The verdict is in........

[Guest guest]

In a message dated 3/15/2006 7:51:24 PM Central Standard Time,

osdbmom@... writes:

> And then today I got a summons for Jury duty....... I know this sounds

> awful, but is there any way toget out of that with the kids? I mean,

> is just having TOO MANY SICK KIDS an actual reason to get out of it

Absolutely. I've gotten out of jury, once was when I was pregnant with Kate

and taking care of PID pumpkin at same time. There's a little spot on there

where you write hardship or reason you think you should be allowed to take a

pass

-- concisely but professionally state number of chronically ill kids with

dx's, how you have to coordinate their medicines and monitor their illness and

whatnot. I bet they will let you out, albeit with a warning they can call you

again some other time.

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

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

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

[Guest guest]

A doctors note can excuse you from duty. Any reason they're waiting till

May to start infusions?

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

Valarie,

Write a letter to the jury board telling them that you have 3 (? is it 3)

children with a primary immune disorder (Common Variable Immunodeficiency) and

that you are their main caregiver. Tell them that with this disorder your

children can't fight off illnesses so even a minor cold could send you

immediately to the emergency room.

I did this and never heard back from the board. That was 2 years ago. The

critical part of the letter is MAIN CAREGIVER. They will not excuse you for

financial reasons.

Good luck,

Pam

[Guest guest]

Valarie,

Will do you do the infusions at UM?

Pam

(Mom to Tim CVID)

[Guest guest]

Valarie,

I know you must have mixed feelings about this. I've told you my take on

this many times, it's a double edged sword. There are risks and rewards

with IVIG, most of the time I believe most of us would say the rewards far

outweigh the risks. You will probably have lots of questions about IVIG as

it gets closer, make sure you ask for suggestions on making things go as

easy as possible. I know the thought of it seems overwhelming, but you

will get used to it, just like everything else you've had to do for the kids

over the years! My only question is why are they making you wait so long?

That seems crazy! How long of a drive are we talking? Tell them you want

to get them in next week and then you'll follow up with the docs in May.

IVIG is done every 3-4 weeks in most cases anyway, you'll have to be back

there around that time regardless. That's my 2 cents :-)

Mom to Conner (11, possible combined immune deficiency, Asperger's, mild CP,

partial seizures, asthma, GERD, Hashimoto's disease and resolved adrenal

insufficiency),

Hayden (11, unknown PID, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, unknown PID, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown PID, asthma)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

osdbmom wrote:

> yeah, but that is what you wanted, right? " and I feel like, yes, its

> what i wanted IN THEORY, but this is reality, and reality BITES.

,

You've answered your own question. Dealing with something " in theory "

is different from dealing with it in actuality -- but you will adjust

and when you see that IVIG does indeed make their lives better -- all of

your questions will disappear. But that takes time. One of the things

we did just before starting IVIG was to write down Katy's ongoing

symptoms. I highly recommend this to everyone before starting IVIG.

We created a page of " this is what Katy deals with on an ongoing basis " .

For example (I don't remember without getting up and looking it up) --

headache - every day all day long. severe headache - 3 times a week,

debilitating headache (no light, no sounds, no food) about once a week,

ice pick headaches approximately every six weeks. Then we documented

her leg pain, her digestion problems, her diarrhea, her infections,

constant viruses, etc. everything that we were currently dealing with.

Be sure and note frequency and intensity to the best of your ability.

Then HIDE THE LIST. DO NOT LOOK AT IT! In 6 months, do the same thing.

Write down exactly what you are " currently " looking at. Then pull out

the first list and compare notes. Then hide those lists for another 6

months. At six months we had some real hope but nothing absolute. At

one year -- it was a radical change from the original list.

Life is so busy that we adjust to whatever state our kids are in at the

current mode and tend to project that that's the way its always been --

but that's not always true. This List will help you be able to see

clearly the changes. At the end of the year if you asked me if Katy

still has headaches I would have said, " Yes, she does! And they are

terribly frequent. " But by documenting that now she has a headache once

a week and a severe headache only once every month or two, and no

debilitating headaches in the past 3 or 4 months and no ice picks --

Wow! We're doing better, aren't we!!!!!

I would think with multiple kids -- this would be absolutely essential!

