Flu shots

October 6, 2004

In a message dated 10/6/2004 7:44:18 PM Pacific Standard Time,

ercokat@... writes:

According to the CDC Guidelines, as the primary caregiver we are not in the

" priority group " to get a flu shot.

,

I guess I am because I have autoimmune disease. So this puts me in the

high risk group. My Internist always saves me a shot. But even before this, I

have always been the only caregiver and I have insisted on it. If I get sick,

there isn't anyone to help out.

Sandi, Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral valve stenosis, chronic ear, nose and throat

infections, asthma, severe allergies (including meds), Carnitine deficiency,

GERD,

suspected Di syndrome.

October 6, 2004

In a message dated 10/6/2004 6:38:39 PM Eastern Daylight Time,

dale@... writes:

However, people allergic to eggs should not receive the vaccine, as

there is a risk for more serious reactions.

This would leave me out.

Janet, mom to Brittany, CVID, age 13

October 6, 2004

According to the CDC Guidelines, as the primary caregiver we are not in the

" priority group " to get a flu shot. Our kids are, but we are not unless our

children are 6 months or younger. This is why I am so concerned. And the

pharmacies around me that are giving the flu vaccines are going to follow the

CDC guidelines.

I don't know why the CDC doesn't recognize that caregivers of PID kids need to

be a priority.

Is anyone else upset that they may not be able to get a flu shot this year? I

have been stressing about it all day. What if I get the flu, and even though

has had the shot she still gets it from me (because the flu shot doesn't

give complete immunity from it), or what if I get so sick I can't take care of

my kids? Sigh ...

, Mom to , 4, IgA Deficiency, Asthma, Chronic Ear/Sinus Infections

and Connor, 6

Re: Flu Shots

In a message dated 10/6/2004 2:39:41 PM Pacific Standard Time,

ercokat@... writes:

Do you always get a flu shot? I'm just wondering if anyone has given their

kid the flu even after their child has had the shot and the parent hasn't!

Yes, I do. Since I am his only caregiver, I can't afford to be sick!!

Sandi, Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral valve stenosis, chronic ear, nose and

throat

infections, asthma, severe allergies (including meds), Carnitine deficiency,

GERD,

suspected Di syndrome.

October 6, 2004

Dale, That was my thought. Get the IDF involved for our kids. My ped wants

my whole family vaccinated, I waited last year...because I've heard the

vaccine doesn't always last through the whole flu season and up here in ND we

haven't seen any cases until late November typically, but we've had cases into

March, UGH. But got Influena A and ended up hospitalized with

dehydration. So....we are scheduled at the ped office for as soon as they get

their vaccine. I'm going to call tomorrow and see what Dr. McDonough says.

He's pretty cautious. I'm fortunate as i'm a health care provider and my

husband qualifies as he's insulin dependant diabetic. Guess all this medical

stuff may come in handy. Thanks for calling the IDF for our kids' sake.

Quoting Dale Weatherford <dale@...>:

>

> from Dale, Mom to Katy, CVID, age 20

>

> I have taken the liberty of contacting IDF and asking if they can do any

>

> intervention with CDC -- I know that they work closely with them. . If

>

> you have been turned down for a flu-shot based on CDC guidelines, please

>

> give IDF a call at 1-800-296-0866.

>

> And you also need to contact your immunologist and ask what they

>

> recommend you do in order to obtain vaccination.

>

> I'll let you know what I hear -- but I know it won't be before tomorrow!

>

> In His service,

>

> Dale

>

> Tweed wrote:

>

> > According to the CDC Guidelines, as the primary caregiver we are not in

> the " priority group " to get a flu shot. Our kids are, but we are not unless

> our children are 6 months or younger. This is why I am so concerned. And

> the pharmacies around me that are giving the flu vaccines are going to follow

> the CDC guidelines.

>

> >

>

> >

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

>

> To search group archives go to:

> /messages

>

October 7, 2004

:

What the immuno and ped told us is that as a household member with a PID

child, our whole family is on the " A " list, that is, we are first in line for

flu

shots. always gets two flu shots, one at the beginning of the season and

one at least a month later, and she has never gotten the flu! That doesn't

mean it's any guarantee of course, just our great luck so far. I'm calling my

doc today to remind her my husband and I need the shot and should get priority

(nicely, of course), in case my local pharmacy doesn't get it or doesn't get

enough. Personally, even though we are not financially well off, I'd pay just

about anything I had to to get it.

