Dale and Everyone

May 16, 2002

Hello,

I agree it's a difficult line to walk, because I am careful not to

overprotect . At the same time, I want to make sure he doesn't

encounter any unnecessary risks. I am just very careful where we sit when we

go to the Peds. I think at nine, I could easily give him bad feelings about

his body or lack of immunity, so I am careful not to make him feel bad about

his situation.

One of the things I have done is always take a small bag (it happens to be

a Mc Bag) with us to appointments. It contains books and small

toys from home. We only used the bag when we were at appointments, so it

remained a special treat. Now that he is nine, he wants to play with his

Gameboy which is perfect for doctor's appointments. Once in a while, the

waiting room is full of flu patients. doesn't usually get the stomach

bugs, but I do. So...a few times I have considered either standing in the

hall or sitting in our car. I have a cell phone, and they can call me when

it's time.

Just a few ideas. It's trying to make your child feel as normal as

possible while secretly being the germ police. Whew!!!!

Sandi, 's Mom

May 17, 2002

Sandi,

Thanks for the good ideas! You're right that it's a difficult line to walk,

but I really enjoyed hearing your solutions.

, 's Mommy

>From: SassyKay418@...

>Reply-

>

>Subject: Dale and Everyone

>Date: Thu, 16 May 2002 15:05:42 EDT

>

>Hello,

> I agree it's a difficult line to walk, because I am careful not to

>overprotect . At the same time, I want to make sure he doesn't

>encounter any unnecessary risks. I am just very careful where we sit when

>we

>go to the Peds. I think at nine, I could easily give him bad feelings

>about

>his body or lack of immunity, so I am careful not to make him feel bad

>about

>his situation.

> One of the things I have done is always take a small bag (it happens to

>be

>a Mc Bag) with us to appointments. It contains books and

>small

>toys from home. We only used the bag when we were at appointments, so it

>remained a special treat. Now that he is nine, he wants to play with his

>Gameboy which is perfect for doctor's appointments. Once in a while, the

>waiting room is full of flu patients. doesn't usually get the

>stomach

>bugs, but I do. So...a few times I have considered either standing in the

>hall or sitting in our car. I have a cell phone, and they can call me when

>it's time.

> Just a few ideas. It's trying to make your child feel as normal as

>possible while secretly being the germ police. Whew!!!!

>Sandi, 's Mom

>

May 17, 2002

Sandi,

Thanks for your response with some great suggestions! You're right that

it's a fine line to walk.

, 's Mommy

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January 28, 2005

The 5% solution is very " soft " on the system but for this being 's

first infusions I wouldn't go above 50. Macey's run as high as 120 with a

10% solution but that was several years into treatment and with 3 IV premeds

on board. I would stand my ground and while you can premed at home with the

benadryl and advil you have to look to him to adjust the rate. You can

refuse any type of treatment you deem unsafe and he can't " abandon " 's

care. So ultimately he may threaten to send you off to someone else he

can't.

Good luck.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

January 28, 2005

In a message dated 1/28/2005 7:53:01 PM Pacific Standard Time,

uahollem1@... writes:

You can

refuse any type of treatment you deem unsafe and he can't " abandon " 's

care. So ultimately he may threaten to send you off to someone else he

can't.

Thanks, Ursula, this gives me a place to start. He is a very caring

Immunoloigst and even changed his billing practices to treat . I so hope

he's

going to listen.

Sandi, Mom to , age 11. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, chronic ear, nose and throat infections--including strep, COPD,

asthma,

severe allergies (including meds), Carnitine deficiency, GERD, suspected

Velocardiofacial syndrome.

January 28, 2005

In a message dated 1/28/2005 10:19:15 PM Pacific Standard Time,

dietdoc@... writes:

Perhaps you can work with the nurses?? Good nurses should be flexible.

,

No such luck, this Immuno runs the IVIG himself. But I think I will call

him again and ask him what time we should be there--to leave us enough time to

run the IVIG rate very slow?? That does sound very diplomatic--thank you. I

love your any contradictions line???