I know that waiting until May sounds like a good idea in order to avoid

it -- but honestly, the sooner you get started the sooner they will

start to feel better. And the sooner you start it, the sooner that

first one will be over with and you'll be closer to getting through the

worst of it. By May, you guys could be " old pros! " But I also know

that sometimes infusions centers take time to get set up and insurance

and all. But I would encourage you to move forward and not sit on this.

There's nothing worse than " dreading " something that you are afraid of.

Best wishes to you and yours as you start this new phase of treatment.

In His service,

Dale

[Guest guest]

This is really long, but I know there's a lot of you considering IVIG

and looking at decisions concerning it. Hopefully this will help to

answer some of your questions and concerns. Don't be afraid of asking

questions -- that's the only way you'll get answers. Getting the facts

helps worry more than anything -- although we are tempted to bury our

heads in the sand and avoid them -- what we really need are facts to

stop the worry monster!

> I see someone on this board has a child who is hiv pos. and I wonder

> if she got it from the IVIG?

Nope! There's no known cases documented of HIV transmission in IVIG.

It is a blood product -- but it is very specific parts of the blood

products -- limited to only the protein of IgG with a few other trace

proteins. So, it is purified, then purified, then purified again and

again and again. Not only would there have to be an " unknown " virus,

but it would have to be of an " unknown " type of virus because IVIG is

purified in so many different ways.

I am worried about ports and infections.

You may not need ports -- you may have good vein access or decide to do

SCIG. Put that one off to worry about later.

> I am worried that Brennan will never on any planet hold still that

> long and if we will be let to walk around.

Katy has made cookies while on IV's, she's painted pictures, she's done

her and the nurse's nails, she's sewed at her machine, she's crocheted,

she's watched movies, she even dipped chocolates during one IV -- but

the IV tubing got pretty chocolate coated and we wasted a lot of

chocolate! Nobody wanted to lick it off those tubes!!!! Most infusion

centers have toys and computer games and make it reasonably fun for the

kids. Starting the IV is no fun -- but once it's started, they can do

almost anything as long as it doesn't pull the IV out of their arm.

Most kids play just fine. And they learn that they have Mom's 100%

attention and thrive on it! With multiple kids, I guess it's not 100%

-- or maybe Moms of Multiples are given a higher percentage to give!

On the other hand -- some kids get premedication like Benadryl that make

them sleep. Katy slept through a lot of IV's. She would get up and let

the nurse start it, then she wanted to go back to sleep. So, she would

move her pillows and blankets to the couch and curl up and sleep the

entire time. The nurse would take a few vitals, but we usually opted to

just let her sleep as long as she looked okay.

The first few times on IVIG usually are the worst -- meaning if you are

going to have side effects - they are usually at the beginning of

treatment -- not later on. The reason is that they need the IVIG so

badly and when it starts going into their bodies -- it starts to fight

the germs -- so they feel yucky -- just like you do when germs are being

fought. But usually after a few months, when the develop a good level

of IgG, they only feel yucky if they get IVIG while they are currently

fighting something.

Now, on this list you will hear about kids that have terrible reactions

to IVIG -- but remember that what you don't hear on this list are the

1000's of kids that get IVIG every month who are doing great and their

moms have no reason to write in. They are moving on to life in the fast

lane!

Let's review some of the statistics concerning side effects: This is

from a national survey done by the IDF in 2003 entitled: Treatment

Experiences and Preferences of Patients with PIDD: First National Survey.

I have a problem with this survey because I believe the numbers are

misleading -- they are statistically correct but easily misunderstood by

non-statisticians. I will quote the survey -- and then add my comments

at the bottom.

22% of IVIG users have had a serious reaction to IVIG in the past 12

months.

22% of IVIG users have had a serious reaction to IVIG but not in the

last 12 months.

55% of IVIG users have never had a serious side effect or reaction.

Those who have experienced what they consider to be a serious side

effect most oftenly reported:

headaches (not related to speed of infusion*) (28%)

fever (19%)

nausea (14%)

vomiting (12%)

chills (12%)

shortness of breath (10%)

hives (10%)

migraines (9%)

skin rashes (8%)

high blood pressure (7%)

joint swelling (7%)

anaphylaxis (5%)

chest pain (5%)

back pain (6%)

shaking (5%)

fatigue (5%)

34% of those who experienced side effects indicated that this had

occurred when trying a new product for the first time.

