Questions

[Guest guest]

thank you!

[Guest guest]

2400mg total sodium per day was the mean or average in the trials. I

had to look at all labels of commercial foods, and look up all other

foods, drinks, supplements - anything that went into my mouth in a 24hr

period - in " nutrition contents " catalogs or websites. Once I knew the

sodium content of everything, I could add up a day's worth of eating to

1400mg (where I started). After some testing with my

aldosterone-blocker, aldactone (spironolactone), 2400mg worked best

because that and only 37mg of aldactone kept my pressure stable at

120/70. Other combinations made the BP jump around too much.

It will be different for each person, I surmise.

Of course no table salt. The salt substitute (potassium) was OK, but I

liked lmon juice and Mrs Dash seasonings better. The thing I noticed is

that my terror of giving up the taste of salt was unfounded. In 2-3 days

I lved the new tastes, and old foods (like junk food hamburgers) tasted

like a salt-lick. Yuck! Amazing how fast my taste buds adapted.

That rear neck-headache is just at the occipitus? My BP headaches were

always at the temples and general. When I got the occipital pain it was

associated with drug interaction or 'side effects.' Stress never did

it. But that's only one person.

Dave

Ellen wrote:

>

> I looked at the file. I found it hard to read, the type was too big and it

> resisted printing out. Anyway, how much salt (sodium???) should a 63

> yr. old

> woman who weighs 148 lbs. take in daily? I didn't see the amount.

> Sodium isn't

> all salt, right? Does it mean if I stick to this diet that I need to

> eliminate

> all pre-prepared foods in order to curb the sodium? I desperately want

> to lower

> my b.p. only from diet and lifestyle. Another question: I didn't get a

> reading

> of my b.p. today (I'm scared) but I ASSUME it was up because I have

> this pain in

> the back of my skull like a sex headache, only it is persistent. And if I

> massage my head in back, it hurts (on the surface). I've had it

> before..............when my husband upsets me, I can feel it ramp up

> (blowing my

> top?). My husband's mentally ill and he upsets me daily..

> Thanks,

> Ellen

> hyperaldosteronism

> <mailto:hyperaldosteronism%40> wrote:

>

> > Hello,

> >

> > This email message is a notification to let you know that

> > a file has been uploaded to the Files area of the hyperaldosteronism

> > group.

> >

> > File : /DASH and TONE.ppt

> > Uploaded by : jwwright2 <jwwright@...

> <mailto:jwwright%40eastex.net>>

> > Description : DASH and TONE.ppt (2/09/07)

>

>

>

[Guest guest]

ELLEN YOU NEED TO GET THE DASH DIET BOOK AND READ IT. IT IS ONLY $7

FOR CHRIST'S SAKE. THIS will answer many of your questons and give you

a full grasp or the role of diet in BP control Our group here is

unique is showing the role of the DASH in BP control in PA.

On Feb 29, 2008, at 7:30 PM, Dave wrote:

> 2400mg total sodium per day was the mean or average in the trials. I

> had to look at all labels of commercial foods, and look up all other

> foods, drinks, supplements - anything that went into my mouth in a

> 24hr

> period - in " nutrition contents " catalogs or websites. Once I knew the

> sodium content of everything, I could add up a day's worth of eating

> to

> 1400mg (where I started). After some testing with my

> aldosterone-blocker, aldactone (spironolactone), 2400mg worked best

> because that and only 37mg of aldactone kept my pressure stable at

> 120/70. Other combinations made the BP jump around too much.

>

> It will be different for each person, I surmise.

>

> Of course no table salt. The salt substitute (potassium) was OK, but I

> liked lmon juice and Mrs Dash seasonings better. The thing I noticed

> is

> that my terror of giving up the taste of salt was unfounded. In 2-3

> days

> I lved the new tastes, and old foods (like junk food hamburgers)

> tasted

> like a salt-lick. Yuck! Amazing how fast my taste buds adapted.

>

> That rear neck-headache is just at the occipitus? My BP headaches were

> always at the temples and general. When I got the occipital pain it

> was

> associated with drug interaction or 'side effects.' Stress never did

> it. But that's only one person.

>

> Dave

>

> Ellen wrote:

> >

> > I looked at the file. I found it hard to read, the type was too big

> and it

> > resisted printing out. Anyway, how much salt (sodium???) should a 63

> > yr. old

> > woman who weighs 148 lbs. take in daily? I didn't see the amount.

> > Sodium isn't

> > all salt, right? Does it mean if I stick to this diet that I need to

> > eliminate

> > all pre-prepared foods in order to curb the sodium? I desperately

> want

> > to lower

> > my b.p. only from diet and lifestyle. Another question: I didn't

> get a

> > reading

> > of my b.p. today (I'm scared) but I ASSUME it was up because I have

> > this pain in

> > the back of my skull like a sex headache, only it is persistent.

> And if I

> > massage my head in back, it hurts (on the surface). I've had it

> > before..............when my husband upsets me, I can feel it ramp up

> > (blowing my

> > top?). My husband's mentally ill and he upsets me daily..

> > Thanks,

> > Ellen

> > hyperaldosteronism

> > <mailto:hyperaldosteronism%40> wrote:

> >

> > > Hello,

> > >

> > > This email message is a notification to let you know that

> > > a file has been uploaded to the Files area of the

> hyperaldosteronism

> > > group.

> > >

> > > File : /DASH and TONE.ppt

> > > Uploaded by : jwwright2 <jwwright@...

> > <mailto:jwwright%40eastex.net>>

> > > Description : DASH and TONE.ppt (2/09/07)

> >

> >

> >

>

>

[Guest guest]

You want to eat only enough salt that gets your BP to goal. The DASH

book is needed in your case.

Do the 14 day trial and then add SODIUM until your BP rises to your

goal.

Keep us posted on your results.

On Feb 29, 2008, at 7:15 PM, Ellen wrote:

> I looked at the file. I found it hard to read, the type was too big

> and it

> resisted printing out. Anyway, how much salt (sodium???) should a 63

> yr. old

> woman who weighs 148 lbs. take in daily?

CE Grim BS, MS, MD

High Blood Pressure Consulting

Specializing in Difficult to Manage High Blood Pressure

Consult the following at for details

bloodpressureline

hyperaldosteronism

[Guest guest]

Thanks, Dave. Interesting.

Ellen

Dave wrote:

> 2400mg total sodium per day was the mean or average in the trials. I

> had to look at all labels of commercial foods, and look up all other

> foods, drinks, supplements - anything that went into my mouth in a 24hr

> period - in " nutrition contents " catalogs or websites. Once I knew the

> sodium content of everything, I could add up a day's worth of eating to

> 1400mg (where I started). After some testing with my

> aldosterone-blocker, aldactone (spironolactone), 2400mg worked best

> because that and only 37mg of aldactone kept my pressure stable at

> 120/70. Other combinations made the BP jump around too much.