Funny thing is my non-PID child is the one who got the flu last year! Not

that funny, actually, she was pretty sick and ended up on Tamiflu, which I swear

is the absolutely most horrendous tasting, foul substance on the earth! I

dunno if it helped, but she needed it and ended up fine.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)

October 7, 2004

In a message dated 10/7/2004 2:30:16 PM Eastern Daylight Time,

rn4premies@... writes:

is also allergic to eggs, I think it would depend on how allergic

you are. she has gotten her flu shot every year without a problem. They just

watch her for a while to see if she reacts.

,

Thank you! Really, I am not allergic because I do eat them once in a while.

My allergy doctor told me not to though. I bet it would be OK.

Janet, mom to Brittany, CVID, age 13

October 7, 2004

Janet,

is also allergic to eggs, I think it would depend on how allergic you

are. she has gotten her flu shot every year without a problem. They just watch

her for a while to see if she reacts.

mom to CVID, asthma, GERD

Re: Flu shots

In a message dated 10/6/2004 6:38:39 PM Eastern Daylight Time,

dale@...<mailto:dale@...> writes:

However, people allergic to eggs should not receive the vaccine, as

there is a risk for more serious reactions.

This would leave me out.

Janet, mom to Brittany, CVID, age 13

October 7, 2004

Janet,

gets hives from eggs, she had a TERRIBLE reaction to her MMR vaccine,

hives everywhere , she was on Prednisone for 20 days, they tried 5 days but they

came back, anyway, she doesn't have problems with the flu shot, go figure.

We are having the same problems finding a shot for , her Ped, Ped Pulm

and Immuno all do not have any at all. I called our county, they are having a

meeting tomorrow and the woman I talked to said should be tops on the

list to get one. So I'm hopeful that at least she may get one. Probably not Tom

or I, but I am more concerned with her right now.

Mom to - CVID, asthma, GERD

Re: Flu shots

In a message dated 10/7/2004 2:30:16 PM Eastern Daylight Time,

rn4premies@...<mailto:rn4premies@...> writes:

is also allergic to eggs, I think it would depend on how allergic

you are. she has gotten her flu shot every year without a problem. They just

watch her for a while to see if she reacts.

,

Thank you! Really, I am not allergic because I do eat them once in a while.

My allergy doctor told me not to though. I bet it would be OK.

Janet, mom to Brittany, CVID, age 13

October 7, 2004

Hi -

's Immunologist told us that, too. Unfortunately, Dale's post about the

IDF calling the CDC isn't very promising. That's why I told a white lie to get

a flu shot today. If the IDF can't convince the CDC to add us parents of PID

kids, then I'm not going to convince the nurse at the pharmacy how important it

is.

They had a checklist of the CDC guidelines, and said unless you fit one of

them you weren't getting a flu shot (although they kept telling people to go to

their physician and get the flu mist). I don't think my husband will be able to

get one, although he gets bronchitis that he can't get rid of for months almost

every flu season, but he isn't around as much as I am. If he gets sick

I'll lock him up in the bedroom and keep her away from him!

I've heard that Tamiflu works pretty well, though!

BTW, I always think of you as " Bunny Girl " ... not ! I had to look down

and read your name, because I was going to say " Bunny " . That's a cute e-mail

address!

, Mom to , 4, IgA Deficient, Asthma, Chronic Ear/Sinus Infections and

Connor, 6

:

What the immuno and ped told us is that as a household member with a PID

child, our whole family is on the " A " list, that is, we are first in line

for flu

shots. always gets two flu shots, one at the beginning of the season

and

one at least a month later, and she has never gotten the flu! That doesn't

mean it's any guarantee of course, just our great luck so far. I'm calling

my

doc today to remind her my husband and I need the shot and should get

priority

(nicely, of course), in case my local pharmacy doesn't get it or doesn't get

enough. Personally, even though we are not financially well off, I'd pay

just

about anything I had to to get it.

Funny thing is my non-PID child is the one who got the flu last year! Not

that funny, actually, she was pretty sick and ended up on Tamiflu, which I

swear

is the absolutely most horrendous tasting, foul substance on the earth! I

dunno if it helped, but she needed it and ended up fine.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)

October 7, 2004

Okay. So here I am, all geared up for a battle to get the flu shots for the

whole family.

