Tamiflu

[Guest guest]

In a message dated 3/12/2006 8:19:45 PM Central Standard Time,

osdbmom@... writes:

> But, he

> kept on the tamiflu and keflex, and one or the other of them made his

> stomach sick. But, I force fed him the meds and kept him locked in the

> bedroom till I was sure he wouldnt make the kids sick!!LOL one sick

> hubby is better than 4 sick kids!!

Valarie, two points:

#1 Keflex KILLS my stomach. Ugh. I've never had anything that hurt my guts as

bad as that stuff.

#2 " One sick hubby is better than 4 sick kids " -- I'd like to point out that

One Sick Hubby is the Equivalent of Four Sick Kids!!!!!!!!!!!! Man, when my

DH gets a cold, you'd think it was Ebola.

(mom to , age 7, dairy intolerant-related GERD -- currently has

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

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

One of my sons has taken tamiflu w/o any known problems.

Peace of Christ be with you,

Pattie

Prayer

Dear Lord, when I am consumed by daily concerns, help me to look beyond

myself to bless others with positive words and actions. Amen.

_____

From: [mailto: ] On Behalf Of

osdbmom

Sent: Wednesday, January 23, 2008 12:31 PM

Subject: Tamiflu

Hi guys,

for about a week, my oldest daughter(asthma, no PID) has been sick,

first with the very sore throat and tired, then a never ending cough

that xopenex isnt touching, and now has had a couple days of

sweats/chills. Monday night, my 9 yr old daughter(severe asthma, CVID)

complained of sore throat, and yesterday could hardly swallow, so I

took them both into the family dr. She felt that when I was sick for a

couple weeks recently, I had the flu(the real one, not pukey flu),

which would have been nice to know:) I would have stayed in bed

instead of driving though three states last week!, and now Olivia is

in the midst of it, and most l ikely its what Savannah is coming down

with. I was concerned, bc her asthma has been really bad lately, with

her last PFTS showing small airways in the twenties, and all the other

numbers were quite low as well---obviously, we dont want any infection

getting into her chest, so I asked the dr about Tamiflu for her, since

it was only the second day of her not feeling well. She sort of hemmed

and hawed about it, and said there are new warning about giving it to

kids, and she was reluctant, but since I *wanted* it, she'd do it, if

thats really what I wanted. Its not that i WANTED it, but I feel a

little nervous about this kid, and I guess I feel that a rare possible

side effect is a decent trade for her not causing more damage to her

lungs, with as poor of shape as they are in. Last yr, Savannah had the

flu and the leftover asthma problems for two months! so we got the script.

I read the pamphlet but didnt see any terrible possible problems for

kids from it.........Im wondering what that might be? She has been on

Tamiflu before, with no problems.

thanks,

valarie

mom to three with CVID

[Guest guest]

One of my sons has taken tamiflu w/o any known problems.

Peace of Christ be with you,

Pattie

Prayer

Dear Lord, when I am consumed by daily concerns, help me to look beyond

myself to bless others with positive words and actions. Amen.

_____

From: [mailto: ] On Behalf Of

osdbmom

Sent: Wednesday, January 23, 2008 12:31 PM

Subject: Tamiflu

Hi guys,

for about a week, my oldest daughter(asthma, no PID) has been sick,

first with the very sore throat and tired, then a never ending cough

that xopenex isnt touching, and now has had a couple days of

sweats/chills. Monday night, my 9 yr old daughter(severe asthma, CVID)

complained of sore throat, and yesterday could hardly swallow, so I

took them both into the family dr. She felt that when I was sick for a

couple weeks recently, I had the flu(the real one, not pukey flu),

which would have been nice to know:) I would have stayed in bed

instead of driving though three states last week!, and now Olivia is

in the midst of it, and most l ikely its what Savannah is coming down

with. I was concerned, bc her asthma has been really bad lately, with

her last PFTS showing small airways in the twenties, and all the other

numbers were quite low as well---obviously, we dont want any infection

getting into her chest, so I asked the dr about Tamiflu for her, since

it was only the second day of her not feeling well. She sort of hemmed

and hawed about it, and said there are new warning about giving it to

kids, and she was reluctant, but since I *wanted* it, she'd do it, if

thats really what I wanted. Its not that i WANTED it, but I feel a

little nervous about this kid, and I guess I feel that a rare possible

side effect is a decent trade for her not causing more damage to her

lungs, with as poor of shape as they are in. Last yr, Savannah had the

flu and the leftover asthma problems for two months! so we got the script.

I read the pamphlet but didnt see any terrible possible problems for

kids from it.........Im wondering what that might be? She has been on

Tamiflu before, with no problems.

thanks,

valarie

mom to three with CVID

[Guest guest]

I think there was some concern about neuro effects/abnormal behavior in a few

children--which led to accidents. I'd keep an eye on them, if you are worried.

I took Tamiflu recently and it made my heart race (fight or flight

reaction...probably not that different from steroids).