Dale's comments -- not the report!

Note that headaches are those that are not related to speed of infusion.

It's a known fact that if you infuse too quickly, you'll get the

headache of a lifetime! So, that's not what they are documenting here.

But also note: You don't see any deaths! You don't see any untreatable

conditions! You don't see any permanent damage!

But here's where I have a BIG problem with this report. These numbers

make it sound like 28% of people getting IVIG get headaches and that is

NOT what the study says. These statisticians said that of the 44% who

have gotten a reaction, 28% of them got headaches -- that means that in

actuality only 12% of the people who get IVIG get headaches.

Now, here's all those statistics in relation to the total number of

people receiving IVIG.

Headaches (12%)

Fever (8%)

Nausea (6%)

Vomiting (5%)

Chills (5%)

Shortness of breath(4%)

Hives (4%)

Migraines (3%)

Skin rashes (3%)

High blood pressure (3%)

Joint swelling (3%)

Anaphylaxis (2%)

Chest pain (2%)

Back pain (2%)

Shaking (2%)

Fatigue (2%)

15% of all people getting IVIG indicated that this side effect had

occurred when trying a new product for the first time.

These statistics also do not show a picture of frequency. In other

words, for this survey, we reported that yes, one time (out of 10 years)

Katy got nausea, and yes, once she had chills (in 10 years), and a few

times (out of 10 years) she got headaches. In other words of the 2% of

people who get " shaking " was that every single infusion? or was that

once over a period of time? Or possibly only the very first infusion

and then never again.

Statistics are very, very interesting, but make sure you know what you

are getting -- numbers!

I am worried

Yes, that's what Mom's do. God gives us worries so that we'll be

careful and thorough and good Moms and also so we'll ask for His help!

Hope that helps,

In His service,

Dale

[Guest guest]

You have a 3 yr old with severe asthma and nobody to watch them

cassie

osdbmom wrote:

> So, the ID office called me back today with the action plan. Savannah

> and Brennan are going to start their IVIG infusions on MAy 24th, which

> will give us all time to get used to it over the summer, and hopefully

> Savannah will be doing better by next school yr. I am hoping that if

> Brennan starts now, by the time he is school age(two more yrs), he

> will be more under control and able to attend. I know that I have

> expected it, and surmised as much, but to hear the dr actually say

> that Savannah has CVID was like a slap in the face. To actually have

> the date set for the infusions really upset me, and again, I dont

> quite know why, b/c I was SURE this was coming.......I mean, I am not

> dumb, I have been watching their labs and symptoms and talking to drs

> for yrs, but still, I took it hard. I hung up the phone and burst into

> tears, and dh was like, " what " ? and I told him and he was like " well,

> yeah, but that is what you wanted, right? " and I feel like, yes, its

> what i wanted IN THEORY, but this is reality, and reality BITES.

> I am curious about something else. WE are not going to start donovan

> on IVIG at this time. Reason being, though he has had IgG def all his

> life, now he suddenly has normal IgG and def Iga and IgM. The dr seems

> to think he may be transitioning to CVID slowly......that this could

> be what happened with savannah, but we never had cause to check her

> IG's when she was little. He has had a lot of sinus infections this

> winter, but not as many lung infections like bronchitis or

> bronchiolitis this winter. So we are going to keep him on prophylaxis

> Bactrim for the duration and keep checking his numbers every 6 months.

> Has anyone elses kid done this? And I wonder if this is what I can

> expect with Brennan? He has a really really low IgG and subs.

> And then today I got a summons for Jury duty....... I know this sounds

> awful, but is there any way toget out of that with the kids? I mean,

> is just having TOO MANY SICK KIDS an actual reason to get out of it? I

> havent anyone to care for them and it would be ridiculous to expect

> my husband to miss work and money to watch the kids so I could go.