The local health dept said, " Of COURSE your family will be priority since your

son has a PID. We haven't received our vaccine. We usually don't get it until

the end of October or 1st part of November. Keep calling, every week if you

want, until we get it so you can get in quickly. " (We have an excellent county

health clinic.) I hung up happy, then thought, " I think I'll find out when my

doc's clinic will get it and see how much it'll cost there. " So I call. I now

have an appointment set up for this Wednesday for me and the girls to get it

(Sam has to wait til the mid-point between his IVIG, so he is set up for 2 weeks

from tomorrow.) They are covered by state insurance and mine will be $18, just

a little more than the cost at the health clinic, which I think was $13 last

year. But this is the real kicker. When I was asking about whether or not our

family would be included on the priority list, I was told, " Well, your family

really needs to get it if you have someone living with you that is immune

comprimised. But the CDC guidelines don't apply to us anyway since we are a

private practice. As long as you are a regular patient at the clinic, we can

give it to you. "

Anyway, I've said all of this to say, you may be able to get it through your

private doctor's office without the hassle you may get through the pharmacy or

health department. You might pay more, but apparently there is not the same

standard applied to the private practices (maybe they buy theirs directly from

the manufacturer?????) as to general public. ly, the health of my child is

worth the extra dollars.

While I'm tickled pink to be getting the shots in a timely manner, I have to

admit some amount of aggravation about the fact that what this pretty much means

is that people with low incomes and no insurance are pretty much out of luck.

ly, since Sam was so ill as a baby (no insurance at the time), we've been

there and it's no fun. There are so many people who don't have money to get a

lousy shot, get sick, then miss weeks of work, and end up in even more in the

hole.

We've recently actually gotten insurance through my husband's new job (first

time I've had insurance in about 9 years) and it is such a relief! The kids

still qualify for state insurance (which has been phenominal). I've just been

on cloud 9.....I get to have my teeth checked, I get to have new glasses.....

But I really feel for those who are getting left behind because of their

finances.

Well, this girl better get to bed. We're headed to AR Children's Hospital in

the a.m.

God bless,

Wenoka (getting off the soap box) Mom to AMY - 10 / Sam - 7, Hyper IgM, Sensory

Integration Disorder, Seizure Disorder / Christi - 3, still has active EBV)

October 7, 2004

Hello all,

My husband and I just got our flu shot yesterday! No questions asked through

our regular internist. Neither one of us has ever had one before, but Chris'

Immunologist said the whole family should get one, except for Chris. He has

CVID and had zero antibody response.

I can say I have had the flu twice, both times I was pregnant, and I thought I

was going to die. I have never been so sick in my life other than those two

times, so when I think of my PID kid getting that sick, it scares me to death!

My husband didn't want to get the shot...he was fighting me on it saying, " I

don't get the flu, I don't need it " . I told him " The Dr. said to get it to

protect - We are getting it to protect PERIOD! He did. It's one

thing if you can't get it, it's another if you choose not to after being told.

Then, if god forbid something happens....ugh.

Also, when I went for the vaccine, I told the nurse I felt like I was getting

sick. She said I better not get it. I asked her, " Will it kill me? She said,

" No, you will get sicker and feel like poop. I was afraid if I left without

getting it, they would withhold them and not give me one later...so I took my

chances and got it anyway. So far so good, I'm still here. She explained to me

that you don't get the flu after the shot, but some people think they do because

something may have been brewing first and the immune system was already working.

Then you get the vaccine and stretch your immune system even more...causing you

to feel sick. That made sense to me.

Anyway, good luck to all of you trying to get your shots!

Kim, Mom to (CVID)

Re: Flu Shots

>

> Okay. So here I am, all geared up for a battle to get the flu

> shots for the whole family.

>

> The local health dept said, " Of COURSE your family will be

> priority since your son has a PID. We haven't received our

> vaccine. We usually don't get it until the end of October or 1st

> part of November. Keep calling, every week if you want, until we

> get it so you can get in quickly. " (We have an excellent county

> health clinic.) I hung up happy, then thought, " I think I'll find

> out when my doc's clinic will get it and see how much it'll cost

> there. " So I call. I now have an appointment set up for this

> Wednesday for me and the girls to get it (Sam has to wait til the

> mid-point between his IVIG, so he is set up for 2 weeks from

> tomorrow.) They are covered by state insurance and mine will be

> $18, just a little more than the cost at the health clinic, which

> I think was $13 last year. But this is the real kicker. When I

> was asking about whether or not our family would be included on

> the priority list, I was told, " Well, your family really needs to

> get it if you have someone living w

> ith you that is immune comprimised. But the CDC guidelines don't

> apply to us anyway since we are a private practice. As long as

> you are a regular patient at the clinic, we can give it to you. "

>

> Anyway, I've said all of this to say, you may be able to get it

> through your private doctor's office without the hassle you may

> get through the pharmacy or health department. You might pay

> more, but apparently there is not the same standard applied to the

> private practices (maybe they buy theirs directly from the

> manufacturer?????) as to general public. ly, the health of

> my child is worth the extra dollars.