Tamiflu

Hi guys,

for about a week, my oldest daughter(asthma, no PID) has been sick,

first with the very sore throat and tired, then a never ending cough

that xopenex isnt touching, and now has had a couple days of

sweats/chills. Monday night, my 9 yr old daughter(severe asthma, CVID)

complained of sore throat, and yesterday could hardly swallow, so I

took them both into the family dr. She felt that when I was sick for a

couple weeks recently, I had the flu(the real one, not pukey flu),

which would have been nice to know:) I would have stayed in bed

instead of driving though three states last week!, and now Olivia is

in the midst of it, and most l ikely its what Savannah is coming down

with. I was concerned, bc her asthma has been really bad lately, with

her last PFTS showing small airways in the twenties, and all the other

numbers were quite low as well---obviously, we dont want any infection

getting into her chest, so I asked the dr about Tamiflu for her, since

it was only the second day of her not feeling well. She sort of hemmed

and hawed about it, and said there are new warning about giving it to

kids, and she was reluctant, but since I *wanted* it, she'd do it, if

thats really what I wanted. Its not that i WANTED it, but I feel a

little nervous about this kid, and I guess I feel that a rare possible

side effect is a decent trade for her not causing more damage to her

lungs, with as poor of shape as they are in. Last yr, Savannah had the

flu and the leftover asthma problems for two months! so we got the script.

I read the pamphlet but didnt see any terrible possible problems for

kids from it.........Im wondering what that might be? She has been on

Tamiflu before, with no problems.

thanks,

valarie

mom to three with CVID

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[Guest guest]

I think there was some concern about neuro effects/abnormal behavior in a few

children--which led to accidents. I'd keep an eye on them, if you are worried.

I took Tamiflu recently and it made my heart race (fight or flight

reaction...probably not that different from steroids).

Tamiflu

Hi guys,

for about a week, my oldest daughter(asthma, no PID) has been sick,

first with the very sore throat and tired, then a never ending cough

that xopenex isnt touching, and now has had a couple days of

sweats/chills. Monday night, my 9 yr old daughter(severe asthma, CVID)

complained of sore throat, and yesterday could hardly swallow, so I

took them both into the family dr. She felt that when I was sick for a

couple weeks recently, I had the flu(the real one, not pukey flu),

which would have been nice to know:) I would have stayed in bed

instead of driving though three states last week!, and now Olivia is

in the midst of it, and most l ikely its what Savannah is coming down

with. I was concerned, bc her asthma has been really bad lately, with

her last PFTS showing small airways in the twenties, and all the other

numbers were quite low as well---obviously, we dont want any infection

getting into her chest, so I asked the dr about Tamiflu for her, since

it was only the second day of her not feeling well. She sort of hemmed

and hawed about it, and said there are new warning about giving it to

kids, and she was reluctant, but since I *wanted* it, she'd do it, if

thats really what I wanted. Its not that i WANTED it, but I feel a

little nervous about this kid, and I guess I feel that a rare possible

side effect is a decent trade for her not causing more damage to her

lungs, with as poor of shape as they are in. Last yr, Savannah had the

flu and the leftover asthma problems for two months! so we got the script.

I read the pamphlet but didnt see any terrible possible problems for

kids from it.........Im wondering what that might be? She has been on

Tamiflu before, with no problems.

thanks,

valarie

mom to three with CVID

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[Guest guest]

What you describe is not unusual for our household. If one of us gets sick,

starts antibiotics or Tamiflu, depending on our symptoms. Mine and my

husbands primary knows our circumstances, and hands us a script for

whenever she prescribes antibiotics for us. Same goes for the peds doctor w/

his brother. If his brother is sick, the peds also writes a script for

. As a note, our primary and the peds doc all communicate with the

immunologist regularly so writing a script is not arbitrary.

We now have a stock pile of Tamiflu and Zpac's to give as necessary. We just

call the immunologist to let him know is taking it, and why.

If there is someone who has been obviously sick at school, we will also

start him on meds. It is a small school, so illness is easy to see.

I also dislike him being on meds for someone else being sick, but it works,

keeps him healthy, so what is the alternative?

There have been times when he has done Tamiflu for up to 30 days (last

winter) he was sick first, then me, then his brother. Dose 2 and 3 (days

11-30) kept him from getting it again.

BTW, does anyone have thoughts about the H1N1 Vaccine? Will you be giving it

to your kids with PID? Without PID?

On Sun, Sep 13, 2009 at 4:56 PM, Amy <mom2lilnick@...> wrote:

>

>

> Hi all,

>

> I have some questions about Tamiflu. Yesterday I came down with some pretty

> good signs of the flu. I called our immuno's office and explained what I was

> going thru and they said.. yep sounds like the flu. I asked if I should go

> and get tested and they said no, they weren't testing for it anymore. They

> called in an rx for Nick for Tamiflu.

>

> So he is supposed to take it for 10 days. Has anyone else's kids taken it

> when someone else in the house was sick but not them? I feel really weird

> giving him this med when he isn't sick.

>

> Also, what if I give him Tamiflu and 2 weeks later he still gets the flu?

> Will he have to do the Tamiflu again? I work at his school and there have

> been a ton of kids out with suspected H1N1, so I know where I got it from

> and I know it is still going to be going around school for awhile.

>

> Also what side effects should I look for in giving this to him with no flu

> symptoms?

>

> Amy,

> mom to Nick 6 CVID.

>

>

[Guest guest]

What you describe is not unusual for our household. If one of us gets sick,

starts antibiotics or Tamiflu, depending on our symptoms. Mine and my

husbands primary knows our circumstances, and hands us a script for

whenever she prescribes antibiotics for us. Same goes for the peds doctor w/

his brother. If his brother is sick, the peds also writes a script for

. As a note, our primary and the peds doc all communicate with the

immunologist regularly so writing a script is not arbitrary.

