FW: /PedPID-SharedFilessite.txt - my reply

[Guest guest]

Jody, all mail that you want to send to the PedPID group should be addressed

to PedPIDonelist . Looking at your letter and without knowing his Ig

numbers I would say it sounds like Selective Antibody Deficiency. Also not

knowing what t and b cell response studies were done I'm not sure what could

be going on there. Do you have any of the actual lab results, the numbers?

One good thing to consider is you are never without another opinion. Who

says you can't go for a third? or fourth for that matter. Get all of Ben's

labs together, all the results from the testing he's had and write it all up

and send it to some of the more known PID doctors. See what they say. How

often does the immunologists that you are seeing treat PID children? What

are their outcomes? Keep on until you're comfortable with the level of

communication. Good luck with the test results.

Ursula Holleman

Macey's mom (3 yr. old with CVID, asthma, GERD, sinus disease, grade I

left kidney reflux, Sensory Integration Disorder)

ICQ # 28592349

http://www.icq.com

 

PedPID email list archives

http://www.netpage.org/PedPID/_PedPID/

 

PedPID email list introductions

http://www.netpage.org/PedPID/_PedPID/introduction.htm

 

 

Shared Files site

>>

>>To view the shared files

>>

>>Go to www.onelist.com

>>

>>Member sign in

>>

>>Click on PedPID link

>>

>>Click on Shared Files link

>>

>>and each of the introductions that have been sent in to the group will be

>>found here. This will help you to understand each members

>>child and what PID they are diagnosed with. As new members join I

>encourage

>>them to visit this site and afterwards write their own

>>introduction to the group. Lurkers are welcome but we encourage everyone

>to

>>share their experience with the group.

>>

>>

>>Ursula Holleman

>>www.netpage.org - Pediatric Primary Immune Deficiency

>>www.netpage.org/macey - Macey's page

>>

>>

>>

>

>

[Guest guest]

Jody,

I'd agree with Ursula... it may be a matter of asking a TRUSTED third

party (perhaps your pediatrician, if you like him/her and believe he/she

could interpret the tests appropriately, or a third immunologist) to

look at the tests and help you sort through the answers. One thing to

keep in mind with any of these disorders is that even an

allergist/immunologist has probably not seen too many of these cases,

because most of the A/I training is in allergy, depending on where the

doctor trained. But some of the tests are a bit inconclusive, too, just

by their nature. The first time I had a negative DTH test (that's the

skin test with candida, mumps, etc. that Ben had and didn't react to..

it's called a Delayed Type Hypersensitivity Test), it came back without

any reaction ( " anergy " ), which can be a sign that your CD4 T-cells don't

work properly. But you can also get anergy from other illnesses that

are happening at the same time, from steriods, from some antihistamines,

etc. It is by no means a specific or telltale test. I also had to have

mine repeated after a few months, when I was not sick, and at that time

when it was negative, they actually believed it. The more specific test

for T-cell function is the mitogen/antigen proliferation test. This is

just putting T-cells in a test tube with one kind of " bug " which makes

them proliferate non-specifically (to test if they can proliferate

period) and with another group of " bugs " which you should have specific

immunity to (like tetanus, etc) to make sure your body has retained

memory for these things when you were immunized. These are more

specific and helpful tests, but a lot of people use the DTH as a

screening tool, because most of the time, if that's positive, the

mitogen/antigen test is unnecessary. You may want to ask them about

doing this test. It's got to be done at a lab which has experience

doing it, because unfamiliar labs are more likely to mess it up than

come out with useful answers, and that could just confuse the issue

more, which you don't need right now. I know there's lots of info being

thrown at you right now (like taking a drink from a fire-hydrant!), but

take it slowly, try to read what you can, keep asking questions, and

MOST IMPORTANTLY, find at least one person whose answers you would

believe. I think trusting one person to help you interpret the results

will be the most helpful thing to you, because this is all very

technical and overwhelming information, and sorting through it all can

get difficult. Good luck - I hope the AFP test comes back negative, and

that you get more answers soon....

Take care,