Re: new here, back from another immunologists office....

[Guest guest]

Hi Kim,

Welcome to the group, you will learn a lot here. I'm sorry to hear that

your little guy has been having such a tough time.

I have to say that getting answers in immunology is one of the hardest

things I've experienced. It seems to take so long for them to gather

information as individual tests can take weeks or months to process.

What part of the country are you in? We are in Indiana, which doesn't

exactly offer a lot in immunology. We go to Cincinnati Children's Hospital

and are still searching for a diagnosis for our four kids. We are being

referred to the NIH, in hopes they can come up with a diagnosis for us. We

have discussed doing a bone marrow transplant for our son Conner, but we

have a lot of unanswered questions about it. We were blessed to get to meet

a couple of kids this summer who are one year post transplant and they are

doing great! It was very encouraging!

Currently, our son Conner is the only one on IVIG and he seems to be doing

fairly well. Last winter our other three kids developed pneumonia (our

daughter was hospitalized and one of the other boys should have been ) and

Conner didn't even get a sniffle, I believe IVIG was the reason for that.

There are various options for IVIG or similar treatments, some are even

administered at home.

In case you haven't done so, you should contact the IDF to get their patient

handbook (it's free). You can learn more at www.primaryimmune.org

Hang in there!

Take care,

Mom to Conner (12, unknown combined immune deficiency, lymphadenopathy,

asthma,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided),

Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown immune deficiency and asthma)

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

[Guest guest]

" ...his antibody reactions were too low to read, but they are repeating that

test. The first immunologist said he had a B and T cell deficit. Does anybody

know anything? "

Hi, Kim.

You have been through so much with Lochlan and I can definitely relate. Waiting

can be so hard...

In the meantime, you can become a scholar of immunology. = )

http://www.primaryimmune.org/

http://www.info4pi.org/

Where are you located? My hope is that you have an immunologist that you can

work with. It can take weeks, months, or even years to figure out the exact

defect. However, in more severe cases like severe combined immune deficiency

(SCIDS) time is of the essence and drastic intervention are needed immediately.

When B and T cells show a pattern of being low/dysfunctional the docs will do

futher testing. Sometimes, they will much more obscure studies or even genetic

tests (though only 10% of PIDs are identified), etc. before you need to make a

decision about treatment. If your child is on IVIG and you take precautions

(some docs order anti-microbials as well), that will buy you some time to get

all of the results and process the information. If you don't have answers and

the doc orders IVIG, consider freezing a couple vials of pre-IVIG blood.

One challenge is that Lochlan is young and his immune system may be in flux.

With my daughter, it was like trying to diagnose a moving target. T-cells can

get " smarter " over time but not with SCIDs or certain combined immune disorders.

Even CVID can have a T-cell component.

My daugher was also nursed at 17 mos (would not eat) yet she was chubby.

Nursing enabled her to live 2 years (always infected) without IVIG. The first

set of tests took 2 weeks. Showed low everything and no response to prevnar.

The second set of tests was worse AND zero T-cell function to antigens (T-cells

could not recognize candida or tetanus). Our general peds doc believed it was

SCIDS and told me about BMT. I deferred to our immunologist and he felt SCID

was unlikely. She did okay with IVIG and homeschool so we watched/waited for 2

years. She is now 4 years old. Her T-cell function has improved a bit, but

most deficiencies remain. She is classified as CVID for the time being.

This disorder has forced me live with ambiguity and unanswered questions.

Still, I find myself searching for answers alongside the wonderful parents in

this group.

Welcome!

mom to Dani, CVID