> Thanks,

> valarie

> mom to

> Olivia, 9 , allergies, asthma, GERD

> Savannah 8, food and other allergies, CVID, severe asthma

> Donovan 5, allergies, severe asthma, TBM, low IgA and IgM

> Brennan, 3, food and other allergies, TBLM, severe asthma, hypogamm

>

>

>

>

>

>

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

> with a Primary Immune Deficiency. Opinions or medical advice stated

> here are the sole responsibility of the poster and should not be taken

> as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

>

>

>

>

[Guest guest]

I was put on notice twice while the kids were little but haven't had

that happen since was born.

Cassie

bunneegirl@... wrote:

> In a message dated 3/15/2006 7:51:24 PM Central Standard Time,

> osdbmom@... writes:

>

>

> > And then today I got a summons for Jury duty....... I know this sounds

> > awful, but is there any way toget out of that with the kids? I mean,

> > is just having TOO MANY SICK KIDS an actual reason to get out of it

>

> Absolutely. I've gotten out of jury, once was when I was pregnant with

> Kate

> and taking care of PID pumpkin at same time. There's a little spot on

> there

> where you write hardship or reason you think you should be allowed to

> take a pass

> -- concisely but professionally state number of chronically ill kids with

> dx's, how you have to coordinate their medicines and monitor their

> illness and

> whatnot. I bet they will let you out, albeit with a warning they can

> call you

> again some other time.

>

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

> has

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

> & other

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

> healthy!)

>

>

>

[Guest guest]

I was put on notice twice while the kids were little but haven't had

that happen since was born.

Cassie

bunneegirl@... wrote:

> In a message dated 3/15/2006 7:51:24 PM Central Standard Time,

> osdbmom@... writes:

>

>

> > And then today I got a summons for Jury duty....... I know this sounds

> > awful, but is there any way toget out of that with the kids? I mean,

> > is just having TOO MANY SICK KIDS an actual reason to get out of it

>

> Absolutely. I've gotten out of jury, once was when I was pregnant with

> Kate

> and taking care of PID pumpkin at same time. There's a little spot on

> there

> where you write hardship or reason you think you should be allowed to

> take a pass

> -- concisely but professionally state number of chronically ill kids with

> dx's, how you have to coordinate their medicines and monitor their

> illness and

> whatnot. I bet they will let you out, albeit with a warning they can

> call you

> again some other time.

>

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

> has

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

> & other

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

> healthy!)

>

>

>

[Guest guest]

They will monitor the blood pressure but even with that one

didn't have narry a problem.

cassie

osdbmom wrote:

> the reason we are waiting till May is b/c the hospital is quite a long

> drive, we have all 4 kids pulmo appts that day and also ID appts that

> day already scheduled. By doing it this way, we can go early, set them

> up on the infusions, have our pulmo and ID appts(its all in the same

> office) and still have a good portion of the day to watch for

> reactions--she said something about if there is a reaction then they

> may give benedryl or steroid via IV........but Savannah cant take

> steroids so I JUST REALLY HOPE there are no reactions!!!!!

> Dr said if they get any worse with infections, we may be able to start

> earlier. But I am not in a hurry...........it may well take me that

> long to actually wrap this around my brain.

> Thanks for the ideas about jury duty too..........it makes me feel

> bad, but I just really cant do it right now. I will call tomorrow.

> valarie

>

>

>

>

>

>

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

> with a Primary Immune Deficiency. Opinions or medical advice stated

> here are the sole responsibility of the poster and should not be taken

> as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

>

>

>

>

[Guest guest]

You have some of the same fears that I faced but I went ahead and didn't

wait that long becuase it would give me more time to 'think' about i. Of

course I had thought about it while we were waiting on medicaid to

'approve' it only to find out that once we were re-instated they didn't

have to pre-auth it anyway.

Cassie

osdbmom wrote:

> I am ok with the waiting. I am still reeling that this is actually

> happening, and I would like to have it all together to talk with our

> pulmo, who weve had for several yrs, and the new ID guy, who I have

> met once(but really like)about everything. Everyone is holding steady

> with their " normal " which isnt really normal for a normal kid, but

> normal for mine, and not getting worse at this time. Right now we have

> a ton of house renovation going on, I am still trying to find the time

> to go back to KY to pick up my MIL who I dropped off there last montha

> nd still need to go back and get her!!I just dont have time, but I

> need to make it.......then there is the girls baptism, Easter, plus I

> am heading up a fundraiser for a family at school whose little boy has

> leukemia, and that has totally MORPHED from a pop can drive and Easter

> bunny pics to WAY more!!But, thats good the more people who want to

> get involved the better. It isnt that far off..........and we need

> time to get used to the idea. Ok, I NEED time to get used to the idea.