Sandi

January 28, 2005

from Dale, Mom to Katy, CVID,age 20

Sandi, thanks for your encouragement. I hate to be a complainer -- but

I feel totally yucky. This surgeon made me feel so guilty for wanting

surgery. I just want my life back! He thinks there is a problem with

conditioning -- so I'm trying to walk more and actually keep my head up

more. I can tell that makes me a little stronger and I'm going to keep

at it -- but I don't think that's the " cause " of the way I feel. Oh,

well. We'll wait and see.

Monday, first thing -- I would call IDF and ask about Flebogamma -- what

company makes it? I've never heard of it. I just want you to make sure

that it is a safe product. There are gamma products on the market that

are helpful for " other " problems but should never be used for immune

deficient patints because they are not pure enough. I just want you to

be assured of the safety of the product. It may be one of the new ones

I'm just not familiar with.

2nd - If the product is safe, it's still a foreign biochemical that you

are putting in his body. Everyone has a little bit of problem getting

used to the drug -- but if there's a nasty reaction -- you need to

report it not only to the doctor giving it -- but also to the

manufacturer and if that's not successful, to the IDF.

3rdly -- Know that many of our kids require premedication with Benadryl,

Tylenol or Motrin to help their bodies not react to the foreign

proteins. If you know that those drugs are safe for Kody -- then I

would certainly pre-medicate. Some people never see a reaction -- but

MOST people have some kind of reaction the first few infusions. That's

pretty normal as the body adjusts to having an immune system. After

the 3rd or 4th reaction -- I begin to ask questions! Especially for

nausea. But, then, some kids get nauseated at the sight of needles --

only you know what it normal for Kody.

One of the other questions I have is: why are they using 5% solution.

That means that he's getting an awful lot of fluid and I'm wondering if

it might be too much for his little system.

Finally, I think that a rate of 100 for a first infusion is inviting a

major reaction. It's going to be hard to get the nurses to listen to

you -- but you are an experienced Mom. So stand firm and even though it

makes it longer -- I wouldn't let them go over about 75 this time and

see if he does better. You can tell the nurses that studies very

definitely link headache with speed of infusion and you don't want to go

through that headache again! Sometimes they use the product insert to

state that that's very, very slow -- but again there's a difference in

rate for a person receiving gamma who has a healthy immune system and

one that is deficient. See if you can stand firm on that. Now, after

you get established and everything is going smoothly, you may be able to

increase the speed -- but right now -- I would keep it low. Some people

never go over 35! So, stand firm. It CAN be done!

And don't forget if there's a nasty reaction -- you may need to take him

to the ER to document the reaction rather than taking care of it

yourself.

Hope some of this helps,

In His service,

dale

January 31, 2005

In a message dated 1/29/2005 8:27:36 PM Pacific Standard Time,

dietdoc@... writes:

We were told, by our last doc, that la was the ONLY patient that

reacted poorly to IVIG (vomiting, headache, etc.). How can this be accurate?

Anyway, it is such great news that Bri's immuno is nice and hopefully he will be

reasonable with your requests too.

,

Yes, your la sounds like Bri!! The IVIG is tomorrow, so I'm praying

that he's okay with running the rate slower. Today, his assistant told me

that he has never asked to run the rate slower--that made my heart sink. But

I'm

still determined.

Sandi, Mom to , age 11. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, chronic ear, nose and throat infections--including strep, COPD,

asthma,

severe allergies (including meds), Carnitine deficiency, GERD, suspected

Velocardiofacial syndrome.

February 1, 2005

Sandi - Never say never with this group of kids. Stand your ground.

They're just trying to make you doubt your ability and have faith in theirs.

I have had patients with legitimate concerns before surgery and I tend to

use the express " Well I've never had that happen " . Which in all truth may

be true but if the patient stands firm then we accomodate the request (as

long as it is not jeopardizing their care). Running at a slower rate could

in no way jeopardize his care. Asking to run it faster to say speed up the

appointment and go off to do something else would be a poor request but not

slowing it down. It might be that the appointment would need to be moved up

earlier in the day to allow for the lengthened stay but something should be

able to be done.