>

> It will be different for each person, I surmise.

>

> Of course no table salt. The salt substitute (potassium) was OK, but I

> liked lmon juice and Mrs Dash seasonings better. The thing I noticed is

> that my terror of giving up the taste of salt was unfounded. In 2-3 days

> I lved the new tastes, and old foods (like junk food hamburgers) tasted

> like a salt-lick. Yuck! Amazing how fast my taste buds adapted.

>

> That rear neck-headache is just at the occipitus? My BP headaches were

> always at the temples and general. When I got the occipital pain it was

> associated with drug interaction or 'side effects.' Stress never did

> it. But that's only one person.

>

[Guest guest]

OK, I will. But where is it???? The book, and the trial protocol, I mean.

Thanks,

Ellen

Clarence Grim wrote:

> You want to eat only enough salt that gets your BP to goal. The DASH

> book is needed in your case.

>

> Do the 14 day trial and then add SODIUM until your BP rises to your

> goal.

>

> Keep us posted on your results.

[Guest guest]

Fine, I will, tell me where to get it, but please don't take the Lord's name

in vain.

Ellen

Clarence Grim wrote:

> ELLEN YOU NEED TO GET THE DASH DIET BOOK AND READ IT. IT IS ONLY $7

> FOR CHRIST'S SAKE. THIS will answer many of your questons and give you

> a full grasp or the role of diet in BP control Our group here is

> unique is showing the role of the DASH in BP control in PA.

[Guest guest]

By occipitus I assume you mean the base of the skull where the head meets the

neck. No, actually, mine is a bit higher, it's really a few inches above the

base, but near it. What else do you know about the location?

Thanks,

Ellen

Dave wrote:

> That rear neck-headache is just at the occipitus? My BP headaches were

> always at the temples and general. When I got the occipital pain it was

> associated with drug interaction or 'side effects.' Stress never did

> it. But that's only one person.

>

[Guest guest]

Here ya' go Ellen. This was found with a search on Amazon.com.

http://tinyurl.com/yodawn

..

The Dash Diet for Hypertension: Lower Your Blood Pressure in 14

Days--Without Drugs by J. M.D., , Njeri Karanja,

and P. Svetkey (Hardcover - Oct 9, 2001) - Bargain Price

11 Used & new from $34.09

The DASH Diet for Hypertension by and Mark (Mass Market

Paperback - Mar 1, 2003)

Buy new: $7.99 49 Used & new from $2.98

Get it by Monday, Mar 3 if you order in the next 5 hours and choose one-day

shipping.

Eligible for FREE Super Saver Shipping.

4.6 out of 5 stars (14)

Other Editions: Hardcover

While you're at Amazon, do a search on monitors and get one.

http://tinyurl.com/2g3yd4

Then, go calibrate it with your doctor.

Ellen, your thinking is a little off. First you don't even know if you have

a hypertension problem. If your monitor scares you, you need to get a new

one. You cannot depend on grocery store monitors to be accurate. Even if

you are totally healthy, you ought to be monitoring your own blood pressure,

and you ought to understand about salt. People eat too much salt, in

general.

I assume you've scheduled a re-check of your aldosterone/renin test.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Ellen

Fine, I will, tell me where to get it, but please don't take the Lord's name

in vain.

Ellen

[Guest guest]

Go to any book store and they can order it for you. T DASH diet

for HTN.

Or you can get it on the web.

On Mar 1, 2008, at 7:33 AM, Ellen wrote:

> OK, I will. But where is it???? The book, and the trial protocol, I

> mean.

>

> Thanks,

> Ellen

>

> Clarence Grim wrote:

>

> > You want to eat only enough salt that gets your BP to goal. The DASH

> > book is needed in your case.

> >

> > Do the 14 day trial and then add SODIUM until your BP rises to your

> > goal.

> >

> > Keep us posted on your results.

>

>

CE Grim BS, MS, MD

High Blood Pressure Consulting

Specializing in Difficult to Manage High Blood Pressure

Consult the following at for details

bloodpressureline

hyperaldosteronism

[Guest guest]

We also need to develop a headache data collection method.

Does anyone have one? Must be one on the web somewhere.

On Mar 1, 2008, at 8:52 AM, Ellen wrote:

> By occipitus I assume you mean the base of the skull where the head

> meets the

> neck. No, actually, mine is a bit higher, it's really a few inches

> above the

> base, but near it. What else do you know about the location?

> Thanks,

> Ellen

>

> Dave wrote:

>

> > That rear neck-headache is just at the occipitus? My BP headaches

> were

> > always at the temples and general. When I got the occipital pain it

> was

> > associated with drug interaction or 'side effects.' Stress never did

> > it. But that's only one person.

> >

>

>

CE Grim BS, MS, MD

High Blood Pressure Consulting

Specializing in Difficult to Manage High Blood Pressure

Consult the following at for details

bloodpressureline

hyperaldosteronism

[Guest guest]

This must be the hardback version which is larger print.

On Mar 1, 2008, at 9:12 AM, Valarie wrote:

> Here ya' go Ellen. This was found with a search on Amazon.com.

> http://tinyurl.com/yodawn

>

>

> .

>

>

>

> The Dash Diet for Hypertension: Lower Your Blood Pressure in 14

> Days--Without Drugs by J. M.D., , Njeri

> Karanja,

> and P. Svetkey (Hardcover - Oct 9, 2001) - Bargain Price

>

> 11 Used & new from $34.09

>

>

>

>

>

> The DASH Diet for Hypertension by and Mark (Mass

> Market

> Paperback - Mar 1, 2003)

>

> Buy new: $7.99 49 Used & new from $2.98

>

> Get it by Monday, Mar 3 if you order in the next 5 hours and choose

> one-day

> shipping.

>

> Eligible for FREE Super Saver Shipping.

>

> 4.6 out of 5 stars (14)

>

> Other Editions: Hardcover

>

> While you're at Amazon, do a search on monitors and get one.

> http://tinyurl.com/2g3yd4

> Then, go calibrate it with your doctor.

>

> Ellen, your thinking is a little off. First you don't even know if

> you have

> a hypertension problem. If your monitor scares you, you need to get a

> new

> one. You cannot depend on grocery store monitors to be accurate. Even

> if

> you are totally healthy, you ought to be monitoring your own blood

> pressure,

> and you ought to understand about salt. People eat too much salt, in

> general.

>

> I assume you've scheduled a re-check of your aldosterone/renin test.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Ellen

> Fine, I will, tell me where to get it, but please don't take the

> Lord's name

> in vain.

> Ellen

>

>

[Guest guest]

My son has CVID and asthma also. I wouldn't be very happy about the

whole mask/tubing issue, either!! Mark takes pulmicort 2 x day

(prn) and when he needs it, I give it to him before school and after

supper, that way the school is not involved. Would that be an option

for you to reduce the treatments at school?

