Ursula

March 8, 2001

>>We had a child one time come from an outlying hospital

and mom was giving Zithromax for what had been diagnosed an ear infection.

The local hospital sent her to us when her workup was septic but failed to

give her a loading dose of Rocephin before the ambulance transport. By the

time she got to the PICU she was showing petechiae and started to stop

breathing. Turned out to be meningitis and she passed later that morning.

If only the local hospital had just hooked her up to a quick broad spectrum

antibiotic but they wanted to send us the culture reports they had drawn and

waited on those.

<<<<

Ursula,

Oh, your story made me cringe. had been on amoxicillin for

" back-to-back " ear infections, which more likely was one unresolved one. She

awoke one morning with a terrible, unusual cry and had a fever of 103 rectal,

which she'd never had before. By the time we got her to the ped she was

starting to lose consciousness (we still had no idea something so serious was

going on!!). The ped agonized over giving the shot of Rocephin there, because

she didn't want to mess up the lumbar puncture when she sent us to the ER.

She DID NOT give the shot. fell into a coma on the way to the ER

(pneumoccocal meningitis). My husband to this day does not forgive her for

that, he feels she should have given the shot. Since everything turned out

okay (as far as we know, so far!), I am satisfied because the LP was able to

tell us the first antibiotic they gave at the hospital, Cefotaxime (along

with Vancomycin, which did work), was not going to work as well as

Ceftriaxone. We wouldn't have known that if we didn't get a clean LP. But

reading your story sent chills up my spine because I know it could just as

easily have gone the other way. And I also know our regular ped would have

given the Rocephin, without hesitation. In fact, he gives it to all the

time!!! ) Well, every time she's over 102 rectal. Thanks for your

reminder, seriously. Next time I won't be such a know-it-all since I know

it's so common to give the Rocephin.

(mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet)

March 19, 2001

Hi,

Just wanted to give you an update on 's article that he wrote about his

IVIG treatments. It was titled, IT Would Be Strange...He won 1 St. place for

his age group 3-5th grade in the state.

We just received the official letter from the California State PTA. He will

receive the Award Of Excellence, an engraved medallion, a $100 savings bond

and an Awards and Recognition book. Which his lit piece will be in. He has

also been asked to read his piece at the California State Convention in San

on April 28th, there will be 5,000 people in attendance!! They will

also take care of our accommodations and travel arrangements. has agreed

to read it!

His peice has also been forwarded to the National PTA for future

consideration.

We are looking forward to Baltimore! I don't post much but am so thankful

for this site. has been having a real struggle these past two weeks but

it has been reassuring reading the post and knowing there is so much support

out there! Thank you again for managing this site!

le

10, selective antibody def. IVIG 3 years every three weeks,

syringomyelia

March 19, 2001

Hi,

Just wanted to give you an update on 's article that he wrote about his

IVIG treatments. It was titled, IT Would Be Strange...He won 1 St. place for

his age group 3-5th grade in the state.

We just received the official letter from the California State PTA. He will

receive the Award Of Excellence, an engraved medallion, a $100 savings bond

and an Awards and Recognition book. Which his lit piece will be in. He has

also been asked to read his piece at the California State Convention in San

on April 28th, there will be 5,000 people in attendance!! They will

also take care of our accommodations and travel arrangements. has agreed

to read it!

His peice has also been forwarded to the National PTA for future

consideration.

We are looking forward to Baltimore! I don't post much but am so thankful

for this site. has been having a real struggle these past two weeks but

it has been reassuring reading the post and knowing there is so much support

out there! Thank you again for managing this site!

le

10, selective antibody def. IVIG 3 years every three weeks,

syringomyelia

March 28, 2001

No - Macey got an exemption from the pediatrician but it has to be renewed

each year.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

March 28, 2001

No - Macey got an exemption from the pediatrician but it has to be renewed

each year.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

March 28, 2001

No - Macey got an exemption from the pediatrician but it has to be renewed

each year.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

March 28, 2001

I guess we'll have to do that every year too.

Good luck with your upcoming dentist appointment!! I hope Macey comes

through it all well. Will be thinking of you.