We now have a stock pile of Tamiflu and Zpac's to give as necessary. We just

call the immunologist to let him know is taking it, and why.

If there is someone who has been obviously sick at school, we will also

start him on meds. It is a small school, so illness is easy to see.

I also dislike him being on meds for someone else being sick, but it works,

keeps him healthy, so what is the alternative?

There have been times when he has done Tamiflu for up to 30 days (last

winter) he was sick first, then me, then his brother. Dose 2 and 3 (days

11-30) kept him from getting it again.

BTW, does anyone have thoughts about the H1N1 Vaccine? Will you be giving it

to your kids with PID? Without PID?

On Sun, Sep 13, 2009 at 4:56 PM, Amy <mom2lilnick@...> wrote:

>

>

> Hi all,

>

> I have some questions about Tamiflu. Yesterday I came down with some pretty

> good signs of the flu. I called our immuno's office and explained what I was

> going thru and they said.. yep sounds like the flu. I asked if I should go

> and get tested and they said no, they weren't testing for it anymore. They

> called in an rx for Nick for Tamiflu.

>

> So he is supposed to take it for 10 days. Has anyone else's kids taken it

> when someone else in the house was sick but not them? I feel really weird

> giving him this med when he isn't sick.

>

> Also, what if I give him Tamiflu and 2 weeks later he still gets the flu?

> Will he have to do the Tamiflu again? I work at his school and there have

> been a ton of kids out with suspected H1N1, so I know where I got it from

> and I know it is still going to be going around school for awhile.

>

> Also what side effects should I look for in giving this to him with no flu

> symptoms?

>

> Amy,

> mom to Nick 6 CVID.

>

>

[Guest guest]

Amy,

We have had to give our son (a ten-year old with hypogammaglobulinemia) Tamiflu

when another family member contracted the flu. Although he had some minor side

effects associated with the Tamiflu (mainly stomach pains), it did prevent him

from getting the flu.

This year the immunologist is recommending that we give him Tamiflu after

" direct contact " with anyone with the flu. She defined " direct contact " as not

just family members, but anyone at school, church, etc. She said it would be

fine if he had to take it several times.

Hope you're feeling better soon.

>

> Hi all,

>

> I have some questions about Tamiflu. Yesterday I came down with some pretty

good signs of the flu. I called our immuno's office and explained what I was

going thru and they said.. yep sounds like the flu. I asked if I should go and

get tested and they said no, they weren't testing for it anymore. They called

in an rx for Nick for Tamiflu.

>

>

[Guest guest]

Amy,

We have had to give our son (a ten-year old with hypogammaglobulinemia) Tamiflu

when another family member contracted the flu. Although he had some minor side

effects associated with the Tamiflu (mainly stomach pains), it did prevent him

from getting the flu.

This year the immunologist is recommending that we give him Tamiflu after

" direct contact " with anyone with the flu. She defined " direct contact " as not

just family members, but anyone at school, church, etc. She said it would be

fine if he had to take it several times.

Hope you're feeling better soon.

>

> Hi all,

>

> I have some questions about Tamiflu. Yesterday I came down with some pretty

good signs of the flu. I called our immuno's office and explained what I was

going thru and they said.. yep sounds like the flu. I asked if I should go and

get tested and they said no, they weren't testing for it anymore. They called

in an rx for Nick for Tamiflu.

>

>

[Guest guest]

When was positive for Type A flu Macey was put on a 10 day course of

Tamiflu. Yes if she were to get it she would do another course.

Ursula Holleman

mom to (16) and Macey (14)

www.caringbridge.org/visit/maceyholleman

From: mom2lilnick@...

Date: Sun, 13 Sep 2009 18:56:21 -0500

Subject: Tamiflu

Hi all,

I have some questions about Tamiflu. Yesterday I came down with some pretty good

signs of the flu. I called our immuno's office and explained what I was going

thru and they said.. yep sounds like the flu. I asked if I should go and get

tested and they said no, they weren't testing for it anymore. They called in an

rx for Nick for Tamiflu.

So he is supposed to take it for 10 days. Has anyone else's kids taken it when

someone else in the house was sick but not them? I feel really weird giving him

this med when he isn't sick.

Also, what if I give him Tamiflu and 2 weeks later he still gets the flu? Will

he have to do the Tamiflu again? I work at his school and there have been a ton

of kids out with suspected H1N1, so I know where I got it from and I know it is

still going to be going around school for awhile.

Also what side effects should I look for in giving this to him with no flu

symptoms?

Amy,

mom to Nick 6 CVID.

[Guest guest]

I am planning on having my PID daughter get the H1N1 vaccine.  Her immuno dr.

recommended it.  I also thought about having all of us get it (mom, dad, and

sister).We will all also get the regular seasonal flu vaccine.  I am not

thrilled with this at all!  It's like " which scenario worries me less?  Flu or

vaccine? "   I, too, would like others opinion on this.  Also, if we know that my

daughter does not respond to the pneumococcal vaccine, how do we know that she

will respond to the flu vaccines?  Is she really getting any protection?

