Re: So frustrated - What do I do? --Long Response for Melody

[Guest guest]

Melody,

I'm NOT an expert, but those IgA, IgG and IgM numbers don't say " improving "

to me! I think that the small differences are just the normal fluctuation

in your son's levels and probably also in the sensitivity of the lab. We

also have two documented instances where Rebekah's IgA was undetectable, but

was listed as " 14 " by a lab. We learned the hard way that not all labs are

equipped to do immunology blood work correctly.

My dd was 28 months when she was diagnosed, just a few months older than

your son. She had been sick except for the first 3 months and about a month

in the summer. It was never anything life-threatening. I remember praying

for one whopping infection so that I could get their attention! We got

blown off royally since Rebekah never was critically ill. In fact, during

the entire 28 months, Rebekah had probably only had 3 rounds of antibiotics!

Her peds called every single infection a virus. By the time we were

diagnosed, Rebekah was critically ill from a seemingly endless series of

infections that were left untreated and from vaccinations with live

vaccines.

I remember crying and screaming at God. I also felt that I was going

insane. Rebekah seems so sick to me and everyone else acted like it was

nothing. My dh and I even joked that it was like she had no immune system.

How right we were! I know that we even suggested this to the peds and got

laughed at.

What did we do? First, we got a copy of our dd's entire medical history,

including the one pathetic CBC they had done. This helped us document how

many times we'd taken her in. It also showed us how far from normal her

blood work really was. Next, we changed hospital systems. We went to the

system that is associated with a medical school. The nice thing about

changing systems is that the new ped has to read or at least look over the

new record when you carry it into the office and plop it in front of him.

I called mom's I knew all over town and got recommendations for a ped who

was great at diagnostic work and I got an appointment to go over Rebekah's

medical history. I brought my calendar with sick days marked (or should I

say healthy days not marked LOL), the medical record, the blood work

numbers, and a list of symptoms. The ped referred us to a pediatric

hematologist/oncologist who recognized that Rebekah had an immune problem.

About this time, I found this group and discovered that the hemo's plan of

treatment didn't make sense.

So, I called the IDF and got the name of some one in the state whose child

has PID and talked to her. She referred us to our new immuno. The immuno

is 4 hours away. He orders the IVIG and a home health company comes to our

house to administer the antibodies every 21 days. Our ped sees Rebekah for

emergent problems, but if the infection site is obvious, our immuno

prescribes over the phone for us.

We were diagnosed 2.5 years ago. We have gone from terrified and hysterical

parents who were neglecting our other 3 kids and our marriage, to a

reasonably sane family who doesn't think about germs and fevers every single

hour of the day. I now hug Rebekah just to hug her rather than to check her

for a fever surreptitiously.

Melody, you have every right to get a copy of your medical records. You

have the right to get a second opinion or even a third. Treatment can be

done locally after you get it established. We had no trouble getting the

treatment approved by our insurance company. And quality of life matters.

You need to get a stronger line up of people who support your son's need for

a healthier life. If you ped isn't helpful, you'll need to look for a new

one. Your dh probably needs to be coming to these appointment and even

taking the lead questioning the doctors, if you feel that you are being

dismissed. You are your son's strongest advocate and you may need to get

firm with your immuno about getting answers. And remember to document every

phone call, antibiotic, symptom, conversation, diagnosis that you get. And,

no, Rebekah wasn't scarred for life by getting IVIG at 28 months. She was

more hurt by being chronically ill, in my opinion!!

This stage is so hard. You know that something is wrong with your son, but

you don't have a diagnosis yet. Getting a diagnosis is a kick in the

stomach because it makes the problem more " real " but it also is a relief in

a sad way. This stage is also so hard because the answers come far slower

than the questions. And sometime there are no good answers. And,

unfortunately, ask 4 doctors the questions and expect 5 answers. We were

the ones who had to decide whether to give IVIG or not, and whether to put

in a port or not. I've even had the doctor order blood work and hand the

report to me to read. I think I floored him when I interpreted it

correctly! You are about to join the Medical School of Moms that many of us

have been in for years! But, Melody! It will get better!!! Just hold on

for now and keep advocating for your son!!

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3

Re: So frustrated - What do I do? (Dale)

Dale,

I guess in my sheer frustration, I forgot to mention some things.