I'm not sure from your message, but I would guess that the school

nurse contacted your pediatrician about the hypogam. It might be a

good idea to have her actually contact your immunologist, as some

peds aren't as up-to-date on the ins and outs of PID. There are

things my ped thinks aren't that significant whereas our immunologist

acts on it right away. Just a thought for you.

Mark started Kindergarten this year and it was hard. You want them

to be as " normal " as possible, but we still have to use caution in

situations others wouldn't look twice at. I set up a meeting with

the teacher, school nurse, and principal before school started to

give them background on Mark and the different issues of PID. That

might be an idea too, as so many people look at our kids and think

they " look great " so there's no problem. IDF has a great resource

for school personnel that you can obtain. I got two copies, one for

his teacher and one for the school nurse and highlighted the parts

that pertain to Mark.

Good luck to you. Mark has been on atb's all winter it seems for a

sinus infection that just won't go away. These kids are braver than

a lot of adults I know. Spring is coming!

, mom to Mark, CVID, 6

>

> Hi, it has been awhile since I have written anything. My son was

diagnoised with Hypogammaglobulinemia in August of 2007. He also

started school in August...he has had 13 ear infections, several

sinus infections...he took Cedax and Augmenten ES for all of them.

Three weeks ago he had his second set of ear tubes put in...they

cultured the stuff in his nose and he had staph and pneumonia

bacteria in his nose. So he is on another antibiotic that he takes

twice a day for 21 days.

>

> My real concern is this...at school he takes Pulimocort everyday

and Albuterol as needed. Before Christmas I went to get his machine

(nebulizer) to bring home for the holidays and personally pulled

another students tubing and mask off of his machine. Also, his

medication wasn't locked up. I went back in before he had surgery

and it was still not locked up. Also, the school nurse keeps his

machine set up. I wrote a complaint letter asking that she rinse his

mask daily and put it in a bag. I also asked if she would lock his

medication up.

>

> The district asked me for a release to talk to the doctor...I

signed it...the nurse supposedly called and the doctor told her that

his condition was mild and he should be treated like any other

child. He also said that the mask didn't need to be cleaned daily.

Does this make any sense to anyone????? (now I do want him treated

like everyone else) but they aren't the ones with him when he is

sick.

>

> What should I do? I can't quit work...I work in the district he

attends school. Should I call the doctor myself and explain my

dilema. All I want is common sense hygiene to occur...I hate this

that the condition is 'bad enough "

>

> Any suggestions would be appreciated.

>

> Jodi

>

>

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

> Looking for last minute shopping deals? Find them fast with

Search.

>

>

[Guest guest]

Jodi,

I would be VERY surprised if the doctor said this to the school. I would expect

it came from " staff " and in this day and age it is generally medical assistant (

who know nothing about nothing). The two things I would do is first I would get

a doctors appt and find out what your doctor wants you to do in person. I would

make this your immunologist not Ped. Then I would call the state school Board of

Education and ask them what the protocol is for meds and cleaning medical

equipment ( ask them to mail or fax or email it to you) and then write a letter

to the school district and again request that your sons medications follow

appropriate protocol. They are required by the Dept. of Health to follow

protocol that has to be in writing. Find out what it is and then have the DOH

make them enforce. File a complaint with the DOH and also the DOE. I hope this

helps. You will know what the school is suppose to do and secondly you will not

have to argue with them. I

use to write medical protocols for a private school and we were required by WA

law to have all meds locked up ( filing cabinet) and also we had to clean all

equipment per protocol. You might ask them how often they are cleaning the

equipt and what are they guidelines. Or you could bring them new tubing weekly.

I would say it is not necessary to fully clean it but weekly. But the mask

should be rinsed in hot soapy water daily and then put out to dry and covered

with something. I can see why they are balking at it because it is a lot of work

but it could also be a source for reinfection. NO the number of infections you

are dealing with is not normal and or mild. You may also need some help with a

Pulmonologist or ENT to get the school and your PED to get it. Do you have

titers back on his antibody production? If you not you may need to see a further

work up if you doctor thinks that it is " mild " without documentation. As so

many have said on this list.

It is not the numbers but the function and clinical picture that tell the full

story. I am so sorry you are having to deal with all of this. Also you may want

to go to the IDF site and get info for the school about Immune disorders. I know

we were not fully listened to until we got them this info. And even after that

it was a constant battle for them to " get it " .

BARBIE

questions

Hi, it has been awhile since I have written anything. My son

was diagnoised with Hypogammaglobulinem ia in August of 2007. He also started

school in August...he has had 13 ear infections, several sinus infections.. .he

took Cedax and Augmenten ES for all of them. Three weeks ago he had his second

set of ear tubes put in...they cultured the stuff in his nose and he had staph

and pneumonia bacteria in his nose. So he is on another antibiotic that he

takes twice a day for 21 days.

My real concern is this...at school he takes Pulimocort everyday and Albuterol

as needed. Before Christmas I went to get his machine (nebulizer) to bring home

for the holidays and personally pulled another students tubing and mask off of

his machine. Also, his medication wasn't locked up. I went back in before he

had surgery and it was still not locked up. Also, the school nurse keeps his

machine set up. I wrote a complaint letter asking that she rinse his mask daily

and put it in a bag. I also asked if she would lock his medication up.

The district asked me for a release to talk to the doctor...I signed it...the

nurse supposedly called and the doctor told her that his condition was mild and

he should be treated like any other child. He also said that the mask didn't

need to be cleaned daily. Does this make any sense to anyone????? (now I do

want him treated like everyone else) but they aren't the ones with him when he

is sick.

What should I do? I can't quit work...I work in the district he attends

school. Should I call the doctor myself and explain my dilema. All I want is

common sense hygiene to occur...I hate this that the condition is 'bad enough "

Any suggestions would be appreciated.

Jodi

------------ --------- --------- ---

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Personally, in addition to everything everyone else has said about the need for

cleaning and proper storage, I would also want to know why your son's nebulizer

was being used by another student!

mom to , 5 GSD and PIDD

Meredith, 3 GSD and PIDD

, 8 healthy

Huntsville, AL for 23 more days

www.caringbridge.org/visit/mhobbs

On Wed Mar 5 8:29 , Barbara Jimenez <mother5590@...> sent:

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Jodi,

>

>I would be VERY surprised if the doctor said this to the school. I would expect

it came from " staff " and in this day and age it is generally medical assistant (

who know nothing about nothing). The two things I would do is first I would get

a doctors appt and find out what your doctor wants you to do in person. I would

make this your immunologist not Ped. Then I would call the state school Board of

Education and ask them what the protocol is for meds and cleaning medical

equipment ( ask them to mail or fax or email it to you) and then write a letter

to the school district and again request that your sons medications follow

appropriate protocol. They are required by the Dept. of Health to follow

protocol that has to be in writing. Find out what it is and then have the DOH

make them enforce. File a complaint with the DOH and also the DOE. I hope this

helps. You will know what the school is suppose to do and secondly you will not

have to argue with them. I

>

> use to write medical protocols for a private school and we were required by WA

law to have all meds locked up ( filing cabinet) and also we had to clean all

equipment per protocol. You might ask them how often they are cleaning the

equipt and what are they guidelines. Or you could bring them new tubing weekly.