Stacey

mom to Grace age 10 CVID and Olivia age 5

________________________________

From: Derrick and <derrickandchristine@...>

Sent: Monday, September 14, 2009 12:44:41 AM

Subject: Re: Tamiflu

 

What you describe is not unusual for our household. If one of us gets sick,

starts antibiotics or Tamiflu, depending on our symptoms. Mine and my

husbands primary knows our circumstances, and hands us a script for

whenever she prescribes antibiotics for us. Same goes for the peds doctor w/

his brother. If his brother is sick, the peds also writes a script for

. As a note, our primary and the peds doc all communicate with the

immunologist regularly so writing a script is not arbitrary.

We now have a stock pile of Tamiflu and Zpac's to give as necessary. We just

call the immunologist to let him know is taking it, and why.

If there is someone who has been obviously sick at school, we will also

start him on meds. It is a small school, so illness is easy to see.

I also dislike him being on meds for someone else being sick, but it works,

keeps him healthy, so what is the alternative?

There have been times when he has done Tamiflu for up to 30 days (last

winter) he was sick first, then me, then his brother. Dose 2 and 3 (days

11-30) kept him from getting it again.

BTW, does anyone have thoughts about the H1N1 Vaccine? Will you be giving it

to your kids with PID? Without PID?

On Sun, Sep 13, 2009 at 4:56 PM, Amy <mom2lilnick@ windstream. net> wrote:

>

>

> Hi all,

>

> I have some questions about Tamiflu. Yesterday I came down with some pretty

> good signs of the flu. I called our immuno's office and explained what I was

> going thru and they said.. yep sounds like the flu. I asked if I should go

> and get tested and they said no, they weren't testing for it anymore. They

> called in an rx for Nick for Tamiflu.

>

> So he is supposed to take it for 10 days. Has anyone else's kids taken it

> when someone else in the house was sick but not them? I feel really weird

> giving him this med when he isn't sick.

>

> Also, what if I give him Tamiflu and 2 weeks later he still gets the flu?

> Will he have to do the Tamiflu again? I work at his school and there have

> been a ton of kids out with suspected H1N1, so I know where I got it from

> and I know it is still going to be going around school for awhile.

>

> Also what side effects should I look for in giving this to him with no flu

> symptoms?

>

> Amy,

> mom to Nick 6 CVID.

>

>

[Guest guest]

Hi all!

I don't reply very often. I just usually sit back and quietly learn

from all of your experiences. I cant tell you all how much my husband

and I have learned from all of you. Maybe now is a time that we can

give a bit of info back that may help you with the decision that we

all have to make regarding the new vaccine.

We are not by any means anti vaccine. Though we have had a very

unfortunate experience with our PID boys and a paticular vaccine that

was given to them at 2 months of age. We are therefor very cautious

about giving them any vaccines at this point. Our Daughters have both

been fully vaccinated with no known complications and are not PID. Our

boys are not on IVIG at this point in time though they are being

carefully monitored, and are still having testing done to try and

determine a more specific Dx for their immune problems.

We have been so concerned about the H1N1 flu this year. When our

daughters had to return to school we had a meeting with their doctor

to cone up wiht a game plan for this cold season. I had expected him

to tell us that our best option was to get them vaccinated for both

strains of the flu, as he has always promoted the safety and necessity

of vaccinating all children. Though he has respected our decisions to

delay the rest of the boys vaccines until we have more answers, he has

made it very clear that he does not share our same fears and that the

vaccines would be safe for the boys given the testing that has been

completed.

We were shocked when he told us that not only should we not feel

pressured to vaccinate the boys with the new vaccine, he is not going

to recommend the vaccine to anyone in his practice. He stated that IF

he was sent a shipment, AND a parent absolutely insisted that their

child get it, He would administer the vaccine. Otherwise he felt that

the vacine had been rushed to market to quickly and it left too many

opportunities for mistakes. Then we add the question that the boys may

not even respond to the vaccine. Is that worth the risk??? I had to

pick my jaw up off the floor upon hearing him say this! This was a

complete 180 from the DR we have worked with for over 8 years (all

four of my kids have been with him since birth). He did however

recommend having the rest of the family vaccinated with the seasonal

flu. Apparently the seasonal flu us resistant to Tamiflu and the H1N1

is not. He explained the importance by telling us that as the season

changes and the weather gets colder that we will see more seasonal flu

outbreaks, and that they both test positive for influenza-A. So unless

the CDC runs the test (which they have now said that they will not do

unless you have been admitted to the ICU) The best we can get is if it

is the A type. That leaves the question of how to treat the flu. Which

treatment do you give? If we have ben vaccinated with the seasonal flu

shot we can safely assume( though nothing is perfect) that any flu

that we may test positive for is the H1N1 and not the seasonal

variety. We then would treat with Tamiflu as we have eliminated as

best we can a huge ??? . Since the boys are home with us during the

day, he said that the most likely was for them to get the flu is if

one of us were to get it and bring it home. With the question of the

boys even creating antibodies to ay vaccine still unanswered, he

suggested that the rest of us and our close family members be sure to

get the seasonal shot. That also drops their risk of contracting the

seasonal flu. After our experience with the boys and the reaction to

the vaccines they were given, it has been nothing short of tortorous

having to make this decision. We have decided that for the sake of the

boys we will get the seasonal vaccine. He did say that his opinion may

change as we get a bit further into the outbreak and more of a picture

of what this new flu is going to do starts to materalize. For now we

are playing the wait and see game. We have already had to take our

daughters our of school for 10 days as H1N1 took out the entire middle

school at the school our girls attend. WE were fortunate in that the

school was wonderful by sending all the missed work to us, and we

never got sick. For now we will continue to do this crazy dance. For

now it seems to be our best option. I was more than surprised by his

suggestions, but it made since to me. I hope this helps someone.