First, he is 22 mos old. He will be 2 in about 6 wks. He has had

now 3 Ig level tests. His levels have all come up, but the IgG is

lagging far behind the progres the other levels made and varies up

and down with no real progress shown since the initial test. The

range of norms have been the same with each retest and were done

using the same lab and the norm given were, per the immuno, good for

his age range. The norms are IgA 24-121, IgG 533-1078, and IgM 26-

218. He has had 3 rounds of Ig testing and the results are in

chronological order....IgA <14, 14, 21; IgG 335, 316, 339; IgM 17,

16, 23. The tests were each performed about 4 wks apart. The titers

to all but the Pneumococcal vaccine came back normal. Of the 12

[Guest guest]

In a message dated 9/26/04 4:59:54 PM Central Daylight Time,

pmork@... writes:

<< You are about to join the Medical School of Moms that many of us

have been in for years! >>

Oh, Pam, that's perfect!

I remember being at a routine follow up with Neurology at Children's Memorial

Hospital. It was relating to seeing how was doing six months or a year

(I forget now) after her pneumococcal meningitis. By then, I had learned to

use the doctors' own jargon whenever comfortable in order to be taken more

seriously (now it's only when I knew exactly how to use it, I never try to guess

how to pronounce a tricky word or what a certain term means, I'd probably guess

wrong and look silly!). It was simple stuff like saying " chronic " instead of

" neverending " or " acute " instead of " awful bad " , or knowing on demand the

correct names of certain meds she had received, stuff like that. The neurologist

paused at some point and said, " Are you in the medical field? " and he meant it

as a " compliment " , as in, why didn't I know you were in the medical profession.

I have to admit I felt very proud, after all, I learned everything I know in

order to help my daughter. Of course I said no, that I learned it all trial by

fire with 's medical issues.

Back to the looking silly part, I once pronounced eosinophils as " ee soffen

ells " because that's how I thought my own gp had said it (look at the spelling,

Kel!). Thankfully, the ped just gently corrected me with the right

pronunciation, she didn't mock me! I also remember hearing Clooney

pronounce

petechiae on the TV show " E.R. " and it was so far off my assumption of how to

say

it that I thought they must have gotten it wrong. Of course, I was the one who

was wrong... they do have professional consultants for shows like that, ya

know! But in a world where I hear Noo-QUE-Lar instead of " Nuclear " about 50/50

(my own personal pet peeve), I used to assume I was right about everything. Not

even close! Now, if I have any doubt at all, I ask a doc before I open my big

yap with another " ee soffen ells " mistake.

I feel like writing a rant like the " You know you're a redneck when... " only

it's " You know you're the parent of a chronically ill child when... " . My

thought in writing this post was that I knew I had arrived in " Holland " for real

the day when I walked from the cafeteria back into my daughter's hospital room,

saw the sign on her bed and said in a stressed-out voice to my husband, " WHY

IS SHE N.P.O.!?!?! " You know you're in Holland when you understand what NPO

means and know it also means something's up -- they aren't letting her eat

because they are setting her up for a new test. On that one, she was transported

to

Children's Memorial and admitted with a 104 fever, pallor, wierd cry just like

her meningitis one, lethargy, 26,000 white count w/extreme left shift &

oxygen sats in the low 80s. Chest x-ray and spinal tap were clear, so they

assumed

sepsis. She was so sick! That would have been the Magic #2 Big Infection that

" qualified " her for IVIG in our stingy immuno's eyes, but the blood cultures

grew nothing (she had been given IV abx before any tests, could that have

messed up the cultures?). Anyway, the NPO was for an EEG, she was smacking her

lips

for hours, which is a sign of seizure activity. Sure enough, she did have

seizure activity but nothing terribly worrisome and nothing ever came of it.

Later the immuno chalked it up to febrile seizure, though her fever had been

under

control at the time. She's had a normal EEG since, so there's nothing going

on there.

Whew, I got off on a tangent!! Oh, that's another one, when you remember the

white counts for every big illness!

(mom to , 5-1/2 yrs old, polysaccharide antibody def)

[Guest guest]

In a message dated 9/26/2004 11:46:56 PM Eastern Daylight Time,

bunneegirl@... writes:

The neurologist

paused at some point and said, " Are you in the medical field? " and he meant

it

as a " compliment " , as in, why didn't I know you were in the medical

profession.

I have to admit I felt very proud, after all, I learned everything I know in

order to help my daughter. Of course I said no, that I learned it all trial

by

fire with 's medical issues.