I would say it is not necessary to fully clean it but weekly. But the mask

should be rinsed in hot soapy water daily and then put out to dry and covered

with something. I can see why they are balking at it because it is a lot of work

but it could also be a source for reinfection. NO the number of infections you

are dealing with is not normal and or mild. You may also need some help with a

Pulmonologist or ENT to get the school and your PED to get it. Do you have

titers back on his antibody production? If you not you may need to see a further

work up if you doctor thinks that it is " mild " without documentation. As so

many have said on this list.

>

> It is not the numbers but the function and clinical picture that tell the full

story. I am so sorry you are having to deal with all of this. Also you may want

to go to the IDF site and get info for the school about Immune disorders. I know

we were not fully listened to until we got them this info. And even after that

it was a constant battle for them to " get it " .

>

>

>

>BARBIE

>

>

>

> questions

>

>

>

>Hi, it has been awhile since I have written anything. My son was diagnoised

with Hypogammaglobulinem ia in August of 2007. He also started school in

August...he has had 13 ear infections, several sinus infections.. .he took Cedax

and Augmenten ES for all of them. Three weeks ago he had his second set of ear

tubes put in...they cultured the stuff in his nose and he had staph and

pneumonia bacteria in his nose. So he is on another antibiotic that he takes

twice a day for 21 days.

>

>

>

> My real concern is this...at school he takes Pulimocort everyday and

Albuterol as needed. Before Christmas I went to get his machine (nebulizer) to

bring home for the holidays and personally pulled another students tubing and

mask off of his machine. Also, his medication wasn't locked up. I went back in

before he had surgery and it was still not locked up. Also, the school nurse

keeps his machine set up. I wrote a complaint letter asking that she rinse his

mask daily and put it in a bag. I also asked if she would lock his medication

up.

>

>

>

> The district asked me for a release to talk to the doctor...I signed it...the

nurse supposedly called and the doctor told her that his condition was mild and

he should be treated like any other child. He also said that the mask didn't

need to be cleaned daily. Does this make any sense to anyone????? (now I do

want him treated like everyone else) but they aren't the ones with him when he

is sick.

>

>

>

> What should I do? I can't quit work...I work in the district he attends

school. Should I call the doctor myself and explain my dilema. All I want is

common sense hygiene to occur...I hate this that the condition is 'bad enough "

>

>

>

> Any suggestions would be appreciated.

>

>

>

> Jodi

>

>

>

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

>

>Looking for last minute shopping deals? Find them fast with Search.

>

>

>

>

[Guest guest]

WHY IN THE WORLD IS YOUR SONS NEBULIZER MACHINE BEING USED BY ANOTHER

CHILD?

On top of the not cleaning it for use by your child they probably are

not cleaning it for the other child too...and replacement of nebulizer

machines by insurance companies are not usually on a yearly basis so

they are using YOUR machine to keep the other machines from being worn

out...not fair!

and the illnesses that could be passed on makes my skin crawl that

they would even think its ok to so casually use it on another child

while you have a child with major issues....for cripes sake....

I would be raising cane in that school...Im not saying you arent doing

what you should do...I am saying that I would seek out the answers and

make sure that they understood COMPLETELY the nature of his DX ...have

the doctor write it out in common language.

If you continue to have issues the school board is who you need to go

to and write out the problem and also see them in person...make sure

you take the written explanation with you so they cannot ignore

you...I had an issue with the school when my kids were having medical

issues and I ended up going to the board and they handles it quickly.

[Guest guest]

I have taken all of that information. She supposedly talked with the

immunologist...i am waiting for him to call me back. Why was another student

using the machine...I don't know...the nurse's reaction was " they are designed

to not spread infection. " to which I replied I don't care...it is our machine

and only he should use it. I am really stuck in a rock and a hard place.

Barbara Jimenez <mother5590@...> wrote:

Jodi,

I would be VERY surprised if the doctor said this to the school. I would expect

it came from " staff " and in this day and age it is generally medical assistant (

who know nothing about nothing). The two things I would do is first I would get

a doctors appt and find out what your doctor wants you to do in person. I would

make this your immunologist not Ped. Then I would call the state school Board of

Education and ask them what the protocol is for meds and cleaning medical

equipment ( ask them to mail or fax or email it to you) and then write a letter

to the school district and again request that your sons medications follow

appropriate protocol. They are required by the Dept. of Health to follow

protocol that has to be in writing. Find out what it is and then have the DOH

make them enforce. File a complaint with the DOH and also the DOE. I hope this

helps. You will know what the school is suppose to do and secondly you will not

have to argue with them. I

use to write medical protocols for a private school and we were required by WA

law to have all meds locked up ( filing cabinet) and also we had to clean all

equipment per protocol. You might ask them how often they are cleaning the

equipt and what are they guidelines. Or you could bring them new tubing weekly.

I would say it is not necessary to fully clean it but weekly. But the mask

should be rinsed in hot soapy water daily and then put out to dry and covered

with something. I can see why they are balking at it because it is a lot of work

but it could also be a source for reinfection. NO the number of infections you

are dealing with is not normal and or mild. You may also need some help with a

Pulmonologist or ENT to get the school and your PED to get it. Do you have

titers back on his antibody production? If you not you may need to see a further

work up if you doctor thinks that it is " mild " without documentation. As so many

have said on this list.

It is not the numbers but the function and clinical picture that tell the full

story. I am so sorry you are having to deal with all of this. Also you may want

to go to the IDF site and get info for the school about Immune disorders. I know

we were not fully listened to until we got them this info. And even after that

it was a constant battle for them to " get it " .

BARBIE

questions

Hi, it has been awhile since I have written anything. My son was diagnoised with

Hypogammaglobulinem ia in August of 2007. He also started school in August...he

has had 13 ear infections, several sinus infections.. .he took Cedax and

Augmenten ES for all of them. Three weeks ago he had his second set of ear tubes

put in...they cultured the stuff in his nose and he had staph and pneumonia

bacteria in his nose. So he is on another antibiotic that he takes twice a day

for 21 days.