mom to four

(8) (6) Jack and Tristan (2.5 CVID)

On Sep 14, 2009, at 9:48 PM, Stacey Enlow wrote:

> I am planning on having my PID daughter get the H1N1 vaccine. Her

> immuno dr. recommended it. I also thought about having all of us

> get it (mom, dad, and sister).We will all also get the regular

> seasonal flu vaccine. I am not thrilled with this at all! It's

> like " which scenario worries me less? Flu or vaccine? " I, too,

> would like others opinion on this. Also, if we know that my

> daughter does not respond to the pneumococcal vaccine, how do we

> know that she will respond to the flu vaccines? Is she really

> getting any protection?

>

> Stacey

> mom to Grace age 10 CVID and Olivia age 5

>

> ________________________________

> From: Derrick and <derrickandchristine@...>

>

> Sent: Monday, September 14, 2009 12:44:41 AM

> Subject: Re: Tamiflu

>

>

> What you describe is not unusual for our household. If one of us

> gets sick,

> starts antibiotics or Tamiflu, depending on our symptoms.

> Mine and my

> husbands primary knows our circumstances, and hands us a script for

>

> whenever she prescribes antibiotics for us. Same goes for the peds

> doctor w/

> his brother. If his brother is sick, the peds also writes a script for

> . As a note, our primary and the peds doc all communicate with

> the

> immunologist regularly so writing a script is not arbitrary.

> We now have a stock pile of Tamiflu and Zpac's to give as necessary.

> We just

> call the immunologist to let him know is taking it, and why.

>

> If there is someone who has been obviously sick at school, we will

> also

> start him on meds. It is a small school, so illness is easy to see.

>

> I also dislike him being on meds for someone else being sick, but it

> works,

> keeps him healthy, so what is the alternative?

>

> There have been times when he has done Tamiflu for up to 30 days (last

> winter) he was sick first, then me, then his brother. Dose 2 and 3

> (days

> 11-30) kept him from getting it again.

>

> BTW, does anyone have thoughts about the H1N1 Vaccine? Will you be

> giving it

> to your kids with PID? Without PID?

>

>

> On Sun, Sep 13, 2009 at 4:56 PM, Amy <mom2lilnick@ windstream. net>

> wrote:

>

> >

> >

> > Hi all,

> >

> > I have some questions about Tamiflu. Yesterday I came down with

> some pretty

> > good signs of the flu. I called our immuno's office and explained

> what I was

> > going thru and they said.. yep sounds like the flu. I asked if I

> should go

> > and get tested and they said no, they weren't testing for it

> anymore. They

> > called in an rx for Nick for Tamiflu.

> >

> > So he is supposed to take it for 10 days. Has anyone else's kids

> taken it

> > when someone else in the house was sick but not them? I feel

> really weird

> > giving him this med when he isn't sick.

> >

> > Also, what if I give him Tamiflu and 2 weeks later he still gets

> the flu?

> > Will he have to do the Tamiflu again? I work at his school and

> there have

> > been a ton of kids out with suspected H1N1, so I know where I got

> it from

> > and I know it is still going to be going around school for awhile.

> >

> > Also what side effects should I look for in giving this to him

> with no flu

> > symptoms?

> >

> > Amy,

> > mom to Nick 6 CVID.

> >

> >

[Guest guest]

,

I was told the same thing by both Ped and Immuno.

From: tinuviel44@...

Date: Mon, 14 Sep 2009 22:49:22 -0400

Subject: Re: Tamiflu

Hi all!

I don't reply very often. I just usually sit back and quietly learn

from all of your experiences. I cant tell you all how much my husband

and I have learned from all of you. Maybe now is a time that we can

give a bit of info back that may help you with the decision that we

all have to make regarding the new vaccine.

We are not by any means anti vaccine. Though we have had a very

unfortunate experience with our PID boys and a paticular vaccine that

was given to them at 2 months of age. We are therefor very cautious

about giving them any vaccines at this point. Our Daughters have both

been fully vaccinated with no known complications and are not PID. Our

boys are not on IVIG at this point in time though they are being

carefully monitored, and are still having testing done to try and

determine a more specific Dx for their immune problems.

We have been so concerned about the H1N1 flu this year. When our

daughters had to return to school we had a meeting with their doctor

to cone up wiht a game plan for this cold season. I had expected him

to tell us that our best option was to get them vaccinated for both

strains of the flu, as he has always promoted the safety and necessity

of vaccinating all children. Though he has respected our decisions to

delay the rest of the boys vaccines until we have more answers, he has

made it very clear that he does not share our same fears and that the

vaccines would be safe for the boys given the testing that has been

completed.