Like the time not long ago when Brittany was in the hospital and the DR on

that shift was talking to me. She was sweet as can be, she said " see you are

becoming a doctor " I thought for a minute and realized that in a way she was

right I knew more about my daughters illness than most doctors do. So, yes you

do get some medical training that's for sure.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

This is very funny. Funny when you know how to pronounce some of these medical

terms and even funnier when you know how to spell them too.

We all definately got a crash course in immunology! My mother still tells me,

" Say that word again...hypo-somthing " I say, " Hypogammaglobulinemia " ?

I start talking about T-cells and B-cells and the difference between the

two...blood counts, etc....I have been asked many times, " Are you a nurse " ?

Nope, just pay close attention to whats going on. We can't be good advocates if

we don't understand the what or the why. At least it helps anyway!

Kim

Re: Re: So frustrated - What do I do? --Long Response for

Melody

>

> In a message dated 9/26/2004 11:46:56 PM Eastern Daylight Time,

> bunneegirl@... writes:

>

> The neurologist

> paused at some point and said, " Are you in the medical field? "

> and he meant

> it

> as a " compliment " , as in, why didn't I know you were in the

> medical

> profession.

> I have to admit I felt very proud, after all, I learned

> everything I know in

> order to help my daughter. Of course I said no, that I learned it

> all trial

> by

> fire with 's medical issues.

>

>

>

> Like the time not long ago when Brittany was in the hospital and

> the DR on

> that shift was talking to me. She was sweet as can be, she said

> " see you are

> becoming a doctor " I thought for a minute and realized that in a

> way she was

> right I knew more about my daughters illness than most doctors do.

> So, yes you

> do get some medical training that's for sure.

>

> Janet, mom to Brittany, CVID, age 13

>

>

>

>

[Guest guest]

I have requested his entire med records from the Children's hospital,

all specialists and the ped. The entire thing is over 4 in thick

already! I have also read through them as this is where I am finding

out a lot of things that have not been told to us. Things that I

have been making notes to ask about.

I was also suspicious about those " improving " numbers as well and I

am glad I am not alone in questioning them. We have used the same

lab for all of them, although they have not all been drawn at the

same location.....I think they are all processed at the same place

though. I may have them process the next round of Ig levels through

the immuno's office lab next time and to heck with out of network

fees. It may be worth the peace of mind to have accurate numbers if

that makes a difference.

I have found that I have gotten quite literate in the med jargon as

well through research and asking lots of questions at dr visits and

hosp stays. It is amazing the things you learn that you never wanted

to know. Since the reflux dx, I have learned so much more about the

stomach, GI tract, GI tests, types of stomach tubes and buttons, all

types of meds and their classifications, yada, yada, yada.....I am

glad most days that I can communicate well enough with these docs

that they can take me more seriously and that I have a dh that will

go to all the really important appts with me to make sure we are ALL

on the same page. It really seems to help.

We are sure looking into add'l names for 2nd opinions from IDF and

also will be talking very seriously with the ped if we cannot come to

a reasonable onclusion very soon. In the mean time, I am arming

myself with as many highlighted studies and articles I can off the

internet to back my stance up. Any info you can send my wy would be

gratefully accepted and welcomed!

Thanks again for the kind responses and making me feel sane and like

I am doing all I can and should for my son. It is hard when the docs

responses to you make you doubt whether you are doing the right thing

or not. I know I should trust my mommy instinct more as it has never

let me down yet, but it is also har when you are treated like the

overreactive mom and have nobody you know " in real life " who knows

what you are going through to ask for advice and opinions. Thank

goodness I found this site, or I KNOW I would be losing my sanity

right about now! Thanks again! You all are a wonderful bunch!

Melody

> Melody,

>

> I'm NOT an expert, but those IgA, IgG and IgM numbers don't

say " improving "

> to me! I think that the small differences are just the normal

fluctuation

> in your son's levels and probably also in the sensitivity of the

lab. We

> also have two documented instances where Rebekah's IgA was

undetectable, but

> was listed as " 14 " by a lab. We learned the hard way that not all

labs are

> equipped to do immunology blood work correctly.

>

> My dd was 28 months when she was diagnosed, just a few months older

than

> your son. She had been sick except for the first 3 months and

about a month

> in the summer. It was never anything life-threatening. I remember

praying

> for one whopping infection so that I could get their attention! We

got

> blown off royally since Rebekah never was critically ill. In fact,

during

> the entire 28 months, Rebekah had probably only had 3 rounds of

antibiotics!

