were not perceived

as negligent parents.

I guess we have been lucky. Maybe my husband got the positive results he did

because he presented himself in a confident, but non-confrontational way.....I

really don't know. Suffice it to say that everyone's experience will be

different and we should all handle these uncomfortable situations the way each

of us sees fit.

One of the reasons I wouldn't lye about it is, God forbid, in the rare

occassion an investigation was conducted and they found out he wasn't, in fact,

up to date with his vaccinations, my credability would down the drain only

worsening an already dangerously delicate perdicament. That just how I happen to

feel abut it; doesn't make it right or wrong.......Anita

Sassygirl1218@... wrote:

That is exactly how I feel. In MY book, they are up to date and that is all

that matters.

Some of you who tell the truth will probably find out why we say that the first

time you take your child to the ER and get harassed over it.

---- bluheron wrote:

> I am NOT lying when I say they are up to date on their immunizations, they

> are by my standards, who are they to dictate to me what THEIR standards are,

> they are MY children, not theirs.

>

>

> Western NY

>

>

[Guest guest]

It all depends on the doctor. My chiropractors are well educated and confident,

yet, were still harassed.

---- Anita Durney <mydurney@...> wrote:

> Since I do have legal exemptions in place with the State of NY for all my sons

for several years now and the schools are all aware and honor my legal right to

decline vaccinations, I would have the same expectation of consideration and

respect from any ER worker, unless the circumstances presented a red flag.

>

> We have been to the ER at Stony Brook University Hospital for a a deep slice

wound to my then 2 1/2 year old's finger. Despite my own mother's plea to the

doctor to give my son a tetenus shot, he did not and actually explained to my

mother that he could surgically implant the clean, newly opened can my son cut

himself on into his little body and he wouldn't get tetenus. My husband was

shocked and pleased at this ER doctor's respone. Mind you the man still advised

my husband to get this child vaccinated for future protection, but it did not

interfere with the medical attention my son received and we were not perceived

as negligent parents.

>

> I guess we have been lucky. Maybe my husband got the positive results he did

because he presented himself in a confident, but non-confrontational way.....I

really don't know. Suffice it to say that everyone's experience will be

different and we should all handle these uncomfortable situations the way each

of us sees fit.

>

> One of the reasons I wouldn't lye about it is, God forbid, in the rare

occassion an investigation was conducted and they found out he wasn't, in fact,

up to date with his vaccinations, my credability would down the drain only

worsening an already dangerously delicate perdicament. That just how I happen to

feel abut it; doesn't make it right or wrong.......Anita

>

> Sassygirl1218@... wrote:

> That is exactly how I feel. In MY book, they are up to date and that is all

that matters.

>

> Some of you who tell the truth will probably find out why we say that the

first time you take your child to the ER and get harassed over it.

>

>

> ---- bluheron wrote:

> > I am NOT lying when I say they are up to date on their immunizations, they

> > are by my standards, who are they to dictate to me what THEIR standards are,

> > they are MY children, not theirs.

> >

> >

> > Western NY

> >

> >

[Guest guest]

Why not just say, " She's fully immunized. " I've never had to go to

the emergency room with my daughter, but this is what I would say

because it's true. She was immunized with 4 years of breastmilk, a

whole foods diet, avoidance of all the crap, and lots of love. She's

naturally immunized. There's no lie here.

Jane Sheppard

Healthy Child

http://www.healthychild.com

> > I am NOT lying when I say they are up to date on their

immunizations, they

> > are by my standards, who are they to dictate to me what THEIR

standards are,

> > they are MY children, not theirs.

[Guest guest]

I might reply with, " If saying she is fully vaccinated means automatically

ruling out a vaccinated for disease; then no she is not vaccinated. "

To often a disease is ruled out merely with a having a history of that

shot,and we all know a vaccinated person can get the diseases they were

vaccinated for.Says that right there in the inserts.

__________________________________________________

[Guest guest]

>

> Why not just say, " She's fully immunized. " I've never had to go to

> the emergency room with my daughter, but this is what I would say

> because it's true. She was immunized with 4 years of breastmilk, a

> whole foods diet, avoidance of all the crap, and lots of love. She's

> naturally immunized. There's no lie here.

>

> Jane Sheppard

> Healthy Child

> http://www.healthychild.com

Jane, this is absolutely brilliant, I love it. I will remember the

phrase about being fully immunized by years of breastfeeding in case I

ever need to use it. Fantastic!!!