RE: Ursula

> No - Macey got an exemption from the pediatrician but it has to be renewed

> each year.

>

> Ursula Holleman uahollem@...

> and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

> kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

>

> http://www.pedpid.com

>

> /group/PedPID

>

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

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

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

advice.

>

March 28, 2001

I guess we'll have to do that every year too.

Good luck with your upcoming dentist appointment!! I hope Macey comes

through it all well. Will be thinking of you.

RE: Ursula

> No - Macey got an exemption from the pediatrician but it has to be renewed

> each year.

>

> Ursula Holleman uahollem@...

> and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

> kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

>

> http://www.pedpid.com

>

> /group/PedPID

>

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

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

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

advice.

>

April 7, 2001

Macey has been on maintenance meds for 2-3 yrs. She

will go back on the Miralax (made by the same company

that makes Go-Lytely) once a day every day. We are to

watch for the same symptoms that brought us back to the

GI. Vomitting, weight loss, stomach cramps

I want to thank everyone for their kind thoughts and

prayers. It has been a wonderful thing to log on and

read the encouraging emails and thoughts that have been

sent. I truly realize once again why I needed to start

this group.

April 17, 2001

Autumn - if has nephrogenic DI (which i think is what you told me

before) then he will never concentrate his urine because he doesn't have the

benefit of using DDAVP. Macey has shown post void and vaginal residual on

all her VCUG's and it is a trying thing for us to keep her clear of yeast

because the after-dribble of the PVR keeps the area moist and a breeding

ground for yeast infections. I'm not quite sure why her bladder size is so

large except that either she was drinking so much fluid before her DI

diagnosis that it just stretched too much. Maybe that means that since she

has been treated for 2 yrs with DDAVP and her volume has gone down that

maybe she will grow into her bladder. Doubtful though because in 98' when

we started the VCUG's her bladder size was 250 cc's and now it's doubled to

over 500 cc's (couldn't get an accurate measurement because at 500 the

Radiologist stopped hanging new dye bottles and just called it quits). The

bladder spasms could be from pressure from too much fluid (large bladder) or

from the bladder being squeezed by fecal impaction. Who knows. Whenever

there's a urinary conversation in discussion groups I like to throw it out

there in case anyone else has similar problems. And see it worked.... walla

your email.

Ursula Holleman

Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney

reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

April 17, 2001

Ursula,

From the way the paper is describing this, there hasn't been a case like

this one in our county for over 20 years. Thank you for the info on this. I

didn't know there are two types of bacterial, only that there is viral and

bacterial. I guess I'm just nervous about it because we only live 3 minutes

from the hospital....can actually see it from our house. Chad has to go

there both tomorrow and Thursday. Wish his treatment wasn't due just yet!

Thanks again and take care.

April 19, 2001

So let me get this straight. You have a CBC drawn with a WBC of 40,000 and

the lab will not release the result until you pay? So who is liable when the

patient dies? There must be a law somewhere to protect this form of

blackmail. I think I would call a regulating agency . or atleast a senator

to make a law preventing this. I thought I had heard them all but boy this is

a new one for me. Blue cross often does not pay for months. BARBIE

April 19, 2001

So let me get this straight. You have a CBC drawn with a WBC of 40,000 and

the lab will not release the result until you pay? So who is liable when the

patient dies? There must be a law somewhere to protect this form of

blackmail. I think I would call a regulating agency . or atleast a senator

to make a law preventing this. I thought I had heard them all but boy this is

a new one for me. Blue cross often does not pay for months. BARBIE

April 19, 2001

So let me get this straight. You have a CBC drawn with a WBC of 40,000 and

the lab will not release the result until you pay? So who is liable when the

patient dies? There must be a law somewhere to protect this form of

blackmail. I think I would call a regulating agency . or atleast a senator

to make a law preventing this. I thought I had heard them all but boy this is

a new one for me. Blue cross often does not pay for months. BARBIE

April 20, 2001

Ursula, when I get tests I do not understand I decided a long time ago to

try......to let it go because I use to ruin my weekends worrying and then

find out on Monday it was nothing to worry about. I had then lost two days

with my family and had made no difference in the big picture. So the

questions that I now ask my self are?