> Her peds called every single infection a virus. By the time we were

> diagnosed, Rebekah was critically ill from a seemingly endless

series of

> infections that were left untreated and from vaccinations with live

> vaccines.

>

> I remember crying and screaming at God. I also felt that I was

going

> insane. Rebekah seems so sick to me and everyone else acted like

it was

> nothing. My dh and I even joked that it was like she had no immune

system.

> How right we were! I know that we even suggested this to the peds

and got

> laughed at.

>

> What did we do? First, we got a copy of our dd's entire medical

history,

> including the one pathetic CBC they had done. This helped us

document how

> many times we'd taken her in. It also showed us how far from

normal her

> blood work really was. Next, we changed hospital systems. We went

to the

> system that is associated with a medical school. The nice thing

about

> changing systems is that the new ped has to read or at least look

over the

> new record when you carry it into the office and plop it in front

of him.

> I called mom's I knew all over town and got recommendations for a

ped who

> was great at diagnostic work and I got an appointment to go over

Rebekah's

> medical history. I brought my calendar with sick days marked (or

should I

> say healthy days not marked LOL), the medical record, the blood work

> numbers, and a list of symptoms. The ped referred us to a pediatric

> hematologist/oncologist who recognized that Rebekah had an immune

problem.

> About this time, I found this group and discovered that the hemo's

plan of

> treatment didn't make sense.

>

> So, I called the IDF and got the name of some one in the state

whose child

> has PID and talked to her. She referred us to our new immuno. The

immuno

> is 4 hours away. He orders the IVIG and a home health company

comes to our

> house to administer the antibodies every 21 days. Our ped sees

Rebekah for

> emergent problems, but if the infection site is obvious, our immuno

> prescribes over the phone for us.

>

> We were diagnosed 2.5 years ago. We have gone from terrified and

hysterical

> parents who were neglecting our other 3 kids and our marriage, to a

> reasonably sane family who doesn't think about germs and fevers

every single

> hour of the day. I now hug Rebekah just to hug her rather than to

check her

> for a fever surreptitiously.

>

> Melody, you have every right to get a copy of your medical

records. You

> have the right to get a second opinion or even a third. Treatment

can be

> done locally after you get it established. We had no trouble

getting the

> treatment approved by our insurance company. And quality of life

matters.

> You need to get a stronger line up of people who support your son's

need for

> a healthier life. If you ped isn't helpful, you'll need to look

for a new

> one. Your dh probably needs to be coming to these appointment and

even

> taking the lead questioning the doctors, if you feel that you are

being

> dismissed. You are your son's strongest advocate and you may need

to get

> firm with your immuno about getting answers. And remember to

document every

> phone call, antibiotic, symptom, conversation, diagnosis that you

get. And,

> no, Rebekah wasn't scarred for life by getting IVIG at 28 months.

She was

> more hurt by being chronically ill, in my opinion!!

>

> This stage is so hard. You know that something is wrong with your

son, but

> you don't have a diagnosis yet. Getting a diagnosis is a kick in

the

> stomach because it makes the problem more " real " but it also is a

relief in

> a sad way. This stage is also so hard because the answers come far

slower

> than the questions. And sometime there are no good answers. And,

> unfortunately, ask 4 doctors the questions and expect 5 answers.

We were

> the ones who had to decide whether to give IVIG or not, and whether

to put

> in a port or not. I've even had the doctor order blood work and

hand the

> report to me to read. I think I floored him when I interpreted it

> correctly! You are about to join the Medical School of Moms that

many of us

> have been in for years! But, Melody! It will get better!!! Just

hold on

> for now and keep advocating for your son!!

>

> Pam

> wife to (17 years)

> mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3

>

>

>

> Re: So frustrated - What do I do? (Dale)

>

>

>

> Dale,

>

> I guess in my sheer frustration, I forgot to mention some things.

> First, he is 22 mos old. He will be 2 in about 6 wks. He has had

> now 3 Ig level tests. His levels have all come up, but the IgG is

> lagging far behind the progres the other levels made and varies up

> and down with no real progress shown since the initial test. The

> range of norms have been the same with each retest and were done

> using the same lab and the norm given were, per the immuno, good for

> his age range. The norms are IgA 24-121, IgG 533-1078, and IgM 26-

> 218. He has had 3 rounds of Ig testing and the results are in

> chronological order....IgA <14, 14, 21; IgG 335, 316, 339; IgM 17,

> 16, 23. The tests were each performed about 4 wks apart. The

titers

> to all but the Pneumococcal vaccine came back normal. Of the 12