We were shocked when he told us that not only should we not feel

pressured to vaccinate the boys with the new vaccine, he is not going

to recommend the vaccine to anyone in his practice. He stated that IF

he was sent a shipment, AND a parent absolutely insisted that their

child get it, He would administer the vaccine. Otherwise he felt that

the vacine had been rushed to market to quickly and it left too many

opportunities for mistakes. Then we add the question that the boys may

not even respond to the vaccine. Is that worth the risk??? I had to

pick my jaw up off the floor upon hearing him say this! This was a

complete 180 from the DR we have worked with for over 8 years (all

four of my kids have been with him since birth). He did however

recommend having the rest of the family vaccinated with the seasonal

flu. Apparently the seasonal flu us resistant to Tamiflu and the H1N1

is not. He explained the importance by telling us that as the season

changes and the weather gets colder that we will see more seasonal flu

outbreaks, and that they both test positive for influenza-A. So unless

the CDC runs the test (which they have now said that they will not do

unless you have been admitted to the ICU) The best we can get is if it

is the A type. That leaves the question of how to treat the flu. Which

treatment do you give? If we have ben vaccinated with the seasonal flu

shot we can safely assume( though nothing is perfect) that any flu

that we may test positive for is the H1N1 and not the seasonal

variety. We then would treat with Tamiflu as we have eliminated as

best we can a huge ??? . Since the boys are home with us during the

day, he said that the most likely was for them to get the flu is if

one of us were to get it and bring it home. With the question of the

boys even creating antibodies to ay vaccine still unanswered, he

suggested that the rest of us and our close family members be sure to

get the seasonal shot. That also drops their risk of contracting the

seasonal flu. After our experience with the boys and the reaction to

the vaccines they were given, it has been nothing short of tortorous

having to make this decision. We have decided that for the sake of the

boys we will get the seasonal vaccine. He did say that his opinion may

change as we get a bit further into the outbreak and more of a picture

of what this new flu is going to do starts to materalize. For now we

are playing the wait and see game. We have already had to take our

daughters our of school for 10 days as H1N1 took out the entire middle

school at the school our girls attend. WE were fortunate in that the

school was wonderful by sending all the missed work to us, and we

never got sick. For now we will continue to do this crazy dance. For

now it seems to be our best option. I was more than surprised by his

suggestions, but it made since to me. I hope this helps someone.

mom to four

(8) (6) Jack and Tristan (2.5 CVID)

On Sep 14, 2009, at 9:48 PM, Stacey Enlow wrote:

> I am planning on having my PID daughter get the H1N1 vaccine. Her

> immuno dr. recommended it. I also thought about having all of us

> get it (mom, dad, and sister).We will all also get the regular

> seasonal flu vaccine. I am not thrilled with this at all! It's

> like " which scenario worries me less? Flu or vaccine? " I, too,

> would like others opinion on this. Also, if we know that my

> daughter does not respond to the pneumococcal vaccine, how do we

> know that she will respond to the flu vaccines? Is she really

> getting any protection?

>

> Stacey

> mom to Grace age 10 CVID and Olivia age 5

>

> ________________________________

> From: Derrick and <derrickandchristine@...>

>

> Sent: Monday, September 14, 2009 12:44:41 AM

> Subject: Re: Tamiflu

>

>

> What you describe is not unusual for our household. If one of us

> gets sick,

> starts antibiotics or Tamiflu, depending on our symptoms.

> Mine and my

> husbands primary knows our circumstances, and hands us a script for

>

> whenever she prescribes antibiotics for us. Same goes for the peds

> doctor w/

> his brother. If his brother is sick, the peds also writes a script for

> . As a note, our primary and the peds doc all communicate with

> the

> immunologist regularly so writing a script is not arbitrary.

> We now have a stock pile of Tamiflu and Zpac's to give as necessary.

> We just

> call the immunologist to let him know is taking it, and why.

>

> If there is someone who has been obviously sick at school, we will

> also

> start him on meds. It is a small school, so illness is easy to see.

>

> I also dislike him being on meds for someone else being sick, but it

> works,

> keeps him healthy, so what is the alternative?

>

> There have been times when he has done Tamiflu for up to 30 days (last

> winter) he was sick first, then me, then his brother. Dose 2 and 3

> (days

> 11-30) kept him from getting it again.

>

> BTW, does anyone have thoughts about the H1N1 Vaccine? Will you be

> giving it

> to your kids with PID? Without PID?

>

>

> On Sun, Sep 13, 2009 at 4:56 PM, Amy <mom2lilnick@ windstream. net>

> wrote:

>

> >

> >

> > Hi all,

> >

> > I have some questions about Tamiflu. Yesterday I came down with

> some pretty

> > good signs of the flu. I called our immuno's office and explained

> what I was

> > going thru and they said.. yep sounds like the flu. I asked if I

> should go

> > and get tested and they said no, they weren't testing for it

> anymore. They

> > called in an rx for Nick for Tamiflu.

> >

> > So he is supposed to take it for 10 days. Has anyone else's kids

> taken it

> > when someone else in the house was sick but not them? I feel

> really weird

> > giving him this med when he isn't sick.

> >

> > Also, what if I give him Tamiflu and 2 weeks later he still gets

> the flu?

> > Will he have to do the Tamiflu again? I work at his school and

> there have

> > been a ton of kids out with suspected H1N1, so I know where I got

> it from

> > and I know it is still going to be going around school for awhile.

> >

> > Also what side effects should I look for in giving this to him

> with no flu

> > symptoms?

> >

> > Amy,

> > mom to Nick 6 CVID.

> >

> >

[Guest guest]

Generally the answer is, we don't know if it will help or not, but the risk from

flu out weights the very slight risk from the vaccine.

