IgG numbers etc.

[Guest guest]

In a message dated 1/3/2003 10:22:24 AM Central Standard Time,

autti@... writes:

> If a child is really sick and his numbers are not that low, a good

> immunologist will check their function.

Hi Autumn, welcome back! I have wondered about the function equation before,

seeing as has such trouble making antibodies to prevnar. She doesn't

have protective levels of any of the serotypes after a whopping six prevnars

at this point. Ursula has mentioned the theory of " hollow " IgG numbers in

relation to her husband -- what IgG you having being a hollow number if the

function is not there. I've worried about that with , but apparently

none of that matters unless she gets another deadly infection. They don't

even care if she's sick all the time, even if there are a lot of bacterial

infections. If nothing is deadly they don't count it basically. Quality of

life apparently isn't an issue! Neither is frequent abx usage! I know I

should be thankful that she's as healthy as she is, but I just hate seeing

her sick so much. I know it's " only " sinuses and ears and such, but it's

miserable for her and I worry about so much abx so often. As things have

improved over the years I've been grateful but it's never enough -- I want

her to feel good more often and each new illness is sort of upsetting because

she's getting older and wondering why this is happening so much.

Today she was giving each of her stuffed animals two shots and then going

back and doing it again. She does fingerstick blood draws where she tips the

imaginary tube back and forth just like the nurses do. It sucks that she

knows how to do that! This last round of CBCs and 2 rocephins each day really

upset her.

Anyway, welcome back and hope the boys are doing well -

(mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has

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

other defs)

[Guest guest]

, You may have to decide what you want to do about and quality of

life. I know we have spoken of it before. It does require you to venture out

and get another opinion maybe at another Pediatric hospital or something. It

may be time to take another look. It has been another year and she seems to

be still getting sick regularly. You would then be able to look from a

broader look back and say do I want IVIg or not? Lucas started at 4 after he

just could not stay well. He never had Meningitis or sepsis. Our docs looked

at chronicity. Again as Dale suggested write it down month by month. Antx by

Antx and how well she has gotten over the bugs or NOT. You have alot more

control in this than you may think. There are many doctors and many opinions.

The big question is whether you want to do the IVIg. has a documented

immune deficiency. Once you start, most docs want you to commit to it for

atleast a year. We are on it for the long haul. Our doctor retested this

summer while we were on the IVIg and stated that we probably will not do

anything until he is 10-12. Then we will see.

Just food for thought. I hate to see you thinking there are no options. I am

not a doctor but from what I have seen and heard the standard of care is

IVIg. It is not an exclusive club that you might want to join, but an option

to increase quality of life. At the same time it is quite the committment .

Financially and time wise. Our infusions run when we see the dentist, when we

go on vacation , when we take days off etc. Sickness comes any and all the

time so I do not know what is better. We atleast have found he gets sick but

not near as sick. And overall less often. He has less joint and tummy pain

and he has more energy for the first two weeks. He is now seven and we are

amazed that it has been 2 1/2 years since we started his infusions. We do not

have a port so we do in and out IVs and so far so good.

PS. I am also in a walking cast from tearing the ligaments in my foot the

week before Christmas. only 3 more weeks. So cutting my finger was an add on.

It is amazing how stress makes me clumsy. BARBIE Lucas 7, CVID, IVIg,

Bipolar

[Guest guest]

Hi Pattie and ,

I just thought I would comment on the subject of IgG numbers. It is important

to know that the decision is not always based on how low the number is. If a

child is really sick and his numbers are not that low, a good immunologist will

check their function. For example, my son Mark's IgG levels were in the mid

400's and we were told that that was a decent level for his age and weight at

the time (even though it was below normal)....however, what all the physicians

concurred with was the amount and type of infections that Mark was

getting...they were constant, some very serious and some life-threatening. It

was then decided that the function of the level be checked and low and behold

Mark had no responses to most of his childhood immunations and zero to all

twelve serotypes of pneummococal antibodies (which was given twice). It was not

until we saw a specialist out of RB & C that it was discovered that what we were

measuring in Mark's IgG level was a cell called Cd5+ (you can read more about

this at our web-site if you chose www.scid.net/cd5cd19pid/ ) Such is the case

with T-cells, you can have a lower then normal number but what physician's are

concerned with is do they function and work properly. Mark's T-cells were

extremely low and his physicians did not worry until we did a

mitigen/proliferation study to test the function...the function was abnormal and

Mark was treated appropriately at the time. There are some cases, such as

Brutons/X-linked aggamaglobulinemia where it is obvious that there is a need for

IVIG...patients with Brutons have extremely low levels of IgG like in the 30's

or below. I think that was is very important for parents is to be your child's

advocate. I did not know very much about IVIG, IgG etc at the time of Mark's

diagnosis...I was learning as we were going along but I still was naive about

many things. I also learned the extreme importance of developing a working

partenership with my son's physicians. There is a wonderful book that I read

at the time called " The Healing Partnership, Parents, Professionals and Children

with Chronic Illness and Disabilities " the author is Taner-Leff. It

was extremely helpful. One thing that I found very frustrating during that time

was that there were so many physicians involved and not one of them was taking

the lead. I finally approached our immunologist and asked him to be the

" captain of the ship " so to speak. He agreed, that things can get very

confusing with too many hands in the soup and that while it is crucial that all

physicians work together, there needs to be a person taking charge of the

situation. This is not the solution for everyone but it certainly helped us

during that time and to this day. Also, using resources like the IDF,

Modell, IPOPI were all very helpful at that time and to the present day. OK,

now I am rambling and my laundry is suffering...LOL. Good luck to you

Pattie!!!!

Always,

Autumn (Mark Cd5-Cd19 PID and )