My real concern is this...at school he takes Pulimocort everyday and Albuterol

as needed. Before Christmas I went to get his machine (nebulizer) to bring home

for the holidays and personally pulled another students tubing and mask off of

his machine. Also, his medication wasn't locked up. I went back in before he had

surgery and it was still not locked up. Also, the school nurse keeps his machine

set up. I wrote a complaint letter asking that she rinse his mask daily and put

it in a bag. I also asked if she would lock his medication up.

The district asked me for a release to talk to the doctor...I signed it...the

nurse supposedly called and the doctor told her that his condition was mild and

he should be treated like any other child. He also said that the mask didn't

need to be cleaned daily. Does this make any sense to anyone????? (now I do want

him treated like everyone else) but they aren't the ones with him when he is

sick.

What should I do? I can't quit work...I work in the district he attends school.

Should I call the doctor myself and explain my dilema. All I want is common

sense hygiene to occur...I hate this that the condition is 'bad enough "

Any suggestions would be appreciated.

Jodi

------------ --------- --------- ---

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

We were doing the pulmicort twice daily, but with the allergy season kicking up

here in Texas, has had a really tough time this year, so the doctor

added the third dose. I don't want the school involved at all, especially when

the nurse is so inadequate. We i first told her of his diagnosis, she asked if

he could be a case study for her husband...how insensitive. Then she didn't

even call him by the right name...it was for the first whole half of the

year. When he does go to the clinic, she dismisses his complaints, which he

never does complain...so when he does we know it is bad. I hate this.

rfrench496 <bluemtnfarm@...> wrote: My son has CVID and asthma

also. I wouldn't be very happy about the

whole mask/tubing issue, either!! Mark takes pulmicort 2 x day

(prn) and when he needs it, I give it to him before school and after

supper, that way the school is not involved. Would that be an option

for you to reduce the treatments at school?

I'm not sure from your message, but I would guess that the school

nurse contacted your pediatrician about the hypogam. It might be a

good idea to have her actually contact your immunologist, as some

peds aren't as up-to-date on the ins and outs of PID. There are

things my ped thinks aren't that significant whereas our immunologist

acts on it right away. Just a thought for you.

Mark started Kindergarten this year and it was hard. You want them

to be as " normal " as possible, but we still have to use caution in

situations others wouldn't look twice at. I set up a meeting with

the teacher, school nurse, and principal before school started to

give them background on Mark and the different issues of PID. That

might be an idea too, as so many people look at our kids and think

they " look great " so there's no problem. IDF has a great resource

for school personnel that you can obtain. I got two copies, one for

his teacher and one for the school nurse and highlighted the parts

that pertain to Mark.

Good luck to you. Mark has been on atb's all winter it seems for a

sinus infection that just won't go away. These kids are braver than

a lot of adults I know. Spring is coming!

, mom to Mark, CVID, 6

>

> Hi, it has been awhile since I have written anything. My son was

diagnoised with Hypogammaglobulinemia in August of 2007. He also

started school in August...he has had 13 ear infections, several

sinus infections...he took Cedax and Augmenten ES for all of them.

Three weeks ago he had his second set of ear tubes put in...they

cultured the stuff in his nose and he had staph and pneumonia

bacteria in his nose. So he is on another antibiotic that he takes

twice a day for 21 days.

>

> My real concern is this...at school he takes Pulimocort everyday

and Albuterol as needed. Before Christmas I went to get his machine

(nebulizer) to bring home for the holidays and personally pulled

another students tubing and mask off of his machine. Also, his

medication wasn't locked up. I went back in before he had surgery

and it was still not locked up. Also, the school nurse keeps his

machine set up. I wrote a complaint letter asking that she rinse his

mask daily and put it in a bag. I also asked if she would lock his

medication up.

>

> The district asked me for a release to talk to the doctor...I

signed it...the nurse supposedly called and the doctor told her that

his condition was mild and he should be treated like any other

child. He also said that the mask didn't need to be cleaned daily.

Does this make any sense to anyone????? (now I do want him treated

like everyone else) but they aren't the ones with him when he is

sick.

>

> What should I do? I can't quit work...I work in the district he

attends school. Should I call the doctor myself and explain my

dilema. All I want is common sense hygiene to occur...I hate this

that the condition is 'bad enough "

>

> Any suggestions would be appreciated.

>

> Jodi

>

>

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

> Looking for last minute shopping deals? Find them fast with

Search.

>

>

[Guest guest]

Jodi,

In addition to what others have suggested, you might try calling Kathy Antilla

at the Immune Deficiency Foundation. She wrote the book about special

accomodations in school for PID kids. She is a former teacher.

I think there is more to this story and it is not out of the questionthat the

school is manipulating you to make it easier on their alreadyovertaxed system

(we call it " social loafing " in psychology). You might consider writing a

friendly letter (about what IS to be done) to the school and asking your immuno

and/or peds doc to review and co-sign the letter. Documents are more powerful

than phone calls, anyway. It is possible that the doc said, " to treat your

child like anyone else " but that doesn't mean throwing basic safely and hygiene

to the wind. Also, I think (help me out ladies), that it is your right to give

or withdrawauthorization for the school to call your doctors -- unless it is

anemergency. But, please ask Kathy about all of this because she is much

better than me at dealing with " the system " .

Ultimately, it is the parents and not the docs responsibility to make sure that

the child is safe (our GI doc told us that after *he* messed up!)--so, do what

you must.

mom to CVIDer

[Guest guest]

I have 3 children at home that use neb machines frequently. The

pulmonologist does not want them to share at all. They all have their

own machines. He would be vivid if he heard that complete strangers

are sharing a machine. That's just wrong.

Proud Mom of 4:

3yr old : PID~combine immune deficiency and etc.....

8yr old Hannah: asthma, allergies, urinary reflux, T & A

6yr old Noah: asthma, ADD

5yr old : allergies, chronic sinusitis, one enlarge tonsil

www.caringbridge. org/visit/ matthewfranson

> Jodi,

> I would be VERY surprised if the doctor said this to the school. I

would expect it came from " staff " and in this day and age it is

generally medical assistant ( who know nothing about nothing). The

two things I would do is first I would get a doctors appt and find

out what your doctor wants you to do in person. I would make this

your immunologist not Ped. Then I would call the state school Board

of Education and ask them what the protocol is for meds and cleaning

medical equipment ( ask them to mail or fax or email it to you) and

then write a letter to the school district and again request that

your sons medications follow appropriate protocol. They are required

by the Dept. of Health to follow protocol that has to be in writing.

Find out what it is and then have the DOH make them enforce. File a

complaint with the DOH and also the DOE. I hope this helps. You will

know what the school is suppose to do and secondly you will not have

to argue with them. I

> use to write medical protocols for a private school and we were

required by WA law to have all meds locked up ( filing cabinet) and

also we had to clean all equipment per protocol. You might ask them

how often they are cleaning the equipt and what are they guidelines.