We're vaccination everyone in the family

>

> I am planning on having my PID daughter get the H1N1 vaccine.  Her immuno dr.

recommended it.  I also thought about having all of us get it (mom, dad, and

sister).We will all also get the regular seasonal flu vaccine.  I am not

thrilled with this at all!  It's like " which scenario worries me less?  Flu or

vaccine? "   I, too, would like others opinion on this.  Also, if we know that my

daughter does not respond to the pneumococcal vaccine, how do we know that she

will respond to the flu vaccines?  Is she really getting any protection?

>

> Stacey

> mom to Grace age 10 CVID and Olivia age 5

[Guest guest]

In general flu's are viral and are handled by the T cell part of the immune

system( rather than the B cell ) My son has some minor T cell issues but seems

to get immunity from the flu vaccine each year. He is 13 and has CVID. When we

did not give him the vaccine in the past he got it EVERY YEAR! It is a tough

choice to make if you have allergies to the vaccines in your family. I would

encourage you to look for single dose vaccines because they do not put the

Mercury in them. The Mercury is used in the multi dose vials to preserve them to

be used multiple times after being opened. You will need to probably pay more to

get the single dose but for me it is worth it.

BARBIE  

From: markleventhal <lev@...>

Subject: Re: Tamiflu

Date: Monday, September 21, 2009, 8:02 AM

 

Generally the answer is, we don't know if it will help or not,

but the risk from flu out weights the very slight risk from the vaccine.

We're vaccination everyone in the family

>

> I am planning on having my PID daughter get the H1N1 vaccine.  Her immuno dr.

recommended it.  I also thought about having all of us get it (mom, dad, and

sister).We will all also get the regular seasonal flu vaccine.  I am not

thrilled with this at all!  It's like " which scenario worries me less?  Flu or

vaccine? "   I, too, would like others opinion on this.  Also, if we know that my

daughter does not respond to the pneumococcal vaccine, how do we know that she

will respond to the flu vaccines?  Is she really getting any protection?

>

> Stacey

> mom to Grace age 10 CVID and Olivia age 5

[Guest guest]

---

I just asked our ID dr this same question. If the kids dont respond well to the

pnuemovax, how do we know if the flu shot is working either? He said that its

not that my kids dont respond at all to the pneumovax or some of the other

vaccines, its that they dont respond as well, or as robustly as most other

people. Most people would respond to most or all of the 23 serotypes in the

pnuemovax, my kids responded to 7 or less, and that response was weaker than

normal. So, they do respond to some of it and what they do respond to is a

little bit more protection than none at all. Also, many of our kids do respond

initially, and then lose that response, so if they respond initially to the flu

shot and it only lasts them a couple of months thru the dead of winter, and then

they lose it, they still had some protection from that time.

One of my four kids reacts something terrible to vaccinations. At first we

thought it was egg but now that doesnt seem to be the case. So she cannot have

any vaccinations at all. Unfortunately, she is also the one of mine whose lung

function tanks with any URI and as she is my only one who cannot have the flu

shot, every yr, she ends up with the flu, and stays sick for a month or more.

Her drs are very concerned about her getting the H1N1 virus. So, everyone in our

house will need to get both the flu shot and the H1N1 shot in order to try to

protect her.

valarie

mom to 3 w/cvid

In , " markleventhal " <lev@...> wrote:

>

> Generally the answer is, we don't know if it will help or not, but the risk

from flu out weights the very slight risk from the vaccine.

>

> We're vaccination everyone in the family

>

>

>

> >

> > I am planning on having my PID daughter get the H1N1 vaccine.  Her immuno

dr. recommended it.  I also thought about having all of us get it (mom, dad, and

sister).We will all also get the regular seasonal flu vaccine.  I am not

thrilled with this at all!  It's like " which scenario worries me less?  Flu or

vaccine? "   I, too, would like others opinion on this.  Also, if we know that my

daughter does not respond to the pneumococcal vaccine, how do we know that she

will respond to the flu vaccines?  Is she really getting any protection?

> >

> > Stacey

> > mom to Grace age 10 CVID and Olivia age 5

>

[Guest guest]

I just sent info yesterday

Hopefully more of you will go off digest and onto emails or check at

webpage while we are in this intense time.

I will send again

Never in a million years would I take tamiflu while pregant

Sheri

At 06:22 PM 11/11/2009, you wrote:

>Hello:

>

>My sister was just given Tamiflu from her doctor because she's

>pregnant and her son has the flu.

>I thought there was a country that banned it or it could have been

>another form of " flu prevention " .

>Does anyone have current information on Tamiflu? I've found info

>from 2008 and 2005.

>

>Thank you

>

>Amy P

>

>

>

>------------------------------------

>

>

[Guest guest]

so much danger for Tamiflu for children

I will send again.

I would not have them in your house, just because they are sick

They should keep him home

Will send info

Sheri

At 12:20 PM 11/18/2009, you wrote:

>I'm sorry if this sounds like a stupid question, I just don't even

>have a spare minute today to do any of my own searching! I babysit

>for a family on Thursdays and the mom emailed me yesterday to say

>she wasn't sure if they'd be coming tomorrow because the baby (8

>months) may either have croup or the flu (symptoms, etc...I don't

>know ANYTHING, that's all she said). She said both kids (other one

>is 3) were started on Tamiflu (argghhhh) so she'd see how they were

>today to let me know whether they are coming tomorrow. I have a 16

>month old that I don't want to get sick so my question is

>basically...if they give him the Tamiflu and he seems 'better'

>tomorrow is he really still sick and contagious with 'whatever' he

>has? I just want to be able to 'head her off at the pass' if

>necessary and say 'hey even if he's 'better' I've heard he's still

>contagious so keep him home' or whatever...