>

> While I'm tickled pink to be getting the shots in a timely manner,

> I have to admit some amount of aggravation about the fact that

> what this pretty much means is that people with low incomes and no

> insurance are pretty much out of luck. ly, since Sam was so

> ill as a baby (no insurance at the time), we've been there and

> it's no fun. There are so many people who don't have money to get

> a lousy shot, get sick, then miss weeks of work, and end up in

> even more in the hole.

>

> We've recently actually gotten insurance through my husband's new

> job (first time I've had insurance in about 9 years) and it is

> such a relief! The kids still qualify for state insurance (which

> has been phenominal). I've just been on cloud 9.....I get to have

> my teeth checked, I get to have new glasses..... But I really

> feel for those who are getting left behind because of their finances.

>

> Well, this girl better get to bed. We're headed to AR Children's

> Hospital in the a.m.

>

> God bless,

>

> Wenoka (getting off the soap box) Mom to AMY - 10 / Sam - 7, Hyper

> IgM, Sensory Integration Disorder, Seizure Disorder / Christi - 3,

> still has active EBV)

>

October 8, 2004

In a message dated 10/7/2004 7:56:04 PM Eastern Daylight Time,

rn4premies@... writes:

but I am more concerned with her right now.

Yeah, I would be also.

Janet

October 12, 2004

Hey Amy,

I hear you - its CHAOS out *there* the one old lady I saw on the news looked

like she was told she will DIE.

What fliers do you have?

Chelly

Owner of:

http://www.diapertesters.com

Flu shots

I have to write in my frustration of the news and this flu shot stuff. I am

so sickened to see my local news at the local grocery store giving out numbers

to get this darn shot. There was an old lady on there practially in tears that

she couldnt get the vaccine. They just dont even know what virus will hit

this year. Speaking of an epidemic will happen since there isnt enough vaccine

BLAHHHHH.

Uggh this is so frustrating. I am going to hand out my flu vaccine fliers

today

AMY

October 13, 2004

Aghhh! Wash your hands often! Avoid crowds. Wear a mask when you leave the house. Take vitamin C. Wear a garlic necklace. (Oh, maybe that was to ward off vampires.)

My PCP has no vaccine. Said I needed to try to find some place that still has some. Awful.

Flu shots

Is everyone prepared for the flu season? isn't. No shots to be had in our area. Called the local news station and gave them a piece of my mind (what is left of it). They said there are enough to go around in our area. Funny 's primary did not get any. The hospital said they did not have any. 140 clinics in our area have been canceled. The nurse came today to check on (her weekly) and said to keep an eye on him. He is achy and has a temp. The man upstairs from us has the flu. The woman down the hall is in the hospital with the flu. As I told the reporter I feel this is a form of euthanasia when the ill who qualify for the shot can not get it. Little rough with the words, but after 3 hours of trying to see where we can get the shot I get testy.

My grandson who has RSVP got lucky. His doctor had only so many shots to give and he drew names out of a hat. My grandson will get a shot. This is a terrible way to have to deal with things.

Sorry if I got someone upset - venting helps.

GailPlease visit the Zapper homepage athttp://www.ZapLife.org

October 13, 2004

Gail... it's the same here in southern NJ... I've been calling my

PCP's office for over 3 wks now... they ordered vaccine last year and

have yet to get their supply, local clinics are being cancelled left

and right, the ACME had 100 shots available yesterday, but you had to

be a member of their pharmacutical dept, which we aren't ... to

say just wash your hands and stay away from those that are sick

doesn't cut if for me... I see far too many persons NOT washing their

hands and hear 'em hackin' while I'm out in public... I'm thinking

maybe it should be a misdemeanor if you're caught out in public while

sick or found leaving a public rest room before washing your hands,

right??? ... to live in this country and find ourselves in this

situation seems unreal to me... why are there so few companies

manufacturing the vaccine???

JES in NJ, USA

> Is everyone prepared for the flu season? isn't. No shots to

be had in our area. Called the local news station and gave them a

piece of my mind (what is left of it). They said there are enough to

go around in our area. Funny 's primary did not get any. The

hospital said they did not have any. 140 clinics in our area have

been canceled. The nurse came today to check on (her weekly)

and said to keep an eye on him. He is achy and has a temp. The man

upstairs from us has the flu. The woman down the hall is in the

hospital with the flu. As I told the reporter I feel this is a form

of euthanasia when the ill who qualify for the shot can not get it.

Little rough with the words, but after 3 hours of trying to see where

we can get the shot I get testy.

>

> My grandson who has RSVP got lucky. His doctor had only so many

shots to give and he drew names out of a hat. My grandson will get a

shot. This is a terrible way to have to deal with things.

>

> Sorry if I got someone upset - venting helps.

>

> Gail

October 13, 2004