> I know how well everything is screened and all, I know this is as safe

> as its probably going to get, but I am still worried about the risks.

> I see someone on this board has a child who is hiv pos. and I wonder

> if she got it from the IVIG? I am worried about ports and infections.

> I am worried that Brennan will never on any planet hold still that

> long and if we will be let to walk around. I am worried that savannah,

> who is already haviing a tough time with the problems she has will go

> beserk when she finds out about this. I am worried, worried,

> worried..about how it will affect the other two kids. I am worried

> about Savannah having a reaction and needing steroids and not being

> able to take them and then WHAT WILL WE DO? I am worried about it

> affecting my marriage(case in point, I spent the day in tears, tell dh

> what the dr said, he says, yeah? so? and then, this is the garage door

> opener I decided to buy(online). I resent that. I resent that he will

> get to sleep thru all this crap(3rd shifter) and I will be the one to

> deal with the tears, the pain, the after effects of all this. and then

> they come home and daddy is the fun one and I am the one always

> holding them down for more tests and misery.

> and now I need to go take Olivia to the dr, as she has a sore throat

> and her asthma is rotten, her pf is down to 125, and its normally

> 275-300.

> I am SO glad I joined this group. Iwould be so lost if I hadnt.

> valarie

>

>

>

>

>

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

> with a Primary Immune Deficiency. Opinions or medical advice stated

> here are the sole responsibility of the poster and should not be taken

> as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

>

>

>

>

[Guest guest]

Yes, we are doing it in the U of M infusion room, which Dr weinberg

says has much cool stuff to do. Its supposed to be the one right near

Suite D, Taubman Center, floor 1. Is that where you go? It would be SO

AWESOME if we were there on the same day!!!!!!!!!!!!!!!!!!!

Dale, thanks for all that info. I know in my head, this is right. I

know in my head, the risks are minute and the reward is greater. I

know in my heart of hearts that this is what we need, what I

anticipated, what I totally expected from that phone call.

And yet, there is that whole pesky

IAMTHEMOMMYDONTTOUCHMYBABYDONTTOUCHMYBABYAGAIN thing that seems to be

hard to let go of.

ON that same note, I got home from Olivia's appt today, and Savannah

was mad at me again. Note--this is the one who hates going to the dr

and cries whenever we tell her she has an appt. She asked me why I

took Olivia to the dr and not her. I told her, b/c Olivia has a sore

throat and cough, honey, you arent sick right now. She stood up,

stomped her foot, and yelled, YES I AM SO SICK I AM SICK ALL THE TIME

WHEN are you going to make an appt for me? I had no idea she hadnt

been feeling well this week..........and tonight Brennan tells me he

is sick again. And no more than I got home with Olivia than he started

again with the coughing and runny nose and saying he has a sore

throat. He is already on ceftin twice a day, and savannah is on

bactrim twice a day......not sure what to do about that. They are on

so many meds!!Anyway, I called the pulmo to talk about Olivia and

maybe chat a bit about the IVIG. My regular nurse is out and I got the

jerk one( I am sorry, but she really does have a bad " brattitude " ,

even the dr doesnt like her)who made me feel about 2 inches high and

like I was just wasting her time with my boring phone call. So, I will

wait till I can get in touch with the dr and talk about it, if she

wants to move it up she will, she is the boss of it all down

there!!LOL I guess I just need to lay it all out on the line here, I

dont want to go by myself, I want to have someone to hold my hand thru

the first one, and I want my pulmo to be that person. I know her and

trust her and I WANT her there. If we can do it earlier, fine, so long

as she is there. I told the family dr about the plan, and she was

THRILLED about it, and really feels good about it. We had talked about

it before,as an " if " . It made me feel good that she was so on board

about it. If everyone is still sick next week, I am going to try to

get the kids into pulmo clinic and we will talk then.

This whole thing is just hard. valarie