>Advice, info, references?

>Thanks!

>

>

>

>

>

>------------------------------------

>

>

[Guest guest]

At 12:20 PM 11/18/2009, you wrote:

>I'm sorry if this sounds like a stupid question, I just don't even

>have a spare minute today to do any of my own searching! I babysit

>for a family on Thursdays and the mom emailed me yesterday to say

>she wasn't sure if they'd be coming tomorrow because the baby (8

>months) may either have croup or the flu (symptoms, etc...I don't

>know ANYTHING, that's all she said). She said both kids (other one

>is 3) were started on Tamiflu (argghhhh) so she'd see how they were

>today to let me know whether they are coming tomorrow. I have a 16

>month old that I don't want to get sick so my question is

>basically...if they give him the Tamiflu and he seems 'better'

>tomorrow is he really still sick and contagious with 'whatever' he

>has? I just want to be able to 'head her off at the pass' if

>necessary and say 'hey even if he's 'better' I've heard he's still

>contagious so keep him home' or whatever...

>Advice, info, references?

Can't really give you references whether they are still sick tomorrow.

But if they sound and act sick, they are sick

Sheri

>Thanks!

>

>

>

>

>

>------------------------------------

>

>

[Guest guest]

I emailed her and told her I did some reading and found that the Tamiflu can

basically mask symptoms while they're still contagious and I didn't want to risk

that and she said she agreed.

And while I agree that contracting some illnesses wouldn't necessarily be a bad

thing, I think she's still a little young to do it 'on purpose.' Plus I figure

she is getting enough exposure from the people we just happen to be around in

public without necessarily having her chewing on the same toys as a sick baby.

Thanks!

> >

> > I'm sorry if this sounds like a stupid question, I just don't even have a

spare minute today to do any of my own searching! I babysit for a family on

Thursdays and the mom emailed me yesterday to say she wasn't sure if they'd be

coming tomorrow because the baby (8 months) may either have croup or the flu

(symptoms, etc...I don't know ANYTHING, that's all she said). She said both

kids (other one is 3) were started on Tamiflu (argghhhh) so she'd see how they

were today to let me know whether they are coming tomorrow. I have a 16 month

old that I don't want to get sick so my question is basically...if they give him

the Tamiflu and he seems 'better' tomorrow is he really still sick and

contagious with 'whatever' he has? I just want to be able to 'head her off at

the pass' if necessary and say 'hey even if he's 'better' I've heard he's still

contagious so keep him home' or whatever...

> > Advice, info, references?

> > Thanks!

> >

> >

>

[Guest guest]

le, I tried one dose when I thought I might have H1N1. It turned out to be

my babesia resurfacing. I did not have any serious side effects it just did not

feel that good to take it. If I have BB lyme it is very dormant. If you choose

not to take that, if you get the flu lomatium is recommended. I got the H1N1

shot 5 days ago because with my health I did not think I could beat the actual

flu. I am doing fine and trying to stay low for 10 days until it is fully

protective. Doug

From: le Handy <kndplus2@...>

Subject: [ ] Tamiflu

Date: Tuesday, December 22, 2009, 7:31 PM

 

Has anybody with Lyme used the Tamiflu? If so, did you have any bad

reactions? or did it help?

[Guest guest]

It's been a long time since I posted. We were looking into going to NNY with my

son who has Autism. It all got put on hold because my son was diagnosed with

Mastocytosis after a wonderful person on this thread shared her information

about Masto with me. He might have very well died this last summer because of

the heat and humidity but because we knew what was going on we were medically

prepared. However adjusting to the medications for this and such pushed off us

pursuing other treatment with nny autism center. Now onto the real question,

recently we got a horrid case of the flu, no we didn't get our shots 0.0 lol So

we both had to go on Tamiflu. I saw VAST cognitive improvements in him. Please

share with me if this drug has any link to Acyclovir or anything pertinent. Yea

the mom who is always looking for proof is still inside me even though I think

my gut knows the answers. Thanks much! jess

[Guest guest]

I can't answer about tamiflu, but I wonder if it has any similar effects as

amantadine, another antiviral for flu that doesn't cover the new flu but has

made a big difference in my cognitive function.  It's not part of the

protocol though.

________________________________

From: sablepawz <sablepawz@...>

Sent: Tue, February 1, 2011 5:23:28 PM

Subject: Tamiflu

 

It's been a long time since I posted. We were looking into going to NNY with my

son who has Autism. It all got put on hold because my son was diagnosed with

Mastocytosis after a wonderful person on this thread shared her information

about Masto with me. He might have very well died this last summer because of

the heat and humidity but because we knew what was going on we were medically

prepared. However adjusting to the medications for this and such pushed off us

pursuing other treatment with nny autism center. Now onto the real question,

recently we got a horrid case of the flu, no we didn't get our shots 0.0 lol So

we both had to go on Tamiflu. I saw VAST cognitive improvements in him. Please

share with me if this drug has any link to Acyclovir or anything pertinent. Yea

the mom who is always looking for proof is still inside me even though I think

my gut knows the answers. Thanks much! jess