Or you could bring them new tubing weekly. I would say it is not

necessary to fully clean it but weekly. But the mask should be rinsed

in hot soapy water daily and then put out to dry and covered with

something. I can see why they are balking at it because it is a lot

of work but it could also be a source for reinfection. NO the number

of infections you are dealing with is not normal and or mild. You may

also need some help with a Pulmonologist or ENT to get the school and

your PED to get it. Do you have titers back on his antibody

production? If you not you may need to see a further work up if you

doctor thinks that it is " mild " without documentation. As so many

have said on this list.

> It is not the numbers but the function and clinical picture that

tell the full story. I am so sorry you are having to deal with all of

this. Also you may want to go to the IDF site and get info for the

school about Immune disorders. I know we were not fully listened to

until we got them this info. And even after that it was a constant

battle for them to " get it " .

>

> BARBIE

>

> questions

>

> Hi, it has been awhile since I have written anything. My son was

diagnoised with Hypogammaglobulinem ia in August of 2007. He also

started school in August...he has had 13 ear infections, several

sinus infections.. .he took Cedax and Augmenten ES for all of them.

Three weeks ago he had his second set of ear tubes put in...they

cultured the stuff in his nose and he had staph and pneumonia

bacteria in his nose. So he is on another antibiotic that he takes

twice a day for 21 days.

>

> My real concern is this...at school he takes Pulimocort everyday

and Albuterol as needed. Before Christmas I went to get his machine

(nebulizer) to bring home for the holidays and personally pulled

another students tubing and mask off of his machine. Also, his

medication wasn't locked up. I went back in before he had surgery and

it was still not locked up. Also, the school nurse keeps his machine

set up. I wrote a complaint letter asking that she rinse his mask

daily and put it in a bag. I also asked if she would lock his

medication up.

>

> The district asked me for a release to talk to the doctor...I

signed it...the nurse supposedly called and the doctor told her that

his condition was mild and he should be treated like any other child.

He also said that the mask didn't need to be cleaned daily. Does this

make any sense to anyone????? (now I do want him treated like

everyone else) but they aren't the ones with him when he is sick.

>

> What should I do? I can't quit work...I work in the district he

attends school. Should I call the doctor myself and explain my

dilema. All I want is common sense hygiene to occur...I hate this

that the condition is 'bad enough "

>

> Any suggestions would be appreciated.

>

> Jodi

>

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

> Looking for last minute shopping deals? Find them fast with

Search.

>

>

[Guest guest]

I don't want the school involved at all, especially when the nurse is so

inadequate. We i first told her of his diagnosis, she asked if he could be a

case study for her husband...how insensitive. Then she didn't even call him by

the right name...it was for the first whole half of the year. When he does

go to the clinic, she dismisses his complaints, which he never does

complain...so when he does we know it is bad. I hate this.

I know exactly how you feel! We had these same issues last year so when we did

his 504 we had it added that if is sick, she is to hand HIM the phone and

let him call us. We told her that we were protecting her so nothing is

missed...and she doesn't get blamed if he truly is sick. She was more concerned

about covering her butt than my son's illness, but, hey, whatever works!

@...: tyrajodi@...: Wed, 5 Mar 2008 11:43:19

-0800Subject: Re: Re: questions

We were doing the pulmicort twice daily, but with the allergy season kicking up

here in Texas, has had a really tough time this year, so the doctor

added the third dose. I don't want the school involved at all, especially when

the nurse is so inadequate. We i first told her of his diagnosis, she asked if

he could be a case study for her husband...how insensitive. Then she didn't even

call him by the right name...it was for the first whole half of the year.

When he does go to the clinic, she dismisses his complaints, which he never does

complain...so when he does we know it is bad. I hate this.rfrench496

<bluemtnfarm@...> wrote: My son has CVID and asthma also. I wouldn't be

very happy about the whole mask/tubing issue, either!! Mark takes pulmicort 2 x

day (prn) and when he needs it, I give it to him before school and after supper,

that way the school is not involved. Would that be an option for you to reduce

the treatments at school?I'm not sure from your message, but I would guess that

the school nurse contacted your pediatrician about the hypogam. It might be a

good idea to have her actually contact your immunologist, as some peds aren't as

up-to-date on the ins and outs of PID. There are things my ped thinks aren't

that significant whereas our immunologist acts on it right away. Just a thought

for you. Mark started Kindergarten this year and it was hard. You want them to

be as " normal " as possible, but we still have to use caution in situations

others wouldn't look twice at. I set up a meeting with the teacher, school

nurse, and principal before school started to give them background on Mark and

the different issues of PID. That might be an idea too, as so many people look

at our kids and think they " look great " so there's no problem. IDF has a great

resource for school personnel that you can obtain. I got two copies, one for his

teacher and one for the school nurse and highlighted the parts that pertain to

Mark. Good luck to you. Mark has been on atb's all winter it seems for a sinus

infection that just won't go away. These kids are braver than a lot of adults I

know. Spring is coming!, mom to Mark, CVID, 6>> Hi, it has been awhile

since I have written anything. My son was diagnoised with Hypogammaglobulinemia

in August of 2007. He also started school in August...he has had 13 ear

infections, several sinus infections...he took Cedax and Augmenten ES for all of

them. Three weeks ago he had his second set of ear tubes put in...they cultured

the stuff in his nose and he had staph and pneumonia bacteria in his nose. So he

is on another antibiotic that he takes twice a day for 21 days. > > My real

concern is this...at school he takes Pulimocort everyday and Albuterol as

needed. Before Christmas I went to get his machine (nebulizer) to bring home for

the holidays and personally pulled another students tubing and mask off of his

machine. Also, his medication wasn't locked up. I went back in before he had

surgery and it was still not locked up. Also, the school nurse keeps his machine

set up. I wrote a complaint letter asking that she rinse his mask daily and put

it in a bag. I also asked if she would lock his medication up.> > The district

asked me for a release to talk to the doctor...I signed it...the nurse

supposedly called and the doctor told her that his condition was mild and he

should be treated like any other child. He also said that the mask didn't need

to be cleaned daily. Does this make any sense to anyone????? (now I do want him

treated like everyone else) but they aren't the ones with him when he is sick. >

> What should I do? I can't quit work...I work in the district he attends

school. Should I call the doctor myself and explain my dilema. All I want is

common sense hygiene to occur...I hate this that the condition is 'bad enough " >

> Any suggestions would be appreciated.> > Jodi> > >

---------------------------------> Looking for last minute shopping deals? Find

them fast with Search.> > [Non-text portions of this message have been

removed]>---------------------------------Never miss a thing. Make your

homepage.