Ingrid

>

>

[Guest guest]

I understand this, but I would not be going to the ER with something

like pertussis or any of the diseases kids are vaccinated for, with

the exception of meningitis. I would see a homeopath instead because

that's how pertussis can actually be treated. The only thing I would

be going to the ER for would be an accident or injury of some sort

and then I most definitely want to say she is fully immunized. We

need to be knowledgeable about the diseases. For instance, if you

know the symptoms of meningitis, you will have an idea beforehand and

then you can say " She's immunized, although she is not up to date

with the meningitis vaccine. "

You have to really consider what the outcome may be for your child in

each case. You have to know the diseases and symptoms and know how

the ER and medical system functions. So for an injury, you know they

will want to give a tetanus shot. Even with all the fear they will

spread around tetanus, I know that the booster shot will do no good

whatsoever since she has not had the full 3 shots in the first place

(probably wouldn't do any good even if she did have them). I know I

need to do whatever I can to protect her from the tetanus shot. So I

would say to them " She is fully immunized, and I don't want her to

have a tetanus shot because I know that it will interfere with her

healing from this injury, and it is not necessary anyway. I refuse

the shot and I will take legal action if you proceed with the shot. "

If they press me, I would tell them that I've researched a lot about

the tetanus vaccine and know that it would be detrimental for her

right now with this injury. As long as I said she was fully

immunized, they would probably view me as a " good " , knowledgeable

parent and let go of it. So that's just what I would do. My first

priority is to protect my daughter and if it means coming up with

something that could be considered a lie in order to get around a

faulty medical system that can be damaging to my daughter, then so be

it. I can honestly say, though, that I know and beleive that she is

fully immunized. That's not a lie for me. Everyone needs to do what

feels best for them and their kids. But get it figured out before

something comes up.

Jane

>

> I might reply with, " If saying she is fully vaccinated means

automatically ruling out a vaccinated for disease; then no she is not

vaccinated. "

>

> To often a disease is ruled out merely with a having a history of

that shot,and we all know a vaccinated person can get the diseases

they were vaccinated for.Says that right there in the inserts.

>

>

[Guest guest]

Recently my son (the same one who sliced his hand on an open can) received a

deep puncture wound from a squirrel bite. Because of what you say below about

knowing what the disease/injury is and what that means in terms of treatment

that will be administered at the ER, we decided not to take him. My autistic

son's Homeopath (and several listmembers helped too) recommended treatment. He

was fine and we were able to avoid a potentially ugly scene. That was a truely

empowering event for me and my husband; especially when we had to give an

explanation to certain family members and the school nurse; no lying

required...........Anita

jmshep888 <janeshep@...> wrote:

You have to really consider what the outcome may be for your child in

each case. You have to know the diseases and symptoms and know how

the ER and medical system functions. So for an injury, you know they

will want to give a tetanus shot.

__________________________________________________

[Guest guest]

Anybody here ER fans?

Anne W

[Guest guest]

Yep, sad to see it go. Back when we were struggling with the boys's health real bad, I really wished we had a real life doc like Cloony's character (geesh, stupid fog can't recall the name at the moment).

Anne W

RE: ER

I am, you watching it now?

Hugs, Michele - Nana & DayCare provider to

Twins is and , 2 1/2 yrs., Zachary, 5 yrs.,

Ethan, 9 yrs., and Tony, ~13 yrs. (uhoh, a teenager?)

From: [mailto: ] On Behalf Of Anne WangerSent: Thursday, April 02, 2009 8:13 PMLiving_with_Fibromyalgia_and_Chronic_Pain ; LandOfFibro ; ; Fibromyalgia_Support_Group ; Fibromyalgia_Is_Real ; fibro_chronicpain-support Subject: ER

Anybody here ER fans?

Anne W

[Guest guest]

Dr. Ross. I hated to see him go. I am not staying up to watch the two hours as I have to get up in the morning. But the retrospective was great. I loved seeing everyone again. It will make for great watching this weekend when I have time to see it.

Hugs, Michele - Nana & DayCare provider to

Twins is and , 2 1/2 yrs., Zachary, 5 yrs.,

Ethan, 9 yrs., and Tony, ~13 yrs. (uhoh, a teenager?)

From: [mailto: ] On Behalf Of Anne WangerSent: Thursday, April 02, 2009 9:02 PM Subject: Re: ER

Yep, sad to see it go. Back when we were struggling with the boys's health real bad, I really wished we had a real life doc like Cloony's character (geesh, stupid fog can't recall the name at the moment).

Anne W

RE: ER

I am, you watching it now?

Hugs, Michele - Nana & DayCare provider to

Twins is and , 2 1/2 yrs., Zachary, 5 yrs.,

Ethan, 9 yrs., and Tony, ~13 yrs. (uhoh, a teenager?)

From: [mailto: ] On Behalf Of Anne WangerSent: Thursday, April 02, 2009 8:13 PMLiving_with_Fibromyalgia_and_Chronic_Pain ; LandOfFibro ; ; Fibromyalgia_Support_Group ; Fibromyalgia_Is_Real ; fibro_chronicpain-support Subject: ER

Anybody here ER fans?

Anne W