Does this need to be taken care of immediately? ( is it imminent)

Will the result change the way my child needs to be treated?

Is there anything I can personally do about it?

Am I going to kill someone on Monday? ( just kidding, because if I have all

weekend to think about killing someone then it is premeditated murder)I would

rather it be a fit of rage explained by a distraught mother out of her mind

protecting her child.)

I am so empathizing with you that I got carried away. I so often have your

dilemma. Sometimes I wish I could just let someone else make all the

decisions. BARBIE

April 20, 2001

Ursula, when I get tests I do not understand I decided a long time ago to

try......to let it go because I use to ruin my weekends worrying and then

find out on Monday it was nothing to worry about. I had then lost two days

with my family and had made no difference in the big picture. So the

questions that I now ask my self are?

Does this need to be taken care of immediately? ( is it imminent)

Will the result change the way my child needs to be treated?

Is there anything I can personally do about it?

Am I going to kill someone on Monday? ( just kidding, because if I have all

weekend to think about killing someone then it is premeditated murder)I would

rather it be a fit of rage explained by a distraught mother out of her mind

protecting her child.)

I am so empathizing with you that I got carried away. I so often have your

dilemma. Sometimes I wish I could just let someone else make all the

decisions. BARBIE

April 20, 2001

Ursula, when I get tests I do not understand I decided a long time ago to

try......to let it go because I use to ruin my weekends worrying and then

find out on Monday it was nothing to worry about. I had then lost two days

with my family and had made no difference in the big picture. So the

questions that I now ask my self are?

Does this need to be taken care of immediately? ( is it imminent)

Will the result change the way my child needs to be treated?

Is there anything I can personally do about it?

Am I going to kill someone on Monday? ( just kidding, because if I have all

weekend to think about killing someone then it is premeditated murder)I would

rather it be a fit of rage explained by a distraught mother out of her mind

protecting her child.)

I am so empathizing with you that I got carried away. I so often have your

dilemma. Sometimes I wish I could just let someone else make all the

decisions. BARBIE

April 20, 2001

Ursula Holleman wrote:

Ok, so what do I do with the Hib information? Is this

> a red flag or a red herring?

>

> I hate getting lab results on a Friday. Makes for the longest weekend.

>

Ursula, my unsolicited opinion on what to do with the HIB info: pretend

you never got it, and go about the weekend as usual. Nothing you do

this weekend is going to change the answer of the docs next week, and

nothing you do this weekend will make a difference in whether Macey

catches or responds to HIB this very weekend, and you'll just drive

yourself nutty trying to figure everything out, when there probably

isn't a simple answer. If you didn't have the result, and she came down

with sinusitis this weekend, you'd probably use exactly the same

antibiotics and treat her exactly the same you would if you told the

on-call person she had no titers on this result you got today; that

piece of information may affect her long-term management, but it isn't

going to change your weekend, other than to bring you more stress. As

I said to Beth A. in the last (big) message, I think that most of the

time, these individual titer results have to be interpreted in light of

each person's clinical status and their other results, so the doctors'

response to a particular result in one person really doesn't shed a lot

of info on anyone else's situation. I'm not talking about IgG levels

or some of the more basic things, but more about the finer details, like

specific antibody titers. Some people are devastated by an inability to

make H. flu titers (we know a family who has dealt with a different

strain of H. flu for years and is only now seeing the light of day after

years and years of abx and even lung resection), and others really don't

seem to have any problems with it even though their immune system

appears not to respond, either because their immune systems are

compensating well through some other mechanism, because HIB isn't as

prevalent in their particular community (because of immunizations and

antibiotic resistance differences in various parts of the

world/country), or because antibiotic prophylaxis for other things is

covering it okay. HIB responds to a lot of very common antibiotics

(PCNs, cephalosporins, macrolides, even the bactrim Macey's on for

prophylaxis), so I wouldn't let it cause you too much stress before you

get the doctor's opinions on the whole picture.

Have a *good* weekend! :-)

April 20, 2001