[Guest guest]

Jodi,

If you haven't already talked with the immuno, you might ask if he would object

to you writing a nice letter and then having him or his nurse review/co-sign.

questions

Hi, it has been awhile since I have written anything. My son was diagnoised with

Hypogammaglobulinem ia in August of 2007. He also started school in August...he

has had 13 ear infections, several sinus infections.. .he took Cedax and

Augmenten ES for all of them. Three weeks ago he had his second set of ear tubes

put in...they cultured the stuff in his nose and he had staph and pneumonia

bacteria in his nose. So he is on another antibiotic that he takes twice a day

for 21 days.

My real concern is this...at school he takes Pulimocort everyday and Albuterol

as needed. Before Christmas I went to get his machine (nebulizer) to bring home

for the holidays and personally pulled another students tubing and mask off of

his machine. Also, his medication wasn't locked up. I went back in before he had

surgery and it was still not locked up. Also, the school nurse keeps his machine

set up. I wrote a complaint letter asking that she rinse his mask daily and put

it in a bag. I also asked if she would lock his medication up.

The district asked me for a release to talk to the doctor...I signed it...the

nurse supposedly called and the doctor told her that his condition was mild and

he should be treated like any other child. He also said that the mask didn't

need to be cleaned daily. Does this make any sense to anyone????? (now I do want

him treated like everyone else) but they aren't the ones with him when he is

sick.

What should I do? I can't quit work...I work in the district he attends school.

Should I call the doctor myself and explain my dilema. All I want is common

sense hygiene to occur...I hate this that the condition is 'bad enough "

Any suggestions would be appreciated.

Jodi

------------ --------- --------- ---

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

do you have a friend that would be willing to go down

to the school adn give the meds? someone you trust?

April

--- Jodi Tyra <tyrajodi@...> wrote:

> I have taken all of that information. She

> supposedly talked with the immunologist...i am

> waiting for him to call me back. Why was another

> student using the machine...I don't know...the

> nurse's reaction was " they are designed to not

> spread infection. " to which I replied I don't

> care...it is our machine and only he should use it.

> I am really stuck in a rock and a hard place.

>

> Barbara Jimenez <mother5590@...> wrote:

> Jodi,

> I would be VERY surprised if the doctor said this to

> the school. I would expect it came from " staff " and

> in this day and age it is generally medical

> assistant ( who know nothing about nothing). The two

> things I would do is first I would get a doctors

> appt and find out what your doctor wants you to do

> in person. I would make this your immunologist not

> Ped. Then I would call the state school Board of

> Education and ask them what the protocol is for meds

> and cleaning medical equipment ( ask them to mail or

> fax or email it to you) and then write a letter to

> the school district and again request that your sons

> medications follow appropriate protocol. They are

> required by the Dept. of Health to follow protocol

> that has to be in writing. Find out what it is and

> then have the DOH make them enforce. File a

> complaint with the DOH and also the DOE. I hope this

> helps. You will know what the school is suppose to

> do and secondly you will not have to argue with

> them. I

> use to write medical protocols for a private school

> and we were required by WA law to have all meds

> locked up ( filing cabinet) and also we had to clean

> all equipment per protocol. You might ask them how

> often they are cleaning the equipt and what are they

> guidelines. Or you could bring them new tubing

> weekly. I would say it is not necessary to fully

> clean it but weekly. But the mask should be rinsed

> in hot soapy water daily and then put out to dry and

> covered with something. I can see why they are

> balking at it because it is a lot of work but it

> could also be a source for reinfection. NO the

> number of infections you are dealing with is not

> normal and or mild. You may also need some help with

> a Pulmonologist or ENT to get the school and your

> PED to get it. Do you have titers back on his

> antibody production? If you not you may need to see

> a further work up if you doctor thinks that it is

> " mild " without documentation. As so many have said

> on this list.

> It is not the numbers but the function and clinical

> picture that tell the full story. I am so sorry you

> are having to deal with all of this. Also you may

> want to go to the IDF site and get info for the

> school about Immune disorders. I know we were not

> fully listened to until we got them this info. And

> even after that it was a constant battle for them to

> " get it " .

>

> BARBIE

>

> questions

>

> Hi, it has been awhile since I have written

> anything. My son was diagnoised with

> Hypogammaglobulinem ia in August of 2007. He also

> started school in August...he has had 13 ear

> infections, several sinus infections.. .he took

> Cedax and Augmenten ES for all of them. Three weeks

> ago he had his second set of ear tubes put in...they

> cultured the stuff in his nose and he had staph and

> pneumonia bacteria in his nose. So he is on another

> antibiotic that he takes twice a day for 21 days.

>

> My real concern is this...at school he takes

> Pulimocort everyday and Albuterol as needed. Before

> Christmas I went to get his machine (nebulizer) to

> bring home for the holidays and personally pulled

> another students tubing and mask off of his machine.

> Also, his medication wasn't locked up. I went back

> in before he had surgery and it was still not locked

> up. Also, the school nurse keeps his machine set up.

> I wrote a complaint letter asking that she rinse his

> mask daily and put it in a bag. I also asked if she

> would lock his medication up.

>

> The district asked me for a release to talk to the

> doctor...I signed it...the nurse supposedly called

> and the doctor told her that his condition was mild

> and he should be treated like any other child. He

> also said that the mask didn't need to be cleaned

> daily. Does this make any sense to anyone????? (now

> I do want him treated like everyone else) but they

> aren't the ones with him when he is sick.

>

> What should I do? I can't quit work...I work in the

> district he attends school. Should I call the doctor

> myself and explain my dilema. All I want is common

> sense hygiene to occur...I hate this that the

> condition is 'bad enough "

>

> Any suggestions would be appreciated.

>

> Jodi

>

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

> Looking for last minute shopping deals? Find them

> fast with Search.

>

> [Non-text portions of this message have been

> removed]

>

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=== message truncated ===

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well i just talked with our immunologist...he refuses to get involved. i am

trying our peditrician...the immunologist we see is working in conjunction with

the immunologists at TCH in Houston. He told me this morning all of his levels

were good except for the IgE which was very low normal.

You know all I want is for his mask to be rinsed and put in a plastic bag and

for the meds to be locked up. unfortunately I also work at the same school...so

she wants to get me for harrassment.

laura smith <iamlaurasmith@...> wrote:

I don't want the school involved at all, especially when the nurse is so

inadequate. We i first told her of his diagnosis, she asked if he could be a

case study for her husband...how insensitive. Then she didn't even call him by

the right name...it was for the first whole half of the year. When he does

go to the clinic, she dismisses his complaints, which he never does

complain...so when he does we know it is bad. I hate this.

I know exactly how you feel! We had these same issues last year so when we did

his 504 we had it added that if is sick, she is to hand HIM the phone and

let him call us. We told her that we were protecting her so nothing is

missed...and she doesn't get blamed if he truly is sick. She was more concerned

about covering her butt than my son's illness, but, hey, whatever works!

@...: tyrajodi@...: Wed, 5 Mar 2008 11:43:19

-0800Subject: Re: Re: questions

We were doing the pulmicort twice daily, but with the allergy season kicking up

here in Texas, has had a really tough time this year, so the doctor

added the third dose. I don't want the school involved at all, especially when

the nurse is so inadequate. We i first told her of his diagnosis, she asked if

he could be a case study for her husband...how insensitive. Then she didn't even

call him by the right name...it was for the first whole half of the year.

When he does go to the clinic, she dismisses his complaints, which he never does

complain...so when he does we know it is bad. I hate this.rfrench496

<bluemtnfarm@...> wrote: My son has CVID and asthma also. I wouldn't be

very happy about the whole mask/tubing issue, either!! Mark takes pulmicort 2 x

day (prn) and when he needs it, I give it to him before school and after supper,

that way the school is not involved. Would that be an option for you to reduce

the treatments at school?I'm not sure from

your message, but I would guess that the school nurse contacted your

pediatrician about the hypogam. It might be a good idea to have her actually

contact your immunologist, as some peds aren't as up-to-date on the ins and outs

of PID. There are things my ped thinks aren't that significant whereas our

immunologist acts on it right away. Just a thought for you. Mark started

Kindergarten this year and it was hard. You want them to be as " normal " as

possible, but we still have to use caution in situations others wouldn't look

twice at. I set up a meeting with the teacher, school nurse, and principal

before school started to give them background on Mark and the different issues

of PID. That might be an idea too, as so many people look at our kids and think

they " look great " so there's no problem. IDF has a great resource for school

personnel that you can obtain. I got two copies, one for his teacher and one for

the school nurse and highlighted the parts that pertain to Mark.

Good luck to you. Mark has been on atb's all winter it seems for a sinus

infection that just won't go away. These kids are braver than a lot of adults I

know. Spring is coming!, mom to Mark, CVID, 6>> Hi, it has been awhile

since I have written anything. My son was diagnoised with Hypogammaglobulinemia

in August of 2007. He also started school in August...he has had 13 ear

infections, several sinus infections...he took Cedax and Augmenten ES for all of

them. Three weeks ago he had his second set of ear tubes put in...they cultured

the stuff in his nose and he had staph and pneumonia bacteria in his nose. So he

is on another antibiotic that he takes twice a day for 21 days. > > My real

concern is this...at school he takes Pulimocort everyday and Albuterol as

needed. Before Christmas I went to get his machine (nebulizer) to bring home for

the holidays and personally pulled another students tubing and mask

off of his machine. Also, his medication wasn't locked up. I went back in

before he had surgery and it was still not locked up. Also, the school nurse

keeps his machine set up. I wrote a complaint letter asking that she rinse his

mask daily and put it in a bag. I also asked if she would lock his medication

up.> > The district asked me for a release to talk to the doctor...I signed

it...the nurse supposedly called and the doctor told her that his condition was

mild and he should be treated like any other child. He also said that the mask

didn't need to be cleaned daily. Does this make any sense to anyone????? (now I

do want him treated like everyone else) but they aren't the ones with him when

he is sick. > > What should I do? I can't quit work...I work in the district he

attends school. Should I call the doctor myself and explain my dilema. All I

want is common sense hygiene to occur...I hate this that the condition is 'bad

enough " > > Any suggestions would be appreciated.>

> Jodi> > > ---------------------------------> Looking for last minute shopping

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[Guest guest]

Jodi:

My son Blake is 16. When he was in the school(Private Christian)grades

k5-2nd....when not in the hospital!!! They asked if they could have another

student use Blake's machine because the other student did not have a second one.

I spoke with he child's mom & we got along as long as her child had his OWN

tubing & mask & placed Blake's in a zip-loc bag with his name(I provided one for

both)on it. Since they were in a different times, there was no problem with

this. we did this for a couple of yrs.

If your child has to have treatment, there really is no reason to lock it up.

I would be afraid that my child would have a flare up & NEED the meds. right

away. If it is locked up, who is to say the person who locked it up will be out

of school & may have the key.....that is a matter of life & death in a child who

HAS to be nebulized at school. If Blake were actually in school now(Homebound

on Medical Leave & homeschooled), he would still need the treatments. It would

not bother me about some else using it unless I were not asked & they were using

Blake's cup, tubing & mask.

As far as the Nurse calling the school, I too signed a note saying they can

call the Dr. but ONLY if I were present & I could talk to the Dr. first & then

he could relay what was needed to be done as school. The Nurse at teh Dr.s

office can not allow the school nurse to talk directly with the Dr. unless you

have signed & had a seal placed on it that you are willing to prudge medical

info on your child.

Best bet, is the School Nurse did NOT talk to the Dr. him/herself. She spoke

to someone in the office at the Dr. office. If your child is on IVIG or SCIG, I

don't believe the Dr. would call his health " Mild " !!!!

I actually went through this. Blake's principal & Head Master of the school

wanted this permission. Dad said No!!! He said if they need to talk to the Dr.

Then they could go with us to an appt. We were in the right in saying NO!! You

do not have to give them permission to talk & perge your child. The reason now

is the Privacy act. Hippa Law states clearly that NO dr. is to talk about your

child unless you are present!!!!

I would call the Dr. ask Him/her if they acually spoke with the SN. If not,

then call the Nurse on the rug!!! Plain as day, if she lied, then she can be

fired....I would not trust my son's health to someone who would lie just to make

you think they are in the right.....Mild or NOT.

If you ask me, PIDD is NOT to be taken lightly & neither is Asthma....I have

seen my son nearly die because of both!!!!!

just my 3 cents worth!!!

Mom to Blake 16, Severe Combined Immunodeficiency(SCID) With Complete T-Cell

Dysfunction

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Jodi Tyra <tyrajodi@...> wrote:

Hi, it has been awhile since I have written anything. My son was

diagnoised with Hypogammaglobulinemia in August of 2007.

I went to get his machine (nebulizer) to bring home for the holidays and

personally pulled another students tubing and mask off of his machine. Also, his

medication wasn't locked up. I went back in before he had surgery and it was

still not locked up. Also, the school nurse keeps his machine set up. I wrote a

complaint letter asking that she rinse his mask daily and put it in a bag. I

also asked if she would lock his medication up.

The district asked me for a release to talk to the doctor...I signed it...the

nurse supposedly called and the doctor told her that his condition was mild and

he should be treated like any other child. He also said that the mask didn't

need to be cleaned daily. Does this make any sense to anyone????? (now I do want

him treated like everyone else) but they aren't the ones with him when he is

sick.

What should I do? I can't quit work...I work in the district he attends school.

Should I call the doctor myself and explain my dilema. All I want is common

sense hygiene to occur...I hate this that the condition is 'bad enough "

Any suggestions would be appreciated.

Jodi

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